Re: Personal thoughts on death.

[Guest guest]

I have lupus/RA overlap. About the age of 34 I found myself the sickest I have ever been with this. I had not been diagnosed yet, but always knew that I had something "wrong" with me since I was about 11 due to inflamed joints and skin lesions. At 34 I had had a miscarriage. I did not bounce back. I had multiple joint inflammations, swellings, skin lesions, visual disturbances (everything looked like I was looking in a fun-house mirror), I had fatigue of a variety I have not experienced since in the last 13 yrs. This occurred within a month of the miscarriage. Two Drs said I was in depression from the miscarriage. Changed Drs and said "I think I have Lupus". I have no idea why I told him that, but he took me at my word, did the tests, anti-dna, ANA, SED, CRP...all positive., He called, said come in, and then told me I had autoimmune disease and I would always have it and that there wasn't a lot they could do. That was 13 yrs ago...a lot has changed. I thought I was dying and surely felt I was dying. I ended up in bed in the fetal position for days at a time, unable to uncurl my swollen fingers, walking stifflegged because of swelling in the knees and finding it difficult to handle any normal daily activities. Breathing was hard as my lungs were affected. They did put me on antiiflammatories. I made a few phone calls from my bed and asked friends to put me on a prayer list and to not stop praying for me until I told them to. Since I never told them to stop, I sometimes imagine that someone, somewhere is still praying for me.

What I learned eventually, and this was before I was online, was that this is a flare and remission disease and what I was experiencing was a severe, long lasting, debilitating flare. But I had hope. A remission was possible. And of course, by summer, as has been the case every summer for the next 13 yrs, I was some better. But during the worst, my fear of death and leaving four small children and my husband behind was profound. This is where faith came in. Faith, in a vision, came to me, that no matter what, I would not be alone at the moment of death, even if no human was with me, I would not be alone. My waking vision made it clear to me, that as I come through other situations in life, this last transition on earth would not be without help. I relaxed. I clung to this memory of my vision for a long time, and brought it to the fore anytime I was beginning to doubt or be afraid of the future. What I had experienced was not depression but a real, physical, biological attack of my immune system. That helped to know that I was not crazy. Even if a "faith vision" sounds crazy, the proof is in the pudding, and I began to make a better pudding with my life. I have had flares and remissions off and on over the years. Things got bad again in 2002 and I had to have multiple surgeries on my legs; bone grafts, screws etc to help with the permanent damage to my knees and I was put into a flare again by the surgeries.The healing process was so slow that frankly, I was willing to let go of life. I must say that this time, with the kids being more grown, having lived some more useful years, a husband that I trust to handle things if I should die before him, I had more relaxed thoughts about death. And I keep at the fore of my thoughts, that I will be helped and make it through the transistion from life into death into translated life.

That's my story and I'm sticking to it. Oh...by the way, doing pretty darn good these days. Winter flare is milder than it has ever been. And have not taken disease modifying drugs since summer. Most of you know that my labs are normal/negative since summer.

Started CR without ON in April...started CRON in summer.