I have had several people, including doctors that have told me that I am a very good patient, and that I deal with having a chronic illness pretty well. I am very meticulous about my medication regimen. I know what medication I take, the milligrams and why. I ask questions before procedures, and I am not afraid to tell a doctor no if I am not comfortable with their method of treatment. I have been through a lot over the last 13 years, but by no means was I always this way. It wasn’t that long ago I was in the dark with no flash light. I have learned to adjust to the “darkness” out of necessity. My only hope and goal was to LIVE!
Lupus is an unforgiving disease. You get a diagnosis on Monday, and by Wednesday you barely recognize the person in the mirror. My face became more round and changed into what is known as the “moon face” with flattened facial features. Hunger seems to never subside, and it wasn’t long before my figure started to resemble that of a spider with a rounded abdomen with arms and legs sticking out. All of this was due to inflamation and the high doses of steroids. It was hard to prevent because I was in so much pain just walk to the bathroom, let alone trying to walk laps on some bodies track. Just the thought of it would make me want to cuss someone out!!
The changes are very hard to deal with. It is no wonder that many Lupies struggle with depression. How would you feel if you woke up one day and your life was TOTALLY changed. One day you are able to walk, the next day you can’t. One day you can fit you favorite pair of jeans, and the next day you can’t pull them up past your thighs. One day you can take a shower on your own, then the next day all you can do is sit there while someone you just met earlier that morning is giving you a sponge bath. It is hard to all take in. I get a little misty just remembering those dark days.
After much sadness, depression, anger and then acceptance, it was time to deal with my “new normal”. I may never look like my pre-lupus self ever again, but I learned how to work with what I have. My clothes may be a bigger size, and I may not be able to wear my favorite dress again, but I can still rock an outfit with the perfect shoes and accessories. My hair fell out, but my husband hooked me up with a tight cut until my hair was able to grow back. I can’t run the miles that I use too, but I can flop around the pool and still burn a few calories without feeling like I am about to die. I had to learn I can still be me. Lupus can’t change that. No matter what diagnosis I was given, it couldn’t change my heart, my dreams or my desires. I can enjoy the same things in life, it just has to be executed differently. Once I realized that, I could deal with the diagnosis of a disease that may never be cured. I didn’t get to this point over night. It was, and still is a fight everyday to not allow myself to become lost in depression and hopelessness, but I have to keep on living, or keep on dying. With an illness where control is relinquished without consultation, it is the one thing I have control of.
The other thing that I could have control over was my medical care. I researched all I could about lupus. I learned about my medications and asked why they were prescribed. To make sure I am at my best, I take meds and I don’t miss a dosage. I don’t put a pill in my mouth that I do not know what it is. When I am not feeling my best, I make sure if I have a busy day, I give my body adequate time to recover so I don’t spend a week on strong pain meds trying to catch up on my pain. I keep up with new treatments and ways to make my life easier. I had to become my own advocate. I am the only one who can know how I am feeling. Sometimes it is a hit, others may be a miss, but every decision is an informed one. It is talked about and decided by me and my doctors. I don’t have to agree to procedures that I am not comfortable with just because the doctor told me to. After all, it is my body, not theirs.
Everyday isn’t always filled with smiles. I still have some days where I feel a little overwhelmed with the frustration of a body that won’t allow me to do what my mind wants too. Depression still knocks on my door, and sometimes it is kicked opened without permission, but I know longer feel like I have a hopeless future where I am just existing. Lupus is not my death sentence. It is up to me whether to keep on living, or to keep on dying. I choose to live!