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When I Found 'Drug-Seeking Behaviors' Listed on My Discharge Papers

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Now that it’s been confirmed Prince’s death was caused by an overdose of pain meds, it really feels timely and prudent to make some sort of response, especially as someone who has chronic pain and who relies on pain meds to function every day.

My pain – and especially my pain meds – is not something I talk about much with people outside of my “sick friend” community.

These days there seems to be this huge stigma attached to narcotic pain meds and those of us who are prescribed them. I’m going to step outside of my comfort zone for a moment here in this space and tell you just a small slice of what I’ve experienced: being pigeonholed and made to feel ashamed and dependent and somehow less-than others, all because I am prescribed narcotic pain meds for my chronic pain.

I want you to know that I’ve tried other types of drugs for pain, too. I’ve tried different types of anti-depressants, which made me feel groggy and like I was outside of myself. I tried a couple of drugs in the class of Gabapentin, which made me dissociative and combative. Gabapentin itself caused me to pass out on the toilet in the middle of the night and hit my head on the stone trim of my bathtub. That was not fun. I had a naso-jejunal
feeding tube at that time, and while I was passed out on my side, my feeding tube began to retract out of my small intestine and coil up into my stomach, so that incident ended up being filled with more peril and problems than were necessary. I’ve tried everything I can think of – and, to this point, everything my doctors can think of – to not have to be on narcotics for pain. But, ironically, the narcotic I’m on has been the safest drug for me with the least amount of side effects.

Yet still, the medical community often makes me feel as though I am either already abusing narcotics, or as though I may be, at any moment, tip-toeing down the road to abuse simply because I’m being prescribed them.

That makes me sad.

Unfortunately, I’ve had to spend a lot of time in the hospital lately, and after a recent five-day stay, I was reading through my discharge paperwork after I came home, when I came across the supposed reasons why they had admitted me into the hospital for that visit.

Alongside diagnoses such as “hypokalemia,” and “essential hypertension,” and “intractable nausea and vomiting,” were the types of diagnoses someone like me hopes never to see: things like “drug-seeking behavior,” and “drug abuse,” and “narcotic abuse, continuous.”

Even now, even though I know those words are on that piece of paper, I am shocked to see them there. I am shocked someone thought those things about me and put them there, and selfie of author to have made them think those things about me.

There are tears in my eyes while I’m typing out these words to you, because I am just so confused about how someone could view me so wrongly. Then when I see the doctor’s name next to those diagnoses and realize it is someone who I have not only never seen, but also never spoken to, and someone who doesn’t know me at all except as an electronic chart, I can see how they might make such a misunderstanding. But that still doesn’t give them the right to make that sort of snap judgment about someone like me – the sort of snap judgment that could ruin my medical chart and my life.

I did follow up on those diagnoses with that hospital with a nice lady who seemed eager to help. In the end, I received a somewhat vague apology from her, explaining that when I had been admitted into the hospital through the ER for that stay in the first place, they had asked me if I felt well enough to stay or to go home, and I had told them that I did not feel well enough to go home, and this is often categorized as “drug-seeking behavior.” Which confuses me because I was not aware the patient ever makes a final decision as to whether she should be admitted, and I don’t understand how telling them I didn’t feel well enough to go home should be considered drug-seeking.

It seems to me the list of drug-seeking behaviors is getting longer and beginning to encompass actions that – to my mind, anyway – have nothing to do with seeking drugs.

In the end, I was informed those diagnoses would be removed from my file, but the fact that they were ever there in the first place is saddening and demoralizing. Because I know the truth, friends, and the truth is that I am not an addict or a drug-seeker. I am simply in pain, and I have a wonderful family doctor who prescribes my pain meds so I can use them thoughtfully and carefully. Unfortunately, society and the medical community has made me something else.

Editor’s note: This post is based off an individual’s experience and should not be taken as medical advice. Please see a medical professional before starting or stopping any medication.

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The 3 Most Important Words You Can Say to a Loved One With Chronic Pain

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“People need to be encouraged. People need to be reminded of how wonderful they are.  People need to be believed in — told they are brave and smart and capable of accomplishing all the dreams they dream and more.  Remind each other of this.” — Stacey Jean Speer

People generally do not need a lot from others to feel worthy and loved. I believe what people need is quite simple, to be honest: to be recognized, encouraged and believed in.  We complicate the process of trying to figure out what our loved ones (whether they have chronic pain or not) need from us and start buying gifts, reading books on how to show love and over-thinking what we could do better or should be doing better to love another. Stop. I do not care what people say — money does not buy love, but words, encouragement and belief do.

