Monday, September 30, 2013

New Day, New Opportunities

So, I got fired. Fun times. Not. 
I’ve decided to look at this as a good thing. I’ve already gotten word out in the design community that I left my job to “take the plunge”- basically, I’m telling people I realized I was too comfy and busy where I was to ever make it back into design. Which is very, very true, I was just too chicken to quit. I have a degree in design and would love to get back to it.
So I’ve decided to take advantage. This is my chance to get a design related job again. I’m fine if I end up as a CAD Monkey, as they make about 75-100% more than I was at my old job. And it still helps me make connections. I stopped by my old college and convinced one of my old professors to let me come to some of his design classes this semester to get back in the right headspace, and ended up staying for most of his class yesterday debating the how’s and whys of designs with his students. It felt good.
Once that class was done, I hung out and checked out student projects, saw a few people’s portfolios, checked out a ton of sketching (and realized I need a TON of practice), and then headed down to track down my old Technologies professor. He teaches all the 3D design stuff. In under 10 minutes, A helped me find a way to get one of the 2 softwares I know for free (Dad has the other from teaching a class last semester in the Engineering College), AND hooked me up with his websites which has every single lesson plan he teaches every year level in the program as a video for free, unlimited downloads. A kicks ass and I have a total designer/student crush on him, lol. He also said I can email him if I have any questions and that if I struggle I can come to his classes and sit in the back. :D
So, now comes tons and tons of design work. And I do mean tons. Oh, and applying for COBRA and Unemployment, but my friend M (who was fired from the same place mere months ago) and my aunt both gave me some great tips for getting unemployment so I’m cautiously hopeful.
Naturally, the stress has everything in a flare, but it's livable. I'm being careful about over stressing the legs at night so the pain has a chance to die down a bit before attempting sleep. 

Friday, September 20, 2013

Good News- PT edition

Good news on the Physical Therapy front today! I had my last visit from this most recent round of PT today and I gained a 1/2 of a point in strength (on a 5 point scale) in a month! I started off at a 4-/5 4 weeks ago and today ended at a 4+/5 in leg strength in my right leg. Considering the massive damage done to my muscles over the years during surgeries 1-5, my therapist thinks this is as good as I’ll likely ever get. She’s thrilled I can now do 30 leg lifts in 3 sets of 10 without collapsing afterwards. Heck, I’m thrilled I can do that again. I had been stronger and as is the norm with RSD had lost some strength in the year since my last round of PT. But I’m now strong enough to move forward with the SCS trial!!

I must say, the PT I’ve done in the last 2 years has taught me how patients with RSD should do PT. I have a therapy team where everyone had seen a RSD patient at least once before, they’re all very willing to learn, and they know how to push someone just enough without pushing hard enough to start a massive flare. Prior to finding this team, I’d had therapists who had pushed me into epic flares. The one pushed me hard enough that I went from a cane to barely making it with a rollator- in under 2 sessions. It took me 3 months to get back to a cane from that run in. And I didn’t know enough about RSD at the time to say “NO!”

How did I luck out on this team? Simple. I skipped all the normal therapy centers. Instead, I signed up for outpatient therapy at the local rehab hospital. Since they work primarily with victims of major accidents or the very ill/elderly, they’re used to patients who aren’t going to leave their care ready to go run a marathon. Instead, they understand that making it through a small store with 1 crutch instead of 2 is a huge victory.

We did warm water PT exclusively in those first months following surgery #5, twice a week for 30 minutes. The pool there is- get this- 89 degrees F at all times. The air is in the mid to high 80’s as well, so patients don’t get chilled. And they have onsite shower facilities, in the same heated air, to get the chlorine off sensitive skin at the end. I have to say, the pool therapy has calmed down the allydonia and burning-specific pain more than anything else I’ve tried (aside from the Sympathetic Nerve Blocks). It keeps me capable of wearing tights and yoga pants, and even the occasional pair of very oversized, loose fitting khaki cargos, instead of just fleece PJ pants. I love that pool with a passion. Added bonus: I can’t walk on land, but I can walk laps, without holding on to the handrail, in that pool. :D

In the beginning they used the lift to get me into the water, which worked great as my leg was still very swollen and my knee barely bent. But after several months they were able to teach me to get in and out on my own using the stairs and handrail. It’s not smooth or sexy, but it sure gets the job done. Plus, knowing how to do that has allowed me to use other pools, such as the pool at the beach house this summer or the heated kids pool at the gym down the road. We started very slow and have built up, slowly, over the years. I even wear ankle weights now in the water! We also now do some land based exercises, as I’m considered strong enough to manage them. They tend to be more painful, but they work different things, so it’s a valuable tool to have in my pocket.

