Its just lousy how people can be. If you had a broken leg you got doing something incredibly stupid, like diving off a roof on a dirt bike, then people would be so sympathetic and smile. But if you are young and sick, people get scared and condemn what they fear, treating the sick person like they deserve it. Even children. And the more scared they are, the more they fear and the worse they are. Actually, it kind of tells you who is naughty and who is nice, for those so afraid of our illness and make all kinds of assumptions are those who perhaps feel they do deserve to be sick, because of risky or simply rotten behavior.
Its a good hearted, kind person who is troubled and unprepared for this kind of treatment. I got a lot of overt crap when I was being treated for Hepatitis C--especially from the medical community, who should know better. I was a pariah, and made to feel horrible, denied pain meds because everyone with Hep C is a junkie, and humiliated alot. Some medical professionals did not want to take my blood or examine me.
Here in rural ga you have the added element of "if you went to the right church and got right with God, he would heal you" or "you wouldn't have gotten sick". Yet everytime I set foot in these churches just to visit I get sicker with something new.
Its easy to criticize another when you don't go to a doctor and have no clue whats going on, like the people here. Most of them are probably sick too, they don't want to know.
Barb, you don't deserve this crap, this illness and this treatment by others, no one does. I'm sure Nikita and Bill are grateful beyond belief for every day they have with you. You have done absolutely everything you can to be there for your family in the midst of unbelievably massive obstacles. You have and continue to fight bravely. I don't know that its possible for any of us to truly fully accept our illness all the time, and be perfect to others while we are struggling just to get along. I remember that movie where it said "Sometime being a b**** is all we have left." I thinkit was Delores Claiborne. But its true sometimes, and if people provoke me when I'm ill, they are likely to get a dose of it at them and, secretly, its probably this punishment they crave.
Know I'm always praying for you and hoping that phone will ring soon and life wll get ALOT better for you. Love to you always, and if I was there I'd give 'em what fer.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids