Pills for Breakfast: Hold the Mayo

Pills for Breakfast: Hold the Mayo

I suppose there are a lot of reasons that I didn’t hesitate to cancel my appointment at the Mayo Clinic the very instant I was offered a work trip to Brazil the exact same week in May.

Yes, I had waited a full 12 months between application and appointment to get that doctor’s visit at the Mayo Clinic. And yes, once I had it marked down in my planner, it had become the source of hope that kept me going through the long, evil nights when the pain would try to kill me.

But when my boss randomly emailed me Thursday morning to say that a confectionery association in Brazil wanted to pay for me to travel to the South American country for a week, and then write about it, I said yes without thinking. I mean, sure, I pretended to list the pros and cons with my mom, my best friend and my boyfriend, but deep down my heart was already in Brazil.

450px-Mayo_Clinic_Rochester_Gonda_w_trees_3890pBack when I originally posted on Facebook that I had finally gotten in to Mayo, what many believe to be the most incredible hospital in the United States, the post got 67 likes and 27 comments in about five minutes.

People wrote things like, “Congratulations! Expect nothing but the best!” as though I was starting a new miracle drug that had a 95 percent chance of curing me instead of going in for a first-time appointment with a doctor I had never met.

They said things like, “That’s amazing!!” as if to imply I had already been cured, and “Good luck with this appointment, Crystal! I’ll be pulling for you!” as though I was about to go under the knife and come back up with some relief.

I was excited about the appointment too, but only in that hopeful-fatalistic way all chronic pain patients are about appointments with new doctors at new hospitals.

After all, I’ve already sought treatment at two university hospitals, only to be drugged and pushed out the door by every doctor I have met along the way.

So the way I saw it, even if the doctors at the Mayo Clinic were indeed the very best doctors in the world, the odds were still pretty high that they were just going to shrug their shoulders, increase my Lyrica dosage, and send me on my way.

Doesn’t a 7-day trip to Brazil sound so much more fun than that?

And anyway, I figured, I could just call the Mayo Clinic, tell them something super-duper important had come up and re-schedule. Like you would at any other doctor’s office ever invented.

Alas, the Mayo Clinic is apparently too cool to do things like re-schedule appointments. And, while it is true that the woman on the other end of the phone sounded like the type of person I could vent to over a cup of coffee, when she broke the news to me that they currently did not have any openings at all, her sweet voice didn’t make me hate her any less.

How is that even possible? How does a huge hospital like the Mayo Clinic not have any openings? At all? As in zero openings?

She tried to give me some line about how the June and July appointments weren’t open yet, but it didn’t really make sense. I mean, at the time it kind of did, but now, when I try to tell people that I just don’t have an appointment at the Mayo Clinic anymore, but DON’T WORRY, the June and July calendars weren’t open yet, they look at me like I’m insane.

The lady on the phone did swear to me that she would put my name and number right next to her computer and check every day for an opening and call the second there was one. However, I think that might have just been a response to me telling her that I was planning to call every day until there was an opening.

Even now, knowing that I wasn’t able to reschedule my appointment, and being left in a state of Mayo limbo, I’m still extremely content with my decision to go to Brazil instead.

I mean, come on, how many chances do you get to go to the doctor in your lifetime? And how many chances do you get to go to Brazil? Exactly.

Deep down, I think it’s also a little way of saying screw you to my pain. Of picking something else over my health because my health has been so effing awful to me over the last year. I get that it’s hard to explain that to people who expect that they’d do EVERYTHING they possibly could do get better if they were in my situation, wearing the same pajamas and sitting on the same couch every single day, praying for the pain to go away.

But until you live it, until it tries to kill you, you don’t really know what you’d do. Until the pain has left you for dead in the middle of the night, you can theorize all you’d like about how what you’d do in my situation, and feel all the righteous indignation you want as you lecture me in your head about how important it is to CHOOSE THY HEALTH above all. But you just don’t really know.

My health doesn’t seem to listen to reason these days, and the only thing a first-time appointment at the Mayo Clinic guarantees me is that I’ll have some blood work done. Brazil, on the other hand, offers the guarantee of at least one more stamp in my passport. And that’s enough of a trade for me.

As for how I’m planning to endure a 7-day trip around Brazil, a trip that includes traveling to a new city every single day, well that’s easy: opioids.

