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....

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:)

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

Weekly Update

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

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

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

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

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

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

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

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

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

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

Until Next time......