I have to say, I HIGHLY recommend Warm Water Physical Therapy with a very experienced team and a very warm pool for RSD patients. It’s been a life saver for me. Remember, though- slow, steady, and very turtle-like progress. And NO ICE!! (Ice can permanently worsen RSD by demyelinating the nerves in patients with RSD. Why it does so is unknown.)

Friday, September 13, 2013


In between PT, Remicade infusions, nerve blocks, medical research, and attempting to keep my house clean (note to self: that lovely pair of clean panties you have on? It’s your last. DO LAUNDRY.) and food in my fridge, I’ve been canning up a storm. I’ve been joking that I’m just embracing my Southern roots, as I am, after all, a Kentucky girl born and raised, but what it really comes down to? Canning is imminently satisfying. There’s something to it- the hours of chopping, dicing, cooking, boiling jars and lids, preparing things in massive batches, then it all comes together when you fill the jars, lid them, and place them in the boiling water bath to seal them.

When you can, the lids have 2 pieces- a thin metal circle with a rubber ring on the bottom, and a screw on portion that holds the actual lid piece on during the sealing process. The screw on part has no real purpose than to hold the inner lid in place while the seal forms. So when you screw on the outer ring, you make it “finger tip tight”. This allows the super heated air between the top of the canned food and the lid to escape, but then when what air remains begins to cool, it shrinks and sucks the lid down onto the jar, creating the seal. So the seal actual happens after the jars are out of the water, and it makes such a lovely POP when they seal.

That POP is so imminently satisfying. Knowing that all your hard work paid off, that you’ll have lovely, organic, locally grown produce, sauces, etc, to enjoy all winter long, satisfies some primal part of the brain and despite the crazy mess that is now your kitchen, everything is right with the world.

Approximate list of what I’ve done so far this year (quite a bit has been shared with friends/family):
-          17 pints of pizza sauce  
-          6 pints of salsa
-          9 pints of Strawberry-blueberry-pom jam (insanely delicious, BTW)
-          2 liters of whole tomatoes
-          6 pints of pears

The berries were store bought, though organic, and the pears came from a co-worker of my fathers who grew them in his back yard. Ironically, despite having enough pears in my house for another 6-10 pints of the things, I hate pears. With a vengeance. Have since I was a small child. BUT, my mother, who is a huge part of my medical care, loves them. And since she’s borderline diabetic, she tries to avoid canned fruits due to the syrups and juices. But you can can pears in water, so I cooked and canned the pears in a water/honey/lemon mixture that was 1 gallon of water, 1 teaspoon of honey, and half a teaspoon of lemon juice (helps discoloration). That will keep the pears nice and  delicious without the sugar boost.

I must say, though, that I’m looking forward to the end of canning season. I’d like my kitchen back now, please. I’ve been sticking to using as much dishwasher safe gear as possible, but I’m still wearing myself out doing all of this. There have been no spoons for other cleaning, house work, etc. And when the burning gets bad in my feet, not walking is the only thing that helps half the time. Obviously, standing on a tile floor can hurt. I need to find one of those ultra-squishy kitchen mats to stand on… Hmmm… Off to go shopping on Amazon!




Monday, September 9, 2013


So, I have a problem. A Big one. Ever since Dr. C, the Most Amazing Orthopedist, opened his mouth and said those magic words, “You’re a Spinal Cord Stimulator candidate finally”, I’ve been a giant bundle of nerves. A MASSIVE bundle of nerves. I’ve been puking, my appetite is wonky, I’m starved one second and food seems disgusting the next, I’m getting headaches. I know it’s all just nerves, but seriously. This has got to stop.

I know why my stomach is like this. It’s a family thing- we all have junky GI systems. I was born with extreme IBS-C, severe acid reflux, and gastroparesis (which is when the stomach doesn’t contract properly, so food doesn’t empty into the intestines, causing food to rot in the stomach, which causes nausea, vomiting, and limited appetite). I don’t even think about it most of the time these days, since I’ve been like this since the day I was born. My brother and several of my cousins are the same way, and my mom has a few issues of her own with her stomach. I have my GI issues mostly under control these days- heck, I can even eat some fried food and raw fruits and veggies again without puking! Well, I could, anyways. But as soon as I get stressed, bye-bye control.

I’m contemplating some serious meditation, but I’m not sure when I’ll find the time for that. Right now my Awesome Ortho wants me doing PT to build up strength pre-SCS trial, and my backs been bugging me, so on top of intensive (well, intensive for a RSD patient, anyways) lower body PT, I need to add back in upper body PT for a spell. Plus I need to finish re-finishing a kitchen table and chairs set so I have somewhere to sit up straight and eat/work on projects during the trial and, if I’m lucky, post-op of the final implant. Plus I need to rehab a cabinet I’ll be using as a pantry in my kitchen. I have extremely limited storage space that will reachable with the implant in, at least for the first few months, so I’m on a huge push to get that done. On top of all the wood working, I have some serious cooking/canning to do. The Killer Tomatoes are trying to eat me alive, with their hundreds upon hundreds of the little red things. I swear my bathroom smells like blanched tomato at this point. I’m pushing myself into negative Spoons every week trying to keep up.

