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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Countdown to the Mayo Clinic

So I’m going to the Mayo Clinic in a little less than two weeks.

In 13 days I’ll be on my way to what many people in America consider to be the best hospital in the country.

It has taken me over a year to get in there. Apparently, when my original primary care doctor decided back in May, 2013 that he could no longer help me, I wasn’t quite in bad enough shape for the Mayo Clinic to prioritize my case.

I guess excruciating pain that literally makes you want to kill yourself isn’t the worst thing that can happen to you.

Every healthy person I tell about my upcoming appointment gets super excited. I can see it in their eyes that they believe I’m going to go there and come home five days later cured. It is the freaking MA-YO Clinic after all.

Those who’ve had their bodies betray them though, have a less optimistic view. The sick know better. They tell me how the Mayo Clinic failed them. Or how they went there and came home worse off than when they left. They tell me story after story about how the doctors there are just like all the other doctors who have let me down.

And so, I am only cautiously optimistic about the whole thing. Once in awhile, the little spark of hope I have left in my soul will flicker, and I’ll remember for a few seconds what it was like to be healthy. I’ll wish with all my heart that maybe, just maybe, the Mayo Clinic will live up to its reputation and cure me.

Maybe a doctor will see my case in a new light or they’ll have a special test I’ve never heard of that will diagnosis me on the spot. Or they’ll give me a new experimental treatment and it will actually work.

And I’ll pretend that I could come home and go right back to living my life — like I did before I woke up one day in February, 2013 with sudden, horrible pain in my right ribs that never went away. That maybe, just maybe, I could even wear a push-up bra again one day.

But those moments only last a few seconds. I spend way more time trying to prepare myself for the worst.

I keep telling my family that the doctors will probably spend an hour with me and proclaim they have no idea what’s wrong and send me on my way — the same as every other supposedly amazing specialist I’ve ever seen. And then we’ll just have to spend the rest of our week in Minnesota window shopping at the Mall of America.

Don’t worry though, I won’t be buying any big-ticket items. The trip is the big-ticket item. With the cost of gas, hotel rates and my family’s need to eat on a daily basis, this doctor’s visit isn’t going to be cheap. And it’s made all the more difficult to deal with seeing as how, like most sick people, I’m drowning in thousands of dollars in medical bills and expensive monthly prescription co-pays.

The problem is, as much as this illness has devastated me, without a diagnosis, it’s not like I can have a fundraiser. I’m not the 30-year-old young professional with something recognizable like cancer. No, I’m the girl who wakes up everyday feeling like she’s just been beaten up by a baseball bat and a truck. And nobody wants to donate to that girl.

So, I ended up dipping into my retirement savings to front the cost. Just a loan, but still. It’s one of those things every financial expert everywhere warns you against. Had they been in my situation, I think they would have done the same thing though.

I just hope it’s worth it.

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Five Things I Wish I Knew Sooner About Chronic Pain

I first woke up with horrible rib pain on February 3, 2013, the day of the Super Bowl.

By the next morning I was in the ER with a morphine IV. They completely misdiagnosed me at the hospital and then gave me medication they said would cure all that ails me. Except of course it didn’t.

And thus, I was thrust into an entirely different life than the one I had on February 2, 2013.

I had no idea how much my world had changed or how to deal with it. In fact, back then, I didn’t even know that I would be classified as someone with “chronic pain.” It took me months to figure out where to find the right support groups on Facebook.

I’ve learned a lot since then about how to cope with my situation. But I wish someone could have handed me a pamphlet back on that fateful day in the ER spelling some of it out for me, saving me the trouble of having to learn so much of it the hard way.

While that didn’t happen for me, that doesn’t mean you have to be in the dark about all the craziness that comes with this illness.

Below are five things I wish I’d known sooner about chronic pain.

1. Doctors are not gods

In fact, they aren’t even very smart sometimes. When I first got sick I went to the ER, where the doctor looked me straight in the eye and told me that a stomach ulcer was the only logical explanation for my symptoms. He was wrong. Then, I went to a family practitioner who told me I had Costochondritis. She was wrong too.

