Wednesday, January 30, 2013

Still Here

Still here..still dealing with a truck load of physical pain. MRI is coming up so I hope it gives some answers without bringing bad news. Does that make sense? I want answers but I worry what those answers will be.

I'm also quite angry at myself because I know I had a hand in whatever changes are going on. I didn't bring them on but I haven't done all I could to avoid it either.

In the past few years I have done waaaaaaaay more physically then I should have. Weight limit was no more than 15lbs and I routinely lift more than that. I mean seriously, a bag of groceries, a bag of dog food, a box of cat litter...all necessary and all more than 15lbs. I was a single mother with two young children and a home full of responsibilities. Yes, I knew each and every time I did things I am not supposed to be doing from a medical standpoint because my back would scream at me afterwards. But I had to do things. This was true even back shortly after the diagnosis. I was good the first six months or so. Following the rules and being careful. But back then, Dakota was in school and I had a two year old and a five year old to care for. Bath times meant leaning over the tub, hurt children meant picking them up and holding them until they were better. Errands needed to be done and chores needed attention. I guess what I'm trying to say, is I had a life with young children to live and I did.

The move this summer. If I had had the money, I would have hired packers and movers. But I didn't. I did 80% of it all alone. And I knew it then, and would tell myself regularly how I would end up paying for it at some point. But denial is a very strong thing.

Welcome to pay back time.

My muscles spasm so much that you can see them twitching under my clothes. The ones in my tummy I nicknamed "the baby" as in "the baby is kicking" because it looks, and feels, exactly like it did when I was pregnant. The numbness comes and goes and travels about on a whim. This week I have had a spot on the right side of my nose that feels like a shock (think touching a live wire for a second) that has been going on for four days now at intervals of 5 to 12 seconds. Yes, I count because In fear some times that it will make me lose my mind. Sometimes, but not always, shifting my weight from the right side of my body to my left (like when I'm sitting or laying down) will stop it for a time. But never for long. I have very little strength in my hands....I can't open a jar or even take the lid off my travel coffee mug. I drop things too often.

The pain has reached a threshold where I doubt my ability to take it much longer. When the kids are at school, or at Dakota's, I pull deep into myself and rarely talk. Saving all my energy for when the kids are here. Try as they might, they don't understand how I feel so I do my level best to suck it up so I can care for them. They are, after all, just children. But it takes all I have.

I cry in the middle of the night when the pain is unrelenting and refuses to allow me to sleep. The pain pills take a small edge off but, over all, aren't strong enough or prescribed at frequent enough intervals to do much. Still...I don't alter the dosage and I try to wait as long as possible in the day to take it. I'm afraid to call in a refill for fear of being labeled a drug seeker and not being given any help at all. My Syringomyelia support group board is full of people who say their doctors don't believe their pain is real, that no one will help them, that their doctors don't even know what SM is.

I've done some research and found the names of two doctors in Portland with SM experience. And two more in Seattle. It doesn't mean my insurance will approve me seeing them though. Knowledge on SM in the medical world is still in its infancy. That alone scares me because when the time comes that I am sent to a neurosurgeon, I want someone who is familiar with the disease. I learned the hard way that I should have done that when I first broke my back instead of trusting my family doctor, who, when asked a year into it, how many other patients with broken backs she had seen answered "you are my first". Lesson learned. I need specialists who know the condition. I would prefer one who HAD the condition but chances of that are slim to none.

So basically, I am not doing well. And that leaves me feeling more emotions that I can name. It's great that the MRI is upcoming but then what? It's not like my pain is going to magically disappear once I've had the test.

Time will tell. It always does.

I'm not re reading this so please excuse the typos and grammatical errors. :)

1 comment:

Tanya said...

Casey, have you spoken to the Dr. about lifetime pain management? If there is nothing they can do they need to get you on some true pain meds so that you are able to function.