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angelkiss817
04-23-2009, 03:43 PM
Hi Everybody,
my name is Miranda and in my last post I said that I had a survey for a sociology class project that I was hopeing anyone who was interested would complete. Here it is, and just know that it is completely voluntary, you don't have to answer any questions you do want to and I really appreciate this. Please respond back in whatever way best works for you.


Please fill out the following survey to the best of your ability. All surveys are anonymous and no identification will be used in presenting the results. All questions are voluntary so omit any you are not comfortable answering. Thank you very much for your time.

1) As someone dealing with lupus myself, I know things like medications, doctors, new symptoms, friends and family can sometimes be frustrating. How frustrated have you felt by your lupus this past week? (please check one.)

__ very frustrated
__ somewhat frustrated
__ not frustrated by lupus at this time

2) Which of the following forms of social support do you use to help manage your lupus? (Please check all that apply.)

an in person support group in your area
friends
family
doctors
online support group
sibling
partner
therapist/counselor
other (please specify)
none of the above (if none of the above move to question #4)

3) Which of the following do you feel is the most helpful form of social support for you in managing your lupus? (Please check only one.)

an in person support group in your area
friends
family
doctors
online support group
sibling
partner
therapist/counselor
none of the above
2a) For the item you checked, do you feel it has helped you manage your lupus symptoms in some way?

___ yes ___ no

2b) Please explain how you feel it has helped manage your lupus symptoms.




4) Which of the following do you feel is least helpful managing your lupus? (Please check only one.)
an in person support group in your area
friends
family
doctors
online support group
sibling
partner
therapist/counselor
none of the above

5) Is there a physical lupus support group in your area?
___ yes ___ no
6) Have you ever attended an informational meeting specifically discussing lupus?
___ yes ___ no

5b) How helpful was this information to you?
o Very unhelpful
o Somewhat Unhelpful
o Somewhat Helpful
o Very Helpful
7) Has your doctor ever recommended obtaining social support outside of their care for your lupus?
___ yes ___ no
6b) What did they recommend?


8) How old are you today in years? ____________
9) What is your gender?
o Male
o Female
10) What is your race or ethnic background?
o White, non-hispanic
o Black, non-hispanic
o Hispanic
o Asian or Pacific Islander
o Na´ve American
o Middle Eastern
o Other
_______________ (please specify)
11) Where do you live? __________________
12) How long ago were you diagnosed with lupus? _________________
13) Are you currently in remission or having a flare? ________________

Rastagirl
04-23-2009, 04:40 PM
Hi Miranda...

I'm curious...before I do the survey, what College or University do you attend?

I'll send you a Private Message with my answers shortly.

Thanks,

Lori :cool2:

angelkiss817
04-23-2009, 04:42 PM
Hello,
just to clarify, I attend the University of Nevada, Reno. Feel free to ask any more questions.

mountaindreamer
04-23-2009, 05:10 PM
hi miranda,

is is ok if i just respond to this thread with my answers to your survey?

Rastagirl
04-23-2009, 06:17 PM
Hi Miranda...

I sent you a Private Message with my answers.

Let me know if I mixed up any of the answer #'s....or confused you.

Good luck with your continued studies.

Fondly,

Lori :cool2:

angelkiss817
04-24-2009, 01:40 PM
it is totally okay to respond to this thread with your own answers to the survey, or email it privately, or whatever works best for you. Just thank you so much for participating.

-Miranda-

mountaindreamer
04-26-2009, 02:05 PM
hi miranda,

here are my answers....good luck on your research, any of us who have earned post graduate degrees understand this difficult process.

1. very frustrated
2. friends, family, drs., online support group, partner
3. online support group
3a. yes
3b. helped identify symptoms, helps with communicating with drs.
4. none of the above
5. yes
6. no
7. no
8. 56
9. female
10. white
11. atlanta
12. oct. 2008
13. not in remission

Grime
04-26-2009, 02:59 PM
Here are my answers and comments. I hope I didn't offend anyone.

