Wednesday, July 16, 2014

The. Fight. Exhausting!

Why is it that with an autoimmune disease that we have to fight so much?  We fight to get out of bed.  We fight to make it through the day.  We fight to just live a normal life, which for the most part, is gone and will never return.  So, why must we continually have to fight for care? For folks to understand?  For knowledge?  For medication? 

This exhausting fight is ridiculous.  I think for the most part, everyone is just so confused.  Confused as to what we have.  Confused what will help us.  I'm so tired of talking with women from all over the world who have DOCTORS telling them, "well, it's not AS, because that's a man's disease".  Yes, I've even been told something similar, "wow, ankylosing spondylitis is a man's disease"....ummm really?! 

Just yesterday I saw a post where someone suggested it's not autoimmune but auto-inflammation...well, AS causes inflammation in the entire body.  All I know is that sometimes I feel as if I know more than a LOT of doctors! 

So, for me--off remicade and now on Cimzia.  My insurance put up a HUGE fight and didn't want me to have this new drug...why???  I mean remicade was around 7000.00 a month and Cimzia is 3500.00..aren't they saving money?  Why do I have to fight for my medication?  Medication that helps me with less pain, less damage and gives me that chance to just live.   Is there a co-pay, why yes, there is.  My portion is around 400.00 per month, BUT I have co-pay assistance for which I'm very thankful for.  This isn't the only medication I'm on, and I wonder is it working?  I have to wait for a few more months before a decision is made. 

I am not only suffering from AS, but episcleritis.  Got this because of AS.
  ----Episcleritis usually looks much worse than it actually is. (That sentence just fits with AS as well.  See you can't "see" the pain)  Although most cases of episcleritis go away, about one-third of cases are linked to hidden inflammatory problems present somewhere else in the body (got it because of AS, so yea, it won't go away).  I've been fighting this for over a year now!  It's not going away.  It's like the AS--I have good days and bad--sometimes my eyes are ok, and sometimes they are horrible--which is mostly here lately.   With episcleritis they suggest this--
  • Topical corticosteroids eye drops given several times per day
  • Topical lubricant eye drops such as artificial tears
  • Cold compresses 3 to 4 times per day
  • Non-steroidal anti-inflammatory medications given by mouth are prescribed in more severe cases
  • Yes, I'm doing all of those--but do you understand that to rest your eyes, you need to close them.  ummm...yea.  Then there's this---In some cases of episcleritis, scleritis may develop, an inflammation of the sclera that can cause intense pain and loss of vision.  Scleritis usually develops in one eye, but may affect both eyes together. The main symptoms of scleritis are pain and redness in the white part of the eye that may become severe. Other symptoms include the following:
    • Eye pain that may involve the head and face
    • Tenderness
    • Light sensitivity
    • Tearing
    • Blurred or decreased vision
    • Eye redness
    And yes, I have all of those.  See living with an autoimmune disease will be a daily fight for me.  A fight of new symptoms or problems that arise.  A fight to do life.  So, why must I (we) fight for healthcare and medications at the same time.  Just crazy!  But, FIGHT I WILL! 

    Eye doctor next week...not sure what he'll say, but usually it's the same thing...just keep doing what we're doing (which is 3 different drops).  I take drops for the inflammation and then I take drops for the drops so that I don't get glaucoma--I know crazy right?!  Don't they zero each other out??  No, just drugs to get you well or manage your disease and drugs to help you not get other things because of the drugs you must take....okay??? 

    So, for now--it's a fight and know this I WILL FIGHT!  AS has my body, but NOT me!

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