I had the most amazing week of my life, and it was only for two days. I can't go into too much detail, but I will try my best to fill you all in.
I was in Phoenix teaching a nationwide team of medical professionals how to teach Drs, nurses and insurance companies how to use whole healing through treating the patient's whole as a person and not just their disease. It focused on patients with Cushing, a rarely diagnosed type of brain tumor in the pituitary gland . I had to go alone, as we had no one to watch the cat while gone.
It was amazing how interested and goal oriented each member of the sales and patient advocates were. They were so grateful for our input and really validated what we've gone through. They agreed with us that this type of tumor doesn't just wreak havok on your brain. It effects your whole system and subsequently your whole life. Therefore, the medications, radiation and chemo shouldn't be the only defense against this disease. It's so exciting to KNOW that there are real life angels out there that are on our side and fighting for us. Our disease usually falls through the cracks because it is so rarely diagnosed, that the diseases that are more rampant like breast cancer, leukemia, and heart conditions get the most attention and response due to the per capita patient to assistance ratio they get treated first because it's easier and more profitable.
I went with a fellow cushie and we met two others when we landed. In the two days that followed, I met many of you who read this blog. They were sales reps who are going to teach doctors about us, and about how many doctors have Cushing patients and don't even know it.
They each had to go through a month long "diagnosis" simulation where they got a glimpse of what it's like to just try and get validation. Then, they were walked through a 30min rundown on each of our lives using a sales app and our stories. Finally, they were treated to a very brief 45min talk where we shared what Cushing's has done to us and how hard living day to day was.
And afterwards, they called us heroes.
Let me repeat that. They. Called. Us. Heroes.
It still shocks me.
Heroes don't suffer like this.
Heroes don't get the shift like this.
Heroes do something to better others lives.
But I guess we are doing that last bit.
Between the steroids that the stress of it all caused to flow through my veins, and the extreme feeling of hope I feel again, I'm still coming down off of the high it created. Being in the midst of people, normal healthy people, who care about you, who believe you, who believe IN you, was something I have never experienced in my life.
Those of you who know what company we helped, please know that from the first email through my getting off the plane back home, I was treated with more dignity, more care, and more understanding than the vast majority of the health care profession. And I think I know why.
The man who diagnosed me was THERE! He left practice to consult with the people who are reaching out to doctors to re educate them on the reality of Cushing's. I was so upset to see him go, but he is truly doing "the work of God" as the saying goes. And it seems he is much happier too.
If I hadn't gone, I think I would have completely lost hope. I was close, for sure.
And in a way, I have. I got to meet someone who has been "cured" for years, and she explained to me that she never really got better. She just didn't get worse. So my goal is no longer getting better. My goal is to rearrange my life to suit this disease and what it has done to my body. It isn't ideal, but it is possible.
And it's a good step in the right direction, right?