woman sitting down and selling movie tickets to a couple at the box office

To the Customer Who Judged Me for Sitting Down at Work

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After working in the retail sector for as long as I have, I’ve learned that customers are inquisitive and tend to point out when something is different. In my four years of working at my local cinema, I have been asked a plethora of questions about the cinema: “Can I take my drink in with me?,” “I’ve only got cash – is that alright?,” “You’re Screen 3, Row H, Seats 10 and 11″… “So can we just sit anywhere?” (*facepalm*). Other times I get asked slightly more intrusive questions: “Why do you spell your name like that?,” “Do you have a boyfriend?,” “Did you intentionally dye your hair to match your shirt?” (my dip-dye pink perfectly matched the stripes down my sleeve – not intentional). Eventually you learn how to answer these questions and let them brush over you. However, when I returned to work between surgeries I did not have such a great experience with customer questions.

The first day I went back, I tried (way too soon) to work as if nothing had happened, but after just short of an hour on my feet I couldn’t hide the tears from the pain in my back any longer and I had to sit down. So my subsequent shifts I was allowed to sit and take guests tickets, using my stick to get up to use the scanner for e-tickets. Many of my colleagues saw me struggling with my stick and asked why I’d even bothered to come back to work between surgeries (the answer: because I need the money, but that’s a separate issue entirely). Customers, however, were not so kind.

Although most comments were innocent, one comment still sticks out in my mind. I said my usual “Hi guys” as I waited to be passed the tickets, but without any pleasantries this customer said, “Why do you get to sit on a chair and he doesn’t?” I felt this was a little rude and direct and, although I shouldn’t have to divulge the fairly personal health reasons as to why I was sitting down and my colleague on the other side of the building was standing up, I simply said, “I had spinal surgery a few weeks ago” – an honest answer but definitely not the full story. When I had revealed this small part of my journey to other inquisitive customers, they would reply with an apologetic “good luck with that,” but instead, this customer said, “Don’t give me all that.” This upset me, but not wanting to let it show I took their tickets and sent them on their way.

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I didn’t want to stay quiet. I wanted to tell him I was a 21-year-old chronically ill woman who has been in constant and often extreme pain for the last two years, who was unable to stay at her university due to debilitating symptoms, who needs daily medication to manage these symptoms and who has already had three surgeries in the last four months (the most recent being two and six weeks earlier) and was awaiting a final one but needed to work in order to make enough to get by. Sitting on a chair does not stop me from doing the same job which enables you to see your film; in fact, it enables me to do a job I wouldn’t be able to do without sitting.

The amount of people who simply felt the need to point out I was sitting down was astonishing to me, especially since my walking stick was clearly visible. With most of the comments I used my usual trick of laughing along with the customer and brushing it off. Many innocently remarked that it must be nice to be able to sit down. And yes, it has been nice in the sense that it has allowed me to continue working despite my surgeries, but the fact I am in pain and unable to stand and walk unaided is not so nice. But no one asked me why I needed a walking stick, so…

Dear Customer,

If anyone is sitting down at work where you would normally see someone standing, there is probably a reason for it. An important reason that meant an employer had to make reasonable adjustments for that employee to do their job. The reason is none of your business. If someone is genuinely interested, I am quite happy to advocate for my conditions. I take great pride in spreading awareness.

But please do not ask and then be rude about the answer. You asked me not to “give you all that” – I barely gave you one percent of my journey. I told you about my surgery and you still gave me grief. I wish I could stand up without being in increasing pain. I wish I could do my job without having to answer such questions and having my weakness pointed out to me over and over again. All I’m doing is trying my best to pay my way in this world. Surely you can understand that.

I’m 21 – I should be graduating with my friends, going out to parties, being “young,” but I can’t because I’m sick and I will always be sick. So the next time you see someone or something that is different, please don’t point it out. There is a reason for it and you don’t know how much pain your words can cause. Next time, please think before you speak because someone may be fighting a battle you know nothing about. Be kind, always.

Many thanks,

The chronically ill young woman sitting down at work

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What Hiking in Alaska Taught Me About Chronic Pain

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A short while ago, I went on a retreat with a few ladies whom I adore and found myself venturing all the way to the northern city of Fairbanks, Alaska. Little did I know at the time, this trip would fill me with spiritual inspirations and many lessons.

