Friday, September 25, 2009

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'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. 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 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

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 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 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!

Sunday, September 13, 2009 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 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!!!


Thursday, September 10, 2009

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 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:)

Wednesday, September 9, 2009

Surgery went Fine!!

So, I'm home....and doing good. Surgery went well....the surgeon feels like she got it 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 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!

Sunday, September 6, 2009

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.

Tuesday, September 1, 2009

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 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!