What it’s like to be a woman in pain

Being in pain every day, all day, is hard. But when you’re a woman, there’s a whole extra layer to the situation that makes everything that much harder.

It’s not just the expected stuff, like being told by a doctor that your bra is too tight and that’s probably what’s causing the excruciating pain in your right ribs that’s so awful that you literally want to jab a knife into your side and rip the bones out.

Or, after you change your bra, being told by the same doctor to just “calm down” because you’re probably just stressing yourself out, and that’s what’s causing pain so severe that you have to stop mid-conversation multiple times a day and lay flat down on the floor because you just can’t bear the agony of standing up.

No, it’s the other stuff too. It’s the things you don’t expect.

Like being accused of being a sexual assault victim, because that’s the only thing the doctor can think of to explain why it hurts like the end of the world when someone touches your ribs.

Or having a male doctor get uncomfortable examining your ribs because GASP! your boobs are right above them. Didn’t he go to medical school? Has he never seen a cadaver? Would he be so shy if it was a male patient with chest pain?

And then there’s stuff that you can’t even be sure of.

Like did that male doctor just give me Aleve for my level-10 pain because he really thinks that’s going to help? Or did he just think that, as a woman, I was probably exaggerating?

And, did that other male doctor accuse me of being an amazing actress just trying to score pain meds because he does that to every patient he sees on opioids? Or did he do that because I was a wee woman?

There’s also the stuff that bothers you, because you’re a Type A woman.

Like how you suddenly have to ask for help for everything. How you have to literally ask people to drive you to work, and do your laundry and even go over to the dining room table and grab your medication because you’re in too much pain to do any of it yourself.

And how asking for help means giving up control. So suddenly your towels aren’t folded the right way, and you have no idea where your favorite yoga pants are, and you have no say in what flavor yogurt you eat because you’re way too sick to go to the grocery store yourself. And it makes you crazy, but you have no other choice but to let it all go.

Except when you don’t let it go, and you try to do it all anyway. And so you work until you drop, and then you go home and do all the housework, and then you go on a date with your boyfriend and you end up screaming in pain in the ER because you really can’t do it all any more. You can’t even do some of it.

Then, there’s the stuff you hate.

Like when your boyfriend pretends like he understands how much pain you’re in, but then has a totally different reaction when one of his male friends tells him he endured the same thing and it was excruciating. And suddenly your boyfriend is way more sympathetic.

Or when you get genuinely upset about an emotionally abusive situation at work, and your boss tells you that it’s probably just because you’re so moody from all those pain meds you’re on.

There’s also the stuff you hate to admit.

Like how, as a woman, it’s especially hard to endure the most common side effect of medication — weight gain. And how, you hate that so much of your own self-worth is wrapped up in how you look, even when you’re in so much pain that you literally want to kill yourself to make it stop. And how you keep taking the meds and gaining the weight because you have no choice, but you also, simultaneously, fill up with shame knowing that you no longer come anywhere close to society’s definition of beauty.

Or how you can no longer stand up long enough to shower and blow dry your hair every day, and so suddenly you find yourself going a full seven days without a shower. And you know people are totally judging you for it. And they are judging you all the more harshly because you are a woman, and women are supposed to put an effort into their appearance at all times.

Or worse, how you finally decide one day to endure the shower, and hold the blow dryer, and sit on the toilet seat cover so you can do your makeup, and you take 30 minute breaks between each step so that you don’t wear yourself out. And then you put on a nice outfit and you go out to Steak & Shake and you run into someone you know and they say, “Wow! Well, you certainly LOOK great!” implying somehow that you can’t really be that sick if you’re wearing pink lipstick.

And there’s also the stuff you don’t even want to think about.

Like how you’re only 30 years old, but you’re in chronic pain every single day, which doesn’t exactly make you a great catch. So will you ever really be able to have children? And can you even think about having a kid when you can’t even take care of yourself most days? And anyway how would you even carry a baby when you need seven different medications just to survive?

