Sunday, October 10, 2010

Just Rambling Thoughts

It is October. Fall air came and went just as quickly. We're suppose to hit 90's again today. I'm thankful the 100's are gone, but the heat still makes me so sick. For some reason I don't tolerate heat well. I can handle the cold better. Most lupus patients can't tolerate cold weather. Bring on the cold!! I'm ready and waiting.

This week starts the month of Doctor visits. Wednesday is the Pulminologist. New doctor for me. Okay now that makes five doctors now. Can't keep up with them all. Pulminologist, Rheumatologist, internal medicine, thoracic surgeon, gastro doctor. The following Wednesday is my rheumatologist and the last Thursday of the month is my follow up colonoscopy. Since insurance wouldn't pay for the follow up immediately (which it should have done because of results), I had to wait a year and a half to do the follow up. You'd think finding precancerous polyps would qualify for a faster follow up.

Sometimes I wonder if it is worth it at all. Twenty meds, five doctors, Systemic Lupus plus Aortic thoracic aneurysm (just below the heart - 4.7 cm), mononeuritis multiplex (permanent nerve damage in both feet and left leg), Insomnia due to lupus, Depression, arthritis in spine, degenerative disk, congenital spinal stenosis, Hypothyroid, Fibromyalgia, Osteoporosis, Osteoarthritis, TMJ, Chronic Irritable bowel syndrome, Sleep Apnea. I'm tired of being sick and tired. Mostly, I'm tired of struggling alone. I'm so tired of crying in pain at night and there's no one to help me when I need something. I'm tired of not having the strength to accomplish anything in the day because I'm so drained I cannot function more than two hours at a time.

I'm tired. I'm tired. Maybe it is time I just stopped. All of it.

I want to be able to go outside and walk again. Sit in a bookstore and read or just get outside and watch people go by. I can't do that where I live right now. It is unsafe. I only go outside now when Sandy and I go to the store or the hospital/doctors. I feel so trapped. Imprisoned in a world no one would want to live in. Afraid.

I am praying for a miracle, one that will provide a way for me to move out of this place into a safer one in January. Whether here or farther away, I have to get out of this situation. I can't bear it anymore. My doctor once said environment plays a key role in the progression of my illness. This has been the longest year of my life. I've grown weaker and sicker. My soul has lost its will to thrive.

This is also the anniversary of my brother's death. He died October 27, 1994 from Cancer. He loved Halloween so much and I can't help but love it, too, because of him. He always made it the best memory of my childhood.

I miss him so much.

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