Ankylosing spondylitis wife, mom, and grandmom!

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...

For those of us that live with ankylosing spondylitis, making sure we have doctors that are educated on our disease can sometimes be hard.  Right now you may be saying doctors don't know about AS?  How is that possible?  You must be wrong.  Well, I'm not wrong and it gets VERY frustrating at times.  AS is one of those autoimmune diseases that really can be confusing for all involved, even the doctors!  What needs to be done is kind of a going back to the drawing board on their education and knowledge.  Here's 4 "things" I've seen and read about AS -men get it more than women -it starts in the sacroiliac joints (hips) -must see damage on x-rays/mri's -shows signs of inflammation in blood work These four things are wrong---first off, women don't get diagnosed properly because often times they have NO sac joint damage, because it affects other joints like the shoulders, ankles, etc.  X-rays and MRI's take YEARS to show any AS damage ...

Shoulder is progressing in the "healing department", but not as fast as I'd like.  I keep reminding myself the doctor told me a year...ack...a year?!  Physical therapy is..well..physical therapy!   I am feeling better for sure.  Trying to decide if pre-surgery shoulder is better and I do think it is, but there are those times that I think it feels the same...but that's the "not so patient" person talking.  I have to give myself time to heal. I did have someone tell me that they were out of their sling in 2 weeks--kind of jokingly--and I had to explain, my disease--then got a quick-oh?.  I am out of the sling now, but still limited as to what I can do.  I don't know how long until the pain ceases and the motion comes back, but I'll keep trucking! So, back to the disease of ankylosing spondylitis (AS).  This will not heal me.  I probably will have future surgeries repairing joints that are destroying themselves from the inside.  I...