Sunday, October 18, 2015

A Post I Never Imagined Writing

Once again, it's been awhile. There's been a lot going on since my last post and I think I'm finally ready to set it all out. There's been a lot to process; there's more to come that I can't imagine yet.

I last posted the happy news that my Isabella Duncan shawl pattern is available for purchase through Ravelry. That was in May.

I woke up on the 12th of June and knew immediately something wasn't right. My arms and legs were shaking. Not shivering, shaking. Despite the lack of light at 4am, I could see them moving without my permission. I shut off my alarm and laid back down, hoping whatever was going on would pass off.

It didn't. At around 5, I unsteadily got to my feet beside the bed (at this point still figuring I'd be going to work), and promptly found myself sprawled on the floor.  The shaking was so bad I couldn't stand up on my own.

Lucky for me, my roommate heard my collapse and rushed in to see what had happened. She found me sprawled on floor, face first. Had I tripped? Slipped? She asked as she helped me get back into bed. Are you cold? My answer to all these questions was the same: No.

After catching my breath and realizing I was still shaking, I called work to say I wouldn't be there. I explained I had just collapsed on the floor.

I waited a few hours to go to the hospital. I didn't want to risk falling again and the thought of trying to go downstairs frightened me.

There was the usual wait at the ER. As I explained to the triage/admissions nurses what I was experiencing, they did a finger prick bloodtest to check my blood sugars; they were normal. There were also the standard blood pressure and temperature readings. All normal.

About 2 hours after that I was called in to sit inside the ER and probably 20 minutes after that I saw the doctor. As everything was normal and the shaking was subsiding, I was declared dehydrated, given a note for work and told to go home and rest and drink lots of water. That was it. No xray for the fall. No further blood work. "If it happens again, come back." Not even told to follow up with my own doctor.

I dropped off the note at work and went home. I drank lots of water and pretty much parked on the couch watching tv all day. Afterall, that was doctor's orders.

Next morning, I was back at work. By the end of my shift, I could feel something odd in my lower back. That was all; just an odd feeling, like a lump. But when I felt with my hand, there wasn't anything there.

Within a week that lump feeling intensified. It became a ball, sitting in my back and it would shift, pressing into my spine and causing pain to shoot down into my upper legs and up almost to my shoulders. And once the pain shot down, a stiffness would come over my legs, from my hips almost to my knees. At the same time I noticed my first toe next to my big toe on my right foot was loosing feeling. It wasn't changing color, so I knew that blood was getting to it, but it was numb.

I called and made an appointment with my doctor.

The pain continued to increase, the stiffness lasted longer and there were days I could all but waddle to get home after work. I went from walking up to work in 15 minutes in the morning, to it taking 30minutes to get home again.

My doctor prescribed anti-inflammatories and ordered bloodwork and x-rays.  She was not pleased to see the lack of tests done when I was at ER. She could not believe the assessment of the ER doctor. But now things would be looked at; time to move forward.

My blood work came back with high levels of enzymes in my liver. Not surprising given my admission of taking more than the recommended amount of acetaminophen to try and dull the pain while at work. Nothing else was on the blood work and the xray was clear. I was prescribed muscle relaxants in addition to the anti-inflammatories and a request for a CT scan was put in, as well as for an MRI. My doctor believed I had two things going on: a back injury from the fall and something going on with my nervous system that caused the shaking (that caused the fall) in the first place. And most likely the numbness that was now in my two middle toes on my right foot and starting to happen in one toe on my left foot.

While waiting for the scan, my inability to move increased and decreased daily. Some days I made it a couple hours into my shift still able to walk and bend; other days I couldn't stand without holding onto the counter after 20 minutes. My coworkers wondered at my sanity being there at all.

The CT scan revealed a protruding disc in my back; definitely the culprit causing my back pain and the "ball" shifting around in there.  A request to be seen by a spinal specialist was sent in. And I was medically removed from working.

