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  1. #1
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    Question New questions

    Hi all,

    If you can spare a few minutes and answer these questions for me I would be very grateful.

    1. Has your lupus affected your social life?
    2. How did your friends and family react to your diagnosis?
    3. Have any of your doctors ever given you information regarding social support?
    4. Have you joined a face to face support group in your area? If there isn't one, have you thought of setting one up?
    5. Do you prefer online communication due to any limitations of mobility that lupus has had on you?
    6. What would you say are the main benefits of joining an online forum as opposed to a face to face group?
    7. Why did you choose to seek support online?

    Thank you,

    Harriet xxx
    Last edited by AlphaWolf06; 03-11-2010 at 11:06 AM.

  2. #2
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    Hi Harriet,
    1. Has your lupus affected your social life? I have mobility problems because of my AI issues, so I get around on a cane and I'm a little slow. I refuse to let it stop me, though. I've just now come from a luncheon with a dozen other ladies. I park in the handicapped spot and struggle into the cafe, but I still have fun. The thing that affects my social life the most is the Spasmodic Dysphonia. I'm in need of a Botox injection right now, so my voice is very weak and shaky. This makes it tough to get my opinion into the conversation and to make myself heard. Coupled with the impaired hearing from the Meniere's, a noisy restaurant is really tough for me, but I do it anyway! l

    2. How did your friends and family react to your diagnosis? My family has been very supportive. My hubby is very protective. When I was still teaching, my students were also very protective of me. My co-workers didn't really treat me much differently, but those who were my close friends were supportive.

    3. Have any of your doctors ever given you information regarding social support? No

    4. Have you joined a face to face support group in your area? If there isn't one, have you thought of setting one up? I recently read that there is a face-to-face support group for Sjogren's in a near-by town. I might join that group.

    5. Do you prefer online communication due to any limitations of mobility that lupus has had on you? Yes, sometimes driving can be a bit painful.

    6. What would you say are the main benefits of joining an online forum as opposed to a face to face group? It's very convenient. I can get online anytime day or night at my convenience to check on the recent postings. I also enjoy the fact that I've made online friends from all parts of the US and from other countries. It's great that we can compare treatments and opinions that others have experienced. This way, we might learn about something new before our doc does.

    7. Why did you choose to seek support online? I joined to find out more information about what I was dealing with from the real experts - others who are also dealing with it. I stayed because I found friends at WHL and because I want to give back and help others.

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    AlphaWolf06 (03-12-2010)

  4. #3
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    hello harriet question 1 yes my social life has been affected bingo was apastime of mine as well as the raffles but due to mobility this has become hard as well as the fatigue. fishing was something i loved to do but that has also become hard due to muscle weakness fatigue and the sun i loved to go to shopping centre but this is also difficult. question 2. i had different reactions from support to annoyance from family members also some of them said they thought it was in my head. question 3 no the doctors have not given me any support. question4.do not have support group in my area. question 5 online support is easier for me and i have met a lot of great friends from all over the world who understand what i am going through this makes it easier. the support online has helped me deal with this disease better. hope this helps kim l

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  6. #4
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Harriet, here you go-


    1. Has your lupus affected your social life?

    Initially, Lupus pretty much destroyed what was a very active social life. I gave up on having a social life for many years, and have only recently started to get back out again.

    2. How did your friends and family react to your diagnosis?

    Friends stopped calling and coming around. My family gave me no support at all. I dealt with my new SLE diagnosis alone. I now have new friends who are very supportive, and my family and I have mended fences, and they are now very supportive as well.

    3. Have any of your doctors ever given you information regarding social support?

    No, none whatsoever.

    4. Have you joined a face to face support group in your area? If there isn't one, have you thought of setting one up?

    I would love to belong to a face to face support group, but I live in a very remote, and isolated area. To the best of my knowledge, there are no other people (other than my mother) in my area with Lupus. I would definitely start a face to face support group here if there were other Lupus patients in my area.

    5. Do you prefer online communication due to any limitations of mobility that lupus has had on you?

    No, not really.

    6. What would you say are the main benefits of joining an online forum as opposed to a face to face group?

    Since I've never attended a face to face group, I can only speculate. I would say the main benefit of an online group is convenience. Friends and support are only a click away, and I can talk to others at all hours of the day or night. And, I get to talk to people who come from all over the world. With a face to face group, I would probably never meet people from places like the U.K., Australia, South Africa, Canada, and people from all over the US.

    7. Why did you choose to seek support online?

    It was, and still is my only outlet for friendship and support from others who have Lupus.


    Rob

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hey Marla,

    I didn't read anyone else's answers before I wrote down my own answers. It's funny, I just read your answers to question #6, and it is almost word for word the same as my answers to question #6!
    Last edited by rob; 03-12-2010 at 06:41 AM.

  9. #6
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    Talking

    Face it, Rob
    I'm your long-lost big sister!

  10. #7
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    hi harriett,

    1. Affects on social life: I too went from a very very active person who was motivated to keep pushing forward. Now, i have to prioritize, and accept that i can't complete my "to do" list. I was always on the go, and now i weigh the pros and cons. I have to schedule outings around medications, and around the weather....if it is too sunny, i can't be out. If it is too cold, i can't be out....always having to make choices.

    2. my friends and family reactions: My family have all been very sympathetic, and protective. They call and check on me, and always offering their help. My kids (all grown), were devastated and continue to fear the future. My friends are all very supportive, but i watch as they go on with their lives.

    3. No, drs. have not offered any recommendations for social help. All that i ever see, is charts on their walls for how much they charge for helping you complete federal assistance forms.

    4. I did research and find a local support group. I have thought about going to the meetings, but i just have not made myself get out and go.

    5. Certainly, mobility limitations are a daily issue for me, and being a member of an online support group enables me to keep active without having to decide if i will get out in the night air. Also, usually by the evenings, i am pretty much out of energy, and usually choose to stay inside.

    6. well, i know this redundant.....but just take marla's and rob's answers to this question, and paste in my answers. I cherish my worldwide friendships...just amazing.

    7. I chose on-line support because i was scared to death when i was diagnosed, and wanted someone to talk to immediately. This was a way for me to talk about lupus without having to "face" lupus. That is how it started, now, i am not afraid to face lupus or other people.
    Phyllis

    share a smile today

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