One life to Live

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?

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!

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!

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

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...

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"

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:)