I’ve been going through all the survey answers (thank you THANK YOU to those who took the time to fill it out!) and have been learning a lot. This survey is really going to help me plan future posts for you all and I’m super excited.
I also have been so humbled by all the kind words you all left for me there. It means more than you know, particularly this week. I love hearing the topics you’d like me to write about, but one person’s answer to this made me tear up. She said she loves to read updates about my daughter.
Thank you, anonymous survey-taker for making me smile and yes, cry a little. Had you written that just the week before, I would happily reported that things are great and she is doing awesome! But unfortunately last week all that changed.
For my new readers, my daughter E, almost four, has an autoimmune disease that causes her body to attack her own joints. It’s called juvenile arthritis and you can read more about her story HERE. I hate that is its called “arthritis.” Arthritis literally means painful inflammation and stiffness in the joints. Arthritis is really a symptom and because most people associate the term arthritis with the type that happens with aging and wear and tear (osteoarthritis), people have no idea that this disease is actually an autoimmune disease. A chronic one with no cure.
E has a mild case. It affects fingers on her right hand and her right knee. But we have fantastic doctors who have worked very hard to get her disease into remission and we were on the right track. Four months of no disease activity!
Then a couple weeks ago we had a busy weekend and we got back and the kids and I were fighting a cold. Thankfully it wasn’t too bad but then the next week E was fighting me telling me she was too tired to go to school because she didn’t feel well. I am usually a toughie and make her go. But for some reason I gave in and let her stay home.
Good thing I did. An intestinal virus hit her that afternoon and lingered a few days. No fever, no other symptoms other than fatigue and grouchiness. So on Friday she was feeling well so we decided to head over to Starbucks for breakfast before heading to school.
Getting her out of the car I noticed it. Red, swollen knuckles.
I grabbed her hand. Looked again and again. I started to freak.
“Ellie, do your fingers hurt?”
“No mom! Stop touching them!”
The tears started. I held them back. I got the kids out of the car and got a better look at her hand.
“What’s shit mom?” OOps. Note-to-self: Your child CAN hear you, stupid.
“Oh I mean shoot. Your fingers are swollen we need to call daddy.”
(See her middle and pinky? Pinky had never swelled before)
So I left him a message and message with our pediatric rheumatologist who called me back shortly after. We decided to up her dose of her meds and hope it gets her back into remission.
So why did this happen? After 4 great months? It was likely the virus she was fighting that triggered what we call a “flare.” Not only that but the change in weather (fall) can also affect things. The combo of the new cold temps (the cold weather can thicken the fluids in the joints, causing more stiffness. Why do you think all the old people more to Florida?).
Unfortunately, we’ve had another change. Up until now, Esella has done pretty well with her meds. She gets a once a week shot of a chemotherapy drug called Methotrexate that helps to suppress her over active immune system. When we first started the drug she would be a little tired and sluggish for a day or two after but she adjusted and was basically symptom free.
Methotrexate is a chemo drug, so it can have the same side effects. Nausea, vomiting, fatigue. The last two shots have made Esella vomit. Once before the shot, once after. In addition all last week (we gave her her shot Friday night) she was E X H A U S T E D. Which equals difficult, crying, attitude, etc.
And of course my husband was away, right? I was in survival mode. Thank goodness my in laws took the kids for several hours on Wednesday so I could breathe.
She seems to be better this weekend. Tired? Yes. But not nearly as bad as last week. Hoping she is adjusting to her new dose and we will be out of this funk!
Life can always be worse and we know that. Most kids we know with JA have more severe cases. Esella was also diagnosed very early which unfortunately, is not the norm for this disease. The rheums were impressed that we were in to see them just 2 weeks after our first doctor visit and just 5 weeks after her symptoms started. They said it can be a year or more for kids to get a diagnosis! Which means the disease can become worse and spread to more and more joints.
The type she has puts her at higher risk for eye problems (can you believe it? JA can attack the eyes!) so we are off to the eye doc this week. And the dentist. Should make for an eventful week!
Well…it’s Sunday and I think I’ll go play with my little ones. Hope you are having a great weekend!