Let's Make Lemonade

One life to Live

2011-05-27T09:59:00.004-04:00

Oh my....
Am I way overdue on a post, huh!!

So... the last time I was here, I had just gotten my packet from Social Security.

However, since that time....... I decided to let it go. The whole thing stresses that crap out of me. I feel like half the tests I have gone through were taken just so someone else would see what I'm talking about. And the judge just didn't get it. I ran out of energy I guess. I'm tired of arguing with some old man about something he has no clue about. He is NOT a doctor.... and he is not me. How in the world could he possible understand female problems? .... I didn't go down without a fight though. I reapplied.... spent a month getting my records together, and filled out a ton of paperwork(reliving every detail from the past several years)... and then got denied again. I don't need a piece of paper to tell me I'm disabled. Anyways the whole thing was just too much. For the last 8 years.... All I've been able to focus on was how sick I was. ((It's been hitting me here lately- I was really sick there for awhile)) Now it's time to focus on moving froward! I'll have these problems for the rest of my life, and I'm tired of defending myself. Really, do you know how much easier it would be to just go to work.

So I opened an online store to sell 'my art'. It's nice having something positive to focus on! It doesn't pay the bills, but hey- it's more than I've made in Years, so that's a good thing! And it gets me out of the house everyday to see the drama at the post office. Yes, there's drama everyday at My post office, lol. But I like having something that I can do from bed. And when I'm tired, I can go to sleep.... and when I'm 'sick'- I can deal with that. If I'm having a bad day, I don't have to call in sick. I can just roll back over and sleep some more. If one of the kids needs me, I can drop what I'm doing (although they'd tell you I get pretty lost in my minis, lol) ,and take care of one of them. For example- Tuesday evening my oldest fell off his bike, and I had to take him to the ER to get his arm checked out. It was nice to be able to just go.... And when I got home, I went right back to crafting cause I was wide awake then. I take it as it comes, you know. One day at a time!

So while I'm here, Here's my recent complaint list, lol:

Abdominal pain- BM hurt like hell- I can feel them moving through my stomach and it feels like someone is dragging glass. Could be that cyst... could be scar tissue. Either way.... I'm living with it, till someone tells me I can't. They told me another surgery would be really rough, and well I'm just not ready for that... I'm still up and moving, so I'm good, right?! I do generally feel better....could be the meds, could be the stress?! My weight is back to where it is suppose to be- and now none of my clothes fit again. lol. I still get monthly migraines... I still wake up in the middle of the night vomiting? But I would have to say the hardest part is still my heart. I get dizzy standing up, I can't stand in one place for any amount of time with out my legs going numb... And I still get runs of SVT- really fast heart rate. I sweat so bad.... Had forgotten how bad until I tried to do some yard work the other day- I was drenched in 5 minutes! Oh, and my eyes don't want to dilate. It's horrible.... They start to burn, and water, and then water somemore. I've always been sensitive to the sunlight, but not like this.

But I'm living with it. I have managed to stay away from most of my doctors here lately, and that's a good thing:) I get tired of going! And I'm starting to realize that there might not be a 'fix-it' solution. Either I go in and get numerous tests done, so the doctor can understand it.... or I deal with it. One of the last doctors I saw has a plan for me to try this med, and max out on the dose, then if that doesn't work, he wants me to try this med at maxium dose...and so on. I also asked him before I left "What would happen if".... and when he answered with 'There's only one way to find out'.... I realized he didn't know anymore than I did, but was willing to try me out on this med, or that so he could understand it.... It hit me, I don't wanta play theirs games anymore. I'm tired. I spent the last 10 years trying to figure it all out, and I want to spend the next ten years focused on something else. I hope I'm making sense here.... I know I'm rambling. But it is where I am with it......

So with that being said, I will be back..... oneday. I have a life to live:)

Is that a little light I see?

2010-10-29T09:15:00.002-04:00

I think there may be a little light at the end of this tunnel............... Finally!

My teeth have been bothering me A Lot the past few days, so my sleep schedule is all out of whack. So, yesterday afternoon, I took a nap.......... And when I woke up, I saw that there was a big envelope on the table with my name on it... And as soon as I saw the return address, I knew it was from Social Security. Do you remember months ago when I was trying to get a copy of my court records, so I could get my final appeal ready for court. Well, I had faxed the office requesting a copy of my court records, so I could find a lawyer. I also requested I get a 60 day extension from the receipt of those records, to file a new appeal. Well..... My request was granted, and I finally got my records:) So...... Now I have to get them to the lawyer I talked to months ago that offered to take a look at my case for me. And yet all I really want to do is go back to bed.........

I'll be back soon with all the other stuff, just wanted to document that I got my records:)

Come on tomorrow!

2010-10-07T08:41:00.004-04:00

Ready to hear me whine some more?? Don't worry, Tomorrow I get to start taking my meds again, and hopefully then I'll be on our way to getting balanced back out....

SO.
Tuesday was another day I can classify as Awful! I was nauseous ALL day, didn't want to eat...and had a headache. For Lunch, I went with something simple, and ate a bowl of plain rice, and this seemed to settle my stomach. So for dinner I got brave and ate some left over pasta, and it seemed to settle ok. Although I was still nauseous, it wasn't really bad. About 5 hours later, It all decided to give me a run for my money. ((I'm thinking at this point my stomach really should of dissolved some of that rice and pasta, ya know??)) I normally don't get sick (vomit) unless I'm coming out of surgery, or have taken any kind of pain killers... or I've got a migraine....my point is that I normally do good in that department, Shees! Everyone in the house can have the flu, and it will skip right over me every time. But no....not Tuesday night. I spent A Lot of time with my head in the toilet.... not enjoying my pasta or rice the second time around. OMG It sucked the life right out of me. I can't remember the last time I got sick that many times. My poor body starting to go through the chills so I decided that crawling into a nice warm bath would be a good idea, and It was. We'll other than the fact that I can't get my right leg wet....the bath was really relaxing. I managed to get a 2 hour nap, 2 hours was all I could take of hanging my leg out of the tub/or bracing it on the wall. ((Tomorrow, I get my 2 little stitches out.... so hopefully here in the next week or so I can get in a normal bath. Normal meaning at least getting my whole body under water for a few hours:D)) After my cat nap................Oh, yeah! It was more like a kitty party. I think my cats know when I'm not doing good, cause they'll congregate around me as if I they're worried or something. The kitten thought at one point that I needed his head in the toilet with me, lol.... At least I wasn't lonely, huh! So after my interesting bath, I tried to sleep, and it just wasn't going to happen. So I watched a little TV and a few hours later I finally dozed off. Got up at 7 to feed the cats, and went straight back to bed. I was way to wobbly and dizzy for anything else. I got up around noon, and spent the day trying to reliquidfy myself. Water, chicken noodle soup.... and a little Gatorade. (Gatorade has been making my stomach icky the past few days, so I've been trying to not to drink it.) Over all, yesterday was better than the rest of the week. Then again, I sat/laid my ass on the couch all day and didn't do a thing..... Today, I'm still feeling like shit, lol.... but it's a normal shit so I can handle it. I think. We shall see.... I'm off in a little while to pick up my bestiest buddy, so he can help me do my grocery shopping......

~Wondering if I have have the flu? Or is it the weather changing that has gotten me, or is it me being of my meds, or a combination of things?? Either way.... it sucks. I will say that the kid, and the bf have a cold.... so it could just be a bad week. I just know I'm ready for it to end!

.....oh yeah......... I clocked my heart at 174 bpm last night.....Nice, huh! Hopefully they'll catch that at tomorrow's tests.

Alright I guess if I'm every gonna get motivated I better get off of here. I gotta go layer up, it's cold for me here......and get my butt in gear. Oh look at me go........ LMOA

Stop whinning and just do it already!

2010-10-05T07:18:00.004-04:00

I feel like Shit!
YUP!
Pure shit!!

So....Here we are on day 4 with no meds, and I'm not having fun anymore...Well, I was never really having fun to begin with, but you get the picture. Let's see.... Day 1 I was pretty shaky.... but over all it went OK, although I did get a long nap in the afternoon. Day 2 was miserable. My IBS kicked in in the afternoon~ and it was miserable! let me see if I can explain this...... My stomach cramps up, and they're more like labor pains than anything else.... They come for a minute, then go for a minute, and then come for a minute, and so on...... And it the mean time, my heart starts to act up. I swear it feels like I'm having a heart attack. Someone one day is going to find me dead on the toilet over this, I just know it....So here I am, sitting on the toilet, feeling like my stomach is going to explode, my heart is pounding so hard, I'm just waiting for it to run away.... Then I feel like I'm gonna puke~ So at this point I'm still on the toilet, with my head in the tub, my heart pounding......and then like I need any more symptoms, I GET HOT! Really really hot~ So I turn the water on so I can let my hand run through it...and dump some cold water on my head. Yes, it's awful! And of course my body doesn't know 'how to cool down', so I go from sweating to the teeth chatters in about a second.... All while still sitting on the toilet. LOL~ Fun huh?? Well, that took everything out of me, so I went and curled up in the bed to get warm, and feel asleep....... And that was Sunday. Oh wait..... Sunday night I picked up Drew from his Grandmother's and some time between that and getting home, I had his 'cold'~ Now damn it, I haven't been sick in a while~ Not a cold sick anyways. Then again the weather changed this weekend....so it could be my allergies.

Monday.... I sat my ass on the couch allllll day! (Still feeling the effects of Drew's cold) My heart was going a million miles a minutes, and every time I got up, I felt drunk. It's starting to get colder here...so out came the thermals~ But overall is was an OK day..... except for laying down around 5 to take a nap, and then not waking up till 6 this morning.... Haven't had the night sweats in a few days, so it was nice to wake up dry. Being wet and cold is never a good thing!

And here I am on Tuesday.... Sick as a dog. And grumpy. Sometime last night, this 'cold' moved into my chest..... And I feel miserable. I so want to go back to bed....but I can't. I have therapy this morning...I really really need to go grocery shopping, the cats are out of food.....And I need to find the electric bill! I put all this off yesterday.....but since I have to go out anyways today... I'm just gonna have to do it. Yup! That's my motto for the day....Just Do It!

we shall see how far I get later, lol

So, Until Next Time.....

I love being a Mom

2010-10-02T21:44:00.004-04:00

Cause you get to wear band aids like this and get away with it! LOL!!
Don't You just love Elmo!!

And doesn't Cookie Monster just bring a smile to your face:)

So, Ya wanna see my boo-boos?? These 2 tiny little holes were from the biopsy they did on Friday. They're testing the nerves in my legs.

One of the reasons I'm showing these is because these are my first outside stitches, Ever! I've had a LOT of surgeries, but they've all been with either the dissolvable stitches or using the derma-bond (super-glue)... So it's kinda neat to me, lol. However.... The doc that did them said he wasn't going to tie them too tight because when they're tight they tend to swell and then they're hard to get out...But looking at it, I wonder what the point was of doing it to begin with. Doesn't really look closed to me, does it now??

Huh?

So..... Lets get back to the doctor visit. Just in case you want to know, and because I'm trying to keep track of it myself.... I'm now seeing a specialist in the Neuroendocrine Unit at the Strelitz Diabetes Institute. No, I do not have diabetes.... I have (what my cardiologist thinks) is some form of dysautonomia.... Which means he thinks I have a dysfunctional autonomic system. Long story.... so I'll skip to the current visit. This new doc is running a bunch of tests, and one of them was the skin biopsy. They also ran A LOT of blood tests.... 9 vials worth! Looking them up today, I see he's checking my hormones levels, thyroid and adrenal glands...he also running other blood tests too, that I will worry about if the time comes. Next was a breathing test. This was pretty simple, well as simple as it could be anyways. It records you breathing normal for 5 minutes, then records you deep breathing for 2 minutes, then normal breathing for 2 minutes....Then they have you stand up, and stand still ~for 5 minute~ so it can record you breathing normally while you're standing. At the end of that test... I did feel what feels like my heart kick starting, twice in a row. I felt it in my chest and it sent this weird sensation through my body. When the test was over, I looked over at the machine and had to giggle.... I could see the top red line, near the end had skipped twice~ And when I asked the tech if that was the heart beat, she said yes. Sometimes, it's just nice to see things on a monitor that you normally try and convince yourself that is not there. Hopefully I can get a copy of this for the heart doc, so I can ask him about it, too. After the breathing test came the hot/cold test... they strap this contraption around your big toe, and then ask you to push this button every time you feel it getting hot or cold..... when that was over, you then had to use your big toe to feel vibrations, and then what I will call a tickle test... 'Can you feel this now?' ~Never realized my big toe was this important?! Hahaa After that was the biopsy..... Not bad at all. They numb your leg up, take a couple of samples, 'sew it up'...... and out the door I went.

And then.... Today is day one without meds. Not great if you ask me, but I can function. It makes me shaky, and my heart is more erratic.... but so far, I'm not freaking out yet, lol.

Other things I want to remember:

*CANS is a test that is also called Non-invasive Autonomic Nervous System Monitoring~ AKA: the breathing test I was taking about earlier

Ok...my brains on overload now, so I think it's about time for bed....

See ya later:)

That wasn't so bad...

2010-10-01T14:37:00.001-04:00

9 vials of blood and a few stitches later I survived the tests!! Woo Who!! LOL
.....I'll be back later with more info......

See ya later Alligator!

Meet "The Records"

2010-09-24T09:37:00.003-04:00

These are my medical records! The bottom binder has mostly everything... Surgeries, tests, doctor visits.... The next binder is my Heart medical records~ from the past 4 years. The next folder, the orange one is my military medical records from when I was a kid....They go up to about age 16. The blue folder is my notes and stuff. The next thin orange folder is my heart records from when I was a baby.... And the paper pack on top is the short version of my medical records and surgeries.

Yes! It's a lot! My Mom was smart enough when I was younger to hold on to the military records... And I have been gathering my records for about 6 years now. I recommend this to anyone. It's nice to have the answers to questions at my finger tips. It's nice to be able to pull out a records when a doctor wants to see them, or for when I'm telling them about a surgery, and they get that look in their eye that they don't believe me. It's nice to have this info at my finger tips, so when a doctor asks me a question, I can look it up. My memory is terrible, and I get confused easily.....I can't remember the last time I had a procedure done, or all the procedures I've had done for that matter. The only down side...... Is trying to carry them in the doctors office. LOL I normally only travel with the top 'paper pack'... the rest I leave at home.

But not this time. Tuesday I finally met with a Dysautonomia doc..... And I think this is gonna be good for me! Other than them running behind, the appointment went well. I had the most through exam I've ever had.....And October 1 I go back for a day of testing, Fun, huh!! I think there's gonna be blood work, EKG, response to temperature test, a breathing test, and something else that I can't remember right now. **I remember now... A skin biopsy! How could I forget about that?? LOL Then October 2nd, he wants me to stop all meds..... And well, It's gonna suck! I can't go a day without my heart meds. If I forget to take one at night, I definitely can feel it by the morning (actually most nights if I don't take my meds at a certain time, my heart is generally reminding me before I can go to bed)..... However they want me to come back in on the 8th for some more tests~ off my meds. I get it...... But I don't like it!!

So.... One problem they did find was with my eyes. They don't dilate very fast. So when I'm inside and go outside.... It's hurts my eyes...They water... and I can barely open them. It's always been like this.... That's why you can never find a picture of me with my eyes fully open in the sun...Actually I get joked over 'the faces I make'....LOL! I'll have to show you some of those, their funny! But it was nice that a doctor noticed it. Like I said, he was very detailed! He talked about my palpable thyroid and nodules... he noticed that I had breast surgery, and he even said he could feel a mass in each breast. Nice! ((I don't think they're anything to worry about...Just how it is with me.... but I guess I'll have to get that checked one day)) He inspected my mouth, talked about my gums....Which was kinda eerie for me....I don't like having people around my mouth....Hence why I haven't seen in a dentist in longer than I care to admit to.......'shivering from the thought of a dentist doing anything near my mouth!!' ...... And he was a nice guy! Didn't stress me out at all!! Woo Who!!! So....I'm back to waiting again, waiting for the first so they can poke and prod me and then waiting for the 8th so they can do it again! lol Fun, Fun!!

But I'm still smiling so all is well for now......
Right??

See ya Next Time:)

A quick update..

2010-09-15T15:26:00.002-04:00

Went and saw my thyroid doc on Monday....had an ultrasound, and to our surprise, the questionable nodule has shrunk! The doctor asked me if I had been taken thyroid med, cause normally nodules only shrink on those meds, and I told him No. I did not go into 'nothing is ever textbook with me'....He'll figure that out on his own as time goes by. I don't have to see him again for another year, unless something changes. :)

I've been seriously tired for days. We're talking taking 8 hour naps, and then sleeping through the night on top of that. I think my body is just trying to catch up on all that sleep I missed out on this past summer. I dunno.....

And WORK........Or should I say the lack of WORK......Is driving me nuts. I haven't had a real job in a loooong time, and I've been starting to feel a little better here lately, But just can't figure out what it is that I can still handle. I still have daily issues with my heart rate, and BP fluctuating. Still can't stand or sit still for long periods of time with out everything going numb below my waistline. And speaking of Waistline.....I'm almost at 160 lbs!! Yes, I'm excited, I'm a tall girl, and when I was at my thinnest (128) I looked sick. My cheeks were caved in, and for the first time in my life my thighs didn't rub together when I walked.......However, I was always cold, and uncomfortable. Now that I've put on some weight, it doesn't hurt so bad to sit....I have boobs again, lol.....I know, Like you needed to know that....but when you lose what you had and then it comes back one day, You feel relieved! So It's a good thing that I've gained weight.
.....no more cookie dough for me! LMAO....I'm a sucker for cookie dough!

So...that's about it.
Until Next time.....

2010-09-02T20:43:00.002-04:00

Well.....I'm not doing a very good job of keeping this blog updated, now am I. Don't worry, you're not missing much.....I've been trying to hang low, and stay under every ones radar. Plus I've had the kids everyday this summer, and they just wear me out:)

I did go back to the GYNs and she gave me a prescription for birth control.....and I have Not been able to bring myself to take a pill. I got the script filled, and it's sitting right on my dresser, but my mind tells me to flush them! I just don't want to go through the shift in hormones again........my heart doesn't like it, and I have a Big suspicion that it was the Lupron that crapped it out in the first place, so now that they're telling me to take something similar....I just can't. I do understand why they want me to take it though....they don't want any New cysts to develop on that ovary. But doesn't it seem stupid to keep my ovary because I need those hormones, if I'm only going to shut it down?? I dunno??? I'm kinda just over it, ya know!

Next month I have an appointment with someone who specializes in Dysautonomia, and I'm excited! It will be nice to talk to someone who will understand what I'm talking about. And hopefully he can help me make a better decision about the hormones........

Tha darn cyst is still there!!!

2010-07-29T10:32:00.003-04:00

Thought I'd update on a few things....

Finally adjusting to my up'ed dose of medicine, and finally at the big dose......Still feeling a little groggy in the morning~ but I can handle it.

Went it for my follow-up ultrasound on my ovary, and that cyst is still there. It's been there for about a year now, and I'm thinking from what was said the other day, that they're gonna want to go in there and get it. I have drug this on for as long as I could, and it may now be the time for me to surrender. I only have one ovary left, and I'm not ready to part with it yet....but sometimes, you gotta do whats right.......and I guess getting this cyst (which is now bleeding into itself) bothers them. Well....to be honest, it bothers me too~ Pretty darn painful at times, but pain is something I can deal with, most of the time. I go back in 2 weeks to talk to the doctor. In September I meet with a new specialist, and I'd really like to talk with him before I go in for surgery. I have questions that these doctors can't answer...I hate it when you ask them something, and they say they don't know> Very frustrating...They are suppose to know everything, lol!!!

