Topic of the discussion
Posted on 4/7/19 2:20 AM
Hey y'all, I have had Lupus since the late 1980's. I was diagnosed in 1992, in a hospital after suffering heart and lung problems. I remember they had a Lupus support group in the hospital. I moved away and have not been able to find any actual groups where people meet! I feel alienated as I don't know anyone else with Lupus so when I'm having a bad day or I just need to know if I'm going crazy or if this is something we go through. It has been such a long road. I have gotten in touch with the Lupus foundation and they are only in a few places in my state. I'm puzzled as to why there are not more support groups for us. Maybe I am just not looking in the right places, but jeez I don't think it should be this hard.
Has anyone else had this problem? I joined this site so that I could have others to share with.
Let's use this discussion as a place to discuss why we need support and use it to support each other.
Beginning of the discussion - 4/8/19Looking for support - find it here in this discussion https://www.carenity.us/forum/lupus/living-with-lupus/looking-for-support-find-it-here-in-this-discussion-889
Posted on 4/8/19 12:20 AM
I use Carenity as a support group and a place I can go to just talk to others and at times help others or get advice from others. It is pretty nice site and group. You will get a reply usually the same day from someone, which is nice.
However, in terms of support groups, I am a member of a support group that meets twice a month at my local church... it is a group for those in chronic pain, but it is really a group for those that are dealing with pain or chronic conditions (with or without pain). I would recommend resourcing support groups similar to that. Even if you are not religous... we have members in the group that were not religous when they joined - they just joined the group and really were not a member or attend church services. Most them now do, however.
I never was able to find a dedicated group to lupus that met in person however.
What city are you in? Maybe I can help search.
Posted on 4/8/19 10:25 PM
Hey Lupus 38, thank you for your response. I live in Chipley FL. A very rual area by Panama City FL. I had originally thought about maybe starting a local group but am not well enough to do so which is why I'm so glad I found this site.
I really appreciate your response sometimes it takes everything I have to just make it thru the day and today is one of those days. But, it will be okay. Thank you again for your response and I hope we can talk again. I don't have any friends on here so maybe we can forge a new friendship!
Where are you located?
Have a blessed and favored day. 🤗
Posted on 4/10/19 9:05 AM
hi i am jo love, i have lupus since 1999. i have been put threw hell like everyone else.it will nice to have someone to talk to. I normally don't stay up this late,but can't sleep tonight. I live in Biloxi,Ms. I am 57years old. My question to you or anybody else is have any of you had i treatment called Rituximab I.V. infusion. they call it chemo for lupus. I have had 3 treatments.I have not noticed much differt except it made me sick. i have so much to read on this app. I haven't really talk to anyone who has lupus. thanks for reading part of my story, hope to talk to you soon.
Posted on 4/13/19 5:42 PM
Hey Jo, it's nice to meet you. I wish it was under different circumstances but hey, what are you gonna do. I'm sorry I don't have experience with your IV Infusion therapy. I was really hoping that someone else on here would have responded. I have heard of it, but have never met anyone on it. I used to work in the medical field and was working at the time when it came out. I had heard that the trials were very successful but have always wondered about it's long term effects. I have put so many drugs into my body over the last 30 something years that at my age, 59, I've decided to make different choices. I think I have relied on the best educated guess for long enough. How and what does this drug do for you? Has and is it improving your quality of life? How is your emotional welfare in all this?
Jo, Good bless you and I hope we talk again soon and good luck with your therapy.
Posted on 4/17/19 1:44 PM
I use CeraVe white bottle with red writing helps greatly with the itching.
Posted on 4/17/19 6:46 PM
Thank you I will see if I can find some
Posted on 4/19/19 2:22 PM
Look at CVS or Walgreens
Posted on 4/21/19 2:03 AM
Hey Jo I hope you have been doing well. I am glad to see that you were able to get some good advice on here.
I have been having internet issues so have not been able to answer some of your questions but I'm hoping the weather holds out and I can get some emails out.
If you celebrate Easter I hope you have a very blessed and favored day.
Posted on 4/27/19 5:55 AM
@Hidden username Hey sorry haven't been on line. I haven't been feeling well. the I.V. treatment really has not made a differerent to me. I have decided to go back to the methadone clinic it is when i really felt the best the drs. around will not write anything because of the new laws. hell i didn't abuse the meds. its these young kids who are over doseing not us old folks. I just want to feel better don't we all. how are you doing. talk to you soon Jo Love