Posts Tagged ‘Rheumatoid Arthritis’

RA Triumphs and an OMG “Grandma Moment”

Friday, August 10th, 2012

Some of the medications I take in an effort to slow the damage Rheumatoid Arthritis causes (not just to joints, but also the internal organs) have side effects.  Actually, all of them do, even the various cocktails of vitamins; that’s why the close supervision of a physician is necessary.  One of the side effects is the leaching of inordinate amounts of calcium from the bones – not good ever, but even more problematic for a gal in her 60’s, when osteoporosis is a normal part of the ageing process.

This morning, I had one of those pass-or-fail appointments with my Rheumatologist. Before I met with him, I had another Dexa-Scan (bone density test) to see if two years of nightly Forteo ™ injections had strengthened my skeletal structure. My “best guess” was that the results would come back aces, as I don’t break when I fall, I bounce.  Yes, usually minus some strips of flesh, but nothing more than that.  I was still more than a little nervous when my doctor entered the examination room, though . . . . because I had three photographs of me during the trail-ride in July arranged on his desk-top!  He was going to go ballistic if my Dexa-Scan numbers were low!

I received an A+ grade on the bone density test, and will finish my course of Forteo™ in about one week!  I also got “permission” (as if I ever wait for that!) to ride as much as I wish.  I’m also on a different schedule for my Cimzia™ self-injections.  The usual (400 mg once a month)  dosage has left me with good weeks & bad weeks, so the new schedule (200mg every two weeks) should help to keep the serum level more constant.  Great news, as I simply don’t have time to feel bad!

This evening, 5 year-old Sara was helping me prepare dinner as we discussed the various wildlife she has viewed through our patio door. She listed the raccoons, possums, blue jays, cardinals, sparrows, finches, red-headed woodpeckers, cow-birds and the squirrels. Suddenly, she turned her bright blue eyes towards me and asked, “Grandma, how do squirrels get baby squirrels?”  I froze in place – for a moment, I simply froze and attempted to look thoughtful.  What I was really thinking was that I had absolutely no idea how much basic biology had already been explained by my daughter and son-in-law! What’s a grandmother supposed to do?!  After “looking thoughtful”, I answered “Hm. I’ve never really studied squirrels, Sara. Your mommy probably knows”.  Later in the evening, when she was engaged in activity with her grandpa and uncle, I told my daughter about the question. With that deer-in-the-headlights look that all parents wear at some point (and which probably more correctly describes the look I wore earlier this evening), she said that the subject hadn’t come up at home yet. “Well, brace yourself, it’s going to come up soon!”  I can picture it now: Sara asks and her parents give her the short-text, age-appropriate answer. Sara mulls over this new information for a moment, then solemnly announces “You need to tell grandma about all of this, because she doesn’t know!”  LOL!

 

Physical therapy – that’s a surprise!

Wednesday, November 3rd, 2010

 Before my follow-up appointment with the hand surgeon (today), I fussed and whimpered and fussed some more; the “brave Christy” simply went into hiding, leaving a complete coward in her place!  

 My last encounter with stitch removal was two years ago, when the male nurse (aka Attila the Hun!) removed all of the surgical wraps on both feet (including the ones which had adhered to the incision) briskly, efficiently and painfully.  He then proceeded to SCRUB the incisions with great zeal and particularly rough-textured gauze! I have a witness – I think the marks of my fingernails are probably still dimly visible on Tom’s left hand!  The actual stitch removal was done by a very sweet, empathetic nurse, but she still had to dig for stitches within a rather deep V-shaped  area on both  feet and somewhat overgrown by new skin. . . . every time it hurt too much for me to stay silent and stoic, I felt guilty for making her feel guilty about hurting me!  All of this, of course, was on my mind while Tom helped a very reluctant me to get dressed for The Appointment before he left for work.

The mystical, “magical gauze strip with important healing qualities”  hadn’t been removed when my neighbor (aka Ace Nurse) or I did my own dressing changes, mostly because it was obviously well adhered to the surgical site by the rather important red fluid that flows through my body!  I was fussing because I had mental images of the surgeon (or nurse) calmly ripping the “magic strip” off.  In point of fact, it was the nurse who did the deed, and then proceeded to dig around and remove twelve stitches before leaving me to my surgeon’s tender mercy.  OK – I  survived that, the  incisions looked good and I was sent off to physical therapy to be fitted with a ‘figure-eight’ brace and given a sheet of exercises to be done five-times daily.   (According to the surgeon, “We had to remove a lot of extraneous bone.”) and released to return to the therapist’s clinic on Nov.10th. 

Excuse me? (1) The center of said figure  8 brace rests across all three incisions, with no padding between brace and skin! 2) I can perform the range-of-motion exercises much better without this infernal appliance constantly shifting and 3)  “OK, Chris. . . .give it time. Calm down, do the exercises, breathe deeply  & give it time. . . . well, I’m trying, but. . . .!

Good morning – rough evening!