** And my nephew will be here any day now. That's what I live for, Family....and I've been waiting a long time to be an Aunt! Hopefully, it all works out, and I can be there to hold her hand through this! 2 weeks till her due date!! WooWho!!!

Thanks for listening

2010-07-16T09:17:00.003-04:00

OK, so yesterday I still felt like a brick, spent the morning trying to keep my eyes open, then around 2, I feel asleep...slept till 9:30, then back asleep again at midnight. So either this double dose of medicine is kicking my butt, or I just needed some sleep. Today my eyes are a little more open, but I still feel groggy! Definitely feeling an afternoon nap coming on.....

2010-07-14T14:23:00.002-04:00

...upped the dose on my Amitriptyline to 50mg last night, and woke up feeling like a brick. Yuck! Not sure if I want to take it to 75mg like the doctor suggested. Will have to wait and see if the morning yuckies wear off after a few weeks. I hate feeling like I'm glued to the couch...... Zombie Mode is another way of explaining it......

2010-07-13T20:32:00.002-04:00

Well....Things went well today.

Saw my head doc this morning.... Learned that I really need to go into my symptoms more. Realized that I've just been going with the flow for years. I have issues with several body functions, and well, it's just become normal to me. I've had the proper work ups done, so I know I'm not dying, and that helps relieve some of that stress...But my symptoms are still here. I've gone through pain management therapy, and physical therapy and learned a lot about dealing with pain. I can't take any of the 'good pain killers', unless I want to spend the night vomiting, and when your in pain, throwing up doesn't help, neither does an IBS flair- which can also be a result of taking any pain medicine. I take hot/warm/cold baths, use a heating pad, a TENS machine, massage; trigger point rubbing, Sleep.....and then occasionally use Tylenol, Valium and recently Darvocet. Although I don't think I've taken one of those since last weekend, but then again...I've had the kids~ and I don't like 'being knocked out' when they're all here. OK...so I need to stop rambling again and get to a point. At some point I need to find a starting point, and work way way form head to toe, and get those 'symptoms' written down for someone to understand. Fun, huh.... I have tried this in the past and normally only last a few days recording things because I Hate Reliving It!! At least that's how I feel when I have to write about what happened.....then again, sometimes it can be therapeutic. So.....

I went to see the new GYN today, and I think I may be able to work with her. She's ordered another ultrasound......2 weeks from today, then I have a follow up appt. a month from then. I think she understands where I'm coming from with not wanting to go back on Hormone therapy, and understands my need to try and keep my only ovary. I just turned 31 this past April, and I'm not ready for menopause yet. And I don't think my body will handle that too well~ thinking it may affect the dysautonomia. However she did ask me when was the 'last time someone scoped me'......and I didn't really realize that it has been 5 years. Actually the last time someone looked inside was when I had that abscess removed, and the Foley ball temporary put in. Wonder what's happened in there since then? So...as usual...time will tell. Oh...and she upped my Amitriptyline......can't remember why exactly.....but I'm off to find out, lol.

**OK, so Amitriptyline (of which was originally prescribed to me for migraines) can also be used for chronic pain that is nerve related, anxiety disorders, and a few other unrelated (to me) things. So I'm assuming she's upped the dose to control my 'chronic pain'. At least that's my opinion. **Other uses: Carpul Tunnel Syndrome , IBS, and internal cystitis may all be treated with amitriptyline.
and Due to amiptriptyline's ability to induce sleepiness, it is sometimes used to treat insomnia

See ya next time:)

Rambling on again....

2010-07-12T16:17:00.003-04:00

Thought I'd update you on where I'm at this week.

So I found a lawyer in the area that has agreed to look at my file for me. However, I also found out that it's going to take this disabilitly office at least 2 months to 'get to the request' for that file.......and considering I have about 2 weeks to get this appeal filed, I had to laugh. In more ways than one, I screwed myself.....and if there's a bit of hope out there.....I can fix this....maybe. First, I have to muster up the energy and the courage to walk my ass through those big metal doors and beg, whine and plea. I'm not good at this, I'm not good at complaining. I read on a blog the other day where someone was talkng about pain, and not realizing how much pain they were in because it was just a part of who they were. And in turn, it made me look at my life. I don't complain about things on an everyday bases because I'm just used to it. Well, I can't say I used to it, but it is a part of who I am. From the pain in my abdomen, to the irratic heat beats.....it is what it is. However, I guess I need to learn how to complain....how to really express my symptoms, and not just try and sugar coat them for other people. I mean come on....When some one asks me how I'm doing, My normal response is 'Fine'..... No one wants to hear that I woke up with a migraine around 2....couldn't go back to sleep......had to puke around 3...and then I slept in the tub till 6....... And today I'm dragging. I'm alive ain't I? Then I'm Fine, you see? Oh My....I''m talking in circles again, huh??? LOL> Welcome to my world.....around and around we go....

So, I meet with a new OBGYN tomorrow, and I'm a little nervous. I don't know what my problem is, But I have yet to find an OB that I can get along with, and I have seen A Lot. I feel as if they never truly listen to me, and I'm not one to make shit up. I'm just so overly in tune with my body. I know this now..... It took me awhile to trust myself again, still very angry with the doctors that once made me doubt myself......But in the long run, It taught me to Trust My own Body!! And my own instincts. Hopefully this OB tomorrow can get on the same page with me....and if not, then at least I'll be able to get my follow-up ultrasound to check on that cyst. I do still plan on being stubborn about No more birth control.....and about not rushing into any kind of surgery.....If I've said it before I'll say it again......I'd like to keep this ovary as long as I can. In September, I'll meet a specialist who deals with Dysautonomia patients, and hopefully he'll be able to answer all those questions I have. I'm curious to see how the reproductive system and hormones effect dysautonomia patients......

OK, I'm off to get my questions ready for tomorrow.....I have to write stuff down or I forget!

My mind is going to fast for me to keep up.

2010-06-26T09:27:00.005-04:00

When you wake up crying, you know it's going to be a rough day! Would you believe I laid down "for just a minute" last night around 5......and didn't wake back up until 6 this morning. Yup! I was exhausted! And I don't think I would of gotten up at 6 if it hadn't of been for Otis in my face telling me he was hungry. Also missed my meds last night, so my heart's a little icky this morning.... And then to add insult to injury....

Let me tell you a funny story. So I got my new TENS machine in the mail this past week, and decided this morning that I would get it out, and read the book. It's not the same one I had before, this one has A Lot more buttons on it. So.....my back has been killing me (I think the cyst on my ovary is bleeding again, cause it's the exact same pain I was having last year) anyways.....where was I? Oh...The new machine, So I hooked it up, and got it going and laid down for the next hour. When it came time to turn it off.....I turned the dial the wrong way and about flew off the couch. HOLY COW! Does this little box have a lot of power! Almost reminded me of one of those ablations I had. Good God! I hope I never do that again. LOL< Yes, it's OK to laugh....I did, How dumb was that!?! So now that I'm shaking....... Lets get down to business!

I'm still on the lawyer hunt. Found one 2 hours away that at least took the time to explain stuff to me. I've got a lot to do this week to try and 'get it together'.......if I can find the energy. It makes it hard when you have blood pressure issues to get up and do things all the time. And if I'm right~ that cyst on my ovary is back- but then again, it may have never gone away, and it may just be bleeding again, and if I'm right about that then I've got a migraine coming soon, too. You see......I still have one ovary. Everything else was taking out over a period of time. I ovulate, but I don't have a monthly visitor, you follow. (Sorry to get personal) So I have to guess to when my cycle is, by the symptoms I'm having. And I've tried to write it down to find a pattern, but there isn't one, So I'm left to guess. My point here, is that I hope this doesn't create a problem for me................I need all the energy I can get right now.

Well.....I felt like writing, but I find myself censoring way too much, so I guess that may be it for now......But then again.......

OK...Here's an after thought.........Looking at my last post I see that it has been about a month since my last migraine...... So maybe there is a pattern......

denied.......again!

2010-05-30T15:10:00.003-04:00

I can't believe I haven't posted on here since the end of January....What can I say, this is how it is. I've been taking it easy.......and finally got back into head therapy. If you remember my old head doc retired last year, and it was really hard for me to start over. Can't say I've accomplished anything in therapy yet, cause we're still getting to know one another.But at least I'm there. I have been feeling better lately.....but hold on, don't get too excited, this is how it is. And I'm not saying I've been out running marathons or anything, but my spirits have been up. Then again it might just be that time of year. I always get that 'spunk' of energy when it starts to warms up.

Last week was a little rough....Stress has been a factor though so I understand. A week of migraines and lots of bathroom visits! Yuck! I got my last denial letter from Social Security this past week, and have been busily trying to find a 'disability lawyer that works at the federal level'. I really don't have the energy for this, but I also don't feel like there was anyway I could of held a job down and go through what I want through. No, I still haven't returned to work yet....still having problems with my blood pressure fluctuating....among other things. But I am trying to get there. I finally found a doctor in my area that 'treats' Dysautonomia!!! But couldn't get an appointment until September. However, my appointment is for 2 hours, so we'll be able to cover A Lot!!

So that's about it...Not to exciting huh, lol...............

See ya next time......

Thyroid update.

2010-01-30T20:22:00.004-05:00

Thought while I was on here...I should post an update, huh.

So, let's see. My blood work on my thyroid came back normal. But my ultrasound did not. Seems I have an enlarged thyroid (Thyromegaly, as it reads on the report)....and I have a 1.9 cm solid nodule on my left lobe. Fun, huh! I have had A Lot of crazy thoughts go through my head since I got the news, but for the most part , I think I have settled my nerves down. I don't get to see a specialist until April, which annoys me because I'm ready for answers NOW! I Hate waiting. But on the bright side of things, my PCP doesn't think it's cancerous, so that's good. Just another bump in my road, I guess. But I tell you this, I am really Tired of learning about new body parts. If I had wanted to know all this I would been a doctor or something. But it does make me think that with this knowledge, one day.....it may come in handy. Just wish I could remember everything I read. Half of it is lost as soon as I read it, not to mention that the other half is not even understandable. Don't they have a Dummy's guide to the human body...something with words that I could understand? I don't get half of it. I do try and write down my questions though...and I try to copy the important stuff into my notes. That way, when I'm at the doctors, I at least have a general idea of what he'll be talking about, and if I have any questions, I can ask them, them.

So....in other words, I still really have no clue as to what is going on. I ask myself how much of my 'heart symptoms' are actually thyroid issues, and if they can be fixed with meds. Wouldn't that be awesome! If I eventually became symptom free.....I wouldn't even know what to do with myself, lol.

Still haven't made an appoint with my OBGYN........I'm still wore out from all the crap I've dealt with so far, I'm just running low on umph! I look at it like this. I don't want to go on meds, and I don't want to lose my last ovary either. So, I wait it out, and see what happens. I can live with pain......gives me an excuse to take long hot baths. Mind of matter right. Or maybe I'm just being stubborn.

I dunno.....
I know this much
I'm open to any advice or info any one has on thyroid issues. Any good website recommendations? Any thing I should know about as far as meds go? Anything I should know period? Any tips, books.....Anything? I'd really appreciate any advice anyone has to offer! Thanks!

Until Next Time......

I'm still here......

2010-01-13T08:54:00.003-05:00

Yes! I know, I am long overdue on a post......But don't worry, you haven't missed much! I took the month of December off! I decided that I needed a month of no doctors! No stress! No BS! I'm 'sick' and there's nothing that can be done about that....and all the other little things are just bumps in the road, But Dang it! I need a break sometimes! And if that means staying away from the stress of the doctors, then so be it. I honestly could use another month or 2 to hide, but I'm afraid that if I put things off any longer, I may cause more damage. So....with that said:

I saw my PCP yesterday to catch up and try and get a handle on somethings. When I had my annual exam with my regular OBGYN, she told me that my Thyroid was 'prominent" and that I needed to get it checked out. Well......My step-sister has had hers removed, then My Mom had hers removed this past year....and well, it's just something I didn't want to deal with over the holidays! I can't tell you how many times I have spent the holidays sitting at the hospital waiting on a CT, or blood work, or preparing for surgery.....and well, this year, I didn't want to do that! However, my life isn't really about me, it's about all those people that surround me, and well, I can't let them down. So, yesterday, I got my blood work done, and the doc has ordered an ultrasound to check it out further. Funny thing is I now know where my Thyroid is.....From what I read yesterday, your not suppose to be able to feel it at all......Unless it's acting up~ so maybe now that I've said something aloud about it, it will go away! Honestly, I've felt it acting up for months now, but I honestly made myself believe that I was just having sympathy 'aches' for my Mother.....Or I blamed it on my sinus draining.....Yes, I have been trying to think of everything else, but the worse case scenario....I'm just tired of being cut open.....Really! I'm over it!

And then to top it all off, I can't stop thinking about going back to school. About where my life isn't going. I had so many dreams of what my life was going to be like...and they're all coming back to me. I just don't know how to balance doing something with myself and taking care of myself. It's depressing! I keep telling myself that there's a bigger plan, and that this is how I'm suppose to prepare for it......but it makes my head hurt thinking about what it is that I'm preparing for, ya know! Life!

......and we can't forget about my ovary! Next month I gotta get an ultrasound to see if that cyst has shrunk any....and yet, I don't have a doctor I trust to talk to about it. I like my primary OBGYN~ But she sent me up stream along time ago, because my case was too complex....and I don't blame her! Actually I respected her for being honest with me about it. Yesterday, my PCP told me to go back to her, and see if I can't find a new starting point. I really don't wanna, and still haven't called. I just feel like I'm running in circles....well, maybe crawling in circles would be more like it, lol. Point is, I'm going nowhere fast, and IT'S DRIVING ME NUTS!!!

So, as I sit here and prepare for my next ride, I think. and Think.....and think........
Will I ever be able to get past this?????

Until next time.....

I know...it's been awhile!

2009-11-16T08:03:00.004-05:00

Well.....If you've read my other blog.....You know that my computer was acting up....and I simply unplugged it. Electronics really stress me out...Other than knowing how to turn one on......I just don't get it. And then I also just didn't feel like talking.

My Grandmother passed away on Oct 22....and then began some family drama, that I really wanted to avoid. I just don't think some things need to be aired all over the web...Yes, I know I've shown pictures of my body that know one else would show...but when it comes to talking trash about a certain family member....I'm just not going to do it! I will say this.....My 'family' is very important to me....And there's some people that I really don't consider Family....and I just think they need to mind their own business! So with that said....I'm moving on.

Grandma was cremated.....And is now back at home with Grandpa. And Grandpa is talking about taking her on a cross country train ride, because it's something that he's always wanted to do! I just think it's so sweet that he wants to do this!!! My Grandparents have been together for 60 something years.....So it only seems natural that he'd take her with him.

And as for my health....Well.....nothing has changed. I went for an ultrasound last week, and I do think they said that the cyst wasn't hemorrhaging anymore, but that it had gotten a little bigger....I just don't want to mess around with the hormone treatments~ After going through 3 heart ablations....I AM NOT trying to mess up any of that work that was done. It scares me. And surgery is just not an option right now~ I really want to keep my ovary as long as I can. So the doctor suggested a follow up ultra sound in 3 months. And let me tell you.......This waiting game SUCKS! I want it fixed now, I am tired of playing with it. I did have my blood check, and there was no anemia.....and they even checked my stool, and there's no blood there.....So that makes me feel a little better.

The doctor and I seem to be bumping heads though about where my pain is coming from......I know that when I have a bowel movement...it hurts like hell, like the bowel movement is sliding across something that is really sensitive. And he thinks it coming from my IBS. LOL< I even took a Valium before I went and talked to him the last time, so I didn't get emotional.....but the conversation we had seemed to go nowhere, and I was crying and having an anxiety attack as I left. So now I guess I'll get a third opinion. But I'm running out of options here. I think I've seen 2/3 of the GYNs in this area in my life, and I've bumped heads with ALL of them. Makes me feel like I'm the one who has the problem, but honestly....no one ever really wants to listen to me. I've been playing this game for years, and have run real short on the energy I have left. I really need to get back on track.....Looks like I have a lot to do, and yet.....I think I need a break. ( LMAO!!~ You know what the shitty part of being 'sick' is.....You never really get a break! You can't run or hide from it......I know, I have Tried...It just followed along behind me! But I can take a break from the doctors, right. So Now I'm waiting.....waiting for the next hiccup, waiting for this cyst to go away.....and waiting for my Umph to come back........

That's about it I guess......With me anyways.....

But before I go.....I want to tell you about my neighbor and her son, Lane. The weekend we took the kids to camp, her son fell and hurt his leg, And when his parents took him to the ER, they found out he has cancer in his leg. Luckily we are right next to one of the Best Children's hospitals...where he has been receiving his chemo, but here on the 20th he goes to Duke for surgery. This Kid is Amazing! Lane always makes me laugh! His parents have a website for him, and when you get a chance......you should go check it out, too!! His link is over on the right hand side of my page...and while you're there~ Look at his pictures(second page of pics I think)!! He was a tank this year for Halloween, and honestly, it's the coolest costume I've ever seen!! Also....please leave him a comment....it's Ok that you don't know him, He just likes reading them! I'll be keeping my fingers crossed for the family this week, they have a long road ahead of them!! My prayers and thought will be with them!!

My Grandmother

2009-10-17T13:19:00.007-04:00

My Mother called earlier today to tell me that my grandmother is not doing really well, and they have asked for the family to come. She had surgery on her bowels about a month ago, and never really fully recovered from the surgery. She's had colon cancer twice, and lived through that! But now that she's older, her body isn't holding up as well as we would like it to. My Mom has told me she will fly me out to California when I'm ready....but I told her, I should probably wait until Monday, and get a doctors clearance before I fly. I get really sick when flying, and I want to make sure I can handle that. Among everything else.

Grandma is 86, I think, and has been married to Grandpa for over sixty something years. And I don't think Grandpa knows how to deal with this.....he's always had her with him! It's so sad when you see older couples that have been together forever, lose one another. She's my Last living Grandmother.

....And I can't be there.....yet! Hopefully by the grace of God, this is just a hiccup in the road, and Grandma will be back to normal in no time, but I fear the worst. Time will tell........and until then, all I can do is wait.

**Update**
So time is starting to run together and I'm not sure where I last left off. But this is where we are at today. Mom called last night to tell me the doctor had been by and that Grandma was now in a coma. He told the family that she would probably pass on during the night...if not the next day. It is now Thursday the 22nd of Oct.....and because of the stupid time difference, I have to sit and wait another 3 hours before I can call my Mom. Not to mention the fact that I'm still waiting on the doctor to call. THAT has been one big mess!!

So, I was trying to get in and see the 2nd OBGYN, to get her opinion about the cyst....And then her Secretary called me Early Monday morning to tell me that she (The doctor) had the flu and would not be in the office that day. So then I called my PCP and made an appointment.......and while I was at that appt, I got him to run a few basic tests. They're checking my blood to make sure I'm not anemic....and they now have a stool sample to check for blood. However that was Tuesday...and the doctor told me he was going to call the 1st OBGYN to see what we could do to get my appointment moved up. And he said he'd either call me that afternoon or the next morning to let me know. And well....I'm still waiting. I'm guessing the blood work hasn't hit his desk yet, and considering that this is the beginning of flu season, they've been really busy.

Like I said..... I'm waiting........waiting for the doctor to call and tell me I'll be fine, so I can get on a plane and go be with my Mom before she breaks down. I know I've missed the opportunity to talk to Grandma, but I also know My Mom needs me there right now, even if she says she don't. I'm her only child......and she's my world!

