Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by jefa

  1. jefa

    On the outside looking in

    Hi, Krisplady I am so sorry to hear about your mother's long term problems, but I am glad you have found a place to vent and share your experiences with others in a similar situation. This forum has been an oasis for caregivers and family members as well as for those going through the disease itself. Let me welcome you to the forums with a big hug. If there is anything specific you'd like help with, just let us know. It is good that you have received good counsel on thinking of yourself in the long term and I wish you luck with your college work. In the meantime, many of us have found help in our Emotional Adjustment and Scleroderma pages -- a wealth of information there.
  2. jefa

    Shy girl has entered the forum

    Hello, Linda Glad you finally decided to join us out in the open. Welcome. Since you know all of us so well, why don't you tell us a little about yourself? I look forward to getting to know you better. We are happy to have you.
  3. jefa

    New ISN Page: Marriage and Health

    Thanks, Lisa and thanks to Janey and crew for pulling it together for us. I seem to spend more time in the emotional adjustment part of the website than any other.
  4. jefa

    Skin tearing

    Hello, Cemile Welcome to the ISN Sclero Forums. I am sorry to hear about your problems with skin tearing, but I am glad you found us. I don't personally have any experience with this problem, but hopefully someone else will be able to comment. It may be a little quiet here this weekend so please be patient.
  5. Good idea, Lynne. You could try it with safety pins first to save that sewing just in case. I will join the club and admit that I go without a bra most of the time unless I go out. I have also shifted to a slightly larger size back, no wires with broad, soft straps. I tried the sport bras, but found them a real struggle to get into, not to mention that ones in my size are a rarity. I have found that a deep v-neck looks a lot better without a bra, giving a slightly more normal looking pseudo-cleavage than a higher neck tee shirt. Penny, I have already wandered into 'crazy aunt' territory and I don't mind a bit. I always walked a bit south of fashion in my youth and I am still bucking the trends. I wear what I like with extreme satisfaction.
  6. Hello, Sharon Thanks for giving us such a thorough update. I remembered your name, so I just read through your other posts. It is good that your next appointment is with the dermatologist (at Mayo, according to an older post) so you can address those new skin issues then. I am not a doctor, but June is not that far away and I don't think there is anything going on that would need to be seen sooner. You also mentioned in an earlier post that your rheumatologist has started you on Plaquenil and that he said it would be at least five months before it started to have any effect. I can attest that it does take a while to kick in. For me it was about seven months before I could notice a change. By the time of your September appointment, you should have a pretty good idea whether it is helping. What seems to come through most in your message, though, is fear about how you would be able to care for your son if things get worse. It is impossible for anyone to guess how this disease will play out for us, but I can tell you that stress itself can really do a number on you if you let it. I found a great deal of perspective from reading the Emotional Adjustment and Scleroderma pages. There is much on those pages from discussions of anxiety to quality of life with scleroderma and many personal stories in each section. It might be a good idea for you to talk to a counselor about how you will be able to keep up with your additional needs in the future. In the meantime, we are only a click away when you need to talk.
  7. jefa

    Hello - I'm new, with CREST

    Hi, Winter. I am glad to see you getting so many responses to your questions. I'd like to join in welcoming you to the forums and getting to know you better.
  8. Hi, Wohali. You make some interesting points. The article you refer to on the Choctaw studies can be found on our Causes of Scleroderma page. What they are saying in the article is that all the Choctaw members in their study could be traced back to five specific Choctaw families in the 18th century, not the first five Choctaw members. In essence: "The findings, according to the authors, are specific to descendants of the five families, not to Choctaws in general, making the greater incidence of scleroderma among Choctaws a familial rather than ethnic phenomenon." It is benzocaine rather than benzene that is in the throat sprays. I know benzene used to be used in the original decaffeination process for instant coffee products, but it isn't used any more.
  9. jefa

    How many people travel regularly?

    The thing I tend to do is cram too much activity in. Lately I have been trying to schedule in the same naps I have at home. Even if I don't take them, I am keeping some time 'unavailable' for fatiguing activities. It is so easy to overdo it otherwise. Also make sure to wear and take comfortable shoes.
  10. Jill, thanks for sharing your rheumatologist's comment with us and for adding your very astute philosophy of life with a chronic illness.
  11. Thanks, Judy This is an excellent story with lots of details, some of which really hit home. I am grateful to Julie T. for taking the time to share this information with others who might benefit after going through the painful loss of her mother.
  12. jefa

    Tight but not hard skin?

    Hi, asksd I noticed this was your second post and on looking back I see we missed welcoming you into the fold. I am sorry about that oversight, but glad you are still continuing to read and hope you will continue to share.
  13. jefa

    What do migraines mean?

