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ATTN: Elizabeth WebMD:
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lupylisa44 posted:
It use to be that people would support each other on this board. It isn't like that anymore. I have gone out of my way to answer most posts and give information and support, but it seems no one is willing to return the favor. People show up get their answers, then just disappear. My last several posts have had no responses. For that reason I am contemplating leaving this board.

Lupylisa
With love, with patience and with faith, we'll make our way.
Reply
 
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lupycakes responded:
Hey Lisa -

Just popped back on here to see your message. I've been gone for many weeks for the very same reason. I've tried to help...tried to answer peoples questions... tried to start conversations .... and the only people who would ever answer me was you and dr. V !

What I also find weird is even the people I answer questions for don't reply! I'm left wondering if they ever saw my answer...

Lets face it, the board will never be what it was. I can't get any of the old ones to come back no matter how many times I ask them to.

If its any consultation, I AM very sorry about all the crap you've been going through with your health and your dogs. I know they mean the world to you!!

For what it's worth, I will always be there to listen to you.

Hugs,

Cakelady
 
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lupylisa44 replied to lupycakes's response:
Thanks Lisa!
With love, with patience and with faith, we'll make our way.
 
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1stLadyDi replied to lupylisa44's response:
Ladies: I'm so sorry to hear you are discouraged due to the lack of responses. I do pray that you, as well as others, continue to stay on. I don't know if you have considered the possibility that while responses may not be as active as they once were, several people are being helped by the information that you post as well as just knowing that there are others out there who are lupus warriors & mentors. I, personally, cannot imagine where I would've been mentally and emotionally if I had not discovered this lupus community; it was my first. I also believe that several people, such as myself, are continuously checking this network, reading posts, and are being kept informed & encouraged. I do understand your position(s), though, as it is equally important as well to know that others care enough to take the time to respond sometimes too. Be blessed.
 
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LupyLoo responded:
It's 4:30 AM and I just joined the lupus community. I'm sorry that people have not responded to your posts and it's discouraging to me when I have so many unanswered questions. I was hoping this would be the place to go to find help and to talk to others who know what i am just beginning to go through. I have an appt with my dr today and have many questions for him as I am in my first flare. No support groups in my area. So far I have learned 99% of my information on lupus online and not from my dr. I'm awake right now as I thought I was having a heart attack at 2:30 but seem to be fine now. Please don't give up because thousands of people like myself need you and your knowledge. I love your saying after your name. It gives me some encouragement.

Hugz
Michele
 
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lupylisa44 replied to LupyLoo's response:
Hi lupyloo and welcome!!!

I would be happy to help you in anyway I can! I will keep coming to this board, as I have been committed to it for over 12 years. I was just venting my frustration about the lack of support from people other than just a few of us. Plus, I have been having a really bad few weeks... I lost two dogs in two weeks which really sent me reeling. My Fibromyalgia is flaring big time and then I get news that my kidneys are not cooperating and continue to get worse. But happy to report that things are looking up!

Last sunday, I picked up a new "baby" she is a german shepard and is the sweetest little dog! She fits in with the rest of the pack very well (I now have 4 dogs) My kidney numbers came down quite a bit and fibro isn't as bad as it was, although it is still hanging around.

I hope your appointment went well, If you need anything, just ask!!!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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tigermom23 replied to lupylisa44's response:
Hi Lisa,

I look to you for advice and strength. I have posted off and on and asked questions that never seem to be answered. My fibromyalgia is flaring pretty bad right now. I have been put back on steroids, lyrica, vistaril, morphine, percocet, soms, plaquenil, imuran, Benlysta IV treatments, and quite a few more. The pain in all my joints is still bad. and having a flare-up with everything right now.

I am sorry for your loss of your puppys which become a part of your family. God bless and love and strengthen you.

Jerri
Thank you, Good luck, and God bless
Jerri
 
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gringa1 responded:
Hi Lisa, Would like to say, I come here off and on and it's you that really helps me with answers. Whoever this Elizabeth girl is, isn't much help or no help at all. I too have been going through a lot with lupus and especially my fibro. I've decided to wean myself of all meds for my fibro, what I decided was was changing my diet, doing acupuncture and go herbal, the only medication I'll continue is hydroxychlor. I already spoke with my rheumatologist, and he agreed to give it a try, first I'm going to wean off the gabapentin, then cymbalta. I'm neverous as hell, but with Gods grace I am going to give it a try-83D-E0C Please don't leave your input is very informative and important to us. I too get frustrated that no one responses to our questions, and for that reason I stay away, shame on me -83D-E20 My heart goes out to you, losing a pet is like losing a family member.

I hope you stick around, God bless you my lupy sista,,
 
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MIBeth replied to gringa1's response:
I, too, am sorry for not posting but this site has been a life saver for me!
I'm having the worst flare ever after 20 years of having Lupus. Joints, heart, rash, lungs, clots....you name it. I have lost all of my hair and the only "fun" I'm having is I get to shop for scarves and wigs! I'm currently on Cytoxan, plaquenil, metho, folic, tramadol, vit D, prednisone. I have osteoperosis so bad that I have to watch the prednisone so in a month I'm going to do a Reclast infusion. The only thing is, this is dangerous with my brittle bones. It's not only the Lupus disease, it's the meds also! I will try to keep my posts going! God bless everyone and will keep everyone in my prayers


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