Wednesday, August 20, 2014

"I like her sticks!"

A consistent issue all disabled people deal with is judgmental strangers. Sometimes the snap judgments are good, some are bad, and some are downright horrific and make you want to bang your head against a wall.

One of the weirdest things I get from strangers is, “What’s wrong with you!” Note the lack of a question mark- this is often not a question, but rather a demand that I inform people of my life history. Why they feel the need to know quite so emphatically, I do not know, but that’s humanity for you. There’s always a few odd balls. Depending on my mood, I’ll sometimes give a short answer that’s true but way oversimplified, a curt stare, or, if I’m really feeling cantankerous, “I was bit by a shark- what’s you’re excuse?”

The best comments I've ever gotten, though, have both been from kids. One was a little girl, about 4 years old, who asked me why I “used sticks like Grammies.” I told her my leg didn't work very well, but I made sure I got the cool sticks- purple ones with springs in them. The little girl then solemnly checked out my crutches, walked back to her mother, and informed her, “I like her Tigger legs! They're cool.” I now inform kids that my crutches are my super-secret Tigger legs.


My awesome Tigger Legs, complete with purple and white decals


The second comment was made last weekend by an adorable tot while I was at a local mall. I didn't even catch the kiddo checking out my crutches, my mom did, and she brought it to my attention. (Little kids are adorable as they try to solve this bizarre riddle the world has presented them with.) This particular little girl was about 5 years old and was dressed up in her Sunday best. After watching me walk with awe for a moment, she hurried to catch back up to her mother where she blurts out, “I like her sticks!!”

Now if we could get the whole world on that same wave length, life would be awesome.

Tuesday, August 5, 2014

Not Dead Yet!

I know I’ve been gone for a while now, and I'd like to apologize for that. Things got quite crazy around here, but in a good way, and it was leaving me too tired to contemplate writing when I got home.

So, for funsies, I’ve decided my first post back needs to be about happy stuff.

1)      I GOT A JOB!!!!!! A good job. A job I *like*. Very important, that little L-word. I'm now a designer, marketing assistant, and office manager for a small engineering firm. I'm making more money than at my last job, which is great because it means I'll now be able to afford the majority of my day-to-day medical bills on my own. A lot of joy goes with feeling less dependent on others.

2)      I've stopped gaining weight! I've only lost about 2 lbs of the 20 lbs I put over the winter, while recovering from 2 surgeries only weeks apart. But I'm just glad to have stopped the gaining and be headed in the right direction.

3)      Had my annual neurology checkup with the guy who specializes in Movement Disorders. For years, I tremored so hard I couldn't hardly write my own name. I had massive myoclonic jerks, and lots of them. But for the second year in a row, I'm considered Stable and doing Very Well. I had actually gone a few months with zero tremoring/jerks and have had a tiny uptick lately, but we're assuming that's due to stress on my nervous system from other things being weird, and it's minor enough as to not cause any issues with day to day living. 

Biggest and Bestest (that is too a word!) of them all? I had my annual orthopedic checkup. Because I'd been having some bone pain, we went into it with a worry of possible fracture in the femoral neck. I've broken that hip 3 times before, as I'm one of the "lucky" fibrous dysplasia patients who experiences frequent fractures. I had been in touch with my doc, so before my appointment we had already gone ahead and done xrays and a full body bone scan. First off, the bone scan confirmed that my Fibrous Dysplasia is indeed Monostotic and not Polyostotic. Believe it or not, no one had ever bothered to check that. Second good thing, no fractures. But absolute best of all? The scan showed that my cyst is 100% stagnant (a Very Good Thing- this means it's not actively growing) and there's zero sign of Avascular Necrosis!!!! I can actually go 2 entire years before I need x-rays again!!!! 

I'm now far enough into work that I can manage to take care of myself when I get home, which means posting should become more frequent again. I do want to take a moment, though, to thank the various readers I've been in touch with since my last post 2 months ago. You guys have helped me remember why I take the time and energy to do this after a long day of work, and I'm excited to get back to over sharing again. ;)

Monday, June 9, 2014

Still a 20-something

One thing every disabled person I know struggles with on some level is socialization. Let's face it: simply getting around and performing ADLs (Activities of Daily Living) is more exhaustion when you're struggling with a portion of your body not working. The more exhaustion and pain a person faces, the harder it gets to get out there and have a normal social life. 

From the get go, I've refused to let my health issues stop me from getting out there and having fun on occasion. I know this isn't possible for every person who struggles with disability, but so far, it's been possible for me. I make sure I make it to library Knitting Group days and I occasionally hit up the local spinning group for some fun spinning wheel and drop spindle chatter. But some of my favorite memories? Having a night on the town with my girl friends. 

Our usual bar of choice is a local dueling piano bar. I can't drink, but watching drunk people try to sing is flat out hysterical, especially when you add in the antics of the piano players. Last night, however, we tried something different- we went to a drag show. Now, despite the fact it was a lesbian bar, I assumed (and I know my girlfriends assumed the same) that it would men dressed as women performing. Turns out, it was women dressed as men, mostly, with only a single guy dressed as a woman. It was still fun, just very different music than I expected. All of the performers did a great job, especially the woman who danced last, despite it being her very first night on stage. My girlfriends and I sang along, slipped the performers singles (it's apparently tradition when watching a drag show to give the performers a single dollar bill when they dance by), chugged pop to wash the smoke out of our throats, and gabbed.



Jessie and I at the show. (Jessie is on the right, I'm on the left.)

I did learn something new about my body, though. I'm not normally around cigarette smoke. In fact, I'm allergic, but thanks to spring time allergy meds, I didn't react beyond the burning throat and lungs. The big surprise of it, though? Apparently, the exposure to 7 chain smokers in one tiny bar for 2+ hours will set off my CRPS and trigger a flare in pain levels. I'm hoping this is temporary and I've spent the day resting to see if it will help. Fingers crossed. 