Needless to say.....I am REALLY frustrated with things right now...and I just don't know what to do. Really, I am not trying to whine here about something that might seem so simple to someone else...I'm just not trying to cause anymore drama for the family.

Is it just me??

2009-10-15T06:55:00.004-04:00

Or do you get really annoyed when you show up at the doctors 30 minutes early to fill out paperwork, for someone to then come out and tell you 30 minutes after your appointment that the doctor is running an hour late????? Ya know, I am really getting tired of this whole game you play with being 'sick'. I understand that there is thing called emergencies, but darn it, when you piggy back patients every 15 minutes, that doesn't give you anytime for emergencies....and some of your other patients, who might not be in a dire emergency, but really need to talk to someone, are left to sit and wait. When the receptionist came out yesterday and told me the doctor was behind, I asked her if I could come back or could we reschedule....and she said she had to ask the nurse. And the nurse said something like if I wasn't back when she called me then I wouldn't get seen. NOW......would it really be that hard for the nurse to WORK WITH ME??? Seriously, I can barely sit for an hour without my legs going numb.....not to mention the pressure that I get in my abdomen from sitting...so no I'm not going to sit in the waiting room forever waiting.....I'll come back! So we rescheduled for Monday. Hopefully it goes a lot smoother then! BUT DAMN Am I ANNOYED! Really, I'm tired of this shit! I'm tired of waiting.....I'm tired of thinking. I'm tired of taking a Valium just so I can get through shit without going postal! If I could get my head to spin around, I would...and then I'd ask them...CAN YOU HEAR ME NOW???

I did manage to ask if they had gotten my other records, and they have.....so I guess i can forgive them for the whole time management thing........So, keep your fingers crossed that I can get a little further ahead on Monday!!

Oh....and while I'm thinking of it......I really need to find another head doc. I thought I could do this on my own.....but I'm just not that sure anymore!!!! I really, really miss Linda!!! Damn you for retiring, LOL!!!!!

I knew I wasn't Crazy!!

2009-10-13T18:47:00.004-04:00

So....When I had my breast surgery......I remember waking up in the post op room, and looking up at my vitals.......and I remembered seeing that my temp was 94 point something...............But when I talked to the surgeon after surgery, she said that she didn't remember anything about my temp dropping and that if it was 94 degrees, I'd be dead...........And I figured since I was just waking up from some surgery, I had probably misread something or something. But my instincts told me otherwise..........So last week I went down to the records department and requested copies............And today, they came in the mail...............And WELL.......I couldn't feel better. See, I had read it right!! And just in case you can't read the numbers......they were:
91.1 at 9:30
93.3 at 9:35
93.7 at 9:40
and
94.1 at 9:45
.....and I'm not dead!
So, unless there is some other explanation for this.........I might be on to something here. Don't worry....this is just another one of those things that goes along with having Dysautonomia, I think, but I'm wondering if anyone else with this has ever seen the same pattern with having surgeries? Any anesthesiologist out there seen this in another patient? Just wondering....

But I will say this one more time before I go....
It's so good to know that I'm not crazy, and that I wasn't seeing stuff. And feels even better to be right, lol! Can I do my happy dance now??

Oh....and while I have the report in my hand....

My mass biopsy report reads:

"Focal biopsy site changes with stromal fibrosis and fibroadenomatoid change"

and that simply means.....Benign hormonal changes....((i think))

OK.......that's enough excitement for one day:)

Until Next time....

Update on that stitch

2009-10-12T18:30:00.004-04:00

If you read my last post, You'll know that one of my stitches was giving me problems......so....I did my homework, looked online enough to learn what they are, and how long it should take for them to go away. And seeing as I have had mine for a little over a month, I figured it was time for it to go. First......let me gross you out and let you read part of what I read:

http://health.howstuffworks.com/question611.htm
To your body, stitches are a foreign substance, and the body is programmed to destroy foreign substances. Dissolvable stitches are made from natural materials, such as processed collagen (animal intestines), silk and hair, ((OK, Now that's just nasty!!))as well as some synthetic materials that the body can break down. This allows the body to dissolve the stitches over time. Usually, by the time the stitches are dissolved, the wound is completely healed.

Occasionally, a stitch won't dissolve completely. This usually occurs when part of the stitch is left on the outside of the body. There, the body's fluids cannot dissolve and decompose the stitch, so it remains intact. A doctor can easily remove the remaining piece of stitch once the wound is closed.

So, first thing this morning, I called the dr. office and spoke with the nurse who told me to come on in, and she'd pull it out for me. So, off I went, was there all of 5 minutes........and she pulled most of it out, and cut it. She said that my body would either dissolve the rest of it, or it would push it out. Fun! I will say, my boob is a little sore, and the area is a little red. So I will keep me eye on it and see what it does. Time will tell, huh!

And while I'm here.......I've also been doing a lot of research on information I will need to make the final decision on hormones/verses surgery. I will say this I DO NOT want to go back on Lupron shots- it shuts down your cycle and throws you into a temporary menopause. I have to done 2 cycles of these in the past....and from what I've read, I should of only done one cycle. There's some more tests I want run.....for example, a simple blood test to check and see if I'm anemic. I know when you bleed internally, that it can cause problems, and I want to know if mine is causing this kinda problem. I also need to get a bone density test done to see where my levels are with that. With those 2 cycles of Injections, I was suppose to get tested and I never did, so I'd like to know where I'm at to see how much damage there is, and if I can handle any more damage. Am I making sense.....I sure hope so. See, this is what goes on in my head.......Questions, questions, questions. But, I have them all written down, actually they're typed up now.....And separated into 3 sections. One is general questions that any OBGYN could answer...another section for hard questions, that I think only the Professor Dr could answer, and another section for all those weird symptoms I'm having. I also have lots of little notes written in the margin. I want to make the best out of the time I get with these doctors so I can make a very informed decision as to what I want to do.

I do know this much. I really don't want to try hormone therapy again. It only post-pones the final decision, and there's no real benefit to taking it other than to hopefully shrink the cyst, and from what I've read it really isn't meant to be used for treatment of cysts. I'm really not ready to lose my only ovary, however......this thing hurts. And I truly believe that my bowels are somehow involved. And I'm really not trying to go through what I went through back when my insides came out. No one has been inside my abdomen since that surgery, and I'd be curious to know what kind of damage having that Foley balloon in my abdomen for a month could of done. I've got so many questions, my head hurts!!

So......until then I will keep trying to read every thing I can get my hands on. I want to make sure I am making the best choice! Well, the best choice for me that is!

OK....until next time:)

....Oh, and one more thing. I know a few of you out there have read my blogs enough to know that this surgery was number 18 for me. And yet, I've never had to have stitches taken out! This was a first for me, mine have always dissolved......and most of my surgeries were laproscopic, so my incision were really tiny. As they say, there's a first time for everything!!

Pictures of my scar.....

2009-10-09T20:26:00.004-04:00

So...

At first, I wasn't going to share these, I felt it was a little too personal to post 'online'. And Now....well, it's gotten a little weird, so I thought what the hell........ Plus, if you ever need to have a mass removed and your in the Tidewater area of Va....I can recommend a great surgeon, just email me! She does really great work....remember now, this is my second surgery......she went right over the original scar, and you can't even tell....

So...Here's day one. Bruising hasn't started yet....But everything is swollen!

...one week post surgery, and everything started bruising up.

And here we are 1 month post surgery, and my scar looks great! Well....except that little white thing over there on the right. It's a dis-solvable stitch that doesn't want to dissolve. Last night I was scratching what was left of my scab.......

and this came out.....

Kinda looks like thin fishing line. Anyways....I scratched one out...and I seem to still have one stuck in there~ the one in the picture above. Kinda new to me....not to sure what to think of it....it's just weird and it itches. We'll see what it does over the weekend and if it's still there Monday, I'll call the nurse to see how long before it actually dissolves or see if they can just pull it out. I have tried to pull it, but it seems to be in there pretty good. And I'm really trying hard not to mess with it....but it itches, darn it!

And on another note.....cause I just feel like complaining right now........ My freaking insides are killing me! Lots of pressure, and pulling. I go Wednesday to talk to the '2nd opinion doc', and I've got my list of questions ready. Hopefully I can get her to run some tests, so I can be better informed as to the decision I have to make. I want to know whatevery thing else is doing, so I know how much this cyst is effecting me. I will be back with that list when I get it written down....for now....it's still in my head. So.......

I'm off to go write down whats on my mind before I forget!!!

Talk to you soon! :)

"I told you so....."

2009-10-01T19:19:00.003-04:00

I guess the best place to start is as the beginning right........

So, Monday.....I went and saw my primary care Doctor.....and caught him up to speed on what I've been up to. We also discussed my abdominal pain, and he agreed with the direction I want to go......And suggested that I get a second GYN opinion. Well, I know how this game is played, and I had already made an appointment with my regular GYN.......I'm due for my annual, so thought I'd talk to her while I was there about what she thinks. My PCP is also requesting my records from all these ultrasounds so he can take a closer look.

Tuesday.....I met with the breast surgeon, to follow-up from surgery. My test results came back benign again:) Seems this time is was the beginning of a tumor, but not the same kind I had the first time. This doc talks super fast......and I tend to miss a lot of what she says!! She did something about it just being normal hormonal changes. Hopefully tomorrow, I can go request these records, and when I get them back, I'll let you know what term they used. My scab has almost completely fallen off, and the scar is looking great!!

Wednesday.....I felt like Crap! My insides hurt, and I ended up with an awful migraine.....So I slept most of the day.

And today I went back for my follow-up ultrasound........and guess what......That cyst on my ovary is still bleeding!!! Well....duh!!! I so badly wanted to say.."I told you so!!" But I didn't. Luckily I remembered to take a Valium before I went in, so I was on my bestest behavior! So......Where do we go from here??? I have 2 options.......either I go back on hormones/ birth control to control the growth of the cysts.....which I really don't want to do. I have been on these types of medications before, and it was no picnic.....plus I truly believe that it was one of the triggers for my heart acting up. So, I'm really scared about going back on them. My 2nd option is another surgery. However, because I've had so many female surgeries in the past, this surgery will be tricky. And, if they get in there, and if my ovary is bad enough, they'll have to remove it, and I'll go into early menopause. And, well, I don't think my heart can handle that either. So once again, I'm lost. I have no idea what the hell to do anymore.....and quite frankly I'm tired of making all these life altering decisions. I just want to live. I just want to get on with my life, and yet, there's always something holding me back.

And yet, on the flip side.......I'm doing my homework on this one. I've been trying to read everything I can get my hands on, and I'm taking notes! I also have a list of questions that I can't find the answers to else where, and I plan on taking these with me to both GYNs. I see my regular one next week......and then I go back to the Specialist in the beginning of November to talk some more. (This was his first available appt, so I had to go with it.) But, it gives me time to get my second opinion......and check out a few other options, too. I'm determined to get to the bottom of this!!

And once again, I prove to myself that I'm not Crazy, Woo-Who!!!

2009-09-25T08:23:00.002-04:00

For some reason, I'm having trouble with my words this morning, but I feel the need to talk....So here goes my confusion......

Let's see...first off....I went back to the OBGYN for a follow-up, and after, I really questioned myself why I went at all. First off...it's a teaching hospital I go to, so the first thing you get to do it go through your history with a complete stranger, and if you've read my blog at all, You know this is No quick story....So after I get done talking to the student....I get to talk to the doc. And he tells me, it's probably something called IBS. And that he didn't know what else to tell me. Well, I tried real hard to hold myself together as I tried to explain to him that I have had IBS since I was a little girl, and that I know what it is, and this isn't it!! We seem to have a little miscommunication problem, because we went through this whole conversation again, me Reminding Him again that I know what IBS is and that this is not it. Now at the time, I was so pissed that anyone would try and explain to me what something is....something that I have had MY WHOLE life....and they have only 'Read' about in some book, That I overlooked the big picture here...........Maybe this abdominal pain I'm having does have something to do with my bowels, but in no way is it IBS! I have been hunting down my reason for abdominal pain for years now......And I have learned a few things....and Yet, I'm completely clueless....or am I? Also...a year ago, I saw the GI doc, and had a colonoscopy...and everything looked OK.....So We assumed it was my bladder, and off to the Urologist I went....he did some tests....and after I read the results from a CT, I felt the need to see an OBGYN. And now the OBGYN is telling me I need to see a GI doc. And back around this circle I go!! Welcome to the story of my life.

So.....as I broke down in the doctor office last week, We agreed that I would have my follow up ultrasound, and then go from there. My appt is for next Thursday...so we will see.

My real problem, is that I hate it when a doctor just gives up. Or at least I don't want to hear that "You don't know"....What kinda shit is that?? At least help me figure out what direction to go in. Run a test or something, but don't just give up..... CRAP......and like that the words are gone......lol

OK, so...I went to the library yesterday, and tried to find a book on the Autonomic Nervous System, and had to settle for a book about the central nervous system that contained a few pages about the ANS. And not one book that I looked in contained anything about Dysautonomia. Sad, huh! I was really on the hunt for how the ANS effects the reproductive system. Just wondering how the 2 work together. And well......I still don't get it. Didn't find what I was looking for, and If I did, I didn't get it. Damn terminology! If I did get it, I'd go to med school.....and do it myself. So, that's where I need the doctors help......right?

LOL~and now I'm confusing myself. There's a point in here, really there is! So.....Next week, I go in for my ultrasound, and assuming everything is back to normal....then I can go see my family doctor and see if we can't start from the beginning again. I haven't seen him in awhile anyways......so it's about time to catch up. And I really need to get a new head doctor.....the one I have had for years retired, and I've been putting it off, but I know the time has come where I need the support again. It's time for my annual, as well....so I need to take care of that. Even though I don't have a cervix or uterus anymore, I still have to get checked because I once had dysplasia. Plus it's good to check in with my regular OB every now and then.....maybe she can point me in a new direction?? I also need to update my records, and get get copies of all the testing I've had done in the last year.

Oh....and I had to push back my follow-up with the breast surgeon. My car died last week, and I couldn't find a ride to the appt, so we moved it. I believe it's for this coming Tuesday now ......

.....and the point.....

It's time for me to get my butt in gear, and just do it. I just wanna get ahead of this game!

2009-09-13T16:25:00.003-04:00

.....next time I have surgery......I'm sending the kids, the bf and the cat to my Mom's for the week so I can get some rest!!! LOL! Either they're hungry, they can't find something or they need me to come look at something. LOL, Why is it when your not well, kids try and see how many times they can get you out of bed?? Last night I finally threatened them with sentences...Yes, I make my kids write for punishment!! Then this morning I decided they were going to go and do manual labor instead!! :) My neighbor now has a nicely mowed yard, free of charge!! But, it's ok....Tomorrow is Monday and they'll all be in school, so I'll have a day of peace and quiet......maybe......still have that cat of mine to deal with:) You know Otis has been trying to sleep on my chest all week! LOL, 20lbs of fur ball does not feel pleasant sitting on your fresh incisions!! Especially at 4am in the morning!!

So, I'm feeling ok. The incision is starting to itch and I was finally able to take my bra off today. I know....you really needed to know that, huh. But, for real, I HATE BRAS!! I'd never wear one again if I could get away with it.....but I can't......Wouldn't want to embarrass the kids or anything, LOL!! But Seriously~ It was so nice to finally take it off and let my babies breathe! (In case you wondering, I've been wearing it 24-7 since I had surgery, per doctors orders!)

OK...That's about it for now.........Just wanted to vent about the kids and let ya know I'm much happier now that I'm 'free' LMAO!!!

:)

Dysautonomia, Body Temp and Surgery.

2009-09-10T16:04:00.006-04:00

OK....So yesterday, when I had surgery, I was surprised to see that they have a new policy where they have to monitor your temperature during surgery. It's this little disk that has a sticky side that they put in your armpit, and it has a cord that attaches to their machine. I had no irritation with it, so that was nice. But here's the thing. I do remember waking up after surgery, still really 'high' and looking around the room. And I do believe I was reading the monitor that had the recordings from surgery.....and if I'm right, my temperature dropped to 91 degrees. I'm definitely going to have to see if I can't track those records down, cause I'm really interested in how a dysautonomia patient differs from a regular patient on the OR table. I know I have internal temperature issues.....and I've been told I sweat on the OR table. I also get the night sweats, and my under arms always seem wet.....and I've even tried prescription strength deodorants with no good results. I sweat if I'm too warm, and I sweat when I'm too cold. So, back to surgery........last night, I decided to do a little research on line to find out what happens with your temp when you have surgery, and I found that it does drop a degree or 2, but that's it. Anything under 95 was considered hypothermia~ feel free to correct me if I'm wrong!

OK, so before I forget....the anesthesiologist knew what dysautonomia was!! I must say it was nice not to have to explain it.........

So here's my question......how do patients with dysautonomia differ from regular patients when they are on the OR table. Has anyone else ever experienced any of this? Have any doctors ever experienced other patients with dysautonomia doing that in the OR? I'm just curious to see how it works for other people.

On another note....I'm doing pretty good today. My breast doesn't hurt anymore than it did before surgery, so that's nice. And actually it probably hurts less now than it did before. Hence, that's why I went ahead with this, cause I'm tired of the pain it caused me. So hopefully, this is all signs of good news:)

Surgery went Fine!!

2009-09-09T14:11:00.002-04:00

So, I'm home....and doing good. Surgery went well....the surgeon feels like she got it all....so we will see. Did you know today is 09-09-09.....And in the world of numerology...that means completion! So...hopefully this is the last time I have to mess with this issue......And I didn't lose to much of my Boob!! Woo-who!! And this surgeon is really clean......the scar I had from last year you could barley see this year....so hopefully this scar will do the same. For now though, my boob is covered in superglue~ no stitches that I can see, which also helps with scarring.....The doctors 'super-glued' it together, not me:) And well....other than the charge nurse recognizing me......LMAO~ People should not look familiar in the OR, LOL! So......I'm off to go eat some soup......and sleep

Talk to you soon!

Cleared for Surgery:)

2009-09-06T19:08:00.003-04:00

Just wanted to say I got my cardiac clearance for Surgery on Wednesday. I knew I would...and actually the doctor told me he had already sent them a letter, but would send another. Tuesday morning I plan on calling the doctors office to make sure they have received it, and if not, I'm going to drive back out to the heart doc office and get a copy myself. Hopefully though, they already have it, and I can relax and mentally prepare for surgery.

So, the original reason I had this appointment was to discuss a new medicine. The last time I was there, he said he had some medical journals sitting on his desk that he wanted to read, and asked me if I could come back in a month. We were talking about switching medicine to see if it would help with my symptoms. So....when I went in the other day, he had read the materials and told me about what he found. This new medicine is a beta-blocker? that seems to be making a difference 'in people like me'......However You can't get it in the USA. I think he said it wasn't approved by the FDA yet......but encouraged me to find out what I could on it. I have not yet, but hope to soon. The medicine is called IVABRADINE....and this may be the generic name. Once I find out more, I will let you know. but if there is anyone who knows about this or anyone in the UK or Canada that can find out anything on this for me, I would greatly appreciate it.

Ok, That's it for now. I'm sure I'll be back soon.
:)

Surgery has been rescheduled! UGG!!

