I have strength.
I have strength when I am curled up in a ball in bed after the 5th day of my flare up, not ready to give up.
I have strength when my pain medicine is making me spin and nauseous, but I'm not going home from work.
I have strength when the nurse prods me with a needle for the 4th time because my veins are acting like twizzlers in my arm.
I have strength during an EMG when the doctor tells me he doesn't really 'think' I have Thoracic Outlet Syndrome, even though I've been diagnosed for the better part of 9 years.
I have strength when I go in for another upper scope with the fear that it has something to do with my TOS surgeries.
I have strength after the Doctor tells me that my paralysis that I already have in my esophagus could have gone further into my digestive tract.
I have strength when the Doctor tries to prescribe me anti-depressants for 'stomach cramps,' because I need one more medication and problem in my life.
I have strength as I take my digestive issues into my own hands because there's no way I'm touching that crap.
I have strength as my fatigue cloud kicks into high gear during the third meeting at work.
I have strength as I have my third cup of coffee and nod off while writing another email.
I have strength staring at the piled up dirty laundry I let lay in baskets another day because I need to rest.
I have strength when I push through the second half of my walk with the dogs because they need the exercise..... and so do I.
I have strength as I push the cart through Walmart, anxiety through the roof, just so I can put food on the table tonight.
I have strength after hours of yard work I know will put me into a flare up but it's so damn pretty when it's finished.
I have strength when I bail on friends the third time in a row because I'm just too tired and depressed to put on a smile.
I have strength as I finally shower after the fourth day of contemplating how much energy it's going to take me.
I have strength when I think about the difficult road that was placed in front of me, only to be stronger and smarter for the next portion of the journey.
I have strength when I stare into the mirror, still trying to understand myself completely and be OK with me the way I am.
I have strength as my fingers trace all of my scars that were placed on me by the devil himself, trying to pull me all the way under but failing.
I have strength.
I have strength because I am still here today, fully alive and breathing and conscious.
I have strength because I haven't given up.
I have strength because I am a warrior.
I have strength, and so do you.
Equanimity,
Kelsey
Showing posts with label thoracic outlet syndrome. Show all posts
Showing posts with label thoracic outlet syndrome. Show all posts
Wednesday, June 5, 2019
Monday, January 8, 2018
.Today.01/08/2018.
On this day 2 years ago, Mom and I traveled to St. Louis to patiently wait for my name in the waiting room of the O.R. What seemed like a normal day to most, was not to me. Nerves tingled inside every cell of my body as I was waiting for some kind of miracle. I was living in pain for years, without a single course of action to completely cure it or curve the pain. Countless tears, bouts of anger and frustration, and days of acceptance and clarity led up to this. I never really knew how to document this part of my journey or how to put it into words until today. In the past 2 years, I have picked up my pen, tablet, or phone multiple times only to look at the blank slate with doubt. I never knew how to start. It has always been a blurry time for me, and lots of pain and heartache come back when I tried to recall certain details and it got to be too much to handle. The months that followed my stay in the hospital were fuzzy, but finally today I can recall my stay with crisp and clean clarity. I can remember every detail, big or small, to an exact replication. I can remember it as if it were today.
I remember the smell of the hospital, the curve of the bed against my back, the feeling of horror as I woke up not being able to move my arm or feel it as the nurse moved it around while fixing my blanket. I remember my morning nurse taking out the catheter and feeling pain and relief throughout my entire body sent down from the gods and goddesses themselves. I hear my voice beg for food, only to realize I wouldn't be eating for a full 72 hours (plus the 30 hours before surgery itself.) I feel my first few wobbly, drowsy steps out of bed to the hallway, with my IV stand casting my shadow. I sense my mom's arm gently wrapped around my right arm, with the other gently resting on my stomach as we slowly walked on. I remember gazing at my left arm, as the pins and needles started, a wonderful sign that my nerves are starting to wake up and heal.
I see myself holding back tears at 3 in the morning while the nurses prod and poke at my arms several times trying to find a vein, unsuccessful more than 6 times after my IV had slipped out (one of my many nightmares that disrupts sleep to this day.) I can hear the patient on the other side of the room scream and whimper as she waited for nurses to run to her bedside more than a dozen times per night. I can taste the sugar from the Popsicles and jello I was only allowed to eat for days and puking my soul out at 5 in the morning from gut rot and crying to the nurses "I'm sorry" because I would never be able to clean it up myself. I remember the day I was discharged, weak and exhausted. I can taste the first few Cheerios my nurse smuggled in for me because just like us, she thought it was ridiculous that my doctor didn't clear me to eat bright and early on the 3rd morning.
I can see my nurses faces while saying 'thank you' and 'goodbye' as mom wheeled me to the elevator. I remember feeling so trapped , like the journey should feel over but really it only just had begun. I feel the embarrassment sitting in a swimsuit tipped to one side as my mom washed my hair in the hotel tub while I tried to fade away into Wild Child that was playing in the background. I remember pure happiness from Skyping Julie, another TOS Warrior whom I 'met' on a group a few weeks prior and not feeling so alone in that moment. I remember the sinking feeling in my chest as mom had to empty my drainage tube twice a day and make sure my bandages were clean.
I see my dad's face with a fresh smile as he entered the hotel room with a new body pillow and stuffed elephant, hiding how exhausted he was from his 8 hour trip to scoop me up and take me home. I remember the feeling when I was finally handed what was left of my rib after getting cleared to go home from my surgeon. I can feel the light wave-like motion while laying down across the backseat on top of a pillow bed of my parent's SUV. I remember opening my eyes and looking up out of the window to see my apartment right in front of me, waiting. I feel the heaviness in my legs as I climbed those stairs with my parents trailing behind, all of my belongings in their hands. I remember hugging my cats and telling them how much I missed them and how my apartment was arranged and the ugly color of my periwinkle kitchen. I remember all of that.
And just like that, I don't remember anything after. For days. For weeks. For Months. Days dropped by without me noticing like petals gracefully falling off wilted flowers sitting on the dining room table. I can't remember what I did. I can't remember who I saw. I don't recognize certain dates and events that happened. I don't remember going back to work. I don't remember eating ice cream or going to a movie or taking a walk or any of it. It was a blur.
But out of all the darkness and fog, what I do remember is this:
I remember fighting my body to wean off pain medication, nausea pills, muscle relaxers, and anything else that was shoved into the brown paper bag I received from the Barnes & Jewish pharmacy. I remember my foggy mind as I returned to St. Louis for my check ups and when my surgeon commented that my shoulder was healing well. I remember the stern confidence in his voice, when my voice quivered as I answered questions about the future. I remember all of my dry-needling appointments with my physical therapist. I remember every flare-up and migraine after he hit the wrong trigger point. I can feel the anger swallow my insides as I got results of a partial paralyzed esophagus from surgery after months and months and thousands of dollars spent on testing. I can feel the burn from all my tears, as if they were imprinted as tiny little scratches on my face. I can taste the words of defeat when my flare-ups were more frequent, and pain was more constant but I still moved forward. I can taste, hear, feel, and clench the anger that has been within me over the years. But today, I let it go.
Today I let go of all of the 'can't' 'won't' and 'shouldn't' moments in the last few years. Today I grasp what I 'can' 'will' and 'should' do in the present and future. Today marks two years since that awful, dreadful, painful, delicate, vital, beautiful part of my life. Today marks the day that I have officially paid off both of my surgeries, multiple tests and medical equipment. Today I no longer feel like a science experiment, like some animal in a containment cell exhausted from test after test. Today, I feel a little more human and back to normal. Today, I feel incredibly free.
