Today I saw the doctor and had another injection in my eye. I've lost count of how many injections I've had - enough to know that the thought of it is so much worse than the reality. Enough to know that it might be uncomfortable, but it won't hurt. Enough to know that it will bring me quick but temporary relief from my pain. Enough that it should feel routine, but injection days still bring me to tears. Not from pain or fear, but from the sadness of knowing that Brian isn't there with me. He came to my appointments with me. He was always in the room when I had the injections. And he was always - even when horrible Dr. Schoch didn't sufficiently numb my eye causing me pain and permanent damage - a calming living presence letting me know beyond a shadow of a doubt that everything would be OK.
I don't know that anymore. Today I had an injection. Tomorrow morning have another discectomy. Dr. Prall agrees with me that both my eye and my back problems probably stem from an auto-immune condition causing my body to attack the collagen in my retina and spinal disks. My initial relief that a doctor finally listened to me and confirmed my suspicion was quickly followed by incredible fear.
We've been trying to manage this problem for for almost three and a half years. If the Humira doesn't control it, I don't know what medical options remain. With my eye, I've already had cataract surgery, so if we can't control the edema, I can get steroid injections periodically to reduce the swelling and pain. What are the options for my back?
This is my second discectomy on the same disc in less than ten months. If the Humira isn't effective, the disc or others can bulge again. The pain has been unbearable - even though many people, including those closest to me, think that I have no tolerance for pain and like to be a drama queen. The incision pain from the surgery will be horrible for a few days, then I'll slowly recover and gain strength. I'll likely miss 6-8 weeks of work and income. I need to go to rehab because I can't come home alone. Despite my pain I had to beg doctors for a quick surgery, deal with insurance, research recovery options, and make plans for myself and my pets because I'm alone - without Brian I have no advocate. And though it wasn't easy, I did it, and it will be fine. But what if there is a next time? I'm terrified to even think about it! If the Humira doesn't work, will I be facing another back surgery next year?
I know that many people would tell me to relax and not worry until it happens, but how do I do that? This type of autoimmune condition has no cure. If the drugs can't get me and keep me in remission, these problems will repeat, and I don't know what I will do. This has been my biggest fear since Brian died - facing the very real risk that I might be visually impaired or compromised in terms of mobility, alone, and in severe pain.
What will I do? Where will I end up? How will I live, and what kind of quality of life will I have? Maybe I shouldn't let my mind wander. But part of surviving, part of managing and taking control is having a plan. I don't know how to plan for a future of extreme pain and limited ability. I don't know how to face those possibilities alone. I don't know that I want to face those possibilities at all.
I am terrified and I feel alone. Brian would tell me to be strong and to ask for help, and I do, but Brian also believed that quality of life was important. Alone, frightened, in pain - what kind if quality is that?
I wish he was here to help me sort through these thought and fears. I'm afraid to discuss it with anyone, and I am terrified.
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