truman

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Everything posted by truman

  1. Just be aware that burning, itching palms of the hands is also a signal to an allergic reaction to medication whether it be an antibiotic or some other med. Even if you've never be allgeric before, it becomes sudden if continued. This happened to me with tetracycline and omnisef; both drugs which I tolerated well before.
  2. Had my annual review today. My "superior" had taken the opportunity to inform me that although I'm salaried, that does not necessarily mean an eight hour day and perhaps I should plan to stay longer to show initiative. Little does he know the constant pain in my foot for the past three months that warrants me to scream in my house with windows closed, the limited use of my arm and the constant freezing AC blowing from when I get there at 7am till I leave purple at 4pm. I feel it's my right not to advertise my medical condition, but have chosen to let HR in on my circumstances in case of emergency. Extending my day? I'm lucky to get myself up each day at 4:30-5:00am, get myself in there and work to the best of my ability to complete an 8 hour (9 when you can't leave at lunch) and go home to scream from the extreme pain each day from the ulcers on my big toe. I have the one on my finger somewhat under control, but I guess due to the area and the body weight projected on the area, the toe is taking so long to go. I've told my rheumatologist twice and my Internist of this as well. People at work are beginning to notice my limping and make shift bandages and asking if I'm alright. I dread the fall, as now I'm passing with open sandals. I dread having to put my feet in closed shoes and the pain it will produce. I get so exhausted yet when I lay down at night the pain worsens from not being upright. With the volume of posters on this site alone, I'm amazed that there is not much known or recognized in the medical field for this disease! I've learned on the government website that disability for this condition requires two (maybe more?) deficiencies to become eligible, if at all. I've attempted to get in bed three times this evening, but had to get up to walk the pain off. It's going to be another 2:30 night like last night. Sorry, just had to vent a little. Just wish this pain would go away.
  3. Hi Kamlesh: Been thinking about you as I've not been able to communicate with you in some time. When we hit the lows, we really hit the lows; but I'm finding with each low, I'm feeling the whack a little less and beginning to just live my life. Please contact me Kamlesh if you wish, as you have always been there in the beginning for me!
  4. All posters to my messages have been wonderful, uplifting and a family. I need this time off to get my body into temp and my mind into gear. Thanks so much my friends/family............
  5. Sweet: Just today, HR called and said the same thing. She's filling out the paperwork and sending if off tomorrow via messenger. She said although it's slated for a week, she would feel better if I filled out the paperwork "just in case". Thanks Sweet.........
  6. The pain was so great today that I called the rheumatologist who said I needed to go to my general practitioner. He said I need to see a Vasco Surgeon immediately and the toe was in extremely bad shape. He feels I have a blockage somewhere. He has put me out of work until the 17th. He also said he called the rheumatologist and told her he felt she was not addressing the situation aggressively enough. She presently has me on no medication other than gout medication, vitamin D and Baby Aspirin. She told him my symptoms did not warrant additional meds at tis point, but I'm glad my general practitioner is looking out for me and will discuss this with my rheumatologist. My general practitioner prescribed two antibiotics and the "notice" that as of today, it's not an "option", I cannot smoke any longer. Tomorrow, my new agenda is in force. I just hope the doctor's meds of antibiotic therapy kick in this weekend, because I'm, physically drained. Will also keep doctor's appointment on Tues. with the general practitioner and Vasco; echo on Wednesdy; I can shop, but not necessarily buy.
  7. Same with classmates in my hometown. One with Scerlmo and myself with Crest. Two with Lou Gherigs, one with MS across the street. We had and still remaining bldgs. of an animal lab which no one will tear down. The ball field where the kids played baseball up until 5 years ago has been condemned by the DEP. We are a town of one mile square! Additionally, I remember as a kid down the shore, when the mosquito repellent sprayer came around each evening at 7, we were encouraged by our parents to "get in the spray" so we would be "protected" for the evening........how STUPID......but they didn't know, the sprayer didn't know (he even gave you an extra blast to keep you covered). I wonder..........doesn't seem a mystery to me. I feel autoimmune diseases are produced by the environment affecting some as cancer affects others. I believe stress plays a huge part in all of it, as my life being a single parent for the last 25 years, supporting my family, college tuition so they could have better than me and the final desertion of my sons has been a stress level of the ultimate. I have; believe this or not, found that the rationalization of this diagnosis less stressful that the last 25 years. I believe that the huge stress load had let my guard down. I also have, after 16 years, accepted this diagnosis and will not waste any more "woe is me" time. I love life, still have my sense of humor and will not to let this get the best of me.