Equanimity,
Kelsey
I remember the smell of the hospital, the curve of the bed against my back, the feeling of horror as I woke up not being able to move my arm or feel it as the nurse moved it around while fixing my blanket. I remember my morning nurse taking out the catheter and feeling pain and relief throughout my entire body sent down from the gods and goddesses themselves. I hear my voice beg for food, only to realize I wouldn't be eating for a full 72 hours (plus the 30 hours before surgery itself.) I feel my first few wobbly, drowsy steps out of bed to the hallway, with my IV stand casting my shadow. I sense my mom's arm gently wrapped around my right arm, with the other gently resting on my stomach as we slowly walked on. I remember gazing at my left arm, as the pins and needles started, a wonderful sign that my nerves are starting to wake up and heal.
I see myself holding back tears at 3 in the morning while the nurses prod and poke at my arms several times trying to find a vein, unsuccessful more than 6 times after my IV had slipped out (one of my many nightmares that disrupts sleep to this day.) I can hear the patient on the other side of the room scream and whimper as she waited for nurses to run to her bedside more than a dozen times per night. I can taste the sugar from the Popsicles and jello I was only allowed to eat for days and puking my soul out at 5 in the morning from gut rot and crying to the nurses "I'm sorry" because I would never be able to clean it up myself. I remember the day I was discharged, weak and exhausted. I can taste the first few Cheerios my nurse smuggled in for me because just like us, she thought it was ridiculous that my doctor didn't clear me to eat bright and early on the 3rd morning.
I can see my nurses faces while saying 'thank you' and 'goodbye' as mom wheeled me to the elevator. I remember feeling so trapped , like the journey should feel over but really it only just had begun. I feel the embarrassment sitting in a swimsuit tipped to one side as my mom washed my hair in the hotel tub while I tried to fade away into Wild Child that was playing in the background. I remember pure happiness from Skyping Julie, another TOS Warrior whom I 'met' on a group a few weeks prior and not feeling so alone in that moment. I remember the sinking feeling in my chest as mom had to empty my drainage tube twice a day and make sure my bandages were clean.
I see my dad's face with a fresh smile as he entered the hotel room with a new body pillow and stuffed elephant, hiding how exhausted he was from his 8 hour trip to scoop me up and take me home. I remember the feeling when I was finally handed what was left of my rib after getting cleared to go home from my surgeon. I can feel the light wave-like motion while laying down across the backseat on top of a pillow bed of my parent's SUV. I remember opening my eyes and looking up out of the window to see my apartment right in front of me, waiting. I feel the heaviness in my legs as I climbed those stairs with my parents trailing behind, all of my belongings in their hands. I remember hugging my cats and telling them how much I missed them and how my apartment was arranged and the ugly color of my periwinkle kitchen. I remember all of that.
And just like that, I don't remember anything after. For days. For weeks. For Months. Days dropped by without me noticing like petals gracefully falling off wilted flowers sitting on the dining room table. I can't remember what I did. I can't remember who I saw. I don't recognize certain dates and events that happened. I don't remember going back to work. I don't remember eating ice cream or going to a movie or taking a walk or any of it. It was a blur.
But out of all the darkness and fog, what I do remember is this:
I remember fighting my body to wean off pain medication, nausea pills, muscle relaxers, and anything else that was shoved into the brown paper bag I received from the Barnes & Jewish pharmacy. I remember my foggy mind as I returned to St. Louis for my check ups and when my surgeon commented that my shoulder was healing well. I remember the stern confidence in his voice, when my voice quivered as I answered questions about the future. I remember all of my dry-needling appointments with my physical therapist. I remember every flare-up and migraine after he hit the wrong trigger point. I can feel the anger swallow my insides as I got results of a partial paralyzed esophagus from surgery after months and months and thousands of dollars spent on testing. I can feel the burn from all my tears, as if they were imprinted as tiny little scratches on my face. I can taste the words of defeat when my flare-ups were more frequent, and pain was more constant but I still moved forward. I can taste, hear, feel, and clench the anger that has been within me over the years. But today, I let it go.
Today I let go of all of the 'can't' 'won't' and 'shouldn't' moments in the last few years. Today I grasp what I 'can' 'will' and 'should' do in the present and future. Today marks two years since that awful, dreadful, painful, delicate, vital, beautiful part of my life. Today marks the day that I have officially paid off both of my surgeries, multiple tests and medical equipment. Today I no longer feel like a science experiment, like some animal in a containment cell exhausted from test after test. Today, I feel a little more human and back to normal. Today, I feel incredibly free.
Equanimity,
Kelsey
 |
| On the flight to STL with Mom |
 |
| Pre-Op, getting hooked up and waiting for the OR to be cleared |
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| Post-op from a 4 hour surgery and was first told I couldn't eat because they were concerned with my lymphatic system |
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| 1/11/16 my first taste of real food in over 92 hours |
 |
| Mom and I rooting on the Packers (along with some awesome nurses) |
 |
| Getting Discharged |
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| BUSTING OUT! |
 |
| My top scar is from 1st rib resection and removing scalenes. The bottom scar is from a pec-minor release. |
 |
| (Super gross I know) My drainage tube |
 |
| Happy as a clam |
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| Getting nervous for the tube removal. Holding on tightly to "stripes" |
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| Deep breaths! |
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| The undeniably frustrated face after removal. It was like getting kicked in the chest |
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| Mom joked around a little while I scheduled my checkups |
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| Speaking with Dr. Thompson before leaving STL |
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| My rib, in hand, finally out of my body |
Tuesday, February 9, 2016
Motivation.
I am 24 years old, about to turn 25. My journey with Thoracic Outlet Syndrome started around age 19, with vague symptoms beforehand leading up to it. At that age, you wouldn't see me on the couch or in bed. I was driven, hard-working and motivated with every activity.
Since surgery, I have envisioned the next couple of months. I picture myself healed. I picture myself kayaking for hours, only leaving the water as the sun sets. I picture myself up at 6 a.m. ready for my workout routine, going to work, coming home and doing laundry while making my dinner and even have time to clean the turtle tank. I picture myself active once again.
The reality is that there is no timeline for healing with my body. I'm not sure when that 'feel-good' moment will happen and it's beginning weigh down my happiness. I'm scared that once I start physical therapy, it will take a very long time for me to get back to where I used to be. I was already stir-crazy before my second surgery, and completely fed up after my first surgery in 2014. The searing pain starting in my ear and running down the back of my head and neck finally ending in my shoulder blade is enough to make me want to rip my hair out. My inability to lift over 5 pounds makes me feel weak. Asking my boyfriend to do my dishes is demeaning and having energy to do them one moment and then not the next is confusing.
I've woken up during the night after dreaming of doing yoga. I dream of climbing mountains and swimming vast open waters and taking a midnight jog. My smile is content, hungry, eager for more. I look strong and motivated. I look healthy. I usually wake up in a pool of sweat and pain as I roll over to get comfy. My mind races as I try to venture back into dreamland.
Today, I would like to go back to work. I talked with my mom about it many times. My fear is that I will get there and it will be too much. I'm scared I will over-work myself and cause too much pain or even worse: not work hard enough and look lazy. With chronic pain, it's one end of the spectrum or the other. So I've decided I'm not quite there yet. I want to feel confident going back that no matter what the outcome, it won't affect me mentally.
However, staying home all day with little human contact is strange. I'm so stir crazy that I want to move to the other side of the world thinking that I can run away from TOS and go back to my normal life. I know it's silly; thinking I can run away from my pain and problems. Normal people want to run away from job stress, money problems, relationship struggles. I just want to be pain-free so I can join society once again as an independent, strong working woman. I want to feel confident about the work I put into each and every day. I want to count my blessings as I head to the gym after a 10 hour work day. I want my parents to be proud of the strong young woman I've become. And I'm not at that point as I am nearing 25. I don't like it, and I can't wait to change it. Although my body isn't the strongest, my motivation is. It's the fire that fuels me. It's the fire that makes me get up still every single day, with pain or without, challenging me to become a better person. It's the fire that is going to get me back to good, but even better.
