I know...it's been awhile!

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

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??

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!!

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

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.....

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....."

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!!!

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!

.....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.

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!!

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:)

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!!

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

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?!

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...

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...

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:)

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....

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.....

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!

...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...

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...

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!!

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:

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....

(*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!

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...

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....

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

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!

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...

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!!

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.....

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...

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