2009-09-01T11:45:00.003-04:00

So! Remember when I said, 'If all goes as planned'.......Yeah! I knew this was coming, but for a moment I thought that maybe something would go smoothly in my life. So the other day when the anesthesiologist nurse called to ask me the routine questions...we got into a bit of a disagreement. She was asking me questions, that I assume now, were meant to have Yes or No answers...and well...nothing is yes or no in my life! She asked me if I got out of breathe walking up 2 flights of stairs, and I said sometimes. Sometimes I do get out of breathe, it just depends on the kinda of day I'm having. She asked if I ever get chest pains...and again my answer was sometimes. Sometimes I do get wicked chest pain.....most days I do not. But I can't say simply Yes or No. LOL, She kept telling me they were not acceptable answers, and I asked her if she wanted me to lie to her or something?? So, then she told me that I might need Cardiac approval to have surgery. Now, I've never had surgery at this hospital, and that was weirding me out to begin with...but now the nurses are giving me crap over my heart. I have a healthy heart, it just has electrical problems. *Oh, and when I told her I had 3 ablations on my heart, and now it was going to fast, she told me that ablation were suppose to fix that problem. It really annoys me when people assume they know everything about the human body. There are a 'few' of us out there that have these dysfunctional bodies, and can Not be put in the same classification as other people. And I for one, do not have the energy to sit on the phone and re-educate these people. But part of me wants to have access to something that is printed that can be sent to these people to better understand what Dysautonomia is. Just wondering if anyone else who has this, ever runs into problems with people who think they know how it's suppose to be?!

So, When I didn't hear anything back from the hospital, I naturally assumed they had what they needed....well, until my doctor's office called me late yesterday evening to tell me that the hospital wouldn't do surgery until I had a letter in writing from my heart doc. Good Lord! Luckily I have an appointment Friday with my heart doc......and now my surgery has been pushed to next Wednesday...at a different hospital, btw, lol!!! If they don't feel 'confident' I don't feel confident! And I will go somewhere where they know me!

Number 18

2009-08-28T09:24:00.005-04:00

Well....if all goes as planned.....Tuesday I will be having surgery to remove this 'mass' in my breast. I spoke with the surgeon yesterday, and told her I want it gone! I'm done messing with it!! It's just one more thing that drives me batty! However, It does suck that I'll be losing another chunk out of my boob! Not really trying to get emotional over it at the moment.....actually trying really hard to not think about it.

So......I once had a doctor tell me sometimes 'You have to pick your poison!' And at the time I really took offense to it. But now....I think I understand. Sometimes....neither option sounds good, and you have to choose the lesser of the 2 evils. I fell like I am making the right decision......Time will tell, huh!

You know.......2 weeks ago.....My Grandfather had surgery on his shoulder......This past week......My Grandmother had bowel surgery. (Both are doing good btw!!) Grandpa's been getting into lots of trouble cause he's Not suppose to be driving....and he's been the one taking Grandma to the hospital....Until the 'family' found out that is, lol. And we won't talk about a certain someone in the UK who's got me thinking about her upcoming heart surgery! .......I'm used to having surgeries....But I'm not use to every one else having them. I worry too much....but Hey....at least I'm not thinking of what I have to do in a couple of days!!

Now What?!

2009-08-21T10:46:00.003-04:00

WOW! Has this been a loooong week! And from the looks of things, next week will be the same:(

OK...I'll start at the beginning for you. April of 08, I had a lump removed from my left breast. At first they thought it was a cyst, but after removing it, I found out it was a benign tumor......and soon after the surgery, I realized, I still had the 'cyst'. So the doctor did some follow up tests, and everything looked ok......And they told me to follow up in a year. Well, a few weeks ago......After an exam done by another doctor, I was told I 'Needed to have this thing removed!' And I laughed and said, Yeah! We tried that once!'

So....Tuesday, I met with the breast surgeon again and Wednesday morning I had my ultrasound. The head tech came down to talk to me....and take a look at things.....she wants me to have another biopsy done, and hopefully this time, they can get it out. It's tricky though...and confuses the doctors....some days it's there and sometimes it isn't. Makes me wonder if there is in fact a cyst in there, under this 'dense tissue' I feel? At it's worst, I can feel a grape size lump.....and it hurts!

Then to top it all off........I had my 2nd internal ultrasound done Thursday. Last week I had the first, and it all happened so quickly, I left confused and hoping that what I had heard was wrong. I have a cyst on my left ovary that is hemorrhaging. And last week it looked really bad. I do remember the doctor telling me he didn't want to rush into anything....and told me to come back for a follow-up ultrasound. That was what I went to yesterday. And it looked a lot better!! I'm still hemorrhaging, but nothing like I was last week. I can't say the pain has gone away though, cause it hasn't.......instead it has almost plateaued. I feel a tugging in my side.....cramping through my abdomen....and I feel like I was whacked in the middle of the back with a Crockett bat. It's not crazy, I'm dying pain....but it's enough to make ya Mad! And it's not constant awful pain.....but it has it's moments and I can always feel it. Now you see this is the only female organ I have left. I had the other ovary removed a looooong time ago, then the uterus and the cervix went.......so I kinda need this ovary. I know I'm asking a lot out of it, but for real for real....Can't we all just get along here??? *sigh

So, Yea! I'm starting to get a little frustrated here. If it's not one thing it's another......and then when I think I have it all in order, something else decides to act up. That's how it is though.......that's the part that's hard to work with. I never know what to expect. Nor do I know how my body is going to handle it. LOL....Or my mind for that matter. I'm not even trying to catch up with my thoughts right now. They're going in a million different directions at the speed of a freight train. I have so many questions, and I don't want to wait for answers! I'm tired of waiting!!! I want to know what it is, how we can fix it...and then I want to be able to move on. But NO! LMAO.....I get to do it, over and over again! Um Hello! I don't need anymore t-shirts!!! Hahaha........
So with that being said, I'm done with my pity party now.
Until Next Time.

I needed a little pick me upper...

2009-07-28T21:09:00.011-04:00

Well........
Let's get caught up....

We'll start with the heart doc. I saw him a few weeks ago......just felt a little confused when I left, and really didn't know how to explain it. When I saw him last, he must of been in an 'experimental' mood, because I do remember talking to him about the surgery(ies) and him telling me to bring my family with me the next time I came, so he could talk to them about it, too.....But when I went to see him the other day, he didn't think surgery would be good at this time. Let me explain why (at least this is why I think why)......1. There's no guarantee that it will work, or that it will last. 2. The meds I'm on right now are controlling my heart rate pretty well, but make me feel like crap~Tired and Lazy feeling, Sloth like.....but they're doing their job, most of the time.....3. This surgery would only fix one symptom...and not everything. 4. I've already had 3 of these kinds of surgeries, and he doesn't want to put me through any more unless he can promise good results. And 5........the said he had recently gotten a bunch of new information in, but hadn't had the chance to read it yet......that there was a new medicine out that had less side-effects. He wanted to be able to get this stuff read, and told me to come back in a month so we could talk some more. So, Yea! I left a little confused, but like I said, I see why he's doing what he's doing........My next appointment is Sept. 4~ His 'first available'.

I also met with the new OBGYN. He told me that the ovarian vein wouldn't be able to 'compress' any of those things around it. Told me that this 'Pelvic Congestion Syndrome' is something that they label you with when there's nothing else to say. Nice! Although I understand what he;s saying, I still can't help but to wonder. So, dropping that and moving forward.....He's ordered an ultrasound, which will be done on Aug. 13th, followed by another appt with him. Yup! It's always a waiting game, isn't it!! He felt some strange things in my abdomen, so I'll be curious to see if it's anything, or it was just a fluke?? I did get him to check my breast, and he told me I really needed to get this thing removed......I laughed and told him, I had tried....and that it was a cat and mouse game. It swells up and then goes away....and it always seems to be MIA on the days I see the surgeon. But it hurts, and the pain radiates through my chest. I know it's boob pain and not heart pain, cause the only time I get this kind of pain is when it's swollen......So I called and made another appointment with the breast surgeon for August 18....Hopefully We can solve this problem soon, Cause I am Damn sure over it!!!

Let's see.....I had my last appointment with my 'head' doc Friday. She's retiring.......and Friday was her Last day. I made sure to take a 'happy' pill before I went and saw her. No way was I going to sit through our visit and cry!!! She's been my savior over the past few years....almost 4 and 1/2 years actually!! She's been the one to back me up, and remind me that I'm not crazy......When I felt like I was bothering the doctors about something, she told me to bother away.......I don't think I would of had the drive to seek the answers I so desperately needed! I don't know what I would of done without her!! I hope she knows how much she helped me get through all this shit! It was nice to have someone one my side through this whole thing. She has seen me go through the worst of times, she was there to let me yell and cry about how much it sucked! I will forever be grateful for her support!!

I'm a little nervous to start over with someone new, but I do think having someone to vent with helps. Family and friends can only take so much before it overwhelms them. And I need someone to complain to, lol!! So....my new quest of finding a psychologist begins.

Oh...and while I thinking of it......the OB suggested trying Prozac to help with my females problems. First, we have to check and see if it will have any bad side effects if I use it with the meds. I already take. He says studies show that it helps with female cramps, night sweats, ect. I'd do anything to get rid of these freaking night sweats! I hate waking up soaking wet everyday. It's ridiculous!! I only have one ovary left and he wondered if maybe it was working for both. Tests and time will tell.....I like this guy, he seems to be covering all his bases with me so far....He did pick up on my high anxiety though...lol......I can be a little wiry some days. And that day I was totally amped!! LOL....I do like being hyper~ helps me get things done. Without it, I might curl up in a ball and call it quits! But then again...it has it downfalls too......cause with every high......there's a low.....And I'm sure that here in another week or so, I'll be crashing and sleeping lots!!

I do have to admit. The reason I'm on this high, is because I totally overdid it this past week!! I had to take my kids to camp...and it's an eight hour drive both ways. No way can I sit that long, so I plan little trips along the way that involve lots of walking....I have to do something to get the blood flow back in my legs. 2 hours of driving and my legs are totally numb...I have to rub them, and keep them moving or they misbehave! So.....I make sure we stop, get out of the car, and enjoy life. This is the only 'vacation' I get every year, and I try to take advantage of it. I try and plan activities that I know I can do.....anything that involves just walking, and I'm there....I am finding out though, that I can only walk for a little while before I want to sit down and take a breather. But that's OK, cause I'm the official picture taker, so I can sit back and watch everyone else do stuff. Another thing I've learned is that I don't get hungry when I'm in this state of speed...nor can I have a BM. Guess you could say that my body is too tense to relax enough. I do, however, make sure I drink lots of Gatorade and this time I ate salty peanuts and Cheez-its.
It sucks cause I wish I could leave this illness at home when I went on vacation!! I get so dizzy going through the mountains...and this time we went almost all interstate, and I still got drunk! And the elevation change gave me a migraine. I had to take a Tylenol first, (Yes! I know...it's so simple, but when your 'allergic' to all the good stuff, you learn to deal with the simple stuff. Or try to deal with it.....).......the Tylenol didn't work, so I ending up taking something a little stronger and was finally able to fall asleep. I don't sleep well when my body is on overdrive, either, So I found myself back awake when the sun came up, with a mild headache....and another full day planned out. Once we came out of the mountains, my headache went away.....Until I got home. Now my allergies are acting up, but they're livable:) I'm starting to come done. My bowels finally relaxed enough to do what they needed to do, but have gotten a little to overwhelmed and my IBS is kicking in. Still not 'tired' yet.....I'm sure it will come though....it always does.

I think I'm also on full speed because I might be on my cycle. My breast is swollen, and I'm having the night sweats, my inside hurt...so hopefully over the next few days that too will slow down and I can get some much needed rest!! This is how it is............It's like a roller coaster, only mine last for days at a time!

However! I needed this 2 day trip to recharge myself. I just can't help but to sit along side that river and absorb the energy that came from the passing waters. I can't explain it, But I can say....it's the little things like this that make me want to keep going. Mother Earth's beauty is so powerful..........She has so many wonderful things to offer us. Better than any pill I could take! Just to sit out there and breathe........ Totally amazing!!!

And with that said....I think I'm done. For now anyways.......lol......

I can't stop Yawning! *sigh...

2009-07-12T21:14:00.005-04:00

I figured I better get in here and dust this place off before someone thinks I've run away!! This happens a lot. I get into this funk, this weird feeling of blah. Nothing really makes me happy....And sleep seems to be the best place to be! No, I'm not losing it or anything.....I'm just tired!

So....Let's see:

I returned the heart monitor a few weeks ago. I really think the PVCs I'm having are hormonal, but without that 'friendly little reminder' to go along with it, I'm not exactly sure. I had the monitor for three weeks, and it wasn't until those final days that I finally caught 2 skips. I will get the results when I go back on the 17th of this month......and now that I'm looking at the calendar...that's Friday! Dang it....can't I put this off any longer?? I'm still really undecided about whether or not I want to try surgery again. I have tried meds, and I hate feeling like a sloth everyday! I hate feeling this unmotivated!

..........now that I've gone back and read what I first wrote.......I'm saying Duh to myself.....the funk comes from the meds, Duhhhhhh!!! OK...back to what I was saying......To do, or not to do, that is the question! LMAO and wanting to cry at the same time...Isn't there someone (Like a fairy Godmother) that could just tell me what the right choice would be????

I'm sorry if I'm not making sense.....it's just the way my brain thinks.....Jumps from one thing to another, so I will write as it comes out.....lol......

Had my Cystoscopy this past week, and lived to tell about it. I took a Valium an hour before....and did pretty well considering I hadn't had my heart meds in about 4 days cause I couldn't get the freaking doctors office to call them in over the holiday weekend......*sigh.....back to the cysto.~ So.......the procedure lasted all of about 5 minutes, once they were finally able to get the cath in. I asked the nurse if they wanted me to give them a urine sample when they asked me to first empty my bladder, and they told me No that they'd get a sample when they got in there (in my bladder)........However, she was unable to do this, and did make the comment about how "She'd never not gotten a sample before???'....So they doctor came in and tried again, but was still unsuccessful......? Not to sure what that was all about, but OK?! They filled my bladder full of saline solution and looked around. During this part I told my doctor "Not to talk to me, cause I was going to pretend I wasn't there, lol" I just stared at the ceiling, did my breathing exercises....and kept telling myself it would be over in a minute. It doesn't hurt per say......but it is Really, Really uncomfortable. Like you have to go pee so bad you feel like your bladder's gonna burst. And it burns......but like I said......it's all over before you know it. I did have to go back a few days later to give them a urine sample, but will have to wait on the results. My bladder looked good:) Just some inflammation on the upper side? of it. No big surprise there........

I've been trying to just drink water or milk lately....the Gatorade was getting to be too much....not that I really drink a lot to begin with......but I was trying to get my numbers up. Especially since it's summer and I sweat more. Gatorade does help! But it kills my bladder! I can tell by my urine color, though....that I need something more than water. Oh, if only I could find something that hydrates that didn't contain citric acid. I just can't stress enough that diet controls so much of Interstitial Cystitis...one day I need to come back in here and discuss this more......and tell you all the things you shouldn't eat when you have IC!

I did ask the urologist again about the ovarian vein being a little too big on the cat scan, and he still says it isn't anything to worry about. But to give me peace of mind, he's referred me to an OBGYN. It's just that the more I read about it, the more it makes sense to me.....Or maybe that's the problem, That I want an answer, and that I'm looking to hard? I found a picture of where the vein is located.....in case you were wondering, lol. Looks like it runs right next to the ureter (the part that brings urine from your kidneys down to your bladder) and then past the ovary......and I actually still have this ovary, and it tends to cystic.......looks like it runs next to the ovarian artery, too.....wonder what that has to do with anything? Time will tell! And as you can see, I'm determined to figure this out!

So, all in all, I've just been taking it easy. I've been working on my organizing my medical records and researching things. Trying to put 2 and 2 together, ya know?!

My IBS has been acting up more than normal. My left leg has been cramping up on me. I've been sweating my tail off at night! Which reminds me.....I have a funny picture to share with ya'll later! My breast cyst wasn't too bad this month.....made it kinda nice:) ((I'm thinking last month it burst, or leaked out or something, the whole side of my breast was swollen and tender, not sure what happened, just guessing really.)) And I've been sooooo tired! Taking 4-5 hour naps every afternoon. But I'm here.......I'm still here:)

2009-06-23T12:02:00.002-04:00

See, I knew once the doctor got the message that I actually wanted to talk to him, that he'd call......and he did. He says that the ovarian vein is no big deal, and that is shouldn't be to blame for what's going on....So, see I was worrying myself about nothing. Or at least I hope I was....I still have that strange feeling that it has something to do with something...But I need to just give myself a break and trust the doctor. Not matter what, time will tell, and the just of it will comeout. It always does. So I guess....I just gotta sit back and wait for the cysto. July 7th is my new appt date.

Making a mental note here....

2009-06-23T10:22:00.003-04:00

No phone call from the doctor yesterday....and then this morning my 'favorite' nurse calls to tell me that the doctor does still want to do the cysto. because of the blood in my urine. OK, not exactly what I had in mind.....I was really hoping to talk to the actual doctor!! I asked the nurse if this meant that he himself wasn't going to call, and she said that he had just left her a note saying this.....So I told her never mind, and that I Guess I would have to find another channel to go through..and then I hung up. I'M REALLY REALLY ANNOYED AT THIS POINT!! So annoyed that I am afraid I can't talk about it! Wouldn't want to say anything that might come back to haunt me later:)

So.....I'll be back when I have something nice to say!

...woke up wet this morning from the night sweats, and my heart monitor connector thingies were totally in the wrong place.....When you sweat they slide, lol! .....and I have some kind of pinched nerve running down my left side into my leg. And we won't even discuss that my heart feels like it's going a million miles a minute~ betcha can't guess why, Bah hahahaha...

OK...this time I'm really outta here.....
Until Next time....

And today I'm rambling on about life.....

2009-06-22T09:58:00.003-04:00

I must find the humor in this, if I want to move forward. Don't you love when your body plays tricks on you. Let's take my heart for example. Last month, and the month before that....actually going all the way back to Jan....I've been feeling PVC's. Not like before, but enough to know that I'm having them........So I talked to the heart doc, and have been wearing a 21 day event monitor to catch them. But wouldn't you know that since I've had this stupid machine on....I haven't felt a single one! So annoying, but it's nice to not have them, too. However, I was hoping the doctor could check out what I'm talking about. I know by know I'm not going crazy, that it's just my body doing what it wants to when it wants to. But it still makes it all so confusing!!

Most people run fevers when they have an infection.....I do not. Most women have that friendly little reminder every month to remind them that they're a woman.....Mine does not. And this makes it hard to track my cycle. I'm left to guess. I need to figure out a way to track it, so I can make an appointment to get it looked at again. It's been nice this past week....No night sweats, and no painful breast cyst or chect pains. I'm guessing this week will not be the same.

OK....enough babbling...........I'm off to go wait for the doctor to call......That's if my favorite nurse didn't forget to give him the message! Then again, she could have, and maybe he just has a busy morning! See what happens........Your left to make your own assumptions, and depending on which way your twisted mind works....You can really worry yourself. My thought is don't....Find something constructive to do! Never assume anything, lol.....You'll drive yourself nuts, like I'm doing right now, and well.......It just makes you sicker. LOL......Now do you see why I craft! :)

Quick update!

2009-06-20T09:43:00.002-04:00

...so I finally got up the nerve to call the doctor yesterday, and I ended up having to leave a message.....And you'd never guess who called me back~ Yup! My favorite nurse, Bah hahahaha!!! I just can't seem to get away from her. Now, mind you I called at 10ish yesterday morning, and got the call back at 5:09 last night! So, now I have to wait for Monday, and hope that the doctor gets my message!!! I'm really not trying to go up there and throw my ass around to get them to understand, I'M TIRED OF PLAYING THESE FREAKIN GAMES!!! I also cancelled Physical Therapy, and am waiting on the PT to call me back, so I can tell her what's going on. The appt. I canceled was my last appt with her for a while. Figured we take a break, so I could get this other stuff done......That's if I can get that Damn nurse to do her job!!!

