I was a sickly kid growing up, always with a complaint of some kind it seemed. I suffered through numerous "horrible sunburns" that left scars. I have a "false-positive" RPR, (false-positive syphilis test, indicitive of the Lupus Anticoagulant Syndrome) and suffered all the emotional scarring that goes with it. I have experienced the "I must be a hypochondriac" stage, since everyone around me thought I was. FORTUNATELY, I worked at McBride Clinic in Oklahoma City, well-known for their Rheumatologists and treatment of their patients. After a week-long lake outing, I had a "royal" case of photodermatitis,(sun-enduced skin rash) and asked one of the nurses if she knew what it could be. She in turn, asked her physician to look at the rash. I had worked in health-care for years and had no idea a physician could take such a detailed medical history! I was then diagnosed with Systemic Lupus. It has taken many years, but we finally have a handle on my meds, and I am learning what I should and shouldn't do ~ notice I try not to use the word "CAN'T". I am also learning to say "NO", which has been the most difficult thing for me to do! I am very fortunate that my family and my husband's family are so supportive and caring. Yet, that doesn't mean my adjustment to lupus has been without turmoil. My better half and I both went through the grieving process with its various stages of denial, anger, false-hopes, etc...... Now, my husband advises me if he thinks I should back off from something, but he also realizes if I over-excert myself, it is by my own choosing and that I must decide if the outcome is or will be worth the consequences. Physically, lupus eventually took away my ability to work. It got to the point I had to choose between a career and having the energy and well-being for any kind of a private life, as I couldn't manage both. I wish there was a way to make our lawmakers endure the process of applying for and proving Social Security Disability claims. And top that with how someone with lupus feels on any given day and they might just get an idea of what we go through, and stop making it so difficult for us to prove that we are truly disabled by this disease!!!!
It has taken many years, but we finally have a handle on my meds, and I am learning what I should and shouldn't do ~ notice I try not to use the word "CAN'T". I am also learning to say "NO", which has been the most difficult thing for me to do! I am very fortunate that my family and my husband's family are so supportive and caring. Yet, that doesn't mean my adjustment to lupus has been without turmoil. My better half and I both went through the grieving process with its various stages of denial, anger, false-hopes, etc...... Now, my husband advises me if he thinks I should back off from something, but he also realizes if I over-excert myself, it is by my own choosing and that I must decide if the outcome is or will be worth the consequences. Physically, lupus eventually took away my ability to work. It got to the point I had to choose between a career and having the energy and well-being for any kind of a private life, as I couldn't manage both.
I wish there was a way to make our lawmakers endure the process of applying for and proving Social Security Disability claims. And top that with how someone with lupus feels on any given day and they might just get an idea of what we go through, and stop making it so difficult for us to prove that we are truly disabled by this disease!!!!
As for means of coping with the emotinal stress of having a chronic illness, I have tried various Self-Help and Support Groups, but have found, for me, they are tooooooo depressing. These are great resources for someone newly diagnosed, but not for me ( I've been at this for 12-15 years, it's been so long I can't remember when!) My primary symptoms include unending fatigue, headaches, joint pain (mainly ankles, hips, knees, elbows, wrists), GI problems (from the meds), and osteoporosis ( probably a combination of an early hysterectomy and years of Prednisone use).
I feel fortunate that I have received satisfactory professional care by well-educated physicians, and that my family is helpful and supportive. I know there are many people out there much worse than myself, and I count myself very lucky. There are days when I give in to my little "pity-parties", but those are seldom. Mostly I try to stay busy, do things that give me a sense of accomplishment or a "warm fuzzy feeling". Just this Spring, I got a puppy who has been a real joy to have! She gives unconditional love and the best kisses ever! She has been alot of company to me while my husband is at work. Since our son is grown and on his own, it used to get pretty lonely around here. Now, she takes up so much of my time, I really don't have much time to sit and contemplate on how I feel. I haven't dug a hole and buried myself, and I am still learning what I "should and shouldn't do". The hardest thing has been learning to say "NO" to family. It doesn't bother me so much to say it to friends -- they either understand or they don't.
The one thing I would most like to express is that my husband, Eddie and our son, Shane are the most important parts of my life. They are my daily inspiration and my reasons to get out of bed and move on.
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