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Everything posted by jefa

  1. Thanks, Shelley, for the update. Lisa, good to see your smiling face! :D As Jensue mentioned we were talking about you in chat Wednesday night with warmth and affection. We all miss your energy and think about you often.
  2. Welcome Yvette! Hope you will find this is a great oasis of information and support. Do post a message on the main forum introducing yourself and telling us why you are here. :D
  3. I'll bet you were terrific. I almost cried just imagining you up there in front of that crowd. I'd love to hear a recording. Emmi's blog is listed on our Personal Stories page under the Scleroderma Story Collection link: Living with Sclero. My life with juvenile scleroderma, in Finland. Epasen (Emmi). And now down to the important question: What did you wear? :D
  4. Then you will be happy to know that Jeannie has been working on an Abbreviation Glossary which will be ready soon.
  5. Hey, hey! This is terrific news. You are one of the best things about this place and I am delighted (as always) to be working with you.
  6. It is not directly comparable to SSD, but there are similarities. Disability Living allowance has two components, Care and Mobility. You can continue to work and receive one or both components. In addition, there is another benefit called Incapacity Benefit (IB) for those who are incapable of work. A person in the UK might be eligible for both components of DLA and IB, or IB with no DLA or any other combination. With IB you are not permitted (because you do not have the 'capacity' to work) but may be approved to do some work up to a limit. There are other benefits available depending on the circumstances, some of which are means tested (i.e. depending on your overall financial condition) and others which are not. These might include Carer's Allowance, Housing Benefit, Pension Credit, etc. All of these are explained at the www.direct.gov.uk site link in my post above.
  7. I'm glad you finally won that battle, Tru. Getting connected with that wound care center was a great move for you. I do hope you have similar good fortune with your rehabilitation. I will keep you in my thoughts for continued strength and peace.
  8. Hi, CREST at 16. Do you have a name? It would be so much nicer to be able to address you by name. :D These are some excellent questions. It's been a long time since I faced these issues and I didn't have the extra factor of an illness to contend with. It is an exciting time of your life and you should make the most of it. By all means stay as active as possible. If you enjoy sports and physical activity, go for it. Excess exposure to the sun can be harmful to anybody, so make sure you use appropriate sunscreens. Some medications may make you more sensitive to the sun, so keep an eye on the instructions that come with them. Alcohol is not a necessary part of college life, especially if you are into sports. If you do experiment, do it responsibly. Again, this may not be a wise choice if you are taking medications. There are other adverse effects such as increased problems with reflux and issues with the liver to think about as well. Try to keep a healthy balanced diet with fresh, wholesome foods and drink plenty of water. Junk food is a big temptation but try to keep with healthy options. Get plenty of rest, too. Try not to stress out too much. Enjoy.
  9. Have you been diagnosed with this Barefut, or just concerned about the possibility?
  10. It was yesterday, Jeannie. We had a party in chat! Sorry you missed it. I got an amazing edible bouquet sculpted out of fresh fruit - pineapple daisies with melon ball centers, leaves made of honeydew and cantaloupe wedges and lots of fresh strawberries on grapes on skewers, all stuffed into a good head of lettuce wrapped in curly cabbage like greens. Every last bit of it will be eaten. The cabbage, a whole pot full, will get cooked today. What a great idea it was. Anyway, now I am back to being the same age as you. :D
  11. Hello, Kathy and welcome to the Forums. We were happy to have you join us in chat tonight. Quite a few of our members have been diagnosed with morphea and hopefully they will be able to help you with some of your questions or compare notes. In the meantime, please feel free to read our page on Generalized Morphea.
  12. I'm glad it's working out for you. I am so lost when I lose my connection. I am still having problems with my ISP. They keep wanting to blame it on something else and are always insisting it is the router. I bought a new wireless router, but every time I decide to hook it up, I get frustrated and go back to the old one. I think there are some compatibility issues because our home network has so many different kinds (and ages) of computers and operating systems. As I used to be a first class computer geek, I feel definitely left behind with the current technology.
  13. Hi, Amanda. Just wondering about your clinic setup. In my rheumatology clinic, there are two teams of rheumatologists that meet on different days, so you will see one of the same team unless you get shifted to the other team. However, everybody who comes in gets weighed and has blood pressure taken on each visit as soon as you log in at the desk. My first rheumatologist seemed to be zeroed in on rheumatoid arthritis only and knew very little about sclero, so I got transferred to the other team where they know a bit more about it, even though they are not specialists. Any member of either team is light years ahead of the rheumatology clinic I attended at the old hospital (before we moved house). When I first came to the present clinic, I had to attend a day in the day ward getting passed around to various people for tests and talks, including an occupational therapist, physical therapist and a rheumatology liason sister who gave me her card in case I ever had any difficulty anywhere along the line. They have a computer there you can access to get printouts of blood tests, etc. if you want them. I still go in with bits of paper each time with my questions.
  14. Thanks, Jeannie, for clarifying this for us. For those of you who have missed other posts in this series of Quick Bytes, you can find all of them in the Welcome Forum.
  15. The generic name is mycophenolate mofetil.
  16. Hi, Angie I hope you will be able to find some help on our Disability Resources page.
  17. I am so happy to welcome you to our happy family. We are pleased that the Scleroderma Society (UK) has become affiliated with ISN and look forward to getting to know all of you better. For those of you who haven't found your way around yet, here is a quick link to the ISN Forums: Scleroderma Society (UK) sub forum. You will also find a link in the green section at the top of the main forum listing along with our other sub forums. Be sure to post an introduction in there when you settle in.
