Marty forgot his meds this morning and didn’t realize it until it was time to take his evening pills. He was thrilled that he didn’t even miss them.
This is HUGE!
Personally, I wanted to get on the phone and call everyone I know, but most people wouldn’t understand what a big deal this is. They don’t realize the loss and grief we have endured, the thousands of pills Marty has swallowed, the hundreds of needle sticks he has faced, the dozens of doctor appointments he has had, the sleepless nights, the pharmacy trips, the ER visits, the painful morning stiffness…I could go on, but you either know what I’m talking about or you don’t.
I know it’s too soon to think that he’s anywhere close to remission, even medicated. But even one day without pain and without medicine is a major milestone. I couldn’t be more thrilled.
I’m going to go have some celebratory ice cream. With chocolate sauce for good measure. Care to join me?
I am surprised at the amount of medical knowledge I have gained in the last 3 years. Besides knowing how to give injections, being familiar with needle guages, being able to explain the difference between autoimmune arthritis and osteoarthritis, having thousands of dollars of biologic medicines in my refrigerator, and passing through airports with prefilled syringes, I have learned many, many things about autoimmune illnesses.
I have learned words like tenosynovitis, pericardial effusion, macrophage activation, and gastroparesis. I know the difference between non-steroidal anti-inflammatory drugs, disease-modifying anti-rheumatic drugs, and bioligic medications. I have listened to symptoms and speculated (sometimes correctly) about whether it was an autoimmune illness. I have urged friends to seek a second medical opinion or to be more persistent with their doctors. I have a wheelchair and two sizes of crutches in my garage, and a 4-foot tall bookshelf literally full of medical supplies.
I can name at least 15 symptoms of 15 different autoimmune illnesses and 15 different medicines to treat them off the top of my head, probably more if I tried. I can tell you the difference between uveitis and iritis, oglioarticular and polyarticular juvenile arthritis, and psoriatic arthritis and still’s disease.
I have 3 pharmacies and 2 doctors on my phone favorites list, and probably a dozen more in my contact list. Half my friends on my regular facebook page are involved in the RA/JA community in some way. A dozen medical professionals recognize me and/or know me by name and remember most of Marty’s history without looking it up. I know the ins and outs of 3 different hospitals, and know the closest children’s ER almost as well as my own home. Marty and I know the cafeteria menu pattern at MasonicDocsRUs and can guide newcomers just about anywhere they need to go.
No, I’m not a medical student, but do I sound like a regular parent?
You may have heard that autoimmune arthritis (as opposed to osteoarthritis) has a genetic component. In Marty’s case, his dad and I both had parents with rheumatoid arthritis (RA), so we both could be carriers. As I meet more and more people with autoimmune (AI) illnesses, I see more and more family members affected: parent/child combinations with Lupus/juvenile arthritis, RA/uveitis, or psoriatic arthritis/Anklosing Spondylitis. I know one family that has three generations affected with AI illnesses, and a mom and daughter both on the same biologic medication. This can be a blessing in disguise.
One benefit is that parents are more aware of their kids’ aches and pains, and more likely to know whether they are caused by an injury or by arthritis. If Marty’s first symptoms had been swelling, rather than unrelenting fever, he might have become seriously ill before we got a diagnosis. We might have not sought medical treatment for his chest pain until the pericardial effusion reached a critical stage. If he had been one instead of eleven, he wouldn’t have been able to tell me how bad he felt, or that he had migrating joint pain in the emergency room on Christmas Eve. In that sense, I was saved from my ignorance by the simple fact that his illness presented differently than most kids. Also, had I been familiar with AI illnesses, I might have been more quick to believe Marty when he told me he was hurting 30 minutes after he played with the dog. Now I know better.
There are plenty of drawbacks, however. First is the greater cost of having two or more people in the house with a chronic illness. One is tough enough on a budget, I can’t imagine two. Also in our family when Marty is hurting, Bella and I pick up the slack. In return, he helps out more when he is better. That’s not something you can do if there are two family members down at the same time. In addition, any time Bella has a symptom that remotely resembles one of Marty’s, my mind jumps to arthritis.
Does your family have two or members affected? Has it been good or bad, or a mixed bag?