But as far as the stress goes, I think I need to start combing the Chronic Bitches for information about free guided mediations for stress management. I have too many hopes and dreams wrapped up in this implant. It’s been my “someday” since I first learned about them 5 years ago. I don’t just want this to work, I NEED this to work. I’m only 26 and live in an area with very strict controls on narcotics. The meds they allow me still leave me trapped on crutches. PT (land and warm water), meds, massage, chiro (to keep my pelvis and spine aligned despite the limp), rest, carefully selected clothes, being best friends with a recliner- it’s all there to keep me upright with the help of my trusty crutches. My RSD has been on a slow and steady progression since the day it started- it started with less of a bang! than some cases, but that hasn’t kept it from becoming severe over time, aided along by the necessary hip surgeries to save my femur. If this fails, the options left include extremely expensive Hyperbaric Oxygen Therapy (known as Hbot), ketamine (a powerful anesthetic used in either long term infusions in the US or for short term comas in Mexico and Germany- it’s very experimental and controversial, plus extremely expensive at $20,000- $30,000), or an implanted device that drips narcotics directly onto the spinal cord. The remission many newly diagnosed patients can hope for isn’t an option for me- I had RSD for 6 years before I got a proper diagnosis. Remission for long term sufferers is nearly unheard of and trust me when I say we’ve tried just about everything thus far and with no luck. So, it's try the stimulator and keep my fingers crossed that it works.

Thursday, September 5, 2013


Today’s the day. My Gimp-a-versary. I became disabled at 2pm on Sept 4th, 2004, when I fell down 1 stair and shattered my femur, thus developing RSD. I still can remember so clearly laying on the floor at the bottom of the stairs. My legs were bent at the knee with my feet trapped under my butt as I lay back on the stairs. The impact of my knee hitting the floor had shattered the right femoral neck, but I didn’t know that yet. All I knew was that something was WRONG- that would be the shock speaking, I know now. I refused to let anyone touch me for the first few minutes, before finally allowing my dad and neighbor to move me on to the couch. Somewhere in there, I managed to lock my legs at the ankle. No clue how the heck I pulled that off, considering I had only some now damaged muscles and no bone with which to move my right leg. My ankles stayed locked for the next 5 hours.

It felt like an hour but it was likely only 15-20 minutes before an ambulance arrived. The local paramedics told my mom we were all crazy, I most assuredly had NOT broken my hip and I was drug seeking. So they picked me up and slammed me down on the stretcher. Think bull in a china shop. That’s when the pain broke through the haze of shock and the screaming began. From there, things began to get a bit fuzzy. I lived only 6 minutes from the ER, but it was more than 2 hours before I was given IV pain meds. They only finally drugged me when my screaming began to scare off people in the waiting room.

After 2 hours in the ER, they took x-rays, which were sent to the orthopedic oncologist who had performed my first hip surgery 6 weeks prior. He refused to do the repair himself due to the complexity, and the quest to find a surgeon began. We finally found someone a few hours later who would take my case and I was shuttled across town a hospital he could operate at. I remember nothing from this point to 3 days post-op, and the next month is mostly a blur.

I’ve not had a single pain free day in the last 9 years. The degree of pain and the way it manifests have changed, but not the pain itself. If I had gotten a diagnosis immediately, there might have been a chance I would have been one of the very lucky one who get a period of remission, but I was blown off. For years my doctors didn’t believe how much pain I was, partially because I have a very high pain tolerance and managed to push through the pain and stay in college. Like many RSD patients, the road to diagnosis was a long one, including a misdiagnosis of Chronic Pain Syndrome along the way. It wasn’t until I ran into my now-Interventional Pain Specialist out cell phone shopping one day  (he was my Pediatrician when I was young) and he asked me to come in for my first Sympathetic Nerve Block that I got a real diagnosis and proper treatment.

Ironically, September is also Pain Awareness Month here in the US. So, I'm celebrating surviving 1 more year* with RSD by putting my story out there. I've (with permission) hung 2 signs on my desk, facing a main hallway at work. One sign details some basic info about chronic pain, the other says, in huge bold letters, "I'm disabled due to RSD/CRPS. Have any questions? Feel free to ask!" I figure if I can get just 1 person to ask, then it'll be worth putting myself out there. 

* The idea to view ones Gimp-a-versary as a celebration of survival came from a friend of mine who's disabled due to multiple car accidents/spinal damage. I liked it so much I've adopted it.