Isn’t That For Those Disabled People
So I had two days of decreased leg and back pain (coming in around a 3+ to 4) in succession (I also didn’t feel much like passing out which has been lovely; I’ll take it whenever I can get it!), and then yesterday afternoon and evening I was back to really hurting (6), most likely because of the rain and thunderstorms.
These ups and downs sure do play with my mind, and it really makes considering an SCS all the more challenging. When I feel “better,” which I’d say is a pain scale rating of 3-4 (still far from great, but beggars can’t be choosers), I’m hesitant to do anything that has risks which could leave me worse off for attempting to get out of the pain. Living at a level of consistent 5’s and up? Oh yeah, I’m in for some big time pain relief, risks included. As summer has arrived and my pain levels are trending upwards again, my desire for relief intensifies.
Yet what to do when intense pain is punctuated by these short stints of moderate pain? Does that mean there’s hope that my pain could be better managed in some less invasive way? Drugs don’t seem to be the answer, as they’re all messing up my gut and increasing my visceral hypersensitivity in unwelcome ways that I cannot control. Nerve ablations and nerve blocks either seem too ineffective or too risky (especially given the ineffectiveness). And ketamine flew the coop as well. For that matter, I wouldn’t be a good candidate for an SCS until all of these previous therapies had essentially failed. It’s like the kids in the back seat repeatedly asking “are we there yet?” Well yes, yes we are kids. For better or for worse, yes we are.
When these short stints of downgraded pain come, I keep wondering if my CRPS at least would fade into “remission”. My thoughts are a bit double-edged on this account. While my pain does ebb and flow and I’ve had times when it’s been a consistent 7+ (very intense to utterly horrible) for weeks to months on end, there have been a few times when it’s seemed to stay at a 3-4 (tolerable to distressing) for weeks to months. During all of these times I do still have to manage my gut pain (ranging 0-8) which I’m not including in the pain scale numbers for CRPS just quoted, as it moves independently of CRPS. I realize that in the last few years especially my pain trend has worsened and that, unchecked, it’s general trajectory is not positive. Now I did steadily improve for about 8 months in 2012 – I was moving better than I had for several years, but it came to a crashing halt-of-a-flareup on December 2nd and since then my body hasn’t been the same; I’ve hit new levels of pain and have now had these increased levels for nearly as long as I had decreasing levels in 2012. So is this bound to be my “new normal”? The answer to this question significantly impacts my answer as to how aggressively I want to treat this, what levels of risk I’m willing to accept.
My Mom also happens to have CRPS. While mine developed in 2001, hers came about from mastectomy surgery in early 2010. She’s had the worst of it in her right arm from the surgery though she developed it in her legs too when she had multiple foot operations in 2012 and 2013. She’s had a whole bunch of surgeries in the last few years. But now she’s able to hike several miles in a day, go shopping, go outside in various temperatures (though this can cause her arm to hurt more), and sometimes do multiple things like this in just one day, which is something I’ll likely only ever dream of doing again even if my pain can be better mitigated. Her RSD/CRPS in her legs has mostly gone into remission. It hasn’t in her right arm, however. She still has it significantly there and it limits her daily. I keep wanting to think that maybe, like my Mom, I’ll hit that remission in my legs. Yet the truth is my body isn’t my Mom’s body. She’s only had CRPS for a short time, but for me it’s been over 10 years and the CRPS has changed my brain; we caught it too late and I didn’t have treatment to prevent it from becoming as bad as it now is. So we really are working from two opposite ends of the spectrum, with different bodies, and though we’re related our chances of reaching remission couldn’t be more opposite. If I thought remission were a realistic possibility for me, it again would be silly to take the plunge on getting an SCS. I guess if my doctors had thought remission was possible or likely in my case, they would have told me so? They would be doing nerve blocks and saying an SCS was down the road – “we’re not there yet, kid”.
The weather for the next 7 days is supposed to be pretty brutal – rain, thunderstorms, and temps in the 90’s. After a week of that, I may be all the more motivated to sign on the dotted line.
