Ankylosing spondylitis wife, mom, and grandmom!

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....

What I've seen a lot of this week with Affordable Care Act (Obamacare) and the government shut-down is that folks like taking a stance for something that they really don't know much about. And please don't insert a Jimmy Kimmel video where folks think ACA and Ocare are 2 different things.  People it was for  TV and yes, they only showed the videos that make for good TV.  I assure you there are folks who know the difference--but that wouldn't make for good late night TV. So, I post on FB--it was a post about political crap kind of day... Number 1---if Ocare was soooo great, then the first folks that should be FORCED to have it IS Obama and his family and then all the crooks up there in Washington. Number 2--folks like me, who have a disease with NO CURE..let me say that again...NO CURE, require medical things that most don't understand. Forget understanding the stupid Ocare--cause I understand how now, I'm going to be lucky to get treatment because of the ...

Of all the folks who should be saying those 2 words..ankylosing spondylitis, why don't they?  Who am I referring too, DOCTORS! Ever wondered "how many docs does it take to diagnose ankylosing spondylitis??"  I seriously sometimes wonder.  The problem is there is sooo many autoimmune diseases and sooo little knowledge.  Also, have you ever just wanted to really say how you feel to someone?  I think I'd get in trouble if I said how I feel sometimes. ha So, this post is for those who want to speak your mind--here goes It must be nice to lay around and not go to work--        It must be nice to be able to go to work and not lay here in pain. They say that most illnesses are caused by stress--        It must be nice to live a life stress free, because there are folks that actually have no stress?! You must be feeling better today because you're out and about--       um...

In my last post I talked about my girls and featured the youngest and her struggles as well as success as she's grown into a beautiful young woman.  Today, I'm excited to say my oldest is engaged to a wonderful man (whom we love).  She has an exciting new job as the Marketing coordinator for Key West Aloe.  It's exciting to see how both of my girls are blossoming into young women!!  Planning a wedding with AS is "challenging" at best.  We have a LOT to do over the next year as we prepare for that special day.  When I occasionally wake up throwing up and have no advance notice that this will happen, or have a major flare, it does make me wonder and pray for none of that to happen on days that are "wedding stuff days"!  Then I'm quickly reminded that I have no control over AS, but I know who does and pray for Him to take care of it!  I place my AS in God's hands! My last 6 weeks have been exhausting and stressful.  I've watched my oldest ge...

Over the past month or two, so many changes have happened in my life or I've gotten news of what's going to happen the remainder of the summer with my girls.  I've celebrated 2 graduations, one from college and one from high school! I'm going to start with the high school daughter.  I know, we usually start with the oldest, but this time--it's the youngest, I'd like to chat about.  This "chat" may offend some, and well, let's be honest here, if you've been following my blog, you know I speak/type with exactly how I feel, no sugar coating!  I'm so proud of my sweet Lou!  Graduated with honors!  Headed to college and knows exactly what she wants to do!  All of this while being bullied often, and also struggling educationally at a young age.  As parents we were first advised of her "struggling" in 1st grade.  We helped her along and in 4th grade she had a wonderful teacher, Cathy Falzone, who knew exactly what Lou needed!  She just...

Over the past month I've added a new doctor to my very long list-dermatologist.  I've had this terrible rash from head to toe!  It continually got worse.  So, I head to the dermatologist he examines me, sits down, and with folded arms say, "Wow, that's impressive.  I don't think I've ever seen anything like that" ....and he did a biopsy.  A couple Thursday's ago as I'm hooked up just about to start my remicade and I get the call....one of your slides is showing shingles--STOP THE REMICADE!  On meds for shingles I go and back to derm. ASAP to give him more skin!  I was able to have my remicade a week late and boy was I feeling every single day!!  I've also gone back for the stitches removal and follow up to dermatologist.  Here's his words... "You present an interesting case.  If I diagnose you, it would be a guess.  You have so much going on.  If you have another huge break out I need to see you immediately so that w...

Please take a moment to read the article.  So, helpful and true for those of us who suffer with this horrible disease called ankylosing spondylitis.  Also, if you could make a donation to this TAX EXEMPT organization that would be awesome!  www.spondylitis.org    By Dr. Walter P. Maksymowych      There are several aspects of Ankylosing Spondylitis that are only now becoming more widely appreciated in the medical community that have major implications for its treatment. As is so often the case, this has arisen following the application of a new technology, in this case Magnetic Resonance Imaging (MRI). This has enabled us to better understand the conundrum as to why patients with AS have a more fragile skeleton despite the overgrowth of bone that is so typical of this disease. This, in turn, has led to the introduction of additional therapeutic approaches for this disease.      Why do patients with AS...