Maddie has had a 504 in place since 2011. Her teachers have always been very accommodating until now, middle school, 6th grade P.E. teacher. What does this teacher not understand about my request that Maddie not participate in the daily mile run, EVER? Running is hard on the joints, we all know that. I understand that some with arthritis are able to run, but I'm trying to preserve her 12-year-old joints for a lifetime of use. Is dancing ballet 12 hours a week not enough physical activity to keep her physically fit, totally in shape, toned, and muscular? Must we subject her joints to daily pounding on cement when she dances for hours a week on a spring-supported floor instead? I am working on filling out an Independent Study contract for P.E. Because she dances more than 10 hours a week she is eligible. I hope they accept her application so I can quit doing battle with the P.E. teacher. Every time I check Maddie's grades online, it shows Maddie having a B or C in P.E. due to lack of running. Seriously? Must I email the teacher this often to remind her of the 504 accommodations?
June 12, 2014
We did the San Diego Walk to Cure Arthritis last week. It was a lot of fun, great food, music, prizes, and very informative booths. There were a few hundred people there but I think it needs to be bigger. In a city the size of San Diego and with the millions of arthritis sufferers, we should have had better attendance. I've heard the annual December Jingle Bell Run/Walk is huge. We'll give that a try next.
I managed the 1-mile walk. Maddie ran the 3-mile and came in 2nd place overall, then suffered the foot/knee pain afterwards. It was worth it she says.
January 31, 2014
Sometimes we have those days where we ache so badly that nothing sounds good except to curl up on the sofa next to the fireplace and put on a good movie. Today is one of those days for me and I am so grateful that despite my crazy busy life, my schedule is remarkably clear for today only. So I will ignore the doctor's voice in my head telling me to get up, move around, stretch, and instead will heed my arthritis body that is longing for comfort and warmth.
After a long period of a very dry and fairly warm winter, it is raining outside. I felt it coming on the past two days, the aches returning. And last night as the rain began to pour my joints felt it through extreme pain. Why does the rain affect me so?
January 04, 2014
I did my annual "take prednizone in December to make it through the season" trick. It worked yet again. Despite the weather changes, cold and rainy, I continued to teach full-time and get Christmas ready for my family of 6, plus buy/make and ship gifts to other relatives and friends. I took the full dose for 2 weeks and the third week I cut the pills in half to ween off thinking that would help. Right! My first 2 days off the prednizone I was okay and then spent 4 days in bed. Maybe I have the flu or maybe it's just my body reacting to the lack of the good stuff. Each year I have the same dilemma, do I take the medicine to feel normal for 3 weeks knowing I'll be in the dumps for a few days after or just continue in pain as I attempt to make the Christmas season nice for my family? Each year I conclude that whatever side effects reveal themselves at the end, I at least got to enjoy 3 weeks of heavenly bliss (for me that means an almost pain-free life).
Maddie was also on prednizone, starting hers in mid-November. She started flairing and as usual we had her on Naproxen right away. But then the sausage toe grew, and kept growing, and it was Nutcracker season. Maddie had been at the dance studio every day and couldn't let sausage toes get in the way. So the doctor said she needed the prednizone. She, like I, was fine while on it and then at the end of the ween-off she went into a little depression. Imagine a depressed 11-year-old. It was very real but thank heavens it only lasted a few days. This may feel like the miracle drug while we're taking it but oh my, what chaos it causes when we come off.
November 14, 2013
Nicholas is fine. His tests were perfect, HLA-B27 negative, no arthritis, just growing pains. Whew!
Maddie is having a right side flair...right knee, right toes, right wrist. So strange. We had her on naproxen for 2 weeks and it wasn't working so the doctor put her on prednizone a few days ago. She's already moving with grace and ease. She has been a good sport through it all. I know her feet must have been killing her because her toes look so swollen and painful but Maddie continuing to dance without missing a single Nutcracker rehearsal. She has been fighting for the right to dance.
October 14, 2013
I took my son, Nicholas, to the pediatrician for tests. The pain that has been bothering him for months in his knees, heels, and lower back is now in his shoulders and hips. The lab took 7 vials of blood for tests, including the HLA-B27 antigen test of which Maddie and I are both positive. It's been 2 weeks and the doctor hasn't called me yet with the results. I tried to access his records online through our insurance company's fabulous website but apparently in the state of California it is against the law for a healthcare provider to allow parents to access medical records for a 12-17 year-old. Who knew that teenagers had special privacy rights? Never mind that I'm the one driving him to the doctor, paying the health insurance premiums, and buying his medicine. The only way I can get his test results is from his pediatrician.
Maddie went in last week for her routine rheumatology appointment. All is well with her so I used our visit to ask the pediatric rheumatologist all sorts of questions relating to Nicholas. He told me to start giving my son Aleve, 2 pills, twice a day and if he notices improvement within 2-3 weeks then it is quite possibly arthritis. So far no improvement, but it's only been a week. I'm secretly hoping there isn't improvement so we can look to other causes for the pain, like growing pains. Nicholas has grown 6 inches in a year. The pediatrician said this very well could be the cause of his pain but due to family history we have got to rule out autoimmune disease.
September 24, 2013
I have been dreading writing this post because it makes my fear all the more real. My 14-year-old son has been suffering from knee pain, lower back pain, and pain in his heels. This coming from the kid who hasn't taken a sick-day from school since the day he stepped foot in kindergarten. He started high school last month, is in marching band, and on the J.V. Cross Country team. He has grown a lot the past year and my secret hope is that these are just growing pains, but my brain is saying differently. Is it normal for a teenage boy who has been running his whole life to suddenly have knee pain while running despite wearing top-of-the-line Nike running shoes? Is it normal for a teenage boy after sitting for an hour at the computer to limp when he gets up because of stiffness? Is it normal for a teenager to complain of back pain after standing for a couple of hours for a marching band rehearsal? Is it normal to walk around like the Rice Krispy kid, popping and cracking with each step? I'm inclined to say no. It is common for AS (Anklosing Spondylitis) to show up in boys during their teenage years and this is my greatest fear. My sister has AS. I have arthritis in my back along with all my other joints so the Rheumatologist is reluctant to call it PsA, thinking it may be AS or perhaps a combination of the two. I call it PsA with Spondylitis. Maddie's latest diagnosis is PsA, although she's never had any psoriasis. Anyway, these are all Spondyloarthropathies, close cousins if you will, sharing the same HLA-B27 antigen. It's time to get my son tested, and probably my other two kids as well.
I will call today to set up an appointment.