Thursday, May 26, 2011

It's a Wonderful Life

Good Morning all!  I guess maybe I shouldn't say things like "good morning", "good evening", etc. since you could be reading this at any time of day.  However, it's morning right now and I'm in a decent mood for a change so.... Good Morning!!!

I have not been feeling well since the fundraiser.  My pain has been worse and I have been more fatigued and weak.  My headaches are bothering me a lot more recently as well.  That is caused by both the POTS and the mito.  In POTS, they call it coat hanger pain, because it feels like someone is sticking the end of a wire hanger in the back of my head.  Okay, not really.  It's because the pain forms a coat hanger shape in the back of the head, shoulders, and upper back.  One of my favorite POTSy bloggers said recently that maybe she's being punished by mommie dearest for using wire hangers.  I second that!  I am this close (I'm holding my thumb and finger about 1/2 inch apart.  Trust me.  I am.  I swear!  Okay, you got me.  I didn't really do it.  But you get the point) to taking all of the wire hangers out of my house, just to see if it'll make me feel better.      
NO wire hangers... EVER!!!!
Since I don't have enough health problems, I decided to develop another one.  You know, I don't have enough excitement in my life.  (My eyes hurt from rolling them right now)  This one is a little bit more personal.  However, what the hell do I have to hide?  I won't go into details.  I promise.  I have developed uterine prolapse and rectocele; or pelvic prolapse.  They call it pelvic prolapse because usually more than one organ falls.  Pelvic prolapse is when the muscles in the pelvis are weak for one reason or another.  It usually occurs after menopause because the lack of estrogen in the body causes the muscles to weaken.  Sometimes it can be caused by surgery or child birth.  However, in my case, it was caused by the weakening of my muscles due to mitochondrial disease.

Here is a link to information about pelvic organ prolapse...

There are different stages of prolapse from 1 through 4.  My rectocele is a 4 and uterine prolapse is a 2.  The ultimate solution is surgery.  Especially since mine is at an advanced stage.  However, since I am a very high risk surgical candidate, that is not much of an option for me.  If it was life threatening, or could be if I didn't have surgery, then, obviously, I would have the surgery.   But, it's not.  So, instead, I just get to deal with it.  I am going to try pelvic floor physical therapy, but if that doesn't work, then I just have to live with my parts falling out.  Fun!!! 

On another, more pleasant, note, I have ordered my chair.  A guy came a couple of weeks ago and brought a two chairs for me to test drive.  However, I only tried one.  I had already talked to him on the phone about a chair I found online.  I had asked him if he recommended any other chairs because I had just done a little research and he knows all about different types of chairs.  He said that the one I picked would be a great fit for me.  It turns out that it was.  I loved it. 
I can't wait to use it!  It'll be SO great to be able to be independent when I go places instead of relying on someone else to push me in my manual wheelchair.  Here's a picture of it and a link to more information about the wheelchair.
Permobil - C300 Wheelchair
Unfortunately, it'll take 6 to 8 weeks to get it.  So, once again, I'm counting down the days for something I'm waiting for.  However, this time it's for something good; not a doctor's appointment or something.

Because the sale was so successful, we have raised enough money to go to the UMDF symposium in Chicago.  My husband, mom, oldest daughter, and I are all going.  We will be driving there as it's only an 8 hour drive.  We will be driving up there on Thursday and back on Sunday.  Unfortunately, I will not have my chair by then.  I should be able to rent a scooter, however.  I am really looking forward to it.  I really want to learn as much as possible about this disease as well as talk to other people dealing with it on a day to day basis.

Well, I have more to say.  Don't I always?  You know, I always wonder why my two daughters never stop talking.  Hmmmmm....  You think maybe they got it from me?  So, like I was saying... I have more to say, but I'm getting tired.  I will talk about the other things next time.

Much Love!!!

No comments: