Grit with Glitter

Over the last 12 years, as I have gone through one health crisis after another, I had to learn how to be what I call a “professional patient.” I became an expert in how to navigate the system and advocate for myself. I learned to carry around a folder of my records, scans, and pathology reports from one doctor to the other to try and get something close to comprehensive care.

And I don’t do normal – I always have some bizarre complication that requires a lot of specialists. And they don’t know what to do with me, so I go through months of appointments, tests, and trial and error (involving invasive procedures and medicines with horrible side effects.)

Then I would watch House and think…that is the dream. Where do I go find a ruggedly-handsome doctor who may be an absolute jerk but whose whole thing is solving complicated medical mysteries?

As my last few posts have described, I am currently in the middle of a new episode (see how I used a TV show pun there?) So far, no doctor in Dallas has ever seen my particular combination of conditions (read Not My First Rodeo to catch up.) A few weeks ago, I had a follow-up with my surgeon and he said that he wanted me to heal for a month and then he would do another surgery to hopefully close this fistula for good.

Problem is, he couldn’t tell me what kind of surgery that might be. He described 4 options with vastly different outcomes and healing times and then said that he had no way of knowing which it would be until he “got in there” because he had never treated, or even heard of a patient with an HS fistula endangering a j-pouch.

So I went rogue. I discovered that that the Mayo Clinic in Phoenix has both the only specialty HS clinic in the country AND one of the top colon & rectal surgery departments and I made a call.

The woman I spoke to said to fax my medical records, but cautioned me that it would be at least 14 days before a doctor could review them and with the holidays it could be even longer. Then depending on the clinic I could be looking at a 3-6 month wait for a first appointment.

I got a call back in less than 24 hours with multiple appointments set up for me starting January 8th! So that means tomorrow evening I leave for Phoenix to spend between 3 and 5 days at the clinic seeing all the specialists I need, getting all the tests, and then… the doctors will sit down and talk about my case and come up with a plan. Together.

This may be an extremely niche flex, but The Mayo Clinic saw my records and jumped at the chance to get me in because I am basically a medical complication RockStar!

So, this week I will basically be in a waiting room, doctor’s office, scanning machine, or maybe even getting some acupuncture or medical massage (also departments at Mayo.) If I have some extra time, I may indulge my inner “posh hippie” and go to some crystal shops or get a healing sound bath while I am there.

And all week I have been saying that this is like my version of Disneyland- I don’t mind doctors and tests if it means that I get answers. I am genuinely excited to go to a place where I can finally have the type of care I have always dreamed of!

Oh and by the way, my husband is currently working in Phoenix 4-5 days a week.

Yep, that’s right. His new job, where he is put up in corporate housing while there, happens to be in the only place in the country that has a department dedicated to the very rare condition that I have.

So he will come with me if I need help (my mom is taking care of the girls) and I will be getting my best possible shot at a resolution for this extremely painful thing that has seriously affected my quality of life for almost 8 months.

And that is kind of like a dream come true…

If you want to continue to follow my journey, I will be sharing my adventures in Arizona and throughout this new medical adventure here and on my social channels.

As always, if you are inspired by any of my content, please consider donating to the non-profit organization I started with a mission of caring for kids so families can access childcare.