Wednesday, December 09, 2015

May I Have More Spoons, Please?

A little over a year ago, I started having severe back pain. It would be so bad that I would wake up screaming in my sleep. To a lesser degree, I was also having pretty bad pain in my hips and lower back, but I had gotten used to this as it had been happening off and on for several years. I had been to doctor after doctor, and been told it was basically because I was fat. Funny thing was, even when I lost weight, the pain never got better.

But this back pain was different. Steal-your-breath-away, whole-body-electrified, different. So, I started making the rounds of doctors again. Test after test, the humiliation of being told I was fat, insisting that it had to be more than that, finally finding a Primary Care doctor who would listen. (Coincidence or not, this doctor is a woman. All the previous doctors who told me everything was in my head or was just because I was fat were men.) She sent me off for blood work, CAT scans, MRIs. She argued with the insurance companies. She fought for me. I'm so glad she did.

Soon, she was telling me I needed to see a pain management doctor because the MRI and CAT scans were showing lots of degeneration in my spine.  From there, the pain doctor could refer me to a rheumatologist to get more tests done.

Through the pain management doctor (whom I have since stopped seeing for reasons I don't want to get into here), I was referred to a rheumatologist who was finally able to give me a diagnosis. Apparently, all those years of pain I had been having in my hips and lower back were early signs that I had psoriatic arthritis. I have the "fun" kind that likes to chew the bones of my spine and hips. Since the previous rheumatologists I had consulted (male) pretty much patted me on the head and didn't do any real tests, it went undetected. My current rheumatologist (again, female) did tons of blood work, ordered more x-rays, and another MRI and basically spent over an hour in an examination room with me going over my medical history with a fine tooth comb. She's also the one with the eagle eye who diagnosed the psoriasis on my elbows and scalp, which is what led her to my psoriatic arthritis diagnosis.

Psoriasis is an autoimmune disease where your body's immune system attacks the skin. Psoriatic arthritis is where the immune system attacks the bone. I have the kind that attacks the spine and hips. It also attacks the tendon connection points, mostly in my feet and knees, making walking even more difficult on some days - especially in the mornings.

So, now I'm receiving treatment to try to slow down the disease, but there's no cure.  I will be in pain for the rest of my life.  Some days are bearable - kind of like having a horrible headache in your back and hips. But other days...other days are excruciating.  I have days where if I move wrong, I scream.  Days where I cannot walk.  And even on days when I'm not in horrible pain, I'm so exhausted from constantly having SOME level of pain, that I'm just too dang tired to think about even getting ready to leave the house, much less actually going somewhere.

So what does all this have to do with my title?  When I first got diagnosed and realized that I've got a chronic illness, I started researching other people with chronic illnesses. I wanted to know how they cope with everything. A lot of people started talking about something called the "Spoon Theory." So, I researched that. The Spoon Theory was created by Christine Miserandino to help explain to people what it's like to have Lupus, another autoimmune disease. Basically, it says that on any given day, you wake up with only a certain number of spoons. These spoons represent the amount of energy you have. Some days, you wake up with 20 spoons, plenty to do everything you need to do. But maybe the next day you only wake up with 2 spoons. And you never know how many spoons you will have on a given day.  Each task you have to do in a day costs a different number of spoons.  Maybe getting out of bed costs you 3 spoons if that is when you hurt more.  Maybe fixing breakfast only takes 1 spoon. But you have to ration your spoons. Here lately, I have only had 3-5 spoons to spend each day, prompting my question, may I have more spoons, please?

I am currently on medical leave from work. I applied for pay through the sick leave bank at work, but I won't know if it has been approved or not until after I return to work in January. Which means my December paycheck is going to be about  $600 - $1,000 short. If my application for sick leave bank days is denied (their definition of what constitutes a "real" reason to be out of work, even with documentation from your rheumatologist, is ridiculous), I will not receive a paycheck at all in January (since we are paid a month behind). I have a Union representative working with me on it, but I still worry.

I also worry if I will be ABLE to go back to teaching. Maybe it's time to move on. Just the thought of going back is exhausting. But I don't know what else I can do and make the same salary. If you are the praying sort, I would appreciate prayers. If not, I also would appreciate positive thoughts, good energy, or whatever you are inclined to send out into the universe on my behalf. I'm worried about how I'm going to take care of my boy.

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