truman

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Everything posted by truman

  1. Hi Lisa: I guess that means for those of us who got retro reimbursement when approved (mine was supposed to start in April 08), then two years from April?
  2. Yes, Miralex, I agreed and take it from one who knows what you're going through,
  3. Razz: Sandwiched is the right analogy. I so wanted more for my sons then I had gotten, that's where the mistake began. We strive, struggle and fight without asking why. That's from wanting for not being given everything. Okay, our kids won't have to suffer that, so we give all. Mistake; now they don't know what is to work for, earn and learn respect. What is the happy medium? I don't know. Just didn't want my kids to go through all the hard times like me...mistake..... '
  4. Hi Suzie: Try the chat room on Wednesday if you're able. I tend to get into Wednesday's. For some reason Sundays just don't connect with me. Linda
  5. Good question Peggy, but I understood that is was from 2 years of disability. In other words, last day of work was Oct. 07. Permanent disability was granted 6/08. It was my understanding it would go back to Oct. 07 as starting period. Can anyone provide information?
  6. Peanut/Sara: I'm trying to find words to express all that Peanut has gone through and all she has to go through in the near future. I can't find the appropriate ones. To risk all, to fight as hard as you are, is proof we need to be the advocate in our health. You'll triumph Peanut, because you believe, you strive and you fight. My thoughts are so with you. You are a hero in the attempt to stem this ugly disease. You took the chance, and you will succeed.
  7. It is with great difficulty to draw blood from me as well. Is this typical of CREST/Sclero patients?
  8. It was the stress. I was divorced raising the two boys alone. I too, had just purchased a home. My mother with whom I had had a turbulent relationship at best, had just past away. My ex husband had literally walked out of the boys lives yet, continually harassed me. The stress was unbelievable We had our own business and after divorce I had to look for work if I was to raise the boys on my own. I took a secretarial job close to home and on the first day I felt my heart being torn out of my chest in having to be away from the boys as they waited in "after care". I had a very controlling woman boss who told me I must do the best I can and added "who else is going to hire a woman with two children". Razz it's funny you mention the paint and carpet fumes. I refinished furniture and antiques as a hobby and constantly had my hands in chemicals and paint strippers, not to mention the fumes. All in all, I think the predisposition was laid years ago at the shore. The mosquito spraying truck came every night, and as stupid as it seems now, our parents used to tell us to get in the fog/mist so we would be protected from bites for the evening. :(
  9. Jefa: Never had a glucose test. general practitioner always runs the general tests. Diabetes ran to a niece on my fathers side and elderly diabetes on my grandfather's side.
  10. Does anyone else with Sclero or CREST find that the medical field automatically assumes you have diabetes? I have been told it was on my chart twice. The doctors in my inner circle (4) constantly ask me as well which somewhat in a :blink: way makes me wonder; they run the tests. I'm constantly having to tell them no. It must be easier in sending in insurance claims, or maybe they just assume from losing the toe. We all know what happens when one assumes :o ; could mistakenly be put on insulin in an emergency.
  11. Hi Christy: You could just call the service and have the doctor paged. One phone call and he could tell you what to do. If your dosage was taken down for medical reasons, I wouldn't mess with it, but if just as a weaning to lose taking the drug altogether out of a daily nuisance, I would continue with the original dosage until I spoke to the doctor. I find I generally get into trouble when playing doctor at home <_< . Give the doctor a call and let us know what happens. Feel Better, Linda
  12. Since my sons left home, I find I now tend to treat myself in the food department. I generally eat very little if at all but definitely enjoy good food. I am, I'm told, a fantastic cook in that I over spice in the love department and throughly enjoy cooking as a hobby and for taste. At all block parties and events, my neighbor and best friend Norma are the first tables everyone comes to. Norma, what a cook, her eggplant parm to die for. She always cuts a large wedge for Dane and hides it in the refrigerator so guests don't get at it. I'm known for my homemade piergoies and now empanadas. I'm told piergoies like little pillows, you can see through the dough. I actually sold them when first divorced. Boys and I would be up late at night making pierogies and finally had to give it up; couldn't meet the demand to supply ratio but kept our heads above water at the time. I tend to forget to eat unless prompted and depression is a sure no eater. After every wound care appointment, I visit a high class wine/cheese chain close to the hospital. I cruise the gourmet cheeses and choose several to take home as a treat. I also occasionally treat myself to a high end steak or pre packaged meal. I could never even contemplate that with the boys home! I used to cruise the meat department at the A&P and the meat was generally marked down which allowed the boys to eat at their heart's content. I find I also go to the little out of the way Italian delis and get their homemade chicken parm. What I also do now is call the local pizzeria and order baked ziti or chicken parm but I tell them just prepare, DON'T cook it. That way I'm in no hurry to eat it down on arrival. I just heat my convection oven and cook and it's like it just got here and if I find I don't want to eat it that night, I freeze and it's ready to go when I am. What have all my friends here done to treat themselves?
