While sitting in the infusion clinic a few days ago receiving my first dose of Actemra (see photo), I began to wonder about the extra costs of having RA that aren’t covered by insurance or planned for in my budget. This thought came to mind as I pulled my parking ticket out of my pocket and wondered how much I was spending on parking per year. Then the thought expanded to all RA related costs that are’t included in insurance coverage and I decided to make an accounting of these costs.
Every now and then a doctor (other than my rheumatologist) will ask me if something hurts. When I say no, they look often look surprised and ask my if I’m sure, because I should be able to feel pain associated with whatever it is that is being discussed. It’s at this point when I usually realize that I need to provide a more explanatory answers, and if often sounds something like this:
All of my body hurts all of the time, due to my rheumatoid arthritis. Chances are that what you are referring to is actually causing pain, but it’s just not registering.
It’s sort of interesting/fascinating/odd/whatever when you realize that the pain of RA often prevents you from feeling–or even noticing–other pains in your body. Once during physical therapy, I wasn’t able to tell that the skin around my wrists was being burnt by overly-hot heat packs. It wasn’t until we unwrapped the bandages and saw the red burns that both my physical therapist and I thought “uh-oh.”
There have also been multiple times when I don’t feel a thing from the currents coming from a professional TENS machine. One physical therapist (different from the one mentioned above) assumed the machine was not working or that the electrodes were not plugged in correctly, as it was turned up to its maximum setting and I couldn’t feel a thing. (Not only that, but all of the surrounding muscles were completely still.) Upon touching both contact points, she immediately got “shocked” and reeled backwards.
And I sat there, somewhat in disbelief. My physical therapist could not even touch the electrodes that were applied to my knees because of the strong electrical current, while I could not even feel a thing.
My relationship with pain has changed quite a bit over the past decade, and I have no doubt that it will continue to change in the future. The more I get to know it, though, the more I continue to learn seemingly contradictory things, such as the fact that my pain does have a protective element.
I’m not referring to the actual pain signals that are being sent to the brain, which is one of the classic explanations for pain.
I’m talking about the numbing aspect of pain; of the idea that the pain can get so bad that I can simultaneously feel and not feel the pain (as odd as this may sound). As much as chronic pain hurts, at a certain point is has become my new normal. It is my new baseline.
And while what I have written up to now is based upon my physical pain, I am no way trying to deny the corresponding emotional pain that is always present. From this perspective, the pain if just as–if not more–numbing…and this is the true challenge: constantly working not only against the physical aspects of pain, but the emotional aspects too.
For too long, I often felt like I was being dragged along by my rheumatoid arthritis. If only I could get one day or one hour off, I thought, then I could rest and recuperate, and be better prepared to deal with this continual challenge. But these rest breaks never came, and my entire self became more exasperated.
“I can’t deal with this pain,” I have often thought to myself. Indeed, I (as well as millions of other who live with chronic pain) have reached levels of pain that are beyond what the human body or mind are supposed to deal with…and if you haven’t been there yourself, no words or explanations will ever be able to truly describe exactly what it feels like.
But if ever there were a “can’t” that should *immediately* be eliminated, it has to be this one…because no matter how bad the pain can get at times, I really have no other choice than to deal with it, as best I can.
I’ll admit, there are still times when “I can’t deal with this pain” starts to slip back into my thoughts. As soon as I recognize it, though, I immediately replace it with:
I can deal with this pain.
Whenever I affirm this to myself, I sometimes find myself chuckling lightly, laughing at (but not taunting) the idea that I could possibly not be in control of how I decide to react to the pain. Once I assert that I can indeed deal with the pain no matter how severe it is, I realize that, I–and not my pain–am in control. I am reminded that it is I who controls my thoughts and my actions.
My chronic pain will never stop trying to control my life. (This is its nature, after all.) I let it take control in the past, and suffered miserably. I can now honestly say that I will never let it take control again, no matter how challenging it gets.
Never underestimate the power of eliminating one “not.”
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
What advice would you give to someone who has just been diagnosed with RA?
Don’t be discouraged, overwhelmed, or pressured by your new diagnosis. And don’t let RA keep you from having fun, you can make it!
Do you use any mobility aids?