On this retreat, there was a tradition wherein the women hiked what seemed to be a mountain to me. I believe the name was Angel Rock. “Only three and a half miles,” they reassured me, attaching “at a very steep angle” to the end.

Because I ran a body scan to determine where I was physically, I thought that I could definitely pull the hike off. I knew it would hurt, but three and a half miles did not seem like too much. I decided I could handle the adventure, so we pressed on.

The day was sunny but had a cloudy forecast. I brought my camera and a bottle of water. As a group of seven, we headed out. The weather was gorgeous, the air smelled fresh and crisp and we often passed other people happily smiling on the trail.

When we came to a little wooden bridge at the base of our incline, we waited for the rest of the group to catch up. We could see they were slowing down and somewhat struggling to match our pace. With a little more conversation, we uncovered that one of the ladies hiking with us had overcome brain cancer 11 years before. The doctors had done everything they could to remove the tumor. We learned that her balance was severely impaired, but she was hell-bent on making it to the very top of the mountain. We were amazed by her confidence and determination. She had a peaceful demeanor, and we all wanted to help her achieve her goal. I myself had never been on this trail before, so I was unaware of what lay ahead.

For this story’s purpose, I will refer to this beautiful lady as Mrs. R. After the first stretch of our hike, she spent a moment resting on the bench, and from there on out, she was always careful. Mrs. R. carried two small bottles of water (one in each hand) during most of the hike in order to help keep herself balanced. If she took a sip from one bottle, she would then quickly uncap the second and drink from it in order to keep both equal in weight.

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After we all decided that we were rested enough, we set out again. Unsure of what Mrs. R. would need from us in terms of assistance, we worked with trial and error. One of our ladies stood behind her with a hand on her back in case she became unstable and started to fall backwards. I think this was an exploration of her capabilities for all of us. I could see that she was really studying what she could and could not do as much as we were. The trail was becoming more treacherous as we continued.

Mrs. R. became unstable and started to fall sideways a couple times. I stepped up and held out my arm, she hooked her arm over mine and together we made a wider and more stable base. This was one of my big spiritual lessons. As we walked, she would propel herself forward with great strength. When she did this, she was incredibly precise with her steps. She had enough energy to propel herself five or six steps forward at a time, but she would then need to stand straight and try to catch herself. This was always when she would start to lose her balance.

I began to consider balance and what it means to me. I had recently heard a friend say that she did not believe in balance, and I had been entertaining this theory for a while. As I watched the inspiration of a lady ascend the mountain, I realized that, just like when using a motorcycle or bike, the trick to balance is in the forward momentum. I started to relate this to my life experience. When I am spiritually stagnant and trying to exert control over my journey by using sheer willpower to stay balanced, I struggle. On the other hand, when I have a purpose or a destination, I tend to remain harmonious with life. This really put balance into perspective for me. The trick is to keep moving forward and remember to value the journey.

During the hike, I walked slightly hunched over, which caused a lot of discomfort in my back. The trail became scarier as we climbed. The ladies and I took turns standing on either side of Mrs. R. Some places on the trail were only wide enough for one person, making the climb more challenging.

This was also not easy for Mrs. R. I don’t think anyone particularly wants to need that much help to complete a goal. I know how scary it is to feel like I am losing my independence. Depending on a group of people can be very humbling.

As we climbed higher, many of us began to get tired. There were clouds in the distance with showering rain, roaring thunder and flashing lightning. I found myself becoming very worried, and all kinds of fear creeped in. I could see that the pain in my body was intensifying and that I was not going to be able to help Mrs. R. for much longer. We had not even completed half of the trip; we still had the entire incline. I was concerned that if we let go of Mrs. R., she would fall – not just to the ground, but off the mountain. Besides the fear of her getting hurt, I could see that we were all in danger of injury ourselves. I was afraid that the rain would come and make the trail treacherous and slippery. None of us were geared properly for a thunderstorm. I voiced my fears a couple of times in hopes that she would change her mind.

I had been letting my fears discourage me from life for way too long. Here I was trying to do the same to her. She was not having any of it. So, we climbed. At each beautiful outlook, we would rest and catch our breath. We could see how far we had climbed, and it was amazing.

