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.

Saturday, January 11, 2014

Photos in the Desert

I will marry my Running Buddy in under two months.

I can very easily get overwhelmed when all attention is focused on me. And I'm about to be a bride. Ack. In a future post, I will explain how even good stress such as super happy moments can drain all of the energy from me. For example, I was very close to passing out on the day that I bought my wedding dress.

However, I can do simple things that will make March 1st go smoothly with my Addison's. One of these things included meeting with our wedding photographer before the wedding in order for us to get to know each other. Because I mentioned how I miss the beauty of the desert, she scouted out an amazing location for our shoot. This involved driving a good hour outside of the city, parking the car on the side of a freeway, hopping two barb wired fences, and hiking a bit through the beautiful desert.

It had been a while since I have done any regular physical activity. I was actually unsure of how my body would react to exploring uneven terrain.

Before we began the photo shoot, I ate a small snack and took an extra 5 mg of HC. Then we hopped over the barbed wire to scout out the best rocks, grass, and cacti.

I kept a water bottle nearby, drinking from it rather frequently.

Each time we climbed on a new rock, my Running Buddy held my hand and stabilized me until the dizziness caused by my POTS had subsided.

After the photo shoot was over, our photographer asked more about my Addison's Disease.

I mentioned how the fact that I was able to be out in the Desert for these photos marked a HUGE improvement in my overall health after The Nightmare.

He was quite proud of that cactus skeleton.
I told her about how I went from running a half marathon at a really good time to being couch bound for a few months until my mom and I could piece together what was keeping me so ill.

But she should not worry because I am finally doing so much better through my diet changeB12 treatment, and getting off of that horrible generic.

No matter what, I will never give up my fight to be Clearly Alive. And I have been blessed to have an amazing team of doctors, friends, and family who stand with me and support me with my journey.

She was silent for a while when I had finished speaking. After her silence came her shock that I would be out exploring the desert when I lived with a disease that can easily kill me through just vomiting. 

I explained how I cannot live my life in fear. I cannot be constantly worrying about the "what-if's." My life is an adventure, and I am going to make the most of it.

Bring on 2014! We are ready for you!

All photos were taken by Rebekah Sampson Photography. Thank you for the amazing work!
You can see more of our photos on Rebekah's website here.