Saturday, September 6, 2014

some days are just blah...

Over the past few months, as my health seems to be just on a downward slide, I've been feeling as if I wish I could see the end....the last treatment...the surgery that would fix me...the last round of med that would cure the infection..something..anything!  It's been hard over the last few months as I'm battling meds not working and changing quickly to "calm" this ragging disease that is taking over my body.

My eyes seem to be in the worst shape right now.  The vision is crazy!  And before you even say, can't glasses fix it...NO!  See the inflammation in my eyes change day by day, hour by hour and even minute by minute.  There's no fix.  The only "fix" is to get the disease under control.  If you'd like to feel the pain that I feel just in the eyes (not to mention the rest of my body) then throw sand in your eyes and rub it in--then once you get it rubbed in, take a dull kitchen knife and stab yourself in the eyeball.  Yup, that sums it up.

I need for the new Simponi to start working.  It's only been a few weeks and sometimes it can take up to 3 months before we will know.  3 long months...no sleep, headaches that would send the "normal" person to the ER, feeling as if I have the flu...pain so bad again, that would send the "normal/healthy" person to the ER.  See folks don't get it.  They can't understand it.  Most think it can't be all that bad, or I'd go to the ER...well, not true at all.  I've been laying with tears streaming because of the pain...wishing the meds would work...calling out to Jesus...but dealing with it at home.  The ER can't make it go away either!  It's here to stay.  It's not leaving.  I just seriously LOL'd because the point is, I think I'd live at the ER if I went when in pain. 

So, for now, we are waiting to see if Simponi works.  Hoping that the meds would calm the AS and the episcleritis that has invaded my eyes.  And I'm getting 3 rounds of injections in my knee--an artificial lubricant (you go 3 weeks in a row).  This lub usually only lasts around 6 months and this is my 2nd time doing this.  It's supposed to prolong a needed knee replacement.  Just SMH here...hoping it works but like I told the doctor, I could be dead at 60--I'm thinking quality of life now. 

Before I close--I'd like to add, the ice bucket challenge was great for ALS and raised a lot of money--yes, I did donate, but I donated locally.  I'd research before you donate to any charity.  Go online and look at where the money goes.  And if you would like to donate to the spondylitis association, I'd be very grateful.  This foundation uses the money to the fullest to help ME and the millions...yes, MILLIONS..like me!   Plus it's a tax write off!  Everyone needs those!  Even when you purchase something on Amazon you can select spondylitis.org and they will donate!

www.spondylitis.org

AS has my body, but NOT me!

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