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Everything posted by razz

  1. Hi Muffintop and welcome! Hopefully I can give you some advice and share my experience with you my fellow comrade. I was working full time as a patrol officer in Chicago when I developed an aggressive form of systemic scleroderma. At the time I was experiencing numbing of my fingers in the winter of 1997. I chalked up this unusual sensation to the extreme cold weather and thought it was a temporary condition. That is until a few months later I developed tingling and painful swelling in my fingers, hands and feet. I realized this was becoming serious because being able to use ou
  2. Amanda, There is a study of twins where the link of fetal cells passed from one to the other is the possible cause of scleroderma. I'm not sure of the study's name. I find the microchimerism theory very interesting too. Hugs, Razz
  3. I didn't think my ears were that noticeable! I guess I should add shrunken ears :blink: to my list. What's next....shrunken head probably. I've always had small ears and thought they were cute looking. Well, they did get a wee bit smaller to the point where I can't put earrings on anymore but it doesn't bother me. I was thinking about getting my ears repierced since I miss wearing my earrings. Razz
  4. Hi living linda, Sorry to hear your esophageal stretching this time around didn't improve your swallowing. Did you mention this to your doctor? I am not medically trained in any way but I would agree with you that if the doctor felt rushed and was behind schedule he may have performed the procedure quickly. There could be other possible reasons why you haven't felt any improvement but I would definitely call your doctor so he is aware that you are not feeling relief. I am sure he wouldn't mind seeing you again to determine what course of action he should recommend. Great ideas
  5. living linda, I am sorry you are suffering the consequences of spring cleaning. :blink: I, and I'm sure many others, will be attempting some sort of cleaning project since the weather's been warming up. I have to tackle my basement and sort through boxes from a house fire we had three years ago. I managed to go through half of them with a helper two years back. I couldn't believe the stuff I had saved, donated things I didn't use and threw out so much accumulated clutter. I still have at least 10-25 boxes to go through. Usually I try not to accomplish a major project in one da
  6. Hi everyone! I am glad to see this post brought up again because it is a question I still wonder about on occasion. Dental work involving amalgam metal fillings (with mercury) has always been of interest to me since I did have extensive dental work the year prior to my first symptoms. I had a root canal procedure done along with fillings, which I've also read could be a potential cause. I have considered replacing my metal fillings but chose to leave them in because of the cost. Instead when I require additional fillings, I ask for the porcelain/ceramic fillings. I found a dent
  7. I don't where I inherited my miniscule mouth and thin lips. My dad's smile reaches ear to ear and my mom's mouth is of a normal size. Going to the dentist wasn't a problem back in the day because the skin around my mouth would stretch like rubber. Now, I can't grab an apple and bite into it or munch on a corn on the cob soaked with butter. That doesn't mean I can't eat those foods. I just can't do it in the quick grab and carry way. It's funny how I thought women who wore lipstick past their lipline were eccentric looking. Now, I can say move over ladies and make room for me.
  8. Thanks Susie! Who could imagine equating eating food with being a chore? I stock up on my favorite foods. Those highest in calories, no substitute ingredients, only 100% ingredients as much as possible. I'm looking forward to sporting my new title, Granny! Hugs, Razz
  9. Hi Rachel, I wanted to write earlier but got caught up in a baking fiasco (my daughter is expecting and wanted banana bread). I finally sat down and am so impressed by all the responses. I feel like having a smoothie, right now! I can relate to this topic because I have a hard time gaining weight. It's no picnic being barely 90, okay it's really 89.4 pounds. And, I don't like it. I try really hard to gain weight but I think several things are going on with your mom. Being in the hospital is hard (especially long-term). Not being able to get up and walk around when you w
  10. Hi Kaurie, The best advice I can give you is stay positive, hopeful and always have faith that you will get better, feel better and most importantly draw on your sense of humor! If you're running low on humor, we have plenty to go around because that's what keeps us going as you can see. I understand how difficult it is waiting for a doctor's appointment or test results. Using this time to prepare yourself for your doctor's visit is a great approach. Be sure to find out as much as you can about the doctor's background, how long has he been practicing, his experience with scler
  11. Hi Penny, Would you (or anyone here) by chance recall the name of the House episode on scleroderma? :huh: The episode I watched was not the one I was hoping for, even though it was interesting. Thanks for your help. Hugs, Razz
  12. Penny, Is the name of that episode called "Skin Deep"? If it is, it's on tonight at 8:00 p.m. central time on the USA cable channel. I hope that's the one because I'm not answering the phone for that hour. :) Thanks, Razz
  13. Judy, I saw that this morning and could not believe it!! Sure enough the guy's finger was renewed, complete with fingernail and all. That gives hope to so many people. I would definitely like to hear about more people trying out this new method. Maybe, we'll be reading about you in the news. I'm keeping tuned. Hugs, Razz
  14. Susie, We'll be standing by with big gentle hugs!! Hope all goes smoothly! (((((Big gentle hugs,))))) Razz
  15. Kids are too cute! One day my mom was walking with my daughter who was 2 years old to pick up her sister from preschool. After walking for two blocks, she says Grandma I can't walk anymore my legs are broken. Razz
  16. Amanda, You're a great example of persistance! Keep calling until someone gets back to you with the test results AND an explanation of the results. You're doing great staying on top of things before they have a chance to go any further. I've had ultrasounds of my heart in the past and it's always heartening to see my ole ticker pumping away. It just confirms that I'm still alive even if I don't feel it. Good job! Razz
  17. TOB, I agree with everyone, you should get a second opinion and find a doctor who specializes in rheumatology not charades. This one sounds like he put his brain on pause and couldn't give a comprehensible explanation for your condition. You need a rheumatologist who specializes in scleroderma to examine you and order all the proper tests so you can begin a suitable treatment plan. I lost count of how many doctors I fired :blink: before I hired the right one to treat me! If you feel better taking someone with you to your appointment to help you drill the doctor, don't hesit
  18. Dear Judy, I am so sorry to hear what you are going through. Thank you for your considerable contributions and all your hard work, you are amazing! I also wanted to thank you for your story because it was something I didn't know until recently. Late fall, last year, I was doing yardwork and used my weedwacker for over an hour. The constant pressure on my middle finger from holding the weedwacker did something to cut off the circulation along my middle fingernail. Over time I thought it was a regular ulcer and treated it as such until I noticed it wasn't healing, it was dying off.
  19. RobinAustin, I'm glad to hear you're back! Thanks for letting us know how your appointment went. It's helpful for us to hear what your doctors say because it might benefit someone in the same situation. I am especially glad you don't need a transplant. That's the best news! We take the good with the bad, we'll just keep working on the bad. I'm rootin' for you to keep getting better. I agree that I feel better myself when I'm helping someone else. Wishing you the best luck, Razz
  20. razz

