From November of last year, until around the beginning of this current month, Rheumatoid Arthritis Guy has basically been in one big flare. The most challenging periods, those times when the extreme pain and stiffness could be measured in weeks and not in months, still stand out clearly in my mind: January, March, and July.
While each and every day during these past ten months was not necessarily marked by a flare, ‘good’ days such as these were definitely the exception. Having one day every week or so, during which I could sit back and catch my breath from this non-stop marathon, became much more of the pattern.
These periods of low-level pain and disease activity were often of such short duration, that I could often feel the next flare coming on just as soon as the last flare was tapering down. It felt like I was constantly trapped between two sine curves. (Okay, the mathematician geek in me is coming out!)
At times, I really did feel like a marathon runner (although ‘hobbler’ or ‘limper’ might be a more appropriate description.) As long as I tried to stay one step ahead of the worst of my pain and disability, I felt okay. Problem was that I had to run and run and run and run until my illness gave me a break. (10K marathons, step aside…10 Day marathons are where it’s at!) I never knew either when they would come, or how long they would last. But I did learn one important lesson: enjoy these breaks as much as possible, no matter how short or long they might last.
(And by ‘enjoy’, I don’t mean go out and overdo everything. I’ve definitely learned this lesson on more than one occasion.)
During this almost past year, there were also the occasional–and even more rare–two ‘good’ days in a row. I remember those mornings well, waking up practically prepared to jump right back into a flare, and being pleasantly surprised when this did not happen. But inevitably my flare would return…it had taken its weekend off (which never corresponded to my actual weekend, of course) and my RA was more than ready to get back to work.
And while I continued to focus as much as possible on improving my levels of acceptance and coping skills, what I dreamed about, what I yearned for, was that perfect trifecta: not the first- second- and third-place of horse races, or the Triple Crown, but those three wonderful, almost magical, days in a row where my rheumatoid arthritis symptoms were at the bottom of the range. I wasn’t asking for too much, I often told myself…just three days!
Alas, month after month passed without such a thing happening…but I never seemed to lose hope, no matter how bad things actually got.
Which makes the past two weeks even more special than they have already been. You see, it’s been fifteen days since my last major flare…and in my head, I find myself keeping count, like a “this company has not had an accident in X number of days’ sign that often hangs on the side of a factory wall.
But this time, I’m not keeping count because I’m worried about how much longer this break might or might not last.
I’m keeping count to remind myself that once again, no matter how much is seems like things will never get better, they eventually do.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I don’t think I’ve ever elevated a comment to post-of-its-own status, but one of the comments on my previous post references a subject that deserves coverage:
We seem to be in the same boat of pain right now. I cried all the way in to work today and I’ve cried all morning long. I hate the painkillers because they make me too sleepy to work, but I hate the pain. The Humira doesn’t last long enough. The steroid shots don’t work the way they’re supposed to, and the prednisone isn’t doing the trick. The mtx is just there.
Sometimes I just want to die and get it over with. Of course, I’d never do anything to make that happen, but if I keel over one day I will for sure have a DNR in place. This is hell on earth.
This is something that isn’t talked about as much as it should be. Being sick isn’t for sissies.
Lately there has been a focus on suicide in the realm of chronic illness, including a particularly relevant post by Itis. My gut wrenches for the pain of others considering suicide as an alternative for whatever they are suffering from. I found a blog post by a featured writer on Rheumatoid Arthritis Guy’s website last week. It was a blatant cry for help; it mentioned taking their own life. I promptly wrote an email to the person that has gone unanswered. I also c:c’d RA Guy on that email to make him aware, as I had referred this person who reached out for help to a recent post RA Guy shared, about his own struggle with contemplating suicide. In the email, I shared some additional information and my own words of encouragement. My prayers were answered when RA Guy intuitively responded – as I knew he would – by getting the word out to his well-visited networks, discreetly and appropriately that a member of the RA community needed our help. So very many rallied to aid and offer care. I wonder how this person is doing, and if the love and care reached as intended.
If you are depressed or if you are contemplating suicide, please reach out for help. Speak with a friend. Speak with a family member. Speak with a suicide support line. Speak with a doctor. Speak with a therapist. Speak with a psychologist. Speak with someone online. Don’t feel ashamed, and please know that things can and do get better.
Most importantly, don’t lose hope. Don’t ever lose hope!
I think it’s a powerful thing that so many people use RA in the description of themselves, but do not see themselves as being defined by it. It’s never, “I am an RA sufferer who is also a mother/teacher/fireman/Indian chief.” It is always, “I am a mother/teacher/fireman/Indian Chief and I have RA.”
José AKA SKRDad AKA Uncle Hoe and Dad (the last two being the 2 favorite names I have ever been called)
Scottsdale, Arizona, United States
How long have you lived with RA?