Similar to what Maya Angelou once expressed, people will forget what you bought them, people will forget what you did for them but people will never forget how you made them feelI believe the three most important words you can tell a loved one with an invisible illness are: I believe you. One cannot see air, and yet we breathe; one cannot see their higher being, and yet they pray; one has no idea what heaven looks like, and yet they might do what they believe they should in order to get there when they pass. I believe the most incredible things in the world cannot be seen nor heard — they are just there. Chronic pain is usually invisible, but that doesn’t mean people are making up being in pain.

You are a loved one and may have no idea what chronic pain feels like, and you may not have the answers and most likely cannot cure your loved one. However, you can give them what they might need most: love, belief, encouragement and daily reminders of how loved they are.

When I first started managing chronic pain naturally and accepted it into my life instead of fighting it, I was actually given “flowers for chronic pain.” The people I love were so proud of me and could not believe the work I put into managing this disease. Years go by and people forget: invisible is a very hard word. Of course people forget; I do not talk about chronic pain, I look healthy on the outside and I am following all the dreams I set out for myself, but I still fight every day. I still have chronic pain, and even those of us who are at great points in their journey with chronic pain need to be encouraged and reminded of how proud their loved ones are of them.

Words are a funny thing, and the most powerful of all things in my opinion. Some words can hurt you to the core and are never forgotten, while others bring you such peace and almost a sigh of relief, like, “Ah, I am not forgotten. I am loved and the people I love most still know how hard I am fighting and believe in me.”

Everyone needs/wants encouragement from the people they love the most. Everyone wants to be believed in. Yes, most importantly, you must love yourself and believe in yourself, but I do believe we all still need that to some degree from our loved ones. Anyone who has gone through fertility issues knows one of the worst possible things to hear is, “Maybe kids just were not in the cards for you” or “One and done, just be happy with what you have.” When a person says something like that, it can feel like they are crushing your dreams and do not believe in you, and that can feel just like it does when a person doesn’t believe your invisible illness. Today is my final procedure where they put two healthy embryos back into me and we wait to see those pink lines: one or two? I have total faith my IVF process worked and I will be pregnant this month, but you know what? If I am not, I try again. I do not give up on my dreams, and just like my experience with chronic pain, all I want is to be believed in.

My two dreams are a family with children and to make writing/helping people with chronic pain my career, and I believe in myself. We all have different dreams, and I may not understand your dream and you may not understand mine. If someone told me all they ever wanted to be when they grew up was a lawyer, I would not understand this dream at all as it is far from one of my passions, but I would believe in them. John Lennon said, “All you need is love.” He is absolutely right, but with love comes belief, encouragement and support.

The author with her daughter at the beach

Follow this journey on No One Gets Flowers for Chronic Pain.

The Mighty is asking the following: What’s one thing loved ones might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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The Daily Struggle With Chronic Illness and ‘Chronic’ Guilt

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erin kissing her husband in a park
Erin and her husband.

It’s been three years now that I’ve been living with chronic pain and invisible illnesses. It’s taken me the entire three years to come to terms that my life will never be the same, and it’s something I still struggle with every day. What bothers me most, what is usually on my mind, is the guilt I feel.

We are a military family who recently moved from the South to the Pacific Northwest. We’ve lived here 10 months now, and we have not been able to see any local sights, visit Seattle for the day, or do any of the things I see my friends here doing, because of me. I’d love to spend the day in Seattle, playing tourist, but I know I can’t physically do it. I would use half my “spoons” just getting out of bed, getting dressed, and for the car ride. I see friends going on hikes in the beautiful scenery here, and I feel guilty I can’t say one Saturday morning to my husband and son, “Let’s go for a hike!”

Erin with her son at a baseball game
Erin with her son.

What makes me feel most guilty is what I feel I am missing out on with my family. My son plays high school baseball, and there are some away games I have to miss because I can’t drive or even ride in the car that long without knowing I will be in a lot of pain and also paying for it the next day. I feel guilty that my husband, who works 12+ hours most days, has to come home and cook supper, and do the dishes, and in general, clean the house. When he asks me if I want to go out to eat on a Friday night, I want to say yes so very badly, but by that time of the day, I’m lucky to have one spoon left to use, if I can even get off the couch. I can see the disappointment in his eyes, but being the man he is, doesn’t express it to me so as to not make me feel bad about not being able to go out.

