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.

Rant Thursday - Fatigue Edition

This week's rant, I'm afraid, will be just as brief as last week's. I'm tired, folks. I've been working for two weeks on the same monster report (in fact, I took my laptop with me today and worked on it while I was waiting with Jamie to see his pediatrician. He has yet another ear infection.) So my rant this week is about being tired. All. The. Time. I wake up tired, I go through my day tired. Get home tired. Trudge through the evening tired. Then I go to bed. What do I do when I get there? Stare at the ceiling. Insomnia's a pain, yo. When I do finally fall asleep, it's only to have to get up in four hours or whatever and do it all again. Then I got on the scale at work today and about had a heart attack. But I'm too tired by the time I get home to do anything about it. Being tired all the time stinks. So tell me, when coffee fails, Mt. Dew leaves you dozing and you don't have one scrap of energy left in your body, how do you keep going? Got any secret, sure-fire energy boosters? Please share! I'd love to have some new things to try to get me through my day.

Oh, yeah, and if you have something you want to rant about - please, feel free to leave it in the comments section. I want to know I'm not the only ranting and raving person in the blogosphere.

Physical, Emotional and Mental Fatigue

So, I haven't posted anything significant in quite a while. We're kind of going through a rough patch right now. For several weeks now, I've been in this physical, mental and emotional funk - I'm so tired it's all I can do to keep putting one foot in front of the other. But I'm not just physically tired; everything about me is tired. My brain is sluggish, my soul even feels sluggish. It's like my entire being is enveloped in a fog. I can't concentrate at work, can't concentrate on school work and deadlines - all I want to do is sleep. But, when I try to sleep, my brain is spinning so fast about so many different things that I can't sleep either. It's become a really vicious cycle. And, of course, the more tired I am, the more distractable I am, which means the less work I get done when I need to do it. Like I said, vicious cycle.

I have put a big priority, though, on concentrating on Jamie and making sure that he knows that he's Mommy's number 1 priority. I don't want him to feel like Momma isn't paying attention to him. I don't ever want him to feel like he isn't important to me. I don't want him to feel like Mom was there physically, but not mentally, for him. I remember what that feels like, and it's no fun. Another reason why I'm trying to show him how important he is, is that he's having trouble at school again. He's gone back to emotional outbursts at school, and saying things that quite frankly freak me out. And sometimes, I have to wonder, how do you tell the difference between "make-believe" play, or something else? Then I feel guilty for wondering what I'm wondering, which makes me even more emotionally, physically and mentally tired... Get my drift?

Anyway, I don't mean to dump a bunch of stuff on you guys (my loyal readers), but I just needed to get some thoughts out of my head and down on paper. I guess I feel a little like my blog is my own personal pensieve. If the thoughts are down on "paper" (of a sort), I guess my head feels a little less crowded.

Happy Tuesday to you all.