February 28, 2011

I joined the Enbrel support group today. I don't know what possessed me to do it except that the phone number was on the box so I dialed it. Apparently they are going to send me some freebies like alcohol wipes and a carrying case.  I love free stuff.

February 27, 2011

Maddie woke up limping this morning and sure enough she has a swollen knee. Her last flair was 2 months ago. Usually her flairs are further apart.  I hope this doesn't mean the disease is getting worse. I started her on Naproxen which I hope will be enough this time.

Maddie's arthritis developed about a month after getting mononucleosis as a 5-year-old. I didn't even know kids that young could get mono. We joke that it was from sharing lip gloss with her friends at recess. The arthritis started in one knee. She had been limping a few days and I assumed it was from a playground injury. One morning she was complaining a lot about her knee pain so I took a closer look. When I tried to straighten her leg she screamed out in pain and I knew something wasn't right. I was able to get her in to a doctor that morning, not our regular pediatrician though. That turned out to be a blessing as this doctor became our favorite and we haven't seen another pediatrician since.  Lots of tests were run and scary names of illnesses were thrown around like Leukemia. Maddie was put on anti-inflammatories and sent home. The doctor called every day to see how she was doing; I didn't even know doctors still made calls like that. When the pain and stiffness didn't go away Maddie underwent more tests including a bone scan. Then we were referred to the Pediatric Rheumatologists at Rady Children's Hospital. I never suspected arthritis. There wasn't a family history and I hadn't ever heard anything about JRA. Since then she has had several flairs affecting only one joint at a time, knees and ankles. She's gone as long as 8 months between flairs. Really it has been a best case scenario for this disease. I pray it stays that way.

February 22, 2011

I went all day yesterday without using the heating pad. I've used the heating pad at least 2 hours a day for the past 4 months, minus a few days when I was on Prednizone. I didn't get tired yesterday. I stayed up past 11pm and woke up at 6am. Yea, the Enbrel must be working.

I was really disappointed before that my Rheumatologist had not seen either of these bumpy patches, what I suspect was psoriasis. It certainly would have made a diagnosis of Psoriatic Arthritis easier to come by, but then the doctor may not have ordered the HLA-B27 test. It was the combination of those test results and my back pain that made her suspect Anklosing Spondylitis in addition to PsA. Maybe she still would have figured it out but it might have taken longer.  I think it all worked to my advantage. I could have been stuck on methotrexate, sick as a dog. Instead I'm getting the best treatment the medical community has to offer. Methotrexate does not work for AS so you have to go straight to the biologics which work for both PsA and AS.

February 20, 2011

I noticed a 2 inch wide puffy red patch on my thigh this morning, a reaction from the Enbrel injection. As I was showing my husband he noticed a patch on my other thigh too from my injection a week ago. Maybe it has been there all week and I just didn't notice. The red patches were really itchy so I took some Chlor-Trimeton. Hope it works.

February 19, 2011

Maybe the Enbrel is working. I had very little stiffness this morning, just in my back. Joe gave me injection #3 which was less painful than the last two. Either he is getting better at giving shots or I'm toughening up.

I can't stop thinking about the Byron Janis story. He said his arthritis started with a red patch on his finger.  That is exactly how my arthritis started (different hand, different finger, same spot on the finger). Mine looked like a patch of psoriasis, which I had never had before, and it stayed for weeks.  When it finally disappeared in September 2010, the arthritis pain appeared. Doctors say it couldn't have been psoriasis because it doesn't appear on fingers.  

February 18, 2011

I practiced the piano today.  That may not sound like a big deal but I cannot remember the last time I was able to sit down and really practice, advanced music. I worked on music by Ravel, Chopin, and Bolcom. In college I spent about 4 hours a day at the piano and I expect 1-2 from my students. I have been so afraid of the pain I'd feel if I played that I quit playing, the advanced repertoire that is.

My sister-in-law sent me a link yesterday that compelled me to get back to the piano.


It's the story of Byron Janis using the power of his mind to deal with his Psoriatic Arthritis. He has been playing through the pain since 1973.  So today I decided to power up my mind and play the piano too. Only my right pinky finger hurt. I can deal with that.

February 15, 2011

I am in so much pain today.  My back is killing me and my knees and ankles don't want to move.  My friend called me and asked how I was feeling so I told her the truth.  She said she knew I'd be feeling bad because it's supposed to rain tomorrow.  Who needs a professional weather forecast, I've got my joints.

February 13, 2011

Maddie and I both visited our eye doctors this month to get checked for iritis and uvitis. These can occur with both our arthritis types.  I have to see an Optometrist once or twice a year and Maddie sees a Pediatric Opthamologist every three months.  Okay, so we don't actually get there every three months.  In fact the Opthamologist gave us a little lecture because it had been six months since Maddie had been in for an exam. The truth is I can't get her in every three months because his schedule is always booked, and I mean always. The office staff says to call on Monday mornings to book an appointment for 2 months from that day.  This time I called at 9:30AM Monday morning and they were completely booked.  This is the game we play.  Then I tell the receptionist to squeeze her in because the orders are coming from Children's Hospital, blah, blah, blah.  She can't see another doctor because of our Kaiser insurance.  This is it...one Pediatric Opthamologist in all of San Diego County.  We just have to put up with it.

February 11, 2011

I weighed in at 103 this morning.  The weight gain diet isn't working.

February 10, 2011

I am accompanying the 2nd grade in their patriotic performance. Today was the dress rehearsal and due to a scheduling mishap all 160 2nd graders were kicked outside to rehearse. I know it's California but it's still February and it was really cold, especially for my fingers playing the piano, yes the piano was kicked outside as well. The arthritis feels worse in the cold. With my stiff fingers it took everything I had to play those songs which would normally be really easy for me to play.

February 09, 2011

I called Maddie's Rheumatologist today to let him know about my HLA-B27 positive results. He had mentioned before that if I have Psoriatic Arthritis it may change the way he treats Maddie and he may want to start her on methotrexate. Knowing that, I've delayed telling him these results. Methotrexate is a nasty drug for anyone, especially a tiny 8-year-old girl.  

February 05, 2011

I passed my TB test which is required before starting Enbrel.  My husband gave me my first injection.  He runs a nursing home so he had his nurses teach him how to do it.  Apparently they had him practice by sticking a needle into an orange.  If only my thighs were as firm as an orange. The injection felt like a bee sting. I sure hope this works.