Autoimune Diseases

Comment

Comment by A. James Hillelson (Jim) 26 minutes ago

Hello All! First of all, I hope we can generate more activity here. There are so many of us with autoimmune diseases and I know how important receiving the support and comfort of friendships mean to us all.

I also hope that I may receive some ideas and/or support for the following: (thanking you in advance for your comments, please)

Along with Systemic Lupus, I have Osteoarthritis and Rheumatoid Arthritis. The R/A is unmanaged and we have tried many treatments. My Rheumatologist is quite concerned, but no more than I am. It is to the point that bathing, dressing, doing housework, laundry, driving, etc., is becoming more and more difficult to achieve. Only through a strong will and determination do I get anything done. Of course, my faith keeps me placing one foot before the other.

Anyway, I was to begin Remicaid to retard the RA and possible Lupus last month, yet it's been one delay after another. Now, I discover that my private insurance will pay for everything except $150 for each infusion that I need to pay upfront. I was given hope that I would receive assistance through a state program, but it is a rebate program. So, the challenge remains that I cannot arrive with $150 for each infusion. I'm on disability and although, I receive more than most after a 30yr career, I still cannot come up with the necessary money to even begin the Remicaid.

What I am hoping is that someone has been challenged in the same way and will have an idea or two that may lead me to the answers that I need, so that I can stop this devistating disease process. I live alone and also cannot afford to gain in-home care... again, an out of pocket expense for me. I am not eligible for Medicaid as I am just slightly over the financial eligibility requirments.

Are there answers or do those of us in the same situation continue to become more and more inable to care for ourselves, independently? There has to be an answer!

Bless You and Merry Christmas (Happy Holidays) to you!

Comment by A. James Hillelson (Jim) on November 6, 2009 at 9:30pm

Thanks for the welcome, Barbara. I'm pleased to be here. I look forward to 'meeting' others, learning and sharing in whatever way I am led to do.

Rest Well and have a wonder-filled weekend!

Comment by Barbara Engle on October 30, 2009 at 9:57am

Welcome A James.. Glad you are here with us

Comment by A. James Hillelson (Jim) on October 30, 2009 at 8:40am

Hello All! I am new to Wego Health, although I am involved actively in two other health related ning groups. I have Systemic Lupus, moderate to severe osteoarthritis that is more and more looking like the Rheumatoid type, although the blood tests do not support this to date. Not uncommon, I understand. I also have neuropathy in my arms, legs and feet that is pretty well managed with Neurotin. I have severe back problems that began with scoleosis (sp?) that was diagnosed in my youth. The arthritis has greatly affected my spine as well as Degenerative Joint Disease, PTSD and associated generalized depression that escalates from time to time. Then, I was recently diagnosed with sleep apnea.

The lupus and arthritis is not well managed at this point. We keep trying! My Rheumatologist wants to start me on Remicade. I am interested in knowing if anyone has experience with Remicade to share their results.

I look forward to getting know each one of you in mutual support and in 'getting the word out' to improve the awareness of Chronic Illnesses/Chronic Pain.

Be Blessed!

Comment by Jenn on October 23, 2009 at 7:45pm

Hi everyone! I have tested positive for autoimmune disease but all we know so far is that I do not have lupus or HIV. <6 months and thats as far as we've gotten'> Other than chronic fatigue and goiter I am not showing symptoms. I am still in the process of receiving diagnosis.

I also have generalized dystonia also and am being treated for those symptoms.

Comment by 68beetle on August 20, 2009 at 10:48pm

Hello All! New here.....I have Lupus. (SLE)

Comment by chyvonneb on August 12, 2009 at 2:46pm

The more the merrier!

Comment by Barbara Engle on August 10, 2009 at 6:20pm

I have been having and interesting disscusion of at inspire. I invited the ladies to come join us here. Hope you don't mind!

Big Hug Barbara

Comment by Sheridragonfly on July 31, 2009 at 7:41pm

I forgot to mention I have segmental dystonia too...
and had endometrosis...endometrosis is linked to autoimmune
disease..learned that years after I had been diagnosed with endometrosis.
I also had encephalitis as a child..

Comment by Sheridragonfly on July 31, 2009 at 7:40pm

I have fibromyalgia and CFs along with multiple chemical sensitivity illness or
enviromental illness.
Twenty years ago I woudl have thought that MCS or E.I. was sci -fi
and not real..Well it is and it is horrible to try to live each day with it
in a toxic world..Sheri

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