This was my life before arthritis. My Decembers were filled with so many concerts I didn't have time to breathe. I directed several, performed in some, and observed others. As my kids started getting older they started having concerts too. On Friday I went to one of the concerts I used to direct, Melody Makers, two large children's choirs at my kids' elementary school. I turned the baton over to a new director two and a half years ago and she vows this will be her last year. I'm getting pressure to direct once again. My heart wants to. My body knows it can't. It makes me sad. I want my old life back. I want to be that power woman once again who juggled a million things at once, who tackled the music world head on. I want to organize and direct concerts. I want to perform again. I want my body to have more than 8 hours each day to get things done. I hate that I've turned into one of those "incapable" people. I want to scream "THIS IS NOT THE REAL ME!".
November 19, 2012
November 09, 2012
Scleroderma. That's Grandma's diagnosis. There's no way to know how long she's had this horrific disease. It has been destroying her lungs which are now at 50% capacity. Scleroderma doesn't appear to be related to the HLA-b27 diseases my sister, my daughter and I all have. My 6-year-old nephew (son of my sister with arthritis) has been having blood sugar tests way out of the normal range and it's looking like Juvenile Diabetes, Type I, an autoimmune disease. With this many people in one family getting diagnosed with autoimmune diseases you have to wonder if and how it is all connected. And I also wonder why after so many years, have they not found a cure for a single autoimmune disease.
My husband jokes that it's our "royal blood". Our genealogy goes back to the kings of England.
My husband jokes that it's our "royal blood". Our genealogy goes back to the kings of England.
September 25, 2012
My grandmother has been dealing with a myriad of health problems. After some intense tests she was told she has an autoimmune disease. She sees a rheumatologist tomorrow to get an exact diagnosis and create a plan of care. That makes 4 of us, Grandma, me, my sister, and my daughter Maddie. Why the sudden increase in autoimmune diseases in our family?
September 11, 2012
It's easy for arthritis patients to forget how important their medicine is. After many weeks of feeling almost normal we tend to forget that these biologics are limiting the pain and increasing our movement. Last month I got an infection, started antibiotics, and stopped my arthritis meds so my immune system could kick in. After missing my first Enbrel shot I still felt okay for a couple of days and I thought, maybe I don't really need this anymore. But then it hit, the intense pain. I had forgotten how much pain Psoriatic Arthritis causes. It was debilitating. It made me cry. It kept me awake at night. It changed my dreams to nightmares. It made me grouchy and irritable. Once I was able to get an Enbrel shot again, within two days I was back to my new normal. My heart goes out to all those who have suffered for years without the amazing drugs we have today. My life is very different because of my disease but it would be unbearable without the medicine.
August 14, 2012
I've sort of been out of commission since starting a new anti-inflammatory, Indomethacin. This was to replace the Meloxicam which wasn't strong enough to deal with the enthesitis in my heels. I tried this new NSAID for a couple of weeks and it was a failure. I experienced almost all of the side effects possible. And to top it off I was in a fog the whole time, experiencing memory loss and lapses, very dangerous when you're trying to take care of children. I sat at the gas station and cried one day because I couldn't remember how to open the gas cap and fill up the car with gas, a car I've had for 10 years. Very scary! So, I'm off that and the doctor sent in a prescription for Meloxicam which I pick up today. Sometimes pain is better than the alternative.
July 07, 2012
The last two rheumatology appointments for Maddie she has seen a nurse practitioner instead of her rheumatologist. I understand there are only 2 pediatric rheumatologists in all of San Diego, Riverside, and Imperial Counties (over 3 million people). But, I just don't feel comfortable with anyone other than her doctor. The nurse practitioner mainly deals with fibro patients and his exams clearly reflect that. He's thorough but at the muscular level, not examining the joint inflammation as closely.
This last visit I told the nurse practitioner Maddie had just come out of a big flair and more joints were involved. He called in the rheumatologist to consult just as he did the previous visit, adding to the doctor's already jam-packed schedule. I am so glad though, because the treatment plan the nurse practitioner was suggesting (MTX weekly) was far more invasive, I feel, than what the doctor suggested (as soon as a flair begins, start a large dose of prednisone for 2 days and taper off for 4-6 weeks). Maddie's flairs are typically months apart so the last thing I want is for her to be on constant immunosuppressant drugs. We tried the prednisone route last year for a really bad flair and it worked really well, without a rebound. So I left the office with a prednisone prescription and if Maddie has a flair I give her the steroid. Sounds like a plan.
When I made her next appointment I respectfully requested she see the doctor, as he's had to come in on a consult anyway both times we've had appointments with the nurse practitioner.