Equanimity,
Kelsey
Since surgery, I have envisioned the next couple of months. I picture myself healed. I picture myself kayaking for hours, only leaving the water as the sun sets. I picture myself up at 6 a.m. ready for my workout routine, going to work, coming home and doing laundry while making my dinner and even have time to clean the turtle tank. I picture myself active once again.
The reality is that there is no timeline for healing with my body. I'm not sure when that 'feel-good' moment will happen and it's beginning weigh down my happiness. I'm scared that once I start physical therapy, it will take a very long time for me to get back to where I used to be. I was already stir-crazy before my second surgery, and completely fed up after my first surgery in 2014. The searing pain starting in my ear and running down the back of my head and neck finally ending in my shoulder blade is enough to make me want to rip my hair out. My inability to lift over 5 pounds makes me feel weak. Asking my boyfriend to do my dishes is demeaning and having energy to do them one moment and then not the next is confusing.
I've woken up during the night after dreaming of doing yoga. I dream of climbing mountains and swimming vast open waters and taking a midnight jog. My smile is content, hungry, eager for more. I look strong and motivated. I look healthy. I usually wake up in a pool of sweat and pain as I roll over to get comfy. My mind races as I try to venture back into dreamland.
Today, I would like to go back to work. I talked with my mom about it many times. My fear is that I will get there and it will be too much. I'm scared I will over-work myself and cause too much pain or even worse: not work hard enough and look lazy. With chronic pain, it's one end of the spectrum or the other. So I've decided I'm not quite there yet. I want to feel confident going back that no matter what the outcome, it won't affect me mentally.
However, staying home all day with little human contact is strange. I'm so stir crazy that I want to move to the other side of the world thinking that I can run away from TOS and go back to my normal life. I know it's silly; thinking I can run away from my pain and problems. Normal people want to run away from job stress, money problems, relationship struggles. I just want to be pain-free so I can join society once again as an independent, strong working woman. I want to feel confident about the work I put into each and every day. I want to count my blessings as I head to the gym after a 10 hour work day. I want my parents to be proud of the strong young woman I've become. And I'm not at that point as I am nearing 25. I don't like it, and I can't wait to change it. Although my body isn't the strongest, my motivation is. It's the fire that fuels me. It's the fire that makes me get up still every single day, with pain or without, challenging me to become a better person. It's the fire that is going to get me back to good, but even better.
Equanimity,
Kelsey
Wednesday, August 19, 2015
Lesson Learned In Traveling With Chronic Pain
Traveling with chronic pain was the greatest challenge I've faced this year. It was a constant reminder every second that I was indeed a different person. I had to manipulate my days to fit into the little energy I had, more than what I already do at home. I had to feel the guilt pouring into my heart because I turned down activities only to feel the frustration from others around me. I felt the lowest, because I didn't feel like myself, and I don't know if I ever will again.
It all started when I found out I was taking a trip up north with my boyfriend for a friend's wedding outside of Boulder Junction, Wisconsin. He planned to go early and make the trip extra special with fishing and swimming. Early on, I was wary considering my health and energy was sliding downhill in the weeks leading up to it. The reason? I had just started Gabapentin and Dry Needling. The emotional side effects alone from Gabapentin were enough to cause suicidal thoughts that lingered while I was awake as well as off into dream land. I would daze off, picturing my hands around my own fragile neck under water, legs kicking, bubbles fluttering up to the surface. I would easily snap myself out of it, but the thoughts always crept in the shadows. Consciously I knew it was the medication; normally I would and could NEVER have a thought such as this. Medication usually plays a huge role in my mental state and emotions. Knowing that while trying new medicines always reassures me I'm not losing my mind (for now).
While combating the awful side effects of Gabapentin, I was dealing with countless flare ups from dry needling. I am not complaining, considering that't the point of the procedure: to piss the muscles off enough and make them repair themselves. However, I happened to develop the worst nerve pain of my life in my neck, collarbone, ear, face and head leading up to the trip.
This is what I was supposed to be doing the day prior to leaving:
Go to doctor appointment, run into work to fill out order, laundry, dishes, pack, clean litter boxes, fold blankets, sweep kitchen, change cat's water and blanket, pay medical bill, fix window screen, set up box fan in window.
This is what ended up happening:
Wake up with screaming headache, take Excedrin with breakfast. No one to drive 30 minutes to doctor so I take myself. Doctor appointment at the pain management clinic. Tell her I'm in pain so politely say make it quick and speak softly. Goes against wishes. Drive home and stop twice from eye balls ready to burst. Call boyfriend in tears. Make it home 50 minutes later. Strip clothes off. Ice on the face, Tramadol. Ice on the neck, peppermint oil on temples, pain cream on collarbone, Tizanidine. Heat on neck with tiger balm, re-arrange pillows, curl into ball. Crawl to bathroom from pain ready to puke. Lay on tiny bathmat holding legs and massaging temples while trying not to cry. Crawl back to bed. Question why I am doing all of this and if it's worth it. Tizanidine. Figuring out who will miss me the most, my cats or my parents. Snapping out of it and telling myself I'm strong. Laughing at the pain. Find comfortable spot. Pain relief for 7 minutes. Start packing. Lightning and thunder return and so do the tears. Tramadol. Considering going to the ER. Repeat.
Defeated, I was incredibly concerned that this is how the entire trip was going to be like and expressed my concerns to my boyfriend. If you're anything like me, or experienced any pain like this, you know the 'oh shit' feeling when you have plans and don't know if you should cancel and want to be good to your body but not let your significant other down but not feel guilty for putting your body through hell but not resenting your significant other for the choice you make. My brain already hurt like hell and I know he wanted to leave early in the morning; it was a 4 hour drive, we were hauling the boat and he planned to bass fish in the morning. I couldn't handle making up my mind and through much deliverance I finally said I would give him an answer in the morning if I made it through the night without having to go in. Although frustrated about plans changing, he understood and went to sleep. Tossing and turning most of the night, I cried, crossed my fingers, had nightmares and night sweats until I heard the birds chirp while finally passing out.
I woke up to a blaring alarm and immediately started running around. All the while I was thinking I couldn't believe I was putting myself through this. I couldn't believe I was stressing myself out to the brink of lunacy. On the other end of the spectrum I knew it was going to be an amazing trip and how much it meant to my boyfriend. Still with a pounding nerve-pain headache, I packed, showered, did all the chores and within 2 hours we were on the road. I packed pillows under both arms and on top of my stomach, wrapped myself in my minion blanket, took a Tizanidine, and barely opened my eyes until we arrived.
Let me give you a brief description of how I was BCP (Before Chronic Pain): I was adventurous. I loved road trips and staring out the window the entire trip. I didn't sleep in the car because I didn't want to miss anything. Car games were my favorite. I would be packed and ready to go days before the trip, and not be able to sleep the night before. I would want to do everything and anything on our agenda and then some. I was never a crabby person unless someone disrespected me. It was alright if something didn't go the right way. I was always described as bubbly, energetic and happy.
Re-reading that paragraph is extremely difficult. It's hard giving up the old me. The new me barely makes a 30 minute drive without wanting a nap. I have to pick and choose what I can do. If I have a long exhausting day of fun, I'll usually go through with it but be down and out for days to come. I dread trips because I can't return to my bed at night or my cats or the smell of my diffuser. I'm accepting the change little by little, but it's going to take awhile.
