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Saysusie
09-10-2006, 10:18 AM
Dear Members;
I received a request from a Cindy Mendelson, PhD, RN, Assistant Professor
College of Nursing, University of New Mexico stating that she was conducting a study on mothers with Lupus. She asked if she could put her request on this forum.
I am generally against this type of request on this forum because I do not know how legitimate these people are or what they intend to do with the information. But, this time, I thought that I would ask you, as members, if you wanted me to or if you prefer not to start getting involved in that type of thing here.
Let me know what you think.

Peace and Blessings
Saysusie

TracyDawn
09-11-2006, 04:47 AM
Well I certainly don't want any scammers asking for my info BUT maybe if we did do it, it would bring more awareness to the issue? There are lot of mothers with lupus and it's HARD. Not that it isn't hard without kids but since I have one I wouldn't know. So I guess if it's legit, either way I'd be fine with it??

stjames13
09-11-2006, 05:07 AM
:wink:
SUZ you know best and if someone does NOT want to answer the questions they have that right.......it's up to you as only you know what this DR is looking for.

ME personally I TRUST in YOUR JUDGEMENT. :wink:

STJAMES :wink:

browneyedgirl53
09-11-2006, 08:34 PM
Hi Saysusie,

I am from Albuquerque, New Mexico. Cindy Mendelson is known for her research work with lupus, scleroderma and does a lot of research work regarding women in the health workplace. I believe she is the one who conducted a pilot study at the University of New Mexico College of Nursing by the name of "Living with the Wolf". I believe it started in 2000 and she is currently working on that particular grant through next year.

I don't know if it is appropriate to share this, but there is a great faculty profile about her at the following website. I have several friends who graduated from the UNM and they have an excellent nursing program.

More info on her is at: http://hsc.unm.edu/consg/faculty/mendelson,cindy. shtml

Much love,
Browneyedgirl

p.s. I would be willing to participate in the survey, and perhaps others would be also if they were able to read her CV (Bio). She does ALOT of research with women and lupus. I think it would be helpful....if she has information that she would be willing to share with us; I think our "family" here would feel better about participating. Thanks for asking - it will be interesting to see what responses you get. BEST OF LUCK.

p.s.s. - well, we have been talking about HOW TO GET THE WORD OUT, this definetly is a person who carries some weight and knowledge. Have you had a chance to talk to her on the phone? What's your feel?

NOW, I'm done :) :)

ButterflyRN
09-12-2006, 05:27 AM
I trust your judgement saysusie! :D

Morpheus
09-12-2006, 07:12 AM
If the survey will do us any good in rising awareness, then i'm all for it.

peach224
09-12-2006, 08:00 AM
I also trust your judgement Saysusie and it looks like this particular individual comes highly recommended. I also say that as a mother truly struggling with Lupus right now, I would be more than willing to share my thoughts.

- Peach

Saysusie
09-12-2006, 01:22 PM
I've written to her and told her that she could post her request here on this forum. She is the first person who has asked that I even felt comfortable enough with presenting it to you.
Thanks for all of your responses!!

Peace and Blessings
Saysusie

admin
09-12-2006, 02:31 PM
This is the first time we've ever cooperated with an outside source, so if anything seems "iffy" at any point, please let us know.

You can imagine we are very hesitant, as we don't want to lead anyone on a misdirected path.

JenHa55
09-12-2006, 03:12 PM
I understand the hesitation but personally, the more these doctors learn about Lupus and the finer points of the disease and how it affects us personally, I actually think it's better for all of us in the long run.

If you can verify the validity of the survey or study and you feel it to be worthy, I feel it's actually a good thing and people can answer or not. I certainly wouldn't be handing out e-mail addresses but I wouldn't be hesitant to make a thred.

That's just me. I want them to learn about it all and the faster the better for all of us!!!

Jen

stardust
09-12-2006, 04:33 PM
I THINK I read an article about some work of hers a few months back in the "Lupus Today" magazine. If it IS the same person; I was REALLY impressed with the article. It was about how much more awareness needs to be gathered for lupus women.

She sounded really dedicated for the cause.
BUT; I'm not positive it was her, I'll try to look back and see for sure who wrote the article, I keep the magazines.

Saysusie
09-13-2006, 07:30 AM
She has posted her request and it is satisfactory to me. However, as Conrad has said, if you feel any discomfort at all, please let us know immediately!

Good Luck To Those Of You Who Choose To Participate!!

Peace and Blessings
Saysusie

stjames13
09-14-2006, 05:49 AM
SUZ,
Where is the post as I would like to participate in the survey and give her a MALES point of view.

BTW...HOW ARE YOU?????

Just wanted to THANK YOU for the BIRTHDAY wishes and prayers with the MS.....
I am doing fairly well....my therapist told me that it's just another diagnosis and the myriad of diagnosis's that you have, haven;t stopped you from living your life....so continue on and you will survive.....it's inside you....you're a survivor.

IMHO I suggest all of us have a therapist who can sometimes put thing in order for us as this can make life very confusing and stressfull.

I hope you;re well SUZ.......love ya (HUG)

STJAMES :wink:

TracyDawn
09-14-2006, 07:39 AM
I did the survey. It was very simple questions and took me about 10 mins, tho they said it might take up to 45. I liked that it gave you a place at the end to insert your thoughts about how Lupus has affected your life.

Saysusie
09-14-2006, 02:08 PM
St. James :lol:
I am doing fairly well. Have a bit of a flare right now, but I am not letting it get me down or keep me down. The fatigue and burning, sore muscles, sleepless nights and daily migraines are starting to get to me. So, I am packing up my books, my hat, my sunglasses, my blanket, and heading up to the Mountains (Lake Arrowhead) to spend the day under lovely trees, breathing cool air and just allowing myself to be taken over by nature!! That usually always makes me feel so much better.
It is getting close to my daughter's birthday and so I know that I will be in need of my therapist to get me through this!! I truly believe that , for us, having a counselor, therapist or a psychiatrist is just as important as having a rheumatologist!!

ANYWAY>>> The post regarding the survey is here in Lauri's Loung and is titled "Research Study For Mothers With Lupus" and was posted by CindyM.
She gives you information on how to contact her in order to participate in the survey!!

Thank you for asking about me..You are truly a friend and an angel :angel:

Peace and Blessings
Saysusie

ButterflyRN
09-14-2006, 04:42 PM
Saysusie sorry to hear that you are dealing with a flare right now. I hope you start to feel better soon and have a wonderful trip! :D

stjames13
09-15-2006, 05:43 AM
8)
SUZ.....

You enjoy yourself on that retreat and relax....and when that "LADYBUG" crawls up your arm you'll now it's ok to go home as all is well.

Maybe take the LADYBUG with you and put her in your garden !!!!!!

LOVE YA and be easy on yourself !!!!!!

I'll hold down the fort, you take care of that flare up and your mind......

LOVE YA and tell "LADYBUG" HAPPY BIRTHDAY FROM ME !!!!!!!!!!

HUGS AND KISSES

STJAMES :wink: :lol:

Saysusie
09-15-2006, 08:33 AM
Thank You So Much St. James and ButterflyRN. It feels so nice to know that people truly wish you well!!
I am all packed, my hubby is all jazzed and we are "ret ta go!!" :lol:
I am so sure that "Ladybug" has heard your birthday wishes and is so very pleased. I will sing to her all weekend and that will make me happy!!!

See You All On Monday... :smilecolros:
Saysusie