The title says it all and it is the story of my existence. I was about 33 when my Lymphedema symptoms began, problem was no doctor I went to knew what it was. No one could figure out why my right leg stayed puffed up or why I retained fluid the way I did. Heart? Nope. Diabetes? Nope. X.Y.Z., 1.2.3?? NADA. Finally after about 2 years and two hospitalizations someone figured it out. Then I spent another two years trying to find someone who could help me. I finally realized that I was my best advocate and healer so I hit the internet for answers. I learned more in 6 months than any Doctor could tell me. I am not saying you should not see doctors, I have a wonderful one now I would not trade for the world but I do believe we have to take our lives and health into our own hands and used good judgement. We have to push our way through the red tape and the lack of care that can sometimes be presented in the form of cut backs, non availability or just plain ignorance or lack of care.
After my husband died, I was left with no insurance and I was in the situation of not having enough money to get good medical care but not being poor enough to get Medicaid/free care. I struggled with my medical conditions, new problems presented themselves And my condition worsened to the point I became disabled. I applied for disability but because My husband and I made the decision to home school our kids I stayed at home most of their childhood and did not work the preceding 10 years from the time of my illness so therefore, I did not accumulate enough "work credits" in that 10 years to get disability. Never mind the years I worked before I was a mother and let's not count the years I worked to save up for the house I currently live in. I can collect a portion of my husband's SS when I am 70, how nice of those *&%$#@
Anyway, I deal with pain, depression, aggravation, stupidity, red tape, indifference and just plain "I don't give a shit" attitudes all of the time. I do not ask for pity, only understanding. I don't want a hand out, I want a hand up and I want my tax money I invested in the SS system when I was young, healthy and working! I want more programs to help people who want to help themselves. I want less spoon feeding and more opportunities to get up on your own two feet and thrive without welfare or any government involvement . Most of all, I want The Health Care System, The Government and Society in general to realize and truly UNDERSTAND that having Lymphedema is life changing and painful, and debilitating and agonizing. The care we have to have, the things we go through daily just to be able to walk around without collapsing is exhausting. I cannot enjoy a movie with my kids, I can't sit long enough to watch a movie. We do movies at home where I can lay on the bed or sofa. I can't go to family parties and outings unless I have access to a place where I can lay down or at least prop my legs up. I cannot walk long distances so there goes anything fun like hiking, flea markets, the beach, public festivals and celebrations. I could not even enjoy the Fourth of July fireworks downtown with my mom and kids, I couldn't endure the walking or the sitting.
No one understands the loneliness, the isolation, the feeling of doom and gloom. The feelings that life is passing me by. I can not do any of the things I once enjoyed. I loved live music shows and dancing.... OH I loved to dance! Those days are over for me. I can't walk most days without stumbling and I fall several times a year. This past week alone I fell twice, one time was really hard, full body weight on the concrete side walk, right on my right side which is the worse side. I can't even garden or work in my yard like I once did. I can't walk the dog, I can't run and play with my little niece. Little things most people take for granted every day I can't do. Oh I try... believe me I do. I either end up hurting myself or I end up in bed for two or three days in agony. The worse part and the part I try to ignore is the judgement of others. I hear the whispers and I hear the grapevine rumors. Instead of compassion and understanding, instead of offering to help around my house or take me out to do something I CAN enjoy I get indifference or unkind remarks or just flat out ignored.
I kept my latest diagnosis to myself, I knew it would draw negative comments but I finally told a family member who blabbed to everyone and next thing I know I hear that I am CRAZY. I called the family member and two other people that I knew would run straight to the grapevine and informed them that My Shrink says I am NOT crazy, life has just kicked my butt one two many times and I am a strong, intelligent articulate lady who happens to have a near non existing support system and way too much BS for one person to have to deal with alone. I have Post Traumatic Stress Disorder folks.... I am not crazy, just filled to the top with stress and anxiety and I am BS intolerant. My medical doctor advised me to get some new friends, find some new hobbies I could do and leave all the drama filled family stuff FAR behind. So, that is what I have been doing. I have become selfish. I have become self-serving and I have become self-centered. I should have done it years ago....
So today is pain filled and I have sat at the computer typing this far longer than I should have. I have to go now and lay down for at least an hour then go do a sink of dishes and lay down for another hour. This is my existence. Pain, Aggravation, Doctors, Medications, Special diet, Special Exercise, Special Accommodations and Needs, Depression, Anxiety, Worry, Boredom, Grief and an entire plethora of other issues that have made my time here in this world a mere existence, no longer a real LIFE.
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