Sunday, June 1, 2014

The Sleep Saga

A big part of chronic health issues for many people is issues getting enough sleep of good quality. For me, I've never been a great sleeper. I was that kid in high school who only slept 3-6 hours per night. Thankfully, I was a book addict, so I did a lot of middle of the night reading during those years. Once the CRPS kicked in, what little sleep I was getting became of extremely poor quality. (That's standard for CRPS patients- we can't enter the deeper cycles of sleep, including REM, so we do not dream and the sleep is non-restorative.) 

So during my checkup with my Primary Care Provider (PCP) last week, I brought up some sort of sleep meds. She didn't like the first option I presented, which honestly, I wasn't a huge fan of either. I'm honestly a bit afraid of the odd side effects of some of the newer sleep aides on the market, so I wanted to avoid them for the moment. My PCP brought up an older medication, which was initially developed as an antidepressant but was found to be better at bringing on sleep than aiding with depression: Trazodone. A portion of patients on trazodone also see an improvement in neuropathic pain, so I figured I'd give it a shot. 

Tonight is night number 3 in this experiment. Nights 1 and 2 went fabulously. I went to sleep by 2 am (compared to my prior bedtime of 6 am, I'm thrilled with that) and I woke easily, to my alarm clock, feeling refreshed. After not getting good sleep for a decade, it's a bit surreal to wake up feeling refreshed. 

And now I'm off to bed to enjoy my third night of proper sleep. I can't wait. 

Wednesday, May 28, 2014

I have a confession

My deep, dark secret isn't really much of a secret. Truthfully, I'd describe it as a well-known fact. It's pretty obvious if you've ever heard me discuss cultural traditions. 

My "confession"? I'm Southern. I was born and raised mere minutes from the Mason-Dixon line. I'm from the suburbs of a large city, so I have zero accent 99% of the time. But so much of the cultural traditions I grew up are decidedly unique to the southern portion of the US. This means I've always known home canned jam is better than store bought, I know the true meaning of the saying "bless her heart!" (it's not nice...), and all emotions, be it happiness, worry, sadness, grief, celebration, or anger, are all dealt with the same way: with food. 

So when I was told today that my mother injured herself yesterday and her knee is now in a rigid brace while they figure out what ligaments/tendons/muscles are torn, I promptly turned my car around and headed to the grocery store. She and my father are both currently working two jobs (mom used to be a teacher and now tutors in addition to her job, and my father is an adjunct professor in addition to his regular job), so having time to cook good, healthy food is hard enough already. Add in Mom being down for the count with the knee, and I knew they'd be stuck doing a lot of eating out, which they are trying to avoid. 

I got down to business, and in a matter of a couple of hours I had a large insulated cooler bag stuffed full with food: pulled chicken barbecue with homemade sauce, coleslaw, pasta salad, fruit, and a frozen, easy cook meal for later in the week (chicken fajitas). 



This is just the normal, right thing to do in the way I was raised. It's the same way many of my friends and neighbors think. Heck, the sweet elderly lady up the street feeds me just because she can! But what I don't understand is why this ISN'T the normal way of doing things in other areas of the world. 

Think about it: when your child/spouse/parent/friend/whoever is in the hospital, do you want to cook? What about when you've just broken your leg? Or when a loved one dies? Most of the time, cooking is the last thing on peoples minds during times of stress. But it's during these times when a good, nutritious meal is most important. 

So I leave you, my readers, with a challenge. Give it a try. Next time there's a tragedy, illness, or even a cause for celebration (who has time to cook when a new baby enters the family?), feed your friends and family. Make a good, healthy meal and drop it off. I can guarantee you'll bring a smile to someones face and let the people who are important to you focus on the important events unfolding in their life. 

Monday, May 26, 2014

Puzzle pieces

I perpetually feel like I'm breaking, like another piece of falls out of place with every passing day. Like a small subset of patients with CRPS, mine likes to spread. It started in the outside of my upper right thigh, only, on Sept 4, 2004, at 2pm. The injury that triggered my CRPS (most cases are triggered by an injury) was a fall down 1 stair. Not a flight of steps- just a single, little stair. Further injury, of any sort, to the body can make the disease spread, and for me, surgery is a sure-fire trigger. If you think back over the last few months, you'll remember that I've had 2 surgeries since the end of 2013. Guess what that means?

Yep. It's now full body. The spread of the CRPS into my arms has been documented by 3 pain management physicians in the last two months, and I was referred for an aggressive series of Stellate Ganglion Blocks. These injections are basically the same thing as the SNB's I've been having done for years, just into my neck instead of into my back. My regular Interventional Pain Management doc, the guy who has done my back injections for years, sent me to his boss to have the series done. 

The hope is that we will be tackling this soon enough to bring it to a halt and get my arms into remission. At this point, I've had 2 injections done and my third is scheduled for 2 weeks from now. Honestly, I'm sure not at all sure if these will ever come close to buying me a remission. My current guess is no. But I'm certainly going to try, and if they help, then that will make me a candidate for a second SCS trial, this time in my neck. (And yes, even if you already have a SCS in a different portion of your spine, you still need to go through a trial again to get a second pair of wires implanted.) 

In the interest of full disclosure, when I started writing this post 4 weeks ago, the title was, "I swear I break a little more every day". Then, when I was out running errands a few days ago, it dawned on me- while things certainly can, and do, get worse on me on occasion, I finally have the needed tools to also help myself cope. Instead of being a crumbling piece of china that will never go back together, I'm more like a jigsaw puzzle, that both comes apart easily and can be slowly, and carefully, pieced back together. 

Image from EngineeringDaily.net

That certainly doesn't mean I'll ever be normal, fine, or even just not disabled. Far from it. Just like a puzzle is never again a solid sheet of cardboard after they cut the pieces apart. But puzzle pieces can be laid next to each other and form a very fragile semblance of a whole picture. And now that I'm finally working with a knowledge of what all the pieces are that exist out there, I can slowly start putting back together a life for myself. Just knowing that helps so much when things seem dark.

