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Thread: New to site and wondering if anyone else this sick

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    Default New to site and wondering if anyone else this sick

    Hello, my name is Jeanette, and this is my story. I was told I may have Lupus when I was pregnant 17 years ago because I had a false-positive syphilis test. I blew it off because they said not to worry about it. True to Lupus my daughter was born very premature. Over the years I became very sick and ached all over like crazy. I brought up the possible Lupus Diagnosis about the 3rd time on seeing Doctors for it and they pretty much blew that off. However 1 Doctor did do some tests, and said I didn't have enough wrong for a diagnosis. By the time I was 33 I was in such bad shape, I was positive I had it, went to see a specialist, and of course was then diagnosed with not only SLE, but over the years a host of secondary Autoimmune Diseases. I will name just a few: Hypothyroidism, Antiphospholipid Antibody/Syndrome, Raynauds, Fibromyalgia, Sjogrens, Autoimmune Hemolytic Syndrome, Chronic Dehydration(which I have to transfuse a bag of saline with extra potassium and vitamins in daily through a Hickman, along with a constant running CAD pump with Dilaudid in for pain) Myopathy, neuropathy, COPD, Myositis, CNS Involvement, and I left out 9 others. I have to take Blood thinners due to a Portal Vein Thrombosis that I almost died from. I was on a vent last year because I bled out due to my INR being 15. I wish so badly that I knew I had it all along, so I could have enjoyed my remission periods!! Is there anyone on this sight who can no longer walk more than a few steps without being in a wheelchair, or who is sick everyday of their life, just has better days of "being sick" than others? I can't find anyone like myself to talk to, and am becoming depressed because of it. I have a "great" support system, but would love to find someone who "really" understands what its like to be sick everyday? To have to fight with themselves wether or not to sign that DNR form? I have been in Hospice and graduated. I look forward to this new drug being released, but so struggle every day. So, Just wondering, is there anyone out there just like me???

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    hi jeannette,welcome to a family where you can share stories of common daily struggles with lupus. you will find so many people here who have various experiences with the drs., with family and friends, with daily lives, and with this beastly disease. you have really faced so many devastating and frightening results of life with lupus, and i hope that things will level out for you and hopefully that you will enjoy some time of remission.Your question about walking....i have not had to start using a wheelchair yet, but i struggle with walking for very long. When i go to the grocery store, i use the cart to help me walk....i use a cane when my pain is bad, and when necessary, i will use the motorized cars at the stores for shopping. I know of a couple of members who recently had to start using wheelchairs, and i hope they will be along to talk with you about this.thank you for your question about DNR. I struggled for a long time about exactly how to complete this form. I finally did sign it, but i continue to have questions. My children are grown, so i don't have the concerns about the care of young children, but, it is still a very difficult decision. There is a part of me that wants them to just let me go with no efforts to revive, but I have never been a quitter, and it is difficult for me to give up. However, the overwhelming destruction of lupus makes me question the value of my life.....it is sad, but this is a reality decision that we must make.Please excuse the format of this post....i am having trouble with my abiblity to post on the forum, and (for some reason), my new paragraph commands are not working....all of my sentences are just running together.
    Phyllis

    share a smile today

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    Quote Originally Posted by JHJISSICK View Post
    Is there anyone on this sight who can no longer walk more than a few steps without being in a wheelchair, or who is sick everyday of their life, just has better days of "being sick" than others? I can't find anyone like myself to talk to, and am becoming depressed because of it. I have a "great" support system, but would love to find someone who "really" understands what its like to be sick everyday? To have to fight with themselves wether or not to sign that DNR form? I have been in Hospice and graduated. I look forward to this new drug being released, but so struggle every day. So, Just wondering, is there anyone out there just like me???
    Dear Jeanette,

    You and I do have some things in common, I think. And I'm so sorry to hear what you've been going through!

    I'm brand new to this site. I guess this is my introduction!

    I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Sjogren's Syndrome, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia.

    I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job. But I don't know how long I can keep it up! I'm so stressed out right now I don't know what to do anymore! I too need to find someone who understands what it's like to have SO MANY %$#&@* autoimmune diseases that you feel like a freak who should be in a medical research study!

    I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

    Two of my aunts died from complications of lupus. One of my adult daughters has lupus too.

    Now I think I have lupus, and it scares me....

    JoAnn

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    Hi Jeanette,

    Ive posted on the other thread as i missed this one,sorry.Hope you feel better knowing when you log in you are not alone and members can identify with you,in some way.I hope you know we all care.Catch up with you soon.

    love Amandaxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by nasalady View Post
    Dear Jeanette,

    You and I do have some things in common, I think. And I'm so sorry to hear what you've been going through!

    I'm brand new to this site. I guess this is my introduction!

    I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Sjogren's Syndrome, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia.

    I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job. But I don't know how long I can keep it up! I'm so stressed out right now I don't know what to do anymore! I too need to find someone who understands what it's like to have SO MANY %$#&@* autoimmune diseases that you feel like a freak who should be in a medical research study!

