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.

Observations from Camp Randall: UW v. Michigan 11/14/09

Last Saturday's game against Michigan (a 45-24 throttling of the Wolverines) was the Badger's final home game of the season, and just like that another Fall of good times, not to mention interesting adventures going to and from my seats on game days, comes to a close. I will be taking a trip down to Madison to see the Hockey Classic at Camp Randall in February, but I won't be sitting in my stadium seats again until Fall 2010. The season always seems so long at the onset, but then when I leave the stadium for the very last time near Thanksgiving I always wonder how it seemed to pass by so quickly. Sigh. Onto the final 2009 installment of Observation from Camp Randall:

Observation #1: The tailgate is in full swing. I took my good buddy Ryan. My rehab nurse from 1996, who I've stayed in contact with over the years, was in town for the game and her and her husband had just stopped by. Another good buddy and fellow Badger superfan John, who I hadn't seen in over a year, had just stopped by. Cold beverages and friendly conversation was in high gear. Then out of the blue a gentleman in his mid-sixties butts in, explains that he and his sick wife, who he points out is sitting across the street on a bus stop bench taking a rest, are on the way into the game, and he was wondering if he couldn't score a few beers from us if we had any to spare. As he started to pull out his wallet to pay for them we all did a collective "Huh?" Ryan grabbed one, told him it would be no cost, and that since his wife was sick she probably didn't need one herself. He thanked us, muttered something about if we ever stopped by his station that we were good in his book, then disappeared. Only outside Camp Randall Stadium on a Badger football game day would something like that happen. And that in such an atmosphere your only true reaction is to just shrug and carry on with the tailgate action.

Observation #2: I took the picture below to further take people along my path into the stadium and up the elevator. In a previous post I took a picture of the line out the door and noted that the room with the elevator was up to the right. This is that room. The elevator is to the left below that TV. One person in a wheelchair was in front of me at this point.

Observation #3: The guy to the right in the picture below is the guy who manned the elevator all season long. I call him "The Captain" because he always wore that silly looking captain-esque hat. As I was snapping this pic an able-bodied couple behind me asked The Captain which elevator level they get off on to get to their seats. There's always a bit of confusion about that because nothing inside or outside the elevator clearly marks which seat sections coincide with what elevator level. Heck, it took me until this season to know with confidence that I was going to Section 5. Anyway, the following exchange occurred:

Able-bodied guy: What level do these seats go to?

The Captain: What section?

Able-bodied guy: WC.

The Captain: WC? Yeah, that's the wheelchair section, Level 5.

Able-bodied guy: Thanks.

Apparently, it was lost on everyone but me that the able-bodied couple who planned to sit in the wheelchair section but didn't use a wheelchair probably didn't need to ride on the elevator. That was pretty much a succinct anecdotal summation on the way the whole elevator thing went this year: seemingly everyone was allowed to use the elevator despite it technically being reserved for patrons with disabilities. That said, as far as I'm concerned The Captain needs to get himself a Tennille, a piano keyboard, and change professions because he was not very good at properly managing an elevator designed to give priority to people with disabilities. I still shake my head about when he told me there was no more room on the cart for a wheelchair earlier in the season. Hello?

Observation #4: This guy. That's all that needs to be said I think. He was wearing a head to toe plaid leisure suit and matching corduroy hat. To a Badger football game. Fantastic. He stood next to me for the better part of the third quarter and finally I just couldn't help but snap a pic because I was so blown away by his threads: easily the craziest looking outfit (student section aside) that I've ever seen anyone wear to a game in eleven years of having season tickets. And I live in a state where people wear blaze orange hunting garb to the stadium when it gets cold out.

Occasional access and frequent elevator woes aside, it was still another fine season of Wisconsin Badger football at Camp Randall Stadium this year. Lot's of awesome football was played, lot's of big team wins, and lot's of fun was had. I already can't wait until the first game next year!

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

A good friend of mine sent me the picture below. It's from a website that I was already familiar with called Fail Blog, which essentially posts interesting pictures and videos where people, products, etc. have "failed." From what I've seen on the site so far, I would say that "failing" to get a clue would probably describe things the most accurately. The picture below is a great representation of that notion. As you can see, it shows that the Wheelchair Foundation building is at the top of a set of stairs. Of course it's likely that there are ramps just outside the view of this picture, but if you take it for face value the prospect of stair only access to a building that presumably caters to people in wheelchairs is pretty intriguing. An "epic fail" according to the site's parlance.