But there’s still this thing inside me that just can’t connect with the idea that an SCS may be for me. It’s kind of like buying a new pair of crutches. Part of me knows I need them (they wear out after a few years of heavy use), that I can’t get along without them. And yet when I go to buy them and see pictures of people – DISABLED PEOPLE – using them…it feels so final that *I* am getting those crutches for those disabled people. I’m not buying the kind of underarm crutches the teenagers use after they break their ankle from skateboarding off the roof at night in the rain; I’m buying the forearm kind that typically only really “disabled” people (in the US) use. So buying new crutches is a fresh confirmation of what I’d like not to admit – that I’m disabled. I know this sounds ridiculous. 🙂 I mean, my friends are cool with me using whatever I’ve got to use to do what I need to do. They get it. It’s the voices in my head and some people from my past that question me. A combination of the voice that questions if the pain is in my head and if I’m losing my mind and the voice that says I need to suck it up and not allow my challenges to be a crutch…to keep going like it isn’t there because if I give in, it will take over. Perhaps that’s why I work myself to the bone constantly. I’m afraid the weakness will take over if I don’t. Hmmm.
Seriously, this is stupid. Yet I go through it again and again. With my wheelchair, with my crutches, with various other things that show signs of disability. For the longest time I bucked against applying for SSDI because I wanted to keep going. I work my job now, perhaps in part, to prove that I’m not disabled (obviously that doesn’t prove it to anyone else but myself in my own weird way). My wheelchair – I finally got an ultralight wheelchair after ripping my shoulders out for several years kicking around those heavy old hospital wheelchairs and pulling my back out trying to get them in and out of my car – and to do so I had to accept my need of said wheelchair. Now if you think forearm crutches look “disabled,” I can tell you that among the mobility challenged, an ultralight wheelchair tends to scream “Spinal Cord Injury,” which I do not have (thank God). And I can’t tell you how many times I feel like I shouldn’t have a wheelchair, but it’s not from a physical perspective…it’s all mental. My body knows I downright need all of the above, and I can tell you logically the list of reasons why my body needs all of the above, but my emotional brain still doesn’t want to accept that.
And so it is with Spinal Cord Stimulators. I keep reserving them for “those people who are REALLY disabled” as if I’m not. You know, “those people who are in so much pain they often cannot function as they desire (dis-abled), their pain is chronic, there are no other treatment options left for them, and this has a shot at really improving their quality of life”. Oh, wait, that sounds a whole lot like ME. Ouch. See what I mean? I don’t emotionally-mentally fit myself into that boat, at least not as easily as I think those who know me would tend to lump me there because they have no particular emotional attachment to the assigned category.
I almost feel a strange sense of guilt for contemplating an SCS. Just because…I guess I feel like I’m not “one of those disabled people”. Weird how we perceive things, isn’t it? Besides, I can’t stick cool stickers on an SCS that’s inside my body like I can stick stickers on my crutches or put those flashing disco lights under my wheelchair (oh yes I did! – ask me to give you a demo!) for all those non-dance, non-clubbing nights I enjoy alone at home. LOL.
Hmm, PERSPECTIVE. Maybe AB people (able-bodied, for those who don’t know dis’ culture lingo) perceive me as “severely disabled” because they aren’t used to seeing wheelchairs everyday or someone who at 29 can’t do the many things they take for granted. Maybe I, because I grew up around people who had challenges of all shapes and sizes and never really shrank back from befriending and becoming accustomed with the challenges of those who are severely disabled, have an oppositely distorted perception. As a medical practitioner, I became used to seeing folks who are bedridden, taking huge amounts of narcotics and controlled substances, whose pain seemed both so intractable and so high (8-10+) daily and who legitimately were more disabled than myself. Therefore I see myself as “moderately disabled” while others looking at me from the outside may see me as “severely disabled”. So who is right? I’m not sure there is a “right or wrong” here; realizing that there are multiple ways to perceive this issue gives me a sense of freedom in my own interpretation while I also have freedom to respect the interpretations of others.
Do you also see the irony here? I want doctors to believe me when I say my physical symptoms are disabling, and yet I don’t want to admit it myself when you get down to the heart of it.
Ah, only God knows how it all works out in the end.