The guilt I felt on the trip was chest-gripping. I could barely help with anything. My boyfriend did this and that for me, and I'd want to cry. Thinking about it now makes me upset, guilty and grateful all at the same time. We couldn't go fishing early in the morning like he had hoped because I couldn't get up early enough. And when he finally did wake me up I was a tornado of bitchiness. I couldn't control it, it was like word vomit. In my head I kept thinking, why am I saying this? He is only trying to help. He is being so good, quit being such an ass! And yet another negative comment would come out of my mouth. Finally when I wasn't so achy and crabby, we would get the boat ready and drive to our destination. I would be rather quiet, considering I felt like a jerk for what just happened even though he never holds it against me. Then he asks if something is wrong, I say no, he knows I'm lying, and he thinks he did something else to hurt me. You see why I hate chronic pain?!
When the pain wore off and my energy level was back up, even for an hour or two, it was like nothing ever happened and we were a totally normal couple again. I felt normal again. We would joke and laugh and I could be myself. I felt total bliss in those moments, like maybe everything will be alright. Sadly, those moments didn't last long, and I was swallowed whole by fatigue or pain and the mute button would be pressed. Even then, he always made sure I was comfortable and happy; he made jokes and asked if I needed anything. He really is a trooper with this whole pain thing, and for that I am thankful.
We went to the wedding On Saturday and I was instantly exhausted. I'm sure it had something to do with getting ready and the stress of the 20 minute drive there. I was silent with my complaint because I was extremely grateful to be a part of our friend's wedding. I glanced around the aisles of people, wondering if anyone else had an invisible illness. Wondering if anyone else has been going through hell. Wondering if I wasn't alone at the wedding. Sometimes even when I'm with the closest people around me, I feel the most alone, and that's how I felt at that moment. Just as I wanted to cry, my boyfriend gently placed his hand over mine, gave it a little squeeze and flashed me a little smile. For the time being, it made me concentrate on my beautiful surroundings rather than feeling surrounded by foreign people.
While we were on the lake, I decided to take the time to thoroughly reflect and enjoy myself. The water was crystal clear, the waves lightly sweeping the shore. Eagles and seagulls and loons circled the waters searching for food. It was a breezy 80 degrees with a few clouds. The days were perfect. We fished, searched for sea glass, took pictures of our feathery friends and shared some beers. Those moments made me forget everything back home. It made having chronic pain so minuscule.
Every trip I take is going to be tough. Every trip is going to be different, both the destination and how I'm feeling. I think that's why I get so frustrated; I can't plan something because I don't know if I'm going to be in pain then. I get nervous thinking about the future and how I will be able to handle it. But I can't beat myself up for it. I'm going to have to accept that I will eventually have to say no, and let someone down, and feel guilty, and be upset; but that too shall pass, just like everything else.
Equanimity,
Kelsey
It all started when I found out I was taking a trip up north with my boyfriend for a friend's wedding outside of Boulder Junction, Wisconsin. He planned to go early and make the trip extra special with fishing and swimming. Early on, I was wary considering my health and energy was sliding downhill in the weeks leading up to it. The reason? I had just started Gabapentin and Dry Needling. The emotional side effects alone from Gabapentin were enough to cause suicidal thoughts that lingered while I was awake as well as off into dream land. I would daze off, picturing my hands around my own fragile neck under water, legs kicking, bubbles fluttering up to the surface. I would easily snap myself out of it, but the thoughts always crept in the shadows. Consciously I knew it was the medication; normally I would and could NEVER have a thought such as this. Medication usually plays a huge role in my mental state and emotions. Knowing that while trying new medicines always reassures me I'm not losing my mind (for now).
While combating the awful side effects of Gabapentin, I was dealing with countless flare ups from dry needling. I am not complaining, considering that't the point of the procedure: to piss the muscles off enough and make them repair themselves. However, I happened to develop the worst nerve pain of my life in my neck, collarbone, ear, face and head leading up to the trip.
This is what I was supposed to be doing the day prior to leaving:
Go to doctor appointment, run into work to fill out order, laundry, dishes, pack, clean litter boxes, fold blankets, sweep kitchen, change cat's water and blanket, pay medical bill, fix window screen, set up box fan in window.
This is what ended up happening:
Wake up with screaming headache, take Excedrin with breakfast. No one to drive 30 minutes to doctor so I take myself. Doctor appointment at the pain management clinic. Tell her I'm in pain so politely say make it quick and speak softly. Goes against wishes. Drive home and stop twice from eye balls ready to burst. Call boyfriend in tears. Make it home 50 minutes later. Strip clothes off. Ice on the face, Tramadol. Ice on the neck, peppermint oil on temples, pain cream on collarbone, Tizanidine. Heat on neck with tiger balm, re-arrange pillows, curl into ball. Crawl to bathroom from pain ready to puke. Lay on tiny bathmat holding legs and massaging temples while trying not to cry. Crawl back to bed. Question why I am doing all of this and if it's worth it. Tizanidine. Figuring out who will miss me the most, my cats or my parents. Snapping out of it and telling myself I'm strong. Laughing at the pain. Find comfortable spot. Pain relief for 7 minutes. Start packing. Lightning and thunder return and so do the tears. Tramadol. Considering going to the ER. Repeat.
Defeated, I was incredibly concerned that this is how the entire trip was going to be like and expressed my concerns to my boyfriend. If you're anything like me, or experienced any pain like this, you know the 'oh shit' feeling when you have plans and don't know if you should cancel and want to be good to your body but not let your significant other down but not feel guilty for putting your body through hell but not resenting your significant other for the choice you make. My brain already hurt like hell and I know he wanted to leave early in the morning; it was a 4 hour drive, we were hauling the boat and he planned to bass fish in the morning. I couldn't handle making up my mind and through much deliverance I finally said I would give him an answer in the morning if I made it through the night without having to go in. Although frustrated about plans changing, he understood and went to sleep. Tossing and turning most of the night, I cried, crossed my fingers, had nightmares and night sweats until I heard the birds chirp while finally passing out.
I woke up to a blaring alarm and immediately started running around. All the while I was thinking I couldn't believe I was putting myself through this. I couldn't believe I was stressing myself out to the brink of lunacy. On the other end of the spectrum I knew it was going to be an amazing trip and how much it meant to my boyfriend. Still with a pounding nerve-pain headache, I packed, showered, did all the chores and within 2 hours we were on the road. I packed pillows under both arms and on top of my stomach, wrapped myself in my minion blanket, took a Tizanidine, and barely opened my eyes until we arrived.
Let me give you a brief description of how I was BCP (Before Chronic Pain): I was adventurous. I loved road trips and staring out the window the entire trip. I didn't sleep in the car because I didn't want to miss anything. Car games were my favorite. I would be packed and ready to go days before the trip, and not be able to sleep the night before. I would want to do everything and anything on our agenda and then some. I was never a crabby person unless someone disrespected me. It was alright if something didn't go the right way. I was always described as bubbly, energetic and happy.
Re-reading that paragraph is extremely difficult. It's hard giving up the old me. The new me barely makes a 30 minute drive without wanting a nap. I have to pick and choose what I can do. If I have a long exhausting day of fun, I'll usually go through with it but be down and out for days to come. I dread trips because I can't return to my bed at night or my cats or the smell of my diffuser. I'm accepting the change little by little, but it's going to take awhile.
We went to the wedding On Saturday and I was instantly exhausted. I'm sure it had something to do with getting ready and the stress of the 20 minute drive there. I was silent with my complaint because I was extremely grateful to be a part of our friend's wedding. I glanced around the aisles of people, wondering if anyone else had an invisible illness. Wondering if anyone else has been going through hell. Wondering if I wasn't alone at the wedding. Sometimes even when I'm with the closest people around me, I feel the most alone, and that's how I felt at that moment. Just as I wanted to cry, my boyfriend gently placed his hand over mine, gave it a little squeeze and flashed me a little smile. For the time being, it made me concentrate on my beautiful surroundings rather than feeling surrounded by foreign people.
