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Everything posted by jefa

  1. Great news, K. I am sure this is a tremendous weight lifted. I wish you all the best in your continued treatment of whichever this turns out to be. I am glad you have finally attained right medical team, including yourself!
  2. great film. and here I thought you might actually have been from oklahoma (where I spent four of the best years of my childhood). :D
  3. jefa

    Chat Room

    Yes, we have missed you. It's today, you know. :D
  4. jefa

    What a week!

    Body parts are like kids -- they never do what they are supposed to at the doctor's.
  5. jefa

    Medical Alert Sheet

    Your Own Medical Information Card. Just fill in the blanks on this do-it-yourself PDF form to keep your medical information handy. The form provides space for your medications, allergies, emergency contact, doctors, and preferred hospitals. Designed for the ISN by Lisa Volz, ISN Artist. Is this what you are looking for? If it won't open for you right click on it and choose the option 'save link as'.
  6. jefa

    Antidepressant Withdrawals

    Hi, Christy. I know it's hard to deal with the changes when switching drugs, but I caution against doing anything without discussing it with your doctor. Give him or her a call and ask for advice.
  7. Great news, Jeannie! So happy to have you aboard the volunteer train. You will absolutely love working with Janey and the rest of the newsroom crew. Warm hugs to all of you.
  8. jefa

    Intense pain between shoulder blades?

    Sounds painful, Erin. Sorry to hear you are having these pains. The last time I had such a pain, it turned out to be pleurisy. Since you say it is constant, it could even be disc related. Or even related to ergonomics of your work habits. Whatever it might be, the most sensible thing is to get it checked out by a professional Let us know what you find out.
  9. jefa

    Undergoing Stem Cell Transplant

    This will add a whole new meaning to the expression "salad days" for you. I am glad improvements are starting to appear. :D
  10. jefa

    Chat Room

    That seems to be the biggest problem with first-time chatters. Glad you finally made it in.
  11. jefa

    What a week!

    It sounds like absolute misery, but I am glad things are working out. I hope Grace is feeling better, too. As for spending the night with an extra family member, it all sounds very exciting (if not exhausting). I love the way your extended family rallies round for one another in times of need. You are very lucky and so are they to have you.
  12. Terrific news, Karen. I think you will make a super nurse - I would hire you. :)
  13. jefa

    Undergoing Stem Cell Transplant

    Hi, Sharon and Craig I just wanted to stick my hugs in here some place. I am thinking about both of you with very warm thoughts (completely sanitised, of course).
  14. jefa

    Horrible Feet Odor

    Hi, Desperate. Sorry to hear about your problem. As far as I know, foot odor is not a symptom of or side effect of treatments for scleroderma, which is our primary focus in this forum. I was unable to find anything on the site. It sounds like you have done some research on your own. What does not appear in your list is the question of shoes and socks. Some shoes tend to trap moisture and tight fitting socks or those made from synthetic fibres also prevent feet from drying naturally. Try cotton socks. Make sure to change them regularly. Have you tried charcoal insoles? They can absorb odors. Talcum powder or deodorizing foot powders sprinkled in the shoes may help. You can put some baking soda inside your shoes when you are not wearing them. Trade off shoes to give them some airing between wearings.
  15. jefa

    Shop for ISN this Holiday Season!

    This couldn't have been timed more perfectly, Shelley. I just cannot cope with crowds and shopping. Additionally, most of the people on my shopping list are in the USA, so I normally do quite a lot of shopping through the internet. During the past weekend I have completely most of my shopping for the US folks using this link. One very important thing to remember is to select the International Sclero Network as the recipient of the donation. In the top right corner with the green banner, you will see these words: You are not associated with an organization! Please go here to find your organization. Please make sure your cookies are enabled. Once you do this, your cookies will ensure that it comes up automatically each time you shop. Because I didn't see the selection option, my first purchase didn't count, but all the rest have been credited properly. When you shop at the various places, the amount that goes to ISN will be displayed on some of them (top right portion of your screen), so I made sure to shop at the places with higher percentages. I was amazed at some of the discounts. One of the items I sent was $20 cheaper than the same item sold through FTD, plus there was free shipping on that particular offer. Don't forget to bookmark the link.
  16. jefa

    Anyone had face pain?