And if I ever do make it in to the Mayo Clinic, maybe the doctors there will finally be able to figure out what is causing the heinous pain that makes if feel like someone took a sledge hammer to my right ribs. And better yet, they’ll be able to magically cure it with a simple out-patient procedure.

But if that never happens, I’ll always have Brazil.

Crystal Lindell

Crystal Lindell

Crystal Lindell is journalist who lives in Byron, Illinois. She loves Taco Bell, watching “Burn Notice” episodes on Netflix and Snicker’s Bites. She has had pain in her right ribs since February 2013. It is currently undiagnosed.

Crystal writes about it on her blog, The Only Certainty is Bad Grammar.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 8 comments for this article
  1. Amber Rose Dullea at 9:00 am

    I believe your decision is the epitome of what it means to be Thriving with Pain. I hope your trip was wondrous and your pain level was lowered due to your enjoyment of Brazil!

  2. Jean Hazelwood at 10:30 am

    Absolutely the right choice. Mayo and Hopkins were both a big disappointment..if it’s too rare and no chance of a cure they will shuttle you right back out the door. Fired most all my docs and did the unthinkable, traveled out to New Mexico with my husband. It promised to be the “trip to Hell” with airline travel, high elevation, dehydration…etc..but a place I had always wanted to visit.
    Call it Providence, Fate or just dumb luck…once again my disease process did the unthinkable and leaped off the beaten path..going it’s own way without rhyme or reason. I felt a bit better out west….went again the next year…and moved here 6 months ago. Didn’t think I’d make it thru the move alive, but I did and it was worth it. I’m a bit better here. Just a bit. Still have migraines 15 + days per month and I’m severely limited in what I can do both physically & mentally…but I’m a BIT better and thrilled!!
    I continue to research and search for options. Most importantly I do not rely on any docs to help me, other than occasional meds (when they work). Live life to “your” fullest…we all know that tomorrow holds no promise. The docs/tests will always be there…being able to make it to Brazil is the best medicine possible!

  3. Julie Anna Clark-Bloodworth at 7:05 am

    Crystal, I am so proud of you for making the “hard decision”. I have not gone on trips or done things because I was going to see “the doctor/facility that is going to change my life” to be doubly disappointed. Disappointed that I didn’t do the fun thing combined with disappointment that the new doctor/facility didn’t have anything new or better to offer me. One thing about Chronic Pain is that it teaches us better than anything else that you should reach out with both hands to grasp life, love, and fun. Our lives are so limited already and will probably become more so as we get older and more of our bodies fail.
    So Congratulations on your trip to Brazil! And please take lots of photos to share with people that aren’t as brave as you to continue trying to live life to the fullest. Blessings.

  4. dave at 5:56 pm

    Robin- The sorry state of affairs in pain care has resulted from Capitalistic interest in a modernist culture. People gave over their power to experts and medicine and government to decide for them what access they could have to health care. As Jefferson wrote dependence breeds subservience and makes men(and women, of course) ripe for the designs of others.
    I know, some pain organizations- like the Overlapping Conditions Alliance spoke out in a report on pain care- and some of their members are now on NIH Advisory Council. So Im saying if people in pain speak out they have some chance of being heard. That is why I and others have written petitions on pain care- to give people a real voice in pain care. My petition is the : American Pain Rights Act”-
    http://www.petitiononline.com/painra/petition.html You can sign on if you like or sign onto other petitions on pain care- or write your own.
    Now is an ideal time for people in pain to demand to be heard- in a few years the debacle over opioids might be settled for better or worse and politicians may close their ears once again to people in pain. Strike now while the iron is hot and have your voice heard.