1) As someone dealing with lupus myself, I know things like medications, doctors, new symptoms, friends and family can sometimes be frustrating. How frustrated have you felt by your lupus this past week? (please check one.)

not frustrated by lupus at this time

2) Which of the following forms of social support do you use to help manage your lupus? (Please check all that apply.)

friends
online support group
partner


3) Which of the following do you feel is the most helpful form of social support for you in managing your lupus? (Please check only one.)

partner

2a) For the item you checked, do you feel it has helped you manage your lupus symptoms in some way? yes

2b) Please explain how you feel it has helped manage your lupus symptoms.

We don't spend much time talking about my Lupus. We talking about thinking that make us happy. I have a special small group of friends, all sailors, and we have fun.

One friend got right in my face, like a coach would, and he said. I aint never going to have cancer. PERIOD and I said I'm kicking Lupus in the Butt. We all feel that the more time you spend worrying about something the worse it get.

I'll give you an example. When my daughter and grandson came down and we went sailing for three days. I stayed covered up like it was dead winter. When we got back I was beat and I mean beat, another thread. I made up my mind that Lupus was not going to control me. So this past week I did the unthinkable. I wore a t shirt no sunscreen or hat to see if I could take charge of my body. I feel great and going to stay feeling great. We had dinner with our sailing friends last night and they commented on how great I look.

I'm not on any meds as VA is taking its time about that. I stopped using the creams for the rashes and now that is clearing up.

For me the only thing that I am going to worry about is the winds being to high to go sailing.

I know that I don't have Lupus nearly as bad as members here do but if I let it it will get that bad and I still have a lot of life left even at my age and going to enjoy it to its fullest.






4) Which of the following do you feel is least helpful managing your lupus? (Please check only one.)

None of the above.

5) Is there a physical lupus support group in your area? no
6) Have you ever attended an informational meeting specifically discussing lupus? no

5b) How helpful was this information to you?

o Somewhat Helpful

7) Has your doctor ever recommended obtaining social support outside of their care for your lupus? no

8) How old are you today in years? 64
9) What is your gender?
o Male

10) What is your race or ethnic background?
o White, non-Hispanic


11) Where do you live? Texas
12) How long ago were you diagnosed with lupus? Feb. 09
13) Are you currently in remission or having a flare? I put it in remission.

KHoguetuc
04-27-2009, 12:06 AM
1) As someone dealing with lupus myself, I know things like medications, doctors, new symptoms, friends and family can sometimes be frustrating. How frustrated have you felt by your lupus this past week? (please check one.)

__XXX very frustrated
__ somewhat frustrated
__ not frustrated by lupus at this time

2) Which of the following forms of social support do you use to help manage your lupus? (Please check all that apply.)

an in person support group in your area
XXfriends
family
doctors
XXonline support group
sibling
partner
therapist/counselor
other (please specify)
none of the above (if none of the above move to question #4)

3) Which of the following do you feel is the most helpful form of social support for you in managing your lupus? (Please check only one.)

an in person support group in your area
friends
family
doctors
XXonline support group
sibling
partner
therapist/counselor
none of the above
2a) For the item you checked, do you feel it has helped you manage your lupus symptoms in some way?

_XX__ yes ___ no

2b) Please explain how you feel it has helped manage your lupus symptoms. It helped me understand better and learn I was not crazy.




4) Which of the following do you feel is least helpful managing your lupus? (Please check only one.)
an in person support group in your area
friends
family
XXdoctors
online support group
sibling
partner
therapist/counselor
none of the above

5) Is there a physical lupus support group in your area?
_XX__ yes ___ no
6) Have you ever attended an informational meeting specifically discussing lupus?
___ yes _XX__ no

5b) How helpful was this information to you?
o Very unhelpful
o Somewhat Unhelpful
o Somewhat Helpful
o Very Helpful
7) Has your doctor ever recommended obtaining social support outside of their care for your lupus?
___ yes _XX__ no
6b) What did they recommend?


