I am trying to come to terms with life...it's many facets...

As my body continues it's insidious assault on itself from my immune system disease, I watch in horror as the betrayal of my own shell converges upon me. I look so much different...my shape has changed...certainly these are a result of getting older, yet there are other changes that I experience and wonder if they appear only to me or if other's see them too. I'm tired, so very weary all the time...too tired to keep my blog up to date, to talk on the phone sometimes, to get anything done in my crib...I allow relationships to lapse, I feel I have nothing much to offer...I have no outside life and although I read voraciously and I am fairly intelligent, I still see the stigma that society brands us with...those of us considered to be disabled. I have heard people call someone an "invalid" and that word really rankles...I hate the connotation of "IN VALID" As in NOT valid....I am much more aware of how people are treated, especially those who are unable to function the same as mainstream society. Like, for instance, a few years ago, at Walmart, as a woman was wheeled into the store in her wheelchair, I noticed people talking over her head as though she were not there or was deaf and blind! My Grandmum was dining out with my Aunt one time and Gramma was in a wheelchair and the waitress asked my AUNT if my Grandma would like some coffee and my Aunt said "I really don't know...why don't you ASK HER she's not deaf!!!" I loved it that she spoke up like that! I'm not in a wheelchair and to look at me I don't appear to be disabled, although upon closer inspection one would notice that I am blind as a bat and must hold anything I'm inspecting right up to my face...I have an unusual gait now that I never had before and I sweat profusely from my immune system...I feel weak and achy, I get the chills a lot and my temperature gauge is wack! I have a curvature in my spine and my hair is falling out. I really loathe how my body has betrayed me. At one time, I was curvy and into the latest fashions...I would never leave the house without makeup on & hair styled and I was always active...out dancing, singing in a club, busy at my job and excited about the future. I knew I had something wrong with my immune system but I lived around it as best I could and being young I was able to bounce back much more quickly. I was always in pain and felt rotten a lot but that was actually normal to me because I'd been like that since birth. When I was in my 20's they finally had a name for it and realized it was also behind my other health woes, which were an eye disease and thyroid disorder. The older I got the more health problems popped up ... until one day I began feeling very very strange and ill, so weak and dizzy....I went all over to specialists to no avail...Then began the powerful nosebleeds, the gasping for oxygen, the inability to eat, the vomiting of blood and stomach acid...and no more bowel movements...I had become bedridden and powerless to fight it...my will was gone and I laid in my bed, in my dark room, semi awake for weeks waiting for death. Unbeknownst to me my skin had turned a sickly yellow, I had lost over 40 pounds and my hair had turned white (what there was left of it) ...One night I felt sure death was imminent and God guided my Mom to come over and she took a look at me (she had begged me to go to the doctor for weeks but I refused thinking they couldn't help me) and she said "You ARE going to the hospital NOW!" and she and my boyfriend bundled me up and helped me maneuver my way into the car and sped me off to the hospital. Once there, all hell broke loose! I was connected to oxygen, I.V.'s, blood was drawn, x-rays taken, arterial gasses, immune tests, and so on....then I was trundled off to the I.C.U. in an isolation section....to wait...Next came doctors to consult with me and I was horrified to learn they wanted me to have a bone marrow test, whereby bone marrow is extracted from the hip and tested because they feared I had leukemia...(which is what my Mom and I had also feared) After much deliberation, I decided against the bone marrow test and pleaded to wait until some of the other test results came back...The doctors agreed to allow me a short reprieve and so we continued to wait....several hours later, it appeared I had one very messed up immunesystem and my hemoglobin was less than 4!!! I should have been d.o.a. or at very least comatose! Further results showed my red blood cells were huge and very small in number and I was in liver failure! (hence the jaundice!) My spleen was enlarged and munching down on my blood cells and I had hemolytic anemia AND PERNICIOUS ANEMIA!!! Pernicious anemia was behind this!!! People like myself who suffer from IgA deficiency, one of the components of the immune system, better known as Immunoglobulin Antibody, will manifest other illness as a result. Many people are of the mistaken notion that pernicious anemia is a blood disorder, but it is NOT! It is, in fact, a disorder whereby all of one's INTRINSIC FACTOR in the gut is GONE or DESTROYED due to a number of factors, one of which can be an AUTO-IMMUNE DISEASE which is a disease whereby one's own body attacks itself! I have auto immune disease and it