  5. Nancy L at 2:44 pm

    Congratulations Crystal, I believe you made the best choice for not only your health but for your happiness. You did not let pain stop you from taking a “once in a lifetime opportunity” the pain will wait, but you may never get a chance to see another Country and to see another culture. I hope you will share your experience with all of us. Maybe you will find out that their is a reason for you to go there. I believe that things like this just don’t happen every day and their is a reason that you are making this journey. I also wanted to share with you that one of the patients that goes to the same neurologist as I do and has some of the same health issues as I have did go to the Mayo clinic. They ran a bunch of labs, and other diagnostic tests and could not offer her any different treatment than she was already receiving, she felt that is was a huge disappointment as she had placed so much importance on just getting there. Unfortunately their is no easy answer to the complex treatment and reasons people have chronic pain. So I just wanted to wish you all the best and to enjoy your trip and to share with us when you return. Nancy

  6. Robin at 11:18 am

    Wow…I feel ya! I too have been told by ” friends (really?)” to find s specialist because that’s what they’d do. What a joke! When is someone going to stand up in front of the world and declare there are MANY suffering people in chronic pain that aren’t helped, ignored, treated like drug addicts, looked at as if “here’s another one of those…”! I’m sick of the government regulating what it thinks is best. I’m tired of the opioid talk and addiction….blah blah blah. I used to never take a pill for anything. Growing up we didn’t go to the doctor for everything. My mom would always say, “Take an aspirin or get over it.” I was climbing the professional ladder but now that has all stopped. I feel like an outcast from my family and some coworkers. I am tired of it all. BUT… I have to do my best to fake it over the phone or in public…which is now embarrassing because I have to go to places in a wheelchair. I don’t want people staring at me thinking how sad or the opposite… “What’s wrong with her now, she’s been ill for so long” in a condescending manner. I have a wonderful husband who believes me and is so angry in how many times I’ve been miss diagnosed or told the same old thing. People begin to not believe you anymore and this is what I’m tired of. I’m tired of agendas! This includes the government, politicians who think they what is right so they can add a little more cash to their fund “how nice”, doctors that are fine with opioids but can’t because of federal interference to help us “poor addicts”, and doctors that are against every opioid and the first thing they hand you are brochures..including a dvd…for the medically implanted pain pump or pain block using little spurts of electricity to fix your pain. I don’t want a band aid! I want an answer and a solution to add years to the rest of my life. I want to live pain free and I feel that as an American I have the right to do so. PLEASE, PLEASE SOMEWHERE…WILL DOCTORS HAVE STONES TO STAND UP AND DO SOMETHING? Do we need a “million man march” of chronic pain sufferers for someone to take us seriously. Mind we might be in rolling down the streets in wheelchairs, beds, or even having loved ones march in our place because we can’t. What is it going to take? It takes less time for people to cheat the welfare system or abuse it and yet get years of help. Don’t judge me on this because I specifically know many that do so. What has our country come to? If you have not been in pain, chronic pain 24/7, you can’t possibly understand SO QUIT THINKING YOU DO! Quit making decisions you know nothing about. Help those of us so we can get back to work and contribute to society instead of becoming one more burden on the government. No thank you but I have too much pride to become a parasite. Again…don’t you dare judge me! Thank God I’m a spiritual person and pray everyday for healing and at least know that if I leave this world sooner than I plan I’m going to be with the Lord in Heaven! Can I get an Amen to any of this?

  7. Former Mayo Patient at 10:46 am

    Let me just say this, as a former Mayo patient, you made the right choice!
    They will run you tiresely from one end of the campus to the other, test after test…
    Then at your final appointment they will tell you absolutely nothing more than you already know. Demean & humiliate you with repeating what you have been told countless other times. Trust me their labs aren’t any more sophisticated than anyone else’s! They will not do any miraculous testing, or even a simple test that other doctors have suggested. Mayo Clinic has their way and no one else’s way is right!
    Then they will push their 3-4 week pain management program, that by the way is done as an out patient. So you’ll have the added expense of a hotel for 3-4 weeks to ‘learn’ what you already know. Which is how to take care if yourself! Oh, and charge thousands of dollars to your insurance company for you to ‘live with chronic pain.’
    It’s very evident to me that you already know these ‘tools’ they will teach you. You have made the right choice to go to Brazil! Live, experience new things, have a life!
    Sure, maybe someday you’ll want to go to the Mayo Clinic, and maybe, just maybe you’ll be different than the rest of us who’ve endured their torture. Chances are you will have more success sticking with the doctors you have already seen, are familure with you and your pain. It could always ‘just be chronic pain’ * sigh
    Or maybe someday your blood will show something else; something more for your current doctors to work with.
    All in all, it comes down to this. Be kind to yourself, mentally and physically. Enjoy these rare opportunities you have been given!
    I wish you happiness in all your adventures!