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About Colleen

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  1. I could really use some advice on how to cope with ischemic fingertips. It's so painful. Dr. prescribed a painreliever but it didn't touch it only made me sick. Any advice? Thanks, Colleen
  2. HELP! I read this blog all the time to get helpful tips and knowledge about our disease. Here's my twist. I've been on line a bit can't find any info. I have CREST with pulmonary fibrosis, PAH, and a pacemaker. In Dec. I was diagnosed with stage 1-2 Hodgkins Lymphoma. I had been on cellcept since the previous Aug. I started chemo mid january. I saw my schlero doctor. yesterday. She said I have aseptic fingers, probably caused from the steroids you get right before the protocol. She's doubling my revatio. She said it's like a pre-gangreen. This is scaring me. Any ideas, info?? Thanks. Colleen
  3. Hi peanut Where did you get your pulse gizmo? I find the 02 a guessing game depending on what I'm doing. I usually can tell my breath but know this would be a better measurement of 02 diffusion. Thanks for the info Colleen
  4. Barbara When you said you have to be diabled for 6 months, what does that mean? That you haven't been able to go to work for six months? Or your doctors say you are disabled? I am getting ready to submit for disability. I've followed the postings on this subject. I'm going to start on my own first without a lawyer. It sounds like the outcome of getting disability has a lot to do with luck from the beginning of that first interview. Namaste Colleen
  5. Hi Jen My oral surgery is on Monday...yuck. I'm also on Cellcept and will start the antibiotics Monday as well. Here's a tip that might help fight infection. Take a cap full of perioxide....dilute if to much for you. Swish around in your mouth, try to hold it for up to 10 minutes than spit it out. Once daily. And extra benefit-it'll also brighten those pearly whites. Good Luck Colleen
  6. I went to a workshop on "Qualifying for Disability Benefits". A couple of pre-application tips the attorney gave: (1) Be very specific with your doctor regarding your condition....don't report "I'm tired" rather "I was dozing off at my desk". Keep accurate records between your doctor appointments so that he/she can be specific when filling out their forms. (2) Describe your absolute worst day when filling out the "Daily Activities Questionaire" section of the application (3) Don't rely on the SS agency to answer question, they are overworked and understaffed and the new employees they do have are inexperienced. (4) Use an attorney to wade through the process including obtaining records and aiding in filling out assessment forms. (5) Contact the National Organization of Social Security Claimants Representatives (NOSSCR) or 1-800-431-2804. As you said the process is long and aggravating, the experts can take the burden off your plate as they know the ropes. I hope this is helpful. Good Luck Colleen
  7. I've only just started cellcept @1000mg. After this month my doctor will increase the dosage. Sorry I can't add any insight to your question but I'm interested in hearing responses. Wishing Good Health to All, Colleen
  8. Colleen


    Janey The site on interpreting PFT's and the idea of creating a chart is great. This will give me a better picture of my status. Thanks. Colleen
  9. Believe it or not Alex, I will be in Philadelphia this weekend. PM me if you want to get in touch. If not, I hope you will have some fun in the City of Brotherly Love. Last time I flew, I had oxygen on board and it made all the difference. You might check into it. Have a GREAT vacation. Colleen
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