I feel guilty when I have to cancel plans with friends. I’ve learned to try to not make plans, but as a volunteer, there are certain things I have to attend, and I enjoy it. There are meetings and functions I sometimes have to miss because of pain or exhaustion. I want to be there for all of my fellow military wives and their husbands at promotions, ceremonies, etc., but sometimes it’s just not possible.

Will I ever be able to rid myself of this guilt? I don’t know. I want to be a super mom and wife, a good friend, a volunteer my fellow military wives can count on, and to be proud of what I’m able to do, instead of what I’m not able to do. Before my chronic pain, one day I decided that having a positive outlook on life was much easier than being negative all the time, and it really did change my way of thinking. It made me happier in all facets of life.

Maybe now is my time to let go of the guilt.

No, not maybe.

It is the time to let it go.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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The Friendships I Never Expected to Lose Because of My Chronic Pain

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Chronic pain turned my life upside-down and inside-out. I had to give up my rock climbing, skydiving and whitewater rafting. I cried as I signed the paperwork to sell my motorcycle. Seeing anyone dancing is a stab in the heart of intense longing. Even keeping up with work became a challenge, whereas it was once a joy. Chronic pain stole my life — one I worked very hard to build. But you know what? These are predictable losses when you spend the majority of your time in bed trying not to scream, hoping you will just pass out and maybe, just maybe, get a break. Yep, it was predictable that many of my hobbies had to go. What I didn’t see coming was how many friends it would cost me.

When you are in severe pain, you might not be the most social person in the world. Pain brings you down to a pinpoint focus aimed at finding some relief — any relief. So when a friend calls to ask if I want to come hang out and have dinner, like we have for the last 10 years, I have no choice but to decline, even as I long for a margarita, some good Mexican food and hours of girl talk and laughter. Of course, I want to go. I want that little slice normality more than anything. However, drinks and laughter aren’t what they used to be. Instead, it means I have to watch my meds so I can drive and would be relegated to a virgin margarita. I would have to set a place at the table for my pain because it was coming, invited or not, and it’s a noisy and demanding companion. My pain would be so loud that I would have trouble hearing the girl talk, miss all the laughter and to top it all off,  after all that effort, I would pay for it later.

With all this in mind, when the calls, texts, or emails come in I become very selective about what invitation I accept, but it is not what you think. I haven’t ranked my friends in order of importance, though I have stopped maintaining acquaintances. My decision to stay or go has more to do with what the activity is, how long of a drive, how many people, do I have places I can rest, and if I get into trouble am I somewhere safe and with someone I trust. It’s a lot to calculate and fewer and fewer situations met my needs. So over time I accept fewer and fewer invitations, then, of course, the invitations stop coming in. It’s a sad thing to happen, but I understood. People get sick of hearing no.

I get it, I really do, but what I didn’t expect was for some of my friends to turn on me. Some people didn’t just stop calling; instead, they took the time out of their day to attack me. I was told how I changed and how awful I am now. I was told I was selfish. I was told I was so much less than the person I used to be. I was attacked in person, on the phone, and on the internet. I experienced cruelty like I never had in my life before, and this was all happening when I was already struggling to simply survive. It was a day-by-day process and when the attacks started I was caught completely off guard. I had been pretty much bedridden for almost a year and could not for the life of me figure when or where I could have possibly offended these people so terribly. Most of them I hadn’t seen at all in that time. Everyone knew I was sick, so they knew I wasn’t just being a jerk. Didn’t they? What did I do? And when on earth did I possibly have the chance to do it?

I was devastated. I was in physical pain all the time, but this was a whole other kind of pain. One on top of the other was agonizing. Everything hurt. The world seemed so wrong, not at all what I had previously believed it to be. It was a cruel and angry place. Even though I backed away from everyone that was angry with me, the attacks continued for some time after. I never did figure out what I had done to some of them. I’m not entirely sure they even know. Before all this I had a lot of faith in the basic goodness in people. This experience was traumatic enough to alter that. Completely.  Now I expect the worst so I can be pleasantly surprised instead of blindsided.

When I started to talk to other people who had a severe illness, they had very similar stories and it was quite clear they were just as hurt by it. I’m not sure what brings this behavior on. I guess it is another side effect of severe and chronic illness. My best guess is that some people have trouble facing mortality and being your friend is a little too real for them to handle. Maybe they don’t want to deal with your new limitations, so they kill the relationship. Why it has to be done so violently, I’ll never know.

