Pre-Op...

I know I don't post that often....but hey, life gets in the way sometimes. And sometimes I feel kinda stupid keeping this 'diary' of sorts. I mean, I'm 30 years old not some 12 year old bitching about boys or school or her mom pissing her off. 

I have a real-life disease that quite a few people have althought it's a 'rare' autoimmune disease. I do these posts as another reasource for others who have been diagnosed or are recently diagnosed with MG so they can understand my symptoms, compare and know they aren't alone.

So anyway... My Thymectomy is scheduled for this Monday. There are few things that are up in the air with the procedure and understandably so. Frankly, I am scared shitless. I have had my fair share of surgeries (which turned out to have been unnecessary because it had been MG all along if the damn doctors just woulda ran the 'right' blood work) but this is different. My surgeon is going to try to do the thymectomy Thoracoscopicly, however, I have some scar tissue in the area where this will be done from a prior surgery. Therefore, if the doc can't clean out and clear all the scar tissue to do what he needs to do then they will have to do the full sternotomy. So which procedure they will prefrom in the 4-6 hours I will be in the operating room is 'up in the air'.

The not knowing of which procedure that is being done until they decide to wake me up is what has me a little freaked out.

I like to be prepared!

I'm not keen on having my chest cracked open and being out of commission for 3 months but I am being optimistic that the scar tissue is not severe enough for it to result to that. But hey, if you have to crack my chest, can I get a boob lift while your sewing me back up?? Would be much appreciated.

Thank god for these MG supposrt groups I have came in contact with. Nice to know I am not alone and I am not the only person who has had/having this surgery. They have helped with what to expect post-op. It's a good thing.

For now, I bid you fair well until sometime during my post-op recovery.

Post holiday madness...

Well, finally the holidays are over and I survived...barely.

December was a crazy month.

Finally got the ability to paint once again (yes, I'm an artist of sorts). Lots of rushing to get special gifts for christmas done. Enjoyed watching my nephews and family open their gifts. Of course no holiday is complete without a little family drama (yes, there was quite a bit).

But I haven't stopped painting either. I have found that it keeps my mind busy and concentrating on just one thing as oppose to my thoughts being scattered by the MG and my impending thymectomy surgery at the end of February.

Can't say I am looking forward to it.... another surgery. To be honest, I am scared S**tless. Four to six hour procedure... uhh, yeah, woo hoo (insert sarcasm here). I have heard some horror stories about other MG patients experiences. At least I know what to look forward to and I am not taken off guard thinking the Doc f'ed up somewhere (yeah, that would be my first reaction). Lots of thoughts (good and bad) and constant, crazy dreams....

Did I mention my sleep has been off-kilter for the past 2 weeks or so?? Yep, sure is. No matter what time I go to sleep or what day of the week it is, I am getting up earlier and earlier. When it started I could handle the 5am wake-ups...then it jumped to 4 am...as of yesterday and today I am now up to 3 am-ish. RIDICULOUS! And once I stop keeping busy in the evenings or just relaxing after work? Forget it! I am lucky if I make it to 8pm before Mr. Sandman comes and screws me over out of nowhere!

Here's hoping this sleep-craziness stops....SOON!

First of all...

Ok, so this is my very first blog....ever!

I felt the need to start this after my research and such for information and support on Myasthenia Gravis.

Yes, I have Myasthenia Gravis. There I said it. It's been accepted and the initial shock has worn off.  

I was finally diagnosed last month (November) with the disease after the past 2 years (possibly longer with the more I read of different occurrences that I couldn't figure out but now make sense from years prior to the full on, kick in the ass, "here I am, pay attention to what's happening here' my body was telling me)  of unexplained falls, fatigue, foot dragging, weakness with everything, etc etc etc etc etc. (yeah, this list goes on) 

Short version....
Four doctors later, it took me to get to this point where FINALLY someone could tell me what the hell was wrong with me and why I was feeling the way I was feeling and not imagining the s**t that was going on. As progressive as this is getting, so far my doctor and I have gotten the physical aspect (i.e. walking without help and at a normal pace, also the 'don't give me anything to carry cuz I won't be able to lift my arm in 5 minutes) under control to a point where I am on Mestinon and so far seems to be helping with quite a bit of my functionality. However, when I started almost a month ago, it did kick the ocular part into full gear and we had to start the IVIg alot sooner than anticipated. I had my first full round of IVIg last week (5 days of being stuck with needles) and it brought my eyesight back to what it should be. But, it has left me looking like a heroin addict with as many times I was stuck. The damn catheters did not like me! I have small veins anyway but it was just ridiculous trying to get one of those damn things to stay in for the infusions. Several sticks and blown veins later, this is how I feel.

So now I am to these one day booster rounds for I don't know how long.

I have ellected to have the Thymectomy. I meet with the thorasic surgeon next Friday for my consult. I have read some horror stories on this (seems to be all I can find). I'm a stronger person anyway and the mention of having yet another surgery, especially the kind of this callibur, was scary enough...but now I'm just to the point where "Here's hoping it works and I come out of the hospital without someone screwing up!"  (can ya tell my confidence in hospitals are 50/50? lol)

So....this is a life long thing. Not everyone understands it or what I have to go through. I don't like my family and friends seeing me during a flare up or crisis...hell, I don't like seeing it, but it happens and then I have to take the 'babying' from my family. My friends don't understand why I don't go out like I used to or be as active as I was. (that has been the hardest for me as though. I maybe shy at first but get a drink in me to get me going and we are ALL having laughs and a good time at my expense)

This is what my late 20's and my 30th have brought me. I knew my body hated me LOL

I think for my 1st blog, this will do for now.

Thanks for reading my vent/sacattered brainness.