We reached the peak three hours after we started our climb. Mrs. R. asked, “Are you sure this is the top?” We all laughed as she stood by the sign in her victory pose, her feet were hip-width apart and arms in a big V in the air. we all snapped photos in order to capture this spectacular moment. We had not brought much food because no one had planned on being up there that long. It was just a short hike anyway. What little food people did have, they shared.

Speaking for myself, I was tired and in immense pain. My back was in excruciating pain and my hips ached and felt stiff. I could tell that Mrs. R. was also becoming stiff and pained with each step. After much debate over which trail we would walk down, we started our descent. There were places where the trail was so vertical that it felt like a cliff. There were also loose rocks that we all slipped on many times. It was becoming more dangerous and we were all tired, worn out and pained.

Halfway down, the rain hit us. Now, it was not just any rain; it was Alaskan rain. The weather changed from hot Alaskan sun to frigid Alaskan rain. We were tense and shivering. We sent two ladies ahead to start the trucks and turn on the heat. The trail was covered in roots that became deathly slippery in the rain. Attitudes began to plummet. It was getting harder to feel positive and excited. We took turns standing on either side of Mrs. R. A couple of us fell on the hard, cold trail. After I knew that I could no longer hold anyone up because I could barely do so for myself, one girl and I took off for the trail head. We left behind Mrs. R. and the two ladies at her sides. When we got to the trail head, we sent for more women who were at our camp and had not come on the hike. I sat in my friend’s car, shivering and eating chips. A group of ladies rushed down from the camp, blankets and positive energy in hand. We sent them down the trail for the rest of our tribe.

If I had known the details of how this trip was going to unfold, I’m not sure I would have showed up. I’m glad the future is unknown, because I know I would opt out of events and miss those that are deeply profound and wonderful by accident. As I waited for us all to reunite, I realized some more powerful observations. When we work together, we can get through any storm of life, regardless of our physical condition. Not everything needs to feel good to be beneficial to life – my life, someone else’s life or that of the world. I remembered not to let fear make my decisions. I was reminded that not everything was about me. I felt inspired by Mrs. R.’s dedication, strength, inner peace and enthusiasm.

Cold, tired, hungry, pained and slightly irritable, we all returned to the camp. Even though I could barely move my body and would physically pay for the trip for a couple days, a real sense of satisfaction came over me. We had done it! We had all done it. Mrs. R. could then cross Angel Rock off her bucket list. What an accomplishment. I can only hope that one day I will be as strong as Mrs. R.

This post originally appeared on Mandy’s Orthopedic Adventure.

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My House Is a Mess Because I'm in Pain, and That's OK

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Reality check: my house isn’t featured in those design magazines.

And unfortunately, I don’t think it ever will be. I would love for it to be one of those kinds of homes, though. You know… clean. I’m sure we would all love a home like that, right? Bright. Inviting. Spacious. Maybe I’ll have a home like that one day. But for now…

My house is a mess.

I can tell you right now that if you were to come over, you will find dishes in the sink, jackets thrown over the sofa and cat toys everywhere. Even if I had been expecting you, my house would be in the same state. You may think I’m just lazy. When you see me, you see a healthy looking 20-something stay-at-home-mama. You may even think that I’m incredibly lazy because it’s not as if my child is a toddler who needs constant care. My son is 12 years old. He walks to and from school by himself. He prepares his own breakfast and heats his own lunch for school. But something you don’t see…? Something you don’t realize is that…

I struggle. Every. Single. Day.

You can’t tell by looking at me that I have had seven diagnoses since September 2015: one dermatological condition, four spinal conditions, anxiety and clinical depression.

You wouldn’t know that:

– I was one semester away from graduating from my registered massage therapy program before I had to go on this medical leave

– I have seen six specialists to try and find the correct diagnoses

– I have a “little pharmacy” in my bathroom for the collection of medications that I have to take and that I get a blood test every month to make sure that my medications aren’t affecting my liver

We’ve all been there are some point – quick to judge until we realize that there are conditions that are not visible to the naked eye. Just because someone doesn’t look like they’re struggling or suffering, doesn’t mean that they aren’t.

So why is my house a mess?

The simplified version: my back hurts.

