Verona Park is home to all sorts of events throughout the year. On any given weekend morning, cars are parked along Lakeside Avenue, Bloomfield Avenue, Park Avenue and of course in every available spot in the lots. On many weekend days, I find this to be a small nuisance. Roads seem crowded, people are crossing the street in places where they shouldn’t be and all of this activity feels as though it contributes to me running later than I already am.
But this Sunday, it’s different. This Sunday, I will be one of the people in the park walking for a cause.
That cause is Juvenile Arthritis and my 13-year-old daughter has it.
Nope, teenagers aren’t supposed to have arthritis, but arthritis effects over 300,000 kids in the United States. It is definitely not a disease just for older people.
When my daughter complained about her hands hurting following a lacrosse tournament in November, I thought it was just the cold air and hours of playing. As the pain went away IÂ expected that resting her hands and wrists would take care of most of her symptoms. And they did, for a little while.
Then small bumps started appearing on the backs of her hands and on her palms. Not bumps like a skin irritation, but bumps that seemed more like fluid deposits. They were moderately painful, and primarily annoying. When the pain returned, a trip to the orthopedist revealed an early diagnosis of ganglion cysts. Nothing to worry about, nothing life threatening, just something we had a few ways to get rid of. And if we were interested, an MRI was a good idea to rule out any other potential possible issues.
I was in no rush to have the MRI. Cysts seemed reasonable to me. My mistake.
The MRI required a visit with a hand specialist and revealed fluid evenly surrounding every tendon in my daughter’s fingers from tip to wrist. It was the first time we heard tendonitis or maybe arthritis. A visit to a pediatric rheumatologist was next.
Having learned from past experience with a concussion, I stopped just blindly following the doctor referral network. A phone call to my pediatrician revealed agreement that a rheumatologist was next and he had a great one. So did my best friend from childhood–a doctor with whom she works closely at Overlook Hospital.
I had six weeks to kill until we actually had a visit. In the meantime, the Internet was both our friend and our enemy. There was a lot of information about arthritis and tendonitis, but none of it was so specific to our case that it seemed reasonable. Lyme disease can look like arthritis and go untreated for a very long time–had she been bitten by a tick and we didn’t know? What is Rheumatoid or not? What do positive ANA markers mean? An autoimmune disease could be Lupus instead of arthritis. For a long time there were more questions than answers and we had to exercise patience.
Here is where a few years of parenting and a few mistakes became the best thing ever. We were patient. We saw two rheumatologists. My concern–aside from being smart–was whether the doctor would understand where I’m coming from as a mother. My husband’s concern–would the long term effects of medication be worse than the disease itself? My daughter’s concern–how can she just feel better and regain full movement in her fingers, hands and wrists? It will be a long time until we can see the full benefits of the medication, and even longer before we are aware of any major side effects. What we do know now is that the medications available are much better than they were 10 to 15 years ago and we think we caught this early.
My daughter and I saw both doctors together. We asked the same questions of each and made the decision of who to see together. Four months later, we still agree we made the best decision and yes, aside from being very smart, our doctor understands both my daughter’s perspective and mine.
Where are we now? We’re getting ready to walk in Verona Park to raise awareness and build support. We’re learning how to be active while the body strengthens. We’re thankful for the opportunity to work with an amazing doctor and have what truly is endless support from family and friends.
Arthritis effects kids too but walking in a park is a great way to help find a cure. If you’re around on Sunday morning and wondering what all the activity as the park is about, come on in and join us. Registration opens at 8:30 a.m., the walk starts at 10 a.m. and it’s free.