While we were on the lake, I decided to take the time to thoroughly reflect and enjoy myself. The water was crystal clear, the waves lightly sweeping the shore. Eagles and seagulls and loons circled the waters searching for food. It was a breezy 80 degrees with a few clouds. The days were perfect. We fished, searched for sea glass, took pictures of our feathery friends and shared some beers. Those moments made me forget everything back home. It made having chronic pain so minuscule. Every trip I take is going to be tough. Every trip is going to be different, both the destination and how I'm feeling. I think that's why I get so frustrated; I can't plan something because I don't know if I'm going to be in pain then. I get nervous thinking about the future and how I will be able to handle it. But I can't beat myself up for it. I'm going to have to accept that I will eventually have to say no, and let someone down, and feel guilty, and be upset; but that too shall pass, just like everything else.
Equanimity,
Kelsey
Thursday, June 25, 2015
Being 24.
Sometimes I wish I were still completely naive; sometimes I wish I were off adventuring the skyscrapers of Chicago or the mountains and valleys out west or even sitting at a cafe in Germany typing a new travel blog post, book or even a letter to my family. But I am here in Wisconsin dealing with the fear of leaving this area. The fear of developing Thoracic Outlet Syndrome on my right side. The fear of running down a country road solo and getting a blood clot with no one around to save me. The fear of running out of money with endless medical bills. The fear of not letting anyone take my heart because they will have to deal with my TOS. The fear of guilt when I look in the mirror and my reflection is once again a child, lollipop in mouth, covered in dirt. The fear of my freedom fully taken away. The fear of giving up being me.The last year has been quite challenging. I've been tested in several different ways. I've lost lots of loved ones, and gained a few new ones. I've felt true defeat, both mentally and physically. I've felt hatred for my body, but also undying love. I've built up my patience and positive mentality. I have been knocked down, only to pick myself back up. I've felt lost in a sea of fog, unknowing of the next storm and unsure if I will make it to shore in one piece. Will I battle through the waves endlessly on driftwood, unable to grasp the life I once always held onto? Or will I sail to safety?
I ponder this quite often, all my trials and tribulations. I often question most experiences. I wonder if other people my age learn life lessons such as the ones I'm about to share with you or if they learn them years down the road, sometimes too late. There are days I feel so alone, even knowing damn well that countless people have been burdened with the same condition I have. I am a part of the groups and I have become friends with some and talk to others when they seek advice. I look up statistics. I always try to be positive for other people's benefit. I write this blog and share it to comfort others with chronic pain. Sometimes I think it's what I was meant to do during my time on this planet.
I would like to share with you a reflection. This entails secrets in life that I've learned already at the ripe age of 24. Secrets we all as human beings should learn through the course of life. However, I've learned them the incredibly hard way, and all at once.
Find the silver lining.
Empathy.
Not everyone in life is going through a chronic pain condition. Not everyone in life has to completely plan out a day to make sure there will be enough energy. Not everyone has to make sacrifices and give up things they love. But everyone is going through their own battles, whether big or small. I went to the doctor for a routine medication check up and my nurse wasn't the daisy of all daisies. In fact, she was incredibly short with me, barely looked me in the eye and kept cutting me off. Instead of looking at it as complete and utter disrespect, I took it as an initiative to continue being polite. As I was driving home, I realized that I have no idea what happens before she arrives to work, gets into the examination room and what happens when she goes home from work. She may have had one of the worst mornings of her life and couldn't separate work life from home life. As my condition continues and days get what seems more complicated, I find myself understanding a lot more about people's situations and lives. We all may be battling wars big or small and in separate ways, but it doesn't hurt to send a smile or a 'hello' someone's way.
Patience.
The waiting game, as I like to call it, is the time frame between doctor appointments. I make a doctor appointment, wait for insurance to accept while getting updates back and forth from them to the doctor office. I meet with the doctor and he or she tells me there is only so much one doctor can do before handing me off to another without fully knowing what my body is up to. I say, thank you for your help, I appreciate the referral to the next doctor, and leave completely distraught. Then I make a phone call to my primary doctor to put in the referral for the next doctor. Time ticks away, sometimes weeks, as my insurance company reviews the next doctor. They finally accept and upon calling the new doctor's office, I find out the next doctor appointment is weeks or months out. Upon that appointment, I get a new medication or new injection and wait to see if it works while waiting out the side effects before seeing another doctor. This is a meticulously exhausting routine. You'd think I would give up hope and melt to a puddle on the exam floor, but I always remind myself that my newly found patience will carry me through. I remind myself that the world doesn't revolve around me and sometimes life isn't going to go my way. Patience will carry through and whatever happens, happens.
Let yourself feel.
One of the biggest hardships I have is bottling my emotions. Sometimes I'm so overwhelmed trying to figure everything out that I don't take time to feel the raw emotions running through my body. If I find a beautiful scene outside while walking, I take time to completely appreciate and feel bliss before moving on. If I need to cry because I feel sorry for my body, I let the tears run. If I'm angry with someone for interrupting me, I speak my mind. It's time to cut the crap; I'm 24 and I'm never going to get any younger. Why go through life walking on egg shells around your own mind? Let yourself feel, and your body will thank you.
Dance.
Sometimes, life never seems to be going in the right direction. Sometimes, everything seems to be causing pain, negativity, stress and hardship. And sometimes, you need to dance. I've found myself scanning the Pandora on my iPod, unaware of how I became utterly miserable. I shake my head as if I'm ridding the thought and turn on an upbeat station. I grab Ellington in my arms and start the cha cha with his furry little paws. For a few minutes, all my worries flow into the melody that is dancing around my small Wisconsin apartment. I slide my feet on the linoleum floor as all the stress escapes from my waving limbs. For a few minutes, my mind is at ease and I escape the pain. Once the music stops, and I am again faced with the reality of my body pain. But I am overwhelmingly happier. Music has always been an outlet for my emotions, and I am never going to take it for granted. Every person going through something difficult should try to find their 'cha-cha.' I promise you: In the end, it helps.
Enjoy and respect the body.
I remind myself every day to listen to my body. If I'm tired, I need to rest. If my collarbone hurts, I need to ice it. If I'm stressed, I need to take a deep breath and do something that makes me happy. Of all the things I'm going through, stress is the last thing I want to affect my body and mind. I love my body, even if it's a little broken. Here's what happened when I developed Thoracic Outlet Syndrome: I was trapped with myself every day, pain free or not. My mind wanted to be a free spirit but my body was plastered onto my bed, aching for pain meds and relief. I'm anxious because I can't escape my own skin. But then I looked at the big picture and started accepting my body for what it is: Beautiful. Why lay in pain hating the body, when it's only trying to support me and heal as fast as it can? When my mind wonders from optimism, I ground myself by reciting what I love most about myself: My soft skin mixed from both of my parent's beautiful genes, my ability to tickle my own feet, my curly unruly hair, my ears and especially my heart. In my mind, one truly cannot be happy until one loves every ounce, vessel, pore and fingernail on the body. I respect my body, even the mangled first rib that was causing the perfect storm to rip through my entire being.
And finally, equanimity
If you notice on my posts, I usually sign off with "Equanimity." The definition is:
noun
I practice equanimity every day. It's my 'bliss' word to calm me down in difficult situations. Saying it out loud or writing it in cursive instantly relaxes me and reminds me that life is unpredictable and I need to let fate take the wheel. I cannot simply control all aspects of my life; I cannot control my pain, fatigue, and dizziness just like I cannot control which way the wind blows. But I can control how I battle each and every gust. And I handle that with equanimity.