Beware the Rehab Doc Part III.A. (The Surprising Results)

Ok so here we finally go with the two-part conclusion to what I’ve decided to start calling my Beware the Rehab Doc "Trilogy." (It took longer to put together than I planned.) And a bit of a surprising conclusion it is, I might add. To quickly summarize, a few months ago I originally sought a consultation with a rehab doctor who specializes in spinal cord injuries to, in part, get a medical OK to be able to add the use of an FES bike to my workout routine (see Part I). Getting that OK meant having to get a bone mineral density (BMD) scan of my hips and lower spine – an adventure (or misadventure rather) that I explored in great detail in Part II – to make sure that my hip joints still had enough bone strength to execute the repeated bicycle motions necessary to reap the FES bike’s benefits.

The morning of my follow up appointment I found myself a little nervous about the BMD scan results, but on the whole I was quietly confident that nothing major would be revealed. I say quiet confidence because after thirteen years of living with a spinal cord injury, with all the intertwined health issues that come into play, I have learned that there is really no such thing as being cocky about your body’s overall health. Unexpected things arise all the time.

Still, unlike plenty of people with spinal cord injuries who don’t live carefully (e.g. “I can’t feel my legs anyway so what do I care if I sit too close to the campfire?”), and ultimately even trash their bodies (almost irreparably) as a result, I have thus far avoided all the typical major pitfalls that can arise with this particular disability’s lifestyle. For example, I have never recklessly thrown my body around. I have never had any bed sores or skin breakdown issues. I have never had issues with urinary tract infections, which is a common problem with SCI folks when catheters, etc. are frequently involved for personal “plumbing.” In fact, it wasn’t too many years ago that I had an ultrasound technician tell me that my kidneys were so beautiful that they were worthy of being pictured in a medical textbook. You can no doubt thank all of the water that I’ve frequently consumed over the years for that. (Don’t mind me, I'm just trying to further justify dedicating a handful of detailed paragraphs to my urine output in the previous post). What else? No major blood clots or circulatory issues. No flu or pneumonia things that have affected my respiratory system. All things considered I’ve pretty much always been in tip top healthy condition overall.

But my quiet confidence fizzled down stomach punching reservation the second the doctor stepped into the exam room. I’ve always had a pretty good intuition about reading people’s body language and the way she politely squeezed through the door, gave me a limp handshake, and a quick sympathetic grin before she sat down shot a few red flags into the air. With little hesitation she said, “So I have your bone density scan here, do you want to hear the results?” Up until then I planned to be cute and say something like “Only if it’s good news.” But based on all that mentioned just above I just cut to the chase and said, “That’s what I'm here for.”

The highly unfortunate punch line is that the scan revealed that I have severe osteoporosis in both of my hips. The way that she broke it down for me is that on the BMD scale anything above 0 or 1 (I forget which) is considered normal bone mineral density. Anything from 1 or 0 down to minus 2.5 puts you in the osteopenia range, because your BMD is below peak BMD. Having osteopenia is not great but not necessarily overly bad either. Anything south of minus 2.5 puts you squarely in the osteoporosis camp. As of the day of my scan both of my hips were well below minus 4. Thus the “severe” in severe osteoporosis. What that means is that my body is at a high risk of hip fracture resulting from something jarring, like a drop.

So obviously my head was swimming with various thoughts when she read me my verdict. My first question was what did I do to bring this on? She said that simply sitting in a wheelchair for thirteen years did it. It’s a very common thing with people with spinal cord injuries. She explained that regularly putting and keeping weight on the hip joints through walking and standing keeps the hip bone material growing and built up. When that regular walking/standing slows significantly or stops then bone breakdown begins.

My next thought went to my EasyStand standing machine, which is a piece of rehab equipment that allows me to hydraulically pump myself up to a standing position. Specifically, how I didn’t use it as much as I wanted to, and how much I probably should have, over the twelve or so years that I’ve had it. After all, take special note of the Medical Benefits of Standing numbers 1, 2, 4, 10, and 12 in this link. I’ve used it about every other day for about an hour for the last five years at my apartment, but there was easily a six plus year stretch before I moved to Minneapolis for law school where I barely used it all. The primary problem was that it was hard to get into a regular pattern like I have now, doing it in the morning while I eat breakfast and watch SportsCenter. Had I used it much more often would my hips be as trashed? The quick answer was no, and that had I actually used it much more often than I did it would have only staved off the bone density loss to a small degree. The not walking and standing thing was the key factor with this particular ordeal.

