Thursday, January 15, 2015

past time I know...sometimes it just gets old

Living with a chronic disease can sometimes get old fast! I was recently asked, "do you sometimes cry"?  Yes, I have. I have even said, "it can't hurt any worse today" and I quickly remind myself, yes, it can. When those tears fall...I then say, alright enough of that, AS-you will NOT win!

I do believe in the power of prayer and the power of positive thinking. I've said it before, will I be healed, yes! It just might not be in this earthly body, it may come in a heavenly form. As for positive thinking, I am a firm believer that if you are in a constant state of "woe is me"...well, then it will consume you! I will NOT live my life that way!  That's not just about health, but about everything!  I assure you there is someone who has a "woe is me" that is NOT posting, that is WAY worse than your "woe is me".  And yes, I'm including myself!

So-this disease or two of mine...the ankylosing spondylitis, yea, it's just not my friend and LOVES causing havoc on my body and my life! For those following along on this journey of mine, you know I'm down to the last "approved" medication, simponi. Is it working? Well, not exactly! So, we are doubling the injections! Yes, doubling! I get to inject 2 of those huge suckers--one for each leg, hoping that it will hold for the month! We shall see. If not, we'll go to the IV form which is called simponi ARIA (hmmm ARIA-no comment needed for those that know me).  Well, I guess that's all I have on my AS and my drugs..that I'm blowing through like candy! AS winning so far ugh!

On to the eyes--the eyes are part of the biggest problem I have going on. Another of the reasons I'm blowing through drugs like candy. Why can't we get the eyes under control. Why am I losing eye-site so quickly and these flares in my eyes not stopping?  AS LOVES my eyes!  Just the other day, I had 2 teen girls say, one of your eyes is darker than the other...that was the eye that was hurting the most that day. And yes, it just jumps from eye to eye right now. So, until the meds work, I suffer from a dull steak knife being jabbed in my eye with sand being rubbed in it--yea, that about sums it up and no you can't clear it up. OK, that's the eyes..AS winning so far ugh!

The debilitating migraines--have I even mentioned these, can't even remember. These are caused by 2 things..the damage that the AS is doing in my neck/nerves/spine and the damage it's doing in my eyes. So, yea...there's that. AS winning so far ugh!

The pain in the "joints"--yea, the "joints" not just the back, but other joints as well--the hips have been really bad and then there's the knee that's pretty much gone. The neck/back of course always hurts. Until the meds start working AS will continue to win by destroying my body from the inside, so yea, you can't see it and no for the most part...I try not to let you see it. Although there are days and times that I wish for one moment you could see it--not feel it, but see it! I wouldn't wish this pain on anyone.

Fatigue--it's real folks--it's not just being tired. When your body is in a CONSTANT mode of destroying itself..it NEVER SLEEPS! It never stops. There are times I feel as if I can not even lift my head. Sometimes I literally am afraid of sitting down....the fear of not being able to get back up...it's real. Again, this isn't the same as "I'm tired".

So, tired of seeing misinformation about AS--that it's a mans disease, that it only affects the spine--that you MUST have sacroiliac joint damage FIRST or spine MRIs or X-rays before you can be diagnosed.  All of this MUST change! We need more medication and knowledge and information in doctors hands so we can be treated properly! An example of what just happened to me--I'm at the neurologist and I was commenting on how AS had done so much damage to my shoulder (had surgery 2 years ago) and he says, "I didn't know it damaged other joints"...WHAT??????????  I said, yes, it doesn't just affect the spine. ughhhhhhhhhhhhhhhhhhhh  This is a problem!!!!!  A HUGE problem. Now, granted my rheumatologist did say, well his specialty is neurology not AS/disease, but still--I want all the doctors I see to know MY DISEASE!  And yes, I will probably find a new neurologist because of this!!!  I'm seeing him because of how the AS is affecting me, he needs to know AS!  rant over AS winning..ugh!!!!!!

The holidays--schew--I learned some things! Until my AS is fully under control, next year (or should I say this year) holidays will be a bit different. 

I do get a LOT of suggestions for "things" that might help me. All are from folks that I know care. But, there's not a magic diet, or drink, or oil that will help cure me. Some of these things we all should be taking a close look at, even healthy folks, before we put in our bodies. Some things can interfere with medications that I MUST take. So, yes, I've actually talked to the doctor about every suggestion that I get. Those of you who follow my blog and do have a chronic illness, please check the ingredients very carefully (even those not listed) of what you are putting IN your bodies and ask your doctors before adding. Also, NEVER stop medication cold turkey. Some meds need to be "weaned" out of your system.  Here's my FREE 2 cents on being healthy--shop the perimeter of the grocery store. Try and eat healthy. Don't put sugar substitutes in your body. Cut back on sugar. Use whole wheat, eat low carb. If it's "man made"...really how healthy is it..really??  Can it be grown?? Do what works for YOU!  And don't super size it! hahaha

For now and for me currently, I know I said AS winning...but I always say and will end this post the same way...

AS HAS MY BODY, BUT NOT ME!!!

2 comments:

  1. Keep fighting!! You are one tough cookie and I look up to you! :)

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