    Hi, marktwain. Luvbnmom is right about the migraines. Our page on Brain (Cerebral) Involvement talks about vascular headaches, of which migraine is one type. She should definitely tell her doctor about these headaches.
  14. Hello, Kotton First I'd like to welcome you to the forums. I hope you will be able to find many answers here and share your experiences with others. As for the symptoms you describe, none of us here are doctors and there is no way we could advise you on your own circumstances without a personal examination. I would call your doctor's office and describe the symptoms you are feeling. Stress can do strange things and we can become anxious over changes, but you don't won't to let those kinds of symptoms go ignored.
  15. There are lots of recipes on the internet for non-dairy smoothies made from everything from almond milk to green tea, of all things. Search for "non-dairy smoothies".
  16. Yes, I did notice that, guys (after I got over the misspelled Raynaud's in one of the headings). I guess it is true what they say: The most important thing in the world to know about scleroderma is www.sclero.org!
  17. jefa

    cute things kids say

    How sweet - they are so wonderful at this age.
  18. jefa

    From finger ulcer to amputation

    Wow, Judy. So sorry to hear about this latest development, but thanks for sharing your experience with us. I am so grateful for all you have done editing the personal stories and your work on the Voices of Scleroderma series. I do read the technical medical information but to me those personal stories (and those here in the forums as well) are the way I absorb the 'feel' of things. Nina Lynn, the important thing to remember with both gloves and socks of any kind is they will insulate cold as well as warmth. If your feet or hands are cold to start with, the protection will keep them that way. You have to get your hands and feet dry and warm before putting on the socks and gloves.
  19. jefa

    Our Sweet Peanut

    Thanks, Clementine, for letting us know. I will certainly be sending warm thoughts her way.
  20. jefa

    My Child

    Hello, TJW. I am sorry to hear that you and your family have been given this rather sudden jolt, but I am glad that your daughter is getting some appropriate attention now. I am curious about the hospitalization, though. What was the reason given for it and how long was she there? I have seen several posts of early confusion about the possibility of a fungus on the site, so it does not seem unusual, though I have never heard of this particular treatment. I am not a doctor either, but I do think Jeannie's logic makes sense. Please keep us posted on what happens. We have several parents of young scleroderma patients on the site and a few forum members who are teenagers themselves. Please let us know if there is any specific help you need in finding your way around the site.
  21. jefa

    Biliary problems!

    Hi, Sallyann. I see this is your first post, so I would like to welcome you to the ISN Sclero Forums. I am sure you will find this a great place for information and support. Are you seeing a sclero specialist or a rheumatologist? What have your doctors attributed your gastric problems to?
  22. Just can't wait to share this item from the newsroom: Jeannie McClelland: ISN Sclero Forums Manager. Jeannie has been promoted from ISN Sclero Forums Support Specialist to ISN Sclero Forums Manager. Jeannie, who has also known as J.J. Knitter, has been training for this position for the past month. In this new position, she will be responsible for the management, development and training for Sclero Forums. Posted 03-16-09. As J.J. Knitter, Jeannie has been a long standing member of the Forums. When we became aware of her skills and talents in her new volunteer roles, we decided to ask her to join the management team as ISN Sclero Forums Manager. In this role, Jeannie will oversee the smooth function of the message boards and the development of tools to enable all of us to make the most of the forum experience. Congratulations, Jeannie -- you will be a terrific leader for a great team.
  23. jefa

    Computers - Love/Hate Relationship

    Yeah, Judy, I know what you mean. We have been through this before. The help desk people are so frustrating. I have a background building and testing computers, so it gets extremely annoying when I have to talk them around to my position while they go through their checklist. I love it when I finally get connected to a proper tech type. I don't think it is the modem this time (last time it was) but something on their end, especially since their website shows a red flag on broadband, though no particular problem has been identified. I just wish the help desk people bothered to look there. It seems to be working better at off peak hours (like now). I don't envy you having to move again so soon. and Jeannie, we might try a couple of tin cans on a string - or even smoke signals. We can't afford to lose our connection, can we? :D
  24. jefa

    Computers - Love/Hate Relationship

    That sounds like my new netbook, Penny. I love it. Great for taking along to places. I do hope you can save your files. We have a couple of extra usb hard drives for storing backups of all our stuff (my husband and I are both writers). These days there are all kinds of easy to use options.
  25. My mother and several of her relatives call those wall pictures murials. In fact they would define murial as a 'pixture' that takes up the whole wall. I also have problems combining parts of words. I don't know how many times I have said mastly, then corrected myself by saying monly -- instead of mostly and mainly.