Equanimity,
Kelsey
Patience.
The waiting game, as I like to call it, is the time frame between doctor appointments. I make a doctor appointment, wait for insurance to accept while getting updates back and forth from them to the doctor office. I meet with the doctor and he or she tells me there is only so much one doctor can do before handing me off to another without fully knowing what my body is up to. I say, thank you for your help, I appreciate the referral to the next doctor, and leave completely distraught. Then I make a phone call to my primary doctor to put in the referral for the next doctor. Time ticks away, sometimes weeks, as my insurance company reviews the next doctor. They finally accept and upon calling the new doctor's office, I find out the next doctor appointment is weeks or months out. Upon that appointment, I get a new medication or new injection and wait to see if it works while waiting out the side effects before seeing another doctor. This is a meticulously exhausting routine. You'd think I would give up hope and melt to a puddle on the exam floor, but I always remind myself that my newly found patience will carry me through. I remind myself that the world doesn't revolve around me and sometimes life isn't going to go my way. Patience will carry through and whatever happens, happens.Let yourself feel.
Dance.
Enjoy and respect the body.
And finally, equanimity
If you notice on my posts, I usually sign off with "Equanimity." The definition is:
1.
mental or emotional stability or composure, especially under tension or strain;
calmness; equilibrium.
Equanimity,
Kelsey
Monday, March 23, 2015
5
I receive a lot of comments about my condition and situation. Recently, I've experienced a lot of negativity from bystanders since I started volleyball and being active in my old lifestyle. Here are a few that have hit home. People with chronic pain having feelings too, you know.
1. I am judged.
"How come you can play volleyball but still be in so much pain?"
My pain is always present. The severity of pain changes. The location of pain is random. As I sit here typing, I have an ice pack resting on my collarbone that feels like it's being pulled out by a pliers. My chest is tight, making it hard to take a deep breath. My fingers on the affected side are trembling and weak, causing several typos that I eventually have to fix. I can't make a strong fist. However, my mind is as ease as I listen to Ed Sheeran Pandora with the scent of Tiger Balm lingering out of my clothing. I am happy. I am alive. I am still a human being. It hurts when people judge me without looking at the bigger portrait first. Picture your prized possession in life. Something that brings you incredible satisfaction and pure joy. Hold it in your hand. Now picture a shadow coming out from the darkest depths of hell and taking it from your grasp, swallowing it whole. That's what would happen if I had to give up volleyball. I wouldn't be me anymore. I wouldn't be Kelsey.
2. I am bullied.
"How can you honestly be in pain? You've got to be faking it."
*Insert a huge amount of sarcasm here*
Yes, I have been ruining my own life for 4 years. I have lost friends, family, boyfriends out of pure laziness. I have put my career on hold just to move back home and become miserable. I sit at home and watch movies because I find being alone enjoyable. I go to all these doctor appointments because I love sitting in ugly gowns for the hell of it.
The truth is, this condition has taken over my life for the last 4 years. I have chosen to cut communications with negative people in my life, and some have chosen to cut me because I am just too much to handle. I needed to move back home for the flexibility of my job so I can take off for appointments and also so my family can drive me to distant appointments. The flare-up days make me lay in bed, unable crawl to my living room or open my eyes to even watch TV. I mentally have to prepare for each appointment. I have to prepare for a let down, or a referral to another doctor that won't know anything about TOS. I have to prepare to re-tell my story to both the nurse and doctor. Negative thoughts arise about people that have hurt me in the past every time I repeat it. It's extremely exhausting.
3. I've been given unrelated advice.
"One time I broke my ankle and physical therapy and Advil really helped me. Have you tried that?"
I am extremely grateful for people wanting to help. I am humbled when people come of the darkness to offer their advice. But until you have a chronic pain condition, understanding will never fully be 100%. Having a chronic pain condition is like a bird having a broken wing that cannot be mended. They are able to live. They are able to get off the ground every once in awhile. They are still able to walk around. But will never have 100% quality of life. I have tried just about every outlet for pain-relief. I learn to live with it. I can't have just one primary doctor taking care of me like you would for a cold or broken bone. I have to bounce around to several doctors because several health factors are present.
4. I wouldn't wish this condition on my worst enemy.
"Don't you ever wish people would get this for a day just so they understood?"
The quote has been said by my lips out of anger a handful of times and has also been said from many fellow chronic pain patients. However, I regret it instantly after. I could never picture one of my friends or family members suffering this much, let alone the nasty people that have tainted my life. The journey I've gone through to this point has been miserable and exhausting. Like a lot of TOSers, people around us don't understand fully what we go through. So it's incredibly hard not to wish negative thoughts on others that brush us off. I am a forgiving person, but some comments are still burning my blood. Instead of being a pushover to forgive, I simply rise above and write it off as ignorance while sending them positive vibes to their lives. It's the healthiest way for me to move on. In the future, I hope there is more awareness for this condition, let alone all of the other invisible illnesses/conditions. For now, I will deal with the ignorance with equanimity.
5. I haven't given up yet; and I don't plan to.
"Don't you ever feel like enough is enough? Don't you feel like just giving up?"
Truthfully, I am strong, even if I am broken. I've endured lots of pain and suffering. But who hasn't at least once in their life? Sometimes I cannot get out of bed because the depression and pure exhaustion and the condition ties my wrists and locks me in my room, away from the world. Sad to say, but I am incredibly used to the pain, as irritating as it is. It's my least concern. The greatest pain and suffering comes from the bullying, judgement and misunderstanding I experience. It takes such a toll on my mind and body. Being put down is a sick thing to do. The mind is left with such a sick and foggy feeling. However, the mind is a powerful part of the body. The audience is watching, standing by waiting for me to crumble to the ground. Waiting for me to break and give in to the dark depths of my pain, anger, sadness and exhaustion. I'm not quite at that point yet. So TOS, you can try, but you can't break this girl.
Equanimity,
Kelsey
1. I am judged.
"How come you can play volleyball but still be in so much pain?"
My pain is always present. The severity of pain changes. The location of pain is random. As I sit here typing, I have an ice pack resting on my collarbone that feels like it's being pulled out by a pliers. My chest is tight, making it hard to take a deep breath. My fingers on the affected side are trembling and weak, causing several typos that I eventually have to fix. I can't make a strong fist. However, my mind is as ease as I listen to Ed Sheeran Pandora with the scent of Tiger Balm lingering out of my clothing. I am happy. I am alive. I am still a human being. It hurts when people judge me without looking at the bigger portrait first. Picture your prized possession in life. Something that brings you incredible satisfaction and pure joy. Hold it in your hand. Now picture a shadow coming out from the darkest depths of hell and taking it from your grasp, swallowing it whole. That's what would happen if I had to give up volleyball. I wouldn't be me anymore. I wouldn't be Kelsey.
2. I am bullied.
"How can you honestly be in pain? You've got to be faking it."
*Insert a huge amount of sarcasm here*
Yes, I have been ruining my own life for 4 years. I have lost friends, family, boyfriends out of pure laziness. I have put my career on hold just to move back home and become miserable. I sit at home and watch movies because I find being alone enjoyable. I go to all these doctor appointments because I love sitting in ugly gowns for the hell of it.
The truth is, this condition has taken over my life for the last 4 years. I have chosen to cut communications with negative people in my life, and some have chosen to cut me because I am just too much to handle. I needed to move back home for the flexibility of my job so I can take off for appointments and also so my family can drive me to distant appointments. The flare-up days make me lay in bed, unable crawl to my living room or open my eyes to even watch TV. I mentally have to prepare for each appointment. I have to prepare for a let down, or a referral to another doctor that won't know anything about TOS. I have to prepare to re-tell my story to both the nurse and doctor. Negative thoughts arise about people that have hurt me in the past every time I repeat it. It's extremely exhausting.