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The not so simplified version: the conditions that I was diagnosed with causes me great back pain. So much back pain that I have to lay down multiple times a day to get the pressure off my spine. I was advised by my doctor to not get a job where I stand all the time. In all honesty, that advise kinda sucks. It’s not as if my back only hurts if I stand for long periods. My back also hurts when I sit for too long. So pretty much… laying down is the only pain-free position for my back.

Let’s go a bit in-depth, shall we?

The least worrisome of my spinal diagnoses are degenerative disc disease and scoliosis. I mean, we’re all going to get DDD at some point in our lives and my degeneration is still on the mild side. I have an s-curve scoliosis – that means that it affects my entire spine.

My last two diagnoses are a bit more complicated and they’re the ones that affect me the most. I was diagnosed with bilateral spondylolysis and spondylolisthesis.

Spondylolysis is a defect in a part of your vertebrae. In my case, I have a fracture on either side of one of my vertebrae. How did it happen? Beats me! *shrugs* It’s usually caused by high-impact sports. I don’t do sports.

Spondylolisthesis is when one of your vertebras slip forward in relation to the others. There are four grades – a grade per percentage affected (grade 1 = 0 to 25 percent, grade 2 = 26 to 50 percent etc.). The higher the grade, the higher chance it will start affecting your nerves (…because it’s getting squished). I have a grade 2… it’s getting there.

The combination of those four conditions makes me feel like I’ve got a load of bricks on my shoulders no matter where I go.

The pressure on my spine is intense. I can only walk one-third of a kilometer before I feel it. It hurts to bend my back… so maybe you can see where I’m going here. What requires bending when taking care of a home? Silly question, I know. But honestly, my spinal conditions affect a lot of things in my life.

– I can’t lift anything heavy… it’s added weight to the bricks I’m already carrying

– It hurts to do the laundry. Switching the clothes from washer to dryer… ugh.

– It hurts to load and unload the dishwasher. Repetitive bending? No, thanks.

– Vacuuming puts a lot of pressure on your low back, even if you don’t realize it. I do. It hurts. So I can only vacuum a little bit at a time. One section a day.

– I can’t walk or stand for too long. Necessary things like grocery shopping, I need to brace myself for. No, really. You see me pushing a cart? It’s probably because I’m using it as a walker.

Actually, speaking of bracing. I have a back brace. I also have a knee brace because the whole ordeal is starting to have some effect on my knees. Lucky me.

So that’s why my house is a mess.

It used to bother me. It took a while for me to accept that I can’t function the way I used to. It’s either I clean my house like a mad woman and then be out of commission for days or… I clean what I can – when I can – so that I am still “useful.”

So what’s with the sweats?

I’m a homebody. I love to stay home. I go out if I have to… you know… grocery shopping and the like. But if I have a choice… I’ll be at home. There is no need to “dress to impress.” I live in my sweats because it’s comfortable. Imagine being in pain and uncomfortable. Not pretty. No thanks. I’ll pass.

Truth: I love my sweats.

So please don’t judge me. Don’t judge my messy house. It’s messy because I don’t want to be down for the count. It’s messy so I have the capacity to take care of everything else. It’s messy not because I’m lazy, but because I’m in pain.

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The Challenges of Being a College Student With Chronic Back Pain

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Let’s be honest: living a life of chronic pain in college is hard. Trying to explain yourself to everyone around you. Always having a condensed version of your story ready to explain to whoever asks. Hoping they will accept your story with an open mind and a kind heart. Knowing that half the people you tell will say that their back hurts sometimes too. It is hard to be kind in explaining that although sometimes their back may hurt, yours is constant.

When I wasn’t in college I was able to separate myself from my back pain. It didn’t have to be the center of my being. But now that I am away, my pain has taken on a new life. I can’t shove it in a closet and forget about it.

People greet me and ask one of two questions. The first is: “Where were you yesterday?” This question is generally asked by people who don’t have a clue about my pain or have forgotten my pain was a thing. Every time this is asked my response is either that I was at the doctor or that I wasn’t feeling good. I don’t have the energy to tell them that my back was hurting so much I couldn’t sit through class or that I was going to my third doctor appointment that week.

The other question I hear is: “How are you feeling today?” While I am grateful that they remember what is going on in my life, all I want is to be “normal.” I want to go back to being the person who could shove their pain to the side and forget it is there.