Monday, May 19, 2014

Sheep!

The KY Sheep and Fiber Festival was this weekend, and I managed to snag a ride with friends from my knitting group. As always, it was a blast! I got to shop, enjoy the colors and textures everywhere, see sheep, pet llamas and alpacas, and meet some online friends in person finally. One of my favorite parts of fiber festivals is the amount of non-wool options out there. I'm mildly allergic to wool, so I can't work with it (brief contact is okay, but no wearing it or knitting with it). But at places like the KYSFF? Racks of alpaca and silk roving for spinning! 



I wound up choosing to buy some dyed, unprepped alpaca locks, instead. I've never spun straight from the lock, so this will be an experiment for me. I want to eventually turn the brown/dark/red batch into fingerless gloves. No plans yet for the pinks/blues/purples. 



I also managed to snag 2 skeins of Wolle's Color Changing Cotton. This stuff is very popular in the world of knitters and as it's all handmade by a very nice woman, there are limited quantities each month. Getting it online can be tricky, especially the big skeins made for making shawls from, so I was thrilled to snag a Shawl Skein (185g) and a regular size skein (100g) at the fair. 



Ms. "Wolle" herself posed for a quick shot of her sweater, knit from her fabulous yarn.



Oh, and I got to try weaving! Decidedly fun. 



The day wound down with some Bunny Therapy (it was soooo hard to not give this fluffy little guy a new home, as he was up for adoption)...



... and some fluffy, and not-so-fluffy, sheep. The naked sheep always look so fed up with us silly humans. 




Monday, May 12, 2014

Celebrating Mom

Like all 20-somethings, it wasn't so far back in my past that my mom and I were mostly communicating with yelling and furtive late night/early morning notes (to avoid crossing paths). I was becoming sicker with every passing day in my late teens/early twenties, was enrolled in an insanely difficult college program, felt like I had nothing left to keep living for, and like many hormonal, stressed, and depressed teens, all of this turned into a lack of a good relationship with my mom. Thankfully, as my life evened out, and a glimpse of light began to appear in the end of my tunnel, that relationship that had been missing between my mother and I developed. She went from being The Enforcer to being a friend. 

My parents, on their 25th wedding anniversary:


I know many people for whom the relationship with their parents is sorely lacking. I even know a few who have cut all ties with their parents for their own mental health. And I'm glad that my relationship with my mother is growing stronger with time and not weaker and more strained. Seeing what these friends have been forced to give up (for while most of them never had a decent relationship with their parents, there is still the hope and desire for that relationship that is lost when the ties are severed) makes me all that much more grateful for what I have. 

This year has not been an easy one for my mother. She was diagnosed a few months back with Crohn's Disease. Crohn's is an autoimmune disease where the immune system begins to attack the digestive track, causing large lesions to appear. The lesions cause a whole host of issues, from malnutrion and anemia to exhaustion and infection. In addition, Crohn's also causes a range of other symptoms, including inflammaory arthrtis, a rash that looks and feels like wide spreading bruising, muscle aches, damage to mucus membranes (causing dry eyes, dry mouth, etc) and more. 

Mom has tried a minimum of 4 rmedications at this point, and has already been moved to bimonthly infusions of the biologic agent Remicade (the same medication I'm on for my autoimmune issues, oddly enough). She's in pain, sturggling to figure out what she can safely eat without getting even sicker, and trying to adjust to life wth a serious chronic illness.

And through it all, she's been here to take care of me. Just since January 1st of this year, she has moved into my home on 2 seperate occasions to care for me after surgery. She's bathed me, done my laundry, cooked for me, put up with my griping, gotten me out of the house when I hit my limits with Cabin Fever, and even cuts my grass. 

Her help, love, and care, and our improved relationship in these last few years, means more to me than I can really put into words. 

Mom, if you're reading this, I love you and Happy Mother's Day. Oh, and don't let Dad eat your cookie dough*! Sadly, I couldn't find any cookie dough theft alarm systms to include with the dough for your gift, so you'll just have to watch him near the freezer. ;)

(My level of Normal-ness is beginning to make more sense now, isn't it?)

* You can make cookie dogh and freeze it on trays/plates in individual cookie sized balls, then put the balls in a container once they've hardened up. When you want to bake, just let them thaw out on the cookie tray, then bake like normal. Not an ounce of taste difference and it lets you make just a few cookies at  time. 

N.B.: I apologize for any typos. My actual computer is out of commission for the moment and the iPad app for writing posts is extremely iffy, as is the post editing page on Blogger on an iPad. 

Friday, May 9, 2014

Spring is in the air

I've never been a big fan of winter. Far too cold for my tastes. Spring has always been my favorite time of year- not too hot, not too cold, not yet sticky with humidity. This year has been especially nice, since I have my own yard in which to plant flowers and start a garden (I bought my house late enough into the spring last year to make it tough to do any of this). 

My front flower beds have been in need of an overhaul, for several reasons. First off, the houses prior owner was a bachelor who did not enjoy gardening, and the landscaping made that obvious. Every since thing out front was a shrub. No flowers, aside from a few bulbs and a phlox leftover from the owner before him, and those the prior owner moved around haphazardly while doing yardwork. Add to that one bush dead from an attack of the Mold Spores of Doom and the phlox taking a heavy hit when we tore out and repoured the front walk, and you had some very sad flower beds indeed. 

With money being tight, I didn't want to buy many plants. I did cave and buy 3 of a purple perennial that grows to about 12" tall and has a single little purple flower on the tip of each stem. Thank to brain fog, I can't recall the name of the plant tonight, but they are very pretty and do well in the weather around here with minimal watering needed. My aunt gave me a few flowers from her own yard that needed thinning out, plus some snapdragons she bought for me, and my neighbor gave me a decent sized hosta when she thinned her own plants. All in all, I'm quite happy with how my front flower beds have come out.