So if you find yourself attacked by people you believed would support you, just know you’re not alone. This seems, unfortunately, par for the course. There are other people out in the world that will accept you as you are and be a real friend. You just have to find them.

Follow this journey on Then Everything Changed.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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'What Does Love Feel Like, Mommy?'

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author's 4-year-old
Three days ago my daughter, who just recently turned 4, asked me one of the most difficult questions anyone has ever asked me: “Mommy, what does love feel like?”

We were driving home, and I was lost in thought and completely taken aback. I always try to answer her questions, even when I do not truly know the answers. But I can’t look in a book or browse the internet for questions/answers regarding love. I knew I had to respond and yet could only think of one word: safe.

It would be easier to answer such a huge yet simple question if Kayci was about 10 years older than she is, but she’s not your average toddler in any way, shape or form. I’m not sure I even understood the deepest feeling of love until she was born.

So I did what all adults do when they do not know how to answer a question: I answered a question with a question (don’t you just hate that?). I asked her, “How do you know you love Mommy?” She answered much more quickly than I had anticipated. “That is silly, Mommy. Of course I love you. You take care of me, are funny, and I don’t know I just love you.”

She kept pressing me for my answer. I finally surrendered and babbled: “Love is something that is hard to put into words. Mommy cannot imagine life without you. That thought is very scary because I love you so much. I think love is feeling safe and important and knowing you are loved enough to love yourself. I think you and Mommy love music so much because it puts into words what we cannot say.”

Fast forward to the next day when I was the lucky one to get the stomach virus going around. I awoke around midnight at the sound of my daughter’s voice calling me. I stood up and realized I was dizzy beyond belief. It was difficult to walk. However, my daughter needed me (love), and love sometimes means doing things you do not want to do. As I walked down the hallway I became more and more dizzy until I fell, literally, in front of our bathroom and then began vomiting everywhere. I was scared. I awoke the next morning with multiple bruises and unable to get out of bed.

My dad, who has always made me feel safe, was at our home within the hour, playing with Kayci and making me toast. I slept for the following 24 hours — that is sick. I never sleep during the day.

Our daughter has her first dance recital in less than a month, and yesterday was the last day to buy tickets for the show. I felt such guilt at the thought of not taking her to dance — or worse not buying tickets to her recital. Call it a mother’s strength, or call it love, but somehow I managed to get her dressed in her hot pink tutu, feed her and get her to dance class on time.

Her friend’s parents took one look at me and said,”What happened to you? You should be in bed. How did you  even drive here?”  Without thinking, I simply stated: “Love. I would do anything for my daughter.”

That is when I remembered the question, “What does love feel like?” There are so many different kinds of love: someone’s first love, love between two people who have been together for 50 years and as much as they get on one another nerves they cannot imagine a life without the other; there is the love between siblings, friends, and then the love a parent has for their child. Love has different feelings and can be amazing and filled with joy, and at times love can be scary and difficult.

We all have different ways we see and view love. I feel that love is feeling safe with another person. Chronic pain taught me who truly loved me and who did not.

If you love someone, you just know it; there is not a way to explain the feeling. As scary and difficult as love can be, it’s the most magical feeling in the world.

If you love someone who has chronic pain, they do not need you to fix them or even find the right cure or medication. They need your love. It really is that simple. The person with chronic pain or any invisible illness needs to know they are loved and safe. I will repeat the three most important words one can say to someone who has chronic pain: “I believe you.”

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

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12 Things I Wish My Friends Understood About My Life With Chronic Pain

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Not being able to go to school, no parties, medications, hospital appointments — all these things are a part of my normal day living with chronic pain.

I can’t help it. It’s not my fault I have chronic pain, and a lot of the time what I need to get through the toughest days are my friends. Sometimes, though, my friends don’t understand that just because I’ve been going through this for two years now doesn’t mean it gets any easier!

Here are 12 things I wish my friends knew and understood about my life with chronic pain.

1. I’m still the same person I was before all this happened.

Yes, I may now use a wheelchair and crutches and spend a majority of my time in the hospital, but I’m still the same person who has been best friends with you since playschool! Please don’t treat me like a different person.

2. I can still text and talk on the phone.

I may not always be up for a long conversation, but most of the time I’d love to hear from you. Simply hearing the gossip from school would make my day!

3. It’s OK to ask how I’m doing.

I’d actually appreciate to know that you care. I may rant or cry about complications, doctors or hospital stays but just to have you listen to me and give me a hug when I need one means the world to me.