    I am so sorry your trip to the dentist didn't solve your problem. I am not a medical professional, but it sounds as if it could very well be trigeminal neuralgia. Trigeminal neuralgia (TN—tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. Trigeminal Neuralgia Association. In the site linked above to the Trigeminal Neuralgia Association you will find a page with a good explanation and pictures to illustrate. Here is a direct link: http://www.fpa-support.org/aboutfp/index.html
  17. jefa

    Undergoing Stem Cell Transplant

    Hi, Sharon and Craig. Just wanted to let you both know that you have been in my thoughts. This is exciting and scary business. I am just glad you are able to be together through this. Hugs to both of you.
  18. jefa

    Typing Gloves

    I have tried all sorts of combos and couldn't type with the finger tips covered. I finally discovered sock tops. I cut the long tops of worn out men's crew socks (black is my favorite). I fold the cut edge back one turn and wear them over my hands and wrists up to the first knuckle of my fingers and thumbs. You can adjust them quite a bit and they are easy to push up or down when you have to wash your hands or do something that requires more dexterity. They also make good warming cuffs to fill the gap between short gloves and coat sleeves. I keep a pair by each computer and one in my purse.
  19. jefa


    Hi, Nina I am sorry you are still having these difficulties. You got most of the words right the second one is Antral. Gastric Antral Vascular Ectasia (Watermelon Stomach) Hope these links will be of use to you and others who may be interested. I do think it is a good idea to see the specialist your doctor recommends. Several members have had similar situations and eventually got things under control. Big hugs to you and good luck.
  20. jefa

    Antiscleroderma-70 antibodies

    Hi, augiterfaninatl Amanda is right. Here is a link to a recent thread which discusses this test a bit more and also includes some links. http://www.sclero.org/forums/index.php?showtopic=6855 I assume that your mother has seen a rheumatologist who has run the test. Hopefully the rheumatologist will be able to tell you a little more as he or she reviews all the other test data and the clinical observations. I wouldn't panic too much about what you read - much of the information found on line can get pretty scary, especially the older stuff. You can feel comfortable with the information posted on the medical pages linked on this site. In the meantime, welcome to the ISN Sclero Forums. I look forward to getting to know you and your mother better.
  21. Hi, Barefut. I think she means that having a positive scl-70 indicates a greater likelihood that the disease will be more progressive than if you have a negative scl-70. This link (also found on the page linked in the post above) explains a little more but does not answer your question on whether the degree of involvement is equivalent to the level of the test results. Perhaps someone else can answer. Anti-scl-70.Evidence-based guidelines suggest that anti-Scl-70 antibodies are very useful in the diagnosis and clinical management of SSc patients and also to establish prognosis in these patients, particularly those with diffuse skin involvement. PubMed. Autoimmunity. 2005 Feb;38(1):65-72.
  22. jefa

    Finally finished my study!

    I'll bet you are relieved on the one hand (31 weeks is a long time) and anxious for the results on the other. I look forward to hearing the results when you get them.
  23. jefa

    Scot Trial

    Hello, Hudson's Mom, and welcome to the ISN Sclero Forums. I split this thread from the one you originally posted in since it was from 2006, but I have included a link to it here for those who want to read more: http://www.sclero.org/forums/index.php?showtopic=293 I am happy that you seem to be having good results so far and look forward to hearing more about the trial and also to getting to know you better. Nina, I know how you feel about all of this, but I personally hope you don't qualify, in that it will be better if you never have the lung problems.
  24. jefa

    Hepatitis C

    Hi, Lynn I know you were worried about this test, which you had as part of a whole panel of liver tests, and I do hope the second one comes back negative. Here is a link to our medical page on Liver and Spleen Involvement which has a section on Hepatitis C and also several patient stories which you might find interesting. I will be thinking of you while you wait and wish you luck with all of your challenges.
  25. jefa

    Raynaud's & Hand Trauma

    I have found that stress increases a Raynaud's attack, so it is no surprise that the stress of trauma would do the same. Last year I stubbed my toe really badly and it set off an attack on both feet (sympathetic?).