After that, I went to a doctor at a University Hospital. After I told him I had been enduring level 10 pain for weeks, he gave me prescription strength Aleve because he was too scared to give me anything stronger. Aleve for level 10 pain!

The list goes on, and on, and on. I kept searching and searching until I found a doctor I could trust. Thankfully, I have. He’s two hours away and I have to cross state lines to get to him, but it’s totally worth it. He’s experienced and he believes me when I say I’m in so much pain that I want to die. His visits are two-way conversations as opposed to a one-sided lecture.

In short, I had to fire a lot of doctors before I found a good one. Don’t be afraid to do the same.

2. You don’t have to take a shower every day

I seriously wish I had figured this one out way sooner. Showers are the type of thing that completely wipe me out and send me to lie on the couch in front of Netflix for hours to recover. Add in blow drying my hair and I’m basically done for the day.

When I first got sick I was so stressed about trying to follow our crazy American standards of cleanliness that I still tried to shower every day. Eventually, I realized that was basically killing me, so I started to do the every-other-day thing and now I’m on the twice-a-week plan.

Even after I made that life choice though, I still tried to keep up appearances on business trips because I am stupid. I’d wake up every morning, hop in the shower, blow dry my hair and do a full face of make-up. Then, I’d either end up having to spend most of the day recovering in my hotel room or popping tons of pain pills. Or both.

Thankfully, I’ve since learned that even on business trips, it’s all right to skip a few days. Like on my recent eight-day trip to Brazil. One of my survival techniques was showering only once every three days. I used lots of deodorant, perfume and dry shampoo; and then on the third day, when my hair was especially dirty, I just wore it up in a top knot.

My body had a lot more miles on it each day and nobody even seemed to notice. Or at least they didn’t say anything to my face.

To sum up, if showers make your body rage with pain, it is completely all right to skip them. Just don’t forget to buy some dry shampoo.

3. Sleeping pills save lives

When I first got sick, I was in such severe pain every single day that I couldn’t sleep through the night. The pain was like a huge claw that grabbed my ribs and woke me up in the middle of the night, or worse yet, wouldn’t let me fall asleep in the first place.

The thing about sleep though is that it’s kind of important. In fact, if you don’t get enough sleep, you go crazy — which I did. My body never got any down time, so the pain just ratcheted up every single day, and my brain never got any time to reset. I got severely depressed to the point that I was planning ways to kill myself. I was such a mess that I thought I wanted to die solely because of the pain, but it was actually the lack of sleep that was pulling me closer and closer to death.

With severe chronic pain, Tylenol PM may as well be Skittles. And so, I didn’t think there was anything out there that could help me. Until I told my pain specialist about the situation and he put me on Amitriptyline.

I mean, yeah, sure, that stuff knocks you out cold. But, on the up side, that stuff knocks you out cold.

After just two days of sleeping like a regular person, my suicidal thoughts drastically decreased and I was suddenly able to use my logic and reasoning skills again.

Since I’ve started taking the medication, I have skipped it a couple of times for various reasons, to disastrous results. On one particular occasion, I was between doctors and ran out, so I missed two nights. Just two nights. You wouldn’t think that would be such a big deal.

Well, it was. By the third day I was in so much pain that I ended up getting a shot of dilaudid from the doctor, which I had a reaction to. I then spent the entire next night throwing up repeatedly. It was the worst 72 hours of my life.

So, if you are having trouble sleeping, talk to your doctor about your options. Seriously.

4. Pain pills can give you the will to keep going

It took awhile for me to get on the right dose of the right pain pills. When I first got sick, I had no idea that doctors would be scared to give me the medications I needed or that there was any sort of controversy around opioids. I just assumed that, like with any other illness, I would get the care I needed.

Alas, that was not the case. Like I said before, at first they tried to give me anti-inflammatory medications, which did nothing for me. Then, when the doctors finally did put me on Narco, the dosage was so low that I thought the pills couldn’t help me. It wasn’t until I started doubling the dose that I realized relief was possible.

