Day 141 – “Yeah, my back hurts too.”

Art Apple - Day One Hundred Forty One

Art Apple - Day One Hundred Forty One

Caution:  Rant ahead.

If I could collect a dollar for every time I heard the statement, “Yeah, my back hurts too”  I’d have enough money to fund the entire HHS and CDC!

Ok, that made me laugh. But the point is that this is what we, as people with Ankylosing Spondylitis, hear. If you think about it that is a really intolerant, insensitive, and completely unkind thing to say to someone whose spine is slowly fusing together.

Imagine… not being able to touch your toes. You aren’t out of shape or lazy or don’t do enough yoga – come on! Imagine… you can’t go skiing anymore because a fall could not only hurt you, like it would anyone, but it could kill you. Imagine… owning multiple heating pads – there is a reason they are blue – blue for spondylitis!  More on this with a wonderful guest apple I’ll be posting on Sunday. We aren’t dying, our disease is not terminal. We are just living a very difficult existence. Please be more tolerant and kind if you hear someone is dealing with AS or chronic pain.

I don’t want to rant but I’m passionate about trying to help people understand that there is a difference between my lovely husband waking up and saying he’s sore or his back hurts, and the pain I deal with. And – I’m doing so much better – I’m one of the lucky ones who can get access to the crazy expensive drugs that give me the strength and ability to have a basically normal life. Imagine… being one of my friends like Shashwata Satya from Bangladesh who is a brilliant young scholar who has had multiple surgeries and had a taste of life with Remicade but now can’t afford to continue to get it. He said “I could fly when I was on Remicade” and now he’s firmly attached to the ground and he’s suffering. Imagine… being my friend Ron who is charming and giving and a wonderful new friend I’ve met through ASAP who is in so much pain and he can’t get anything from the Canadian health care system (something I hear repeatedly) and that he’s distraught. Imagine… my dear friends – a life with AS.

Until tomorrow.

Jenna

Day 141 was created in ink and acrylics.

Comments 10

  1. Janelle Gingrich-Caudle wrote:

    This is so well written-Bravo!!! Thank you, my sister in suffering! Thank you for making this point clear. You are my kind of lady-you do not let your suffering go without fighting for someone who is without care. I. am. with. you.
    To whom much is given, much is required…

    Posted 19 Feb 2011 at 6:10 pm
  2. Jenna wrote:

    Janelle,

    Wow! Thank you my friend. I am extremely touched by your kind words – my AS friends don’t cease to amaze me.

    I look forward to our friendship and working together in our fight to help others.

    Jenna

    Posted 19 Feb 2011 at 6:31 pm
  3. Jennifer LeBlanc wrote:

    This one strikes a chord with me. I also get the “yeah, I’m tired too” and I know people are tired all the time, but it’s not the same as the fatigue that comes with chronic illness.

    Keep up the good work, Jenna

    Posted 18 Feb 2011 at 10:42 pm
  4. Jenna wrote:

    Jennifer,

    Absolutely! I wish people w/o an autoimmune disease could feel “our” kind of tired. They’d think they had a horrible flu – lol! And we deal with this continually.

    I can’t wait to post your guest apple! (Sunday night everyone)

    Jenna

    Posted 19 Feb 2011 at 10:34 am
  5. Jennifer LeBlanc wrote:

    Yippee!

    Posted 19 Feb 2011 at 2:16 pm
  6. Kelly Young wrote:

    Well said, Jenna. On all points.

    Posted 19 Feb 2011 at 8:17 am
  7. Jenna wrote:

    Thanks Kelly – it means a lot to me that you stopped by and left a comment. I was chatting on FB with my friend Ron and I just started getting upset. I try really hard to keep this blog really positive but some days the dragon wins!
    Jenna

    ***Kelly is the RA Warrior, her blog is amazing and full of information that is important to any one dealing with RA, AS, or any type of Autoimmune Disease.

    Posted 19 Feb 2011 at 10:39 am
  8. Lyndsey-Jane Copeman wrote:

    Had to post to say I get people saying they too are ‘tired’ and I just want to scream at them – you are tired, I am fatigued!!! It is not the same, you can go to bed and wake up refreshed, I go to bed and wake up feeling worse some mornings.

    Posted 19 Feb 2011 at 11:32 am
  9. Jenna wrote:

    Lyndsey-Jane,

    You gave me goose bumps. Thank you for commenting – if we can just keep talking about what it’s like then maybe, just maybe … we’ll get somewhere. I think it’s worth a try 🙂

    Please take good care of you.
    Jenna

    Posted 19 Feb 2011 at 12:03 pm
  10. Mary wrote:

    Well said!

    Posted 01 Oct 2011 at 1:11 am

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