Ankylosing spondylitis wife, mom, and grandmom!

Having an autoimmune disease can be frustrating at times!   There’s the constant changing or adding of medications in hopes of figuring out what will slow the progression of the disease.   What will actually “work” for you can be complicated and challenging to figure out.   Then you have to factor in what your insurance will allow you to actually have.   Why this is even a question blows my mind!! If your doctor prescribes a medication for you, then your insurance should have NO SAY as to whether you should “get” that medication or not. Every week begins with the glance at the calendar to see what doctor or doctors I have appointments with.   My sister once told me, “Your health is a full time job”.   Yes, it is!   Keeping up with the all the doctor’s appointments, fighting for medications, remembering if you took your medications, and then just making it through the day while in excruciating pain and the worst fatigue you’ve ever felt, IS a full ...

It’s been a LONG while since I last “blogged”!   We have moved to our new house.   Having an autoimmune disease that has no cure, causes joint pain, and fatigue like you’ve never known—among other things—makes life hard, but can make things like moving…hmmm I don’t even have a word!   I do LOVE my new house.   I love that it’s ours!   I love the fact that my hubby built it for ME!   Yes, we did think about me, this disease and my future in some aspects of our home.    Why have a tub in the master when nobody will get in it?!   Make the shower big—big enough that if a shower chair is needed, there’s room.   Make the door ways handicap accessible.   Yes, my home is ready for whatever ankylosing spondylitis, AS, throws at me!   This is NOT giving in to a disease, but being proactive!   Saving money when building our home!   And hey, it made for moving furniture VERY easy!! Haha   I’ve also gone through some...

First-if you are the grammar and spelling police...you will hate me, but I blame obamacare! read on! LOL Did you catch that headline? If you follow along on this blog journey (of a mess) of mine..then you'll recall that I commented way back when Obamacare/affordable care act was passed that I was scared that one day I'd be denied. I also had a "healthy 20 something" comment on facebook how wrong I was and I how fortunate we were that we'd never be denied healthcare. Well, I did delete said "healthy 20 something" because I couldn't take his ignorant comments anymore, but yea...here we are..I'm right and yes, you're still ignorant. OK--I might not be denied "purchasing insurance" but that's not "healthcare". Let's get this right folks. We are now FORCED to buy a piece of paper that's..useless. I had good "healthcare" until obamacare came along. I had good healthcare until all the changes. My husband...

I write a great blog when I'm laying awake in the middle of the night.  The only problem is I write that blog in my head as I'm trying to go back to sleep.  For those of us who suffer with 24/7 pain, our bodies NEVER rest (sleep) so we often lay awake in pain sometimes for hours.  I really did have a great blog all completed in my head last night..thing is, can't even remember any of it!  Just know it was a great blog! ha That's the other thing those of us who suffer from fatigue and chronic pain face, "brain fog".  It's real folks.  I had to pause a second just to think of the term-brain-fog!  It was lost!  So, here's the crappy blog I can think of right now...LOL.  Just me and AS.... I often chuckle to myself when folks mention how "tired" they are.  If only they knew the "true exhaustion" felt by those of us suffering with ankylosing spondylitis.  It's not a "tired" feeling, but a feeling as if you are stuck in qu...

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...