Beware the Rehab Doc Part III.B. (Bringing it All Home)

Picking right up where I left off last time: When I left the rehab doctor’s office there was no question that I would head straight to the Target pharmacy to get my new octogenarian pills. Since the bone mineral density rebuilding process is seemingly at the mercy of my new meds, I wanted to kick things off as soon as possible. On the way there I had some quiet time to reflect on the appointment and let it all sink in a little more. It didn’t take too long for shock to turn into a bit of anger. Not anger over the situation mind you, but anger towards every doctor I've had up until now that never suggested doing a bone mineral density scan or prescribing me something to stave off bone loss. The doctors that I had in Eau Claire were mostly family physicians, and thereby not too experienced with all things spinal cord injury related, but they surely dealt with osteoporosis patients on a frequent basis. Common sense plus a little extra research might have revealed that it would be a good idea for a patient living with paralysis to have a hip bone scan, even if there never was anything at the time that pointed towards me having any bone density reduction. But most of my disappointment lies with the doctor I’ve been seeing in the cities for the past five plus years because he has over thirty years of experience in dealing with patients with SCI. That’s the main reason why I was referred to him. Thus I feel strongly that he should have known better about getting on this issue earlier. Although according to my new rehab doctor had we caught it earlier I still would have ultimately headed down this path of BMD breakdown due to the natural progression of living with an SCI. But even so, the bone density re-buildup process would already have commenced on account of starting the same prescription therapy years earlier. That’s the part that really bugs me.

While I waited for the prescriptions to get filled I found myself mindlessly sitting in that pharmacy aisle with the fish oil, flaxseed oil, slow dissolving iron tablets, over the counter osteoporosis related pills, and the other weird-ass meds that I swear I’ve never seen anyone ever shop for. Were these “old” pills next? The whole thirty-year-old-with-granny-hips thing still didn’t make sense considering that I was in the prime years of my life, had always taken good care of my body, and for the most part been the epitome of health, despite living with significant paralysis. Hard to wrap one’s mind around. But it’s just another one of the hidden and unknown aspects about living with SCI. Live and learn.

When I was leaving Target I immediately had two follow up thoughts about my appointment: First, we never even discussed the possibility of me using the FES bike, which was the whole reason I went through all that bone mineral density scan nonsense in the first place. But I think the overriding, unspoken implication was that my now considerably weakened hips were far from a good candidate for the FES, at least not until I build back up some more bone mass. Even then I doubt I’d be brave enough to try it out at any point in the future anyway.

Second, I wondered how it would affect having sex. And for the record yes quadriplegics can still have sex, with a few different intricacies here and there, just fine in many cases. Not that such an act has been anywhere near an issue for me for a much longer period of time in my life than I care to honestly admit to the blogosphere, but wouldn’t it be just my luck to finally land the smart, fun, beautiful, cool, open minded girl that I’ve been waiting years for and end up snapping a hip bone because we got a little too frisky, if not downright raucously amorous, one night. Granted, it would be a helluva a way to break a bone, and I’d no doubt be smiling all the way to the ER, but in all seriousness it’s possible that the physical consequences could ultimately be dire.

To wit, if I was to ever suffer a hip fracture it’s highly realistic that any or all of the following could occur: 1) An ambulance ride to the ER. The assumption here is that it wouldn’t be wise to get back into the wheelchair after the apparent break to drive myself to the hospital, unless I am somehow in the chair right afterwards (e.g. the break happens on the way back down into the chair after a bone mineral density scan). That’s no big deal, been there done that with the ambulance ride. The rest of the countdown gets more precarious though. 2) Staying bedridden for a considerable amount of time in both the hospital and my bedroom. At least I’d assume that would be the case while the fracture heals over a number of weeks. In my life I can only be sitting in a wheelchair (the vast majority of the time) or lying in bed. When you can’t walk or stand there’s really no in between. So in terms of healing a fracture in my case, at least in the short term, on the flat of my back in the bed is probably going to be the place where it will occur.

3) If I’m bedridden for any significant amount of time then that opens the door to the very likely possibility of acquiring bed sores or having other related skin breakdown issues due to the constant contact with the bed surface. That can be combated by repositioning from one’s back to both of their sides continuously every few hours so no part of their body is in prolonged contact with the bed. As it is right now I keep about a maximum of a seven hour per body positioning rule while in bed (mostly on my back or sides). But if the four to six week bone healing period requires that my hips stay flat then I don’t know how I’d combat pressure sores on my bottom side. And again, it was an open pressure sore that got badly infected that ultimately lead to Christopher Reeve’s death. Heck, even if they don’t get infected it takes a very long time to heal any sores of that kind on quadriplegics because 1) you have to somehow minimize further pressure to the area (e.g. by reducing the periods of wheelchair sitting time) and 2) due to the lack of normal blood circulation the body gets from walking, etc. wounds in paralyzed lower limbs often times don’t heal along a normal arc. For example, I’ve had pimples from ingrown hairs on my calf take over a week to fully heal. And I’m just talking about a small pimple. Factor in the potentially difficult issues of bathing, toileting, eating, etc. all while in bed and like I said, the aftermath of a hip break for a quadriplegic could range anywhere from highly frustrating to dire consequences.