5 years and counting… Not that I am counting. Heh…
What advice would you give to someone who has just been diagnosed with RA?
Educate yourself on your condition. Do your homework on this. It is essential that you understand what you are in for, that you know the monster you will battle for the rest of your life. There are many different colors and flavors of RA. There are many treatment options and you need to be able to make educated choices. You also need a good support system. Your medical team, family, friends… It’ll take support from all. Twitter is a good place to find supportive people who know what you are going through. Other places are blogs and Online Discussion Boards.
Do you use any mobility aids?
I have a cane. I’ve used it mostly when I was rehabbing from knee surgery. I had both knees scoped to clean up what 30+ years of competitive soccer had done to the meniscus. That’s what led to my diagnosis… Anyway, I rarely use the cane but it has come in handy during particularly bad flares. I also bought myself a hiking stick, my kids love hiking on our vacations and I thought it might come in handy. It is made for serious hikers and it cushions impact. I have not had a chance to test it out, neither hiking nor flaring… I do have a Handicap Tag for my car. My Rheumy recommended it and I reluctantly agreed to applying for it. It has saved me many times. There are days when parking up front allows me to be mobile enough to do whatever shopping is needed. Had I parked way out from the store, it would have taken everything I had just to get in the door. A couple of weekends ago, I took my family to Comic Con International. I was able to find parking because of it and so the family joke now is that the Silver Lining for my RA is decent parking. Heh…
How has living with RA helped to improve your life?
That’s an easy one. It has helped me raise my kids aware of Life. Life isn’t always easy, but I truly believe that it is what we make of it. I always preached to my kids that we aren’t victims… that things don’t happen to us, that we make things happen… RA gave me the opportunity to lead by example. It gave me the opportunity to be a better me…
My very devout Catholic mother told me when I was diagnosed, that this was my chance. God was giving me the chance to show who I am. To become a better me… She told me that RA would either make me Bitter or Better… She then took a long look in my eyes and said “I don’t see Bitter in there…” And so I strive for better every day of my life…
Do you have any visible signs of RA?
My right hand has some deviation. My fingers don’t all point in the same direction anymore. But unless I show you and point it out, it isn’t all that noticeable. I just refer to it as my Quasimodo hand.
Can you please describe some of your favorite coping strategies for living with RA?
Emotionally? I’m not sure. I’ve never had a problem accepting my RA as part of my new “normal”. I do find that I am more emotional. My emotions seem amplified most days. I’ve been told that it’s not unusual but I am not sure if it’s RA related or not. I could just be getting old. Heh…
Physically… When I feel worst, I just continue my life as usual. I keep moving forward. I find that I can’t stop. If I am home, I do laundry. I keep myself distracted with a good audio book or podcast on my ipod, and I keep moving. It’s almost a compulsion. Weird?…
Can you please describe your current medical (traditional and alternative) treatments?
I am on Plaquenil, Arava, Meloxicam, Omeprazole and Simponi. Simponi is the newest and it is a self-administered shot. I was told it was a Pen and I was shown how to use it. Then there was a recall on the Pen and I was sent a syringe. That is something I am just now, after 5 doses getting used to. Doesn’t hurt exactly, but I find sticking a needle into my own thigh a bit disconcerting…
I have also changed my diet. I have completely taken Gluten out of my diet. It turns out I am allergic to it, so one of my dr’s thought it was a bad idea that I stress out my system eating it. I agreed, so it’s out. We (my wife, kids and I. They decided we are a team in this) have added lots of fruits and vegetables to our diet and cut back in all processed foods. Also, we have cut back on red meat. I only have it once a month or so. This was a recommendation from one of my dr’s as well… These changed were much easier than I had originally feared. They have also had a positive impact on how I feel and my energy levels as well…
Is there anything else about yourself that you would like to share?
The only thing I have given up in my life so far has been playing competitive soccer. It’s something that I was probably getting close to doing anyway. I was not liking the fact that I had reached a stage where I was no longer the best player on the field. Now I have an excuse. Heh… But seriously, I believe it is very important that I not let RA dictate who I am, what I do. Yes, it restricts me to some degree, some days more then others. But other then that, I refuse to let it define me. I still coach my son’s teams. I chaperone my daughters’ band trips. I am on the Booster’s Board for both my daughters’ bands. I am active in my son’s school’s PTO. I work full time… In other words, I live life to its fullest. I want my kids to remember ME for who I am and what I did. I want RA to be a footnote. “Oh yeah, and he happens to have RA”… To what extent I am and will achieve this remains to be seen. But Life is the Great Adventure and there are never any guarantees. You get one turn on this ride. Enjoy it…