It makes me incredibly sad whenever I read that someone is trying to avoid opioids just for the sake of avoiding them. There is no reason to live a life enduring excruciating chronic pain every day, when modern medicine has come up with a way to put it at bay. Obviously, the pills won’t make you 100 percent, but for me they temper the pain enough to allow me to hold down my job and even go out sometimes.

And without them, I’m sure I would be dead by now. If you need pain pills, take pail pills.

5. You don’t have to accept crap

One of the things pain communities like to say over and over and over is that once you accept the situation you’ll find an inner peace. Except, I don’t buy it. I don’t think you have to accept the situation. I don’t think you have to accept the fact that your life is now just one, long string of pain or that you’ll have to endure such pain for the rest of your life. I don’t think anybody should accept that.

I have accepted the fact that I can no longer drive long distances, swim, wear bras with underwire, or sit up straight for more than 45 minutes at a time. I have accepted that my life is different for now. But only for now.

Because I cannot give up hoping that one day I will finally wake up pain free. And you shouldn’t give that up either. Nobody should.

 

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I Am Pro Zohydro

I am pro Zohydro, a new potent, hydrocodone-based, extended-release painkiller, because I am in so much pain, so much of the time.

I am pro Zohydro because there are so many days when I wake up and I’m literally in too much pain to open up a laptop and read my work emails. And I’m in too much pain to talk on the phone, watch TV, or take a shower.

Do you know what that’s like? To avoid taking a shower because you are in too much pain to stand up long enough to wash your hair? I do.

I am pro Zohydro because the pain on my right side shoots through me like a constant stream of agony and defeat. Because it feels like someone reached past my skin, and my blood vessels, and grabbed the last two bones in my right ribs and snapped them in half.

And somehow, at the same time, it feels like someone just dropped a cinder block on my chest and then whacked me with a baseball bat to make sure it hurt.

I am pro Zohydro because its sister drug Norco has helped me so much. It has given me moments of my life back. It has taken my pain away just enough for me to pretend that I might even be well.

It has allowed me to go to a Cubs games with my boyfriend, to go shopping with my sister and my mom, and to go to candy shows with my boss. It has allowed me to keep my job, take showers and, on particularly bad days, walk from the couch to the kitchen. It even kept me alive during my last mission trip as a youth leader. I wouldn’t trade that trip for my life.

I am pro Zohydro because my chronic pain has been like a vicious black alien that slithered out of the night sky and attached itself to my ribs, only to suck the life out of my body, a little more each day.

It has left me for dead, on the door steps of suicide, ready to end it all, and the only thing that has saved my life has been the pain pills from the merciful doctors who try to understand how horrible my chronic pain really is.

I am pro Zohydro because there’s a chance it could help me. There’s a chance it could give me a slice of my life back. And even if it can’t give me a slice of my life back, maybe it can give someone else a slice of their life back.

I am pro Zohydro because chronic pain really is that bad. Because I don’t just wake up feeling like I’ve been hit by semi-truck once in a while, the way people in the land of the well do when they have the flu, maybe once or twice year. For me, it’s not once in a while. It’s every day.

I can’t just call in sick to life whenever I feel like someone just stabbed me 27 times with a butcher knife. So, instead, every single day I have to pull myself out of the sheets, and lift off the covers, which tend to feel like they weigh 49 pounds, and I have to drag myself out of bed and face the world and try to function.

I have to live my life every single day, despite the fact that I’m literally in enough pain that I want to go to the emergency room all the time. But I know there is sometimes relief available. And that relief is opioid drugs. And if Zohydro is that drug for me or anyone else, I want them to have access to it.

I am pro Zohydro because 100 million Americans suffer from chronic pain and they deserve hope. They deserve advances in medicine. They deserve cutting-edge treatments, advocates and support. And they deserve new drugs just like anyone else suffering from any other medical condition.

I am pro Zohydro because it will help people. Yes, I worry about those who may become addicted to it. And yes, I even worry that I will be among them. But more than that, I worry that one day, in the dark of night, I will no longer be able to bear the insane amount of pain in my  ribs, grab a knife and slit my wrists, and finally find the relief I so desperately search for.