Next up was starting the veggie patch out back. I wanted to do some potatoes, more carrots, garlic, and onions this year, so I got my hands on various pots and huge plastic containers to use as deep pots. These large totes are fantastic planters- just drill some holes in the bottom, prop up on some scraps of lumber to allow them to drain, and fill with dirt. 

Prepping the totes:




All planted and ready to grow!



The other big adventure going on right now? I've re-started Physical Therapy. PT is always a LOT of work, but very much worth it. It helps me maintain muscle mass (which has a tendency to vanish on me, between the CRPS and the scar tissue from all the surgeries), it helps keep my pain under control, it keeps me flexible, and more. This time around, in addition to the normal strengthening goals, we're working on improving my walking, including trying to get me down to using 1 crutch for real distances. Yesterday was my first appointment for this round and while I didn't hurt any extra last night, I'm paying the price today with overly tight muscles across the front of my thighs. I know from experience that that will lessen in the next few weeks, but right now my shuffle looks more like a drunk zombie lurch than a graceful shuffle. Now to just hope no one thinks I'm trying to eat their brains... 

Friday, May 2, 2014

Dictionary of My Life

Let's face it, I live in a world of TLA's. That's Three Letter Acronyms ;) . I never have posted a comprehensive list of what these medical terms and TLA's I use so often mean. Many of those coming to my blog are familiar with some of these health issues, but not all, and certainly not all of the various treatments I'm on for everything. So, a big bad list of everything! Okay, it's not quite everything, but I'm going to try!

RSD/CRPS- A neurological disease in which the sympathetic nervous system gets caught in a pain loop and winds up basically burning itself out. This causes extreme pain (CRPS holds the dubious distinction of being the most painful non-terminal illness known to science), blood flow issues and skin discoloration (what I call the Zombie Effect, or purple and white mottling, and Neon Pink, or spots of bright, bright red, are the most common), temperature regulation issues in the affected region(s), skin, nail, and hair growth issues, hypersensitivity to all stimuli (also known as allodynia), a variety of other issues.
Fibro- Short for Fibromyalgia Syndrome, or FMS. A neurological disease in which the nervous systems become hypersensitive to all stimuli. The overactivity in the nerves causes widespread pain. Issues like headaches, IBS, tremors, myoclonic jerks (a type of nerve malfunction that causes major muscle spasms strong enough to move the entire body), and more can occur with fibro.
IBS- Irritable Bowel Syndrome. There are three types, C, D, and A, which is short for Constipation, Diarrhea, and Alternating, respectively. 
Tachycardia- Overly rapid pulse. An average adults resting pulse is about 60-70 bpm (beats per minute). 
AI- Stands for AutoImmune, a classification of health issue where the immune system attacks the body instead of just foreign invaders like germs. Diseases such as Rheumatoid Arthritis, Psoriasis, Lupus, and more fall into this category. 
RA- Rheumatoid Arthritis. A form of autoimmune arthritis that causes joint destruction that can be rapid and severe. 
OA- Osteoarthritis. This is the standard form of arthritis that comes with aging. It is caused by wear and tear on your joints from overuse wearing down the cartilage, or padding, in the joint. It is commonly treated with oral anti inflammatories, most commonly NSAIDs (non-steroidal anti inflammatory drug) like Celebrex, Naproxen, and Meloxicam. 
FD- Fibrous Dysplasia. A rare genetic skeletal disease that occurs in about 1 in 30,000 people. A genetic flaw in (a) bone(s) causes the good, hard bone tissue to break down and leave behind a honeycomb like structure. This can cause the affected bone(s) to bulge and/or break, which can result in severe disability depending on location and severity. There are two forms, Monostotic (MFD) which occurs in 1 bone, and Polyostotic (PFD) which occurs in multiple bones. FD most commonly affects the "long bones", which includes the large bones in your arms and legs, ribs, and the skull and facial bones. 


SCS- Spinal Cord Stimulator. This is an electrical device that is implanted into the spinal cord through an (usually) outpatient surgery. A small battery pack is implanted in the back, side, or stomach, in a fat pocket close to the skin, and wires are fed into the spine. An electrical pulse is fed through the wires to help control pain caused by CRPS, Failed Back Surgery Syndrome, other back issues, diabetic neuropathy, and more. Patients use a remote control to control the intensity of the stimulation. 
SNB- Sympathetic Nerve Block. A type of injection done on the nerves where they branch off from the spine in what's called a Ganglion Bundle. These Ganglion Bundles branch off on the spine between the spine and the internal organs. These injections involve using a long, flexible needle to reach the ganglion bundle, then a mixture of medications including a numbing agent and an anti-inflammatory are injected to reduce inflammation. This can help reduce symptoms for patients with CRPS.
SGB- Stellate Ganglion Block. These are basically a SNB but done in the neck region in order to get to the nerves that control the arms and hands. These can be done from both the back and the front and use a much smaller needle than SNBs, as the nerves are closer to the surface. 
PT- Physical Therapy. .. Need I actually define this one? 
WWPT- Warm Water PT. Done in a heated pool, usually heated to 86 degrees F or warmer. My local therapy center heats to 89, which is comfortable even with the CRPS. 
OT- Occupational Therapy. A type of therapy used to help people overcome and work within limitations caused by a disability or severe injury. While PT works on gross motor skills, OT works on more fine motor skills and tasks of daily living. 

Forearm Crutches- Also known as Lofstrand Crutches, these are the most commonly use variety of crutch in the UK and Europe. In the US and Canada, underarm crutches are more commonly used, especially in cases of short term injury, as they are considered to be more stable. Forearm crutches are easier to negotiate and are less likely to cause nerve damage in the upper body, however, which makes them popular with those with permanent disabilities. 

