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570413 tn?1299532661

The Spoon Theory

I wanted to recommend those of you that are having trouble with family and friends not understanding how living with Chronic pain/conditions work.  If you will Google "Spoon theory", you will find a sight by a patient that lives with Chronic pain.  She doesn't have Chiari, but rather Lupus, which has some similarities in symptoms.

This has helped me to understand a little better, what my daughter lives with each and every day.

I hope this is helpful to some of you!

Blessings,

Rebecca
6 Responses
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1041839 tn?1278681846
Rebecca, thanks for posting this! You told me yesterday but after i got off the phone i couldn't remember what it was called lol It really is a big help thanks! Shannon
Helpful - 0
1179332 tn?1297478990
I just watched the youtube video and it's really powerful!! It's amazing that someone can describe that well how you feel. I'm going to send this one around to the family...maybe they will stop commenting on how they think I am better and try to understand instead.. Thanks so much for sharing that!
Helpful - 0
570413 tn?1299532661
Yes, it does help with her pain, but we are waiting to see what other side effects (like dizziness, weight gain, and abdominal issues) are going to present.  And, sometimes it makes her feel *too* good.  Like in allowing her to do more than she should, and then leaving her to suffer the consequences later. :(   We'll see how it goes....

I am glad you're ok, and I hope you get a direction from TCI soon!  Praying for you as well!

Thank you for thinking of us! :)

Rebecca
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Rebecca I am doing ok,,waiting on the Drs at TCI for next move......I pray u get ur goals in fundraising.

Does the Neurontin work for her?..I was on the generic gabapentin and it affected my IBS and nothing else.....

I have been thinking of u both.

"selma"
Helpful - 0
570413 tn?1299532661
Hey, Selma!  Thanks for asking about Rachael.  She is about the same, unfortunately.  But, her pediatrician has just upped her Neurontin and started her on Mobic.  So, we are praying that these combined will bring her more relief.

We are hoping to raise enough money to get her to the Chairi Institute this year.

I hope that this can article can be helpful for those of you that are struggling to help loved ones understand how debilitating Chiari and Syringomyelia are.

Hope you are feeling well, Selma!  

Blessings,

Rebecca
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Thanks Rebecca !!  How is Rachel doing...miss seeing u on here : )

"selma"
Helpful - 0
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