April 07, 2015

I was organizing some paperwork yesterday an came across an old pocket calendar from 2006-2007. How did that get in the mix? And why was I saving it? I thumbed through the pages, month by month, and looked at the tasks I had back then, the appointments. The schedule looked so simple when my four kids were so little, the youngest an infant. Then a particular appointment caught my eye, in September 2007, a visit to a rheumatologist. I remember it well. I had been experiencing pain in one hand when I played the piano, shooting pains coming from my pinky finger. Eventually the other fingers started experiencing pain as well. I mentioned it at a routine doctors appointment and he wrote a referral to see this rheumatologist. Getting that referral was frightening; it meant my doctor thought it was something worth sending me to a specialist for a second opinion. I remember that rheumatologist examining my hand and saying that it can't be RA because both hands would be involved and I would have had a positive rheumatoid factor test. So he dismissed me and said it was from overuse. He told me to wear a wrist brace daily until the pain stopped. The brace never did help my pain. After a while I came to ignore the pain, although sometimes it would stop me in my tracks. Four months after that appointment, Maddie was diagnosed with Juvenile Arthritis. By then I was focused on her and completely forgot about any pain I had until the summer of 2010, when the pain became so severe that I was back in for another rheumatologist appointment (different insurance, new rheumatologist). This time I had Maddie's diagnosis to back me up so I was taken seriously, in time. 

So why am I telling this story about a rheumatology visit so long ago? To make the point that we need to do our own research. This rheumatologist did not do what he should have done to make a correct diagnosis. He assumed RA, and when it wasn't RA, he dismissed me completely. Shame on him for such sloppy medical analysis. There are over 100 different types of arthritis and he chose the most common type and didn't even bother to look beyond that. Now that we have the internet, we are privy to the latest medical research. We may not be able to completely diagnose ourselves, but we can certainly come to an appointment well-researched and prepared to discuss all possibilities. Now that I know my diagnosis, and am aware of the symptoms, I can see that this disease has been presenting symptoms for the past 25 years. Had this rheumatologist asked about possible problems with my feet, my jaw, and other joints that are commonly affected by PsA, he might have been able to draw some conclusions early on. 

March 01, 2015

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.