Ankylosing spondylitis wife, mom, and grandmom!

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...

2 injections of Simponi down..is it working?  Well, I won't know until about 4 months--which is 4 injections (this is a monthly injection).  I love hearing from my rheumy, "well, we're out of options". I love hearing from the eye doc, "I'm getting worried"--of course I don't love either of these comments.  How'd you sleep last night? Do you wake from the worst pain and wish you could just sleep? I lost hours last night, as I do most--from pain. Ankylosing spondylitis and scleritis doesn't stop, rest or sleep. My body is continually attacking itself-joy?! You can't have a little AS, you either have it or not. The pain doesn't stop or go away. You can have more pain or less, but it's always there. Some folks call these flares--well, I've been in a flare since I was diagnosed, so I really don't believe I have flares. I just believe I have good days and bad. Here lately, there are mostly bad. The scleritis in my eyes is ...

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...

It's been a whirl-wind at our house lately. We had a wedding for our oldest-- Then one day after the wedding, I moved my youngest to Disney for the college program! I found out right before my daughters wedding that my AS was winning over remicade.  The high dose I was on and the fact that I was continually getting worse meant my rheumy wanted to change drugs.  So, I'm now on Cimzia injections.  I've got a couple more months before we know if it'll work or not.  Praying that it will, since it's the last AS approved drug--been through them all!  Can I just say that giving yourself injections of medication that is as thick as oil it's NOT fun!  I'd much rather have the monthly IV!  Then there's the eyes--see with AS there are other problems as well and one of mine, is the eyes.  Sometimes folks with AS get iritis but for me, it's inflammation of the eye itself.  The AS thinks my eyeball is a joint, which in turn means infl...

I log on and see...wow...a while since I last wrote something.  It's not because all the sudden you miraculously are healed.  Nope, that won't happen when you have a disease with NO CURE.  Sometimes the lag between the blogs is because you just don't feel that well or maybe just waiting on tests to share.  Yep, all of the above!  If you make it to the bottom of this very "medical" posts...you certainly get a round of applause, but hey, you never know what you might just learn that could help you on day! I've shared before about my youngest and her health struggles.  Her immune system is comprised and very low.  Her doctor wants her to write down every time she is sick.  Nothing like being 18 and keeping a "sick journal".   Her future could hold IVIg treatments.  I'll let you google that one.  For now, we pray for her to stay healthy--hard to do when you can't fight off anything.  For her levels to not drop any lower--not...

In October of 2012 my blog was on autoimmune disease and I listed some interesting facts: -50 MILLION AMERICANS suffer from autoimmune diseases -There are over 80 types/names of autoimmune diseases -Can you name an autoimmune disease? Only 17% of folks can. -Did you know that Type 1 diabetes is an autoimmune disease? I would say most know about diabetes but didn't know it was an autoimmune.  Type 2 is NOT!  -autoimmune diseases are conditions in which the body's own immune system can (among other things) cause damage to the skin, joints, and internal organs. The body actually attacks it's own cells. In other words the body kills itself from the inside . -they run in families/are hereditary -over 75% of those affected are WOMEN -it is possible to have more than 1 autoimmune disease at the same time and the symptoms are often similar which makes it difficult to diagnose -autoimmune diseases are a leading cause of disability and death -THERE IS NO CUR...

Usually my blog is for making all aware of ankylosing spondylitis (AS) a horrible autoimmune arthritis disease.  If you are not aware, please read past posts--knowledge is key!  For today--I'm seriously over the letter that is circulating around facebook--the "A Concerned mom's letter to teenage girls".  In case you haven't seen it and want to read it... http://givenbreath.com/2013/09/03/fyi-if-youre-a-teenage-girl/ The first time I saw this circulate, "Mrs. Pam" (blogger) had totally different photos, of which now, her first paragraph has mentioned she has changed.  Her photos at the time where of her "shirtless" sons!  I gave no credit to her blog because of that very reason!  It's not a double standard here.  Do I, as a mom of daughters, believe what she's written?  YES, but I would like to add, this goes both ways.  I prayed over my dauthers from the time they were born that God would send a godly-husband--the man HE has for...