  8. Is it a coconut butter content?
  9. Hi James: My sons bailed on me; family is non exsistent whether thru denial or the desire not to get involved. Don't you bail, don't you give in, or give up. Best site you could be on. I just spent about 20 minutes crying, and it's gone from several days to several hours and now down to several minutes. ;) Just fight. The mind is a wonderful thing. The exercises you are attempting to do are not as important as the excersises the mind needs to do. Friends have proven to be the "family" that has deserted me. I am extremely fortunate in that this disease has only infected a portion of my exterior body, but I am mentally preparing myself for any future attacks on other areas. Met a great person last night and we hit it off. Began wondering if it would be worth pursuing in light of the situation. Result: Not sure yet, but growing mentally stronger every day.
  10. Returned from my internist visit on Tuesday. He question why my rheumatologist has not prescribed anything for my Lupus. My internist at our last visit said the lab forgot to treat me for Lupus, but all signs point to negative. Who is not reading the blood results correctly? I tend to believe the rheumatologist, in that it is their speciality.
  11. That's my point. She said the clinic neglected to test me for Lupus, and that she was sure that was not a consideration based on my symptoms and other blood tests conducted. The internist gathered from the blood tests done, that is was Lupus. I told him to call the rheumatologist and discuss their theories before discussing one on one with me. Again, I tend to trust the rheumatologist's diagnosis more, not because it's one less worry, but it's her field and expertise.
  12. My internist advises me to continue to take an additional water pill along with my Norvasc which contains a diuretic as well. It works well with no side effects, but you may want to check with your doctors first.
  13. Jen: My family (sons) deserted me shortly before my diagnosis. I believe fear played a large part. I received an email from a very dear friend today. I can't share it all, but these lines hit home: You are a very sensitive person and although the recent confirmation of this disease is frightening to you, it seems to me that you are more devastated by the disappearance of your children in your life. I have always placed more emphasis on the mind and spirit and not the body. You must be content and happy with who you are and what you have become. There are more cases of people who are physically sound but are unhappy and destroy themselves mentally. That is by far worse. You have been a source of inspiration to me as well as others. You joke and have a wonderful sense of humor. You are a decent, sensitive, loving, warm and caring person. I have found my friends to be a tremendous source of strength and power in dealing with whatever comes along. You have friends here as well, and with the knowledge and experience of what is occurring in your life.
  14. I recently developed ulcers on one finger and one big toe due to the Raynauds. I have dealt with these in the past, but the toe has me concerned in that it's been at least two months since developing and still quite painful. Doctor advises me to use Bacitracin. The finger has healed with a permanent numbness. With Fall approaching, I'll never be able to wear a shoe without extreme pain. I have begun soaking twice a day in warm salt water and dressing with Bacitracin. Any other suggestions are welcome......please!
  15. Hi James: Lost my family in the diagnosis too. I found a lot of help through my psychologist and very close friends. I have also learned from this website, that there is a light at the end of the tunnel. Stress is a non productive condition in anyone's life, and the release of it can work wonders be it in exercise, psychologist sessions, etc. I think the greatest hurdle to overcome, is the fear and in our cases, going it alone without family. What is, is.........once the shock wears off, the gloves come on! One day at a time with an attitude of living life to the fullest. You'll do fine my friend..........such a good group here.........very caring friends!
  16. Tammy: I started with raynauds on my younger son's 10th birthday. Was tested for everything with no connection. A young doctor diagnosed me with scleroderma and I could find very little info on the internet except for bits and pieces of what appeared to be a rather dismal future. I ran from that diagnosis for 16 years as the raynauds progressed from my feet to my hands; generally out of control. Different symptoms of scleroderma appeared, separately and apart from any true diagnosis and I never confided in my doctor of the past diagnosis out of fear of reality. Even to this day, when an ortho doctor diagnosed me with CREST, I ran until I found a doctor who did not diagnosis me with anything and confounded called me the "mystery person". It was a neighbor who is also a nurse who apparently recognized the symptoms and convinced me to see her rheumatologist. It took one look on the doctor's part and a series of blood tests to confirm what I was running away from. I lost my sons in the process as they have moved out and will not communicate with me or tell me where they live; I believe it is due to the extreme fear I felt at first. I have since began sessions with a psychologist in order to cope with this confirmed diagnosis in addition to the loss of my sons. The light at the end of the tunnel is that my doctor is convinced that it is limited CREST and the damage presently confined to my right arm. Please don't cancel any appointment because raynauds can appear years before the onset of the disease. Get an ANA test to be positive. I am content now, obviously because of the limited area involved, but you, without any present symptoms, have an early start on preventive measures.
