a new spoonie purpose for me this awareness month.

May is Arthritis Awareness Month. It is also the Awareness Month for Celiac Disease, Cystic Fibrosis, Chiari Malformation, Lupus, and several other serious spoonie diseases.

I’ve written often about my struggles with rheumatoid arthritis and celiac disease and the struggles our daughter is experiencing as well. I’ve shared all the issues we’ve had with doctors not listening or not helping. I’ve reported weeks where we just could NOT stay out of the ER. I’ve done my best to describe just how debilitating the pain and fatigue of these illnesses can be.

And they are miserable.

But, as I also have recently shared, I’ve had some great things happening too with my graduation.

Actually, these came today (yay!!!):

In addition to helping people with standard American dietary issues (which I also really want to do), I feel I am in a unique position to help my spoonie sisters with the problems we face:

  • Where they may go to the doctor and only get 10 or 15 minutes to report their concerns (which, though usual, isn’t enough time to begin to discuss complex medical issues), I will take time to actually sit and LISTEN to the whole story. Also, our families need a break sometimes too from hearing the symptom report (it’s okay – we know). I can be great for a sympathetic ear.
  • I will spend whatever time is needed sorting dietary needs and issues and supplements and other alternatives to help relieve symptoms, where they won’t be getting that from their physicians (this I KNOW).
  • Because I have a strong nursing background, I am familiar with the side effects of our meds, so I will be helpful there as well.
  • I will be available by email anytime, unlike our physicians.
  • Most importantly, I live with this as well and I will BELIEVE them. I can’t count how many stories I’ve heard of patients not being believed at their appointments and it’s terrible. I actually understand what these illnesses are like. Really.

After being unable to work as a nurse for the past year, I honestly feel like this is what I am meant to do and it is a way I can be of service to our community so I hope to spend this awareness month being helpful in a small way at least.

I am so excited.

Be well, everybody. Happy Thursday!

Grace and blessings.

 

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