Still Sick, Even After the Mayo Clinic

Lately, when I think about killing myself, I try to remember Brazil.

I recently went on a week-long trip to the beautiful sea-side country, and although it was technically for work, I was able to experience plenty of amazing moments — moments I try to remember when I think about ending my life.

I try to remind myself that it was such an unexpected trip that came up out of the blue, and it was so incredible and magnificent, and if I had killed myself a few months ago like I wanted to, back when the pain was particularly bad, then I would have missed out on the whole thing. I would have never made it to Brazil.

From there, I try to remember that the rest of my life is still filled with so many incredible possibilities and ending it now would be a mistake.

These days, though, I’ve had to remind myself about Brazil more often than I’d like.

I just got back from a much anticipated visit to the (in)famous Mayo Clinic in Rochester, Minnesota.

It’s supposed to be THE place to go when you have things like excruciating random rib pain that you wake up with one day for no apparent reason. It’s supposed to be the hospital that puts all other hospitals to shame. The one that can diagnose the undiagnosable and cure the incurable. The very mecca of the chronically sick.

Except for me. Aside from the pretty buildings and the fancy tour guide facts on the shuttle bus ride between the hotel and the clinic, it ended up being pretty much just like any other doctor’s visit.

Which is exactly what I was afraid of.

I mean, sure, the doctor was nice enough. A strong Italian woman, she had the kind of fierce personality I often wish I could muster. With her relatively thick accent, she went over my medical history with a strikingly straightforward approach, saying things like, “Oh yes, you are on the Amitriptyline. It’s makes you fat.”

Oddly, that comment was among her more comforting words. I mean, at least she didn’t think it was because I was just a lazy slob, like everyone else did.

But, as we started to talk about the nitty gritty, I quickly realized that she wasn’t going to dig very deep into my pain. And in fact, she was just going to do what all the other doctors before her had done.

She concluded that she thought the pain was probably intercostal neuralgia, even though I’ve already had a test to show that it’s probably not intercostal neuralgia.

Then, she said the same thing all the doctors say, “We don’t know what caused it. We’ll probably never know what caused it. And we don’t know exactly how to cure it, but if we throw a bunch of different treatments at it, maybe something will work.”

After that, she sent me off for two days of peripheral nerve tests that had almost nothing to do with my pain — one of which literally electrocuted me for three minutes straight. Another burned the top of my left foot to test my pain tolerance. All of them came back normal.

In the end, her best piece of medical advice seemed to be to take off work and attend a three-week, outpatient pain clinic — which just made me feel like she had run out of ideas and was shipping me off to the place people go when they’ll never be cured. Also, who the heck can just take three weeks off work?

On Thursday evening, after all the tests and all the appointments were done, I reflected on the experience in the hotel hot tub, and I tried desperately to wrap my head around what was happening.

I had tried to mentally prepare for this outcome, to remind myself that nothing might come from this visit. But I also had still allowed myself to hope for more. And honestly, with so many people out there on social media rooting for me and writing messages on my Facebook wall about how they were praying I would be cured at Mayo, I somehow also felt like I was letting the whole world down.

For a half a second, I honestly thought about pretending that I had actually been cured at Mayo.

I could come back and tell everyone the news they so desperately wanted to hear. I could let my boss believe my health was no longer affecting my work, and I could date guys without worrying about whether or not they were secretly turned off by my pile of orange prescription bottles.

But then I remembered how sick I really am, and I realized that my plan wouldn’t work. I mean, how many days could I last at work without having to tell my boss I needed to sign off early and lay down? I can only fake so many episodes of the flu.

Which really only leaves me one option — I somehow have to deal with the fact that I’m just going to continue to be sick, at least for now.

But that’s where the suicidal thoughts start to creep back in. Because, if I’m being honest, looking at a life filled with unendurable pain seems too overwhelming to handle. And coming to grips with the fact that even THE Mayo Clinic couldn’t help me, makes me want to just give up on doctors and prescriptions and life in general.

But I try to keep reminding myself about Brazil. And about the palm trees, and the sound of the ocean waves, and the way the people I met there have left such a strong impression on my heart.

And I keep going. At least for now.

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7 Comments on Still Sick, Even After the Mayo Clinic

  1. David Fitz
    July 31, 2014 at 7:34 pm (8 years ago)

    I was on Amitriptyline for a while. It gave me painful boogers. Like it was stalagmites growing up there. Crazy nose bleeds!