Immune Suppressant- these medications suppress various functions of the immune system in order reduce inflammation and damage to joints and organs in those with autoimmune diseases. Many of these drugs were originally created for use in chemotherapy.
Biologics- A class of immune suppression made using recombinant DNA. There are a variety of different mechanisms these drugs use, which means different patients respond to different ones. Because these meds are more fragile than most, they are given via injection or IV infusion. They are more expensive and there will not generics of these meds anytime soon (great explanation as to why here), but they provide excellent options for patients who do not respond to chemo-type immune suppressants. Remicade, which I receive infusions of every 6 weeks, falls into this class of med. 


Sooo... at this point, I'm sure I've left out something. Actually, more like multiple somethings. But this covers all of the tags I'm currently using and then some. But, if there's ever a term I use that you don't recognize, feel free to ask. I don't assume people know what all these crazy terms mean- quite the opposite, in fact. 

Tuesday, April 29, 2014

3 Months Post-Op

It's been a bit over 3 months since I had the Spinal Cord Stimulator put in, and I figured I was past due for an update on how things are going with it.

First off, I am in love with it. I did a LOT of quibbling with myself over whether or not to go ahead with the surgery, as my dear friends at the Chronic Bitches can attest (I'm lucky they didn't disown me during all the quibbling and panic attacks), and I couldn't be happier with my final decision.

I do still have worries at times. The biggest of said worries is that I now have occasional back pain right where the SCS is attached to my spine, and it's clearly a bone sort of pain. I have had mild Degenerative Disc Disease for years now (which is when the spine shows more wear and age than would correspond to your biological age), but it's never caused hardly any pain, especially compared to everything else. But since the surgery, the random back pain will just... happen. Usually out of the clear blue. And it's a very precise location. I have theories as to why, including that my body has a warped sense of what bones should feel like thanks to all the hip shit I've been through, but when you get down to it, it's very transient (it usually disappears within a few hours and the longest it's lasted was less than 8 hours) and it's a hundred times easier to deal with the CRPS pain is.  I imagine if I already had back pain issues, I probably wouldn't even notice it.

As for everything else, it's going well. At the 12 week mark, I was allowed to remove my back brace, though I stayed on restricted movement until I saw the surgeon again at 14 weeks post-op. At the 14 week visit, he did a quick exam then set me loose. I now only need to see the surgeon every 6 months to make sure everything's still sitting correctly and working well. The only lingering restrictions above and beyond the ones already there from the CRPS and hip issues is limitations on my bending. I can bend and twist most ways, but "extreme bending and twisting, and twisting while bending" are prohibited. In other words, no real change to daily life, just don't take up modern dance or yoga, lol. Easy enough to deal with, I think. I am, however, clear to try tai chi if I improve enough to manage the weight shifts on my bad hip! I'd love to give tai chi a whirl one of these days. 

My pain is still under better control than it was previously. We've briefly added back in the Sympathetic Nerve Blocks again, primarily for the boost to blood flow to my legs that they provide, but will be stopping them again briefly (it's a long story). Having the SNBs, the SCS, medications, and increased movement again is definitely a great combo for me. My legs feel better than they have in 3 years, and I'm excited to see where adding in physical therapy will take me. 

I got to help pay back all those people who helped educate me along this journey, too, about 2 weeks ago. I got a call at noon- the patient who was going to come assist with a Question & Answer session hosted by my doctors office (they do these about once every other month or so, and a patient who has a SCS, one of the doctors, and the Boston Scientific reps give a presentation then answer questions from prospective patients) got sick and had to back out. I had attended one of these before my surgery and found it very helpful, so when the guys from BS asked me to come help out, I was thrilled to. I even got a bit of a bonus out of it myself- the guys from BS showed me some nifty tricks with my remote, including how to change the button volume and the screen brightness! 

Overall, the SCS was the right decision for me. I firmly recommend that if your doctors feel it's the right step for you, give the trial a go. That's the best part of a SCS- you don't need to have major surgery without knowing if it's the right thing for you. The trial will show you that. Just because you do a trial doesn't mean you have to have the surgery. Plenty of patients either don't get sufficient relief or dislike the sensation and stop after the trial, never moving on. That's perfectly fine and insurance companies expect it to happen sometimes. I do recommend checking your surgeons success rate before going with any one doctor. I have learned that success rates can vary as much as 40% from one doctor to another, and that's mostly due to the method used to insert the wires and how good the doctor is at finding peoples "Sweet Spot", ie the best place to put the wires to get optimal pain relief. If you're unsure on the success rates of the local surgeons who did the implants, try contacting a sales rep for a manufacturer. My reps from BS know all the local surgeons who do the final surgery as well as knowing the doctors who do the trials, and they know who's worth seeing and who isn't the best. They a treasure trove of information. 

As always, if you have ANY questions for me, feel free to ask! Just check back for a reply to your comment if you leave one. Blogger doesn't give notifications that your comment has been replied to. :) 

Sunday, March 30, 2014

CRPS treatment part II

This post has been a long time in coming- part I was done months ago, but I confess to starting this section, and then managing to forget all about it. However, now that I'm 3 months post-op from my SCS surgery, my doctors and I have decided to resume the SNBs to treat one or two symptoms the SCS doesn't yet cover (mostly just blood flow issues- I have much better blood flow to my legs when I get the injections than when I don't). And so I decided to celebrate my return to Sympathetic Nerve Blocks by finishing the epic post on them. 

3) Sympathetic Nerve Blocks

These are a type of injection that goes in from the back, directly next to the spine, into the sympathetic ganglion nerve bundles that branch off the spine between the spine and the internal organs. These injections should always be done under fluoroscopy, a type of x-ray, for safety considering the proximity to organs and the spinal cord. The mix of meds injected includes a local anesthetic to numb the nerves to ease the pain from the injection and anti inflammatories to reduce inflammation in the nerves of the sympathetic nervous system. By slowly reducing inflammation in the nerves, the pain and other symptoms of CRPS can be reduced.