8) How old are you today in years? ______41______
9) What is your gender?
o Male
oXX Female
10) What is your race or ethnic background?
oXX White, non-hispanic
o Black, non-hispanic
o Hispanic
o Asian or Pacific Islander
o Na´ve American
o Middle Eastern
o Other
_______________ (please specify)
11) Where do you live? _________AZ USA_________
12) How long ago were you diagnosed with lupus? ____Not officially yet but on some of the meds___________
13) Are you currently in remission or having a flare? ________In full flare mode________[/QUOTE]

dmott
04-27-2009, 08:12 AM
Here are my answers to the survey:

Please fill out the following survey to the best of your ability. All surveys are anonymous and no identification will be used in presenting the results. All questions are voluntary so omit any you are not comfortable answering. Thank you very much for your time.

1) As someone dealing with lupus myself, I know things like medications, doctors, new symptoms, friends and family can sometimes be frustrating. How frustrated have you felt by your lupus this past week? (please check one.)

_x_ very frustrated
__ somewhat frustrated
__ not frustrated by lupus at this time

2) Which of the following forms of social support do you use to help manage your lupus? (Please check all that apply.)

an in person support group in your area
friends
family X
doctors
online support group X
sibling
partner
therapist/counselor
other (please specify)
none of the above (if none of the above move to question #4)

3) Which of the following do you feel is the most helpful form of social support for you in managing your lupus? (Please check only one.)

an in person support group in your area
friends
family
doctors
online support group X
sibling
partner
therapist/counselor
none of the above
2a) For the item you checked, do you feel it has helped you manage your lupus symptoms in some way?

_X__ yes ___ no

2b) Please explain how you feel it has helped manage your lupus symptoms.

The online support is great because everyone knows how you feel!


4) Which of the following do you feel is least helpful managing your lupus? (Please check only one.)
an in person support group in your area
friends
family x
doctors
online support group
sibling
partner
therapist/counselor
none of the above

5) Is there a physical lupus support group in your area?
__x_ yes ___ no
6) Have you ever attended an informational meeting specifically discussing lupus?
__x_ yes ___ no

5b) How helpful was this information to you?
o Very unhelpful
o Somewhat Unhelpful x
o Somewhat Helpful
o Very Helpful
7) Has your doctor ever recommended obtaining social support outside of their care for your lupus?
___ yes __x_ no
6b) What did they recommend?


8) How old are you today in years? _____42_______
9) What is your gender?
o Male
o Female x
10) What is your race or ethnic background?
o White, non-hispanic x
o Black, non-hispanic
o Hispanic
o Asian or Pacific Islander
o Na´ve American
o Middle Eastern
o Other
_______________ (please specify)
11) Where do you live? ___Texas _______________
12) How long ago were you diagnosed with lupus? _________1997________
13) Are you currently in remission or having a flare? __having a flare:hissyfit:

noelg
04-27-2009, 08:55 AM
1) As someone dealing with lupus myself, I know things like medications, doctors, new symptoms, friends and family can sometimes be frustrating. How frustrated have you felt by your lupus this past week? (please check one.)

_x_ very frustrated
__ somewhat frustrated
__ not frustrated by lupus at this time

2) Which of the following forms of social support do you use to help manage your lupus? (Please check all that apply.)

an in person support group in your area
friends
family
doctors
online support group x
sibling
partner
therapist/counselor
other (please specify)
none of the above (if none of the above move to question #4)

3) Which of the following do you feel is the most helpful form of social support for you in managing your lupus? (Please check only one.)

an in person support group in your area
friends
family
doctors
online support group x
sibling
partner
therapist/counselor
none of the above
2a) For the item you checked, do you feel it has helped you manage your lupus symptoms in some way?

