Fibromyalgia Interview: @GONZ0HUNTER

I was quite humbled when @GONZ0HUNTER, a bloke with Fibro suggested I interview him for my site. It’s not something I had thought of doing, but it’s always good to share experiences. So here’s how the Fibromyalgia Interview went and if you would like to have your Chronic Illness story published here then let me know!

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Question 1: What was life like before you were diagnosed with your various conditions?

Life before me getting sick was very busy. I worked for a large satellite TV provider. I held different jobs there from working with our legislative branch, managing disaster response, producing large trade show acts, and finally being a television producer.

All of my jobs required travel and long hours. I really enjoyed the stress of it all. I used to enjoy working 20 hour days.

Question 2: What led up to you getting ill?

So 10 years ago I spent 4 weeks in the Katrina disaster zone. I was in an out of large warehouses to helping free pets from houses that had, mold, asbestos, petro chemicals, dead bodies, etc.

A few years after that I started getting really bad colds. At one point I had a fever of 103. I ended up having fevers everyday for 2 months. It all culminated in my losing my hearing from a sinus infection during a flight. My Doctor sent me to a ent surgeon. He did 4 sinus surgeries in a few months without being able to knock down my sinus infection.

I ended up finding a new surgeon who did another sinus surgery and took out my tonsils. A few days after that an artery broke in my throat. I had to have emergency surgery and woke up with Fibro.

Question 3: What led up to you getting ill?

After seeing 15 Doctors I was officially diagnosed just a year ago by a rheumatologist. A few of my Doctors thought it was Fibro but didn’t officially diagnose me.

>Why do you think various doctors didn’t diagnose, or didn’t want to diagnose you as having Fibromyalgia?

It started with my primary care doctor just being scared, she didn’t want to give me a disease, you know, that I would have for the rest my life. We talked about it at length. Fibro has no cure, no great treatment, and is a lifelong disease.

My rheumatologist decided that I definitely have Fibro. It’s just a somewhat more severe case than most.

Question 4: What does life look like now you’re battling Chronic Illness?

I was on leave for 6 months from work and finally had to part ways with my employer. Now I get to hang out with my son all day and try to get as much rest as I can. We had to make a lot of sacrifices, and I really miss travelling for work. I spend most days at home. Rarely leaving, I try once a week to go out to dinner or lunch somewhere.

My wife manages my life like a personal assistant. She manages my doctors, bills, prescriptions, lawyers, driving responsibilities, shopping, and everything else that I need to get done.

How has your wife adjusted to the change in your health?

My wife went from merely working and taking care of her son to now having to manage all my doctors, all of our bills, all my prescriptions and drive me anywhere I need to be. I used to travel at least three days a week, sometimes for two weeks at a time. Now I’m just around all the time because I’m not working.

She really is been amazing at managing everything. We definitely have difficulty sometimes because of the transition, but it’s made us a lot closer.

Question 5: What do you miss most about life before illness?

I miss working really long hours the most. I miss being in charge of lots of people, I miss yelling at work. I miss working with the best television production people in the world. I miss not being bored.

Question 6: What positives do you draw out of your conditions?

I get to spend a lot more time with my son now. It’s made me realize how amazing my wife is. I really took that for granted before I was sick. She has saved my life on multiple occasions. It is really humbled me as well having to depend on someone for everything. I’ve also become a lot more spiritual.

You say you have become more spiritual now. What form does that take and does it help you manage better?

So I grew up in a deeply religious family whose religion I didn’t really agree with, so after I turned 18 I really broke up with my parents because I couldn’t speak them due to their religion. After Katrina, I really saw the good that religion can do and now I’m looking at becoming a Catholic.

When you almost die or have the sicknesses it changes your perspective. You realize you can’t just do it on your own and you really need people, or anything that you can depend on.

Question 7: What would be your number 1 tip to people living with chronic illnesses?

My number one tip for people with chronic illnesses is to be prepared for every doctor visit. I carry an iPad app that has my entire medical history ready to go. I carry every lab test on an Excel spreadsheet. I try to have any other doctors notes that they’re going to need or any other documentation ready for every visit.

It costs so much money to visit a doctor that you want to be 100% prepared for it. A lot of times doctors just schedule lab tests, without checking to see if those have been done.

My second tip is to take your doctors very selectively. We have a set of rules that we follow when picking a doctor. We only select doctors who are younger, because these ones are open to new ideas and don’t try to diagnose just on what they see. We don’t go to doctors who ask what are the top two things I can fix today. We try to pick doctors who have great support staff but that’s not always available. Once we find a good doctor we stick with them. Every six months we rate the doctors to see if we need to make a change, if they give us a bad feeling we immediately fire them and find a new doctor.

If we feel like a doctor’s not listening to us they get fired. With all these rules though there are exceptions. For example my immunologist, he’s an older doctor but he’s the best in the business so we have to stay with him. He listens and has solved a lot of problems for us. Our rheumatologist doesn’t fit well in her care team because he is pretty’s anti-opioid. It’s taken a few visits with him to warm him up to the idea that I’ll probably be on opiates for the rest of my life.

Want to do an Interview for my Blog?

If you would like to have a Fibromyalgia Interview please get in touch or send me a tweet!