Like all treatments for CRPS, the results tend to be mixed. Some patients find them nearly miraculous, and having 3 or more succesful injections within 1 year of onset of the disease has actually be found to prompt remission in a few lucky patients. Most patients recieve partial relief and find them a valuable tool. And some people recieve no relief from them, just as with all types of treatment for any disease.

The sooner into the course of the disease the injections are started, the more effective they are, in general. However, that's not a hard and fast rule of thumb- I began recieving nerve blocks more than 6 years after the onset and I get decent relief from the shots (I personally find them most effective on the burning type pain, the swelling and discoloration, and the allydonia). I'm a firm believer that if there are no contraindications, such as allergies, that they are worth a try, especially in patients who are within 1 year of onset. I'm not going to lie, though- the first shot isn't always going to work. It can take up to 3 tries to find the right vertebrea to target, as not everyones anatomy is identical. If, after 3 shots, there is still zero relief, then most doctors recommend discontinuing the shots. The first shot usually gives about 1 hour to 1 day of relief, and that's fine- the effect of the injections is cumulative and after a few rounds, I get 4 weeks from them. Between 4 weeks and a few months is the norm for duration of relief once you've recieved several injections. 

Since the doctor who does my SNBs is an amazingly awesome guy, and a massive believer in SNBs, he actually took pictures of me during the injection process for me to share with people. (Doc is such a big believer for a reason- he started his career as a pediatrician, and actually was my doctor when I was a little girl. He developed CRPS type I after breaking his ankle years ago. Due to his connections in the medical field, he had a diagnosis and his first injection within 1 month of onset. He got lucky, and went into remission and changed specialties right after, to help others recieve proper pain care. I love this guy for so many reasons!)

Step 1- An IV. Most patients prefer to recieve a small bolus of pain meds to relax them and help dull the pain of the shot. I'm a crazo, though, and my IV contains only saline, to help offset the fact that my already low blood pressure loves to drop right after the injection. Works like a charm for me, and I find the pain of the injection to be very transient. If you choose to recieve pain meds in your IV, you will need a driver to take you home and your appointment will take about twice as long. 



Step 2- Get comfy on the table under the floroscope machine.



Step 3- The assistant will prep your back using the same type of scrub as before a surgery. My doctor likes to mark the right spot for the injection first, by using a small piece of metal and quick X-ray via the floroscope to make sure he's got the same spot as prior injections, then he'll put a small dot with a permanent marker on the spot, then they prep the skin. 

Step 4 (optional)- Numbing the skin with lidocaine. This is totally optional and only some doctors even offer it. I'd skip it even if it was offered- frankly, the lidocaine will only reach 1/3 to 1/4 as deep as the actual nerve block needle goes, so all this does is numb the skin to the tugging of the needle. 

Step 5- Inserting the nerve block needle. As I've mentioned, these needles are long, but they are thin and flexible. While inserting, the doc will assess several times with the floroscope, to make sure he's in just the right spot. The needle will actually go in to the side of the vertebrea, then hit the side of the bone and use it's curved shape to curve under the spine, allowing it to access nerves trapped between the spine and major organs.

Step 6- Checking final placement. When the doc thinks the needle is in just the right spot, they will remove the metal, inner portion of the nerve block needle, leaving a thin plastic catheter behind. They then inject a teeny bit of dye and use the floroscope machine again to confirm the needles placement. If the dye is in just the right spot, the doc will then inject a teeny portion of the nerve block cocktail and wait a few minutes. This is to make sure the needle isn't too close to any major blood vessels. If it's too close, then the medication can get sucked into the blood supply and cause ringing in the ears and a metallic taste. If all is good, after a couple minutes of waiting to be sure, then the doc moves on. 




Step 7- Inject the full cocktail. They like to keep you laying flat for a minute or two, to let things soak in, then all is said and done and the doc will remove the needle (which is quick and easy). 

Then you're done! 

Sunday, March 9, 2014

Mall Revamp Brings Equality to Shopping




A local mall, the Kenwood Towne Centre, recently decided it needed a bit of a refurbish. Considering the mall had last been updated when I was a very little kid, it was likely past due for such a high traffic place. I assumed that like most overhauls of public spaces, they'd take the easy way out and just fix the cosmetic issues. Instead, the mall went above and beyond, in a fabulous way. 
This mall has a very peculiar set up. The second floor is twice the size of the first floor, and the half of it that has no first floor changes heights frequently as you go down the hallway. 


Stores on the right hand side of the hallway could be as many as 6 steps higher or lower than those on the left. This meant, with the old setup, that there were frequent stair cases. In order to get to stores when using a wheelchair or pushing a stroller, you had to follow the "Stroller Path", which was S shaped. To get a store not on the Stroller Path, you'd have to go one of the far ends, then double back on yourself, up to 10 stores, using steep ramps, causing excessive fatigue for a simple trip to the mall. 
This shot of the old pathways shows the height difference. If you look carefully, you can see 2 separate stair cases down the center. This was what the entire hall looked like, with a total of 7 or 8 stair cases. (This picture is not mine- it was pulled from the background of an old youtube video, as I never imagined I'd need a Before picture when the construction began!)

As part of their overhaul? They added a ramp every single spot they have stairs in this wonky hallway. 
image.jpg

These new ramps make the mall. It's fantastic! I can now get wherever I need to go with far less effort, and with no backtracking. I'm no longer constantly separated from my family or friends when I shop with them, allowing me to be more included. 

My hat is off to the folks managing the Kenwood Towne Centre. They did some pretty awesome things with this revamp, or should I say, reRamp. Now, if we could just get all public places to follow suit. 

Saturday, March 1, 2014

Zebras DO Exist!

Today's THE day. The day of each year where I become even more loud mouthed than usual. Rare Disease Awareness Day. 