July 03, 2012
I experienced TSA in a whole new way on my recent trip to New York. It was a long trip so I had to bring 3 injections of Enbrel as well as Maddie's liquid Naproxen. I called Delta and the TSA ahead of time to find out how to get through security with a cooler, frozen gel packs, syringes, and a large bottle of liquid medicine. I was told it wouldn't be a problem, just to inform the TSA agents what I'm carrying and let them know I don't want the syringes to go through the x-ray (a recommendation from TSA over the phone). Well it turned out not to be that easy. I informed the TSA that I had liquid medication and they said to send it through the x-ray. Because I wouldn't let them x-ray the Enbrel I had to undergo a full pat-down. And then I got a lecture for sending the liquid through the x-ray (different agents, obviously not communicating too well). My husband went ahead and took the kids to find our gate so I didn't have Maddie with me but had her medicine, which TSA thought was suspicious. You know, you can never win. The funny thing is after the full pat-down they never did open the Enbrel case and look at the syringes. I could have been carrying anything in that case and they would have never known.
May 06, 2012
Maddie once went months without a flair-up. Her Pediatric Rheumatologist thought she was heading toward a remission. Then it struck, her worst flair-up ever, until now. The reason I feel like this is the worst is due to the number of joints involved...knees, ankles, wrists, knuckles, etc. It's following the same pattern as my arthritis. Maddie's joints are painful and stiff in the mornings. By 11 AM she's no longer stiff and for about 8 hours in the day she is able to move freely. Then she slips into a state of more stiffness and pain in the evening. This is so unlike it's been with past flairs where she has had one or two affected joints which are stiff in the morning and gradually get better throughout the day being the best in the evening.
I have been feeling so discouraged that her hands and wrists are now affected. Maddie is such a talented musician. Her violin teacher was devastated when he heard about the arthritis in her hands. She has studied with him for 3 years and he has great plans for her musical future. I too, as her piano teacher, have such great plans. Maddie has performed well in several piano competitions, winning prizes. It's tough for a little blonde white girl to compete in the Asian-American dominated music competitions. And yet she amazes the judges with her natural artistry. The fact that this gene was passed to my daughter through me causes tremendous guilt even though I know that I had no knowledge of this gene until 2 years ago. The heart doesn't listen to logic.
April 26, 2012
We filled Maddie's prescription and she continues to take Naproxen. Her flair is getting worse. Yesterday she woke up and the entire right side of her body was hurting, knee, wrist, etc. She couldn't walk or hold a pencil to write. That's not good since the California Achievement Testing is still going on. Because we have a 504 plan in place, her teacher was going to sit next to her during the test and bubble in the answers Maddie gave her. But, once they started they both realized that since it was math testing Maddie needed to be able to figure out the problems on scratch paper. The teacher couldn't help her with that. So, no testing yesterday. She'll have to do make-up testing another day. The medicine helped her so that by the afternoon she was able to attend her violin lesson. One good thing about the right hand being inflamed is that it only has to hold the bow. On the violin, it's the left hand fingers that have to do all the really hard work.
April 23, 2012
I received an email response from Maddie's pediatrician today. She is re-writing Maddie's prescription with an exemption listed on it to cover the cost of the medicine. I wonder how many times I can get that exemption? I suppose this is the new way in health care. Insurance companies make their formulary lists and doctors override them as necessary. Are there consequences if a doctor overrides too often?
April 20, 2012
Maddie saw her Rheumatologist at Children's Hospital today and now I'm in a huge battle with my insurance company. They don't want to cover her prescription for Naproxen suspension (liquid). Apparently as of this January it is no longer on the Formulary list (meds covered by our insurance). Seriously? It's the staple anti-inflammatory drug for arthritis! There is really no alternative for children. The pharmacist suggested Advil, so ridiculous. If Advil worked why would we be needing a prescription medication? I spent an hour and a half on the phone, sending emails and leaving messages for her pediatrician, the pharmacy, member services for my insurance company. Maddie's Rheumatologist said we could switch to liquid Meloxicam but apparently it is unavailable in the US at this time. My insurance company has no problems covering my $2000/month Enbrel prescription but can't handle a $90/month liquid anti-inflammatory for a little girl. It's outrageous!
April 19, 2012
Maddie is having a flair-up. Both knees are affected this time. She is preparing for the ballet Cecchetti exams next month so this has not come at a great time, not that it's ever a good time for an arthritis flair. I'd rather be in pain than watch her suffer. It's almost unbearable watching your child deal hurting. She's got a happy attitude though and is so very graceful as she deals with another setback.
Maddie and I both have HLA-B27 arthritis but hers manifests so differently from mine, as most juvenile arthritis does. Maddie has periodic flairs that show up without rhyme or reason. They may last a few days or a few weeks, then she is symptom free for weeks or months. Mine stays with me every hour of every day.
April 15, 2012
I caught a cold, nothing extraordinary under normal circumstances, but extremely painful when you're on immunosuppressants. I had to quit my lovely meds for two weeks while my body fought a cough and sniffles, only it's not just a little cold for an arthritis sufferer. Without the Enbrel and Methotrexate the arthritis pain returns full force within a matter of days. I was healthy enough to receive an Enbrel injection a couple of nights ago and I woke up the following morning with relief in my joints. Oh how I love 21st century medicine.