4. Invite me out places with you.

I may not always be able to accept, but if you give me a few days notice I can save up my energy. I understand it’s annoying when I cancel plans last-minute, but even just to come over for a cup of tea and watch a movie makes me feel less isolated.

5. I know I’m not a “normal teenager,” but I try my hardest.

I know that I spend more time in the hospital than at school, but when I do manage to get to school please don’t make a big deal of it. Just treat me like everyone else. All I want is to fit in and be like you.

So next time you’re getting ready for a disco, let me know. I may not be able to go out, but I’d even enjoy just to be there, helping you do each others’ hair and makeup and enjoying the company.

6. When I can’t go to school, I’m not at home being lazy.

Most people think on days I don’t go to school I’m at home relaxing, enjoying life or avoiding a math test. But the truth is, on these days I can’t get out of bed with the pain! I’m usually in bed crying, ringing my consultant for an emergency appointment or trying anything that might ease the pain. I would do anything to be well enough to go to school.

7. I still love football!

I’ve played Gaelic football since I was 5 years old and the fact that I may never play again breaks my heart, but it doesn’t mean that I’ve lost my love for the game! Do talk to me about the game that was on at the weekend — don’t think I never want to hear or see the game again. It’s been a huge part of life so far and always will be. Wether I’m playing on the field with you or being the team’s water girl, I’ll always love football!

8. I tell you everything — well, nearly everything…

I love talking to you and having someone to talk to when I’m scared or worried, but I don’t tell you everything because I don’t want to scare you. Like that time after surgery I stopped breathing properly, or how I needed to relearn how to control my bowel and bladder. I didn’t want to scare you and quite simply I was embarrassed! I hated being connected to wires and drips and having everyone do everything for me. I felt like a little child and couldn’t bring myself to tell you that everything wasn’t OK. So if I’m ever upset and you can’t figure out why, remember I may not be telling you every little detail.

9. I’m a professional at wearing fake smiles. 

I get up, get ready for school and put on my best fake smile. Like how you put on your jacket everyday, I put on my smile. It helps me stay positive and makes it easier and less awkward for you if I don’t look like I’m being stabbed in the back every few seconds. My smile is my favorite accessory.

10. The simplest things can be a major achievement for me.

I was asked to write an essay for school called “I skill I am proud to have developed.” I spent hours telling myself I have no skills and I’m barely able to walk, when really the skill I am proudest to have developed is walking! After not being able to walk for eight months, I learned to walk again with the help of my amazing team of physiotherapists, occupational therapists and doctors, and to say I am proud of myself is an understatement. But when I tell my friends and classmates this they look at me as if I’ve got two heads. They don’t realize this achievement is like climbing Mount Everest to me. This hurts me deeply as this is the third time in two years that I have had to relearn this skill. They don’t realize the amount of effort, energy and pain I’ve had to endure to be able to take a few steps. How frustrating it is when your physiotherapist has to physically lift your leg forward because your leg won’t step forward on its own. So when I finally manage to take a step on my own, please try and understand why I’m so happy and proud to be able to do this. 

11. There are good days and bad days.

This goes for most people but especially people who suffer with chronic pain. There sare days when I feel like I can do anything — go to school, go to music class, do some studying — what most people would classify as a “normal day.” Those days are great and I go to sleep every night praying, please let tomorrow be a good day! But there are also bad days, and those days can range from me feeling a bit sorer than usual to not being able to get out of bed. Sometimes if I do too much, than I can expect to have a “bad day” the next day, but other times they come out of nowhere. These days I try my hardest to keep going and I wear my fake smile, but it can be really exhausting. That’s why when I’m having a good day, I make the most of them. 

12. “How do you have this problem? You’re only 15.”

I have been asked this question millions of times in the last few years, not just from my friends but also from doctors and nurses. Yes, I do understand it is very rare for somebody to have needed two discectomies by their 15th birthday, but telling me that “Your granny has this problem” or for my doctor to tell me “This is what you’d expect to find in an 80-year-old” doesn’t make me feel any better! I realize my back is not normal for a teenager and that my grandad’s back is probably in better condition than mine, but I can’t help it. It may be rare, but it is very much real and I’m the one who has to live with an “80-year-old’s back” every day. 

I’ll forever be grateful for all the love and support my friends give me, don’t get me wrong, but I wish they would just understand that everything isn’t always as simple as is seems. My life is like a movie — a lot happens behind the scenes.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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