    My Child

    Dear TJW, I am so sorry to hear your daughter was diagnosed with scleroderma. I had not heard of treating a rash with dandruff shampoo (although that doesn't mean it's not a method of treatment) but I was perturbed to hear of the resulting effects. I am also not medically trained, but it does sound like it exacerbated the condition. Unfortunately, an appointment for the best diagnosis can take weeks of waiting and when you're in pain or discomfort you just want immediate relief thinking it is something minor. I, like yourself, would probably have gone to a local walk-in clinic too.
  21. puzzlingpatty, My heart goes out to you. I am sorry to hear you have been diagnosed with several autoimmune symptoms. Jeannie has given you some very helpful links in finding a specialist and dealing with the emotional adjustment and heartburn. Many of us have experienced the beginning stages of our illness with uncertainty, pain and fear. Emotional support is so important and will get you through the difficult days. Pain management is crucial and will help keep you mentally focused so you can set in place a treatment plan, find a good specialist and organize your life to a
  22. Good question. In my case, I had aggressive systemic scleroderma and experienced the symptoms immediately within a sort time period. From diagnosis in 4/98 when my skin was still flexible, my skin tightening began within seven to eight months. It began with extreme itching all over, arms, legs, chest, shoulders, neck, back etc. It felt like a bad case of dry skin. Then I recall my skin on the tops of my hands, arms and shins taking on a shiny appearance and the density of the skin started feeling very hard and thick. It became uncomfortable when the skin from under my chin down to
  23. Hey KD8410! I am such a slow poke. I just scrolled down the screen and found your message. I am so happy for you. Yippeee !! That's the best feeling ever! Finding a way to do a house chore differently, yet perfectly. I like your idea about pre-soaking the dishes. You made my day! Happy dance, happy dance. :) You know doing dishes was always a big deal with my daughters, no one wanted to do them. I would end up washing them and my fingers ulcers would ache. Ever since the arrival of my dishwasher 3 years ago, it's been smooth sailing! I love my dishwasher.
  24. KD8410, What I would do for a normal night of good sleep without waking up, tossing and turning and making a trip to the throne (potty). My routine is I watch a bit of television until I get sleepy. Around 2:30 am, I drag my groggy self from the sofa to my bedroom. If I had a late dinner or snack, (10:00 p.m. is the latest) then I end up sitting with my back against my pillow, trying to fall asleep. This usually leads to waking up around 4:00 am with the pillow folded in half and my body in an abnormally crooked position. I can't say I remember having a night of refreshing rejuvena
  25. Jeannie, Congratulations Jeannie on your promotion! Your knowledge combined with your great sense of humor are a huge asset to this board. Thank you for your continued contribution and dedication in helping others living with and understanding scleroderma. You're the best!! Hugs, Razz
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