Autoimmune and other things - question about priorities.

Discussion in 'Chit Chat' started by kellygirl, Sep 1, 2009.

  1. kellygirl

    kellygirl Member

    If you read my past posts from 2/08, I had knee surgery for a workman comp issue. Right after, I had the flu twice and bronchitis during my recovery. (I was working home health as an aide) I never use to get sick.

    I never had the extreme upper-body pain. In my neck, but functioning. I even went back to school p/t and finished.

    Since the surgery, I have extreme pain in the neck, between the ribs, arms, overall pain. I have bursitis and cannot raise my arms above my head. PT made it worse and now they want over $300 besides the insurance.

    I finally went to the doctor and he said he does believe something was triggered, he tested for lupus (please, God, no), RA and I don't know what else.

    I didn't go because I didn't think he would take me seriously, but he told me my past tests were borderline before the surgery.

    It will be a week before the test results. Thankfully, I am a fast typist because with pain and fatigue, I cannot write anymore.

    BTW, I do have my ssd started but I called my attorney for the status of my case and he never returned my call.

    Another issue and tell me if my priorities are straight...I found a job that will call me when needed to sit with a bath-tub display and talk to people all day. I can handle this and enjoy the other vendors, too.

    But, I have been babysitting my 3 month old grandson and my daughter cannot find anyone at the last minute and on thursdays when I was asked to work. She offered to pay me a little $$$$ to help out. She can't afford too much.

    I figure family first and with Faith, it all works out. I love this child and love the bond I have with him.

    I said no to Thursdays and work on weekends when I can...How do you all feel about that? I gave up an 11 hour day on Thursdays. I wanted this day to come up, the person that had it has a bad back and could not do it anymore.

    What would you have done....? thanks.
  2. SnooZQ

    SnooZQ New Member

    Kelly, I hope your test results come back OK.

    But even if the test results do show some autoimmune activity, remember that there is a wide range of disease severity for autoimmune disease. Many forms are relatively mild in the sense that the internal organs are not harmed. That is true for RA, Lupus, MCTD, Sjogren's -- some people get it severely, some a moderate form, others a milder form.

    I've lived over 5 decades (since age 3 yrs) with autoimmune disease. My diagnoses have been multiple, but the form I have is mild in the sense that my major internal organs function well and have not been harmed. I've had a number of flares of more serious disease over the years, usually triggered by a combination of stress and infection or vaccination.

    This pattern, I've been told by docs, is not uncommon with AI disease -- to have flares triggered by infection. With rest (& treatment of the underlying infection, if necessary) and patience, things can turn around -- even blood test results can improve.

    With regards to your work, both paid & unpaid, if you do have AI disease, try to keep a balance in your life. It's good to be active if possible, but very important to get adequate rest, esp. if in a flare or trying to recover from a flare.

    I would recommend that you ask your doc to run a complete thyroid panel if that has not recently been done. Recent research has shown that in Lupus patients, there is frequently a mild degree of thyroid impairment which, when treated, can reduce pain and help increase functionality.

    Most docs go by a single test thyroid-related screening test called TSH. However, the tests that give the clearest picture of thyroid function are those which show the actual levels of free (not bound) thyroid hormone, as well as the tests that show whether or not there is an autoimmune attack upon the thyroid gland. The needed tests are called FREE T3, FREE T4, and thyroid antibody panel.

    Best wishes to you.
  3. kellygirl

    kellygirl Member

    Thank-you for your very informative answer. It does help me to relax a bit. It doesn't hurt to be reminded to rest.

    I am glad you are doing well. Also, thanks for the thyroid information.
  4. Pippi1313

    Pippi1313 New Member

    Watch out for vaccines, with an AI!

    My AI is specifically listed as "contraindicated" on every vaccine info-brochure. Hence, I can't even take a flu shot.

    There are hidden triggers (both big & small) all over the place!

    Some only have the potential to cause a mild flare or reaction, but others are truly dangerous.

    Just another thing to be on the alert for!

    Be careful out there! Even some docs & nurses aren't aware of every contraindication. Do your own research beforehand & always ask the doc/nurse, before getting a vaccine.

    (Being sick is quite educational, huh? LOL!)

    Take care!!!
  5. kellygirl

    kellygirl Member

    It sure is! When I worked in direct care, I took care of a woman who came down with Guillain-Barré syndrome from a flu shot. It triggered it.

    I heard of anesthesia triggering flare-ups but never thought it would happen to me. Now, I know.

    When I would go into people's homes, the caregivers and families were very educated in their person's disorder. I learned a lot from them.

  6. gapsych

    gapsych New Member

    Kelly, I hope your tests come our okay.

    I get sooo confused with this subject.

    What tests are needed to show you have an IM disease?

    When I saw my doctor a couple of weeks ago, she said I am immunocompromised because I have FM, and recommended the flu shots which I plan to get. I forgot to ask her why she thought this as we had so much to talk about.

    A rheumatologist did some tests several years ago, but I don't remember which ones and they were normal. I thought they were for Auto Immune.

    I know there can be a small component of FM that MAY be inflammatory and I also have Costochondritis which is related to inflammation.

    I rarely get sick. Well, other than this DD.

    Thanks for any answers.


    ETA. Where is the information that you should not get vaccinated with AI? I would think it would be more important to get them if you are sick.[This Message was Edited on 09/01/2009]
  7. Pippi1313

    Pippi1313 New Member

    With an AUTOimmune disorder, triggering the immune response with a vaccination, can trigger the immune system to turn on our own bodies.

    It's cuz of the "auto" part. Stimulate the immune system into action, & anything can go snafu!

    That's the logic behind general non-vaccinating with an AI.

    But as I said, the info brochures for each vaccine will list specific AI disorders that are specifically contraindicated.

    Hope that helps clarify things.

  8. gapsych

    gapsych New Member


  9. kellygirl

    kellygirl Member

    I will not get any vaccines, just in case. After this, I will be careful about surgery, too.

    I just got one out of three shots for hepatitis when I did direct care, I stopped them after I read up on it more.

    My daughter, who is a nurse, said I should've finished the hepatitis series.