I am still in the beginning of my chronic pain journey. For this I am thankful, but also frustrated. I am still trying to find a doctor who will validate my pain and stop pretending it is in my head. Because of this I am struggling to validate my pain and health issues with campus access programs. One of the hardest things I have done while at college was apply with the disability program. Not long ago I was a teenager leading a typical life. Now, just a few years later, I am a 19-year-old applying for disability and sitting in waiting rooms with people more than three times my age. The amount of times I hear “Girl, you are too young to have a back problem” makes me want to scream.

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But regardless of the frustrations of my situation, I remain hopeful. Hopeful this doctor will do something, hopeful I’ll find relief, hopeful I will get through this semester.

In the same sense, I am incredibly thankful. I am thankful for the doctors and nurses and therapists who are trying to help me, thankful for my incredible roommate who always wants to listen and thankful that I know I can get through this.

Stay thankful and keep hopeful and you can get through anything with a smile.

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The Decisions I Have to Make on Christmas Day With Chronic Pain

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It’s Christmas Day! For most people this stirs excitement for the upcoming events of the day. Family time, the scents of the tree, carefully chosen gifts, fresh baked treats and our favorite dishes for the big meal of the day.

For me, I think first about how dressed up I will get. Will I spend the extra effort to curl my hair and dress up my make-up? Fancy festive clothes or comfortable clothes? Do I push the envelope and try to wear some heels even though I know I shouldn’t? They would look better than flats with my cute outfit though. (My first anxiety episode usually kicks in right about now.) I give up and go with the more comfortable clothes because if I’m going to be in pain most of the day, why add to it by wearing uncomfortable clothes.

Running late, due to all the “rest breaks” I had to take while getting ready, we hurry to load the car with all the gifts and food and drive 30 minutes or more, depending on traffic, to our first destination. Do I take a pain pill now or do I wait until later in the day? If I wait till later, I can at least enjoy part of the day without being in a hazy fog. Although, if I wait too long, then my pain will rule the day and I won’t enjoy anything. I try, I really do, to enjoy the festivities. All the while, I’m trying to hide how bad I’m hurting or going outside in the cold air to try and soothe another anxiety attack without anyone noticing or commenting.

Now, how many houses do we visit? Do we focus on one side of the family today and try (knowing someone will get their feelings hurt) to move the other half of the family to Christmas Eve or the day after Christmas? Or do I push myself to go to both places in one day? Fight through the pain and anxiety attacks, knowing I will get no sleep that night? How long do we stay? Can we move things along without looking like that’s what we are trying to do? Not because I don’t want to spend time with everyone but because the less time I’m there the sooner I will be in the comfort of my own home. Then I can start dealing with the physical/mental aftermath of the day’s events. Tomorrow will be filled with pain meds, guilt, more depression and laying around while the acute pain runs its course.

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Meanwhile, the frustration of my family shows on their faces or in their comments. The questions of “Why don’t you just have surgery?” or “Have you tried doing _____?”(cue filling in the blank with just about any suggestion you can imagine). Or, my favorite, “Hope you feel better soon.” I grit my teeth every time I hear that one! Even though I have explained to them numerous times that I won’t ever get better. I will always have pain. The degree of pain may be “better” on some days, but I will never see “before back pain” comfort levels ever again. I get their frustrations – believe me, I do! Yet no one is more frustrated about it all as much as I am. Dealing with chronic pain every day is more than frustrating; it’s debilitating. Physically and mentally.

All of that being said, last year my husband and I spent Christmas Day at our house, just the two of us. We split our time up between each side of the family. Doing the day before with one side and the day after with the other side. We asked them to please understand. Even though I am close with my family, I must say it was one of my favorite Christmas Days ever! We took our time waking up, had a nice breakfast, turned the fireplace on and relaxed all day. We enjoyed each other with no stress. We reflected on our past year and looked forward to the years to come with hope. Christmas music on in the background, we fixed an easy Christmas dinner for two. Then we opened our gifts and drank some wine in the dark with nothing but the Christmas tree and the fireplace adding a soft glow. It was wonderful and romantic.