So yeah, being in pain is awful. And being a woman in pain is also awful — but for a whole bunch of extra reasons.

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Looking for God on the operating table

There I was, stomach down on the operating table, in only a hospital gown and my underwear, and I found myself doing the one thing I hadn’t sincerely done in months.

I was praying.

With my whole heart, my whole being, and my whole soul, I was saying the most earnest prayer I could remember saying in a long, long time.

“Dear God. Please, please, PLEASE be with me right now. Please, whatever happens, please do not let them hit a nerve. Please God. I could not handle it if that happened. Please God. You are the only one I can ask for help right now. I need you. I need this. Please help me.”

It was my second trip to the Mayo Clinic and I was in the midst of what was supposed to be a 10-minute epidural that had passed the hour mark. The original doctor had been unable to get the needle through my spine in my middle back, and another doctor had to be called in to consult.

Eventually, they decided to go through my lower back, but to get the medication in the right place, they had to thread a catheter tube up my spine — no easy task. They kept threading it to the left when it needed to go right, and so they had to keep pulling it back down my spine and out of my body and redoing it.

In case you’re wondering, it really hurts when they do that, and you can totally feel it.

Before the procedure, everyone I talked to, from the nurse who checked my blood pressure to the actual doctor slated to give me the epidural, had assured me seven ways from Sunday that this was going to be a quick and easy procedure.

They told me there was no reason to give me any of the sedative I had been given when I had undergone a similar procedure awhile back, because this one was just going to be so dog gone easy.

I should have known then that it wouldn’t be. But I nervously took them at their word.

Eventually though, as I heard the doctor tell his resident, “I’ve just never seen anything like this before,” I started to worry that this whole thing was going to be full of worst-case scenarios. One of which was that they could hit one of my nerves during the procedure, which could send a shooting pain down my leg, that, from what I could gather, would hurt like hell.

So, as more and more things went wrong, I lost more and more faith in the doctors poking me in the spine. And eventually, I turned to the only one you can turn to when there’s nobody else left to ask for help — God.

“I’m so sorry that we haven’t talked much in the last few months. I am so sorry that I haven’t been going to church. I swear, I am,” I prayed silently. “I just really need your help right now. Because I am going to freak the eff out if they hit my nerve. I’m telling you, I could not take that.”

Eventually, about 90 minutes after I first lay down on the table, they were done. The doctors had managed to get the medication into the right spot without hitting any of my nerves.

I could barely walk out of the room to where my clothes were, and it felt like someone had just stuck a bunch of needles into various parts of my back — mostly because they had.

All I could think about was that prayer though. I hadn’t prayed like that in such a long time.

So many people write how having a chronic illness strengthens their faith, how it brings them closer to God than they’ve ever been. But I have no idea how that happens. For me, it’s made me a little bit more of an atheist every day.

When I first got sick, before I was on any medications that helped at all, before I had any idea what might be happening to me, I would lay in bed at night, unable to fall asleep because of the pain, and I would literally cry out to God.

And in those moments, when the pain only got worse, He seemed so silent.

Then, when it became clear that I would have to resign my role as the youth leader at the church I was attending, I started to question whether this whole thing was somehow God’s way of telling me I wasn’t doing a good job leading the youth.

I know, I know, that’s probably not true. But when something like that happens to you, it’s impossible not to have those thoughts.

From there, I started to wonder how any God could ever let one of his children suffer the way I have.

And then, one night a few months ago, I was up all night in such severe pain that the next day the doctor gave me a shot of Dilaudid. Unfortunately, instead of relieving my pain, it promptly made me start vomiting uncontrollably. I literally threw up all night long, with barely enough time to catch my breath between each time.

It was the worst 48 hours of my entire life. And it was then that the questions of where God could possibly be during all of this really started to take root.

