Posts Tagged ‘RA’

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They Faxed What To You?!

Friday, April 1st, 2011

4-01-2011

This could be a funny entry, but I think I have lost my sense of medical humor after many years of erroneously trusting doctors staff to use old-fashioned common sense, basic powers of deduction and/or simple reasoning skills. Yes, I know. Trust me, I know it’s a silly (and sometimes dangerous) assumption; I just continue to expect intelligent file handling and proper sharing of the correct information when my physician refers me to another specialist! To be fair, most of the staff get it right most of the time, but??????

At my last appointment with my RA doc (the follow-up appointment which had originally been scheduled for November 2010 and cancelled/rescheduled so often that it took place March 29, 2011!), the in-house lab did an extensive panel of blood tests. Several hours later, one of the nurses called to explain that some of the results were back – my ALP (Alkaline Phosphatase) was sky-high & Doctor W wanted me to see a Gastroenterologist soon. (Hmmm – same story about 12 months ago.)

I’ve put off contacting the Gastro’s office as I am still fighting a nasty bout of IBS. (Actually, I am betting that is why the lab work came back wonky.) Someone at Dr. W’s office sent my lab results and contact info to the Gastro; his nurse called me today to set up an appointment. A hint of puzzlement in her voice tipped me off – - – -something wasn’t adding up for her. Not sure why, but I asked “What is the date on the lab-work you are referencing?” “Uh, erm, it seems to be July of 2010!” No wonder she was confused!

I immediately called Dr. W’s office, went through the customary dance with the automated phone service and managed to snag a real, live person. (Pressing “0″ sometimes over-rides the system and lets you contact a person instead of a “leave a message, we’ll get back to you” recording.) As briefly as possible, I explained that someone at their office had contacted Dr. G’s office and supplied them with July 2010 lab results instead of the relevant March 2011 lab results! I expected some embarrassment and an apology – what I received was a blithe explanation along the lines of “Oh yes, that happens often. The lab results do not reach a patients file for a couple of days ~ if our staff contacts another physician right after we’ve seen you here, the current results aren’t available to them yet.” OK. . . .so this seems to be common knowledge throughout the practice? With that in mind, it doesn’t occur to the staff to seek out up-to-date lab results before contacting another physician? Groan! Somebody, anybody, please tell me this sort of error doesn’t occur with predictable regularity with this clinic!!! (Except, obviously, it does!)

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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. . . .!

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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 :)

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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!

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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!)

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Giddy!

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!

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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!

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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!

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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!

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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!

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