Ankylosing spondylitis wife, mom, and grandmom!

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.   Autoim...

I think I always start with how long it’s been since my last post.   Also if you are the grammar police, then don’t read anymore!   I’m certainly horrible at grammar and spelling, and don’t need to be told!   The last several months have been a real struggle for me.   In September I started having hives and I don’t just mean a little breakout.   I’m talking covered from head to toe and even down my throat.   Shots and steroids were given for what we thought was an allergic reaction….but to what?!   So, I went off meds and started adding one at a time—NOTHING!   Who knows what the cause was.   So, I go for my SimponiAria infusion in October and a couple days later…BAM covered again!   Shots and steroids and NO MORE SimponiAria. This has to be the cause.   Granted I do NOT want to be COVERED in hives again, but this was the LAST TNF for me!   I’ve been through all that are AS approved.   This did not make me happy, be...

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 no...

Often those of us with ankylosing spondylitis NEVER hear true words of cause of death or other reasons of maybe "things" happening like loss of vision.  We don't hear that the ankylosing spondylitis caused us to have loss of vision. Doctors instead will blame the medications that we took or will find another excuse because that will seem easier and will be accepted by others. Truth is..it's just the AS! If they'd start saying it, it would HELP us! It would help with education. It would help with more accurate diagnosis. It would help with an earlier diagnosis! Let's talk my eyes--2 years ago at my optometrist visit, I ended the visit with 20/20 vision and no problems.  Shortly after that, the AS decided it thought my eyeballs were joints and would attack them.  I was having the worst pain in my eyes, light sensitivity, the feeling as if someone threw sand in them and rubbed it in. I visited Dr. Tackle in Griffin (yes, I'll be calling out Drs). See (ha) w...

Over the past few months, as my health seems to be just on a downward slide, I've been feeling as if I wish I could see the end....the last treatment...the surgery that would fix me...the last round of med that would cure the infection..something..anything!  It's been hard over the last few months as I'm battling meds not working and changing quickly to "calm" this ragging disease that is taking over my body. My eyes seem to be in the worst shape right now.  The vision is crazy!  And before you even say, can't glasses fix it...NO!  See the inflammation in my eyes change day by day, hour by hour and even minute by minute.  There's no fix.  The only "fix" is to get the disease under control.  If you'd like to feel the pain that I feel just in the eyes (not to mention the rest of my body) then throw sand in your eyes and rub it in--then once you get it rubbed in, take a dull kitchen knife and stab yourself in the eyeball.  Yup, that sums it up...

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 ...

Why is it that with an autoimmune disease that we have to fight so much?  We fight to get out of bed.  We fight to make it through the day.  We fight to just live a normal life, which for the most part, is gone and will never return.  So, why must we continually have to fight for care? For folks to understand?  For knowledge?  For medication?  This exhausting fight is ridiculous.  I think for the most part, everyone is just so confused.  Confused as to what we have.  Confused what will help us.  I'm so tired of talking with women from all over the world who have DOCTORS telling them, "well, it's not AS, because that's a man's disease".  Yes, I've even been told something similar, "wow, ankylosing spondylitis is a man's disease"....ummm really?!  Just yesterday I saw a post where someone suggested it's not autoimmune but auto-inflammation...well, AS causes inflammation in the entire body.  All I know is that someti...