I really do believe that life with obscene chronic pain is the worst life imaginable, and I don’t understand how it could possibly lead anyone to have a closer relationship with God. For me, it has only made Him more and more distant.

Maybe I am angry or just confused. And maybe one day everything will become clear. But for now, I am in too much pain to make sense of the fact that a supposedly loving creator would let one of his creations endure such a thing.

And yet, there I was, on the operating table, praying with such a sincere heart that I barely recognized myself.

So I guess when it comes right down to it, I still want really want to believe. I need to.

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Why I Need Hydrocodone

Hello! My name is Crystal Lindell and I’m on opioids — specifically, morphine and hydrocodone.

I need these medications on a daily basis to help manage my chronic pain. And by “chronic pain” I mean daily pain so horrible that I literally want to kill myself. Daily pain that feels like someone literally took a razor blade to my rib bone, whacked me with a golf club and then dropped a car on my chest.

The morphine is time-released, so I take that every eight hours, every day, all day. But it isn’t always enough to control my chronic pain, so sometimes I also have to take hydrocodone pills to help ease something called “breakthrough” pain.

Recently, the U.S. Drug Enforcement Agency decided that the hydrocodone I take should be reclassified to a Schedule II drug. That means I can’t get a prescription for the drug from a nurse, or a nurse practitioner. I can only get it from a doctor. It also means that I have to have an actual hand-written prescription to give to the pharmacy — no more calling or faxing it in from the doctor.

A lot of people in chronic pain, myself included, are really upset about this. But, if you’re not enduring agonizing pain on a daily basis, I can understand why you might not get what all the fuss is about.

So, below are some common questions those who don’t have chronic pain usually ask about hydrocodone, as well as some answers. Hopefully this helps to clear some things up about the whole situation.

Why are you so upset about this?

I’m upset for few reasons. Personally, this means I now have to get my monthly hydrocodone prescription in the mail, which throws a bunch of new factors into the situation. (More on that later).

Also, those who live in rural areas and only have access to a nurse practitionerwill no longer be able to get prescription for the drug, regardless of how much they may need it.

But more generally, it’s also one more way that hydrocodone, and opioids in general, are being demonized by our society. For me, hydrocodone has been a life saver in the purest senses of the word.

It has helped me to keep my job, take regular showers, and even travel. Without it, I can assure you that I would be spending every day of my life in bed or on the couch. I see the medication as a miracle drug.

But as the DEA continues its fight against opioids in all forms, it not only gives the drug a bad name, it also gives its users a bad name — whether they’re a legitimate user like me, who only takes the recommended dose each day, or a drug addict or dealer who sells the pills for profit.

It also opens up the door for others to treat hydrocodone users as they would an addict or a dealer. Pharmacists already give opioid users the third-degree when they try to fill a prescription for morphine or other similar drugs. And some will even outright refuse to fill it, regardless of how much pain the patient is in.

The new regulations also will likely make doctors that much more gun shy about prescribing hydrocodone, which for many patients is the only path to any sort of relief. Those in pain shouldn’t be forced to endure a fight with the medical community to get the relief they need — the daily battle they’re having with their body is tiring enough.

If you take hydrocodone every day, aren’t you an addict?

No, I’m not. There’s a big difference between “addiction” and “dependence.” My body does have a dependence on the drug after being on it so long, and yes, that would make it hard to go off of it cold turkey.

However, if I was addicted, I would take it for the “high” it can give rather than the pain relief, and thus I’d likely take larger and larger doses each day, and run out sooner and sooner each month.

I personally stick to my recommended dose not only because I’m not “addicted,” but also because I need the pills on a daily basis to help me function. If I took the whole bottle on the first day, I’d spend the rest of the month sinking into the couch in pain and despair.

If you’re on an opioid like hydrocodone, shouldn’t you be seeing your doctor every month anyway? Can’t you just get the prescription then?

Actually, no, I don’t need to see my doctor every month. I have an ongoing chronic illness that has no foreseeable end.

