Almost two years ago I was diagnosed with an autoimmune disease called undifferentiated connective tissue disease. My rheumatologist assured me he didn't make that up. It is similar to Lupus, but I do not have the internal organ damage that people with Systemic Lupus Erythematosus (SLE) suffer. What I have is a bunch of odd-ball symptoms because my body thinks I am a Frankenstein-like patchwork of transplant tissue, and therefore is in attack
Fun facts about my autoimmune disease for all my nursing people out there: I am allergic to the sun, therefore I get to wear my marvelous hats and carry an umbrella in the summer sunshine. And y'all thought I was just being fabulous in my pictures!
It makes me dumb in a "toddler just ran into your room at 3am screaming with a bloody nose kind of stupor". You are awake, but if you had to put a puzzle together for Survivor your tribe would vote you off that night. Raynaud's means that my hands and feet are not only cold and corpse-like, but they hurt when they clamp off. My body doesn't like my thyroid either, so I have Hashimoto's thyroiditis and will be on Synthroid forever. The good news is "Hashimoto's" is fun to say with a Japanese accent in a louder than acceptable voice.
My body also hates my joints, so it's like I constantly walk with the feeling of sprained ankles/knees. Then they swell to not-quite Hillary Clinton status, and that hurts too. I have also hit the genetic jackpot with early onset of osteoarthritis. That is why I had my knee replaced a year ago. THAT knee was my "good" knee before I knocked the cartilage off it. The other knee will need to be replaced in about five years, or so. Oh, my hands have arthritic changes in them too, which has started affecting my ability to open jars, push syringes at work, and stuff like you see on mid-day commercials for old people.
Okay, so what do I do about this? Complain. Just kidding, although I do feel like I complain a lot. I take medications to knock my immune system down; prednisone to make me feel better, but make me irritable too (we won't talk about the weight stuff); and then there is the dieting. Dammit. Before now I had never been on a diet a day in my life. Now I hate food. I hate it because a lot of it makes me sick.
I cut out gluten, which was remarkably easy in Boise. For two weeks I cut out carbohydrates except fruit because I had gained 10lbs from the damn prednisone and caramel popcorn obsession. Both of those are gluten free. Okay, so I lose the poundage and feel better. That REALLY sucks because now I know in order to feel better I have to cut out a lot of carbohydrates and have all these "rules" for eating. I will find an unhealthy avenue to ANY diet. I have figured out how to make the best gluten free buttermilk biscuits ever, and I eat grits with two tablespoons of butter and Splenda (see, moderation) in the morning. I find if I eat my carbs in the morning, I do alright.
I think if you ask anyone with an autoimmune disease what the worst part of their "diseaseness" is, they would say it is that they look normal. I happen to look quite fabulous most of the time. All of us Lupus-like people have had someone say to us "But you don't look sick". That is the most dismissive thing you can say to... well, anyone. Like if someone was suicidal, would you say "But you don't look sad"? No. Granted, I know there are dumb people out there. I'm a nurse after all. They are my job security. My disease war takes place inside my body. My boss is amazing and can tell when I "wilt" at work and has sent me home. If I am "wilting" I have way overdone it. I tend to keep powering through because it is embarrassing for me to admit defeat from a disease that doesn't look like a disease. I'm worried people will think I'm "faking it".
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| My round, prednisone face |
Yesterday I got home from work and picked Natalia up from school about 4:00 pm. I could not keep my eyes open. I went to bed at 4:30 pm in my work clothes and false eyelashes and didn't wake up today until 9:00 am today. That is what it is like to have an autoimmune disease. You don't even see it coming. Just BAM. You are out of commission. I didn't even get up to eat. That is very telling for those of you who know me. I like food. A lot.
I am definitely a changed woman. When I was diagnosed and then had my knee replacement I had to face the harsh reality that I could never be a floor nurse again. My body cannot do that anymore. Ever. I will not "get better". This isn't like having a cold. I will gradually get worse. I actually have gone through stages of grief because of this. What it has taught me is compassion. I was so snarky and judgemental toward patients who had chronic pain issues. You know why? Because I feared being in that situation. It's a very vulnerable place to be.
I know so much about autoimmune diseases now, and there is so much more to learn. People with autoimmune illnesses want to be heard and understood. I can offer that to my patients now. My "plot-twist" of life has led me to becoming a Nurse Practitioner. I had lost my enthusiasm for nursing when I became burnt out of the ER. I have found my passion again. Some day I am going to have my own clinic in a neighborhood. I am going to take care of you and your families. I am going to have a rescued dog who is a therapy animal that is not only the clinic mascot, but an active provider as well. The dog will calm the kiddos during vaccinations and make everyone happy. No, it won't be Ripley because he is a jerk to everyone but the Lacows. He has to stay home.
I'm rolling with my punches. It has taken a year, but I can see how blessed I am to have all this happening in my life. God has given me an opportunity to find my compassion, become the nurse I had dreamed of being, and understand that I am so much more than my profession or body. Yes, I get frustrated and sad when I have a series of flares and bad days. I can tell you that deep in my soul where everything counts I am happy and loved. Everything else is just temporary.
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