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. ;)

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. 

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. 

My Story- RSD/CRPS part I, the basics

November is RSD/CRPS Awareness Month. I know I mention it a lot, as it is my biggest physical impairment, but I don't think I've ever given a proper run down on it. So throughout the month of November, I'll be posting about the basics, treatment options, coping, all the fun stuff.

*

Basics:
CRPS, or Complex Regional Pain Syndrome, is the current name of the disease. It is a rare neurological disorder that affects the Sympathetic Nervous System (SNS), wreaking havoc on the body and causing extreme pain. In fact, CRPS is currently recognized as the most painful non-terminal illness as ranked on the McGill Pain Index, with a score of 42/50*. For reference, unmedicated childbirth is about a 35/50. The MPI was done in 1971* as a way of creating a reference point for physicians but has been updated over the years.

*

CRPS is a response to an injury in the body. The injury can be as minor as a stubbed toe or as major as a surgery or spinal damage (note: a very small percentage of patients have no known starting injury). Typically, when there is an injury, the nerves respond by sending out pain signals. Once you heal, the nerves stop sending pain signals, so you're brain no longer fears for its' safety. When CRPS develops, the nerves never stop sending pain signals. In fact, it becomes a viscous cycle and it feeds on itself as it endlessly loops.

The easiest way to think of it is this- ever slam your hand in a car door? That moment where you're bent over, clutching your hand, in so much pain you can't function? Now imagine your nerves become trapped in that moment, looping it endlessly.

CRPS is typically a localized disease. It will often set into the portion of the body where the injury is. In my case, I developed CRPS following Hip Surgery #2, and it was originally confined to my right hip. CRPS, though, enjoys spreading, especially if there is a further injury to the body. So with every passing surgery, the area affected by the CRPS spread and I now have it from my waist to my toes (moderate on the left side, severe on the right). CRPS most often affects extremities, but it can, and does, spread to include the entire body and internal organs. I've heard of cases where it has spread to the lungs and digestive tract.

Both graphics, as well as some dates, came from the website RSD Hope, which is one of the best information and support websites out there for RSD/CRPS patients. 

Tomorrow: Symptoms. 

Handy Woman

Hi, my name is Cassie, and I love power tools.

Wait, this isn't Power Tool User's Anonymous? Damn.

I first used a framing nail gun when I was all of 11 years old. It was pretty damn comical, actually, since I wasn't quite big enough to handle the recoil, so every time I put a nail in the floor, it would push me back a foot. Picture it- a pipsqueak of a tween with a nail gun that weighed 1/10th of her body weight. I'd lean over, put a nail in the floor, fly back a foot, waddle forward 2 feet, and repeat.

It's easy for me to know why I love tools so much. They allow me to create, to change the world around me. Things take me a lot longer to do these days, with the whole being disabled thing, but I find that if I approach a project slowly, surely, and in pieces, I can still do quite a bit. And well, what I can't do I can often bribe my parents into helping with. I've been catching up on some planned projects this last week, so I figured I'd picture bomb the blog for fun.

First up, I finally managed to get rid of the hideous vertical blinds on my back door. I am not a fan of those things. The replacement is a system from Ikea that consists of 3 off white lace panels, each in it's own track and able to slide the full length of the door.

As I was trimming the ridiculously long lace panels, I realized I had more than enough fabric left over to cover the glass fronts on a cabinet in my kitchen. It's a liquor cabinet with glass on both sides, viewable from the kitchen and the dining room. I don't drink, so it's packed full of coffee cups and reusable shopping bags. Useful, but not so sexy. So I sexified it.

Before:

After:

Steps to doing this (if you're interested):
1. Take the door off the cabinet.
2. Remove glass from door by removing the 4 small plastic pieces holding it in.

 3. Clean glass.
4. Cut some 3M Clear mounting strips (for those removable hooks) into very skinny little sections.
5. Apply clear adhesive strips to glass in several spots along each side (you can skip over where the plastic tension piece for holding in the glass goes- it will hold up the fabric for you there).

6. Attach lace panel to glass, watching the tension to keep the fabric taunt. Only removing the backing from the strips as you get to that side. Do each of the 4 sides (right, left, top, then bottom), then do the corners once the sides are anchored.

 7. Screw glass back into door, then attach to cabinet. Voila!

Last project of the week thus far as been finally assembling the drawers for the Ikea storage unit in my craft room. Now my pattern drafting supplies and fancy sewing scissors have a home.

Next up: finishing the kitchen table and saving my fall garden from the sudden and early winter.

Remicade and RSD/CRPS

As part of my health issues is weird autoimmune nonsense (technical diagnoses are Seronegative Rheumatoid Arthritis and Unspecified Connective Tissue Disease, aka "We have no clue what's actually wrong"), I take immune suppressing medications. I currently use 3 different ones: Azathioprine, Prednisone, and Remicade. The Azathioprine controls the issues I have with swallowing, helps prevent weight loss, stimulates my appetite, prompts saliva production, reduces my sun sensitivity, and a few other things. The prednisone is meant to be temporary- I'm actually in the process of coming off of it. We started it to help control things while I made the switch from methotrexate (an extremely common immunosuppressant) to the new meds and I'm very slowly tapering off.

Remicade is a biologic medication. You see commercials for biologics all the time on American TV these days, for some odd reason. The typical order of meds tried for autoimmune disease is Plaquenil (an antimalarial that modulates the immune system versus straight up suppressing it- it makes me vomit profusely), then methotrexate, sometimes the next step is Arava (not recommended for women with intact, working reproductive organs), then on to the biologics. Biologics leave you with little to no ability to fight off infection, they're very expensive at about $3,000 per infusion, and they require extremely close monitoring. Commonly prescribed biologics include Humira, Remicade, and Enbrel. Some come in an autoinjector and some must be done via a several hour long infusion at a chemo infusion center. I'm lucky- my rheumatologists office has it's own infusion room complete with goofy TV playing and very friendly nurses who know their patients inside and out.

Today was Remicade infusion day. I go every 8 weeks and see the doc, have blood drawn, then have a 2 hour infusion. We upped my dose today by 33% in an effort to get better control over the arthritis. Currently, the arthritis is very inflammatory, causing massive fluid buildup in every single joint in my body. The biggest hassle, though, is the elbows and wrists. The fluid build up impinges my nerves and causes pain and numbness in my hands and arms. Drives me bonkers, since it makes typing, net surfing, knitting, spinning, and even cooking more difficult. Since today was my 4th infusion and most patients see big results by 1 week after the 3rd, we upped the dose some. I've got my fingers crossed that this works.

The weirdest part, though, of the infusions is that once the Remicade hits my system, my RSD/CRPS pain flares immensely. I actually have to take extra pain medication in advance of the infusion to cope with the pain. The pain levels take about 1 week to completely normalize. Considering the fact a normal day for me means pain levels at a 5-6 out of 10 and a bad day is a 6.5-8, a pain spike means complete hell. I figure I'll spend the next week working on my design portfolio, ensconced in my very comfy recliner.I just wish I could get some answers as to whether or not this is a normal reaction to Remicade for an RSD patient. But since RSD is fairly rare and Remicade is neither for the RSD nor a first line drug, finding an RSD patient on Remicade has proven impossible thus far. My Rheumatologist has no clue either. La sigh. The fun of a rare disease.

Canning

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!

Jam:

Pears:

Tomatoes: