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:)