attacked my intrinsic factor in the gut and intrinsic factor is absolutely necessary to break down and assimilate vitamin B-12, without which, one will die. I had NO intrinsic factor, my immune system disease having destroyed it, hence the lack of B-12 and all the resultant hell! I will never get my intrinsic factor back, (the gut's enzyme necessary to absorption of B-12) however, with monthly injections of B-12, that BYPASS the gut, I can LIVE with this disease! Thank God we are in an age of high tech medicine, for had I lived in the 50's or before, no cure was available! Some people could squeeze a few years out of eating RAW liver every single day but that was the only known treatment for the disease! There are many other health problems as a result of this missing intrinsic factor, namely in the gut and bowels...I am deficient in many other nutrients, I was in a state of starvation when I arrived at the hospital and the first drug they hit me with was huge doses of solumedrol, which is a corticosteroid. It was to further weaken my immune system to get it to STOP attacking me but in the process also severely jeopardizing me, in that I could develop a secondary infection and be unable to fight it! It was touch and go for the first week with many events too numerous to mention....The solumedrol caused sleeplessness, so I was fried and hyper at the same time, I was on constant oxygen, was too weak to get up except to pee and then they were in my room every hour to draw blood and my arms turned black from the elbows down and my veins were collapsing so they installed a shunt to get ez access to one remaing good one! They injected me with ever increasing doses of B-12 and other vitamins and measured my every pit stop! I was studied by a group of student docs & nurses and I felt kinda like a side-show freak but really I didn't mind! Lol! I'm down in the books since they'd never seen anyone with that low a hemoglobin count alive before! For 2 years following my 2 weeks in hospital I struggled with regaining my strength...my legs were weak and would give out on me unexpectedly...I had chronic diarrhea...my right hand had some nerve damage...my stomach had atrophied and I could never again enjoy food like I had since it either went right through me or hurt my stomach, or puffed my gut up so much I couldn't breathe. I then became constipated and that alternated with the diarrhea. I never have a day my gut doesn't hurt. My teeth began to crack and chunks came out and they broke off at the gumline as abcesses began to plague me, since all the enamel had been eroded from the months of puking pure stomach acid. I developed hives...terrible hives that caused me to stay in my house for 2 years without leaving...it has been 6 years and they are finally abating. During that time, my body attacked my ovaries and I started the onset of premature menopause! 6 years of hell, during which I rarely left my house, had 60 or more hellacious hotflashes a day and all the other miserable symptoms of meno, magnified by my immune system and the hives! The worst, most terrifying aspect was the unpredictability of the allergic responses and many times feared I'd die when the hives would be inside my mouth and block my throat, my uvula would swell and I'd be unable to swallow, barely able to breathe! I can tell you that God was never far from my thoughts or my life...I don't know how many times I prayed fervently for God to spare me and heal me, to pull me through so I could breathe and wouldn't die, but it was daily and for years. I became allergic to more & more things....I became less active in my home, more depressed, more health issues ensued, arthritis, my eye disease, peripheral uveitis, caused secondary cataracts,which now need surgery but my body would reject the lens implants so my eye doc has found a specialist who may have some that would work, but it is a real risk... osteoporosis, fibromyalgis, more stuff too numerous to mention....more hopeless feeling and wondered and still wonder WHY why must we suffer and become ill? I know that God was with me,IS with me, I know He pulled me through, I KNOW it could have been so much worse...yet, I have no life and my hopes and dreams seem too far away to touch any longer.

At one time, I still believed in dreams...still felt that they were reachable, attainable....someday.... I'd keep telling myself. Years have passed....I am still here, yet no longer believing in dreams. The things I'd hoped to achieve can never be.

Acceptance

is a terrible burden to bear as I yearn for what could have been ...knowing what will never be.

I try to compromise in my hopes and dreams and even they, in compromise, are watered down and lack substance. I have always been the type of person to do things wholeheartedly and with fervor and anything less seems pathetic and insubstantial to me. I feel no satisfaction in my life and I have little reason to face any day with hope or tidings of joy...there is only another gray day, looming before me with time to fill.

I should be glad to be alive, having struggled back from death's door, yet in the aftermath, as day to day life kicks in....there seems only a long, dreary road ahead, with endless twists and turns and all the signs posted in some cryptic language.