Thursday, October 21st, 2010

Tom  and I had to report in at the surgical suite of The Hand Center of San Antonio at 6:00 this morning.  Ugh!  Granted, it didn’t give me a long time (thirsty and hungry) to wait or become nervous, but we were sure doing a lot of yawning!

Everything went like clock-work, and I’ve seldom met a warmer, friendlier group of clerks, nurses & technicians.  The in-take clerk (usually the worst of the “just-the-facts-ma’am, sign here..here…here, and there, “go sit and wait to be called” crew) was warm, welcoming, and even shunted some of the lengthy paper-work towards Tom to be filled out once she noticed that the pen & I were engaged in a small battle of wills.  (I try to have a Christy – friendly pen with me at all times, but I didn’t even bother to take a purse with me; just my ID, insurance card and med list.)

Pre-Op was fairly empty when I was taken back to be prepped. All of the nurses were sweet and “un-rushed” (If it isn’t a real word, it ought to be) and I drew Christy (yep!) as my prep-nurse. Went through the standard litany of questions (designed to avoid errors, so I don’t mind them at all!), but Christy didn’t employ the usual Drill Sargent approach :)  Got “comfortable” in my surgical gown (yeah, riiiiiight) and another nurse came along to start the requisite IV; lucked out again, as she slid the needle in and taped everything down without a twinge!  I was handed a marker and initialed the area Dr. Rust would be working on – LOL!  Met my anesthesiologist, who was a tad surprised to hear that all he’d be using the IV line for (aside from the standard Ringer’s Lactate) was a light bit of sedation; Dr. Rust & I had agreed on local injections at the base of the 2nd and 3rd fingers.

One of the pluses of avoiding general anesthesia is that I went straight from the OR to Level 2 Recovery, where I spent a very short time being monitored for wonky blood pressure (it does it every time!) and a little longer sipping dark roast coffee and sitting in a recliner before Tom came in to take me home! I was settled on our bed by 9:30 am.

That’s a good thing, because my surgeon encountered more than she expected.  After she removed the cyst, she found a large rheumatoid bony growth that had to be cut away (remember my “things can hide in x-rays” note a couple of posts back? Bingo!) . Hence, I apparently have a V – shaped incision instead of the small, straight cut she’d planned to make. It also means that the pain level is several notches higher than I expected; when bone-cutting is involved, it definitely ramps up the Ouch Factor!

I won’t be making miniatures for a couple of weeks, but I’ll feel better in a couple of days :)

Run up to surgery # . . . whatever!

Wednesday, October 20th, 2010

Back on September 1st, I met with Dr. Stace’ Rust about the knot/lump/whatever which has been forming on my left hand ring finger, palm-side and just below the first knuckle.  It has been growing for several months……..not actually sure how long, as I have a bad habit of trying to ignore “little things”, even when they get in the way of normal mobility or make tasks harder. (It’s called Surviving RA!)  I finally quit ignoring this one when it occurred to me that I might not be able to remove my wedding ring or engagement band without having them cut off  by a jeweler!  Tom accomplished the removal with liquid dish soap, a great deal of pulling and some mashing of the knuckle; that was enough to convince me I needed to find a hand surgeon!  ( The wizard who performed three reconstructive surgeries on my right hand, the last one several years ago, has since switched to the more lucrative field of plastic surgery!! )

During my mid- August appointment with my rheumatologist, I asked him who his favorite hand surgeon was.  I was lucky on several counts; her practice is located close-by, she was accepting new patients, and I could get an appointment with her relatively quickly!  At the first visit (Sept. 1st) , she had several x-rays taken to rule out a bone chip or other solid mass. Nothing there, except a rather crooked finger. (Take note . . . .things can hide from an x-ray!)  Examining the finger, she posited three possibilities; rheumatoid nodule, benign tumor or cyst.  We could confirm or rule out door number three by having her attempt to use the typical, rather large needle & syringe to drain it.  Yes, I let her – yes, it is a fairly uncomfortable procedure – yes, it was a cyst.  Caveat: it could still return, at which point we would need to discuss surgery.

September 2nd, when I removed the band aid, the cyst had refilled and enlarged a bit!  Rats!   Back to Dr. R’s ~ time to get me on the surgical schedule. I saw her on Sept. 13th and my calendar turned out to be much more of a problem then hers!  Sept. 17th-19th was the Society of American Miniaturists (SAM’s) Wonderful  Workshop Weekend. I was signed up for two workshops, haven’t been to a real Miniatures Show in over a year, this was the firs Workshop Weekend at the new Temple, Texas venue  and I  Was Going!  Sept.21st & 22nd were appointments I had already booked with medical appointments and  Sept. 24th was our last round-trip to Houston & Baylor University for follow-up on Tom’s injured left eye (we’re rotating him back to the excellent medical team here in San Antonio, and I was not going to make that drive in surgical bandages)!  Finally settled on October 21st, which sent me into an energy-draining quest to complete everything on my “You need two hands” list before the chosen date. I almost finished everything on the list, too!

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!)

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!

Any accomplishment is progress :)

Sunday, May 2nd, 2010

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!

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!

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.