Can we with get away with making this our Christmas tradition from now on without upsetting the family? I don’t know. Understandably, I can already picture the looks of disappointment and the sad tones in their voices. It is wonderful to be loved so much! Besides the fact that it kept me from pushing myself past my “comfortable point,” it was a more meaningful Christmas Day for my me and my husband. I finally enjoyed Christmas for the first time in forever because there was no stress, no toes being stepped on and no big mess to clean up! This also made the days leading up to Christmas more enjoyable because I knew exactly what the events of the day would be. For the first time in years I looked forward to Christmas Day with excitement instead a cloud of dread and depression.

I guess those of us struggling with limitations should try to make Christmas the best it can be for ourselves. We can try to include the old traditions, but we won’t always be able to make everyone happy and we need to be aware of our limits. So, while I stress over what I am going to wear on Christmas Day and where we will spend it this year, I wish you all a holiday season filled with comfort, peace and happiness!

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When a Nurse’s Compliment During My Procedure Changed My Life

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As I sit and write this, my back pain in flaring up. Just sitting in a computer chair makes it feel like my back is on fire. Let me explain about my back: I have two pinched nerves in my neck, mild degenerative disc disease in my thoracic spine and a bulging and herniated disc in my lumbar spine. So when I say my back hurts, I mean my entire back.

After years of putting up with this pain, I finally found an amazing pain management doctor who suggested getting an epidural for my lower back pain. An anesthesiologist sedates you for the procedure so you have to get a ride home from the hospital. I’m not sure why, but I hate asking people for rides. Because I live with chronic pain, I fight to stay as independent as possible. Asking for rides reminds me there are times when I absolutely have to depend on other people to help me.

After my first epidural I decided to do some research to see if there was a way to avoid the sedation. During my research, I discovered sedation could be optional for my next procedure. I was so excited when I read that. As a person who doesn’t like to ask for rides or get sedated I thought maybe I could avoid both. When it came time for my next epidural, I asked my doctor if I could try the procedure without sedation and he agreed. I was familiar with the procedure because I had it done before, but I was concerned about the amount of pain I would be in. Along with the epidural I was also receiving trigger point injections for my neck.

On procedure day, I was still a little nervous about the pain. They had me lie on my stomach, and they put an oxygen mask in my nose. Between the staff’s calm voices, the oxygen and knowing some pain relief would be coming soon, I really started to relax.

Once they confirmed with me I wasn’t getting sedation, the procedure started. There was no turning back now. As the epidural needle went into my lower back, I felt the medicine being pushed in – a weird sensation I would describe as liquid being forced into your body. But there was no pain. At all. Just the prick of the needle. I got really quiet and the nurses kept asking me if I was OK. Between the oxygen and the sensation of the needles, I was actually calm. They took my blood pressure during the procedure and it was lower than when I got there. That is how relaxed I was. The nurses started telling me I was so brave. Someone also said there are grown men who skip sedation and are screaming in pain during the epidural. I loved hearing all this encouragement. Once the epidural was over, my doctor moved onto trigger point injections. Even after multiple needle sticks, it was a very peaceful experience.

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The entire staff in the procedure room was kind and supportive. Then came the words I will never forget. One of the nurses, Julie, said to me, “You’re an Amazon woman.” It was in reference to the fact that I didn’t get sedation and made it through the procedure without complaining. Having had chronic pain for almost seven years makes me feel weak. On my worst days, just getting out of bed seems like a monumental task. It is also frustrating when my mind says, “Go” but my body says “Oh, heck no.” Having Julie say those words to me was so empowering.

Now when I think I can’t do something or am struggling with even a simple task, I say to myself, “You are an Amazon woman,” and it gives me the drive to push myself. Julie changed my life that day. To have a total stranger see I am strong despite my unrelenting pain made me want to be an example to others – to tell them “Yes, the pain does suck, but you are so capable of being strong.”  I try to encourage others the same way Julie encouraged me.

And let me just take a minute to mention how awesome my pain management doctor is. It took me years to find such a kind and caring doctor who believed I was in pain. I know many people who had to search for years like I did to find the right doctor. If you are still searching for that great doctor, don’t give up!

I have the same procedure done every three months to help with my back pain. I actually look forward to going because I know pain relief is coming. But I also get to see Julie and the amazing staff in the procedure room who tell me how strong I am – a reminder that I am an Amazon woman!

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