Contributed by Bob “Oxygen Man” Rawlins, oxygen user and consultant to CAIRE Inc. ~
So, if you might have caught a couple of my blogs you would know that I am a bit of a movie buff, to say the least.
I’m accused of spending too much time enjoying movies and the arts. Personally, I don’t think you can ever spend enough time on a hobby such as this.
There are so many movies to fit your current state of mind or even help get you into a better frame of mind if needed!
Being a patient and volunteer at the Cleveland Clinic has been amazing in so many ways. I have discovered that many doctors share the same hobby – the love of movies, music, writing, etc. None will tell you they watch TV dramas like The Resident or Grey’s Anatomy. They live it every day. Understandable.
The Cleveland Clinic is one of the best hospitals in the world and they have taken outstanding care of me and my family. Living in this part of Ohio since 1994 has allowed me to learn and experience many stories in connection with the hospital.
The doctors and caregivers are nothing short of incredible. Many have become friends and super supporters of many things I shared with them about what I want to try and accomplish.
Things like helping others on this similar lung disease journey. Also, how to manage family ambitions as we grow and the real expectations of what I can expect. But never giving up hope or settling for less than I think I can accomplish. We can’t accomplish everything but that’s part of the journey and its success. Striving for things you might not think you can do anymore or trying things you never did before. It doesn’t matter where you are in life – sick, healthy or whatever – you can’t stop striving, right?
So, some exciting things have happened to me and my family along my journey.
Being able to talk to people about their journey and discuss mine has been an amazing experience.
After I started feeling stronger from my initial ordeals, I was then asked to share my experiences and speak to others at various groups. These groups ranged from pulmonary therapy sessions to other caregivers, doctors, and any audience they put me in front of.
The Cleveland Clinic asked me to get involved in a news spot that took place in the hospital while I was volunteering. A camera crew and producer followed me around and saw how I was able to interact with patients, doctors, nurses and visitors. It was very cool. I felt like a celebrity for a few hours but more than anything I loved the way people’s faces lit up when we were filming and discussing what was happening. It is just an adrenaline rush for me to be a part of those moments with people.
Then, my doctor, Dr. Kristin Highland, asked me to be part of a special film project that would allow me to put the spotlight on my story, my family and the challenges I have experienced. The goal: A teaching video for others to gain some knowledge and understanding about Pulmonary Fibrosis (PF) and Idiopathic Lung Disease (ILD).
Take a look by clicking this link.
Please excuse the fat guy in the film with a hose in his nose. He was on 30 mg of corticosteroids every day and was forced to eat like a horse. 😊
They didn’t describe to this actor the shape he needed to be in. (He has since lost 25 pounds and is refusing to acknowledge credit for the film. 😊)
Actually, this was so much fun to do. It was something like nine hours of filming and scene changes for less then 5 minutes of fame! LOL
They interviewed my wife and me individually. The film crew also set up some cool things with the kids as well.
The Inventi Group, LLC was just awesome to work with. They made everyone feel comfortable and are incredibly talented with their trade. They even used a drone camera. My son was all over that and they showed him how they were using it and controlling it. It was just incredible!
Definitely check out the video and please share it with your loved ones – anyone that might be going through this type of journey or even caregivers – those family members who are along on the journey supporting the individual experiencing PF or ILD.
Just for the record, I didn’t have my own trailer or dressing room. I didn’t get paid for it, but I have to share that the ultimate reward for me was sharing and hoping to teach others about lung disease and how difficult it can be to just breathe.
My friends, please let me know what you think. I would love your feedback.
Till next time!
Hope is essential!
Love you all,
Coach “Oxygen Man” Bob
Bob Rawlins, 61, of Medina, Ohio, is husband to Terese and father to their 16-year-old triplets, a soccer coach, a hospital volunteer, band dad and chaperone, and marketing guru. He uses a FreeStyle Comfort portable oxygen concentrator and a transportable oxygen concentrator for overnight travel.
If you have been prescribed oxygen therapy, learn more about CAIRE by visiting www.caireinc.com/patients or by calling 1-800-482-2473 to talk to an oxygen advisor. The contents of this blog post are not intended to substitute for professional medical advice.
Please consult your physician for personalized medical advice. When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.