    Reply
  2. Sarah H.
    August 13, 2014 at 3:43 am (8 years ago)

    You have not let anyone down. The Mayo Clinic let you down. I’ve heard many horror stories about that place. They can miss obvious diagnoses. They almost killed someone I know because the brain surgery they did on him was in the best interest of their research, not his health.
    I felt like I let everyone in the world down in February. I had my seventh surgery for severe endometriosis with a specialist in Dallas. And I still don’t feel better.
    After that I’ve come close to killing myself several times. The thoughts are there. My mind wants me to give up. Sometimes there is no way to talk yourself out of that. Just know that whatever is going on with your body is not your fault. The world has something better for you.

    Reply
  3. Kristi
    August 29, 2014 at 1:25 am (8 years ago)

    I have heard nothing but horror stories about Mayo. Sorry you had what sounds like a horrible experience. Sorry you had the emotional and mental breakdown in your head even though you said you didn’t want to have such high hopes. We get desperate and sometimes the only thing that keeps us going are high hopes. Maybe we can chat sometime. I was an RN prior to getting sick 10 years ago. Doctors now are rethinking my original diagnosis (which I have done the same) after all these years. Every new symptom I experience I ask my doc to draw certain labs or diagnostic tests. I go see any doctor that I feel I need to see. For every doctor I have seen, they find more things which leads me to more doctors. I finally discovered a gene mutation found by an Infectious Disease doc. And now I am seeing a Geneticist then end of September. But this little gene mutation has made me realize the weird symptoms I experience are not in my head!

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  4. Cass
    August 30, 2014 at 5:04 pm (8 years ago)

    I understand your pain… I have MS, and one of my main symptoms is neurogenic pain caused by plaques, or scar tissues, in my pons (all the nerves in your body pass through your pons). In my legs, this means that it feels like someone is pounding a medal rod down the middle of my bones. It is a deep, deep, boring pain, that is relentless and excruciating. I also have allodynia on my left side — arm and leg. This means that every little movement over my skin — my husbands hand rubbing my upper arm lovingly, my tee-shirt as I make even the slightest of movements, and even just the air from the car a/c — feels like someone has pulled all the layers of my skin back and is scrapping it with a fork. The allodynia also makes my entire left arm feel like the dentist just “hit a nerve”; this raw, electrical, achy yet also burning feeling travels through the very core of my arm, from my shoulder to where my fingers meet my palm. I also have the MS hug, which will awake me in the middle of the night in excruciating pain, causing me to scream and cry-out, as each breath I take feels like someone is rotating and thrusting the knife that is in my ribs. All this is in addition to the pain from severe muscle spasms in my entire back area, my legs, and my neck.. These spasms can happen out of the blue, like the ones in my neck when I’m just sitting on the couch, or with just a few steps (about 10 on a bad day) in my legs, and within the first 30 seconds in my back when doing anything with my arms while standing, like washing a dish in the kitchen sink, or washing my hair in the shower. These are not just “a little tightness”; these make my otherwise slightly chubby back turn rock hard.
    The ones in my back go from normal to maximum tightness (not over exaggerating) in 30 seconds. All of this is in addition to fibromyalgia and endometriosis. I know, it sounds unreal, but all of my diagnoses (which I know you wish so very bad to have…) have been confirmed by numerous doctors as I’ve moved over the past 20 years.
    So, I am so very grateful for your article about pain medicine. More people need to speak up about it and explain our position. And I know what it’s like to have hopes in the Mayo clinic, only to leave there hopeless. My first relapse of MS I went to the Mayo clinic in Rochester, only to be told I “may or may not have MS, and we’ll only know if you get sick again”. Twenty un-diagnosed years later, I was diagnosed (& confirmed twice) with MS, after having gotten so irreversibly sick that I had to stop working 4 years before finally getting a diagnosis. I had been chronically and consistently ill for 10 years before the diagnosis, with all my MS symptoms, including tremors and gait problems, being thrown into the “fibro trashcan”. So I also know what it’s like to be searching for a diagnosis, all the while being very, very sick.
    However, I have something I wish to say to you, and hope you don’t take it as lecturing you or in any bad way at all. It is well-intended from one “health-challenged” girl to another…
    See, the thing is, you *CAN* travel to Brazil. I could never, no matter how much I wanted to, travel to Brazil. Maybe, if my life literally depended on it, but it would put me in the hospital. And I’d been in a relapse from the stress in my body for 4 -6 months, and may have gained a symptom, such as paralysis, that would never leave, even after the relapse passed. My fatigue is so great that living in a house with three floors prevents me from changing my clothes, from answering my cell phone, or even refilling my glass of water. It can even mean I go an hour past my time to take my medicine because I can’t get up the stairs. I haven’t had my hair cut or colored since November of 2012; the energy and resulting pain of doing something “frivolous” like that is not an option. I used to be a vibrant professional woman, who even moved to europe to manage a department for a top -5 accounting firm. I cut and colored my hair every 6 weeks, showered and styled my hair and put a full face of makeup on every morning, before donning a lovely suit and pair of high heels. For the past 6 years, I have only nothing but one style of orthopedic type shoes. But I do have a choice between black and brown. I am not complaining, although it may sound that way. I’ve never written this down before, but I hope it helps you understand what day-to-day life is like, and I am VERY blessed to still be able to walk. And I am very blessed in many other ways, too. But I could never travel to Brazil, nor back to europe to see my very best friend in the world. Nor can I fly to Florida to go to Disneyworld with my husband. That flight would also be so unbelievably stressful on me, and i would never be able to handle Disney world.
    So, what I’m trying to tell you is that yes, having undiagnosed excruciating pain is almost unbareable at times. But like you said, remeber Brazil. You were able to go, and you were able to go on short notice. And you were sent there by your employer, who still thinks you have a skill worth paying for. Be grateful when you can, when the pain is not so overwhelming that all you can do is curl up in a ball on the couch and moan in pain. Be grateful during those other times, be so grateful for what you do have that, when it seems all you have is pain, that your gratitude will see you through it. And enjoy your abilities whenever you can, enjoy them enough for both of us. 🙂

