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Posts posted by jefa

  1. Hi, m/o Ashu and purplelibrarian.


    You both have good points to make, but ultimately, as purplelibrarian, says, what happens to your body is a personal decision. We can't always be sure that the information we are getting is accurate for our circumstances, nor can we expect anyone else (including the doctor) to know all the mitigating factors. The best we can do is to stay informed and make sure you are heard. And of course, you will keep looking until you find someone who will listen, but even they might not have all the answers. Good luck with your ankle, purplelibrarian.


    And Dr Damayanti you have no way of knowing for sure whether the lack of physical therapy is what caused the crippling. Sometimes the progression is strong as in the case of your daughter and we can only try fight it as best we can. As a parent, though, it is hard not to have some guilt about the part we may have played.

  2. Hi, Postie. First let me welcome you to the Forums. I hope you will find it a good resource for information and support. I used the Search Forum button in the purple toolbar and found this thread dealing with the same question. I do not know if this is the one you were reading, but in it Janey and Jeannie give some good links to follow through on:


    Question on RNP blood work


    As for the actual values, I don't have any personal experience, but perhaps someone else can share their own.

  3. Hi, purplelibrarian, and welcome to the ISN Sclero Forums. I am glad you found us but sorry you are having a bad day. We all need to complain now and then. It is all very frustrating at times. I am not a doctor of course, but it would be nice if your rheumatologist had a bit broader view of the efficacy of various complemetary therapies. Unfortunately, many specialists have a rather narrow perspective.


    I hope you will find some interesting information on our Scleroderma Alternative Therapies page. I have found it very helpful.

  4. Aw, thanks, guys. :D I figured I'd better jump in here before somebody actually starts playing the bagpipes.


    Leave it to Shelley to find new ways to squeeze another ounce of work out of us. Seriously, I enjoy working and playing with every one of you. Thanks for being who you are and warm, gracious hugs to all.

  5. Welcome to the ISN Sclero Forums, Cindy and Jill. It is good for both of you that you are active and I hope you will be able to continue with this.


    Cindy, certainly having your new child will keep you moving and it is always good to have a focus outside of yourself for motivational purposes.


    Jill, as someone who works with chronically ill people, I am sure you will be a valuable contributor on the forums.


    I look forward to getting to know each of you better. Please let us know if there is anything specific you'd like help with on the forums.

  6. That sounds like a lot of fun. Having just returned from a trip to California to visit my family, I can attest to how energising AND exhausting the company of thirty-somethings can be. I can't remember ever being that much fun when I was thirty.


    Well, maybe... :lol:

  7. Hi, Penny


    The single most encountered problem with photos is the size. The program is designed to handle smaller photos and many digital cameras now produce huge files that just crash the gallery program. You should use whatever photo editing software you have to resize each picture. The maximum dimensions it can handle are 600 pixels wide and 400 pixels tall. The instructions give even smaller dimensions than that.


    If you right click on your image and then click properties, you can see how big your pictures are in pixels.


    Hope this helps.

  8. Hi, Eos


    I am not a doctor and even if I were would not be in a position to make a diagnosis without examining you and looking at your history. The fact that you mention the lower jaw makes me think of TMJ (Temporo-Mandibular Joint) involvement which can be related to Scleroderma according to our Dental Involvement page, though numbness isn't specifically mentioned in this eMedicineHealth article on TMJ. There are quite a number of conditions which involve facial numbness so it is important that you check with your primary care physician to find out the source of your own difficulty. Do let us know what you find out.

  9. We seem to have quite a few new members joining recently. I try to welcome each of you individually, but I know I have missed a few people while I was away recently. Please know that we are here for all of you and hope to eventually get the chance to say hello or give a hug.


    This is the main Sclero Forum in which we focus on issues relating to scleroderma and related matters. In addition we have the Sclero Den and its subforums, Sclero Kitchen, Sclero Chat (with news about our live chat feature with schedules), and Getting to Know You. These were created to allow us to speak more casually in a social setting. Visiting these forums will allow you to share important family news, talk about recreation, share recipes and generally get to know each other better. Occasionally you may see a thread being moved into a forum where it is likely to get the right responses.


    Our team of support specialists are volunteering from different time zones, so please be patient if your message doesn't show up right away. Please also take the time to read the Forum Guidelines which are linked at the top of every page. As it says in the guidelines, we are a wonderful resource for general support and information for people who are interested in scleroderma or related illnesses. Post to the list as often as you like, especially if it is to lend kindness or comfort to others.

  10. Welcome to the ISN Sclero Forums, Janet. I am so glad you have decided to jump right in with a thread. We don't have PAs in the same sense in the UK, but many rheumatology clinics are in teaching hospitals, so we rotate seeing junior medical people with our rheumatologists. As Shelley mentioned, I often spend more time with those and questions get raised that wouldn't in other circumstances. Sometimes, they will even go and get the rheumatologist to discuss something so I get both and the opportunity to hear him discussing with someone else from a different perspective. The quality of the service is dependent on the quality of the teacher involved.

  11. I am glad to hear of your good results with Cellcept, Alice. I see this is your first post and I'd like to welcome you to the forum. I look forward to hearing more of your experience.


    Anderson, I'd also like to welcome you to the forums and hope you find some relief soon, so you can relax and enjoy that little one, hard enough work under the best of circumstances. Do you have some help?

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