Tuesday, January 13, 2009

I should have been in the circus!!!

I have been MIA, and that is my bad. So...*drum roll* I finally have a diagnosis on what going on with my hands and body,....and wouldn't you know it's hereditary...and wouldn't you know it can effect some people and make their lives miserable and other people it may not phase....(I am a lil bitter) I have Benign Hyper mobility joint syndrome. Yeah a syndrome....I now have two syndromes under my belt.......I have polycystic ovarian syndrome fondly known as PCOS and now the new syndrome. Joy!(SARCASM)

Here is some info that I got online about my new syndrome BHJS:

"What is benign hypermobility joint syndrome?

Benign hypermobility joint syndrome (BHJS) is a common source of joint or muscle complaints that often cause concern for parents, children and school personnel. Benign hypermobility describes looseness of joints that may be associated with daytime pain, nighttime awakening, or discomfort after exercise. Patients generally report multiple complaints of pain over a prolonged period. This type of general pain is often called, "growing pains," or "limb pains." Another commonly used term for BHJS is the benign type of Ehlers-Danlos syndrome ("type 3").

"Limb pains" and BHJS can be quite similar, but are different disorders."

Here is the link:

So I am happy to know what is up with my body. I am excited to know really. But there is no cure. I have to just deal with the pain, and just go on living life with the help of Tylenol. But on the bright side I can do some cool movements I didn't know I could do........hehehe.....I may just join the circus.

So on to my next big step/event in my life weight loss surgery WLS, I had my consult on Thurs Jan 8th rather than Tues cause there was a minor mix up. Some how I was not put into the system....but the lady there corrected it very fast and I still got to have my consult that week (Thurs)

The consult was good. It was very informative and the Dr. Diamond is very nice and well informed. His people are friendly and kind. I am looking forward to working with them. I was pretty nervous at my consult, as this is a very big thing. Life changing. I was given a run down of the surgery. What I would need to do before I can get clearance for surgery.....and so on. I just took all this info in. I know I had the "deer in the headlights look" I just smiled and nodded and wished I had taken a notebook in to keep track of the information that was given to me.

I have many different doctor appointments to look forward to. I am excited and nervous and scared. WLS is a big thing to me. I always thought WLS was a last resort. So at thirty and even more over weight and with my health suffering as it has been for the last handful of months. I know losing the weight will help my body. Because as I keep gaining this weight I seem to get sicker and weaker. Any diet out there I pretty much tried and succeeded and then gained back the weight, or more. So yes....I am allowing someone to cut into me to help me. If anyone had asked me if I would ever do WLS when I was twenty, I would say no. When asked why I said no, I would say there is no way I would let anyone cut into me. Never say never....*sigh*

So at the Dr. I got my notebook on WLS and I read it that night and highlighted it in pink :) I swear I might as well just highlighted every sentence...cause I did that (just about). I have read my notebook twice. It is hard work getting WLS. Lots of restrictions, lots of planning, it will be a lot of work. I know this will be a valuable tool in helping me get healthy again.

Today Jan 13th I got a call from the bariatrics center and they are sending me an order to go get a EKG. I also have an appointment on Jan 26th so the Dr can get a good look at my tummy. He is going to do a scope of my tummy.....just to make sure there are no surprises in there. I will be put under for that. Then she told me she will call me back on getting my ultrasound for my gallbladder scheduled. WOW! This is going by quickly. I am not sure if it is a hurry up and wait situation, or not. I hope to get surgery soon.....yet am prepared to wait. The surgical coordinator says it can take 2 1/2 months to 4 months to get a surgery date.

Either way I am concentrating on being a pillar of optimism! Wish me luck everyone, and God bless.


iheartchocolate said...

I do wish you much luck with this. What an ordeal. I wish you much support from your family and friends. I know you will be successful! Everything will go smoothly, don't worry.

elise said...

Hi CC,
Welcome to the wonderful world of EDS! I'm sorry to hear you are in pain but I am glad you finally got a diagnosis and can begin getting the support you really need. The EDS community is fabulous!
A couple of things to know. BJHS is actually the Hypermobility type of EDS and it is not benign. Sure, it is not as likely to kill you as the vascular type but pain and injury is not benign in my dictionary! If you live in the UK, most docs there still give out the BJHS diagnosis vs EDS but that is changing slowly. The primary researchers in the US are really putting out the word that BJHS and EDS are the same thing. So, visit www.ednf.org and learn all about EDS Hypermobility Type. For a small fee, you can join the message boards that are a wealth of knowledge. Search on just about any issue/word and you'll come up with an archive of past posts related to that topic.
Another concern is that your docs/surgeons should know about your diagnosis because you may respond differently to stitches and wound healing than the average person. It's only for your benefit and can't hurt anything to say something - you might be perfectly fine too. I don't have problems with stitches holding tight but others do. The surgeons might be more cautious in your case, which is a good thing. Best wishes on your surgery!
Anyway, feel free to contact me if you have any questions about EDS/BJHS.
Kind regards,

Anonymous said...

Sorry & good luck!

Horrible time to mention it, but my blog moved and changed tones:


Just wanted to let you know!