Thursday, July 23, 2015

new house, new med, and raising $3000 for AS!


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 frustrating medical/medicine changes.  I’m currently on SimponiAria.  This is the LAST TNF for me that is approved for AS.   SimponiAria is an IV infusion that I get at the GA Cancer center every 4 weeks.   Have you ever gotten an explanation of your benefits paid for your services?  Well, let’s just say that I’m thankful to have a primary and secondary insurance!  Yes, I do have 2 insurances and the reason AS.  Oh, and I had these BEFORE Obamacare so don’t go there with me.  It was better until OCare passed.  Now, they will just MAKE you have to purchase insurance, but here’s the kicker....the insurance DENIES things!  Oh, yea!  So, the idea that if you have a pre-existing condition you’ll never be denied insurance again….well, LIE!  You just are FORCED now to purchase a worthless piece of paper!  OK—stepping off my soapbox now!  Back to the benefits paid question—have you ever seen what your medicine cost?  So, my every 4 week visit—according to my explanation of benefits letter—only $16,721!  How’s that sound?! CRAZY!!!  That does include blood work they do to make sure my organs are still properly working and yes, we have to check this, I am putting poison in my body that can kill me—I just literally LOL’d at that—but it’s true.  Can’t live without it, and must check to make sure it’s not killing me!  Hmmm  It also includes chemo which must be mixed in my IV—I do get 2 bags so that was new to me when I first saw that.  It’s a small/low dose, but whatever….So, do I think this last TNF is working for me?  Well, I’m really not sure.  I do know that it does something!  Without any TNF…it’s bad.  I’m following what’s coming out soon and there are new drugs that are in differing phases for AS.  Hopefully they will be released soon!!!  We need more knowledge and education! 

Knowledge and education is the key for folks like me with AS to be able to live a “doable” life.  A “manageable” life.  I would LOVE to wake up and be pain free one day.  I would love to not have thoughts of will I be able to do that or can I make it.  Those like me would LOVE nothing more than for folks to “get it”!!!  To understand that what they are selling will NOT heal us or rid us of medications that we MUST take to slow the progression of a disease with NO CURE.  Read that last sentence again.  See, those medications can’t even heal us.  There’s NO REMISSION and NO CURE, just good days and bad days.  So, I FIGHT AND FIGHT I WILL!  Fight to LIVE and fight for AS.  Yep, I said, fight for AS—for education, knowledge and for everyone to know this name; ankylosing spondylitis.   I’m tired of all the incorrect “facts” in doctors’ offices (just one-its 4-1 male) and being spread around (diet helps cure you)—and this makes me what to start typing a list of incorrect facts—but where I’m headed is my fundraiser for AS.  This November I’m headed to participate in the Disney Mickey Jingle Jungle 5K.  My body will NOT let me run a 5K or walk it for that matter, but you better bet I am going to try!  With the help of my girls we will BEAT AS and cross that finish line together.  I am trying to raise awareness and $3000 for AS.  Your donation will go DIRECTLY towards the Spondylitis Association NOT me!  This is not a “go fund me” for my trip!!  ALL, EVERY penny goes to SAA and its efforts to help those like me.  This organization is an excellent help in providing awareness and education and just maybe one day a cure for AS and spondylitis related diseases.  
Please go to http://www.crowdrise.com/ASjinglejungle to donate and read all about the 5K. That link will also provide you information on the Spondylitis Association of America which you are donating too.  ALL DONATIONS ARE TAX-DEDUCTIBLE. 
The Spondylitis Association of America (SAA) is the only nonprofit organization in the US dedicating all of its resources to improving the lives of people with spondyloarthritis. SAA is committed to advancing medical research into the causes of this often overlooked and critically underfunded family of diseases with the aim of facilitating earlier diagnoses, developing more effective treatments and effecting more positive disease outcomes. The organization’s mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.  For more information, visit www.spondylitis.org. 
Will you help me get to that $3000? Any amount is greatly appreciated and again goes directly to the SAA.  Also, ALL donations are tax-deductible (US citizens need to know this one!!).   I will keep you updated closer to the 5K and of course after.  It will be a challenge for my body to complete and the pain will be horrendous…but as I have always ended and say

AS has my body, but NOT me!!

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