April is an extra-special month. Not only do I turn 39 years old on April 18th, but my blog RheumatoidArthritisGuy.com also starts its “4th Season” less than a week later. (My first blog post was three years ago, on April 24, 2009!)
I’m dreaming big about what I want my birthday gift to be this year. Here’s the catch, though: I don’t want something just for myself. I want something for *all* of us superheroes around the world who are living with inflammatory arthritis.
I want to turn Show Us Your Hands! into an official 501(c)3 nonprofit organization by the end of 2012!
In order to do so, however, we need to raise the funds that are required to pay for all of the different start-up costs. That is why this year, I’m dedicating my birthday wish to this wonderful cause.
Will you please join me this month in celebrating my real-life and superhero birthdays, by contributing to the Show Us Your Hands! Start-Up Fund?
Mattel, the maker of Barbie, will produce a bald fashion doll for children who have lost their hair because of illness or cancer, the company announced today.
“These dolls, which will be a friend of Barbie, will be distributed exclusively to children’s hospitals and other hospitals treating children with cancer throughout the U.S. and Canada, directly reaching girls who are most affected by hair loss,” said Mattel Company spokesman Alan Hilowitz in a statement.
West Hartford, Connecticut, United States – for now!
How long have you lived with RA?
Almost 4 years, my RA came on very suddenly, in May 2008, after an international move and a minor lower back injury. My health had been phenomenal until that point.
What advice would you give to someone who has just been diagnosed with RA?
My advice would be to have as much physical fun as you can, while you can. Travel extensively while you can. Do your research, and learn about the science of RA. Teach your friends and family about the realities of RA. Get very familiar with your insurance coverage, and start saving money for a rainy day! And give up wheat!
Do you use any mobility aids?
My husband is invaluable- he does SO MUCH to help me! Ankle braces, wrist braces, wide toe-box shoes, electric blankets, stair rails, elevators instead of stairs neck wraps, daily hot baths, and even warm scarves help tremendously.
How has living with RA helped to improve your life?
Nope, not in the least! Well, it has made me more focused, more organized, more determined, and more stable in some ways. But it has dramatically curtailed my life full of adventures!
Do you have any visible signs of RA?
My body has changed quite a bit with my RA, almost thickening up. I’ve got nodules on my feet, ankles, and wrists. I had dramatic hair loss from the first 2 rounds of meds, vision loss, hearing loss, and my eyes go fire engine RED during a big flare-I have a limp that is getting very hard to hide!
Can you please describe some of your favorite coping strategies for living with RA?
LAUGHTER- I get it whenever I can! I sleep and rest whenever I can, and have learned to plan out my time in advance so that I can recover from my daily life. Reading other peoples blogs for the first 2 years helped tremendously- to see that I wasn’t alone, and that there are many forms of hope in spite of RA. Writing helps to release confusion, anger, sorrow and pain. Gardening has gotten me through some of the worst times, and just being outside on a regular basis gives me balance and strength. My wonderful dogs have helped more than I could ever describe.
Can you please describe your current medical (traditional and alternative) treatments?
Currently I am on the antibiotic protocol- Minocycline. I get weekly PT treatments, and use anti inflammatory daily. My diet is wheat free, mostly plant based, and I take a wide range of supplements. A recent emergency room visit left me with 5 prescriptions for pain pills, but I avoid them like the plague-In the past 3 years, I have tried MTX, Plaquinil, Prednisone, and was scheduled for Remicaide infusions 3 times, but got pneumonia 2x, that knocked the Remicaide option out for me- My Rheumy has consented to try the antibiotic protocol for 6 months, andif it doesn’t then we might try Orencia. So far, every form of treatment seems to help for a couple weeks, gets my hopes up for remission, and then the RA rears its ugly head again…each time a little bit stronger than before.
Is there anything else about yourself that you would like to share?
I’ve been extraordinarily lucky in my life, and have managed to fit 4 lifetimes into my 45 years- Despite this endless pain of RA, I am curious about what form my life will take in the next 2 years, 5 years, 10 years. Whatever happens, I tend to remain happy, curious and eager to experience life to its fullest, on the good days, and the bad.
When I was a child I had a fever
My hands felt just like
Now I’ve got that feeling once again
I can’t explain
You would not understand
This is not how I am
I…Have become comfortably numb
The other day I woke up during the middle of the night, and was surprised to find most of my pain was gone. As I turned over in bed, however, I quickly realized what was going on. I was actually experiencing quite a bit of pain…so much pain, in fact, that most of my body had gone numb.
I continued to lay there, all the while thinking about how amazing it was that my brain was so overloaded from all of the pain signals that my nerves were sending, that these signals barely even registered any longer. It appeared to be my body’s (or at least my brain’s) secret defense mechanism for dealing with these unimaginable levels of pain.
Once, I actually received some first-degree burns during physical therapy. Hot compresses had been wrapped around my hands and wrists to help decrease the inflammation. When they were removed we noticed bright red marks around my wrists, which ended up lasting for days. My hands were so inflamed, and were in so much pain, that I wasn’t even able to recognize that they were being burned by the heat.
I’m once again at a point, at three o’clock in the afternoon, where most of my body is numb. It’s an odd sensation, knowing that my body is there, but not being able to feel it all. Knowing that the pain is there, but not being able to feel all it all. These feelings used to make me freak out, and used to make my mind race out of control.
Now, I just take some solace in the fact the even though the pain is really bad, this natural numbness makes it just a little more bearable.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy.
“Adrienne Rich, a poet of towering reputation and towering rage, whose work — distinguished by an unswerving progressive vision and a dazzling, empathic ferocity — brought the oppression of women and lesbians to the forefront of poetic discourse and kept it there for nearly a half-century, died on Tuesday at her home in Santa Cruz, Calif. She was 82.
The cause was complications of rheumatoid arthritis, with which she had lived for most of her adult life, her family said.”