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!

I’ve had an extended & frustrating period of requiring excessively long ‘rest periods’ for every chore accomplished; washing and hanging up the laundry would take all available energy, watering all of the outdoor plants left me exhausted, necessary attempts at taming household clutter meant someone else was cooking dinner. Not surprising, I suppose, as rheumatoid arthritis and fibromyalgia both pack a big fatigue punch, and the air pressure(a big trigger for me) has been dancing a ballet for weeks!

Finally, though,I’ve had a weekend during which I really accomplished something . . . more precisely, more then one “something”! Trimmed my e-mail down from 100+ to 4 by actually reading, responding and/or copying and filing recipes, patterns for miniatures, etc. Accomplished the two-week food shopping with Tom’s help. Gave all the plants a cleanup and hearty drink (still need to feed them!), and even managed to spend a productive period up in my “Tower” workroom! I didn’t create any masterpieces, but it was extremely satisfying to convert three long-stored kits into finished miniatures and solve a visibility problem within my newly remodeled Cabbages & Kings antique shop! I hope this trend lasts a while - I’ve sooo many projects I want to complete!

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!

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!

The surgical bandages have been on my feet since October 30th. I got a very brief peek at the surgeon’s work late that afternoon, when both incisions sprung a leak and the PA had to redo the dressings, but it hasn’t helped me to answer the standard questions which have popped up over the past two weeks; questions like. . . .”Why does it hurt way up there?”, “Is that a staple poking at me?”, “Are they healing well?” and “What do they Look Like!?”

Today was “answer day” (and my first time out of the house since Nov. 1st!) - time for the big reveal and answers to the questions. In short: 1) It hurts there because the incisions are longer than I envisioned (about 23 stitches in one foot & 22 stitches in the other). 2) Despite the fact the surgeon said “staples” while briefing DH after surgery, no staples were used. 3) Despite the surgeon’s conviction that I was a very bad candidate for proper healing (because of the Enbrel therapy), I am healing very well, thank-you-very-much! He was surprised, and I sort of had to rub it in a bit