Friday, November 22, 2013

eyes, knees, neck...it's just ankylosing spondylitis and it's a PAIN

If you've been following, you know my last post was on knee lubricant injections.  Well, I had 3 in 3 weeks...not a fun procedure, but none the less, when you hear a 70% success rate, hey might as well try it.  Sooo, yea, I'm in the 30% FAIL!  Didn't work.  In chatting about me just wanting to be able to dance at my daughters wedding in May, he says, no surgery talk until next summer.  Obviously he must think I don't have enough time to heal by the wedding.  In the meantime, there is something else in the works for me to try.  Try and give me more time until a knee replacement is all that's left.  More on that, when I actually get all the details.

Sooo on to the eyes, well, there are not to good.  Most folks with AS get the diagnosis of iritis, for me, well it's pretty much the same symptoms but actually the AS thinks that my eyeballs are joints and it's causing inflammation of my eyeballs.  I'm currently on steroid drops which cause cataracts...lovely...and my vision is now blurry.  Every time I try and go down on the drops...the pain is horrible.  I'm also having light sensitivity as well.  You ever wondered what iritis looks like?
It hurts!  All swollen, red, and just yucky!  And umm no, that's not actually my eye, mine are hazel.  ha

Now, the neck--saw a new doctor at the Emory Spine Clinic.  He says, he's plan of treatment will be trial and error.  See what works.  I literally laughed and said, "story of my life".  I will be having two injections in my neck the same day/time-C5-6 and C6-7.  Those are scheduled for Dec. 6 and sound like soo much fun (not).  Thankful for my sister who seems to now be my designated "shot driver" who is willing to take me for yet more injections.  I'm sure this car ride home will be more fun than the ride home from the knee injections.  Just hoping she doesn't record and post my drugged up comments!   Doc proceeds to tell me that my pain in my neck/spine is from the arthritis...I seriously thought, no s#@% Sherlock....but did refrain from saying that out loud. 

So, yea, it's a daily struggle with ankylosing spondylitis.  It actually is a minute by minute struggle.  Yes, AS can change your day with in a minute.  Autoimmune arthritis ankylosing spondylitis..that's me.  It's a continual destroying of my skeleton.  So, while you may not see it, I certainly feel it.  Just because someone may not look sick, doesn't mean that they aren't fighting to just do life.  I will fight with every bit of energy I have to not let this disease own me.  I will fight!

AS has my body, but not me.




1 comment:

  1. I also struggle with AS hell. I'm 34 and was just diagnosed this year. If it isnt one thing its another. I've just pulled myself out of a flareup. My house is slowly getting back on track. My lower back pain has subsided to mere discomfort, but my neck has decided to freak out on me. Im rediculasly frustrated. The only meds prescribed so far are naprosyn and flexeral, aside from the celexa and xanax for my anxiety, and prometrium for my progestero e deficeincy. It seems I can choose between sleeping till noon or staying up after the kids get off to school and having to lay back ddown by noon. My rhuemy has prescribed PT twice now butcar troubles keep putting that on hold. I also have 3 kids, cant work, but really need to. I have also had problems with my knees and eyes. I inherited extreme myopia from my mothers side and AS from my fathers. I believe it is the combination that has lead to a rare disorder called myopic degeneration where my retinas stretch so much they crack and leave scaring that give me blind spots. I also have cronic dry eye which makes my eyes very sensitive. Your not alone in your struggle. Keep your head up! We can enjoy life in spite of this dreadful desease.

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