This is mostly a rant about two months of terrific pain and disability.
March and April of 2018 were terrible. No other way to put it. Anything other than lying flat on my back in bed hurt. If I had to go out -- mainly to keep doctor appointments -- I had "Tylenol #3" with codeine from my internist, and that helped a little. But since it was also terribly constipating -- another source of pain -- I only used it for these painful doctor visits. I was afraid to try anything stronger that would interfere with my cognition or be more addictive.
I found two meal services that delivered reasonably healthful meals in what I would call upscale MRE's that I could eat right from their packages. I would hobble to the kitchen and bring one back to bed to eat without heating, lying flat on my back.
Lying perfectly still, flat on my back, was the only comfortable position I could find, I was grateful to have that!
The simplest self-care tasks such as going to the bathroom or brushing my teeth were hellish. Tying my shoes was nearly impossible. To go to medical appointments I wore slip-on shoes that frightened me to wear as I was afraid of falling.
Luckily my condo building has a wonderful staff, and, armed with an iPad Mini with a hand strap that I could use while flat on my back, I could use Amazon and Instacart (an online grocery service) for filling daily needs, and someone from the building would put these food boxes in my apartment. And luckily as well, my medical appointments entailed reasonably short taxi rides (although getting in and out of cars was very painful.)
I engaged help three hours a week for light housekeeping including vacuuming, changing bed sheets and doing laundry in the building washing machines, tasks I normally did myself but could no longer manage. Bending or lifting more than about 10 lbs. was out of the question.
In an effort to avert further bone loss as much as I could, I exercised for about 20 minutes daily by marching around the living room to Sousa marches before falling aching exhausted into bed for the rest of the day.
Spring was in full bloom, and after a few weeks I went for a short daily walk with the cane that had belonged to my mother. Using a cane helped with curbs and rough places in the pavement and, since I could not walk very fast, signaled to cars at stop streets as well.
As to clothing, anything that touched my now swollen and very tender mid-section hurt, so at home I mostly wore a nightgown. Dressing was painful but to go outdoors or make painful medical visits I needed something more.
None of my clothes worked. As noted, anything around my mid-section hurt like hell. Also, I found I needed some support if I were to be sitting or standing for more than a few minutes. My body shape had changed drastically. I looked like an 81 year old "Miracle Mom" with my remarkably large "baby belly" (which I later learned was from a combination of inflammation and also from my gut with no place else to go when my height decreased because of the vertebral compression fractures).
Also, at least when going out, I was more comfortable with some support. I ordered a few corsets from Amazon - the kind intended for postpartum women - that helped somewhat in keeping my mid-section stable if I had to leave the house. But these added to my already amplified girth.
My enlarged middle was noticeable even though I had lost nearly 20 pounds over the first few weeks of this situation. I did not seem to be able to eat as much at one time, perhaps because I now had less interior space for my stomach. Also, I quickly became breathless. Perhaps this was from lack of activity, but also perhaps because my lung capacity may have decreased with my height.
So clothing became an issue for me! First, I made a "maternity" T-Shirt for myself at Cafe Press with the words "Ask me about my Prolia Belly" and a downward pointing arrow. (Even at this point I knew I needed to warn others, and indeed, this shirt started conversations!)
Next, at Amazon, I found inexpensive and comfortable "yoga pants" made of lightweight rayon with wide, softly elasticized mid sections that didn't bind and with elastic around the ankles so I wouldn't catch my feet and fall.
Topped with an extra large t-shirt such as my new "maternity" shirt I hoped I looked like I was on my way to a Yoga class.
Here I am "all suited up" for a visit to the doctor. Note my crookedy shape. More about this later.
One doctor to whom I'd complained that I thought this shirt was defective answered "It isn't the shirt!" And as this picture shows, it clearly wasn't! As my bones healed, my slight spinal curvature had intensified greatly, and getting that under control was one of my goals in physical therapy as well. So I'm working hard with a physical therapist to correct this as well as to strengthen my core.
I tried to hold on to my sense of humor as I shuttled between medical appointments. This included Dr. B. at the U of C who gave me a Prolia injection immediately after the MRI showed the broken bones (after the cow had left the barn, in other words) and also ordered a DEXA screen (which actually might have looked improved since my fractured bones were more compressed), and also the pain clinic doctors, and some other medical professionals helping with what I hoped would be some kind of recovery.
Managing Pain
It was a bit of a "Lady and Tiger" situation which I found frightening, because while these surgeries must be done before the bones heal, there is also a great likelihood that you will get equally good pain relief without these surgeries (although you will be shorter and perhaps misshapen). On the other hand, the surgeries themselves -- while they seem to help some people -- can also wind up leaving you in more pain. So in my mind, at least, it was a "damned if you do, damned if you don't" situation.
My general inclination was to try to avoid surgery, especially surgery like this with a dicey track record and no possibility of reversing the damage if they if it did more harm than good.
Therefore I was relieved when the U. of C. Pain Clinic doc (the only doc so far who had really examined my back carefully, inch by inch, as well as going over the actual MRI with me and calling for additional x-rays as well) told me that because of the location and characteristics of the pain I was experiencing, he did not believe any of these surgeries would be likely to help me anyway.
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| Like this Little Girl, I Didn't Want A Cement Balloon! |
But for the most part I've had to rely on my own resources to fashion what I hope will be a good rehabilitation program. Unlike the signs in antique china shops, the adage "you break it, you bought it" did not apply to either Amgen or the U. of C. in this case!
Nothing More from Conventional Medicine
In fact - beyond these surgeries - neither the U. of C. nor Northwestern had anything more to offer.
I'll leave for another post the question as to whether or not to continue on Prolia or another drug for osteoporosis -- but it was clear that for my healing process, now that I was nearly immobile and in a great deal of pain much the time, I would almost totally on why own as far as conventional medicine was concerned.
And having been thus seduced and abandoned, as noted earlier, I turned to alternative resources to be discussed in forthcoming posts.