  18. Hello, Joanne. While this is not your first post, I see that you have not been properly welcomed, so let me do that first with a big hug. You have most likely looked at our page on Gastric Antral Vascular Ectasia (GAVE), but there a number of Patient/Caregiver stories at the bottom which may help you.
  19. Hi, everyone. I come from Clydebank, which is not that far from Glasgow, Scotland. I am going to be 62 in a couple of weeks and I have not been working since 2005. I found this site (well, it was on the MSN site back then) shortly afterwards. I have found more information about the various things going on in this one place than anywhere else, but the best thing is the wonderful warmth and support I get from all the lovely people. We share happy dances on good days and give each other a boost on the bad ones. But for me, the best part is being able to compare notes so I can go into my short little doctor's appointments with informed questions. I am really happy that Amanda is here to lead this sub forum as there are so many things that are different about the UK health system. Even the medicines have different names. I have been living in Scotland since I married my Glaswegian husband in 1997. Before that I lived in California where my grown children and grandchildren still live. I miss them, but I love the people I have met in the UK. I look forward to getting to know you all better.
  20. Hi, Lesa Welcome. I am glad you found us here. I am sorry to hear about your problems. How long have you had your diagnosis? I didn't ever qualify for DLA, but I had difficulties continuing to work. They tried to make some allowances, but for me the real issue was fatigue. I did manage to keep working part time for awhile, but there are limits I guess. Have you considered talking to somebody at your local Citizen's Advice Bureau? They may be able to help point you in the right direction. As for the DLA, you should be able to find the information you need online at Directgov, the website for government services in the UK: Disability Living Allowance - rates and how to claim.
  21. Hi Christine Welcome to our Forums. I am sorry you are troubled with these diagnoses, but you are in good company here. This is a great place for information and support. My first symptoms appeared to be rheumatoid arthritis (RA), though my rheumatoid factor was negative and x-rays have thankfully not shown any synovial breakdown. I still have inflamed joints, morning stiffness and marked fatigue though. I am not a doctor, but it is possible that your finger lumps could be Calcinosis. There are also some arthritic symptoms involving finger lumps called Heberden's nodes. You can read more about them in this Pubmed article on Heberden's nodes in osteoarthritis and rheumatoid arthritis. As for being cold all the time, there are plenty of threads around discussing this. It is a constant discussion on the forums. Poke around or start a new topic. Here is our page on Raynaud's which may offer some help. Hugs to you.
  22. Hello, Hippychik. Welcome to the ISN Sclero Forums. I am sorry to hear about your recent diagnosis, but believe me things will settle down for you after the initial shock. There aren't many of us who haven't been through the same sort of thing. It may be hard, but try not to panic. Scleroderma can play out differently for each person and there is no reason you can't continue to have a reasonably normal and long life. Relax a bit and wait for things to unfold with your doctor. It is good if you can see one of the scleroderma experts on this list by state. One of our best pages to read for a newly diagnosed patient is our Emotional Adjustment and Scleroderma page, in particular the section on Coping with Scleroderma. While you are figuring things out, feel free to ask any questions that come to you. You will find we are a great support group. Everyone here will listen and understand and be ready to share information and lots of hugs.
  23. Hi, Lynne Isn't this a cool new sub forum? I am definitely not a doctor, but I wouldn't panic about ulcers unnecessarily. I have had itchy spots on the skin of my feet and painful Raynaud's attacks on my toes, but have yet to see any ulcers. Our page on Digital (Finger and Toes) Ulcers has a lot of good information and pictures so you can get an idea what you might be up against. I was always a barefooter before I came to Scotland and it was difficult for me to learn how to dress properly in this colder climate. I used to wear nothing but the typical German sandals with the moulded footbed. I added socks at first, then went to a clog version. Now I am wearing sheepskin lined pull-on boots. I had one of my worst Raynaud's attacks in July when I went out to bring in an empty wheelie bin that was blowing in a strong wind. It was perfectly warm, but the wind blowing across my toes caused the attack. I usually find that the itchy spots respond well to treatment with a good emollient.
  24. Hi, Summer Here is our page on Diet and Scleroderma for reference. It is frustrating, isn't it? I don't have the bowel problems you have, but I am also struggling with weight gain from a combination of medications and lack of sufficient exercise. I am not a doctor or a nutritionist, but it seems that with your health issues, it might be a good idea to talk to one or both for help in finding effective methods for loss of weight. After talking to my doctor, he referred me to the hospital's weight management program and gave me an exercise referral prescription for a local leisure centre where I will be given assistance developing an exercise plan taking my physical limitations into consideration. The weight management program includes a twelve week nutrition class and possible consults with physical therapist and/or psychologists. I think it is important to have some kind of support system in place. Motivation is a big factor. I also use a desktop nutrition diary which allows me to track my nutritional needs against what goes in my mouth and the amount of exercise I do. The simple act of recording everything that goes into your mouth is often enough of a jolt to set things in motion. Good luck to you.
  25. I wish you good luck. I filed three years ago and I still do not have an answer. I am waiting for information on my request for reconsideration. Each case, as I am sure you know, is judged on its own merits. Filing should be done as soon as you are certifiably unable to work to seal the date. I don't have a precise diagnosis, but at least my date is protected.
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