Posted in Uncategorized
Tagged chest pain, chores, chronic illness, early diagnosis, family, financial burden, hope, hospital, immune system disorder, osteoarthritis, siblings
I decided it’s time to join the millions on Facebook to help raise awareness of juvenile arthritis. Yes, technically I’ve been there for a long time, as a regular mom with a not-so-regular life, but now Anna Banana is officially here. Except Facebook didn’t believe my last name is Banana, so I’m Anna B Anana. 😉
Anyway, feel free to look me up at https://www.facebook.com/anna.banana.54966834 and subscribe or add me as a friend, or go to https://www.facebook.com/JuvenileArthritisMom and “like” me. Lets spread the word about our 300,000 American kids (and millions worldwide) that suffer every day with this horrible illness!
I recently asked my group of Juvenile Arthritis moms what they would like the rest of the world to know. Here are a few replies:
“Don’t give my child any meds if they’re at your house. That should go without saying…” Apparently it doesn’t.
“That your child can NOT catch it from my child! That my child may not be able to run and keep up with your child but she desperately wants to. Teach your child to slow down a little and meet in the middle!”
“This one is my favorite: ‘Oh, don’t worrrrry.. I’m sure she’ll just grow out of it.’ I can’t stand it when well meaning people tell me THAT.” My mom’s doctor even told her that about Marty. Gah
“So many, many things. My top one is that it’s not the same as osteoarthritis.”
“don’t second guess my decisions unless you’ve heard our whole story and PAID ATTENTION like you would if it were your child knocking on deaths door. I’m not being a drama queen or a bummer. It’s my life and I just shared a bit.”
“Germs DO matter. Stay home if you’re sick. ” Our kids have immune system problems, and don’t need your cold.
“Simple one … just because she doesn’t ‘look’ sick doesn’t mean she isn’t!! Believe me when I say she DOES have an issue.” I get this one all the time.
Anything you would like to add?
I ran across this article today:
Juvenile Arthritis Growing In The U.S.
Go ahead, take a look. I’ll wait.
The article doesn’t say who determined that the numbers are growing, but it doesn’t surprise me. I imagine it’s similar to the “growth” of ADHD in recent decades. It’s not necessarily that more kids have ADHD or JA, but more people (and doctors) are aware of both issues and are familiar with the symptoms of each.
This is good news. No, really. Let me explain. More people being aware of an illness does two things. It helps kids get diagnosed at a younger age, which means medication and other treatments reduce their suffering, whether mental or physical. It also means more people are doing things. Things like fighting for awareness, raising funds for research and treatment, asking their doctors if their child could have it, lobbying congress for assistance, and supporting each other in the daily struggle.
I think the “growth” is misleading. I believe that the number of diagnosed cases is growing, yes. But I think that has less to do with children being affected and more to do with kids no longer going undiagnosed. And this is definitely good.
I just realized I never updated you on Bella’s visit with the rheumatologist. Last month when Marty had his check up, they also looked at Bella to see if JA was causing her chronic ankle pain.
The doctor examined her quite thoroughly and said there was no evidence of arthritis anywhere, at least that can be observed without further testing, like X-rays or an MRI. The doctor didn’t say that last part, but this isn’t my first rodeo. I know there can be joint damage without apparent symptoms on the outside.
Her diagnosis is hypermobility. Meaning her ligaments are loosey goosey and her joints bend more than most people’s. When I was a kid, my brother and I said we were double jointed (yes it’s hereditary). Apparently we weren’t quite as loose as Bella because we never had issues with our joints. But I can still do that weird thing with my fingers where you only bend the last knuckle.
One of the long term consequences of hypermobility is degenerative osteoarthritis due to loss of cartilage. So she could have OA, which is a different animal than Marty’s autoimmune JA.
Her lab work showed continued elevation of an inflammation marker in her blood, so they want to repeat the labs this month. That marker shot through the roof when she was in the hospital in April, so they want to make sure it’s still dropping. What they didn’t listen to was when I told them that marker has been high for a year and a half.
Bella is frustrated because even though she is doing the strengthening exercises, they don’t help, and the only thing she feels she can do is take Naproxen (Alleve) to treat the symptoms. I’m concerned about the long term effects on her stomach if she continues to take a prescription strength dose every day. I had her start taking Prilosec to protect her stomach. Marty already takes Nexium to protect his stomach from the Naproxen he has taken for over three years.
It will be interesting to see what her lab work looks like four months after her hospital stay. I don’t think the inflammation marker will drop as much as the doctors expect.