when your DR says, "you are making my brain hurt"

The moment the ophthalmologist puts his hands on the side of his head and says, “you’re making my brain hurt”.  Have you ever had this happen while at the specialist for a recurring visit? I have!  AS is in my eyes!

Living with ankylosing spondylitis (AS) has certainly been a challenge. When you’re diagnosed they really don’t tell you all that can happen.  Basically, they just tell you about the potential for spinal fusion.  They leave out that AS can damage every joint in your body!  They leave out that AS can affect your eyes, your heart, your lungs, can cause inflammation behind your vocal box (not fun for this singer) and yes, can cause death.

Why is it that so much information isn’t shared when you’re diagnosed?  One reason is simply that some doctors aren’t fully aware of what AS is and does.  Another reason is there is too much old data and information out there.  And lastly, AS effects each person differently.  Autoimmune diseases are complicated and hard to diagnose. There are those living with milder forms of AS and continue on with their lives, but for most of us living with AS, that’s not the case.  AS is a daily struggle…simple things like getting out of bed can be a struggle.  Nothing like starting and ending your day in severe pain and fatigue.  And no, I’m not talking about, “I’m so tired”.  We wish we were, “so tired”.  It’s a fatigue that only those with autoimmune/auto-inflammatory experience.  It’s a fatigue so severe that you can compare it to trying to walk in concrete.  You can not move without it taking every bit of strength you have left.  It’s a fatigue that even a nap won’t help. See those of us that are living with auto-inflammatory disease do not get rest.  Our bodies continually being destroyed and continually fighting…even in our sleep.

For the past 5 months, I’ve been recovering/healing from anterior cervical fusion and discectomy (spine/neck surgery).  The AS had done a number on my neck area and I had no “cusion” left between several discs.  The doctor went in and took out those discs, inserted some “titanium hardware”.  The plan is that the new bone that AS causes to grow, will fuse correctly around this hardware.  Basically, we’re helping me fuse “correctly” and not in a forward stooped position. 

Joys of living with AS is that plate and screws will NOT cure me.  It takes care of one problem.  I currently need knee replacement as well, but I’m just holding off as long as I can and the sacroiliac joints/hips aren’t “cooperating” either!

There is no happy ending.  There is no cure.  There is not one day of my earthly life that will be pain free. There are medications that help me “do life”.  Medications with horrific side effects, but medications I must take.

So, what can you do for me? Pray!  Learn about AS before you try and “heal me” (insert rolling eyes emoji).  Make sure you learn from the correct information that’s floating around, because so much of it is wrong. Don’t say, “my aunt Bee has that and is fine”.  Yay, for Aunt Bee, but AS effects each and every person differently.  There are over 80 different auto-immune diseases and they LOVE traveling with friends!  Which means, if you get 1, more than likely you’ll have others as well.  My current situation!

This photo was in my rheumatolagists office and actually was one of the best photos I’ve seen!  AS isn’t just arthritis of the spine (for some, the spine is fine).  AS can DESTROY your body!  AS does NOT discriminate in age, sex or race.  Anyone and any age can have AS….yes, even children (I know some who are suffering).

 

When you look at this picture, put my face on that female, and every label you see is not what CAN happen, but what IS happening to me.  For me, AS is in every single label.  This “hidden disease” is NOT hidden from me.  I deal with AS every single day….every single minute.   But,  I will continue to fight and I will continue to say….

AS has my body, but NOT me!

If you read the last blog and are curious about my current medication, Cosentyx…the jury is still out!  It’s not helping my eyes….