Wednesday, October 28, 2009

Epidermolysis Bullosa

is the diagnosis today. (I can't get that stupid html link thing to work!)

We spent most of the day in the hospital yesterday after waking up fevering and with a red swollen foot.

A chunk of skin missing from a plug biopsy, a shot of Kenelog, and several medications later, I am back in the hotel room where the internet is my best friend and my worst enemy.

I can facebook and laugh with friends, family and well wishers, or I can spend the day looking at horror stories caused by the awful auto-immune disease that's I've just been diagnosed with that has no cure.

So far its been about 50-50...

For those of you who need a painted picture, three weeks ago, I was fine, and had one small blister on mt right foot. Day after day I was progressively worse and eventually (today) I am in a wheelchair, unable to put clothes on, shower, or fix my hair by myself. I can't walk, or grasp things, but I DO still have use of a few fingers on my right hand. (which explains my one fingered typing of the blog!)

I was prescribed too many different medications, and I think I might have had a reaction to one of them, which would explain a type of epidermolysis bullosa called, Stevens-Johnson Syndrome. One day I'm fine, the next day, I'm completely dependent, in a wheelchair, and unable to fasten my own bra...its that bad.

My outlook remains good. I think if I sit about and sulk, I'll turn into a mean, old grump! Don't want that, so I'll happy and try to convince myself that my entire hand won't blister and burn!!! At least I can still type though eh?!


Rebecca said...

OMG I have just found your blog. What a shock for you (that must be the understatement of the year).

I have read a lot of your blog and thoroughly enjoyed it, such different lives we all lead.

Hope things sort themselves out as quickly as they can, stay away from google - it's a monster.

Take Care,

bec (Sydney, Australia)

theresa4sixsuit said...

Do you think they finally have the right diagnosis? Some of those pictures on the link you listed are pretty scary and look a lot worse than you have (although what you have does look pretty scary too) Did they give you something for it and a plan to help you heal?

My gosh, woman, do I have to come up there and kick some DR tooshie?

Wishing you the best and a speedy, pain free recovery.

SimplySweeter said...

So sorry to hear about your hospital stay. I hope you're up and around soon!!!

Urban Milkmaid said...

Sweet Jebus! That Stevens-Johnson deal is sometimes fatal! You are so lucky and so blessed that you didn't just croak over! OHHHHH MAAAANNN!

Glad they found out what you have!

Anonymous said...

I must aplaud you for not having defeatism which is why you will be fine no matter what life throws at you. Stay strong and positive, you're an inspiration to many.

Cate said...

Yikes! I was worried that might be it! I am so glad your outlook is good. I will be checking back more often to see how you are doing. Now I know what can happen if I neglect the blog world... I joke.
Heal well!

Rachel said...

I've been reading blogs for about 2 years now but have never posted a comment before. Found yours about a month ago and you are amazing!

I am deeply touched and humbled by your positive outlook on all of's really astounding. You've inspired me to be more thankful for what I have! I will keep you in my prayers. I know God will watch over you.

Get well soon!

Anonymous said...

I feel so bad that you have this condition. I have only been following you blog for a couple of months but always found you witty, cool, and down-to-earth. I think that if you lived closer to Michigan, we would really be friends. I wish you a speedy recovery!

Mariha (Ann Arbor)

Gina said...

EB!!! Really? I know 3 people with EB and they have had it since infancy. I didn't realize that you could get it later in life.

I will pray for you. You are awesome to have such a positive attitude.

Anonymous said...

I recently found your blog and have been a lurker. There are three other blogs I follow where the kids have EB. I think it's a different type, but they may still have tips that could help you, and if nothing else, maybe an extended support group and a source of information.
And by the way, your sewing is awesome! SO cute!!!
Laurie (Dallas, TX)

Sally said...

Someone posted something on Facebook today that made me think of you and so I thought I'd post here. Here's a link: to a network that might be a good resource for you.

Dear Friend/Family: You are urged

to act now! A Member of Congress has as...ked us to pass on this very important message to you. We only have three days to act and cannot delay. On behalf of all people living with EB please call, email, or fax your local Senators and Representatives asking them to sign on to the EB appropriations requesting $15 million in funding for EB Research. For contact information for your local Senators and Representative(s), please visit: can also email or fax the following message to your Senators and Representatives:On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act. A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

Thank You!
The EB Friends Team
Take care,