I need my own charity...

Having a chronic illness is expensive.  I do have insurance, but they only cover so much.  Today ButYouDontLookSick.com posted a link to GiveForward.com, which is similar to Kickstarter.com, but for medical bills.

 

I've seen other people that blog about their medical issues with donation buttons on the side of their blogs and I've debated doing that as well.  My biggest issue is that I was raised not to whine about my problems to strangers (or even most family) or to ask for money.  I have a hard enough time letting my friends pay for my lunch, much less asking strangers to donate for my medical needs.

 

On the other hand, the list of surgeries/procedures/tests/devices I need is getting longer and the things I've been pushing off are getting to the point where I can't push them off much longer.

 

Right now I need:

 

Ligament repair (right knee), new braces, MRI to confirm CIPD or Chiari Malformation then surgery to fix it if possible, two rotator cuff repairs, two ankle fusions or ligament reconstruction, ligament repair in my right thumb, gum reconstruction, spinal fusion or spinal cord stimulator, surgical mesh replacement & they need to clean out the arthritis/cartilage tears in my hip & maybe tighten the joint.

 

I'm also having major issues with collar bones, ribs & my sternum dislocating.  Yes, this can happen and it can be quite painful.  I don't know what they can do to fix this, maybe fusion? 

 

The hardest one for me to face is I may need to buy a wheelchair much sooner than later.  I have to have an ultra light model due to the Ehlers Danlos. 

 

So, is it tacky for someone with an incurable chronic illness to set up a donation site for themselves?  Would you do this?

Intro

A few months ago, I was venting to a fellow EDSer and she suggested I start a blog. 

 

For my first post, I thought I'd post a few things about myself.  I'll start with the bad first:

 

1 - I have Ehlers Danlos Syndrome (Hypermobility type III) aka EDS.  After several years of fighting with doctors, I got a diagnosis last year.  EDS is a genetic disorder that affects the connective tissue.  There are several different types.  Almost all of my joints are loose and this causes them to wear down faster than they would if my connective tissue wasn't defective.  There's no cure & most doctors don't even know what it is.  All they can do is feed me pain meds & surgically repair things.  I'm in constant pain & use a cane or wheelchair to get around on bad days. 

 

2 - I had 3, bad major events happen within a few months of each other.  My EDS diagnosis (dx), my father dying & being laid off from my job.  I suffered from depression before, but now it's severe.  My doctors are trying to put me back on meds for it and put me into counselling.  I had bad experiences with both in the past & I can't afford to go to weekly psych sessions.  My insurance doesn't cover much and EDS is expensive enough as it is.  I'm doing what I can with what I have.

 

OK, now the light stuff...

 

3 - I'm a huge nerd.  I'm into Star Wars, comic books, bad horror & sci-fi movies.  

 

4 - I'm a very proud, but displaced Pittsburgh girl (my hair is dyed black & gold).  I go home regularly for Pirates or Penguins games.  I used to go home every weekend, but driving is now quite painful, so I've had to cut back.

 

5 - I have a weakness for vintage hats.  I got out of it for a little while because my hair was short and they didn't look right. 

 

6 - My favorite vintage periods are the 40's and some of the early 50's.  A large chunk of my vintage collection is from my family.     

 

7 - I've been a fan of Marilyn Monroe since elementary school.  It's kind of cliche.  Almost everyone is a Monroe fan.   

 

That's enough for now.  I have a tendency to ramble and I'm trying not to do that.