My left leg keeps going numb, and I'm a little over it! Have to keep it elevated just to keep the numbness away! And I've got cramps!

And did I mention I'm Grumpy!!! Really really grumpy:)

OK...until next time!

And Today...

2009-06-16T20:21:00.003-04:00

I'm still pissed! And well.....that's all I really have to say about that! Still need to call the doctor, Just haven't calmed down enough to do so yet. I did see my 'head' doctor today, and was able to vent a little.....It was nice to have someone to talk to who knew what I was talking about! I am really going to miss having her around! I told her today, that I wasn't really ready to start over with someone else....and that I might wait a while, and see how it goes. I'd like to find someone with a medical background like she does. It's nice to have someone who understands what I'm talking about. She joked about how I was going to have a medical degree before this was all over with. And she agreed with me about this being as plain as the words on the page. This meaning the ovarian vein being the curprit for my leg problems.....among other things. OK......I gotta stop thinking about this or I drive myself mad!

Just Breathe Katie.......this too shall pass!

I am a Light and I want to Illuminate...

2009-06-16T09:25:00.003-04:00

I received the following award this morning from Sans at http://sansdollhousediaries.blogspot.com/
Thank-you Susan for taking the time to stop by and award this blog!

The rules of this award are:

1.-To complete the following phrase: I AM A LIGHT AND WANT TO ILLUMINATE...

2. - Link the blog from where the award came from and leave a message informing that person it has been received.

3.- Link and pass the award to five blogs that, in your opinion, are blogs of light.

So Here goes......
I AM A LIGHT AND I WANT TO ILLUMINATE.....
the way to a better quality of life!
Just because someone is sick, or disabled...
Doesn't mean that they have to stop living!
I want to help people learn how to take the time to stop and smell the Roses.
Even if it's only for a second, Stop and see the beauty around you,
Everyday!!
This is the only life we get.......
So make it Count!

I'd like to pass this blog onto 5 people that have given me a light to follow...
1. Casey from http://caseymini.blogspot.com/
Casey has been writing everyday for over a year now about miniatures. It's something I look forward to each and every day!! She has the best ideas, and is a wonderful teacher! Thank-you Casey for giving us so much eye-candy!

2. Minikat from http://minikatslittlethoughts.blogspot.com/
MiniKat has been so friendly and encouraging with this blog, and I am truly grateful for it!! I know how hard it is to leave a comment on here...People just don't know what to say, I guess...But Minikat always has something kind to say! Thanks for being my friend! Big Hug!!!

3. Mercedes over at http://libertybiberty.blogspot.com/
Mercedes is a Mom like me....and we often share emails about minis and family! LOL...Mercedes and Liberty have become household names over here, lol! Thanks for making time for my family Mercedes!

4. Ana from http://miniaturesforever.blogspot.com/, although these days you can find her here: http://foreverbags.blogspot.com/
Ana was one of the first people I ever talked to in Blogland, and we've become great friends! She makes some beautiful miniature furniture, and is now making personalized bags! Thank-you Ana for all the 'miniature' encouragement you've given me, and especially for my book!!! :)

5. Chris from http://candidcanine.blogspot.com/
Oh where would I be without Chris! She's one of the biggest reasons I got into Minis! And stayed with minis...and she's to blame for me having more then one house, hehehe.....she really got my brain seeing minis!!! LOL! Oh...and she encouraged me to write! So Thank-you Chris!! I know we don't talk much these days....but You know I think of you and your family All the time!!!

It's always so hard to just pick 5! There's so many of you that keep me going, so many that inspire me to keep 'crafting'!! I truly feel blessed to have found the mini world here in Blogland!! Thanks!!! :)

Katie :)

Lord, Grant me the ability to keep my Mouth shut!!

2009-06-15T16:04:00.006-04:00

So....I'm back.....and I'm pissed! I went to my cystoscopy today, to only find out that the freaking nurse never scheduled the appointment! She called and left me a message as to when it was...and she sent me a letter in the mail.....but never wrote it down on their end! Ask me if I was breathing fire! And Yes this is the same nurse I was having problems with a few months ago! I am so annoyed!! But I kept my cool, Yes I did! My son would of been proud! LOL!! So she had to reschedule it, and when she gave me a time and date...I said are You sure?? Am I really going to have an appointment for that day?? I also asked if I could have a copy of my CT that was done 2 months ago......and when she asked me where I had it done, I politely reminded her it was at the ER...remember that experience?? If I didn't know better, I'd say this nurse has it out for me?? I don't need this stress.....Really I don't. I was so nervous about today....and now I have to wait 3 more weeks! What the F*C*???

And my Ct report just makes me more nervous! It says I have a "Prominent left ovarian vein and multiple prominent pelvic vessels." It also says "this finding has been associated in the past with pelvic congestion syndrome." So......what does that mean. LOL...Ok, here's me playing doctor....we'll have to wait and see how close I am to the truth. After doing some research online, I have learned that I have 'varicose veins' in my abdomen that are causing blood flow problems. Now, call me retarded, but wouldn't this explain why I lose circulation in my legs when I sit or stand??? And going back through my records, I see that this has been something that has been brought up before, but was never discussed with me. I don't even know how I missed it, I normally go through my records with a fine toothed comb, because I know that drs are busy, and that things are missed. But, for real...is this not like a duh moment or what??? Maybe it's just me, and I'm feeling loud mouthed and angry, but Hello. I can't do this all by myself!! I feel like I keep running into the same brick wall over and over again!! Somebody please stop me!!

So...I probably need to call the doctor tomorrow and ask what this means. I have read several articles about this online this afternoon, and none of it sounds like a walk in the park. Hopefully I'm reading way beyond what I should, and there's a quick fix, but I just have that feeling that it's just not that easy! Nothing ever is around here! Damn it!

LOL....I'm off to go find something to kick!!! &%^$^&%&^ NURSE!!!!

A quick update:

2009-06-12T10:01:00.003-04:00

I'm still here....waiting for my car! It's been in the shop for a couple of days now, at first they thought she just needed a tune-up, and then she also needed new tires to pass inspection. So they kept her over night, and took her to get new front tires yesterday morning. They said on the way back to the shop, she started shaking, so when I talked to the mechanics last they were going to take the computer apart and see if anything else was wet. Still haven't heard from them yet this morning....Hopefully she's fine, and was just having a 'moment' yesterday! I'd really like to have my car this weekend!!

So.....the heart monitor is already getting on my nerves. I don't sleep in one place at night and wake up all tangled up in the cords, lol. I also sweat a lot, and that makes the sticky tabs melt and side. I haven't felt a PVC since it was put on Tuesday afternoon, but I did just call in my first recording. And it was soooo long, lol. I haven't pushed the button once, and don't plan on pushing it till I feel a PVC. My guess is that I will get them next week when I start my 'cycle'.

Actually, Yesterday was a good day! First good day in a long time. No headaches, no dizziness, no breast pain. And I even got a nap in!!! Woke up wet, but that's ok....I can deal with that! Actually I can deal with most of the crap~ it's dealing with it all together that gets Old!!!

OK....So I stopped taking the Fludrocortisone (Florinef) about a week ago, and my stomach is starting to balance itself back it. Sometimes I just can't take certain things, and I guess that's one of them????

And I did go back to the slow release Toprol (Metoprolol SUCC XL 50mg). And it makes me realize that this is not something that I want to be on for the rest of my life. It makes me tired all day, and were not talking about a little tired, were talking about feeling like I haven't slept in days....Sloth Like~ And I can't be like that. I have kids.....preteens to be precise, and I need to be able to keep up with them. Well, I need to be able to at least try and keep up with them. I don't want to feel like I'm glued to the couch!

OK...this is going to be quick today, Just wanted to jot down a few things...... Hope ya'll have a great weekend!!! Talk to you later! Katie :)

Me and My Grumpy self is back....

2009-06-09T12:06:00.001-04:00

(*I posted this in the wrong blog this morning...sorry to have confused ya! LOL)

What a crazy night last night. I was asleep by 6......and woke up at 2 am throwing up what I had eaten for lunch! Yes! Gross! But this is what it is, hahaha....so you get to hear it! I don't think my stomach had processed anything I ate yesterday! Was back asleep soon after, and up at 6 this morning. Forgot to take my medicine last night, so I'm all jittery this morning....But I'm Not sleepy anymore, lol!!!!

Got a rental car yesterday, but my car is still sitting out front.....trying to give her another day to dry out, and hope we can get her running long enough to get her to the shop...time will tell.

Wouldn't of needed a rental if today wasn't going to be a crazy day! LOL, When scheduling everything, I planned all my appointments for the same day, so I could have the rest of the week off....and well......today is that day. First, is Drew's allergy shots in downtown Norfolk, then I have to bring him back out here to go to school..... Then head back out to Norfolk for Physical Therapy. At 1 I have to be in Chesapeake to get my heart monitor....and back out this way around 4 to take the bf to get some more dental work done. I'm tired just thinking about it. Oh, and if have time, I really need to go to the grocery store and the pet store. Fun, huh? But at least I'll have the rest of the week to lay around.....maybe. lol

Rain, Rain, Go Away!! And Don't come back another day!

2009-06-08T07:45:00.005-04:00

I kinda feel like the frog in this picture! Looks like he's peeking out after a good rain storm to see if the sun is coming out yet?!

I'm starting to wish I hadn't thrown away my other pills. I switched heart meds again last week, and the new stuff is kicking my butt~ which means it's doing it's job. But I hate feeling like this. All I want to do is lie around and veg! And I don't have time for that kind of crap....not with 3 kids and a broke down car! I need to be super woman right now, so I can get a handle on my 'real life' and get everything back to normal.

Breast cyst and the night sweats have been annoying all weekend!! Had one heck of a headache last night, that still seems to be lingering around this morning. Bowels are moving fine, Bladder has been on fire. Having to take hot baths at night to numb out the burning feeling. And I'm stressed! And cranky.....and all I want to do is go back to bed......but No!

First I gotta get a tow truck to come get my car, and then it's off to find a rental car so I can go to some really important dr. appts this week. Damn! I wish I had a friend like me that would let you borrow their car when you need to. Not that I ever need too, but for real, every once in a while I need help, and I just don't even bother to ask for it, cause it's just too much of a problem. My Momma raised me to know that You just have to do it, that no one else is going to come along and do it for you.....so just do it. Funny, everything My Mother ever said to me as a child, is true, lol. Thanks Mom! LOL.... OK, let me say this.....I know the bff will do anything to help me, but he does have his own life too......Yes, the bff and the bf are both Men! The bff has been one of my closest friends for over 7, 8 years now......And lived next door for most of that time. His room mate was another one of my best friends (We'll call him bff#2, lol), who had actually rented from me for years before he moved in next door. I miss those days! It was nice having someone right next door to talk to. Both of them knew me back when I was working 10 hours a day......and both of them watched me slowly fade away. I remember a time when I was sitting at the kitchen table (sitting because i was too tired to stand up), anyways I was making PB&Js for everyone, and feel asleep right on the bread! Bff #2 was living here and came in, laughed at me, and told me to go to bed!! ...I don't give up easily!! LOL.... I also remember a time when I was really doped up on pain meds, and laying in the middle of my living room floor, with all three kids talking to me at the same time ( I think they were about 4,5, and 6). My room mates were here, laughing at me trying to listen to all of them.....I don't remember a thing the kids said to me that night, I just remember all of them being 2 inches away from my face, and they were talking up a storm!! It was cute now that I look back at it. They do tend to grow up quick don't they!! They all still try and talk to me at the same time, too! But I'm getting better at listening to 3 conversations now, lol.

And now I'm rambling! LOL......Ok, guess it's time to get my butt in gear and do this!

Random thoughts on any average day...

2009-06-04T18:45:00.002-04:00

Do you ever turn the music up so you don't have to listen to the thoughts in your own head. I really do love music. It brings back so many memories. Different songs will stick in my head to remind me of the 'good' and the 'bad' times. Every time I hear Nothing Else Matters By Metallica I think of when I was a teenager and how I used to sleep with my windows open and fall asleep at night to the sound of my neighbor's son playing his guitar.....Still to this day... I don't think he ever knew I was listening...Thank-you Jeremy for putting me to sleep every night! The song Wind Beneath my Wings by Bette Milder reminds me of when I was in the Fourth grade and I looked up and saw my Mom in the door of my classroom, with a look I had never scene before. There had been an explosion on the ship my Dad was on, the USS Iowa, and at the time, all she knew was that there had been a really bad accident.... My dad was OK, but he really went through a rough time with all that surrounded that time frame in our life. That song was dedicated to the battleship when it came home! And every time I hear the song now I think of him. BTW...I miss my Dad...he's close, we just don't talk these days. Family drama......but I do miss him, Or at least the person I used to know.

...wouldn't it be nice if they played Lynyrd Skynard... some Free Bird or Simple Man; or even some Bob Marley!! in Pre Op... Something that would relax someone and put them in another dimension.....LMAO~ Did I ever tell you that when my kids were born, I was sitting on a beach somewhere drinking a fruity big girl drink....in my mind, lol....Mind over matter!!!

So......My new meds are really slowing me down, which means they're working, I just don't like feeling like a sloth all day. Other than going to the post office, I haven't done a darn thing today!

I did watch a really good Movie earlier today called New in Town. Really funny movie! Had me crying I was laughing so hard. And the moral of the story was really what I needed right now. It's about never giving up, and just when you think things are over, sometimes you have to try something different......What's the worst that could happen! LOL...I know it sounds awful if you follow what I'm talking about......but for real for real, I feel like I've already hit rock bottom, and that it's all up hill from here. I hope. I just have to take a chance.

Oh, and a bit of humor......When I was at the Post Office earlier, I had a young gentlemen come up to me and give me his business card. He said he was a personal trainer, and then said "Not that you need it".....and I had to laugh! I have been trying for a few years now to get my ass back, thank-you! 2 years ago, my cheeks looked hollow and I was in a size 4...I've never been in a four! I was at least a 12 in high school.....But I have worked hard at eating and I'm back into a size 9!! And for someone who's really not crazy about food, this has been hard. There's such a long list of the foods that I am suppose to avoid, that it takes all the fun out of eating. It more or less is a chore. At one point, I couldn't even digest food, and was reduced to drinking Ensures. LOL, Yuck, That stuff tasted like chocolate chalk! But I drank it!! My point is, I appreciate this strangers suggestion.......but I think I got it from here. Don't worry, If I decide to go through the surgeries, I will lose it all again, but for now I really need that butt to be there to lie on the OR table!

Ok...its time for an Update:
*Breast cyst is starting to shrink....Wasn't too wet when I woke up this morning.
*And other than being really groggy and sloth like, I've a decent, unproductive day of sitting on the couch! LOL

Pretty good day if you ask me:)
Until Next time:)

To do or Not to do....

2009-06-01T12:05:00.004-04:00

Well........ Life is getting exciting again, and I really don't know if I want to go along for the ride.

So, I spoke with my heart doc this morning. And had the same conversation I had with him the last time. You see...I have SVT, which means my heart is going to fast, and they want to do an ablation to slow it down. However, with this type of surgery, there is no guarantee that it will work. Well, it seems to work for a little while, but then the patients have to come back and have another, and eventually end up with a pacemaker. However!! The patients that end up with pace makers have a much better quality of life then before. Yes, I have done my homework about all of this, and I Really do trust the surgeon with my life. He's not telling me what to do, just suggesting a way to take a chance at a better life.

I have had 3 ablations before, for another problem......and I'm not too excited about going back to the Cath Lab for more. But, I'm tired.....and I want more out of life......so decisions have to be made. And the good news about this surgery is they only have to use 2 catheters, instead of 4 like they normally use! LOL, I'm trying to find the bright side of things here, can't you tell.....LMAO!!!

I also spoke with him about the PVC's coming back....and told him that they weren't really bad enough to complain about yet, but that I know how this story goes. I asked him if they could do both ablations at the same time...and he explained to me why they really couldn't. For one ablation, they'll put me totally under, and the other one has to be done awake~ Or in my case, sedated. I can't do them awake, it hurts too much!!! LOL...Oh well, I was trying to 'kill two birds with one stone' here..... He's curious to see where the new PVC's could be coming from, so I'll get another 21 day event monitor in a couple of weeks, and hopefully we can catch them. I used to get them so bad, I only had to wear the monitor for 24 hours and would have 30 pages of BS!! LOL....So, I'd say I'm moving up in the world!! Woooooo-Who! In the back of my mind, I was already prepared for them to come back....I'm a realist! And I've learned to expect the worst, and pray for the best!

I've managed to put this stuff off for over a year now, It's time to stop 'playing' and get on with it. Part of me was just hoping it 'would go away' and the other part of me just wanted to enjoy a year without being cut open!! Dang it!!! Now I get to think about making one of the biggest decisions of my life. Man, am I overwhelmed!!! Between my bladder, my boob and my heart, I swear.....

OK...I'm off to go watch a 'happy' movie and pretend for another hour or so that life is normal.
:)

*And I won't talk about that fact that my breast is hurting today from this stupid cyst!! can't a girl get a break??? Hahaha

Update

2009-05-31T08:34:00.003-04:00

I forgot to mention that the urologist called Friday and moved my appointment up a couple of weeks. Didn't say why, so I'll just lead myself to believe that his schedule changed or something...and not the fact that's he's probably just now looking at the CT report, and wants to see me sooner?! Why can't they just tell you these things over the phone?? It would save me so much stress!!!

My dizziness is kicking my butt here lately!!! I felt like I was going to fall out of the chair the other day, and the chair wasn't even moving!! Very strange feeling!!! Felt PVC's last night for a few minutes.

And my Breast hurts. It's not as swollen as it normally gets, and I woke up semi dry this morning......maybe I'm mid cycle or some thing?? LOL.....Haven't had a period in 5 plus years, but I still have an ovary. So my body goes through all those fun things that every other woman goes through, I just don't have that 'friendly' reminder to give me a heads up. I'm left to guess. Besides the area of my breast that they operated on, I have 2 other questionable bumps. Ugg....I'm in no hurry to rush off to the doctor office for any more Mammograms.....Plus, by the time they make these appts., I'm normally in between cycles?! If I could just wake and go "Oh, it's here today, Let me call the doctor" and then actually go see the doctor that same day, Life would be so much easier!

Oh......and I did manage to squeeze in an 8 hour nap yesterday.... Must of been more tired than I thought!!

blah..blah...blah!

2009-05-28T21:39:00.004-04:00

Yes! I know....I really need to get in here more than I do, but I find it so hard to whine and complain everyday about what is. I can't change it, but it does help sometimes to just be able to talk about it! I got a really encouraging letter the other day from a lady who thanked me for sharing my story. It really made me feel good to know that this blog may help someone else. I wish I had more of a support system then I did when I first starting going through all this crap. Some days I'd like to think that I'm on the tail end of this ride, and that it has to be all up hill from here. So if I can help someone else that is just starting out with any kind of chronic illness, I will.

A long time ago I went to college to get a degree in Psychology, and I wanted to do Art therapy. I had to withdrawal from school when I first got sick, which still bothers me.....but I just couldn't do it all! But, now that I'm starting to get some where with myself....I still think about going back to school to do this. I want to be able to help people express what they can not say.....I want to teach 'crafts' to people that can't get out of bed. I've been there, and I know how Boring it is.....If I wasn't an 'artist' I do believe that I would of already lost my mind by now!!! There's only so much TV a person can watch in a day!