Not-so-Fun Facts, courtesy of The Global Genes Project:
- 1 in 10 Americans, on average, have a rare disease
- 80% of all rare disease are caused by genetics
- 95% of all rare diseases have not a single FDA approved medication
- 50% of those affected by rare diseases are children
- of those children, 30% do not live to see their 5th birthday
- approximately 50% of all rare disease have NO disease specific group supporting patients or research

It's a grim picture, all told, for those who suffer from a rare disease. Many don't even have a diagnosis, or suffer unnecessarily for years due to a lack of a diagnosis, due to current practices. I spent 6 years without a diagnosis for one of my rare diseases (RSD/CRPS) and 7 years without a diagnosis for the genetic skeletal disease I have (MFD). With proper diagnoses, I likely would have had fewer surgeries and a much easier journey. Yet, most doctors feel no need to ever look beyond the most obvious answers.

In fact, in medical school, they teach new doctors a phrase: "When you hear hoofbeats, think horses, not zebras." The gist is that when you see a set of symptoms, you should always assume the most common answer is the right one. The problem with the No Zebras mindset is that if you don't fit into a tidy box with perfect test results or a common diagnostic criteria list, you're not going to get help. Too many people suffer for years, even decades, because no one will look outside and see that one of those horses has stripes. 

When you find that one doctor willing to look past all the horses and see the lone zebra standing there, hold on tight. They might be your only hope for decades more to come. 

Monday, February 24, 2014

And the Games are over...

The Olympic Games, that is.

The Olympics are always an exciting time for me, for several reasons. First off, I enjoy a lot of the Olympic sports and they aren't ones you normally see on TV, like arial, bobsled, skeleton, ice dancing, etc. I have a blast getting sucked into the emotions of the athletes.

But the biggest reason the Olympics are one of my favorite biennial events? The Ravellenic Games.

First off, for those of you not familiar with Ravelry, it is one of the largest social media websites out there. And it's exclusively for fiber artists, including knitters, crocheters, spinners, and weavers. During the Olympics, a group of intrepid and very hardworking volunteers run the Ravellenic Games. The Ravellenic Games start when the Opening Ceremony of the Olympics starts and end when the torch goes out at the end of the Closing Ceremonies. The point of the Ravellenic Games is to challenge yourself as a fiber artist, just as the athletes are doing in their sports. We even have events, like the Shawl Short Track, the Lace Luge, and the Hat Halfpipe.

This year, the team I compete on, Team No Spoons (in reference to the Spoon Theory by Christine Miserandino), elected me their Fearless Leader. Okay, so the real title is "Team Captain", but "Fearless Leader" is just more fun. Team No Spoons is team for the group* the Chronic Bitches. The Chronic Bitches, or CBs, as we call ourselves, are a support group for chronically ill/disabled fiber artists who are a touch irreverent, fond of naughty words, able to laugh at themselves, willing to talk about anything, and, most importantly, incredibly supportive. I can turn to my CBs about anything and everything, and have for 4.5 years now. They are my rock. We share knowledge, tips of dealing with difficult doctors, discuss the frustrations of being ignored by yet another doctor with a god-complex. It's been a privilege getting to return some of that awesome support by leading the team.

I'm a rather slow knitter, and crochet is out as my autoimmune arthritis has my hands, wrists, and elbows extra swollen lately, so I picked small. I opted to knit Petunia the Patio Monster from the Big Book of Knitted Monsters by Rebecca Danger. She made out of a self-striping rainbow yarn called Serenity Garden, sold by Jo-Anne's Fabrics. 




Also during this years Games, I decided to do a bit of spinning on my trusty Lendrum DT spinning wheel. A friend bought me a batt (fiber prepared in a sheet) that is black alpaca overlaid in rainbow dyed silk. I decided to separate the silk from the black alpaca and spin the two separately, into different plies (the individual strands that are then together to make yarn). Then, once I ply the black and the rainbow plies together, and knit up the yarn, you'll get peeks through the black of a very vibrant rainbow. I'm happy with how it came out in the end- I have about 86 yds of a dk-to-worsted weight yarn from this. Though, I am quite glad to be done trying to spin silk in very dry air- it was Attack of the Static Monsters around here. The one night, my mom started laughing at me, and I looked down to find my ass being attacked by a glob of green silk- which had launched itself more than 3 feet across the room to attack me. 

The batt, as it came in the mail:


The batt, once I had separated the silk and the alpaca:


And finally, the final yarn:


I'm very happy with how my projects came out, and I'm very proud of my team. They are truly some of the greatest women I've ever had the pleasure of knowing, and it was a pleasure working with them during the Games. Can you really ask for more? 


* Groups are basically sub-forums within Ravelry- you have to go looking for the group you're interested in to read anything posted there. You can join groups to get them to show up on your main page when you log in, which is very useful. The groups represent a wide variety of interests, from the fiber arts related like lace knitting and Sock Knitters Anonymous to non-fiber arts topics, like politics, TV/movie/music fan groups, and even health/wellness groups.

Thursday, February 13, 2014

Post-op... Again

This is me, after all, and random surgeries are as much a part of my life as anything else at this point. This one was #9 in a hair over 9 years, and it should have fallen in the bottom half as far as how complicated/serious/painful it would be. (Simple gallbladder removal as the pesky thing was filled completely with large stones.)

Once again, this is ME. I should have known a simple gallbladder removal wouldn't stay simple for long.

Surgery was Friday, at a local hospital. Of course, the surgeon I was seeing came highly recommended, but he doesn't operate out of the one local hospital I've had good luck with. Fine. Fingers crossed, things won't totally suck. I should have known I'd be wrong. Don't get me wrong- the surgeon, anesthesiologist, and nurse anesthetist (who is actually a family friend) all did great jobs. But the pre- and post- op groups? Were horrific at their jobs. Epically so.

The nurses refused to give me proper pain meds, despite them being ordered for me. No joke- they refused to give me the oxycodone the doctor ordered for me because I had already been given tylenol in my IV... even healthy patients aren't supposed to manage immediate post-op pain with 2 tylenol. At one point, I had to get up to pee, and before I even made it to the door of my room, I was bent in half, sobbing in pain. With my history of extreme pain, it takes a LOT to get to me. Plus, I now have the SCS implanted, and it allows me to get some pain coverage in my stomach, so I had it jacked as high up as I could get it to go. 