  17. How does everyone deal with the "sick" days due to the condition we have. I've tried to use sick days as 1/2 days when I get struck with IBS. Sometimes the workload makes my arm so swollen and red, I can't wait until I can get home and put ice or the heating pad on it. My feet get so swollen, it's impossible to walk and then phebilitis sets in for days. I asked HR about my sick days, and was told in my employment capacity, I had unlimited, but after 7 days they will reprimand you. So far, I've had five this year and use my vacation and personal days (1/2 days if possible). Also, my company cannot regulate the air conditioning and heating in the bldg. after numerous attempts by repair companies. Winter and summer months require the employees to wear winter coats throughout the year. "Normal" people in the office are complaining they are "freezing" so you know what I'm going through. I've complained to HR I have Raynaud's and that my feet and hands are numb, but we are not allowed space heaters. I've convicned them to place cardboard of the vent in my office, but it's not enough. Presently I have an ulcer on my finger and big toe that will not heal and have to go outside to warm up several times during the day. What are my rights? Tru
  18. Sweet: That's exactly what I'm doing at this point, spoon feeding certain friends and relatives at this point and getting reactions as I'm not quite comfortable with the situation either as of yet. My two sons fled upon the news, which I never, ever thought they would desert me during this time and I haven't heard from them since, nor do I know where they presently live. I thought friends would shy away or be afraid to get near me, but you know what? Nope....they've been true friends. Tru
  19. Kamlesh: I haven't told my doctor but I have a patch on my stomach that is about the size of a coffee saucer and tan in color. Some days it stands out, some days it fades. I have conditions that I never tell the doctor and go to all efforts to hide in order not to face the reality of what I've known all along. Since finding this site, I've not only realized that this is a giving, uplifting, united group of wonderful people...but that there is life with sclero and crest. Thank you all so much............ I may not have my family's support........but thank goodness I have you all.........(Sorry..many tears coming now for the friends I've found). Tru
  20. Thanks so much for the hope. It's funny, the past few years people kept commenting about my lovely tan.........rarely in the sun. If you can think of any questions I should ask, please let me know before doctor's visit. Please remember, I'm gun shy and all alone at this point so I basically probably won't ask what I should; don't want to breakdown in tears and have to walk thru the waiting room. Just finished crying again. I have to get my act together and remember the person I was two weeks ago before the name was put to the condition. I'm a tough lady, just without family support at this moment, it's harder to get it all together. Thanks so much again........... Tru
  21. I know the feeling well. I've gotten responses from doctors "what can go wrong with you, will go wrong" and the nickname "mystery woman". Both of which I did not appreciate. All they wanted was to get me in and out within their 15 minute allotment time. The rheumatologist I'm seeing now, took the time to hold my hand, hand me tissues for my tears and asked how she could relieve my fears. Even when I went to get blood tests after just learning of the diagnosis, the technician kept say "gee, you're skin is soooooo tight......not what I wanted to hear at my lowest.
  22. Are you saying upon hardening of your hands they returned to normal? Are you giving me the hope that there are possibilities of that. My right forearm is stiffened to the point I feel like I could jump out of my skin. Are there chances of reversal? I taking a lot of notes from all poster's generous sharing, and will have enough ideas and knowledge when I sit down with my Doctor again next week. I've have had symptoms for 16 years, but was diagnosed two weeks ago as my skin began tightening beginning in December. Before that I was to an internist, infectious disease, two orthopedics doctors until I found the rheumatologist who immediately identified it and gave me hope that she believes it's been limited to the forearm. Truman
  23. Jefa: Thank you for your kinds words. Was just sitting here having a good crying spell, when I logged on and saw your reply. It's strange in that having symptoms all these years was tolerable, but applying a name to the condition makes you freeze and feel like a total time bomb. It's only been two weeks since diagnosis and I have to learn to get over these feelings. I just want to be the me (mentally) that I was two weeks ago. Will I ever feel that comfortable again? Truman
  24. The opposite happened for me. I knew for 16 years this was the cause and ran and ran and ran from doctors until my right arm became affected with the stiffening. I became brave, pushed out my chin and accepted the diagnosis and am presently with a fine Rheumatologist who has put me on a gout medication which has, in just 3 days, virtually eliminated the calcium :( deposits from rising to the surface of my skin. My sons left home; 26 and 30, left home immediately and will not respond to my emails or tell me where they live. I am totally alone at this point and don't know if I made the right decision to face the final diagnosis. I don't don't know if they're frightened or selfish, but I have to face this alone and I'm sure the stress is not a good mix to the situation. I have found that the few friends and co workers I've confided in have provided me more support and caring than my family.