3. I've been given unrelated advice.
"One time I broke my ankle and physical therapy and Advil really helped me. Have you tried that?"
I am extremely grateful for people wanting to help. I am humbled when people come of the darkness to offer their advice. But until you have a chronic pain condition, understanding will never fully be 100%. Having a chronic pain condition is like a bird having a broken wing that cannot be mended. They are able to live. They are able to get off the ground every once in awhile. They are still able to walk around. But will never have 100% quality of life. I have tried just about every outlet for pain-relief. I learn to live with it. I can't have just one primary doctor taking care of me like you would for a cold or broken bone. I have to bounce around to several doctors because several health factors are present.
4. I wouldn't wish this condition on my worst enemy.
"Don't you ever wish people would get this for a day just so they understood?"
The quote has been said by my lips out of anger a handful of times and has also been said from many fellow chronic pain patients. However, I regret it instantly after. I could never picture one of my friends or family members suffering this much, let alone the nasty people that have tainted my life. The journey I've gone through to this point has been miserable and exhausting. Like a lot of TOSers, people around us don't understand fully what we go through. So it's incredibly hard not to wish negative thoughts on others that brush us off. I am a forgiving person, but some comments are still burning my blood. Instead of being a pushover to forgive, I simply rise above and write it off as ignorance while sending them positive vibes to their lives. It's the healthiest way for me to move on. In the future, I hope there is more awareness for this condition, let alone all of the other invisible illnesses/conditions. For now, I will deal with the ignorance with equanimity.
5. I haven't given up yet; and I don't plan to.
"Don't you ever feel like enough is enough? Don't you feel like just giving up?"
Truthfully, I am strong, even if I am broken. I've endured lots of pain and suffering. But who hasn't at least once in their life? Sometimes I cannot get out of bed because the depression and pure exhaustion and the condition ties my wrists and locks me in my room, away from the world. Sad to say, but I am incredibly used to the pain, as irritating as it is. It's my least concern. The greatest pain and suffering comes from the bullying, judgement and misunderstanding I experience. It takes such a toll on my mind and body. Being put down is a sick thing to do. The mind is left with such a sick and foggy feeling. However, the mind is a powerful part of the body. The audience is watching, standing by waiting for me to crumble to the ground. Waiting for me to break and give in to the dark depths of my pain, anger, sadness and exhaustion. I'm not quite at that point yet. So TOS, you can try, but you can't break this girl.
Equanimity,
Kelsey
Friday, February 27, 2015
Delicate Body
I promise you, this one has a happy ending.
After waiting at the clinic for 90 minutes, I walked out with 400 pages of doctor notes and 2 out of 4 disks (they have to mail the other ones because it would take another hour to download) of all my Thoracic Outlet Syndrome/shoulder/pain related history, not counting my notes from my surgeon, 2 other doctors out of network and two years of visits/tests/evaluations up in Minnesota.
As I was sitting in the clinic waiting patiently in pain, I was angry. I could barely keep my head up because it felt like 100 pounds that my neck could not support. I was leaning my side on the back of the couch, using the armrest for my back. I had tears in my eyes from the burning pain in my ears and sharp stabs in my temples. I would get a look or stare-down from someone every so often. I was slouching. I longed for my yoga pants instead of my baggy jeans. My whole body ached; including my heart. It was a rough week both mentally and physically. I played volleyball this week, and had drinks after with my parents, brother, and friends. Later I was told from a friend I was faking it. That he won't feel sorry for me because I drink like 'a fish' and play volleyball but can't put in a full week of work. That I was an immature 23-year old that didn't have her shit together. And maybe he's right, maybe I don't. But nothing was stable anymore. I didn't even know if I would be able to make it the next few days without losing my mind. I was on an abandoned ship in the ocean, unable to control the waves, storms that were approaching, or the direction I was heading.
Signing off for my records, I held the heaping pile of papers in my hand. I couldn't believe some of the comments and diagnosis and how many times my condition was ignored or brushed off. My stomach sunk. I've been staying as positive as I can about the situation. I say "tomorrow is a new day" or "I will get better eventually." I put on a mask. I don't believe myself every time I say it. The truth is, I don't believe it because I can't. There were a lot of pieces to this puzzle that I haven't found quite yet. But I finally found a couple that would definitely help my journey.
Today was bittersweet. I pondered this while crawling into bed, sore from my massage therapist appointment. I went through the motions of putting essential oils in my diffuser (lavender for sleep, thieves for immune support). I lined up my night stand with more oils, water, stopwatch, prescriptions and vitamins. I rubbed Tiger Balm on my neck, shoulder, scapula, ribs and bicep. I massaged my temples with lavender and sandalwood oil. Taking a Tramadol, vitamin C and Magnesium, I finally opened up the disks that contained complete brilliance.
I didn't want me to be a mystery to myself anymore. I want to painstakingly read every doctor note and look at every image and scan of my body. To me, it's going to be part of my healing process of letting go. I've held onto anger for so long towards my body. But seeing those scans, seeing every intricate bone, vessel, curve and tissue in my body made me realize how delicate the human body truly is and how I have to forgive mine. One image made me stop in my tracks. It was an MRI comparison of my arm at my side as opposed to above my head. This is where my TOS was confirmed for ATOS and VTOS, even though I was already diagnosed with NTOS. 50% narrowing of the vein and artery meant I had to have surgery, or I could have ended up with a life-threatening blood clot down the road, undetectable without searching.
But that didn't surprise me. What really caught my attention was something else. Something that I have felt my whole life but haven't yet physically seen. My heart. It was right there, on my screen. I gazed at it while I felt it pound in my chest. Something so silly, yet so marvelous finally came to my attention. My heart, that has grasped so tightly to crumbling friendships, pounded for breakups, and fluttered through doctor appointments, never had a chance to heal. It never had a chance to be appreciated and loved and recognized as the one part that has been keeping me together, along with my sometimes-crazy-yet-how-could-I-not-be-mind. Seeing these images of my body, made me feel like a human again; not just a zombie. Going through the images millions of times at every angle and every zoom possible made me acknowledge the beauty of my body. It opened my eyes to a new perspective on my pain and suffering and the artistry of the body itself. I may not forgive it 100% yet, and it may take awhile, but this is definitely a start. So I say this with the utter most honesty and purity of heart: Tomorrow IS a new day.
Equanimity,
Kelsey
After waiting at the clinic for 90 minutes, I walked out with 400 pages of doctor notes and 2 out of 4 disks (they have to mail the other ones because it would take another hour to download) of all my Thoracic Outlet Syndrome/shoulder/pain related history, not counting my notes from my surgeon, 2 other doctors out of network and two years of visits/tests/evaluations up in Minnesota.
