Posts Tagged ‘RA’

Lots of good will and maybe one small spill*

Saturday, October 9th, 2010

(* With apologies to Dolly Parton, lyricist & singer – “Best Little Whorehouse in Texas”)

SAS (San Antonio Shoemakers) hosted their 21st annual  Siesta Valley Ranch Walk today (10-9-2010, hosting thousands of participants at no fee.  T-shirts and a free bar-b-cue meal (with sides) await all those who arrive at the finish line. Participation in this event is a long- standing tradition in our Son-in-Law’s family; we were  introduced to this three mile (or six mile – hiker’s choice) walk/hike  through  beautiful ranch land in the Texas Hill Country three years ago. The vistas are gorgeous, the beautifully groomed horses make me ache to ride at least once more and the buffalo herd pastured along the walking course are simply majestic.  It is a working ranch, so the trails can be a bit rough, steep or rocky (or all three at once.) Also, as it is a working ranch, one needs to keep a sharp eye out for the cow patties while enjoying the cliff faces, valleys and lush green pastures , or face a good clean-up session 🙂

 My first ‘Ranch Walk’ (with Tom & Thomas,  joining three generations of Moores)  was o the 19th annual walk (2008) ~ for me, it was a blatant challenge to the double amputation surgery (already scheduled)    of all ten toes. All family members caravaned to the ranch (about 10 miles west of Medina, TX and started the walk together. I successfully completed the hike with my leg braces, cane and Tom’s sturdy arm, but I definitely slowed down the parade! 

2009 was the 20th Anniversary walk, and Tom III was the only Blackburn presence. Thomas was working an abysmal job with outlandish hours, and I just plain goofed!  I soooo much wanted this to be my “Victory  Walk” (post-surgery and extremely mobile), but had committed myself to being a facilitator at a  state-wide  Community Education convention before I knew the date of the Ranch Walk and felt obligated to keep my promise 🙁 

This year, all three Blackburns were able to attend, and we arrived at the ranch ahead of the Moore clan. Making the walk together (and watching rapidly growing grand-daughter Sara and her cousins enjoy the wide-open spaces while still within parental view)  are a special part of the walk, but I knew we needed to start the walk ahead of them. The surgery has done amazing things for my mobility, but I’m a bit wobbly right now and knew I would hold everyone else back.  Turned out that was a good plan. I handled rough terrain pretty well, kept a death grip on Tom on the loose & rolling gravel parts. . . .and about 2 miles into the walk (striding along on turf beside the main path) I took my mind off of what I was doing for a moment. Yep – flat out fall, stopped by my left ring finger catching on something (rock? tuft of turf? Who knows!) and my left arm!  Took a .5 inch by 3.5 inch strip of hide off of my left elbow and forearm, and bruised both knees!  That was the moment I was glad my Sara was somewhere behind us and unable to see Grandma do a wipe out! I got back up (with the help of both Toms and a gentlemen also sporting a cane (His comment was “If it hadn’t been you, it would have been me!” – sweet) and finished the final mile. . . . .then made a ‘pit stop’ at the on-duty ambulance for a clean-up and a gauze wrap to hide the messy patch from young Sara!  Fortunately, the relative size of a bandage hasn’t occurred to her yet, so it didn’t raise any alarms:)

I had a wonderful time, and the experience also convinced me that my legs & ankles are way too weak. It’s time to look into well planned physical therapy to turn this around! Oh, another HUGE treat. . . .Thomas won the dice toss at the end of the walk!  Since he is more a fan of younger-style footwear (and has no need of a purse), the certificate he received will buy me a much-need new pair of black SAS shoes!!!!  (They’re the only ones my orthotics will fit into!)


Friday, October 1st, 2010

Woke up at 4:40am (hate it when that happens!) and got up when Tom’s alarm went off at 5:30am. (Hate it when that happens, too! I’m retired, but just cannot make myself sleep through his alarm the way he did mine when I was working.)
The only way I can describe my mood today is giddy; felt appropriately foolish for dancing around the first floor and chortling, but could not help giggling throughout the morning. I left the #*@! purple orchid plant (1/12 scale) overnight so the glues could set completely, inspected it under strong magnification and padded the he– out of it for shipment to its new home this morning. With color choice difficulties, mobility issues and fatigue-factors presenting challenges, this order has taken a very long time to complete, but the buyer knows me well enough (at least I believed so) to bear with the delay. There’s been some “static” about this order since about 60 miunutes after she placed it! She happily bought a white phalaenopsis orchid plant with a yellow throat, deep pink lip and the typical ‘spike’ leaves of the species. . . .then decided an hour later that she wanted a purple orchid (with a color contrast) and the smaller/fatter leaves of other species!! It has been hard to overcome the irritation factor plus physical issues and do a complete re-make for no extra charge!
Once I had delivered the dratted purple orchid to the UPS store, I came home and triumphantly completed a standing needlework frame kit (destinened for my “Sew Be It” shop and a wooden school bus toy (to be added to the FAO Shortz display.)
Can’t help it – I am STILL giddy, and plan to complete at least two more kits tomorrow!

The good, the bad & maybe the ugly

Monday, August 30th, 2010

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!

Brilliant Analogy!

Sunday, August 8th, 2010

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!

