Ankylosing spondylitis wife, mom, and grandmom!

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...

I start with spelling and grammar errors that you my find....I just write my AS life, don't judge! It's hard to live strong and positive with a disease that SCREAMS weak and negative.  I do sometimes think, I just wish you'd at least try and understand...but then, I quickly think, NO...you'd have to feel what I feel.  I don't want anyone to feel this way.  It's hard to not cry and scream, WHY? Why, this? Give me something else. Take my voice, my eyes, my legs...TAKE THIS!  I DON'T WANT THIS!  Interesting to read in my devotional this AM, that Jesus even asked God, do I have too?  I don't know why I have "this", but I know that I don't have to go it alone.  Even though it feels like the loneliest "thing" to go through.  I guess that's why we sometimes think, if only you'd try and understand.  Emotional start to what was an emotional day filled with 2 disappointing doctors visits and tears.  Yup, tears.  Rheumy is tryi...

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 c...

I've logged in a couple of times thinking I'd post only to log out.  Not for the lack of having something to say, but just nahhh why bother.  October was a month of doctor visits as always.  So, here's the latest. Osteoarthritis-OA ever heard of it.  I would bet that most have heard of that (spell check has) but not ankylosing spondylitis (spell check has not).  Facts on OA- -OA may also be called degenerative arthritis -it affects around 27 MILLION Americans -its the leading cause of chronic disability in the US -there are 2 classifications OA and EOA (erosive osteoarthritis-or inflammatory OA-EOA less common and more aggressive) -studies show a link to siblings and it being hereditary -often worsens with time -there is no cure -there are some treatments-medication, injections, or maybe joint replacement and so on and so on.  So, for me.  I found out the 1st of October that my right knee was basically gone. My ortho doc diagnosed OA....