I also have an ongoing relationship with my doctor. We often communicate via email and phone calls between visits, but unless there are any major changes in my health status, I don’t need to see him every 30 days.

Also, my condition is so rare that I have to be treated at a university hospital. However, I live in a small town, so the closest one is about two hours away. Driving such a long distance every 30 days wouldn’t just be impractical — it would be torture for my body.

And of course, there are many, many other patients out there in similar situations who are enduring long-term pain. Just like me, they need a monthly hydrocodone prescription, but they don’t need to see their doctor every single month.

Well is it really that big of a deal to have the prescription mailed to your house?

Yes, it is, for a few reasons. One, the mail doesn’t always get here when it should, meaning I could go into opioid withdrawal if there was a delay.

Two, my morphine prescription also has to be mailed to my house each month. In the past, if there were any delays caused by the mail and my morphine prescription didn’t get here on time, my doctor was able to phone in a hydrocodone prescription so I wouldn’t go into withdrawal. Now, I will no longer have that option.

If you have never gone through cold-turkey opioid withdrawal, the best way I can explain is this: It’s feels like you are literally having years of your life sucked out of the very bones of your body.

Can’t you just take a different medication? Why do you have to be on hydrocodone?

I’ve tried a bunch of other medications and none of them are as effective as hydrocodone at relieving the sudden bouts of strong pain I experience throughout the day.

But really, that doesn’t matter. All you need to know is that I’ve discussed it with my doctor, and he and I have agreed that it is the most effective medication with the fewest side effects for my health situation.

Think about it, if you were sick, isn’t that all you’d want to matter?

Aren’t thousands of people dying from opioid overdoses each year? Won’t this new law help with that?

You are right. A lot of people have died from opioid overdoses. Starting with 4,030 deaths in 1999, the number increased to 16,651 in 2010, according to the Centers for Disease Control.

I do feel genuine compassion for those who have died from drug overdoses as well as their families. I have had many personal experiences with loved ones dealing with drug addiction and I wouldn’t wish that on anyone.

But, I also feel genuine compassion for the 100 million Americans living each day with chronic pain.

Right now, the pendulum has swung really far in one direction, and the needs of those suffering with chronic, as well as short-term, pain are being ignored at the expense of drug addicts.

Also, it should be noted that suicide rates among those with chronic pain are significantly higher than the general population.

In fact, “White men, white women, and white worker compensation men with chronic pain in the age range of 35-64 years are twice, three, and three times as likely, respectively, as their counterparts in the general population to die by suicide,” according to a study in the U.S. National Library of Medicine.

That’s a pretty dramatic difference. But I can tell you from personal experience that the right medication can go a long way in giving someone the will to survive.

If pain patients really fell this way, why didn’t they voice their side of the story to the DEA?

Aside from the fact that it’s incredibly difficult to take on the DEA when you’re healthy, much less when you’re enduring chronic pain, it’s also been hard to get them to understand why anyone would want more access to a drug instead of less.

The anti-opioid community has done a great job getting their message out into the world — but just because they’re the loudest, doesn’t mean they’re right. Those of us suffering from daily, treacherous chronic pain may be quieter (we are dealing with daily pain after all), but we have a point to make too.

We just believe that if there are legal medications out there that can make a huge difference in our quality of life, that we should have access to them. And that access should only be dependent on a conversation with our doctor or nurse practitioner. No more, no less.

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I finally tried acupuncture

I promise you I went into that acupuncture appointment with an open mind.

I mean, I really wanted to like the guy. And I really wanted the ancient Chinese remedy to actually be a viable form of treatment for me.

I decided to arrange the appointment after getting a text from my best friend suggesting I try it. She was about the 27th person to recommend it, so I took it as a sign and Googled “acupuncture” + “the name of the closest city.”

I called the first place that came up.

