Lori

Nine-year-old Lori was vomiting again.  She wasn’t ill; she was in pain.  Excruciating pain.

Three hours later her doctor listened to Lori’s story, did an exam, and sent her for x-rays.  He couldn’t figure out what was wrong.  The child returned home unsure why she felt so awful and feeling discouraged that the doctor couldn’t help.

After that day she often had similar pain, usually in her hips, but learned to take medicine before it got too bad to handle.  In the past, her family had purchased tiny ibuprofen bottles and threw away half the contents when the expiration date was reached.  Now they started buying large quantities and Lori worked her way through multiple Costco-sized bottles of ibuprofen.

Reluctant to go to the doctor again, Lori tried to hide her pain from her parents.  With the help of her siblings, she succeeded for more than a year, but eventually it was too severe to keep secret.  Back to the doctor they went.  He did another exam.  He ordered lab work.  He sent her for more x-rays.  No answers.

Her doctor recommended seeing a pediatric orthopedist, but there were no appointments available for three months.  Lori was in more pain than ever.  She’d sit with hot packs on her hips to provide a little relief, but that didn’t help enough.  Her knees hurt.  Her wrists hurt.  Her neck hurt, which caused headaches so severe that it was interfering with her schoolwork.  Obviously, the family physician thought, with so many joints involved, Lori needed a rheumatologist.

The rheum offered no answers.  By the time the calendar rolled around to the orthopedist’s appointment, Lori was fed up with being questioned and poked yet getting nowhere.  Sulking in the car before the appointment, she snapped, “We might as well just go home now.  He’s not going to be able to help.  Nobody’s ever going to figure out what’s wrong.”

He proved her right.  She was furious to be drug to another doctor’s appointment only to hear, “There’s definitely something the matter, but I’m afraid I can’t help you.”

The doctor continued to explain that he believed there was something wrong, but whatever the issue was, it wasn’t his specialty.  He was surprised, as was the family physician, that the rheumatologist hadn’t identified the problem.  Maybe she was depressed.

Of course she was depressed!  She’d been in pain for at least three years, had given up all her favorite hobbies because it hurt too much to move, and despite being drug to numerous doctor’s appointments, had no answers and no pain relief.

Lori’s information was faxed to the pediatric department of a teaching hospital for a fresh set of eyes to have a look.  A few days later, that hospital phoned to schedule an appointment for Lori with a pediatric rheumatologist.  Finally.  Answers.

Kids get arthritis, too.

Lori now takes prescription medicine every day.  Routine blood draws are needed to make sure that the medicine isn’t damaging her kidneys or liver or stomach.  She has exercises from an occupational therapist and two physical therapists.  Lori has juvenile arthritis.

***

Now, years after all this started, Lori is furious to hear people say that obesity causes arthritis, therefore she must be to blame her for her illness.  She has always been skinny – eighty pounds when her symptoms first began.  She does not have osteoarthritis (wear and tear that causes cartilage to deteriorate); she has an incurable disease caused by an immune system malfunction.

80-9-14

Today is World Arthritis Day.  Post your numbers.  Facebook.  Tweet.  Blog.  If you do not have autoimmune arthritis, I encourage you to post the numbers of a friend or relative.  If you don’t know anyone IRL, be Lori’s friend.

Help spread the word that although OSTEOarthritis can be caused by obesity, autoimmune arthritis is completely different.  There are seven diseases classified as autoimmune arthritis:  rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis (AS), systemic lupus erythematosis (SLE), sjogren’s syndrome (SS), mixed/undifferentiated connective tissue diseases (MCTD/UCTD), juvenile arthritis (JA/JIA), and Still’s disease.

7 thoughts on “Lori

  1. Excellent post, Socks! Hard to believe that even after all that, the doctors still suggested that Lori’s agony might be “all in her head.” Makes me sputter, that. And like Lori, I’m furious that there are those who infer that having autoimmune arthritis is somehow our own fault. Honestly.

  2. Wren, sitting there listening to that was like an out-of-body experience. I’d heard so many stories of people being told they were depressed, delaying their autoimmune diagnosis/treatment by years, and part of me was off to the side, watching the interaction, thinking, “This can’t really be happening.”

    Cathy, I think it’s worse watching your child in pain than being in pain yourself. Knowing that she had the same thing I do, but being unable to do a thing about it, was miserable. She now says, “You can make me go to the doctor for a few more years, but once I turn 18, I’m never going to another doctor ever again!” I’m hoping that by the time she’s 18, she’ll have better sense than that ;)

    Lady in Pred, Thank you. Not doing so well. I’d appreciate your continued prayers.

    Mandy, thank you. I like your post, too. The photos are great. I hope people pop by your blog and take a look. Did you submit to the blog carnival?

  3. Warmsocks, my daughter has dealt with eczema since she was about four weeks old. As the mom, I took it very personal. It broke my heart to hear her scratching at night and see her legs red with blood in the morning. She now shows some early signs that RA may be in her future. So, I agree. It is harder watching your child in pain than yourself. Thanks so much for sharing Lori’s story. I tend to believe that our kids will most likely abandon many of the things we have taught them as they find their own belief system, but in the end, all the time and patience we gave them will come back and they will make great choices. I am sure Lori will make great choices at 18!

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