March 31, 2012
I always get the same pharmacy tech when I refill my prescriptions. She's nice, we talk, she treats me like a friend not a patient. She updates me on her sister's RA and I update her on my arthritis woes. A couple of months ago I was whining to her about the side effects of the Methotrexate and she suggested I ask the doctor for the injectable form. Yesterday I picked up my Enbrel and reported back to her that due to the Methotrexate shortage they were reserving the liquid form for cancer patients. She looked relieved. Come to find out her 2-year-old son has Leukemia and uses the liquid form of Methotrexate. It has been a struggle getting that drug for him. Wow, I feel like I never want to complain about Methotrexate side effects ever again. If I have to endure the nausea and vertigo so that child cancer patients can have the liquid form I'm happy to do that.
From what I've been able to find out in my research, there are 6 companies that produce Methotrexate in the United States. One company, Ben Venue Laboratories (the manufacturing arm of Bedford), voluntarily suspended manufacturing of all products in November 2011 to address manufacturing-related issues at its facility (whatever that means). The instant demand on the other 5 companies caused a shortage as they have been unable to produce enough Methotrexate. Thus, we have a nation-wide shortage of injectable Methotrexate with cancer and arthritis patients being the ones forced to suffer through the shortage.
March 29, 2012
Tonight I went to a church event where a musical play was performed. It was bittersweet. I used to be the one running musical events at my church, directing the choirs, organizing musical performances. A couple of years ago I had to un-volunteer for all those jobs because of my health. I had been asked, begged even, to be the musical director or an actor for this play tonight. But I had to turn them down, again. The performance was nice. It didn't hit me until I was walking out into the parking lot, or rather limping out, when people were asking me if I had hurt my ankle or something and I had to blame rheumatism once again for my wobbliness. And when it did hit me it made me sad. As a once active leader in these types of productions I've succumb to the new pace of life I must lead. I'm weak, slow, unsteady, and sickly. This is my new reality. It's my new way of life. Just when I thought I had accepted where I'm at a reminder is presented of the lifestyle I used to have and the tears come.
February 22, 2012
It's over, my flair up, and I feel great. I think my short trip to San Francisco helped me feel better. I was able to have fun with my girls, once Maddie's competition was over, and forget about all the worries of day to day life. My kids are out of school this week so I took the week off teaching too. I am amazed at how stress influences my arthritis. This week I'm stress free and my arthritis is reacting accordingly. By the way, Maddie won 2nd place in her piano competition. She performed with perfection and artistry.
February 12, 2012
My arthritis has made me feel so conflicted politically. I have always been conservative, both fiscally and socially. The presidential primary candidates are currently slamming Obama's healthcare plan. Don't get me wrong, I was angry about national healthcare. I don't want America to turn into Europe. I want continued and easy access to my arthritis meds and my rheumatologist. My friends in Great Britain don't have that. However, I want to never lose access to my private health insurance. My disease costs about $30,000 a year to treat. If something were to happen to my husband and he were unable to work we would lose our insurance and no company would take us on because of Maddie's and my pre-existing conditions. Under Obama's plan insurance companies have to allow pre-existing conditions which means as a self-employeed person I can always buy insurance despite my arthritis. So here's my dilemma...
1. I despise the idea that we're heading toward socialized medicine and I believe we're being fiscally irresponsible assuming more debt to pay for it.
2. I want assurance that I'll always be able to purchase private health insurance that will cover my arthritis meds.
February 07, 2012
February 06, 2012
I'm experiencing an arthritis flair that started a couple of weeks ago with the rain. So the rain came and went but the arthritis pain never went and I just heard more rain is in the forecast. I've sleeping longer at night and the pain in all my joints is intense upon waking. At age 38, I'm like an old woman waddling around the house. My appetite has diminished. I make myself do an hour or so of housework each day, someone has to get the laundry and dishes done, but the housework exhausts me. Thank heavens for my laptop which helps me feel productive when it hurts to move. I'm able to teach my piano students each afternoon, but I can't play the piano very well because my fingers are lethargic. After lessons I hobble to the sofa to curl up next to the warm fire. I think the flair is winding down because I haven't had as much pain upon waking the past two days.
January 20, 2012
I had an interesting conversation with Maddie's Pediatric Rheumatologist today. I told him we have been getting a lot of unsolicited medical advice since our diagnosis'. He said that is always what happens. I told him about the oregano oils my in-laws wanted us to use and the turmeric pills someone at work gave Joe to have me take, etc. This doctor has been working with arthritis patients for over 30 years so he's seen it all. He said the homeopathic pills, oils, and herbs do not even come close to the benefits of modern medicine. These other methods are almost like doing nothing at all and the end result is crippling. I am so thankful for modern drugs that keep me mobile and will hopefully lead to remission.