It didn't help that my internal organs are more affected by the CRPS than we ever imagined. The air pressure from the laparoscopic procedure should not have caused such extreme pain for the length of time that it did, but it did, and the fact that the SCS helped cover that pain, along with the way it presented, taught us that my organs are more sensitive to pain than we knew.

Also,  never, ever, ever trust a nurse at a post-op unit to understand the words, "I can't take the pain, somethings wrong." They blew me off and assumed I was making it all up. It finally got so bad my mom convinced them to release me, so that she could get me home and on to higher doses of pain meds. (Two low dose percocet shouldn't be a "much higher dose" than what a hospital gives you in post-op....) They were giving me 1/3 of what I should have been getting at the hospital. Once I got home and had access to heating pads and actual meds, I could breath again. Sad. 

I did learn one thing from all of this: to only have surgery at a few, select hospitals. I don't care how fancy they are, they can still be a nightmare waiting to happen (I'm looking at you, Rochester Methodist...). Stick to what you know works. Any future local surgeries will held at a single hospital, the place that did  my SCS. Because, well, this is me. There will be more surgeries, it's just a matter of what they turn out to be for. 

Friday, January 31, 2014

Temporary Pets and Shiny Objects

Obviously, I haven't been around much since the SCS stuff all got into full swing. At first it was basic exhaustion, then, well, honestly? I got out of the habit of posting. Anyways, I figured I'd share some of the crazy fun I've been having while hiding from The Cold. (Seriously, we spent multiple days this month colder than the friendly state of Alaska.... I live below the Mason-Dixon line. That sort of cold ought to be illegal.)

First off, a friend wound up living here for a few weeks, along with her hysterical cat, Annabelle. Belle appears to have forgotten How to Cat somewhere along the way. Why, we don't know- she grew up with a litter then was adopted with her sister, so the silly dog behaviors are just fun. She plays fetch. She also loves to sit on peoples heads and watch TV. Like I said, silly cat. A standard day in the life with Ms Annabelle around went a bit like this:

"This is my toy. No, I will not share right now, but I will stare you down."


"I have brought you my kill. Now I must stare at it to make sure it's dead."


"It's been 2 seconds- why haven't you thrown the octopus yet?!"


In between being owned temporarily by a cat, I made an awesome discovery- I can spin again!! On my wheel!!!!!! Yes, that requires that many exclamation marks. My fabulous Lendrum DT spinning wheel has been languishing for the last 2 years, since my RSD/CRPS flared completely out of control. The foot and leg motions needed to use it were horribly painful. In  the 2 years before the SCS surgery, I managed to turn a mere 1oz of fiber into yarn. That's about 20 yards, for what it's worth. You can't even knit half a fingerless glove with that amount. Since the SCS was implanted? I can crank it up, drown out the pain, and treadle for hours. In 3 days I managed to spin 4oz of alpaca roving and 1oz of a baby camel/mulberry silk blend. (And yes, fiber counts as "shiny", as shiny applies to all things good and awesome.)

The alpaca:


Part of the camel/silk (I'm now up to 1.5 spun of this):


Ms Annabelle disapproved of the spinning, and instead felt I should stop moving my legs so she could rest there while I adored her.


This is so much FUN. I'd almost forgotten how easy it is to loose yourself in a bag of fiber for hours on end. I feel like this surgery has given me a part of myself back. Still no way of knowing how much mobility I'll really regain, but if I get back just this one thing? The entire surgery was worth it. 

Thursday, January 2, 2014

I'm officially a robot! Part II

... and, continuing onward...

Of course, becoming a robot means I need a way to program myself. So I now have a handy dandy remote. The remote about the size of one of those old rectangular brick cell phones, the ones that were all the rage before flip phones hit the market big time. I have 3 programs on mine, Smooth, Thumpy, and Massage. My trial unit had a 4th option, but I never used it, so it's not on my permanent unit. The remote does show the battery life on both the remote batteries and the stimulator batteries, which is completely awesome.


I've had 1 check up, about 3 days post-op. Basically, they wanted to make sure the stimulation still felt good (it does!), that my incisions looked good (they did), to remove the bandages, and check my programming. I've been feeling the paresthesia in my stomach a good bit, and it can, and occasionally does, make me nauseous, so the Boston Scientific rep came in and tweaked my programming some. He backed down the intensity in some ares and upped it in others. I still get the occasional upset stomach, but I can now get meds in me and turn off my stim for a few minutes to combat it. Before I was heading straight to vomiting. At the check up, I also got to see the fluoroscope images from my surgery after the wires were put in. I love that on the right hand side of the image, you can make out the circular sections of the discs. On the left is the boney protrusions off the back of the spine. And right between the two sections, you can see my nifty new, permanent, wires.


The incisions don't look half bad, either, under all the Steri-Strips. (Steri-Strips are a product used here in the US to cover large wounds, especially surgical wounds, after things like stitches or staples are no longer needed. They give your skin a bit of a boost, but less than things like staples/stitches, and fall off on their own in 3-10 days.


Weirdest part of it all, though? Not only can you see/feel the outline of the brains of the unit, you can see the wires under my skin as faint grey lines. If you look carefully, they form a large U shape under my incision. VERY odd to look at. It was more obvious the first few days due to swelling.


All in all, so far, I'm happy with the choice I made. My pain in my legs is between a 4 and 5 most of the day, instead of  the 6 to 8 range. I didn't get down to 4 hardly ever before Robot Day, so I'm hopeful. Now, to heal enough that I can try physical therapy and walking! My post-op pain is diminishing rapidly, my abilities are already on the upswing (I can bend my knees further when standing and bear more weight when walking), and I'm excited to see where things go from here.