Our adventure begins….
April 13, 2009 § 8 Comments
At age four, I began my autoimmune mess. One body, one condition. Celiac disease.
By 23 I’d developed rheumatoid arthritis, a variant of chronic inflammatory demylinating polyneuropathy (CIDP), undifferentiated connective tissue disease (very lupus-like), and hashimoto’s disease (likely hashimoto’s encephalopathy). Were that not enough, I have probable autoimmune hepatitis, acid reflux, various anemias, hyper-mobility, and a whole supporting cast of symptoms.Â
Despite this I maintain, mine is a comic life, indeed.Â
you can be my superhero anyday.
Cool!
Nice work baby, I love it.
This is an awesome way to tell your story! I look forward to seeing more!
Thanks for visiting my blog 🙂 And nice to meet someone else dealing with so many illnesses at once, though I wish you didn’t have to deal with ’em… it sucks. 😦 Especially at our young ages…. ((Hugs))
Just found your site today (thru the autoimmunes diseases suck! fb link) and I appreciate it 🙂 After spending most of the day feeling semi-suicidal and crying over 1) the slowwww process of diagnoses and 2) my job’s insensitivity and 3) the fact that I feel half-dead, etc., etc…I needed some humor. Thanks again.
I’m so sorry you were feeling so low, Leslie.
We all have those days, but I guess we just have to hope that we’ll hit the doctor jackpot eventually (or in my case, lightening will strike twice, ugh!) and we’ll at least be made more comfortable.
I hope it gets better for you, I really do! And thanks for reading!
Great site and VERY original. I like it!
I can see why you listed only about 4 of your organs being normal when you commented on my blog; your life sounds like a piece on Discovery Health Channel’s Mystery Diagnosis. Has anyone been able to tie all of this together into one syndrome or condition?
I’m a RN in a Pediatric Clinic, and I’m familiar with some of the conditions you mention. Right now, we have a 15 month old baby diagnosed with CIDP (receiving IVIG treatments), as well as many patients with autoimmune diseases (we also have a Pediatric Rheumatologist in our General Peds clinic as well). Although I personally haven’t gone through an autoimmune disease, I have seen plenty of patients who have, so I at least have somewhat of an idea of what you’re talking about.
As for Prednisone, I’ve been spared the horror, despite having a transplanted kidney (the only steroids I’ve had in my entire life are 2 IV doses of Solu Medrol 12 hours apart after my transplant). 60 mg for more than a few days would really SUCK.
Good luck with everything, and do your best to be positive…
Thank you Jeff!
How great that you get to be an RN, I”m sure you’re patients are exceedingly lucky to have a nurse as versed in illness as you treating them. (Though, you know, I’d just as well hoped you didn’t have kidney disease 😉 )
It’s amazing how many people are on IVIG, given that unless you’re on it, or work in a certain subset of the medical field, you absolutely never hear about it. Well, that is until House came along. It’s like standard issue on the first 20 minutes of any episode. (Never seems to help those people though…)
Thanks for reading. I really do believe in positivity in the face of all this – as many cynical jokes as I make – so I appreicate your outlook and look forward to following your story, too!