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!

Thought I would share I quote I love:

“If a fish is the movement of water embodied, given shape, then a cat is a diagram and pattern of subtle air.”
-Doris Lessing

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:)

I found this on one of my interest groups recently:

“Some people are just like slinkies – not very useful, but they bring a smile to your face when you push them down the stairs.”

The dentist’s appointment was mine - 10:30am to make sure all was well with the implants and take “brag photos” of how well-aligned everything is now

Both Toms handled today’s stress levels much better than I did! Tom III dealt with new data and reports (for the company which will lay him off at the end of this month!) and surfed the Net before donning company-casual attire and leaving for his second face-to-face interview with sample charts/graphs/reports in hand. Thomas kept himself well occupied with projects in his studio all day, waiting for the “You’re hired” phone call which didn’t come. I prayed, wished, hoped and couldn’t concentrate on anything at all constructive , all day long!

The tension eased a bit once T III returned. He is IN, and is now waiting for the official offer and contract (plus security review) from Human Resources. He also brought home news that Thomas is listed for hire, as soon as HR can wade through some of their back-log. We’ll all feel better when he’s “official” too!

“Interesting” (read stressful) day! Tom III and I made the now-somewhat-familiar trek to Houston to see his two eye specialists. The pressure in his left (injured) eye is quite low, so the Pred Forte drops are now every two hours (when awake). We both caught a swiftly passing reference to a multisyllabic
“syndrome”, so both iPhones were doing research while waiting for the Retinologist to return to the room; I couldn’t even begin to spell it now, but the short version is that the left eye is showing signs of shrinking. Not good, but not a huge surprise either. Maybe the shrinkage will stop. . .maybe he will lose that eye. . .either way, we will know we have done everything possible.