They had the word “medical” in their name, so I figured that must be sort of legit. I gave the receptionist my full name, address, and insurance information and set up a morning appointment in two days.

My mom says it’s a bad sign when they can get you in that fast. But I was in so much pain that I convinced myself it was because they just cared so darn much.

When the fateful morning arrived, my mom drove me to the appointment.

They started with the same type of stuff every doctor starts with: 30 minutes worth of paperwork and asking if my grandpa’s cousin’s dog ever had glaucoma or heart disease, which was followed by a nurse and vitals.

Finally, after being there for about an hour, the doctor came in. He was friendly enough, and as I went through the crazy winding story of how I ended up in his office after waking up with random rib pain last year — with no known cause — I really did hope he’d be able to magically fix me.

He listened to all the details, proclaimed that he “gets lucky a lot,” and asked me do a urine test right then and there. About three minutes after I submitted the sample, he came back in and said it showed that I had “leaky gut.”

That’s about when the crazy started. He launched into a speech on how I needed to go on a very strict diet for the next three months, and take piles of supplements, which I could, of course, conveniently buy from him. That, combined with acupuncture, would probably fix me.

Except the diet wasn’t gluten-free or vegetarian or fat-free. It was literally:

  • No potato
  • No dairy
  • No beef
  • No pork
  • No coffee
  • No sugar
  • No wheat
  • And nothing in a bottle, box, can or jar.

So basically chicken, broccoli, and three cups of fruit a day.

The doctor assured me that this was going to help me lose some of the weight I’d gained from the medications. Which makes sense, because anytime you give up four major food groups, you’re bound to lose some weight.

He had a handout on the diet and everything, which made me think it was the same diet plan he gave to all of his new patients, regardless of their condition.

Oh, and of course, he said I needed to start taking myself off all the prescriptions I was currently on, a little at a time, every two days. Except, you know, it took me more than a year to find the right drug regimen, and without them I’m in complete agony, no matter how many supplements I take.

Then, before I even knew what was happening, he started an acupuncture session on me.

I don’t know how that crazy rumor started about how you’re not able to actually feel the acupuncture needles because they’re so small, but it’s a bunch of crap. Not only could I feel every single needle, I also was bleeding when they took them out.

After poking me with at least 15 needles all over my body, ranging from my calves to my forehead, he said I had to do deep breathing for 20 minutes and then a nurse would be by to take the needles out.

As I lay there, I tried to stay calm and focus on breathing in and out, but 20 minutes is a long time. I spent most of it dreaming about the beef and cheddar sandwiches my mom and I were going to get after the appointment at the nearby Arby’s. Man, I love their fries. So yeah, the diet part probably wasn’t for me.

After the needles were taken out, the nurse did a two-minute laser treatment on my right side. The laser was never explained to me and it didn’t do anything for me, but it didn’t hurt, so whatever.

All in all, after everything, I didn’t feel one ounce better than I had before I walked in the door. Even so, I still was planning to come back for another appointment. I mean, I could be open to multiple acupuncture sessions if that’s what it took.

But as I sat down to schedule my next visit, the nurse tried to sell me all the supplements I supposedly needed to get better. Although they didn’t have everything the doctor had recommended to me in stock, what they did have came to $200.

When I tried to tell the woman that I don’t just have $200 extra dollars, she seemed annoyed that I wasn’t taking my health seriously. And when I asked if there was just one important supplement I could buy, she replied, “They’re all really important and they all work together.”

That’s when I knew I wouldn’t be back.

I paid my $35 for the urine test that I didn’t need, and another $30 for the co-pay I calculated in my head — just to be sure I didn’t get any follow-up bills from the place. Then, I made a follow-up appointment that I had no intention of keeping.

I really do wish getting better was as simple as eating less dairy, taking $200 worth of supplements, and having 15 needles stuck throughout my body a few times a week. But after enduring this excruciating pain for as long as I have, I know better than to buy the snake oil.

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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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