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  5. Debbie
    September 25, 2014 at 5:26 pm (8 years ago)

    My 28 yr old daughter suffers with the same painful ribs as you do. I was wondering what the test is for intercostal neualgia? Sure sounds like that could be what u suffer from. I am so happy to see you being so honest about your pain. I too suffer with chronic pain every single day and take opioids. I hate all the controversy over these meds. We too in Canada are trying to keep up with the states and monitor these drugs. Seems you have to jump thru hoops to get the quality of life we all deserve. So not fair for those who really need them. After reading your blog I do wish your doctor would read it and see how you suffer and are undermedicated. You should not have to count out pills to make them last. You should be free to take what you need to have mobility and only you know what that is. thanks for putting yourself out there for you speak for a lot of us who quietly suffer and pretend all is well.

    Reply
  6. Brenda Alice Smith
    January 29, 2015 at 9:00 am (8 years ago)

    I am another failure for mayo mistakes. I left there with being more depressed about being ill, bankrupt after 3 -12 hours each way trips and hotel stays. I did get the ruptured disc fused the following week-they refused to even do a mri. I just needed their pain clinic and off narcotics to acceptable medication such as antidepressants and seizure meds. All with their own severe side effects. Who would not be depressed about being sick of being sick. Not to mention the herniated disc that ruptured while I was there. The autonomic nervous system problems to them were mild and not worth explaining to us. 4 years ago and I still remember the tears and disappointment of returning in worse shape rather than the prayed for cure. I am so sorry that your visit was not a success either. Blessings sweet friend for your words that touch my heart.

    Reply
  7. julie
    October 13, 2015 at 2:16 am (7 years ago)

    Hey they wanted my husband to go thru their pain rehab and you exactly right,!! who can take 3 weeks off of work to attend their stupid meetings?? When they dont know what you have they call if fibromyalgia. and we were not ready to give up and live with the pain so in 1998 we said no thanks to the pain rehab and to this day they are still offended by that and there are just too many residents who are bad and opinionated, The chief physicians are mosty good they dont read the patients chart and they show the arrogance well. And we live here.. when I was pregnant, I did not have insurance, and mayo being a non profit hospital told me to go somewhere else.. Then along comes Igor from Russia with a pituitary disorder, Mayo paid his way here along with his family paid for his medical care and on and on all so they could get some good PR… So you did nothing wrong,, there are alot of good doctors there, you just need to find the right one. Keep rejecting the bad ones til you get one you like,, its your right. Another bad experience is the after surgery care at the hopsitals. Some of the nurses are horrible, have no sense of care of another person.. they just want the prestige of working at Mayo,, which sucks by the way..I really dont see how they can be number 1… dont give up, there are still good drs out there

    Reply

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