Lately I havent felt up to par, healthwise. Later this morning I have a drs appt to discuss what is going on. If I havent mentioned it, I am sick. No, I have been blessed to not have cancer, or anything else like that.....however my dr keeps trying to get it in my head How sick I am. I have a chronic, no cure autoimmune disorder, Lupus. That will not go into a "resting" phase (remission). It appears to be constantly getting worse. When I was diagnosed three years ago, I was just relieved to know what was wrong with me. The aching, and fevers, and constant fatigue was horrible. But here I sit 3 years later, many specialists, alittle heavier, and handful of pills later, and nothing has changed. I will be honest. Its depressing.
And to be honest, I dont know what is more depressing.....being sick. or having others doubt me that I am. I get told ALL the time, even by my dr, that I dont look or act sick. If you walked by and saw me, youd never know how i was feeling. You wouldnt know my arms hurt extremely, they feel like 1000 lbs each. My legs are always swollen, and I have a terrible headache Everyday. I have actually had a dr tell me, it was all in my head because I looked fine. I have had so called friends tell me that too. That hurts more than how I feel. For those of you that dont know much about lupus, let me educate you briefly....
Systemic lupus erythematosus often abbreviated to SLE or lupus, is a systemic autoimmune disease (or autoimmune connective tissue disease) that can affect any part of the body. As occurs in other autoimmune diseases, the immune system attacks the body's cells and tissue, resulting in inflammation and tissue damage.[1] It is a Type III hypersensitivity reaction caused by antibody-immune complex formation.
SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness (called flares) alternating with remissions. The disease occurs nine times more often in women than in men, especially in women in child-bearing years ages 15 to 35, and is also more common in those of non-European descent.[2][3][4]
SLE is treatable using immunosuppression, mainly with cyclophosphamide, corticosteroids and other immunosuppressants; there is currently no cure. SLE can be fatal, although with recent medical advances, fatalities are becoming increasingly rare.
SLE is one of several diseases known as "the great imitators" because it often mimics or is mistaken for other illnesses.[6] SLE is a classical item in differential diagnosis,[2] because SLE symptoms vary widely and come and go unpredictably. Diagnosis can thus be elusive, with some people suffering unexplained symptoms of untreated SLE for years. (from wikipedia).
Now please donot misunderstand me. I am not writing (venting) on this today seeking sympathy. But perhaps trying to help you understand what my life is like. What life is like for my boys and husband. Yes I may not appear sick. I may seem fine, and laugh, and continue living like things are hunky dorie. About 90% of the time, I regret not "saying no" to things, over doing activites. I work very very part time. Like two hours a day. Some days thats 2 hours too many for me. I am currently working on a plan that would allow me to own my own business. Set my own hours according to how I am feeling. Most employers frown upon you needing to take days off for rest. LOL.
I am hoping with todays Dr visit, that a "game" plan can be set up. I am tired of taking 20+pills aweek. I am tired of feeling icky. I am tired of not sleeping because of "restless arm syndrome", I am tired of leg cramps, and feeling like I have pnemonia when I breathe. Praying today will be a great day.
I love reading my Bible when I feel like this. I can usually find something to make me feel comforted, when no one else seems to know what to say. God ALWAYS knows what to say :)
"And be not grieved and depressed, for the joy of the Lord is your strength and stronghold." neh.8:10
"God is our refuge and strength, and very present help in time of need." Psalm 46:1
As today begins, look to Him for your strength and comfort. He is the only one who can truly give you peace. I have a faith that God will allow me to use my being sick for the good. To encourage others around me. And help those who may feel the way I do.
Sorry today wasnt a perky cheerful post, but I feel better.....Have an amazing mid August week, look to the future, I believe a cool down is coming. Soon!
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