The thing that really threw me for a loop, however, was when out of my own illustrative curiosity I asked her to ballpark how "old" my hips are as applied to a normal person’s life arc. She said it's hard to say for sure but if she had to throw a dart she would say that I have the hips of a post-menopausal woman in her 80's. That bears repeating: as of the day of that BMD scan I have the hips of an eighty year-old. Post-menopausal. Woman. But it’s like, seriously?! At a healthy thirty years-old?! Absolutely flabbergasting. And it snapped the whole scenario into perspective for me.

Now like I said, I didn’t go into this thing naively, because I’ve been battle tested regarding unexpected medical prognoses. First of all, common sense dictated that there would be some bone density loss after not being able to walk for a number of years. Second, in this regard I had a bit of an early warning sign, a shot across the bow if you will, when I broke both of my feet one month apart from each other in the fall of my third year of law school (more on that another day possibly). After analyzing my X-ray the doctor mailed me a note that said “Diffuse demineralization is present” and then a line was drawn to a handwritten side note that said “bone loss probably related to being nonweight bearing.” Although that was a little hard to read at the time it made sense to me.

So before going in for the BMD scan results I had accepted that there would some form of bone density loss. But even with that being said, to say that I was flat out shocked to find out that I had osteoporosis, let alone severe osteoporosis, would be a huge understatement. The thought never even came close to crossing my mind. Even if just that morning I was joking a little bit with my PCA that based on other strange health news I’ve gotten over the years on account of my SCI that “I wouldn’t be surprised” if I found out that my hips were trashed after all these years. But I didn’t truly believe that, not even for a second.

And have any scintilla of a concern that my lower body bones were weakening? Come on. I mean I’m from Wisconsin, the Dairy State, and I worship at the altar of Kemp’s milk at least three times a day. Moreover, one of my theories as to why my diet hasn’t worked as well as I had hoped over the last year is because I just can’t seem to refrain from putting cheese on most things I eat: pizza, burgers, sandwiches, baked potatoes, salads, pasta, cheese and crackers at football tailgates, with vegetables to make them more bearable, etc. That said, with all things spinal cord injury disability related under consideration, the last thing I figured I ever had to worry about was the weakening of my bones or that I needed to take calcium supplements. But I guess milk doesn’t do a body good in all instances.

The bittersweet thing is that I'm still young enough that with the two medications the doctor prescribed (osteoporosis pills, mineral/vitamin/calcium combo supplement) she said that we can not only stop the deterioration of bone density but even start building it back up. At least that’s the goal. She said she's seen "80 year-old hips" in eighteen year-olds who had spinal cord injuries early in their youth and they were able to battle back and regain a lot of that bone density. Of course the only way to truly gauge the progress that my body is making in that regard is by doing BMD scans every six months for an indefinite period of time, possibly for the rest of my life. Judging from my frustratingly detailed account in Part II of this trilogy of everything involved with that exam you can imagine how happy I am about that. Especially now knowing that from this point forward any equipment failure that drops me would likely result in a hip fracture. Good times.

I’ll pick it up next time with my follow up thoughts and concluding remarks, before this post gets way too long.

But as long as I’m being quite candid already, I’d be remised at this point if I didn’t highly emphasize to any people with spinal cord injuries who might be reading this that you should get one of these bone mineral density scans done. Even if there are no signs that currently point towards you having lower spine or hip bone weakening issues, or no doctor has ever suggested it to you, I think it’s well worth inquiring about nonetheless. If you have paralysis that affects your lower limbs and you have mostly been sitting in a wheelchair for a number of years than it’s more likely than not that your hip bones have slowly been weakening in a similar fashion to mine. As I mentioned, with SCI it’s just the nature of the beast in a lot of cases, and I’m writing about in such detail to be overly poignant about that. You’re much better off getting ahead of osteoporosis issues and/or battling back before it’s too late or it could potentially have dire physical consequences down the road, which I’ll get into from my perspective next time.