Health Crisis Survival
In November of 2016, I had back-to-back brain surgeries. I ended up in the hospital for a month and then faced a very long road (that I'm still walking) to recovery.
I'm a planner. Before my surgeries I planned everything. As it turns out, I was in no way prepared and neither were the people who would end up supporting me.
I've had a lot of time to think this year. I started to befriend others in a health crisis. I talked to people who were supporting loved ones going through a health crisis.
It seemed like everyone echoed the same sentiment - there is no instruction manual on surviving a health crisis.
And then I thought, why not?
In hospital waiting rooms everywhere you'll find terrible coffee, distraught and worried family and friends and magazines about the latest Kardashian decorating choice.
What you will not find is anything useful.
Earlier this year I started to create a few social-media digital cards on how to survive a health crisis. People started asking if I could turn them into a book so that they could share them with friends and family.
So that's just what I'm doing.
I want to create a resource for people facing a health crisis. From resources and practical advice for the person facing a crisis - to helpful things to say (and not say) to how to put together a helpful care package for friends and family.
This is what I want to do:
Write and print health-crisis survival guides for people going through a crisis and friends and family of people going through a health crisis.
And I want to make it free.
I am starting small. I've gotten the go-ahead for five waiting rooms. I want to have a few copies of each book available.
I will also be creating free resources online, I'll have a mini-podcast, and I'll make the books available as a .99 cent e-book
Here is where you come in. I need to hire a couple of people to help (already lined up) and the biggest expense - printing. I will do my best to keep costs as low as possible.
I don't need any funds for the podcast or online resources.
I'm asking for you to make a donation to cover a book (or two) I've calculated it'll cost around 10 dollars per book.
So, for every ten people who donate $1, that's a book for a waiting room.
I can't do this on my own. And I don't want to sell these books - people in a health crisis already have enough expenses.
If you can't donate, please share this on your Facebook page!
Thank you to those who have supported me this past year - I've learned so much, and I hope to make something positive of all of it, by helping others.
Thank you from the bottom of my heart. <3
"It's so hard." I reply to her about the book.
I go on to tell her that writing this has just opened this giant, unruly, messy can of worms. Because good resources and information is just not out there. There are scattered bits that are slightly helpful, but mostly it's a mess. I told her how I'm reading all of these stories of people who became sicker or lost their lives waiting for care or not knowing how to get proper care or because of some seemingly simple oversight that would have changed (or saved) their lives. So many people who go into severe, dark depression for a myriad of reasons. So many people who chose to end their own life.
"It's overwhelming because I'm in the middle of it. Because I get why people want to give up because it's just so taxing and feels impossible."
She smiles. "I guess that's why you need to keep writing the book. Don't get bogged down as much, anything is better than nothing."
She's right. So I plugged away and kept writing.
This month is my birthday. I keep reflecting over the past several years of my life, each birthday that I've had. I want to take what has been a really hard and continually difficult obstacle and make something positive out of it. Even if it just helps one person.
Thanks for helping me make that possible. Thanks for all of the encouragement.
If you are on Facebook - please share this campaign if you get a chance. I always appreciate it!
If you aren't following the HCS facebook page, you can do so here: https://www.facebook.com/HealthCrisisSurvival/
I've been posting daily tips and insights on crisis-survival.
This month I've covered:
How to Triage Your Crisis
Friendships during Crisis (and your foundation relationships)
Utilizing your Primary Care Doctor
It's also Rare Disease Month - with Rare Disease Day on February 28th.
Did you know that 1 in 10 Americans is living with a rare disease? 30 million people living with a rare-life-long chronic disease and more than half are children.
Having a rare disease is difficult and frustrating. Cushing's disease (what I have) is rare - 1 in (about) 6 million people. Because of this getting diagnosed was very difficult. Often, people with rare diseases go through countless doctors and wait many years before anyone is able to diagnose or treat them. The average Cushing's patient spends 6 years getting diagnosed.
Once I found a doctor who would listen to me and not dismiss my health concerns it took a very short amount of time (for Cushing's) to be diagnosed, get surgery and start treatment.
It's so important that if you are facing a health problem that you feel comfortable, safe and heard by your doctors. Advocate for yourself. If you feel like your concerns are being dismissed - it is probably time to find a new practitioner.
Thank you for your continued support!
I've been working hard on creating resources for people going through a health crisis.
I just wanted to quickly check in and wish everyone a happy February!
(It also happens to be my birthday month) :)
If you follow my page on FB I'm posting a tip a day for people going through a crisis.
Today's tip was all about using your primary care doctor as a resource in your health crisis.
I am so fortunate to have an amazing primary care doctor. She has been there every step of the way during the past 2 years. She's helped to coordinated at home care, checks in on me, and saw me every week after I got from my long hospital stay. She is the expert when it comes to anything small that might become big. She's also been a great resource for my mental health treatment.
And a note - it's flu season (if you haven't heard) :) Please make sure you are taking all the precautions and if you feel symptomatic please stay home! People with chronic conditions are put at such a high risk. Don't send your kids to school if they are symptomatic, stay home from work if you are, wear a face mask if you have to go out in public and be sure to have a bottle of hand sanitizer nearby.
Have a great day!
Just a quick note to thank all of you for your support and kindness as I get my book project off the ground.
Today, if you know someone going through a health crisis - new or long-standing, please reach out to them today as well as their caregiver(s).
This time of year is especially difficult for people facing health difficulties.
Today happens to be my brothers birthday! There is just no way I would have survived this year if it were not for him. He has been there through the worst days, days that I didn't know if I could do it another day.
The people in my life who love and care for me also love and care for my brother. I'm so grateful, specifically for my two best friends who have become sisters, Chrysanthe, and Lindsay.
Lindsay flew across the country a few times just to help organize, clean and cook. Chrysanthe will stay up till the sun comes up talking through anything. The four of us have become family this year. They've been incredible friends to me - but they knew that supporting and loving me also meant loving and supporting my brother - and in the process, we all became a little family of sisters and brothers.
It has shown me what true friendship is and family really looks like.
In 2018 make a point to not just reach out to people going through a crisis - but to the people who support them (like my brother). Know that without caregivers, life is impossible for many people going through a health crisis.
So, today, thank the caregivers in your life. Consider sending them gift cards for things like gas, food, self-care (like hair salons). Make 2018 the year of the caregiver.
Thank you again for your support!
Merry Christmas & Happy Birthday to my brother (and hero), Roman.