So with some of that stuff possibly hanging over my head down the road (*knocking on wood) this unexpectedly becomes quite the interesting chapter of my life I’ve had to turn the page on recently. Not to mention frustrating and even a bit scary. I mean take a look at this picture and try and tell me that knowing this has been happening to your hips doesn’t freak you out.

Luckily, hardly anything I do is risky behavior to hip trauma. I was assured that the morning range of motion leg stretch/exercises I do in bed before I get dressed will not put my hips in any further harm. Although just the other weekend a new PCA took my leg “scissor” range of motion maneuver a little bit too far wide and I felt and heard a small pop in my left hip. That made me snap out of my morning grogginess pretty quick. So I’ll have to keep that situation in check. Transferring in and out of the wheelchair should be just fine too. The only out of chair transfers I do involve getting in and out of bed, on and off my shower chair, and on and off my standing machine. Those are all pretty secure transfers. I’ve done the occasional transfer in and out of people’s cars in the past but that situation has rarely presented itself over the last seven years or so. Continuing to stand on my standing machine will be still be ok, if not helpful I’m told. So by continuing to lead a similar less physically risky lifestyle I should be in pretty good shape overall as far as staving off the risk of drops or other hip trauma that might lead to bone breaks.

But the harder hurdle to leap with this osteoporosis discovery has been the mental one so far. I’ve always been very conscientious about keeping my body in as healthy position as possible to be ready for the ever elusive cure for paralysis, and ergo a solid shot at returning all of my physical functionality and hopefully regaining the ability to walk along with it. But this situation has presented me with the first real proof that due to living all these years with my spinal cord injury my body is breaking down in certain areas. To that point, it’s quite daunting to now be at the mercy of two medications to restore the lost bone mineral density loss and stave off the now much higher likelihood of bone fractures in my hips, let alone the potential ability to walk again someday. It tends to make the latter notion much less likely at this point. (Although at this point simply regaining full hand and finger function would drastically improve the overall quality of my life.)

It reminds me of a meeting I had somewhere along the way about eight or nine years ago with a caseworker who was a quadriplegic similar in level of injury to mine. As always tends to be the case, we got to talking shop about how we came by our spinal cord injuries, what level of injury we were, sharing comparative old war stories on many aspects of the lifestyle, etc. At a certain point in the conversation he declared quite emphatically that even if a cure for paralysis was invented the next day he was never going to walk again. The proof to his argument was the fact that he had been in his wheelchair for a number of years and as a result his muscles had atrophied too much and his bone density had dropped off too far to withstand the rigors of carrying his body weight in an upright position. At the time I remember feeling like this guy had a defeatist attitude and that even though he made some pretty physiologically accurate points that he just had too negative of a life outlook. Flash forward to the thirteenth year of being in a wheelchair along with the discovery that I have severe osteoporosis in my hips and I feel like I can suddenly see the world from his view a lot more. So like I said, it’s a rough mental hurdle to leap.

Regardless, I’ll no doubt deal with this new life wrinkle the same way I’ve dealt with everything related to this SCI disability lifestyle, from my accident forward: with a mostly positive, forward thinking, ‘life is 10% what happens to you and 90% how you react to it’ theory on life. In other words, why sit around and dwell on what I can’t do and things outside my control? But damn if isn’t hard to stay perpetually sanguine when you get hit with physical and emotional setbacks like this: finding out that you might be living with a pretty serious bone disease for the rest of your life. Pretty big blow to the psyche. But I guess that’s just when you have to channel your inner Journey “Don’t Stop Believin” even more than before, which incidentally has been a much more frequent song list play on my iPod since that fateful rehab doc scan results appointment.

So for those keeping score at home, beware the rehab doc because: you might find out that you’re more disabled than you originally thought, you might need a bone mineral density scan, you might need to get belt/basket lifted up like a human jockstrap just to have said BMD scan taken, you might have to collect and tote about 2.5 gallons of your own urine to the hospital lab, you might need your blood drawn, and finally, when it’s all said and done you might find out that you have severe osteoporosis in both of your hips. But coping with it all with as good a sense of humor as possible? Priceless.

Now if you’ll excuse me, my eighty year old post-menopausal granny hips and I are fixing to score an ice-cold Ensure and go knit a bitchin’ throw rug.