Tuesday, September 29, 2015

Full time job, AS jingle junle 5K


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 time job. 

Currently my list of meds seems to be getting longer! There’s SimponiAria every 4 weeks. It’s an infusion. Pretty short infusion only lasts about 45 minutes.  The long part for me here lately is finding a vein and then after finding it, praying it doesn’t blow!  I’m also still on daily Arava and I’ve recently added a weekly injection of methotrexate (MTX).  Anyone who’s ever taken the MTX knows it can give you some serious “hangover” side effects. All of these drugs are to slow the progression of the AS, and help with the pain. There’s a daily list of other drugs that I also take and 3 eye drops to help stop the AS from ruining my eye sight! Unfortunately, my AS has decided it likes my eyes!
 


And because of all those meds, there’s a monthly check of labs! Gotta make sure that my kidneys and liver are functioning properly and that I don’t have any infection. Scary meds that help me do life, but those same meds can kill ya! What do you do??!!! Stay on top of it and keep everything monitored at all times!  It’s a full time job!





The Spondylitis Association of America is a great tool for those of us with ankylosing spondylitis (AS). They are a non-profit helping to raise awareness and just like me hoping for a CURE for this horrible disease (and related diseases). As with any organization you donate money too, you should look where those donations go.  A lot of these have high CEO salaries and little money goes towards research. With the SAA, I know where my donation is going and I can be confident that they are working hard to make sure it’s headed to the right place! That’s why, I am currently trying to raise funds for the SAA and need YOUR HELP!

 
 



Me and my girls will be participating in a 5K on Nov. 7th. It’s the Disney Jingle Jungle. We decided that we would rename this to the AS Jingle Jungle and since it’s a 5K, try and raise $3000 to go directly to the SAA. The question that may pop in your head is, “Can you walk a 5K”? My answer is, “no”. I cannot walk a 5K, BUT I am determined to do this and my girls are determined to help me.  There’s no training that I can do and I will pay dearly for it, but the feeling that I will get when I cross that finish line holding my daughters hands to DEFEAT AS AND HELP FIND A CURE! Well, it will all be worth it! I’m asking for your help by donating any amount to the SAA.  Donations are tax deductible and help millions like me who suffer with this horrible disease. Yes, there are MILLIONS!  Please help me reach that $3000 goal. ALL donations go DIRECTLY to the SAA in hopes that one day we will have a CURE!  You can donate, read more on my story and the SAA at

www.crowdrise.com/ASjinglejungle




For now...

AS has my body, but NOT me!!!!

 

 


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