Friday, June 13, 2014

new meds, same ole probs

It's been a whirl-wind at our house lately.

We had a wedding for our oldest--


Then one day after the wedding, I moved my youngest to Disney for the college program!


I found out right before my daughters wedding that my AS was winning over remicade.  The high dose I was on and the fact that I was continually getting worse meant my rheumy wanted to change drugs.  So, I'm now on Cimzia injections.  I've got a couple more months before we know if it'll work or not.  Praying that it will, since it's the last AS approved drug--been through them all!  Can I just say that giving yourself injections of medication that is as thick as oil it's NOT fun!  I'd much rather have the monthly IV! 



Then there's the eyes--see with AS there are other problems as well and one of mine, is the eyes.  Sometimes folks with AS get iritis but for me, it's inflammation of the eye itself.  The AS thinks my eyeball is a joint, which in turn means inflammation!  Inflammation of the eye is very painful.  When you have an injury to a joint, you usually rest it--well, this is the eyes?!  Rest them is not an easy option.  They are always working unless you close them--and even then there's pain.  Head back to the eye doc in 6 weeks and he says he may have to do injections--IN MY EYE.  I'm just not happy about that one.  I'm thinking ummm sedation!  It's my eye---I can see what you're doing....ahhhhhh  So, for now, 3 different eye drops and blurry vision.  And NO I don't need readers...it's the AS! 

So, I'm not doing the best and occasionally I feel like the AS is winning--especially here lately.  I will say that even though my body feels this way, I will not let AS win over ME!  I will fight and continue to LIVE.  Do I feel as if I could just stay in the bed some days, YES!  But, for me, I try with all I am to NOT let AS have me and I FIGHT THROUGH!  If you've read this far, those of us with autoimmune diseases would like you to learn about our disease instead of suggesting a diet, vitamin, drink or any other miracle cure that you or your friend may sale.  We would like to know, would you suggest or say the same thing to a cancer patient?  Seems like a harsh sentence and immediately some of you are thinking, "why would you say that? you're lucky, you don't have cancer".  Well, see you are right, we don't have cancer but we do have diseases that have no cure.  We have diseases that can kill.  We have diseases that we suffer daily from.  If there was some miracle diet or drink or whatever that would "cure" us...don't you think, we'd see no autoimmune diseases???!!!  Getting older and having aches and pains is NOT what I have.  I have autoimmune arthritis ankylosing spondylitis.  It's not "old age arthritis".  There is no cure.  There is only managed care from my doctor!  There's lots of medications and tests.  There is non-stop damage happening INside my body.  When I say I was asleep at 8, it's because my body is EXHAUSTED from the fight.  BUT--FIGHT I WILL! 

AS has my body, but NOT me!







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