I remember one of the times my daughter was in ICU, and the activity people brought us paper and paint! I started 'borrowing' things from the nurses stash, and Cora and I had a blast! We used cotton balls, q-tips, gauze......our fingers......She was maybe 4 or so.....it was one of her first ICU visits.....I was so proud of her for staying strong that I framed the picture we painted. I wanted her to remember the good times, in the hospital, not the bad....And I wanted her to know how proud I was for dealing with all that happens. For those of you that don't know, Cora is my daughter, and she has asthma~ and I think she's got my dysfunctional system. It scares the hell out of me!! I don't want her to have to go through what I have gone through. It really sucks watching your baby in ICU year after year......but we're starting to get the hang of it. We are getting so good at it, she hasn't had to stay in the hospital for over a year now!! Last summer she came close, but we were out of town~ lol...all the way across the country in Ca., and I begged the ER doctor to give her the right meds, and release her. No way was I missing our flight home! Although we have gotten smart over the years, and now buy insurance with our tickets....cause you never know who will get sick with us. And btw, last year was the first time I had flown in over 10 years...I don't do very well in the air. I'll just put it this way, when we flew to Ca. I went through my barf bag, my daughter's barf bag....and then used both of those boys bags, before the flight attendant brought me a trash bag! LMAO!!! I thought that was so funny, how embarrassing to be offered a BIG trash bag, cause you keep filling up the little doggie bags too fast!! I walked off the plane with vomit all down the front of me...and could of cared less. LOL...When we got to the terminal we were suppose to be at, the kids sat in the chairs and played their Gameboys, while I curled up under them, and waited for the airport to stop spinning.......My poor kids!!! I am so embarrassing sometimes!!!

OK...back to what I was saying....What was I saying??? LOL...I forgot.....Oh...I was talking about school and art therapy. Maybe one day my heart will behave enough for me to trust myself to go to school again. Some days I can barely remember where I put the car keys, and anytime I need to figure something out, I have to sit down and read the directions, a few times, before I try and fix it, then I'll end up breaking it, to spend another week or so wondering where I went wrong. Algebra...forget it, I didn't even understood it before the 17 surgeries.....and Well, I'll just say the kids are lucky I can remember their names some days! LOL.....However, it you need percents of prices or want me to count backwards by 7s starting with like 96 or something, Then Yes....I can do it so quick I may even impress you....Isn't it crazy how that works??? Ok....Have I babbled on long enough, LOL?!!

So...want an update? :)
*We're dropping a day of PT because my numbers are looking really good:) I really, really believe in Physical Therapy~ it does pay off to do it!!!

*No news about the CT yet, But....like I said before, No news is good news:)

*Haven't had the night sweats since the last time I posted! :) Haven't had a migraine this week:)

*Heart, dizziness and PVC are bothersome. Some days its worse. Showers still get me, so does talking a lot. (Heart rate goes into the 140s-160s when showering) I do fine with the dizziness as long as I'm sitting still. But trying to shop kills me! You know how when your in the grocery store and trying to find something on the shelf....and you're scanning the aisle trying to find what your looking for....It's even worse at the craft store when your trying to look through the bead aisle or something~ lol.....Impossible!! Makes me drunk! Normally when I go in somewhere, I go to where I need to be, get what I gotta get, and get out of there. LOL......When we go to Wallmart, I just walk real slow and try not to look at everything. The on and off ramp on the interstate is like a roller coaster ride for me, lol. Bending over is no good either! I have been tested for vertigo, and No...that's not it, it's just a blood pressure thing. This is what keeps me from getting a job! Well, that and my legs and my bladder...and the migraines, and the IBS, and the depression and my Big mouth....hahaha!

*Appetite hasn't been great, but Bowels have been really painful! Felt like my insides were falling out yesterday~ took a Valium after waiting for it to go away for a few hours, and the Valium seemed to take the edge off. So did going to bed early! Bladder doing good as long as I don't eat Italian food......and I love Italian food!!! Pizza and Spaghetti! Yum!

*My legs have been really bothering me.....I get white spots on my legs when I sit or stand still. I have no idea why and neither do the 10 doctors I've been to see about it.....One day I need to do a post about that.........Just wondering if any one else has seen this, and what the H E double hockey sticks it is?? Sorry.....getting to where I can almost type as fast as I think, so there's no telling what I might say...

Let's see..........anything else??? Nope......lol......well nothing I can think of, lol!

Oh...I do see the heart doc on Monday. Starting to write my list now. I do recommend this. Write down questions you may have for your doctor before you go. If you're like me, you'll get in there and forget everything you wanted to talk about. Or the doctor will be in a rush and you'll forget to ask. And don't give the list to the doctor! LOL....Then you'll both forget. Instead...when the doctor ask if there's anything else, Say Yes....and pull out your list. Or you can just put it on the bed next to you so the doctor at least sees you have it~ LOL, gives them a warning that they may have to spend the whole 15 minutes you get actually talking to you. This is your life, and we are paying them for the expertise in the field they know best. Remember they are only human too....and are just trying to do they're job, although sometimes it may not seem like it.

And with that said....I'm getting off here, and going to lie down on the couch and watch the end of Grease!!!

Talk to you soon!!

update...

2009-05-16T19:40:00.002-04:00

Just wanted to make a mental note that I woke up twice last night just to change my pjs! This whole night sweating stuff sucks!!

The Butterfly Award!!

2009-05-16T19:33:00.004-04:00

I couldn't believe it today when I signed in and saw that this little blog full of nothing but me rambling had got an award!

Minikat from awarded The Butterfly Award

to me, and I couldn't be more grateful! This is what she said

'Katie's clay adventures already has been awarded... so I'm going to go with the blog that makes me get up and keep moving on days when I don't want to. Lemonade anyone? http://makingthebestlemonade.blogspot.com/'

Thank-you for letting me know that all this 'babbling' I'm doing is inspiring someone else to get up and go. We only get one time to life this life, and even if I'm 'sick', I still want to be able to live! So, here's to the rest of our life being all it can be, one day at a time!!!

I must move on.....

2009-05-16T18:17:00.003-04:00

Well.....Friday my head doc told me she will be retiring in July. Actually, she told me a few months ago that she was thinking about it, so I kinda new it was coming. However, I have mixed emotions about the whole thing. I started seeing her in June of 2005, two months after I had my hysterectomy. I was told by a few medical doctors that I needed psych eval. because I kept complaining that something was wrong. LOL...isn't that how it always happens. Anyways, I went to see the psych, and it was the psych that pushed me to keep looking until I found anwsers. It was that one voice in the background that kept saying what if..... *And in August of 2005 my insides literally came out~ long story, don't feel like getting into that right now......but an abscess had grown in place of where my uterus used to be and had attached itself to my bowels, and the whole thing decide it wanted to come out. Not a fun experience, and in fact I can't even say how I really feel about it because I might get arrested for idol threats. So, with that said....it has been my therapist that has kept my head on for the past couple of years. It was nice that she was with me to see what I went through at that point in my life. For 4 months I did everything but throw myself on the floor and scream to try and get them to understand that something wasn't right.....actually, if you ask a few of them, they'll tell you I did scream and yell, I just didn't throw myself on the ground. It was the therapist that has been the one to tell me that I'm not crazy, and you know what...sometimes you need to hear that from someone! She's been here to listen to me talk about the 3 heart surgeries, and the whole breast issue, which btw...she got on me about getting it looked at again! But for real, for Real.......I just don't want to start over with anyone else. She already knows everything...She knows I really am crazy :) But not the kind of crazy that those stupid other doctors convinced me I was. yup~ I was really starting to lose my mind there before the sky feel out. And after the surgery of them putting my insides back together, I was pissed! Still feel very angry about the whole thing. I just can't seem to let go of some of the things that were said by certain doctors. But I can vent to her, and she knows I'm just venting, that it is what it is, and I'm going to get up tomorrow and try this again. She knows I'm in it for the long run, I can't give up~ I'm a Momma. What would my kids think of me! They've seen me over come so much! My 2 oldest both have health issues too and have needed this strength to get through the rough times.. I can't give up~ or they'd give up. I don't care if it kills me, I will be there for those kids.

A long time ago....I was on bed rest and stuck on the couch for a month.......I was crying one afternoon because I couldn't go out side and 'play' with the kids like I used to.....And my son came in and said the magic words. "It's ok Mom.....you might not be able to come outside, but we always know where you are, and you're always here when we need you!!".....Makes me cry just thinking about it. I had never looked at it like that and it made me think of things in a different way! He was right....I might not be able to run around the yard and act like a fool with them, but I could just sit and be there for them. I can honestly thank my kids for me still being here. It's the whole reason I try and keep my head up.

Anyways, lol.....getting back to the point of this post....Do I want to start over, or do I want to try this on my own for awhile......time will tell.

LOL...On the brighter side of things.....My doc is ready to retire so she can craft!! LOL.....can you see why we get along so well!! I don't blame her...she's been working for over 40 years and she's ready to take some time for herself. I wish her all the luck in the world and hopefully we'll run into each other some where down the road at a crft show or something. Life has a funny way of coming back around to you!

...update...

2009-05-15T10:58:00.003-04:00

Haven't heard anything back on the Ct yet, so I'm thinking that it was 'normal'......

Physical therapy is going good. I go twice a week, an hour a session. Still trying to teach those abdominal muscles to relax... along with all the other things that go hay-wire! This week it was a butt muscle that I didn't even know I had...hahaha, until the pt started messing with it. The theory is that when a muscle is spasming out....you can drive your finger into it's pressure point and it will 'chill out'. I see it working, but, Boy~ it sure does hurt when they're fighting to get it to chill, LOL!!! (I really need to add one of those things at the bottom of my page that says this is my Opinion, not medical expertise!)

I see my 'head' doc today. I was really down at my last visit, just at one of those points where I was frustrated with life! Today, I'm in a much better mood. :) This week has been decent...nice and quiet~ no drama, and I even got my walk in~ Although I complained the whole time about how freaking heavy my legs felt! Got the grocery shopping done- and I was done, LOL.....didn't even let the bff take me out to lunch :(

Breast cyst is still here.....causes chest pain that is not enjoyable. Also have several other questionable bumps, but I'm not going to pay any mind to those yet, hopefully it's all in my head or something!

Heart is still in full speed ahead, and PVC's have been acting up. They're still no where were they once were, but I know how this story goes.....so we'll have to wait and see how it ends.

Finally got bowels to slow down, but then they decided to stop....working on getting those running again....HAHAHA~ You really needed to know that didn't you! :)

Oh....and I finally cleaned the bathroom yesterday!! Woo-who! You don't realize how much energy it takes to scrub a bathroom until you have None!! Still need to tackle the laundry that is starting to build up, but I think I used all the energy I had yesterday in that darn bathroom, so the laundry may have to wait another day...I'm off to get cleaned up for my dr. appt.

.....Which brings me to one more thing......Showers. They wear me out! Seriously! I don't know if it's that standing up part, or the using my arms above my head part.....but when I'm done, I'm breathless and wiped out. I normally have to lie down just to catch my breath! Ridiculous!

OK....until next time

A Movie Suggestion...

2009-05-14T15:55:00.003-04:00

So....I thought I'd share something funny with you. Recently I watched the movie Ghost Town

and Oh My!! is it funny. If you've ever gotten the run around from a doctor, had a colonscopy or even been to the doctors and had to answer a thousand unimportant questions.......then you should watch this movie! It's totally worth it!

Update...

2009-05-11T07:53:00.003-04:00

Woke up early this morning to change my shirt......I was so wet from the night sweats....I had caught a chill. Actually, come to think of it, I do believe I woke up Sat. and Sun. morning wet, too.....Just not as bad as today. My breast 'cyst?' is swollen......I'd almost swear this thing is spreading into the left side of my breast...The 'cyst' sits directly on top. Last April, I had surgery to have it removed, but instead they found a tumor, thought it was the 'cyst' and removed it. *The tumor was benign!! But I still have the lump. Most annoying!

I've been really tired....Could have something to do with that busy week I had last week. PVC's have been acting up, but not enough for me to complain about yet. Still having speed issues with it, makes me out of breath. Stomach started to get stupid yesterday morning~ so I took a Levsin, and all was well.

Not much else is new......or exciting. Just hung around the house this weekend......and took it easy. I so wish I had the drive and the energy to really scrub these floors.......It wears me out just thinking about it, lol. At least I'm thinking about it right?! Hahahaha....

2009-05-07T18:46:00.002-04:00

I just found this link to another blogger who has dysautonomia...and there's some really great videos explaining things in a way one can understand....

http://wheredidigetthislemon.blogspot.com/2008/12/informative-pots-video.html

Check it out when you get a chance...

Ok...So I just got done reading Lauren's whole blog and all I gotta say Is Well Said! She takes the words right out of my mouth! Seriously....go check it out!

CT Went well...

2009-05-07T10:44:00.003-04:00

But like I said to my bff yesterday.....Why does something so simple, always have to be so hard with me???? OK...So we got to the Imaging center at 10:30....checked in, and had a seat. Rachael Ray was on.....Then the nurse came to get me and told me that they were extremely backed up at the moment (The ER uses this center for it's ER patients) and that she wanted to get my iv line going that way when it came time to get the CT done...we could just get er' dun! She realized right away that my veins were hiding, and I informed her that they had a mind of their own, and some days they worked, and some days they didn't. She went and grabbed a baby needle...and started on the left arm....and well, that vein didn't hold up. So she left for a minute and came back with 5 more needles. LOL...This is where a normal person would run for the doors... LOL, but I knew she was just grabbing a handful so she didn't have to keep walking back there. Next she tried my right arm, and after fishing around in there for a minute, she got one. Once she got it in, she sent me back out into the waiting room. I had to laugh when I came back out and the bff started to get up...I told him that we weren't going anywhere...and showed him the lovely thing now hanging out of my arm. So we sat and watched the View....and then the news.......And then the lady came back out to get me. She apologized for the wait, and I told her I understood. (In case you're not catching on to my time references-the tv shows, I didn't get to the back until after 12:30ish)

When we got into the CT room, I asked her if I needed to remove my bra, because of the under wire.......And as she was turning back around she said, "Yeah, Do you want me to get you a gown?" Hahaha.....but I already had my bra in my hand....And she laughed and asked me what I did for a living....LOL< I have had so many CT done, I know the drill....so I wore a strapless bra so I could easily take it off and still keep my tank top on. It was funny...wonder if she thought I was a stripper or something, Now that's hilarious! So...on to the CT................That part was normal....Lie on the bed, they take a couple of pictures...they feed the contrast through the IV, take a few more pictures......and then a few more....and then your done. After the dose of contrast...I got cold.....really really cold. That's another lovely side effect of the dysautonomia....my internal thermostat is broken. And when I get cold, my body shakes and my teeth chatter. I explained to the nurse that this was normal for me, and that as soon as I got outside I would be fine. As I was leaving she told me Next time, She'd let me do my own CT, LOL!!

Of course the bff was laughing at me when I came out, cause I was almost running for the door. He knows the drill! After, we came back by the house so I could Pee for the fourth time....I went to rest room 3 times while we were there~ All that stupid water they made me drink before hand.....added to having to actually sit in a chair! Not fun!!!

After we went to lunch.

When the nurse asked me what I did for a living, I told her I was disabled. And she said what no one ever says, but I can tell they're thinking it, "You don't look disabled". And I said thanks. She also made a comment about how pleasant I was about all of it. This made me giggle. A couple of years ago, I wasn't very pleasant. In fact, I was down right Mad at the world! And I was in pain, and getting the run around about it. Now, I have some amazing Doctors.....and we are all on the same page! For those of you out there that are 'sick', Hang in there: Don't give up! You just have to find a doctor that will listen to you. Now that I actually have answers to my questions, I am much more at peace with myself. Plus, because of my heart, I try to keep my cool.... I don't argue like I used to, I just don't have that kind of energy.

Unless I'm at a fast food place....I went to Mc Donald's last night to pick up dinner, and decided to go inside instead of the drive through because I had a big order. Anyways....the girl was moving really slow, which really annoys me, Hello: It's suppose to be fast food. And when she was packing my order...She asked if I wanted her to put them in separate bags or one big bag....And I simple said "You can put the Happy Meal meals into Happy meal bags and Put the 2 combos in the same bag." I mean come on....Do I really need to explain to this girl how to pack our order??? The guys behind me were laughing because I said it sooooooo slooooow. LOL, So times you just have to break it down for people! Duh! Come on People, Let's get it together.

LOL...My oldest the other night made a comment about starting a blog about how embarrassing it is to go out in public with me. Hahahaha! That was after being in line at the drive-thru and me pointing out the customer in the store that had left his car running in the parking lot with his radio on. It was so loud, they couldn't hear anyone on the drive through speaker box talking.
When that guy came out of the store, I was still fussin, and my son was ducking down in his seat, worried "I was going to get him shot"!! LOL, I told him I wasn't scared of that 'kid' and that he probably couldn't even hear the words coming out of my mouth because his dang music was so loud! LOL......

Oh...crap...look at the time....I have to be at Physical Therapy in 30 minutes and I'm not even showered yet! ok....TTYL

Me

Uh............ Duh!!!

2009-05-06T08:53:00.003-04:00

So, after I got up this morning, I went in the kitchen........made my usual glass of Carnation Instant Breakfast and sat down to read my email. I took one giant gulp.....and then remembered: I can't eat anything! What in the world was I thinking, lol..........I can't have anything for 4 hours before the CT, and I also have to drink a BIG glass of water 30 minutes before. So while taking my kid to the bus stop....it's raining cats and dogs here......I stopped in 7-11 and -well, I made the kid run in cause I'm still in my jammys....Anyways.....I've got my bottle of water, letting it warm up now. Can't drink it cold or I'll get sick (My IBS will kick in). *LOL~ I'm the girl that goes into a restaurant and orders a room temperature glass of water.....haha, and you should see the looks I get, Bah hahaha......Now we just go to the same restaurant all the time, request the same waitress and she knows....lol....actually she knows my whole order, Right down to 'hold the caramel, and don't forget the butter'.....hehehe....

OK, I'm off to shower and then out the door I go......

Weekly Update

2009-05-05T20:40:00.004-04:00

I'm still here....I just have a hard time writing everyday about how I feel like crap. I want to be able to share the highlights of this adventure......and keep you interested enough to come back for more. So with that said.....

I started Physical Therapy again today. Actually, I was there last Thursday to get re-evaluated. But today........we actually 'worked'. So let me tell you a little bit about the kind of PT that I go to. It's for my bladder: For the Interstitial Cystitis (IC) , and I'll just say they get very personal with me. I have muscle spasms most of the time, and the PT finds them and then drives her fingers into it to get the muscle to relax. Some days it doesn't bother me....and then some days I walk out of the office looking like I just got off a horse. LOL.......I tell ya, the things I go through to have a normal life, is anything but normal. There's even a 'probe' that goes inside of my Vagina to record the muscle spasms......When I started this years ago, I was at an 8/9.........And last week I registered at a 5/6.....I have learned over time how to get it down to under a one...but I have to lie perfectly still and I can't talk. LOL, talking makes my numbers jump through the roof every time.

The PTs also work on my abdomen.....and it does help. I notice that when I'm in PT, my bowels are more regular. *Sometimes they (my bowels) forget to work, and I have to 'jump' start them. If your ever constipated......rub you tummy in small clock wise circles, and I promise, it helps.......
So does a bowl of Raisin Bran!

