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Posted By : Lynnwood - 4/10/2017 12:25 PM
Friends,

Please remember this is a PEER support forum. That means that we ALL contribute thoughts, ideas, and support. So many times I notice that 20-40 or more people have read a post, yet no one makes a comment.

My role as moderator does NOT mean I answer every post, or that I am the only one with support or ideas to offer. Really, it just means I'm supposed to step in if disagreements or ugliness arises between members.

For quite a while I've felt really alone and like I'm the only one here.

Can y'all please step up and comment? Even if you don't have the exact situation, you might have something similar. Share with us what your Drs have told you, what you've read, what you think. Even if you just say, "I read that, that sounds awful", it would be a great help.

Thanks.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Ziggs - 4/10/2017 2:41 PM
I agree, I don't know much about lupus but I do make an effort to answer questions and give support on the ostomy and UC forums. I've always found them to have loads of people reply on there and was surprised to find hardly anybody on here replying despite the number of views.

Posted By : Melissa D. - 4/10/2017 7:51 PM
Lynnwood, you truly do go above and beyond and there are many times you are the only one who responds to my posts, for that I am so grateful! I will do my best going forward to let people know I am there for them and have a least read their post if it is something I no experience with.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : 10bmd10 - 4/11/2017 8:28 AM
Agreed, Lynnwood. While I'm still a newbie and figuring this all out, I'll chime in when I can! Thanks so much for leading this group. It's been very helpful as I figure this all out.
January, 2017 - Doctor is toying between a UCTD and Lupus diagnosis

Plaquenil, 200mg since January 6, 2017

Gluten-free since January 5, 2017 - I don't have celiac, but doctor advised it might help with the lupus/UCTD

Posted By : Lynnwood - 4/11/2017 8:49 AM
Thanks, friends!

I've been here a long time and am starting to get burned out. I appreciate everyone chiming in!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Bsime - 4/11/2017 3:04 PM
Lynnwood,

Sorry but I have been in my own tangle for the past 2 years and not as active here and elsewhere. We have the same problem on the Myositis Assn forum. Only a handful of us really contribute. Many have migrated to FB and like the "chatty, social" nature instead of the more serious forums like this one. Just posted on Melissa's post on liver problem which I have had lots over the years both from lupus and PM. Fortunately my liver is ok and no problems at the moment but lupus really does not like my platelets and also attacked other things lately so I am on 60 mg pred and had 2 IVIG infusions last week. Fun and games but I know these treatments work and hope IVIG will be a longer lasting one or even put lupus back into remission. PM has been there for 12 years so I am happy about that.

I also run a myositis support group for Illinois and we have a difficult time getting folks to attend or help even though when they do they get fantastic support and programs. Just makes me want to say enough since I have been doing it for 11 years. We stopped fund raising because we couldn't get help and I am only committed to supporting individuals now whether they are in our group or not.

Frustrating particularly when you are struggling with your own problems as I have been. Health, death of a son, and dealing with a mentally ill grandson the past 2 years. Overwhelming at times but somehow finding a way to help and still take care of myself. I do find myself saying NO more often as I get older. Selfish maybe but still want to enjoy what is left of my life and still make a difference in the world. Hard to find a balance sometimes.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Butterflake - 4/12/2017 11:31 PM
Hi Lynnwood. You put in lots of time and effort into HW and it's no wonder that after all these years you've become weary. I'm so sorry that I often disappear for a very long periods of time. Unlike Bill and some others when I am sick and life is a struggle interacting with others is often the last thing on my mind.

I've noticed a drop in our posts too and agree with Bill that many have gone to FB. I'm not a FB member, but my daughter occasionally suggests that I join. I hope that your post encourages more folks to respond.

And Bill I'm proud of you for all the things that you do, especially when you have been through so very much. I have known you on HW for years. You are a helpful, sensitive, intelligent man who readily reaches out to those in need. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Bsime - 4/14/2017 1:41 PM
Thank you. It is simply part of my pay back for surviving and being able to live an active and meaningful life again. If those of us who successfully cope (most of the time) don't share then others suffer needlessly.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : NanaBee - 4/14/2017 6:23 PM
Hi Lynnwood, I haven't been on here for awhile but I will make it a priority to check in at least once a day and help. I didn't realize that people weren't posting as much and leaving you with a full load. I am glad you said something to let us know.
MCTD, Fibromyalgia,Pulmonary Hypertension, Pulmonary Stenosis, High Blood Pressure, IBS, Degenerative Disc Disease, Depression, Anxiety

"No matter what happens, God is in control. He is God, I am not, what a relief!"

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