The Blackburn Digest

Got really shaky/wobbly while trying to get ready for my appointment with the neurologist this morning. Not just my legs, but my arms, too. (Not for the first time.)

I have a diagnosis. MRI showed moderate osteoporosis at the base of the spine (which the daily Forteo injections I just started should help correct). The nerve conductivity study at my first visit showed some neuropathy and muscle weakness. Extensive bloodwork done at my last visit shows “remarkably good levels” (for a long-term RA patient) of various usefull cells, critical vitamins, minerals, etc. Wonderful. The tests ruled out a lot of ‘nasties’ (Multiple Sclerosis, among others) - Great. Diagnosis: Vasculitis, caused by the years of RA. My veins/capillaries & arteries have become inflamed and restricted; hence the frequent wobblies when I walk and the increasing shakiness of my hands and arms, plus the occasional difficulty breathing. Reduced blood flow=reduced oxygen & slower nerve impulses. The bad news is that there’s nothing we can do about it. . . .my next appointment with him is a year away:( Meanwhile, I will have to get serious about doing the exercises to (hopefully) improve the muscle tone in my legs. The sudden falls on uneven (or even) terrain? Yeah, that’s probably here to stay, unless I slow down to a snail’s pace or delete several of my chores - - - neither is likely to happen in the near future!

While surfing through an over-abundance of e-mail, Facebook posts and Twitters today, I encountered an absolute gem! For anyone who is dealing with a chronic illness and constant pain &/or fatigue, you know how difficult it is to explain to friends & employers (sometimes even family members) what you are experiencing, especially if you don’t “look sick”.
The-Spoon-Theory,written by Christine Miserandino is a *Must Read*, an absolutely brilliant analogy of what daily life is like - not only for those individuals coping with Lupus (as the author of the theory is), but also Rheumatoid Arthritis, Fibromyalgia, Lyme Disease and a host of other illnesses!

Preface: I haven’t added an entry to BlackburnDigest since May 2nd! I’ve had good intentions (but we all know which road they pave!) I’ve even tried to keep a notebook of “bloggables”, so that I could bridge the gap ’someday’…… maybe, by the time anyone happens to read this, the May-to-August gap won’t be there; I’ll have taken my notes in hand and filled in a few blanks. Today’s laugh just refuses to sit quietly and wait its turn, however!

Thomas’ (T IV’s) Mustang has been patiently waiting for his financial picture to improve enough for him to take “Betty” to the Ford dealership for her overdue routine maintenance (oil & filter changes, tire rotation & balance, brake relining - all that fun-type stuff). Of course, all that TLC usually requires a few hours; time which is either whiled away in an exceedingly uncomfortable chair in an bleak waiting room, reading a thick book or your iPhone messages , or time spent relaxing or doing other chores at home because someone follows you to the dealership and ferries you home:)

Sometimes, I get the wicked urge to make an appointment with my former podiatrist. To just tell the scheduling clerk something banal like “I’m having trouble with callouses”, and then watch the podiatrist’s face when I unveil my new feet. O.K. - they’re not “new”. They are officially almost 15 months old, but the urge to use them as a “teaching tool” grows ever stronger!

It’s not the podiatrist’s fault. When years of Rheumatoid Arthritis had dislocated my toes and set them all at weird angles that shoes could no longer encase without severe pain, I sought her out. She was the daughter of a trusted physician, newly set up in practice with her surgery-schooled husband. I received sympathy, custom orthotics to ease my stride (which they didn’t) and, eventually, braces attached to both shoes with knee-cuffs to minimise my spectacular falls (which they did). Pain and mobility were still issues, however, so I kept pushing the young pair for a better fix. At my last visit to their office, I was told that the only solution was “drastic surgery” that “shouldn’t be considered until I was older”. That made little sense to me at the time (it was 2004 or 2005); if it was drastic surgery, shouldn’t we do it when I was younger and better able to recover? They wouldn’t answer that, so I didn’t visit them anymore!

I now have one less doctor on my “With whom/when?” appointment list. I wasn’t thrilled at the need for trekking across a fair amount of the city this morning to attend the post-op visit with my foot surgeon; the weather has turned freakin’ cold and WET the past few days. Wet is good. . . .wet is great, actually, as the Edwards Aquifer levels have been dropping near water-use restriction levels recently. In San Antonio, however, rain is best dealt with inside the safety of one’s own domicile. Our drivers seem blissfully unaware that a speeding car does not stop as quickly on rain-slick streets, nor does said car perform right-angle turns as obediently as it might in dry conditions. Coincidentally, they also are unaware that their cars (especially white & light blue ones) are much more visible in a heavy downpour if they Turn On Their Headlights. Sigh - with thunder rumbling and rain striking the roof, I was not happy to leave the house!

DH has been making frequent trips to the market for necessities since Oct. 30th, but we haven’t done a full food shopping since????? The pantry and refrigerator were looking quite bare, and DS will be here tomorrow for Thanksgiving dinner; it was definitely time to go to the market with a long list! My poor, much-loved Camaro hasn’t moved out of the driveway in nearly a month, so I asked DH if I could try driving to the store. . . .we needed its carrying capacity, and I could easily pull over and let him take the wheel if it hurt too much. I had an absolute blast! I’m not wearing shoes yet (that has to wait on additional healing plus the prosthetics), but I have my comfy/colorful socks and the protective post-op shoes/boots are comfortable. My feet are still tender, but accelerating and braking were just uncomfortable, not painful, and the feeling of regained freedom was exquisite. I used an electric cart to chase DH around the store, grinning like a fool the entire time. (Confession time - I bumped two stacked displays while trying to make the tight turns to transition from one aisle to the next - but only knocked one box off. I also ran right into DH’s butt once! LOL!)

Generally, I’m pretty tough; I was awake for the surgery and didn’t freak out when I heard the bone saw (probably fitted with a grinding disc, actually) start up, after all! Still, I know my limits. While monitoring the healing process (and trying to get adjusted to my “goose feet”), I’ve noticed a few facts about the stitches which were due to be removed today. Most obvious was the sheer number of them…..removal was going to take awhile. Also, they were very, very tight…someone (as it turned out, it was a nurse whom I like very much) was going to have to pull up rather firmly on each of them before they could cut them. The visible portion of many of the stitches was only barely-visible, being embedded in scabbing along the incision line…….hmm, that wasn’t going to feel good, either! OK - Tough, yes. . . .stupid, no - - -since DH was doing the driving and I’m still using the wheelchair when away from Casa Blackburn, I arrived at the doctor’s office fortified with pain medication, a muscle relaxant and a tranquilizer! It was still a thoroughly nasty procedure!