They've also done a lot of work on my back. I slid into home base on a concrete court when I was 7ish and it somehow curved my tailbone up. Yes, I actually have a nub back there. Now that I'm starting to gain back some of that weight I lost, it's not so bad.......But, dang! When I was really skinny, I used to get bed sores on it....And I can't have any kind of surgery with being on a doughnut on the OR table (Unless my feet are in stirrups...somehow doing this makes my tailbone flatten out better). That was something I learned the hard way...I think it's when they move me from the OR table to the bed, they put me down butt first. And it messes with those nerves. It was so bad one time, I had to go get Cortisone shots into my tailbone. That hurt like a son of a bitch!!! But after a couple of days, it was All better! I'll never go thought that again.....I hope. Now I come prepared, with my trusty blue doughnut that always seems to deflate before surgery is over. And actually, when I had my breast surgery, they lined the OR table with that egg crate stuff, and that worked!!!! LOL...I really shouldn't know this kinda stuff, but I do....Maybe one day I can write a book on becoming a better patient. The things you need to know.....lol...... Oh and it would definitely have a chapter on tests and what they really feel like. I swear sometimes the science of medicine is so Barbaric!!! Just the other day....I was talking to someone about how they are now trying Botox injections into the pelvic floor to control muscle spasms......Good Lord.....Not me! Now way, no how!! I am curious to see if it helps this patient though......Medicine can be an interesting topic, huh......

Oh, and at the Heart Center, they have this thing I think they call the 'slip and slide'.....It's this big Yellow sheet of plastic that they slide under you, so they can slide you from bed to bed. I think because of the catheters, they can't bend your legs. LOL....that's the worse part of the ablations....Taking these freaking catheters out! Now that's painful!

So, back to PT.......Today, it got me.....lol......When I left, I was very sore.....my hips/hip flexor area were bugging me the most! Have that 'horse' syndrome again, haha! Took a Valium and things have finally started to quiet back down. Stupid hips! You're not suppose to ache this bad at 30!

I finally got over the migraine spell from last week, and now my body just wants to sleep. Still dizzy, coming off the off ramp tonight had me feeling drunk! Breast cyst? isn't swollen at the moment, but I've been having horrible chest pains, and it radiates down my left arm, almost numbing it. Not sure where that's coming from, but I figure I haven't falling over dead yet, So I'm good. LOL. Bladder is nice and tingly.....and my left-back side is swore~ Muscle pulled or kidney....take your pick?! Did have a mild headache today, but a 2 hour nap took the edge off. Doing good about remember to take my morning meds! Can't tell if they're working yet or not. PVC's not too bad.......But my heart speed is up. I think it was yesterday?- But my heart felt like it was trying to kick start itself~ felt like I had Thumper in my chest....not to sure what that was, but OK.

Hey, at this point, I'm just along for the ride.....haha.

Have a CT in the morning~ My blood count in my urine was kinda high the last time I saw the urologist...So we're just doing a routine check up. I haven't had a normal CT in years....lol.....Nothing ever serious, but a normal CT would be nice.

OK.....off to go find something to eat......Gotta make sure it's something light~ My bowels move so slow that what ever I eat to night will be in the pictures tomorrow, haha.

Until Next time......

Some of my favorites...

2009-05-02T22:18:00.004-04:00

Thought I'd transfer some of things that I have written in my Myspace account over to here....

Here's the letter I wrote on my 30th birthday:
So…on Easter Sunday I will be 30. And I’m not too sure I’m happy about it. Don’t get me wrong, I’m happy to still be here……..I just feel like I’m way behind! I’m suppose to have some kind of career by now. ….And a house instead of a broke down trailer in the middle of the ‘hood’….I want more……I’m sure there’s many of you out there that see me as a girl who sits and plays with her toys all day long, while the bf goes to work to pay to bills……If that was only half of it……You think I like living off a man……I don’t. I want my own money….My own independence. But, isn’t that what life is all about….Wanting more, wanting the best. For a long time, I have just felt blessed to be here……17 surgeries later, and I’m still alive. No, I don’t have an illness with a death sentence……Instead, I got sentenced for life. Ugg!!! Yup!….Today I’m having a pity party, however I don’t want your pity, Hell I could care less what any of you think of the situation! I can’t change it….spent many years in therapy to learn that….but I can learn to live with it! I have found out the hard way….Most people can’t handle me being sick…or they simply just don‘t want to ‘hear it‘…. I wish I had that choice. Even when I run from it….it follows me. Some days I don’t want to fight it any more….some days I feel the need to conquer the world…….and some days I just want to pull the covers over my head and pray that when I wake up everything will be normal again….LOL, What is normal anyways? I seem to have forgotten. So here’s to spending my 30th birthday, with my family…..on Easter. I only wish I could get the bf to come with me….Guess I’m not as exciting as his friends are on their birthdays? Oh well……Life goes on….

Here’s to making it a whole year without having surgeries! April 16 2008 was my last, the doctors went in to remove a cyst from my breast, and came out with a tumor…Lucky me still has the cyst, Woo-who!

Here’s to my insides not falling out again, and to all that physical therapy I have gone through to reteach my bladder and bowels to work right……Thanks to the wonderful people at Sentara PT for helping me get here. And to my Head doc for keeping my head above water……

Here’s to Not getting a pacemaker before I turn 30! ……here’s to finding the best Heart surgeon I could~ and here’s to going through 3 heart surgeries…Oops…I mean 4, forgot about the first one when I was 2.

Here’s to the 20 pounds I’ve gained!! *Here’s to having my ass back! Woo-who

Here’s to ALL my Blog friends (*and a few of you Myspace peps! You know who you are!)…from Wisconsin, to New Zealand to Wales…Thanks for keeping my mind off being sick! Thanks for encouraging me to build my dreams…….

Here’s to my BEST girl friends…..Why do all of you have to be so far away?? From Arkansas to South Carolina to Pennsylvania…I miss you guys!

Here’s to starting the teen years with my kids, I only pray they don’t follow the path that I did!

Here’s to my bestest buddy…Thanks for always being there when I need a friend, even though you’re a big dummy sometimes! I still love you!

Here’s to keeping your promises…You know your word is all you really have to give.

Here’s to the fuckers that took what didn’t belong to you…May you have a life time of what’s coming to you!! My kids should of never been involved!!! Shame on you!!!

Here’s to not letting other people’s happiness get in the way….Or their drama…..or my drama…

Here’s to the next 30 years…….Can’t be any harder than the first 30 years……..LOL, Maybe I shouldn't say that out loud, huh?? Here’s to the Prime of my life, as a friend recently put it ;)

Here’s to the cats……Thank you for keeping my darkest secrets to yourself……

Here’s to seeing the world…..one small step at a time…..

Here’s to my Mom…THANK-YOU for teaching me what it means to be a strong woman…..and never letting me give up.

So…here’s to many more birthdays…..and hopefully only a few more surgeries……Life goes on…. Right?

A Letter I wrote about stress:
Gees, I'd really like to sit my doctors down and explain to them STRESS!

Stress is when you can't get a follow-up after surgery for 3 months, then the day before your suppose to see the doctor, the nurse calls to say that she has to reschedule you for a month and a half down the road.

Stress is when go to the doctors and are suppose to get a follow up with a specialist to check on something pretty major....and your are forgotten about. And I have even been nice enough to call and remind them, SEVERAL TIMES!!

Stress is when your insurance company thinks you've had enough physical therapy, and your doctor thinks differently. Stress is waiting to find out whether or not it has been approved!

Stress is when you take paper work in to have your doctor fill it out, and they send it to the wrong place. Or the paperwork gets shifted to the back of the doctor's desk, and is forgotten about. And then certain companies think your lying cause the paperwork is MIA.

Stress is having to go in to a new doctor and explain my 16 surgeries, and relive the horrific details, over and over again. Hello, I have a hard enough time remembering it all....and if I don't tell the new doctor something about my medical history, it's like it never happened. Yup, what you say to one, and forget to tell another, will make you look like a liar in front of a Judge! Oh, and if the right paperwork isn't in front of the judge, it's like it never happened.
UGGGGG..... I could pull my hair out this morning...

....oh, I almost forgot....
Stress is when you hire a lawyer to handle your case for you, and she drops off the face of the planet....not that I was all that impressed with her from the beginning, but still......HELLO, It has been 4 months since I have heard from her!

Here's a really great link:
A friend of mine sent me this link, and I just wanted to pass it along to you. I don't have Lopus, however, I can completely understand the 'Spoon theory'!! It's a great way to explain what it's like living with a chronic illness! Check it out.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

A thought on Life:
What do you believe????
I believe in the human race. I feel like earth is God, our mother. She gives us everything we need to live~water, land, air, ect. And as long as we take care of her, she will take care of us. But, we as a human race are not. So many people are caught up in greed they can't stop to see what they are doing. Technology is a good example. Why the hell would anyone build a Nuclear warhead? HELLO? We all have to still live on the same planet! You can't take your money to the grave with you and yet we all depend on it to 'survive'?? And what does survival mean?? To some people it's having the biggest and most expensive THINGS. I want to know I lived! I want to smell the roses everyday and say thank-you for putting them here to show us your beauty. I want to stand at the top of a mountain and take in her warmth. Do you follow? I agree in giving back, and I agree with your statement about treating others the same way you'd want to be treated. I believe in Karma, and what you do comes back to you!

And I'd like to end with this point. I think people rely on the idea of GOD to much. I know someone who said he found GOD and was cured of his lifetime addiction to drugs and lies, and yet it was the biggest lie he ever told. Why not believe in yourself? Being at the hospital this past week, I have heard my fill of GOD. GOD will make it better, GOD is there for you, things like that. Now, I see it like this. I believe in my daughter and every time she says she can't, I say she can and she does. I keep telling her how brave she is and how strong this is going to make her. I want her to believe she can do anything if she puts her mind to it....OH MY~I SOUND LIKE MY MOTHER!! But she was so right. People need to have more faith in THEMSELVES and not some idea.

April 25, 2007
On another note....... I had a moment this morning, and wanted to keep a hold of it. A friend compared Life to a Rollercoaster and I wanted to add my two cents. Even though I have never been on a rollercoaster, I can still voice my opinion, right? LOL ..Is your seat belt on tight, hun? Cause this rollercoaster you speak of is bumpy, and curvy, and it is designed to give you the ride of your life. You just gotta learn how to hold on to what matters most and let your hair blow in the wind along the way. Even when you ride it for the first time, you have no idea what to expect....but you know there is an end. And when the stupid thing makes you puke, You say, "Damn, that was fun, I'm doing it again!" We all do it, right? And you know there is generally a BIG ASS sign at the entrance of a rollercoaster, that reads something like "Caution, or Warning." But we stand in lines for endless hours, waiting. Waiting on our 2.2 minutes of freedom.

A Poem:
'I Will Survive'
It eats at me.
Every day,
I can feel it.
But we can't always see it.
I have to stare at it for awhile,
Daydream,
Put myself into it.
Ask myself where is the truth in it?
Surround myself with it,
Become it,
Drown myself in it.
Remembering I need air,
Forgetting all the rules,
I submerge.
With every breath I take,
It comes to.....
I've survived,
I will survive!

Another Poem:
'Katrina'
They said it was coming,
and no one would listen.
I said it was coming,
and they would not listen.
They said it would be the storm of the century,
and no one believed.
I said it was the beginning of the end,
and they said I was crazy.
Well, the storm moved in,
and THEY had to listen.
Devastation was everywhere.
THEY had to act fast!
But THEY were too late.
Total destruction, total chasos.
Now, when all was said and done,
THEY remembered.
Someone had said it was coming.
I said it was coming.
But no one would listen.

I realize that you may not understand the karma here. Let me explain. The day of hurricane KATRINA~ I, Katrina had emergency surgery. I had told the doctors for months that something was wrong, and they didn't listen until it was to late. Moral of the story, TRUST YOUR INSTINCTS!

Dis What?

2009-04-30T09:22:00.004-04:00

So what is this dysautonomia crap anyways???? Well, for me to explain that, first I gotta tell you what your Autonomic Nervous System is. It's the system in your body that controls all the involuntary things that go on in a day. The things you don't think about. Breathing, blood pressure, temperature regulation, your bowels and bladder working........ It's responsible for making your 'engine' run. Did you know that everything in your body is ran off electrical currents?

Dysautonomia Information Network-
http://www.dinet.org/index.htm says:
"Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates."

National Dysautonima Research Foundation-
http://www.ndrf.org/ says:
"Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment."

(BTW, both those sites have really good info on this!)

Ok....you with me?
So.... "dys" means impaired or dysfunctional...... And I just explained the autonomic nervous system.........So
In other words....My Autonomic Nervous System is dysfunctional.

LOL...now my head hurts! It crazy that I can totally understand it in my head, but when it comes to explaining it......I am at a loss for words.......
Brain Fog?? Maybe.....hahahaha.........

OK.....Now to really confuse you........
About.Com-
http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm says:
"The autonomic nervous system controls the “unconscious” bodily functions, such as heart rate, digestion, and breathing patterns. The autonomic nervous system consists of two parts: the sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are necessary when an individual is in danger or under stress. The parasympathetic system controls the “quiet” body functions, for instance, the digestive system. In short, the sympathetic system gets the body ready for action, while the parasympathetic system gets the body ready for rest. And in normal individuals, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs.
In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent, vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, anxiety and (quite understandably), depression.
Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) "

Have I lost you yet?? lol
I know it's a lot to read....but I can't explain it any better.

........I'll let you digest this.....and I'll be back later to talk more about it.
Until next time.......

....moving along.....

2009-04-30T08:59:00.003-04:00

So....yesterday sucked, too. LOL........Went to lunch with my bff, had my usual french toast with an over easy egg......and found myself in the bathroom before I could even eat half of it...I think my stomach is still on that crazy migraine ride from yesterday....It's going to take it a couple of days to balance itself out. We had to come back by the house, so I could get some 'drugs'...and then headed to Walmart for some groceries. (This is where I tell you that, that's my exercise regime for the week....A stroll around Walmart, woo-who! The bff has been taking me to lunch and 'walking' me for years now....It's nice to know that someone out cares, huh! Came home......spent some more time on the pot.......and watched movies all night. Woke up this morning......and my BM are still like water. OK........... enough all ready! Can we get back on track here??? Hahaha

Called that nurse again about my CT, and wasn't that impressed with her tone. Not like it's the 4th time that I've called her or anything. She said she tried to call the place last night and they were closed? Ummm? Why are you calling them at night??? Duh!! So, now she has me set up to do my CT at the ER?? Not sure if I understand why? She said she's not from the area......so she didn't know where to schedule it.......I dunno......... most normal people would schedule the appt at the hospital, right?.......But what ever....I just want it done! So, May 6th it is.

Even went by the Physical Therapists office and set up my consult appt for today at 4. *This way, me and the PT can catch up and see where we need to start. Vacation is Over!! LOL

Still feeling Yucky today...Stomach is not ready to play nice yet......chest hurts~ breast pain? heart pain? Who knows?? ..........Very tired- Stressed!

*Cold sore is finally gone! Last part of the scab fell off yesterday :)

MUST DRINK FLUIDS!!!.....and go buy toilet paper. hehehe

I'm here.....

2009-04-29T08:40:00.002-04:00

Just trying to get my electrical system in the house working right.........

And my body isn't helping much. I over did it again with the kiddos this weekend, got the bright idea Saturday morning that I was going to crawl under the trailer and clean ~that's where the electrical stuff is, and it's really hard to get to.......Not anymore :)!! Even thought about ripping out the power line to the TV in order to motivate someone to fix it, but didn't feel like playing that game, so I just cleaned. Took out 10 bags of trash...I know there was 10 because I counted them, haha .....And while I was up under there, I thought of 'my old life' and who I was suppose to be. Got to take out my frustrations while ripping out insulation!! Now that Was fun! .......I use to had a lot of spunk, and a Lot of drive.... Nothing was going to stand in my way ...Just ask my mom, I was very head strong to prove everyone wrong! I still have that desire to become more, but know it's not in my cards anymore. Sometimes I feel like this is a test, to prepare me for something bigger, but then I ask what in the heck could that be?.....You know how the old saying goes......That that doesn't kill you only makes you stronger?? .....Well enough already! I quit!

Last night I had a terrible migraine.....and nothing seemed to help. I took a half a Valium, and got enough relief to get dinner....But then the headache came back worse then the first time.......So I took a whole Valium, and nothing..... I went and laid down, but it just kept throbbing.....Then the vomiting began~ Fun! And after that I really felt drained, Yuck! I figured I'd try a bath to make the body aches go away......Not a hot bath, but just warm enough....And stayed in there for a few hours.......LOL, had all the cats coming in to 'visit'~ Otis even tried drinking all my bath water, lol, I swear....he just kept drinking, and drinking.....Normally he stays away from the tub~ Something about the bubbles scares him, but since I hadn't used any bubbles, he was really curious to see what I was doing. -Figured the smell from the bubbles might make the headache worse:( Anyways........once I was good and pruny, I got out...the bath seemed to have taken the edge off the pain. I finished up a Gatorade and watched TV for the rest of the evening.......

This morning, my headache is almost gone. Still feel drained! Woke up semi dry...... and even Remembered to take my morning meds! Woo-who! I'm on a roll! Now to go drink 3 bottles of Gatorade.............

Still haven't heard from the doctors office about my CT, so If I get the umph to get moving today, I think I'll just drive over to the hospital and go speak to someone......And while I'm over in that direction, I need to go set up Physical Therapy again.....I didn't realize it had already been a month since the last time I was there. Guess my vacation is over. Ya know, that's the one thing I hate about being sick....You never get a break! And I need a break! It gets really Old, really quick!

Where did this all start?

2009-04-23T21:02:00.000-04:00

My 'Electrician' (the electrophysiologist~cardiologist) seems to think that this probably started in my Mother's uterus..... Like something didn't line up right in my DNA or something. There have been things along the way that suggest so. My early heart issue~ I was diagnosed with a heart murmur at 4 months old. Then under went a heart cath at 18 months and was diagnosed with Mild Aortic Stenosis........and then some where along the line I out grew this?! I was sweaty as a baby, especially with eating or sleeping.........I had eczema as a baby, and psoriasis since I was a kid. Still get Eczema every once in awhile...and when it flares up, it flares up! The psoriasis is confined to my left ankle for the time being.....still a little confused as to why just one ankle, but OK. As a kid I had it on my elbows and knees~ got lots of rude comments about that issue! I've had IBS for as long as I can remember......just never knew it had a name as a kid. I remember sleeping on the bathroom floor because I got tired of running back and forth to the bathroom at night. I had a 'bone' that grew through my sinus cavity somehow that they chiseled away at 3 times. I had bladder issues.....lots of UTIs as a kid....and now that I'm glancing over my records, I see I also had trace amounts of blood in my urine even back then. I'm sure there's other things......somethings support the idea of dysautonomia, and other things are just flukes of nature. If I had a dollar for every time I've heard...I've never seen that before, or your never going to believe this....I'd be very rich. (My favorite was when I was on the OR table in the cath lab, and I heard my doc say "Um.....'John' Can you come here for a minute, I've never seen anything like this" .....Now, that's not funny....they shouldn't be aloud to say stuff like that, lol....We're they trying to freak a girl out or what??

Then again I'm sure going through 2 cycles of the Lupron Injections wasn't the best thing for me. Nor was the epidural I had with the birth of my last son, it didn't work for the delivery, but I don't think they believed me...It was left in my back over night so they could use it in the morning to do my tubal ligation, and it wasn't till they had me on the OR table that they realized that I might be telling the truth. I remember the doc pricking my leg with something sharp, and my flinching. Then the other doc asking him if he'd giving me enough..... Then that doc said 'I've given her enough for a six foot man, she shouldn't be able to feel her nose by now'...and like that I was asleep. Something wasn't right there, but, Hey, what do I know?? And then again...........I'm sure having 3 kids before I was 20 wasn't exactly good for me either. Took a lot out of my body! But, Like my Aunt once said to me.......if I hadn't of had them then, I might of never of been able to have them. So I feel blessed, And I get a reason to get up everyday!