Ford applause for my Chevy Camaro :)

Saturday, August 7th, 2010

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:)

That “someone” is often me, and for the past 13 years I have enjoyed parading my shiny red Chevy Camaro past the New Car Sales area enroute to the Service bay of our local Ford dealership. There is a shorter route to the service area, as Thomas remarked today, but there is always a gaggle or two of watchful, hopeful car salesmen (doing a fair imitation of vultures on alert) along the route I choose to take. They have always paid a bit of attention as “The Scarlet Lady” has rumbled past them (Glass Packs, Baby!), and I admit I have always enjoyed it:) Hey, you’ve got to find humor somewhere! I get a kick out of the ‘middle-aged female/red sports car/handicapped plates image’ – LOL!!

Today was a first, though, and I hope their boss wasn’t watching! The Lady received the usual appreciative glances (“She’s not a Ford, but she sure is pretty” has always been my translation.) as I rolled by on my way to meet up with Thomas and bring him home. Scant minutes later, we passed by them again to exit the dealership. . . . .several of them clapped their hands and one salesman stepped out just behind The Lady and pointed to her license plate! I’m still grinning!

Wicked Urge!

Monday, January 18th, 2010

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!

My new feet (the result of bilateral amputation of all ten toes) occurred due to a happy coincidence in July of 2008; I broke the little toe on my right foot (no big deal) and attended an already scheduled appointment with our family physician (who thought it was a huge deal). Due to medical delays (documented in earlier blogs), I didn’t have the “drastic surgery” alluded to in 2004-05 until October 2008. The change in mobility, in balance, in quality-of-life has been so marked that I keep getting a wicked urge to go startle a couple of doctors into a different mind-set! Have they already learned, do you suppose? Somehow, I doubt it!

One less doctor – – -Yay!

Friday, March 13th, 2009

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!

The drive was worth it. This is the doctor I dubbed the “hedgehog” months ago, because of his prickly and pugnacious bedside manner. He pronounced himself delighted with my progress, actually deemed himself “ecstatic” in the recorded report (earning startled looks from both me and his nurse) and said no further visits were necessary! YAY!

Whee – I'm driving again!

Wednesday, November 26th, 2008

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!)

Now, if I could just get back on my Enbrel therapy! Between cold fronts and increased physical activity, I am definitely noticing sore joints.

Stitch removal & stubborn surgeons

Tuesday, November 25th, 2008

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!

Have I previously mentioned that my surgeon is something of an opinionated curmudgeon? Well, he is. When pitted against a stubborn and opinionated patient (um, that would be me), that practically guarantees some arguments. . .er, discussions are going to occur. Today’s “civilized discussion” took place before the stitches were removed, when he asked me how the prosthetics tech he’d sent me to was progressing with the tow caps. I reported on the progress, and then admitted that I didn’t go to “his” tech. . . . .same company, to be sure, but I went to the branch much closer to my home and the tech I had seen for several years! How shall I put this? My surgeon was pissed, disapproving and unhappy ~ yeah, that pretty much covers it! Now I have to call my branch, have them halt progress and transfer my file to his branch, call and make an appointment to have his tech re-evaluate me and re-do the molds! More time lost, more delays and (probably) more ouchies because he’d “have to write a page and a half of instructions” for any other tech! Sigh!

I do have more freedom now; Dr. B. approved me for a few more steps at a time. Since I’ve been wandering around the house quite a lot the past few days (hehe), I take that as permission to ramp up the activity! DH found some soft, cushiony socks for me a few days ago, in outrageous colors with ‘traction dots’ on the soles. Since then, I’ve been walking without the worry of slips and slides on our wood and tile floors 🙂

I KNEW they'd do that!!

Wednesday, November 19th, 2008

When I had my post-op checkup, the surgeon told me to go see the orthotics/prosthetics group and have them fabricate toe fillers & carbon fiber shanks for me. Uh oh! The toe fillers (prosthetic toes) will prevent the front part of whatever shoes I wear from curling up like Persian slippers in short order. O.K. – preventing curling is a good thing, but the alarm bells went off.

I have been visiting the wonderful, caring staff at HK Orthotics & Prosthetics for several years now. They are a terrific bunch, and I like them immensely. However, I delayed for two days before calling for an appointment because I knew what they would have to do! When I whined about it at home. . . .”They’re going to have to take molds of my feet. They’re going to press down on the stitches (and the rest of my feet) to get a clear mold in semi-rigid foam!”, I was met with ‘comforting disbelief’ by family members. “Maybe not.”, “You don’t know that.”, “I don’t think so; this is different.”, etc.

Yeah, well. . . . .I made the appointment, and DH took me to the clinic yesterday afternoon. When my name was called, I took him in with me – to meet the crew, to provide moral support, and to prove that I know what I’m talking about 🙂 My technician was a bit taken-aback; the file mentioned amputation… it didn’t say all ten toes. He gently tested my mental & emotional reaction with, “Um – is this a ‘Good Thing’ ?” (Read: “How’s the adjustment to two deformed feet going?” Hehe, they were deformed BEFORE he surgery!) Once we got past introductions and surprise. . . .out came the semi-rigid foam mold blanks! My tech was as gentle as he could be. . . which means he had to push slowly but firmly, on both incision lines, until he got a useable mold. Ow, ow, OW!!!!!

Apparently, the carbon fiber shank will not only keep the toe piece in place, but will “put a spring in my step”. Hehe – – -translated, that probably means I am going to fall flat on my face trying to learn to walk with the prosthetics!! It’s all good . . . . . .or will be as soon as my feet quit hollering!