Sunday, January 26, 2014

The Beauty of Community

I write about my life with Addison's Disease yet until yesterday I had never met another person with the same disease. I communicate regularly online through things like this blog or online support groups, but to share a meal with someone who could understand and relate? It was a luxury I had never experienced.

Ironically, it turns out that there are quite a few of us living in my city.

The idea started simple. We realized that some of us that lived relatively close to each other. We should meet! Once we picked the date and the location, we extended the invitation through other Adrenal Support groups such as National Adrenal Disease Foundation. I had no idea how many people would show up.

All of these ladies have had their lives affected by Adrenal Insufficiency.
Some of the women were just recently diagnosed. Other women had been living with this disease for over twenty years. Each of us had a different story of diagnosis, a different path that led us to that table. But one thing was apparent. We were all walking miracles.

There were additional horror stories of Emergency Rooms and Hospitals grossly mismanaging our Adrenal Insufficiency. Sometimes this resulted in being checked into ICU for several days. We realized the need to raise awareness in our city and begin campaigning to the local hospitals and EMT's to provide information so they will stop trying to kill us due to lack of training.

We all discussed that we respond better to taking hydrocortisone every four hours instead of only twice a day. I smiled as I watched many pill bottles discreetly pulled out and medication swallowed so that we continue to feel well despite all of the "good stress."

There was a great idea shared of getting a locket and putting a few pills of either prednisone or dexamathsone in it and wearing it at all times. If we could not reach our solu-cortef shot, we could reach the medicine around our neck and chew it to get it into our blood stream the fastest. This could prolong our lives until we were able to move again and seek out additional help.

Our emergency injection kits. Mine is the top left. I carry this in my purse at all times.
We showed off our different emergency injection kits. I like the eyeglass case idea and I just might upgrade to that. The pink case is actually insulated so that it is protected against extreme temperature changes.
The insides of some of our kits. We also asked for extra salt on our table.
We highly encouraged others who did not have their emergency injection to petition their doctors for one. In our city, ambulances are emergency transport only. Carrying our own solu-cortef shot and training those closest to us how and when to use it could easily save our lives.

We talked about how quickly we can "crash" or how we start to fade and suddenly cannot understand anything that is happening around us. We realized the importance of having a group that can help us watch out for low cortisol signs and symptoms, be it significant others or parents. When we start to fade, or crash, so often we do not realize what is happening.

It was an amazing experience. I would like to keep in touch with each of these wonderful ladies and continue to share life experiences with them. There is something so powerful in realizing that you are not completely alone in your journey, especially with a rare disease. There are others that can relate.

If you had just seen us sitting there at the restaurant, you would have never known that all of us shared the bond of broken Adrenal Glands. That's one of the challenges of living with an "invisible" disease. Perhaps through continuing to raise awareness on invisible diseases, our lives can have a brighter future.

Ladies, please join with me on the fight to remain always Clearly Alive.

11 comments:

  1. This is awesome! I can so relate. :) I remember my first Gluten Intolerance Group meeting and then my very first dining out and holiday party with them. It was truly life changing. Hope you are all able to continue getting together like this!

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    1. Thank you Casey! It was such an amazing experience :)

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  2. Hi Amber - I actually stumbled upon this blog thru a support group I joined that's out of the UK as I couldn't find any here in the states. I live in Southern California - is your group anywhere near where I am, or would you know of one that is? My UK group are organizing get togethers but obviously flying to the UK is a bit difficult (although I'd love to as being a part of their group has truly been a life saver since being diagnosed.) but if there is indeed one close to home I could join as well I'd be doubly thrilled. Thanks for any input. Danielle

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    1. Hey Danielle,

      That's awesome that you found my blog through the UK Addison's support group! :) I do know of some Californians. If you could send me an e-mail to my gmail "clearly.alive" I could see if any of them are close to you. Thanks!

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    2. Hi Amber! My email is danielledearing1754@gmail.com. I couldn't find your gmail so I hope this will get to you via this reply. Thanks so much!

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  3. Hi Amber, I came across your blog while I was researching some info on Addison's Disease. I am 45 years old, I was diagnosed with Addison's when I was 22 years old, I am very lucky to be alive, I was rushed to the hospital with no blood pressure, doctor who saved my life actual recognized some of the signs of Addison's disease and was able to save me in time! I too have had "emergency nightmares" but am happy to say that there is definitely more awareness at the hospitals in Ontario, Canada and they now have a protocol for Addison's patients who come to emerg. The quote you have on your home page is my favorite quote, I have it posted at home and I read it everyday. I made a decision not to let this disease define who I am, I definitely have my ups and downs but feel grateful everyday. Thanks so much!

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    1. Welcome Kim!

      I actually first read the quote "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain" on a picture frame while visiting Vancouver. I have loved it ever since.

      And it is so encouraging to hear of others who refuse to let this disease define them. We have our good days, we have our bad days, but we will fight every day to live our life in such a way that they know we are Clearly Alive.

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  4. Hey Amber,
    Where are you all located? Where did you get those stickers "Adernal Insufficiency"

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    1. Hey Heather,
      Sorry it took a while for me to respond. You can purchase the "Adrenal Insufficiency" stickers here: http://shop.aiunited.org/Home_c1.htm?page=all

      As for location? We're all Texan!

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  5. Hi Amber,
    I just found you today after being diagnosed yesterday! I'm not sure what to expect after all of this, and I'm a bit scared by all the horror stories I'm seeing on the internet. I'm just happy to have a diagnosis after 5 months of unexplained fatigue and nausea. Any advice for a total noob?

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    1. Welcome Dory!

      Best advice I can give is to view your diagnosis as a diagnosis of LIFE! Without treatment, we would all be dead. With treatment, we have the opportunity to live our lives. Now, our lives do look differently than pre-diagnosis. But honestly I was so insanely sick before my diagnosis I have no desire to go back to the "old" me.

      If you use facebook, shoot me a message on my art page (search FB for clearly.alive.art), I can link you up with some online support groups through there. If FB is not your cup of tea, link up with NADF or AIU. The ability to be able to connect with others who walk similar paths is so powerful!

      And feel free to keep in touch via my blog :)

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