It's rare for me to feel this rare...

I like my steak rare. I like to admire rare artifacts. Rare books are a treasure! And you all know how much I LOVE the rare bargain find!!!

I've now moved into a new state of rare and I'm kind of struggling with it. Three weeks ago my doctor (the good one) confirmed my self-diagnosis of Dercum's Disease (also known as Adiposis Dolorosa). Dercum's is defined by the WHO as a rare disease. Wow! How cool is that? The cause is unknown, there is no cure and there is very little research being done. (Mostly anecdotal which is a single observation according to the doc...) It is a progressive disease characterized by painful lipomas (lumps of fatty tissue) in the body. It is thought to cause weight gain - sometimes quickly and for no reason - and it makes it difficult to lose weight. One of the most fascinating aspects of it - if I look at myself in the 3rd person - is the changes it causes to your body. My thighs have swelled up and gone back down leaving more lumps and folds (elephant legs I call em). My calves and arms now seem to have a layer of squishy, rubbery fat on top.

I've started calling myself a shapeshifter. I told a dear friend that at lunch and then looked for a definition to be sure I was correct. I found one that is so perfect, it's funny.
"There are many different styles of shapeshifting to be seen. One is the literal bodily alteration where the body physically changes. Depending on what the subject is changing into, the different parts of the body will shift, stretch, compress, and expand. This type of shapeshifting is often against the subject's will and can be a slow and painful process; articles of clothing are usually lost or destroyed, as in the case of the werewolf."

Huh, what???? The werewolf? Clothing being destroyed???? The rest of the description fits so perfectly with what is happening that I'm wondering if I need to start keeping an eye on my clothing and watching for extra hair growth! =:0

As I said I have been struggling big time with this. Mainly because I realized that the treatment I have received at the hands of 3 doctors who based their judgement on my appearance was even more unwarranted. It's going to take a while to work through this one. But noone else should have to go through that for this reason so I want to make you all aware of it. Education is really, really important in this. I am now a face of Dercum's so please help me spread the word.

Other than the shapeshifting story and being cool, there really hasn't been much fun with this. I do thank God for the support groups I have found online.

Sorry to be a downer this time.

Take care!