I settled into a sort of home routine based on how well I could get around on a given day. The days I could get to the living room/kitchen, I did simple things like wash dishes and put out food for the cats. The days I felt too precarious to try the stairs, I hung out in my room and knit or read. The days I was in too much pain to sit up, I lay in bed and watched the world from social media on my phone.

It wasn't long after that I began developing nerve pain. What an innocent sounding term. It's different for each person, but all agree it's horrible. Mine is akin to cattle prods, I figure 20-50 of them depending on the day, being applied all at once to the bottom of my feet, and set off altogether every few seconds. Most times the pain ends around my ankles, but there's always a few that go right up to my knee, at times my hip. I looked it up online and saw that vitamin D helps; I had some calcium with vitamin D pills so started taking them.

By this time, the numbness had taken over all four small toes on my right foot and the bottom of my big toe as well. On my left foot, the toe next to the big toe was also numb and the middle one was like a blinking Christmas tree light; one day normal, gone the next.

With the increased numbness and nerve pain, I started having the weird feeling of water being poured on my right thigh. The first time it happened, I thought I knocked over my glass of water, but my leg wasn't wet. A few days later, it happened again; I didn't have a glass of water. It happened every few days or so and never lasted more than about five minutes. Just another thing to get used to.

I received the letter about my MRI: October 26, 2015. This was July. It's the hurry up and wait so common in health care these days. You jump through hoops waiting for the appointment and then get to wait some more for it to actually arrive.

I had a doctor's appointment not long after. I described the increased numbness and then I mentioned the weird water on my leg feeling. My doctor was concerned. That odd feeling is a phantom sensation, a definite sign of nerve damage. She made note of it on my file and confirmed that I had my MRI appointment. And she told me that the best treatment for the nerve pain was vitamin D; she recommended 2000IU in the morning and in the evening. If the pain increased, it was safe to take more in between to help ease it.

I did ok through August and most of September. I got the letter for the appointment with the spinal specialist/surgeon: December 16, 2015. Another hurry up and wait, but I've come to expect that.

My bad days have been increasing. There have been days recently that I could not walk without holding onto walls. Even that didn't feel entirely safe. The phantom sensation has worsened; it now feels like hot water poured on that spot, followed by burning that lasts anywhere from 20 minutes to 3 hours. It happened most frequently at night but no time is really a safe time from it.

Last Tuesday, I bought a cane. I don't want to fall and injure my back worse or have anything else injured. I'm no faster walking with it but I'm a bit steadier. And that little bit of safety is helping. I'm able to get up and do a bit more for myself. To feel normal and not useless.

That's really been the worst of it all. The emotional side of it. Feeling helpless and useless. Knowing that six months ago, I could walk anywhere, dance, had no physical restrictions on me or what I wanted to do. I could walk to work, literally run around for 8 hours, walk home and put on my dance shoes for an hour or so and feel accomplished. Now I'm doing good if I can get from my bedroom to the couch.

There have been more times than I care to admit that I've just burst into tears out of frustration with it all. What is this and why is it happening? Can I be fixed? I'm most likely not going to be able to return to the sort of jobs I've always done (retail or food service), so if I'm able to work again, I'll need to retrain. For what, I don't know. The thought of an office job has never appealed to me. But the thought of not being able to look after myself scares me enough to think about it.

I hate this whole situation so much. Half my identity has been as a dancer. Not much of a dancer if I can't even walk. And exactly what do you do when half your identity disappears? Pretend you never were? Act like it doesn't matter even though all you really want is to put on those shoes and perform again?

So here I sit. Plagued by the thoughts of what was and what might never be again. The MRI is in 8 days. I'm not sure when the results will be in. There's times I wonder if I really want the answers. Same with the appointment with the specialist; do I want to know the answers? But life moves forward and I'll get the answers. Whether they'll be something I want to hear or not is another story. Another story for another day.

So that's my catch up post. I'll do a run down of the knitting I've been doing since that's about the only useful thing I can do during all this. Pictures and FOS! And a lot of WIPs. Maybe I'll start writing with more regularity. I said maybe; this *is* still me afterall.


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