This Post Will Contain Words That Spell Check Hates
In a rare moment of altruism and because he happened to come across a set of *ahem* incriminating photos of *ahem* me that he *ahem* threatened to share with you if I didn’t, I sweetly offered the use of my blog to my friend Kevin, even though I am a control freak of the highest order.
Normally, I don’t give it up for PSA’s and what-not, although you’d be surprised that I do get people emailing me to remind you, My Gentle Reader’s about about important water safety tips and stuff. Those go immediately in the trash, because, obviously, but, you know, pictures and blackmail, and shit, if I were Kevin, I’d want as much help as I could get too. I know that you’d help me out if the roles were reversed. EVEN WITHOUT THE PICTURES OF ME AND THE HORSE.
It’s the right thing to do.
Kevin of Always Home and Uncool has asked me, The Coolest Person he knows, the only one who would return his emails, to post this as part of his effort to raise awareness in the blog-o-sphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago.
The day also happens to be his wife’s birthday.
*
Our pediatrician admitted it early on.
The rash on our 2-year-old daughter’s cheeks, joints and legs was something he’d never seen before.
The next doctor wouldn’t admit to not knowing.
He rattled off the names of several skins conditions — none of them seemingly worth his time or bedside manner — then quickly prescribed antibiotics and showed us the door.
The third doctor admitted she didn’t know much.
The biopsy of the chunk of skin she had removed from our daughter’s knee showed signs of an “allergic reaction” even though we had ruled out every allergy source — obvious and otherwise — that we could.
The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.
She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:
The rash across her face and temples resembling the silhouette of a butterfly.
The purple-brown spots and smears, called heliotrope, on her eyelids.
The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.
The onset of crippling muscle weakness in her legs and upper body.
She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.
This was her gift — a diagnosis for her little girl.
That was seven years ago — Oct. 2, 2002 — the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.
Our daughter’s first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn’t tip over, as medicine or nourishment dripped from a bag into her body.
Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.
What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don’t know.
I do know that the fourth doctor, the one who brought in others to see our daughter’s condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.
That, too, is my purpose today.
It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.
To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.
To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.
My heart aches with you, Kevin, for your daughter. Autoimmune diseases are devastating. I have been diagnosed with one this past month with something I have been dealing with for years, but the doctorS(plural!) don’t know which one…you’d think every doctor would know something about it if they have been to med school, but the doctors I have seen just seem perplexed and can’t pinpoint what it is. I hope you all the best and thank you for educating people.
And for this there is Spell Check Anywhere (SpellCheckAnywhere.Com). It adds spell check to all programs, and comes with an optional grammar check.
Jesus isn’t the only one who loves the little children. You are The Awesome, Aunt Becky. And you have some bitchin friends.
I’m so happy for them that they found someone who recognized it and I think it’s absolutely wonderful that they are now doing everything they can to raise awareness. Even if it means coercing other bloggers. (‘Cause I’m sure he had to reeeeeally twist your arm, seeing as how you so hate to help anyone in need.) 😉
That is a devastating diagnosis, and a story I’ve heard all too often, but with adults. I have an autoimmune disease myself, and I was one of the lucky ones — 19 years ago when I was diagnosed, they got it right the first time. Well, not exactly, but very close, close enough to put me on the right meds. I’ve read that the average is seven years to get an accurate diagnosis for an autoimmune disease.
Being a “professional patient,” I’ve seen many, many times when doctors choose the most familiar diagnosis for something and refuse to change their minds when the evidence contradicts what they’re thinking. It’s true, they don’t like to say, “I don’t know,” or leave you without a diagnosis. It’s so frustrating.
I’m so glad your daughter is able to live a relatiively normal life, despite the meds and the other issues one faces with this kind of illness. I’m glad you and your wife are working so hard to spread the word. Best wishes to you all, and thanks, Becky.
A worthy cause if I’ve ever seen one.
So happy that they did find a dr. that was able to identify the disease and so happy that she is now a happy 9 year old.
My black heart grew three sizes today. Well done Aunt Becky.
So glad your daughter is doing better, Kevin. It’s scary how many doctors you have to go through sometimes. Happy birthday, Rhonda!!
Oh, and Kevin, please forward me those naughty Becky photos ASAP 😉
This brought tears to my eyes. Thanks for the PSA.
Definitely a worthy reason to turn over your blog today. You are doing a great thing educating parents and that 4th doctor did a great thing exposing other doctors to it so they would recognize symptoms later.
all too often we treat doctors like they are all-wise medicine men who have all the answers. thank goodness you perservered and found a doctor who realized that learning to save lives is a never ending journey.
You are Teh Awesome for providing a platform of information.
Anytime awareness of a disease, an illness, can be offered to the populace, it might be one less person who suffers longer for being in the dark.
I wish Kevin, Rhonda and Megan all the best in their lives.
And the doctors? My view is they work for me, if I don’t like how they treat me, or my family, if I feel their performance is lacking, I move on. Life is too short to trust the well being of family to less than the best medical care I can find. And I have fired more than one for their piss poor performance.
To those doctors who don’t go that one extra step for the patients in their care? They are douchebags of the highest order.
Wonderful post. Thank you for sharing your little girl’s struggles and educating about this disease. I, too, know my way around a hospital, having spent more than a fair share of time in neurosurgery offices. Sickness is a fact of life BUT … very ill children are just … well, unfair does even begin to cover it. For the kids. For the parents. I am glad to read that Megan is doing so well this days. And happy birthday to your wife, it sounds like your family has much to celebrate this year.
That’s terrible. My sister has an “undifferentiated autoimmune disease” similar to lupus. They’ve been trying to figure it out for years. What a great thing Kevin’s doing getting knowledge out there.
I echo pretty much all of the sentiments above – a worthy cause. I have a disease called Hailey-Hailey disease that was unidentifiable (it’s genetic, however, my mother did not believe that she had it, therefor eliminating my chance of having it). When we finally figured out what it was (turns out my mother did have it – she just was phenomenally lucky in not exhibiting any symptoms of it), my doctor was like “I read about that in a book during med-school…once.”
OY….
I’m so happy that you were able to figure out what was ailing your daughter. And thankyou Aunt Becky, for allowing your friend to post that on here. (I’m sure he had to absolutely break your arm in order for you to allow it…Grinch)
I’m all PMSy, so Hallmark moments set me off. I’m at my desk crying, thankful for the happy ending.
This is why I love you, Becky.
To Kevin and Rhonda – I’m so happy your daughter is doing well. Thank you for raising awareness and helping others avoid your traumatic experience. Best wishes to all of you.
Search these….Neurofibromatosis Type 1, Psuedoarthrosis of the Tibia, Plexiform Neurofibroma, we pray nothing else will occur, but know many more things can go wrong.My two year old son has been diagnosed with all three.
I pray your daughter will stay on the road to recovery and they find a cure.
thank you for posting this.
What an inspiring story! You are your child’s advocate, and you didn’t give up until there was an answer. What incredible parents! I hope your daughter continues on her path of recovery!
Thank you for posting. There are so many lessons to be learned here.
Yes, it’s true. I have photos NOT of Becks and David Letterman but her and Larry “Bud” Melman. Who knew he was so huuuge?
Thanks for letting my use you space today. You’re good folk.
K
Hey Kevin
I’m not so hot on the whole technology thing but I think I manged to RT on Twitter and I’ll try and find a way to link you to my blog!!!! Thank goodness your daughter is thriving…..here’s to raising awareness!!!
Thank you for sharing your family’s story and educating us all. My best to you and your family.
Happy Birthday to Rhonda.
Check my blog—-I nominated you for an award!
😀
I have a problem similiar to Cat’s sister. I have a condition that may or may not be Lupus. Undifferentiated usually just means that don’t know.
I’m so glad this little girl got some real help and that she has parents that are advocates for her and didn’t stop looking for an answer with doc number one and two.
I actually thought I was going crazy until I found a doctor to help me.
Missed you Aunt Becky but this was definitely worth turning your blog over for.
Wow, this post brought tears to my eyes! What a worthy PSA. Thank you Aunt Becky and Kevin.
I’m so glad for a happy ending here. It makes my heart happy.
It is so important to be your child’s advocate and to not give up. It’s wonderful that you did this and she is here with you today.
Very inspiring. Best wishes to you and your family. Thank you for bringing this to our attention.
Thank God for a happy ending. In a week of complete and utter chaos, it is nice to see one family have a happy ending.
Wow. I’m glad a dr. finally diagnosed it correctly. Thank you for spreading the word. I’d never heard of this before, but now I have. Wishing you all and your family the absolute best. And Aunt Becky? Thanks for allowing this post through 🙂 ~Susan
Aunt Becky–I’m sure it’s hard to sort through all the requests to borrow your blog as a platform for worthy causes. But good choice. The health of a child, especially when it was this hard to diagnose, is a most worth cause.
Kevin, I’m so sorry for what your family has gone through and am so grateful that your family is doing so well today. As an aside, it can be frustrating to be a patient in a teaching hospital, feeling like there are always too many people in the room, gawking at you. Thank you for recognizing the doctor’s purpose in calling the students in–trying to ensure that they will recognize this if they ever see it again. As a teenager, I was diagnosed with a very rare joint disorder (but easily managed–more frustrating than life-threatening), and it was such a relief when we met the doctor who told us “I just read about this the other day!” Well-informed doctors and patients can make all the difference in the world.
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