    I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

    Two of my aunts died from complications of lupus. One of my adult daughters has lupus too.

    Now I think I have lupus, and it scares me....

    JoAnn
    Welcome to our group JoAnn! I'm curious about what you do for NASA. I'm a pilot, and I've been facinated by everything NASA since my father took me to the Smithsonian when I was a kid.

    Sorry to hear about all the problems you are having. I have been dealing with SLE since I was diagnosed in 04. I was diagnosed last year with MS as well. Many of us here have overlapping autoimmune disorders. Anyway, welcome to our group!

    Rob
    Last edited by rob; 09-20-2009 at 08:47 AM.

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    Quote Originally Posted by rob View Post
    Welcome to our group JoAnn! I'm curious about what you do for NASA. I'm a pilot, and I've been facinated by everything NASA since my father took me to the Smithsonian when I was a kid.
    Hi Rob, thanks for the welcome...I support a NASA mission called the Spitzer Space Telescope. I do love my work, but it's so hard to keep going with the pain, fatigue, vertigo, brain fog, etc. Fortunately they let me telecommute part of the time.

    I also teach math part time at a local community college.

    Quote Originally Posted by rob View Post
    Sorry to hear about all the problems you are having. I have been dealing with SLE since I was diagnosed in 04. I was diagnosed last year with MS last year. Many of us here have overlapping autoimmune disorders. Anyway, welcome to our group!
    SLE and MS....a very nasty pair of AI diseases! I'm so sorry to hear about your diagnoses.

    Yes, it's very common to have more than one AI disorder; if you have one, you're far more likely to develop another.

    P.S. Sorry Jeanette, I didn't mean to hijack your thread!

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by JHJISSICK View Post
    Hello, my name is Jeanette, and this is my story.
    Hi Jeanette,

    I responded to your other thread, and said hello on your profile page. Welcome to our group!

    Rob

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    Our days..sick, sicker and sickest...I get ya..

    I have SLE, Sjogrens, Fibromyalgia, GERD and a few miscellaneous items in my cart.

    Though I'm not identical to you, our trials and tribulations will differ...many times I would rather be in the dirt but I also find hope and crawl out from underneath the rubble pile.

    I experienced a wonderful day yesterday..energy soared through my body and mind. My eyes filled with joy, I was filled with elation..I swell with tears...wow I feel sick...not sicker, not sickest...it was a wonderful feeling. I wondered how long it would last. So, I shook those thoughts out of my head and said enjoy your 'sick' day...I did...

    It was fleeting..I woke up this morning and I feel like a turd. Sicker...though not my sickest. Humm...disappointed. That day gave me more hope...once again I remember what it felt like to feel almost good...and girl, I have hope I will have another...maybe tomorrow..

    I was on Imuran..now I am on MTX..maybe I am finding my right drug combo...have you tried other drugs in the immunosuppressant family....what are your current drugs?

    Welcome with a warm tight hugs..
    Keep looking for your wellness, Jeannette...I am.

    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by nasalady View Post
    Hi Rob, thanks for the welcome...I support a NASA mission called the Spitzer Space Telescope. I do love my work, but it's so hard to keep going with the pain, fatigue, vertigo, brain fog, etc. Fortunately they let me telecommute part of the time.

    I also teach math part time at a local community college.



    SLE and MS....a very nasty pair of AI diseases! I'm so sorry to hear about your diagnoses.

    Yes, it's very common to have more than one AI disorder; if you have one, you're far more likely to develop another.

    P.S. Sorry Jeanette, I didn't mean to hijack your thread!
    Yes, I have two of the worst A.I.'s there are. I find that dealing with two diseases is not much different than dealing with one. It's funny, The MS diagnosis was not nearly as shocking and scary as the Lupus diagnosis. I guess you learn to accept things.

    On a different subject, I've been building models for a couple of local museums, including a model of the Shuttle Discovery. If you go to my profile page and click on my "Toy Room" photo album on the right side of the page, you can see a couple of pictures of it.

    Rob

    P.S. I'll have to read up on the Spitzer Space Telescope as I'm not familiar with it.
    Last edited by rob; 09-20-2009 at 09:11 AM.

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    Hi, I'm sorry to hear about all you need to deal with, I have SLE also sjgorne syndrome,fibromyalgia,low thyroid,depression,anxiety. Right now im takin Plaquenil, 3 meds 4 my depresion ans 1 for sleeping that sometimes dosen't work,I understand how you feel I'm been so tired and achie or witout strenght that I'm not able to go no were .Or simple I dont feel like going nowere spend weeks at my room very depressed,every day is diferent so I never know how I'm gona feel,stiil trying to get Social Security been denied 3 times because "i'm to young" right now im 47 almost 48,have 4 kids,but never feel so miserable.Plus I get food stamps and now I don't qualify for medicaid,so now I dont have no insurance,I survive with an income of $402.00 monthly from my son hes 18 wenever he finished high school benefits are gone.So is a fight every day,I have hopes Believe what the Bible promise and I'm waiting for that,is the only thing that hold me from killing my self.well you can contact me any time we can share our pain and strugles,with Love maria

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