Where do I begin?
I haven't been "healthy" for about 5 years now. Kidney infections, arrythmia, pneumonia, joint pain, "hives", flu-like symptoms, and general malaise. The doctor determined that I need arthoscopic surgery on my knees for torn meniscums and
calcium deposits. I have been treated for clinical depression for 4 years with meds.(Trazadone, Zoloft, and Xanax).
Two years ago I was diagnosed with hypertension (200/180) which is being controlled with meds. (Plendil and Zestoretic)
Nine months ago I was diagnosed with Rhematoid Arthritis and with type II diabetes, which is being controlled with diet, exercise, and meds,(Glucotrol).
Last winter I was just plain ill for months. Yet, my doctor didn't seem to think it was all that serious, so I did my best to do the things that are expected of me, suffering horrible guilt when I was physically unable to meet everyone's expectations. Then in May, after working in the garden during a sunny weekend, I developed an excruciating rash that covered my body from the neck down. The itching was agony, and I scratched
until I bled. The doctor put me on prednisone for 5 weeks. The rash finally subsided, (after all the skin peeled off) but then I developed a horrible rash on my face.
I have always flushed easily, and tend to be red across my cheeks and nose, but this rash was disfiguring. I was embarrased to be seen. I looked up "Rosacea" on the internet, and made an appointment with the clinic to see if that was the problem. My doctor was busy, so I saw his P.A. instead, who looked at the rash history and decided to do a lupus screening. These tests came back positive.
However, I live on an island, and need to travel to see a Rheumatologist, and I haven't been able to do that yet. In the meantime the doctor here is either unable or unwilling to do anything for me, other than prescribe Vicodin for the pain. I will travel to see a Rhuemy in September. Until then, I do my best to get by day to day.
The problem, outside of my body, is the attitude I am getting from family and friends. I try not to dwell on the illness, but quite frankly I just can not keep up the pace I have set for myself over the years. I am so tired of being tired, but when I
push myself I wind up in even worse shape. I am trying to get my priorities in order and I feel that the kids and the house come first. I do not often have the energy to participate in church activities, the local community theatre, and all the "let's go do" things that friends want me to do after a day of laundry, housework, and child care.
I have tried to "educate without whining" those around me, but the illness is either dismissed as not being "serious" or I am called a hypochondriac or a malingerer. I don't expect or want to be catered to or waited upon, I just want folks to know that
if I am not "out and about" it is because I am feeling ill, not because I am blowing them off. If I keep things to myself, I am labled "depressed and antisocial", if I am up front with how I feel, I am "co-dependant and self absorbed".
A friend told me yesterday that she doesn't want to talk about my health because then she is "enabling" me to wallow in self pity. When I told her about this site and other support groups I have found to help me deal with my illness, she chewed me out
for being so easily "triggered" to "attack".
She and others are also very derisive regarding my "list of illness's". If I only had diabetes, for example, they would be
supportive, but I have too many "complaints" to be taken seriously. If I had cancer or even HIV they would be at my side, but with my diagnosis I just can't win. I want understanding, not pity. This is too long, but I am feeling very alone in this. I am tired of crying and being afraid and alone.
Thanks for listening.