__x_ yes ___ no

2b) Please explain how you feel it has helped manage your lupus symptoms.

the on-line support group members are in the same predicament and have varying levels of understanding; but ALL understand at some level! They ALL have empathy and can relate. They ALL talk to you and do not avoid your attempts to voice your feelings!


4) Which of the following do you feel is least helpful managing your lupus? (Please check only one.)
an in person support group in your area
friends
family
doctors x
online support group
sibling
partner
therapist/counselor
none of the above

5) Is there a physical lupus support group in your area?
___ yes __x_ no
6) Have you ever attended an informational meeting specifically discussing lupus?
___ yes _x__ no

5b) How helpful was this information to you?
x Very unhelpful
o Somewhat Unhelpful
o Somewhat Helpful
o Very Helpful
7) Has your doctor ever recommended obtaining social support outside of their care for your lupus?
_x__ yes ___ no
6b) What did they recommend?

Canadian Lupus Society

8) How old are you today in years? _______57_____
9) What is your gender?
o Male
xFemale
10) What is your race or ethnic background?
x White, non-hispanic
o Black, non-hispanic
o Hispanic
o Asian or Pacific Islander
o Na´ve American
o Middle Eastern
o Other
_______________ (please specify)
11) Where do you live? _______Canada___________
12) How long ago were you diagnosed with lupus? ____10 years___________
13) Are you currently in remission or having a flare? _____flare________

Ria0331
04-28-2009, 10:10 PM
Hi Marianda here are my answers to your survey. Hope it helps

1) As someone dealing with lupus myself, I know things like medications, doctors, new symptoms, friends and family can sometimes be frustrating. How frustrated have you felt by your lupus this past week? (please check one.)

x very frustrated
__ somewhat frustrated
__ not frustrated by lupus at this time

2) Which of the following forms of social support do you use to help manage your lupus? (Please check all that apply.)

an in person support group in your area
friends x
family x
doctors
online support group x
sibling
partner (Husband)
therapist/counselor
other (please specify)
none of the above (if none of the above move to question #4)

3) Which of the following do you feel is the most helpful form of social support for you in managing your lupus? (Please check only one.)

an in person support group in your area
friends
family
doctors
online support group x
sibling
partner
therapist/counselor
none of the above
2a) For the item you checked, do you feel it has helped you manage your lupus symptoms in some way?

___ yes x no

2b) Please explain how you feel it has helped manage your lupus symptoms.




4) Which of the following do you feel is least helpful managing your lupus? (Please check only one.)
an in person support group in your area
friends x
family
doctors
online support group
sibling
partner
therapist/counselor
none of the above

5) Is there a physical lupus support group in your area?
___ yes _x__ no
6) Have you ever attended an informational meeting specifically discussing lupus?
___ yes _x__ no

5b) How helpful was this information to you?
o Very unhelpful
o Somewhat Unhelpful
o Somewhat Helpful
o Very Helpful
7) Has your doctor ever recommended obtaining social support outside of their care for your lupus?
___ yes __x_ no
6b) What did they recommend?


8) How old are you today in years? _____27______
9) What is your gender?
o Male
o Female x
10) What is your race or ethnic background?
o White, non-hispanic x
o Black, non-hispanic
o Hispanic
o Asian or Pacific Islander
o Na´ve American
o Middle Eastern
o Other
_______________ (please specify)
11) Where do you live? ______Crossville, TN____________
12) How long ago were you diagnosed with lupus? ______Aug 08___________
13) Are you currently in remission or having a flare? ___Neighter_____________

gina
04-29-2009, 05:20 AM
1. somewhat frustrated
2. online support group, partner
3. online support
2a. yes
2b. they have it and understand more whats going on with your body and mind. you can vent openly
4. none above
5. no
6. no
7. no
8. 41
9. female
10. us. md
12. 3years
13. depends what you call a flare if feel as if something is always going on but not bed ridden like before with worse flares i have had.

hope this helps.