Can't Get Help. What Next?

What do you do when the office of Patient Experience won't help with a serious issue?

@jenniferhunter Oh, Wow! Jennifer this is an absolutely amazing and reflective response to my post. It both brings me encouragement to see how deeply you reflected on my constellation of symptoms, and sadness because it was this kind of conversation I had expected to have with my doctor at Mayo last week. This was exactly the level of professional medical assessment that brought me to Mayo and it brings me hope that this kind of integrative reflection exists.

I will spend some time over the next few days reading carefully what you written, but thank you for what genuinely feels like an act of love. On this Thanksgiving day I am thankful for the ability to find compassionate, empathetic and caring people in some of the most unexpected places.

I read your story (thank you for sharing it with me) and I found great hope in your own story of courage and the ability to overcome great odds to discover healing and second chances through medical miracles. I’m so thankful you have regained the ability to paint and to utilize the vast array of gifts you have been given for the good of the whole world. Thanks again for writing the above post. It brought tears to my eyes.

Also, @roch i want to thank you for your question about a possible allergic reaction to the implants in my neck. There is now more metal in my neck than bones, and I think this is a valid question to explore. It’s not one I had considered until now.

@faithgirl30 Thank you for your kind words. They brought tears to my eyes. I do put a lot into helping people who I think really need my help with understanding medical issues and getting past the fear. I am glad Colleen invited me into this conversation. Gratitude is very powerful, so pass it on every chance you get. You will have these conversations with your doctors so don't worry that it didn't happen on the first try. It will when you find the right doctor. You know what to do now. Write down what you want to discuss at your appointments so you won't forget. There is a saying that "love" is letting go of fear. Forgiveness goes a very long way too in helping you heal yourself. You are already ahead because you understand this. Let it be your inspiration to find inner strength and healing. You've got this, and we're here if you need support.

You might like this discussion about Art for Healing and you can find some pictures in my post on page 1 with Dr. Fogelson and his painting. Scroll down until you find it. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=1#chv4-comment-stream-header
On page 20, you'll find a video of mine. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=20#chv4-comment-stream-header
On page 24, you'll find a video of Dr. Fogelson's portrait. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=24#chv4-comment-stream-header

It is easy for you to say to let go of fear. You are not in my place. Why don't I matter?

I want to thank each of you for sharing your stories and resources. I continue to deeply struggle with the grief and deep sadness of not receiving help. I know doctors are human and they can only diagnose what they know. In fact, I work with a team of doctors locally in my home region in the area of physician burnout, providing them deep listening and an opportunity to share their own stories with me and each other — so I see their clay feet on a regular basis. But I have already lost a year of my life, waiting and waiting to get better. I guess, I misjudged the Mayo Clinic process and falsely believed that if one doctor didn’t know the answers I needed that they would reach out to their colleagues for diagnostic help and advice about where to turn next. It’s heart breaking, as many of you know only to well, to feel abandoned in the care process.

Thanks again for listening and sharing your own experience.

I have an appt for the first time at Mayo in Rochester on Jan. 4th. Now I am wondering if it’s worth my time, money and effort to go. Praying you’ll find a treatable diagnosis!

My advice is never give up. Regroup and take your battle to your affliction. Find moments of inspiration to go at it a different way. I have received very good care at Mayo Rochester and Jacksonville. I've also seen specialists at Cleveland, and IU Health Indy. Take a nugget of positive movement from each visit. My perspective is you are in the end your best and sometimes only champion of your own health. You have the most vested interest to keep up the fight. Don't take no for an answer. Be the first to prove everyone wrong and find your way forward. I was given a slim chance to survive esophagus cancer to even live 1-5 years. I am in year 12. Never look back, be thankful, build on what makes you strong.