When flare-ups are bad, I do have to use a cane in the mornings to get around. I’m constantly trying to stay away from stairs as they are my hardest obstacle!
How has living with RA helped to improve your life?
So far, I’m still learning to handle my rheumatoid arthritis. It started off mild and has now grown to severe. On a positive note, it has taught me to be appreciative of what I can do and not discouraged by what I CAN’T do.
Do you have any visible signs of RA?
I have a chronically swollen right knee after having surgery two years ago for removing a (luckily) benign tumor, my scar is 5 inches long. I also walk with a noticeable limp some days and recently me left elbow hasn’t been able to straighten completely, so I have to keep it bent most of the day.
Can you please describe some of your favorite coping strategies for living with RA?
I pray every day, read my bible, and put my trust in God. He’s the author of my life and I know despite my illness, I’m in His hands.
Can you please describe your current medical (traditional and alternative) treatments?
I’ve been pressured countless times to get back on methotrexate and enbrel, but I’m highly uncomfortable with their side effects in the long run. I’m taking a natural approach by starting a healthy, lean diet, there’s a ton of research on foods to stay away from, and using a long list of natural vitamins and herbs to help reduce inflammation and even pain.
Is there anything else about yourself that you would like to share?
I’ve been blessed to have a great support group around me, I’ve got a wonderful (new) husband who takes amazing care of me, and great family and friends that are always encouraging and offering advice. Very thankful for that!
After a couple of relatively symptom-free weeks, my rhuematoid arthritis is once again knocking me down. Today I didn’t get out of bed until around 1:00 p.m. Even then, I did’t much get past first gear…although I am proud to say that even as my day passed by in slow-motion, I was able to make it into the kitchen to cook dinner.
I find it interesting how nowadays, whenenever my RA starts to get the upperhand, I don’t have many of the thoughts that used to be have for so many years. No telling myself that I need to be doing something other than resting (or sleeping) in bed. No sadness about the fact that I live with the pain and disability on a daily basis. No fear about what might happen if things continue to get “worse.” Most importantly, no self-blame and no doubt; no wondering what I might have done to “cause” this flare. (I’ve gotten really good with the pacing and with not pushing myself too hard.)
This disease is hard enough, without my being hard on myself emotionally. So when my RA knocks me down, without so much as a second thought I start doing what I need to do in order to pick myself back up…and even though some people may find sadness (I know I used to) in the repetitive nature of what can often seem to be a “two steps forward one step back” type of life (or “one step forward two steps back,” when things are really critical), I’ve learned to appreciate even the beauty of these moments. First, because I’ve done it before and I know I can do it again. Second, because even though it may seem to be the same routine, each time around I make it a point to learn something new.
When I am stuck in bed, unable to even roll over, I no longer think about how much of my day I have “lost.” Even in this situation, whether I am sleeping or lost in my thoughts as my body deals with its temporary paralysis, I am not losing out on life…because this is my life.
Even though I will often say that I am having a good” day, I rarely ever try to tell myself that I am having a bad day. Now this isn’t to say that on more days than not, as was the case this morning, I awake to a body that is not working (in the traditional sense)…but I’ve learned that if, during these early hours of the day, I label it as a bad”day, then it will, well, stay bad all day long.
Because when I label my day as being bad, doing so leaves me feeling powerless in so many way. It will be just another bad day, and I will indeed feel like I am losing out on life.
But if I say that it is a challenging or a rough day, then I feel capable of doing something to change–as much as possible–the situation that I find myself in at any given moment. This allows me to accomplish what I pledged here on my blog when I first started writing so many years ago, which was that I would try to make my emotional well-being less dependent upon the absence or presence of pain in my body. (And which, I am proud to say, I have been quite successful in accomplishing, even as my rheumatoid arthritis continues to progress.)
When it comes to living with chronic pain, if I wait until the pain goes away before I permit myself to have a “good” day, then I might be waiting forever.
Which is why, no matter how much pain I’m in, no matter how much I am unable to move my body–without denying in any way, physically or emotionally, what is going on–I remind myself of two things:
1. This is my life.
2. Today is a good day.
Yes, I continue to get knocked down…I have no doubt though, of my ability to continue to pick myself back up.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!