Wednesday, August 13, 2014

new meds...and a new disease

Seems I'm running thru the TNFs as fast as they get approved!  Having an autoimmune disease with no cure means a life long fight to LIVE.  I talked with someone the other day about being sick, and we both talked about how the "little things" aren't really little anymore.  Also, how we take things for granted--oh, boy do we. 

It's always wanting more and more.  New clothes (when our closets are full) a bigger house, when the one we live in is basically empty--I know there's furniture, but the house itself sits empty.   I'm sure we could survive a zombie apocalypse with our "stuff" that's in our home! 

See the thing is, when you are suffering daily with a disease that you know has no cure, you start to look at things a bit differently--oh, I'm not saying I'm better than anyone in my thinking or that I have given up the "stuff"--I'm still very guilty, but I have learned to appreciate the "simple" things.  For me, it's not about a bigger house--can't clean it, can't do stairs, need to be handicap assessable are the things that come to mind.  As for clothes, it has changed in a since that I must wear something that doesn't hurt.  Yes, clothes hurt.  And then there's the eyes...I love watching my "critters"--the birds, the squirrels, the chipmunks, and the rabbits (yes, I'm feeding them ha).  What will I see in the future comes to mind since one of my symptoms is vision loss.

So, for now, my ankylosing spondylitis (AS) seems to be taking charge, even though I'm putting up one heck of a fight (and will continue to do so).  I've gone through methotrexate, Enbrel, humira, remicade, and Cimzia (TNF's).  There's currently only one left for me to try that is AS approved and that's simponi.  Simponi is an injection, now they also have simponi aria (kind of partial to the aria part) and that one is an infusion.  So, we start injections in a couple of weeks.  We'll see how I respond, hopefully good and stay that way, if a partial response, then I'll move to infusion...if no response, well, we'll just pause there--it's going to work, right?! 

The eyes--didn't realize I have a totally different and new disease in my eyes now, thanks AS!  It's called episcleritis/scleritis.  There is no cure for this either.  Just managed care--for LIFE!  I'm still on several eye-drops and now we've added...wait for it...the dreaded steroids.  Can you say, weight gain, ugh!  Rheumy says, do not be concerned just have some crunchy things like carrots and celery to snack on.  My thought...don't have it in the house and you won't eat it!  The eyes are the most concerning to me currently.  They are not responding to anything.  They are sooo painful and my vision is just blurry now.  Before you suggest glasses/readers, this isn't about getting older.  My "vision" is actually (or was) 20/20!  This is a daily/hourly change in my vision because of inflammation.  So, it all depends on how the eyes "feel" at any given time as to what my actual vision is at that moment.  Glasses are not an option--this is a disease!  

This paragraph may make some mad.  Might make you "unfriend me".  I don't need suggestions of supplements, oils, gluten free diets,, or any other new fad--see I have not 1, but 2 diseases that are destroying my body...while those things are great, I have to be very careful as to what I put in.  See, they can interfere with my "must have" medications.  The disease isn't going away.  It can't be cured.  I do know that most that make suggestions are out of concern and love.  Things are working for them, making them feel better, but the bottom line is--you don't have a disease with no cure.  Prayer would be the first thing that I ask you do to.  And then, I'd ask you gain knowledge and help spread awareness and lastly, support the spondylitis.org association. 

For now, I wait.  I wait to see how AS and scleritis will affect me today/hourly (yes, it changes minute by minute).  I wait to see if the new meds will work and slow this disease and help with the excruciating pain I live in.  For now, I wait...

AS has my body, but (dang-it) NOT ME!!!!

2 comments:

  1. You are amazing! So uplifting! I to have AS. I have always said I hate this disease because there is no cure. And I love this disease because I have had the opportunity to meet the most amazing and supportive friend! Hugs to You!

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  2. Thanks TShurley!!! and gentle hugs to you too

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