"Concealing an illness is like keeping a beach ball under water." - Karen Duffy The malaria drugs aren't working.
When I found out today, that Todd and his Rheumatologist decided it was time he was put on Methotrexate, I softly walked into the mammography dressing room at my work and quietly wept for what seemed like a great while. Finally, deciding that I couldn't sit in there all day, "Come on now, get up now, I'm not alone at all." I gathered myself, deciding that if anyone came into my office I would just blame my appearance on allergies. I've found out that you can blame pretty much anything on allergies.
I spent a good time distressed in that dressing room, but I've found people to cry over much, much less. Our situation could be worse. I know that. I've had a nine year old patient with hands so crippled and deformed that you'd absolutely refuse to believe they weren't that of an 85 year old woman. I've seen a 17 year old boy who already had two total hip replacements. Just kids, much younger than Todd, but with rheumatoid arthritis much more severe.
I think what's especially devastating is that fact that we've tried pretty much everything. In alphabetical order: acupuncture, exercise, fluid draining, a gluten free diet, Hydroxychloroquine, nightshades free, nonsteroidal anti-inflammatory drugs, massage therapy,Sulfasalazine, omega 3's, physical therapy, Prednisone, strength training, steroid injections, supplementation, the foam roller, The Stick, a vegan diet, and yoga. We've played seek and find with everyone possible treatment, only to be let down time after time again. It seems that we're at last, at the end of the line. That's the worst part. That there's nothing left but chemo drugs. They may lend relief from inflammation and pain and possibly stop the degradation of joints, but it's at the cost of a healthy liver, strong immune system and longer lifespan. It also means continual blood work and regular appointments with the rheumatologist. Maybe all we did was believe if only for it's sake, but now we don't even have that. I guess I'm saddened and surprised that we're only where we are now, regardless of our fight. At times, when vulnerable, I feel that our efforts have let us down.
That's not true though. Some things we tried did help, even if only a little, but some really didn't help at all. Acupuncture was one that didn't help, exercise helps but it has limitations, the fluid draining from Todd's knees is wonderful. He's had it done several times. We discovered (bittersweetly) that being gluten free didn't make much of a difference. Hydroxychloroquine is the malaria medication, and it clearly didn't produce the results we had hoped. If you read about rheumatoid arthritis and it's relation to diet, the repeating advice is to avoid meat, dairy and nightshades. We try to avoid nightshades most of the time but Todd seems to think that they don't really bother him. Milk, we found, is a huge trigger. Aleve and Advil are okay, but they can only help mask the pain and can be damaging when taken chronically.
Todd has been going to massage therapy for a long time. It helps but it never really solves the root of the issues. It's just a temporary fix. Todd was on Sulfasalazine in high school and also I believe, in college, but ended up going off it. Fish oil made his arthritis worse. Physical therapy is a bit helpful but it doesn't address the inflammation issue. Prednisone works like a freaking miracle but it's very short term, and is so very horrible for the body. Todd does strength training regularly and it helps. The steroid injections in his knees work well but you're only permitted a few per year as, ironically, they can degrade the joint. We still do some supplementation. We take B12, calcium and vitamin D. Todd puts the Raw Meal by Garden of Life in his shakes and I know that it has a plethora of additional supplements like chlorella and varying seed sprouts. The foam roller and The Stick work kind of like a massage and can help with the tightness a bit.
So what did we find was the most helpful in regards to easing Todd's symptoms of RA? Converting to a vegan diet has helped him the most out of anything we've done. Honestly, I was kind of surprised. I didn't really expect it to help as much as it did. I am profoundly happy, as it's probably one of the only ways to get Todd to eat better! Captain Vegan Junk Food, indeed. It's a work in progress, but hey, all that meat and dairy was replaced by veggies and beans! Mostly. If you have rheumatoid arthritis, I implore you (be sure to talk to your Doctor first!) to try being vegan for a week or two and see if it helps. Yoga is another thing that really seems to help Todd feel better.
So our course of action now is Methotrexate, along with the things noted above, that we've found helpful. I'm proud that Todd and I have been able to address the disease from all angles. We've stuck with the things that seem to work and let go of those that don't. I'm most glad to see that we're at least cognisant in accepting the sad truth that we're aware more help is needed. I guess we've arrived at that bridge. Wallowing in sorrow isn't becoming and it doesn't help anything get better. We won't let RA control our lives, I know we've done too much and come too far to give in now. We'll do whatever we need to.
I hope, if you happen to have rheumatoid arthritis that you find at least some of this useful. I know I've found comfort in reading other people's experience with Juvenile RA, what they find solace in and what helps them relieve their RA symptoms. I hope this post can offer that to at least one reader.
I should note, too, that Todd of course is handling this much better than I am. Usually I am very strong and try to think, "There's more we can do..." but now I feel that there's not much else. I finally got to the point where, like Karen Duffy expressed, my struggles felt like trying to keep a beach ball underwater. I've done a fair job though. It's only escaped swiftly to the surface twice. My Dad knows about one time and this is the other. That's not too bad.