You are your only advocate

By -
I'm trying to stay good about keeping updates on the good ole blog, but at times you just forget...or just don't really feel like much of anything.

Vacation was wonderful! We had an amazing time at our friends beach house with basically no connections to the "outside" world as our phones pretty much had no service. It was actually AWESOME!

I actually read on someone else's blog that you should always have pictures..but I haven't even loaded them to the computer yet...sad I know! I will load and post soon. One week ago today we were riding home from a wonderful family time. However this particular week has been horrible for me!

The first few days home were spent waking in the middle of the night with the most horrible middle back pain. The past 5 mornings have been spent waking with the worst headache. No, it's not gone.....still a small reminder that it's there. I'm wondering why? Why am I waking with a headache everyday. Is it that my neck is fusing? I don't know...

Also, this week has been spent fighting for medication that the doctor has prescribed. So, why is it so hard for insurance companies to "approve" medication that one obviously needs. Yea, sure I just want to give myself Humira injections every week for the rest of my life--hellooooo??!!! Just approve my medication!!!!

FIGHT! FIGHT for what you need. Don't let insurance or even doctors for that matter not hear what you're saying--what you need. After days and hours on the phone--and not to mention this week long head-ache--I was at my breaking point, no you will not call me back. I WILL speak to someone who will fix this TODAY! I'm tired of being put on hold. I'm tired of being told I can't help you. I'm tired of fighting for my medicine! Fight friends! You are your best and sometimes your only advocate. Even though you mentally and physically don't feel like fighting anymore...keep fighting! Keep living!!! Yes, my medication will be here on Monday (even though I am supposed to have the injection today-Friday). But, the fight is over for a YEAR! YES and year!!! My prescription has been approved for the next 12 months. So--don't give up! FIGHT for yourselves friends!

AS might have my body...but I refuse to let it have my mind--even with a week long headache!!!!

Comments

  1. wirelessconnectionsJuly 19, 2010 at 10:43 AM

    Yep thats my fighter! You are the best advocate too!Love you honey!

    ReplyDelete

Post a Comment

Popular posts from this blog

when your DR says, "you are making my brain hurt"

By -
Image
The moment the ophthalmologist puts his hands on the side of his head and says, “you’re making my brain hurt”.   Have you ever had this happen while at the specialist for a recurring visit? I have!   AS is in my eyes! Living with ankylosing spondylitis (AS) has certainly been a challenge. When you’re diagnosed they really don’t tell you all that can happen.   Basically, they just tell you about the potential for spinal fusion.   They leave out that AS can damage every joint in your body!   They leave out that AS can affect your eyes, your heart, your lungs, can cause inflammation behind your vocal box (not fun for this singer) and yes, can cause death. Why is it that so much information isn’t shared when you’re diagnosed?   One reason is simply that some doctors aren’t fully aware of what AS is and does.   Another reason is there is too much old data and information out there.   And lastly, AS effects each person differently.   Autoim...
Read more

Weight loss/gain/bloating/gassiness.....

By -
Don’t confuse inflammation with weight gain/loss and/or bloating Just let that sink in a minute.  Some have already stopped reading...if you're wanting knowledge and education of inflammatory disease...continue on... Let me just begin this post by saying…yes! I’m going to make some of you mad and you’ll probably unfollow me on social media…I don’t really care. In a world of be careful what you say or post-- In a world of #metoo--- In a world of “political correctness”---- I see a LOT of folks saying (posting pictures) look at all this inflammation I had and now look at me.   Yes!   I see you’ve lost WEIGHT, but I do NOT see inflammation.   So to kick off this New Year full of get your gut right, drink my drink and/or join the gym and everything will be perfect in your life STOP! JUST! STOP!   You are actually insulting those of us who truly suffer from an inflammatory disease; those of us who are PRESCRIBED the only thing that will help with i...
Read more

Just trying to "do life" with AS and sometimes it's hard!

By -
I think I always start with how long it’s been since my last post.   Also if you are the grammar police, then don’t read anymore!   I’m certainly horrible at grammar and spelling, and don’t need to be told!   The last several months have been a real struggle for me.   In September I started having hives and I don’t just mean a little breakout.   I’m talking covered from head to toe and even down my throat.   Shots and steroids were given for what we thought was an allergic reaction….but to what?!   So, I went off meds and started adding one at a time—NOTHING!   Who knows what the cause was.   So, I go for my SimponiAria infusion in October and a couple days later…BAM covered again!   Shots and steroids and NO MORE SimponiAria. This has to be the cause.   Granted I do NOT want to be COVERED in hives again, but this was the LAST TNF for me!   I’ve been through all that are AS approved.   This did not make me happy, be...
Read more