So when one asks how this all started, I can't say for sure. Your guess is as good as mine, I just know it is was it is, and always has been. I just didn't understand a lot of it until recently. And still, I am horrible with terminology.......and terrible at explaining things with out confusing you first.

Next time I'll try and explain what dysautonomia means......

2009-04-23T20:49:00.001-04:00

...called the nurse at the urologists office today to see if that CT appt had been made, and the nurse said she'd get to it before the day was over...............still waiting on her to call back?!

Bf survived the root canal, and rather amusing at the docs office. He doesn't go to the doctor much...so when he does, It's a Big deal, lol. As he was filling out the forms...he was asking why they needed to know this or that, cause it had nothing to do with his teeth! Hahaha.....try filling them out 3 times a week, and now you know why I have it all typed up, haha....When I go in to appts, I take it with me, and ask them to copy it and stick it in my file. He doesn't go enough to have a list.....and had me giggling the whole time. Poor fella........

PVC's still active. Mild headache this afternoon. Dizzy...I did start the new med...no weird side effects so far:)

Ideas on getting medical records:

2009-04-23T08:03:00.000-04:00

Yesterday was a normal Wednesday.......Nothing too exciting. Still waiting for someone to call me back about my CT...I'm ready to get er' done! I did manage to get out the house for a couple of hours. My best friend is off on Wednesdays, and it's been tradition for about 5 years now for us to go out to lunch. And I get my walking in! My IBS did act up a little...and after dinner it started acting up a lot so I took a Levsin.....and all was better. Went to bed early.....tired as hell. And then sometime this morning...it was still dark out, I woke up really really nauseous.....And then spent 30 minutes in the bathroom vomiting. I never throw up....well hardly ever, ODD! Even when the kids gets the flu, it always skips me......I have never understood why, but OK. You know I've never even had the Chicken Pox either, all of my kids have and I was around them every day....and still never got it. Just one of those things I guess.

I did sit down last night and tried to find something from HIPPA explaining how to get YOUR medical records. A few years ago, I went into a neurologists office to get copies of my medical records. At first the girl told me it was against the law.......and I knew this wasn't true....and told her It was against the law for her Not to give me them. I left, went home, did my research and returned with a typed written request:

Dear Dr. X, March 18, 2008
After speaking to a lawyer about getting my medical records, it was advised that I
ask in writing for the records. I, Katrina X, am requesting copies of my medical
records from 2005. I also need copies of the EMG report from August 18, 2005. I will be
in on Tuesday March, 25 2008 to pick up these records. If I can not get these records, I
have been advised to contact the Medical Board.
Thank-you,
Katrina X
DOB: 04-12-19XX

Anyways.....that neurologists office really fought me on it.....and I ended up getting my records before it was all over. Now, there was a $15 'research' fee...whatever that was.........Mind you, when I first went in to get my records......the lady turned around to the shelf behind her, pulled my records off, and had them in her hand....And yet I'm suppose to pay them $15 dollars to find it. WOW! I coulda gotten it myself.

So...My point? Federal Law states that we are aloud access to our records unless those records contain information about your mental health that could hurt you. Or something like that. Here's the link to this information:

http://patients.about.com/od/yourmedicalrecords/a/getmedrecords.htm
......and if you scroll down they do have a place where you can find individual state costs for getting records. There's also a suggestion for how to obtain your records if your broke...

I know it's hard, and There Will be nurses and staff out there that will give you hell about getting them. But they are yours to see. I do believe you can even go in and request to sit down and look at them. I'm not sure how these Laws will change, seeing as everything is going into computer now. But they are your records! You also have to remember that they are only required to keep your records for so many years.

It also helped me that I kept every calendar that I ever used, and wrote down most of all the doctor appts I went to....It does help to have these dates.

Also......just ask your doctor for copies of things as they're done. I have been through my share of doctors trying to find the best of them, the most helpful ones I could. And most of them know I'm going to ask for copies of things, so they'll have them waiting. Or ask me if I want copies! Don't be afraid of them....they put their shoes on the same way we do, lol, I used to be so intimated by these people, but Not anymore. I have realized they are only human too.

OK...that's about it for now....I'm gotta take the bf to have a root canal done this morning.....Fun huh!
......Be back later......

oh.....My new neurologist has recently switched offices. And I got a letter in the mail stating that I had to come down and sign a release form to get my records sent to the new place. So I went in, signed the paperwork......Then got a bill for $18!! I have since talked to my neurologist and told her I thought it was BS......and she agreed. She said is was in her contract that her records went with her.....and told me not to pay it. She has since gotten my records, and told me I could get my copy the next time I come in. As far as not paying that bill, I don't know if that's a great idea, I always end up on the shitty end of this stick, and could just see myself now getting dragged into court over $18. For $18, I want my own copy, Please!

Survival Tips

2009-04-22T08:37:00.000-04:00

Finally got my meds straightened out. You know...about 2 years ago I refused to take any medication! I had taken bladder meds and it made my bowels stop....and the hormone therapy is the suspected culprit for my PVC's.....So, I was at that point where I wanted to rid my system of all that junk, and see where I was at. I still refuse bladder meds.......My bowels hurt way to much to not have a bm everyday~ I know, I know...You really need to hear about my BMs, huh. But seriously........My bowels are very finicky...And I've learned the hard way how to do this. Well get back to this in a minute...First lets get back to the meds. So...here it is a couple years down the road.....and the top shelf of my bookcase now looks like a small pharmacy.

Current Meds are as follows:

*Metoprolol 25 mg 2x a day (For SVT~ fast heart rate)

*Amitriptyline 25 mg 1x a day (For Migraines, depression)

*Valium~ Diazepam 5mg...as needed for everything (muscle spasms, migraines, sleep, anxiety) I use about 10 pills a month...

*Levsin 0.125 mg~ as needed for bowel spams.....can't take them too often or bowels slow down

Recently started:

*Fludrocortisone (Florinef 0.1mg....still reading about this one..... used to treat Orthostatic intolerance)

Also use:

*Prelief for cutting the acid down in certain foods you eat.

*Tylnoel for headaches

*Mucinex DM for congestion~ doesn't interfere with heart rate!

*Abuterol inhaler used when needed.....seasonal

Other measures used to cope...

Diet! No fried food. No caffeine or NSAIDS. No cold drinks~ room temp is best. NO CITRIC ACID~ well at least try and avoid it! Fiber when needed~ stomach is so 'simple' a bowl of Raisin Bran can make it go either way. Lots and Lots...and then some more Fluids! Gatorade every day! Oh...and start each day with a glass of Carnation Instant breakfast...easy enough for my stomach to digest first thing in the morning, and I get a good dose of nutrients! Hot baths help with abdominal issues, but don't help the heart issues. Showers totally wear me out.....Laying down to catch my breathe after helps!

*And another key to survival is to have a good 'team' of doctors. I have been through my share of doctors....and I do believe I have finally found some really great people. Most of them are younger, they tend to think more out of the box then the older folks do. They don't work together..but are now linked up on there online system they have here. And they all send updated letters to my primary care doctor on a regular bases. I have been through a few PCP too before I finally found one that was willing to sit down and look at everything......and not insist that I was crazy. I guess it helps that I see a head doc to who agrees that I'm not 'Crazy'. I feel crazy some days....and there's some doctor out there that I'm sure will say I was crazy. I do tend to act a little off my rocker when people don't listen. Especially when they insist that I get psych help to then see my insides fall out 3 days later.....So, who's really the crazy one here? Me for knowing something was wrong....or them for not even bothering to look until it was in their face?! Yes I have some hang ups about that whole period in my life. I'd still like to wrap my fingers around a certain ladies neck and choke the stupidness right out of her! All I can say is Karma has a funny way of coming back around, doesn't it.

Well...I guess that's enough babbling for day.....Until next time!

OH Wait....One more thing.

Medical Records.....Start collecting your medical records now....I have probally 75% of mine.....and it helps. It helps you remember where you've been and what was done, said, ect. I have a master list of surgeries, with the date, procedure, hosipital, and surgeon written on it....Then I have another list of all the doctor appts, tests, ect. I have had since I was an adult. My childhood records are about an inch thick, in one of those orange military files, and you can barely read it....but I have it! My adult records stack up to be about 2 feet tall.......lol.

It's alot easier to show someone what your heart rate looks like than it is to try and explain it!

How should I know??

2009-04-21T17:25:00.001-04:00

Last week is finally catching up to me...all I want to do is sleep!

I got a package in the mail today from the urologist.....it seems they tried to call me Friday and due to my phone not working , I missed the call. So they sent me everything I needed. I'm scheduled for a Cystoscopy in the beginning of July. Still waiting on my appt for the CT...i tried to do it earlier, and the scheduling lady had me so annoyed, I told her Thank-you for Not helping me, and hung up. Then I called the nurse at the doctors office, explained to her what had happened, and she said, she'd take care of it. So....now I'm just waiting on her to call me back.

And I probably shouldn't of been nasty to that lady, but she was really working my nerves! Kept asking me questions that I didn't know the answers to, and when I told her I didn't know....she replied with something along the lines of Well, the computer won't let me go any further unless I answer this question....Very annoying! How do I know what the diagnoses is? The stupid test hasn't been done yet?!?!?!

Went and saw my head doc this afternoon. Babbled on the whole time.....fussed about how I wish someone could just wave a magic wand and make it all go away! Got a headache from crying.....and now I have a migraine from that lady!!

Still have to go to the pharmacy to pick up my meds....and then head over to my youngest one's school for his recorder concert...that outta help the headache, huh! LOL....Anything for the kids!!

Woke up soaked this morning.....heart is still skipping beats....and my back hurts.
Other than that pretty normal day.....so far.

Explanation of the Pictures...

2009-04-20T10:04:00.000-04:00

Thought Id explain some of the pictures on my sidebar for ya. The first one is me....taken when I was around 24ish? I edited it a little...Thought It looked better in blue.

Next we have the one that reads "And how do you feel today?" I did that one about 4 years ago....Got really frustrated one night cause I was tired of explaining how I felt...and got to thinking...If I could just draw a picture, and so I did! ..... Yes, The white part across the legs is suppose to be white...I can't feel anything in this area? Nerve damage with surgeries~ so I left it blank, lol.

The Profile Picture is of me and My Mom in Scotland....We're on one end of a see-saw, and my Dad was on the other....

Next is the one that Reads "Art that soothes my soul" This is one of a collection of colored pencil drawings that I did in my early 20s. This one is the most kid friendly, so that's why I have it up...

LOL...Next is a picture I did the night I was in labor with my oldest....I was 16. I got the original picture in school, it was a watercolor done by someone else. Never did manage to keep that artists name...Anyways, I did it in colored pencils. Sat at my Mom's kitchen table 'coloring' all night!!

And the last photo is of the balloon that was in my abdomen for a month, holding my bowels up.... Some days I still just have to look at the picture to believe it wasn't just a bad dream. Unreal!!!!!!

Art has helped me get through so many obstacles in life. Some people run, some people eat, some people turn to naughty vises......I color, lol.

The stages of Grief

2009-04-19T20:15:00.000-04:00

When I started Counseling for the second time.....the first thing they taught me was about Grief and how when your diagnosed with an illness, that you will go through the same process.

I found this link which explains it a lot better than I could....
http://ibdcrohns.about.com/cs/mentalhealth/a/mourninghealth.htm

For me...here's where I'm at with each of these~

*Denial: I think I'm passed this, I know it's here to stay and that it is what it is........I wish people around me could get over this part, though!

*Anger: This I go through often! I'm still pissed at a few doctors.....I have big issues with religion over this...... and, well, I have people issues in general.

*Depression: OK, now who wouldn't be depressed.....I can't have the life I want, I have to settle for second best. Some days, I look at it as if this is as good as it gets. And other days I'm on some crazy mission to be something I'm not any more. I want more outta life than this...

*Bargaining: Yup! Still have days where I think I can run from it, but believe me....it always follows. lol!

*Acceptance: Funny thing is, I do accept this, I've been living it for over 10 years now....Again, I know, there will be good days and there will be bad days........I live for the good days. And yet another one of those things I wish people around me could do more of.

The first time I sought mental help.....I was still trying to play wonder woman. The doc I saw at the time spent many, many sessions trying to convince me to Slow down. She told me I needed to accept that this may be what it is, and that I was going to drive myself crazy trying to change it. I didn't listen to her....I still had a lot of drive left at the time, and I refused to accept this for what it was. I felt like I could change it! I needed to fix it! And then, I crashed and burned!!!

I can honestly say it is easier learning to live with it, then it is trying to fight it. Takes a lot less energy!

Just ranting....

2009-04-19T19:37:00.000-04:00

Today's symptoms:

PVC are still present......Stress??

Left breast hurts and the pain/numbness is still running down my left arm........makes one wonder if it's coming from my breast or my heart?? Not a really pleasant feeling.

Cold sore is healing...

Managed to get in a two hour nap this afternoon.......I'll be able to catch up on my rest this week, when the kids return to school. No doc appts scheduled yet......Still awaiting call from Urologist, but seeing as the phones have been down here, not to sure if he's tried calling...Will have to take care of this first thing tomorrow.....and ask for my meds to get faxed. They were suppose to be faxed over on Friday, but pharmacy has still not received it.....Just a little frustrating.

Now as far as my emotions are going today.....They suck! Just having one of those days when reality hits and I feel like I'm stuck between a rock and a hard place. You see I haven't worked in almost 5 years. I've been trying to get disability...but have been turned down due to my age, and level of education. The judge feels like I could do a sit down job or something. I used to manage a fast food restaurant...a job I loved! Loved the fast past of the rat race, and the hours, and the money.....and the health insurance! But I know that my heart would never allow me to keep up in that world again. I could just myself spinning around to do something, passing out because I moved to fast, and falling over into a fryer or something. But that doesn't mean that I don't miss having a 'career'/ Yeah, I know fast food isn't a career that one grows up wanting to be, but it was where I ended up, and for the most part I loved it. The people made it little hard on me most days. Other employees didn't get why I got certain days off.....or gripped because I was taking too much time of. Some days were just bad days, and when you don't 'look' sick, some people just don't get it. (This was also before I finally got a good heart doc to listen to me.....a time when everyone still thought I was crazy.) I live with one of those kind of people.....which is the whole reason I'm in this frame of mind to begin with.......I AM SO TIRED OF LIVING OF A MAN'S MONEY! Life was a lot simpler when I had my own money, when I had control. Being sick has sucked the life right out of me. I barely have enough energy to argue with the kids...I damn sure don't have enough energy to argue with a man about something I have no control over. It's days like today when having a pacemakers sounds good. I want to be able to run circles around that ass and show him, that's it's not 'me' that's doing this....that's it's my dysfunctional electrical system. I have giving up so much already. I didn't finish college....it was the first thing I took out of my life in order to better control my stress level....next went the job. I can't give away the kids.....They're the whole reason I get up everyday. They're the whole reason I haven't shot myself yet. They didn't ask to be brought into this world, I wanted them........I don't care if it kills me in the process, I will never give up on giving my kids the life they deserve! The only other stressor in my life happens to be the person that keeps a roof over my son's and my head. Somedays, it's just so much easier to listen to it, but then I ask myself....is it really worth the bs??? If I could hold down a job I would.......but I still haven't figured out how to work around the surgeries, and the Physical Therapy, and the tests, and doctor appts.......And the kids and their doctor appts....... Who's gonna want to hire someone with this??? I know I wouldn't.

There's so many what ifs..............it's hard! I guess I'm just going to have to bite the bullet and do something......I need my independence back!

Gotta love the night sweats!

2009-04-18T10:37:00.000-04:00

Woke up 'damp' this morning. PVC's are still annoying me, and my breast pain is running down my arm......But I've got a smile on my face.........And there's no one in sight! A whole day to myself!! WOO-WHO!! Now let's go see what I can get done.

Today's Verdict...

2009-04-17T23:44:00.000-04:00

I saw my Urologist today.....for a 3 month check up.

You know, it's always fun at this docs office. Some days I'm not a very nice person, and some days I can tolerate anything. You see, he's part of a team of doctors that are affiliated with Eastern Virginia Medical School. Yes, I see the best of the best now......no more wasting my time auguring with doctors about something I know 'is what it is'. But the thing about being seen at a 'Medical School', is you also get to entertain medical students. Now, way back when I had my kids, I lost all hopes of ever being a modest person....lol, Come on, You know you get to a point where you don't care who looks....but now, on my evil days...I don't want 3 eager (males in their early 20's) medical students peering into my vagina to 'have a look'. By now my doctor knows that I do this.....so lately I have noticed that he only sends in one medical student....and they have all been women....lol...I know the day he sent those 3 poor students into my room, they had no idea what kind of a day they were about to have...lol.....

But, like I said, with time, me and this doctor have come to understand each other....... And I think he's amazing. He actually listens, and will sit and talk with me if I need it. And when I tell him I think something weird is going on, he doesn't insist that I speak with my shrink first......lol...... I've done several rounds of physical therapy, just finished up 13 weeks of it not to long ago. I know, I should be in continually PT, but sometimes, even I need a break. It has become my 'job' to take care of myself. I'm learning as I go.....some good, some bad.....but I'm learning.

So, my visit went well. My blood level in my urine read "LARGE" ~ I know this because the nurse wrote it in such big letters I could see it from across the room....don't worry, this is normal for me.....I tell the doc all the time, that the day he tells me there's no blood in my urine, is the day I'll get scared! I have Interstitial Cystitis (called IC for short) and have had it for almost 10 years now. Before I was diagnosed, the docs thought I kept getting UTIs, and told me to drink lots of Cranberry juice........And I drank a lot of Cranberry juice, so much I started peeing straight blood.....that's when they sent me to a specialist and I learned about IC. Did you know that they call Cranberry Juice the Acid Bomb in our world.........It has more citric acid than anything else.... Over the years I have learned to try and stay away from citric acid, but it so hard, as it's in almost everything. One day I'll drop of the 'can eat' and shouldn't eat' list....and they wonder why I have 'eating' issues.....they took all the good stuff away from me, haha! OK......so my doc is scheduling me for another Cystoscopy and a CT of my abdomen. Just routine follow-up....haven't had either one done in a couple of years, so we just want to make sure everything is still where it belongs. I have one ovary left, that normally has a cyst sitting on it, and a hole in my kidney?? The whole been there forever, too.....docs say it's just a birth defect...nothing to worry about, and so far in life, I haven't had any problems with it. Both are pretty simple tests......a walk in the park for an ole' pro like me.......Hahahaha!!

.....My doctor did say to me today, that I look better than I have looked in a long time!! I'm starting to finally gain weight again.....no more hollow cheeks here!

Other symptoms today:

~Left breast cyst is hurting.......I'd like to cut it out myself! Good thing I can't stand the sight of blood, huh!

~And my heart's been skipping beats again today.........Again, normal for me.............I was just hoping we were past that part of it all. The EP doc told me that one day they could come back, but I was hoping to get a little more than a year an a half. They're still not as bad as they have been.....But they do drive me crazy!!

~Oh, and I have a cold sore that started about 2 days ago.......Either it was stress, or getting dehydrated....or the combo of the 2. Damn Lip.....hurts like a son of a gun!

Hello....It's nice to meet you!

2009-04-16T11:05:00.000-04:00

Welcome to a place where I will teach you to make the best lemonade outta life. This entry will be short, just wanted to get this blog started before I change my mind.

I'll be back sometime with all kinds of interesting things...
Until then....
Katie