I am pro Zohydro because I would rather find that relief from a prescription.

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Gaining Weight While in Pain

I wish I could title this column, “How I Lost Weight While in Pain.”

I wish that’s what this was about. I wish I had already figured out how.

Unfortunately, all I have right now is the question. How the heck are you supposed to lose weight while dealing with chronic, excruciating pain on a daily basis?

See, the thing is, it’s not like the pain itself made me gain weight. I mean, yeah, soon after it started I gave up all physical activity unless I was running from zombies to save my life. But that alone didn’t equal a higher dress size. In fact, after about three months of laying on the couch in agony, I was pleasantly surprised to see on the scale at my neurologist’s office that my weight was only about four pounds higher than when everything started.

Alas, that’s also right around the time when I got put on every single nerve pain, opioid and regular pain medication that they make, all of which list “weight gain” as a possible side effect.

At first, I didn’t even notice that “weight gain” was right there on the list of possible things that could happen to me. And my silly doctors didn’t bother to take five seconds to say, “Hey, this might make you pack on the pounds.”

So I just started popping all the pills like candy and going about my business. And I swear to you, it was as if I woke up one day 50 pounds heavier.

I’m not even joking. That’s what happened. I gained 50 pounds in like five days. And suddenly none of my clothes fit, I hated how I looked in every photo, and on top of the whole horrible daily pain thing, I also suddenly had to deal with random crazy weight gain.

The problem is, the stupid pills actually do help me. I’m not going to go so far as to say they “work” because it’s not like I have my life back. But I will say that they allow me to live my life with an amount of pain that leaves me less suicidal than I was before I started taking the drugs. Plus, they allow me to continue working without crying in agony.

They do not, however, allow me to exercise in any way. Seriously. Even walking still makes me feel like I’m being stabbed. And don’t even start to say the word “yoga” because that crap might as well be called “twist and turn on a bed of nails” for what it does to my ribs.

The meds also make my feet swell up if I so much as walk a mile. Seriously. The doctor tried to tell me that was impossible, that my feet should only swell up if I’m eating a lot of salt or standing in one place, and it has nothing to do with the meds.

But I promise you that they swell up when I walk, even if I’m downing water and avoiding sodium. And it never happened even one time before I started taking six different prescription medications on a daily basis.

Of course, a lack of exercise alone isn’t enough to make me gain 50 pounds. For that, the medications have a special side effect: They induce hunger. And, now, despite the fact that I spent the first three decades of my life trying to eat only when I’m hungry, all that work is basically pointless. I’m always hungry.

Add to that the fact that I’m pretty sure the meds also slow down your metabolism — and it’s not just impossible for me to lose weight, it’s impossible for me to maintain my weight.

Of course, the world doesn’t know this. They don’t get the nuance. They have no idea that I’m struggling against all these factors and that I really do notice every single pound I gain. They just look at me, scan my body, see that I’m overweight, and judge away.

I can feel it in the eyes of friends and family. I constantly stress that everyone is talking about it the second I leave the room. And I wonder if the people I meet in my professional life are suddenly taking me less seriously.

Even doctors are guilty. I had one doctor who had no idea how to deal with my rib pain, but she did take my appointment as an opportunity to lecture me on my weight. Something about fruits and vegetables and finding an exercise that doesn’t hurt.

I wanted to scream, “IT WAS DOCTORS WHO MADE ME THIS WAY!’

I mean, yes, deep down, I know I’m not completely innocent in all of this. I know that the daily struggle to live through the chronic pain makes it that much more likely that I’ll reach for a chocolate bar or a can of Coke to cope.

But with so many other factors working against me, it’s like I’m doomed to see a higher number on the scale every week, regardless of whether I skip the pop or not.

So, here I am, 60 pounds heavier than I was before I got sick. I wear stretch leggings way too often, I focus in on my face for all my photos, and I have absolutely no idea what to do about it.

I will say though, that the only thing worse than gaining weight, is being in pain without pain pills.

So, alas, it looks like I’m stuck, at least for now.

 

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