  13. Sweet/Nan: Just got a check from "SDC" for a great deal of money, but no explanation. Does that mean I got the permanent disability? Linda
  14. Ended my Prednisone Sunday and right on course got gradually sick. Monday was eh, Tuesday could begin to feel my skin crawl and tighten and was in and out of it. Went to bed 7 on Tuesday and could feel myself getting really sick. Got up and looked in the bathroom mirror and my entire body was lobster red and painful. Was thinking about calling my neighbor to take me to ER but decided to sweat it out until morning. This morning I was still debating on ER but didn't want to be admitted nor did I want to be back on the Prednisone. The touch of clothing on my skin was excruciating. Couldn't stand the pain any more and feeling extremely light headed, I called the rheumatologist, who I should have probably had address this from the get go. I explained I was heading to ER unless he wanted me there; she said come right over. Call my neighbor and off we went. I was a complete mess; totally red and blistering, light headed, trembling and out of it. He feels I just CANNOT be off the Prednisone at this time or in the near future. I'll be doing 30 mg for 2 days, 25 for 2 days and 20 mg per day thereafter, and included another antihistamine and potassium pills (I think that's where the light head came from lack of). Came home and took the new meds. The trembling seems to have stopped but I still have a chill. I'm thinking of taking a nap and hoping for a big improvement upon wakening. Prednisone may be a very serious and dangerous drug, but weighing the differences, I just can keep running to ERs and doctors and decided the pros outweighed the cons.
  15. Amen Razz.
  16. Razz: It's apparent you do not have low self esteem. No body and nothing was gonna take your body, spirit and soul away. I feel the same and am fighting as I would fight for my kids, rights and faith. You are an inspiration. Writing your book will spread the word to all those who don't know. I'm rooting for you Razz. Get out there and let them know and if you need back up, we're right by your side friend.
  17. You know Razz, it's funny how kids grow up to mimic the things you do without really knowing why. My "boys" are now 27 and 31. They automatically don't drink and drive, automatically use seat belts, the younger one still taps his toothbrush on the sink before putting it away, and they say "see you later" whenever anyone leaves the house, NEVER goodbye. All the things I did from youth. I remember Dane having "words" with his then girlfriend and I asked what the argument was about. He said she had the nerve to say goodbye to you when she was leaving :angry: ! I remember as a younger woman going through divorce, I went to a psychologist to get through it. We got on the subject of my father who had passed when I was 15 and was questioning if I had really ever loved him :huh: . The doctor pointed out that I did and still do many of the things my father did; the doctor then said that we emulate the ones we admire and respect. Nice feeling :) .
  18. smurfette: Why drive yourself crazy? I don't stand on principal anymore; never really did. Get yourself some nice dressy shorts and a tank top and everybody in the pool :) ! My entire adult life I abhorred swimsuits and did just that and believe me no one batted an eye. It's your vacation and enjoy however it makes you happy .
  19. Razz: If you have the opportunity, try to join us in the chat room on Wednesdays and Sundays. Talk about getting to know each other; we talk so much and so fast, it's amazing how fast that hour goes by. It's like we're old friends.
  20. Celia: It's literally been like night and day since yesterday. Was so very sick yesterday and today after taking the Prednisone, I "normal" again. What a feeling. I do hope to eventually come off it, but what a relief. I was up until 3 am last night because it was so painful to lay on the rash which covered my entire torso, back, thighs and upper arms yet I woke up to my "normal" skin this morning and all pain is gone. I'm not sure if it was the Prednisone or Potassium which actually started working late yesterday when I was able to gather my thoughts again.
  21. Houses are all ranch one floor styles. Typical day would be nice and balmy. Day begins with sweeping off all the outside ramps because all those stairs are gone. All appliances would be push button so housekeeping would be a breeze. Get the laundry out of the because the wash/dry is on the same floor. Outside landscaping would be impeccable because those that can do and those that can't hire. Neighbors would be the best because no one is different. I picture lots of pot luck dinners, card games, block parties and tons of get togethers just to celebrate. All stores would have drive up windows for pick up and drop off. All physicians would have offices on Main Street and be totally knowledgeable in all phases of this disease. Certainly wouldn't be a "down"town.....
  22. Doesn't matter Sweet; You still look like a model ! :)
  23. Lucy: So true about the pets. I'm grateful that I could be home 24/7 with my Truman before his death in February. He gave me so much love, joy, comfort and laughter. My new one Oliver, is a handful. He's a year and half old but is already learning he needs to tread slowly if mommy is up and walking. His previous owner must have sent him to "school" as he knows all the commands. He needs to understand the difference between outside and inside. He'll see a squirrel outside and thinks that magically if he jumps off the couch and races into the kitchen, he'll "get him". Only thing he's gotten so far is a bump on the head from sliding across the kitchen floor and into the wall. Suzie girl, sounds like your finally pain free. Sending my love to you each and every day. I know KarenLee, you and I became buddies so quickly and I'm all the more benefiting from our friendship. Linda
  24. Great description Nina; it is the port in the storm, the place where you can feel comfortable and safe, if only for a moment.
  25. Nina: 17 years ago when I was first "diagnosed", I fell to pieces. My son Ryan was 14 at the time. I clearly remember him saying to me "why are you crying, so afraid?". He then said "it is what it is; just because they put a "name" to the illness doesn't make it any different, "it is what it is". I've lived by that every day thereafter and became less and less afraid to hear the bad things because....