May 11, 2016

Maddie's arthritis began at age 5 and from the beginning, presented itself as a flair here and a flair there, with months of perfectness in between. She is now 13 and this disease is changing shape. It's becoming more constant, more present in everyday life, or at least in every morning life. There's a stiff wrist here and a swollen toe there, a patch of psoriasis here and an ache there, nothing too terrible, nothing that keeps her from dancing ballet most of the time. We have to count our blessings though. Maddie's pain and swelling isn't bad enough or constant enough to start Methotrexate. She just keeps taking Diclofenac and that seems to do the trick for now. We are trying to delay the start of DMARDs for as long as possible. As it is, she has been seeing an Endocrinologist, or the "shortness doctor" as she calls him, for her lack of growth. She's not on the charts for height/weight and the arthritis could have something to do with that. We just don't want to add any new medication that could interfere with her body or growth. Maddie's learning how to use her disease to get what she wants, or doesn't want. She is always pain-free when it's time to go to dance classes, but has aches and pains when it's time for housework and chores. Funny how that works, isn't it?

September 03, 2015

I've been in a really good place this summer, so has Maddie. She's felt completely normal, not even the slightest twinge of enthesitis. And I have done remarkably well too. In Spring, we both got Strep Throat, the only ones in the family of course. Maddie's improved quickly. Mine took a lot longer. I was put on some strange antibiotic that wouldn't interfere with the methotrexate already in my system. Of course I stopped taking all arthritis meds to fight this infection. But, the moment the Strep left, bronchitis took its place. Oh how nasty that was. My body was too busy attacking the infection to bother with my joints, so I was glad about that. I knew I was getting better however, when my joints began to ache once again, so I shot up on Humira. I never did return to the MTX. I felt okay on just Humira and still do. I hope it lasts because I detest MTX and how it makes me feel. So for now, I'm seeing the illness as a blessing in disguise for getting me off the MTX. Here's hoping the Humira and Celebrex can get me through the winter. I have a rheumatology visit soon so we'll see if I get a lecture for stopping my medicine without a consultation.

Maddie saw a Pediatric Endocrinologist yesterday. The pediatrician is concerned that she's not growing (her height/weight is totally off the chart now). Juvenile Arthritis can stunt growth. Maddie gave several vials of blood, did a wrist x-ray, and now we wait and do another blood test in a few months to see if her growth hormone has been active. Apparently this is a long process. Just one more doctor to add to the list. Maddie is now on a weight-gain diet (weight precedes height in the growth process). So I've got two kids on weight-gain diets and a husband trying to lose weight. This ought to be interesting.

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 prednisone 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 prednisone 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 prednisone, starting hers in mid-November. She started flaring 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 prednisone. 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.