As I was sitting in the clinic waiting patiently in pain, I was angry. I could barely keep my head up because it felt like 100 pounds that my neck could not support. I was leaning my side on the back of the couch, using the armrest for my back. I had tears in my eyes from the burning pain in my ears and sharp stabs in my temples. I would get a look or stare-down from someone every so often. I was slouching. I longed for my yoga pants instead of my baggy jeans. My whole body ached; including my heart. It was a rough week both mentally and physically. I played volleyball this week, and had drinks after with my parents, brother, and friends. Later I was told from a friend I was faking it. That he won't feel sorry for me because I drink like 'a fish' and play volleyball but can't put in a full week of work. That I was an immature 23-year old that didn't have her shit together. And maybe he's right, maybe I don't. But nothing was stable anymore. I didn't even know if I would be able to make it the next few days without losing my mind. I was on an abandoned ship in the ocean, unable to control the waves, storms that were approaching, or the direction I was heading. Signing off for my records, I held the heaping pile of papers in my hand. I couldn't believe some of the comments and diagnosis and how many times my condition was ignored or brushed off. My stomach sunk. I've been staying as positive as I can about the situation. I say "tomorrow is a new day" or "I will get better eventually." I put on a mask. I don't believe myself every time I say it. The truth is, I don't believe it because I can't. There were a lot of pieces to this puzzle that I haven't found quite yet. But I finally found a couple that would definitely help my journey.Today was bittersweet. I pondered this while crawling into bed, sore from my massage therapist appointment. I went through the motions of putting essential oils in my diffuser (lavender for sleep, thieves for immune support). I lined up my night stand with more oils, water, stopwatch, prescriptions and vitamins. I rubbed Tiger Balm on my neck, shoulder, scapula, ribs and bicep. I massaged my temples with lavender and sandalwood oil. Taking a Tramadol, vitamin C and Magnesium, I finally opened up the disks that contained complete brilliance.
I didn't want me to be a mystery to myself anymore. I want to painstakingly read every doctor note and look at every image and scan of my body. To me, it's going to be part of my healing process of letting go. I've held onto anger for so long towards my body. But seeing those scans, seeing every intricate bone, vessel, curve and tissue in my body made me realize how delicate the human body truly is and how I have to forgive mine. One image made me stop in my tracks. It was an MRI comparison of my arm at my side as opposed to above my head. This is where my TOS was confirmed for ATOS and VTOS, even though I was already diagnosed with NTOS. 50% narrowing of the vein and artery meant I had to have surgery, or I could have ended up with a life-threatening blood clot down the road, undetectable without searching.
But that didn't surprise me. What really caught my attention was something else. Something that I have felt my whole life but haven't yet physically seen. My heart. It was right there, on my screen. I gazed at it while I felt it pound in my chest. Something so silly, yet so marvelous finally came to my attention. My heart, that has grasped so tightly to crumbling friendships, pounded for breakups, and fluttered through doctor appointments, never had a chance to heal. It never had a chance to be appreciated and loved and recognized as the one part that has been keeping me together, along with my sometimes-crazy-yet-how-could-I-not-be-mind. Seeing these images of my body, made me feel like a human again; not just a zombie. Going through the images millions of times at every angle and every zoom possible made me acknowledge the beauty of my body. It opened my eyes to a new perspective on my pain and suffering and the artistry of the body itself. I may not forgive it 100% yet, and it may take awhile, but this is definitely a start. So I say this with the utter most honesty and purity of heart: Tomorrow IS a new day.
Equanimity,
Kelsey
Friday, February 20, 2015
A letter to Healthcare Insurance
My initial visit and evaluation to Dr. Ketchum at Froedtert was in January. I have the 'Navigate' plan where I have to be referred to EVERY doctor by my primary care physician in order for insurance to cover it. They didn't cover my bill and now I have to appeal to them. Here is my letter:
-Kelsey
Let me give you a recap
of being 23 and living with a chronic pain condition that is swallowing my life
whole:
As you have probably
seen by my records, I go to the doctors quite often for my Thoracic Outlet
Syndrome and Chronic Pain. I make phone calls to different doctors every day at
different facilities and talk to different nurses and receptionists who think
I’m full of crap because I have an invisible illness. I have to research treatments and doctors I need
to go to in my spare time because I cannot spend every waking moment in a
doctor’s office. I miss work days for
doctor appointments and unbearable pain.
When I can go to work, I usually have to force myself to work through
the pain. Every single dollar I make is
ever so difficultly made.
So when I find that my
insurance company that I have had for years didn’t receive a referral from my
primary care physician and a $612.00 bill is sitting in front of me, I become
perturbed. While trying to get ahead
with my bills by working through the pain, balancing doctor’s visits, physical
therapy and managing everything at home, I find myself not being able to get
ahead of my bills when issues like this arise.
I’m trying my hardest to get better so I never have to see an inside of
another doctor’s office again or wear an itchy gown or be injected with more
medications that may or may not help me.
Trust me; I’m as sick of it as you probably are reading this. But I cannot do that without your help.
Last July, I had
surgery for a first rib resection. Originally
we thought it would take away many of the symptoms I’ve been experiencing. However, it failed to do so. Since surgery, I have been seeking treatments
such as massage therapy, chiropractor, physical therapy, trigger point
injections, cortisone injections and now botox injections. If I wouldn’t be trying the injections, I
would have to go back to testing such as MRI’s, CTs and a variety of
specialists. Instead, I am trying to
pinpoint the problem as fast and as accurate I can, while minimizing costs and
as little amount of doctors as I can.
Please re-consider this
bill. I know you have busy lives and
have a lot of customers to deal with on a daily basis. All I’m trying to do is get my life back and
try to solve my chronic pain. With your
help, I would have to worry about one less bill and continue my search for what
you would experience as a normal life, hopefully pain-free.
Equanimity.
-Kelsey
Botox Injections
After a month and a half of dealing with Froedtert and my insurance company, I had my botox injections on February 19th. The wait was agonizing. On top of working, babysitting and volleyball, I still had to balance seeing my family, physical therapy appointments and prepping for our business trip in the beginning of March. I was exhausted. I broke down. I wanted to give up numerous times. I continuously thought of my other TOS Warriors and wondered what their day was like. Then for them, I picked myself off the floor and kept going.
Originally they had me scheduled for March 24th, a whole month away. I asked the nurse to relay a message to my doctor explaining that I couldn't work full time at this point or even manage household activities. I honestly still don't know how I have a roof over my head with barely being able to work. He pulled some strings thankfully. Upon waiting for scheduling to call, I decided it was time to start taking Tramadol 30 mg again just to get through the days and waited for February 19th to arrive.
Just like any other early morning, I had to drag myself out of bed, avoid doorways and attempted to make myself presentable! The trip was much more manageable now that dad and I knew the route and construction, as well as where to go when we arrived. The wait was unbearable, considering the pain was ten times worse than when I saw him in January. After waiting patiently for 45 minutes, I finally found myself in the exam room fidgeting with my bracelet and bouncing my leg up and down.
I walked in the clinic with high anxiety and fear but I left
feeling reassured. On the way home, my
dad and I stopped at Einstein Bagel Bros for a Nova Lox and coffee as a treat. I felt weakness while chewing from the
injection in my middle scalene but it eventually went away. I mentioned to my dad I felt weird numerous
times, but couldn't explain why. On the
1 hour trip home we listened to oldies and talked about the intricate details
of our upcoming business trip all the while I tried staying silently positive.
I went to work for a few hours before I had to babysit. I noticed the top of my shoulder started having spasms. After I have physical therapy,
massage therapy or injections, it normally tries to reject treatment and
cramp. However, botox is pretty potent. By the time I arrived at babysitting it felt
like someone was gripping the top of my shoulder with sharp nails. I took deep breaths and tried to relax as
much as possible. Eventually, nerve pain
carried over into my right arm and left me a little too stressed out.
A few hours after the injections, the swelling and fatigue began. Knowing I didn't want to spend the night alone in my apartment, I ended up having a movie night with my best friend Heidi so I could relax and give my body some time to calm down. Nights with her are always a joy; she takes my mind off of everything and gives me a positive perspective on my situation. We watch the most far-out-there movies possible. It is the complete easiest way to get my mind off of my stressful life for a few hours.
Friday morning, I woke up in pain which was expected. I was sore, a little cranky and ready for some breakfast. Heidi and I went to a local joint for our favorite meal, biscuits & gravy, bacon, eggs and coffee. Upon completing breakfast, I knew the soreness wasn't going away and the sharp pains were getting worse. I went home to my futon-now-bed in the living room to ice my neck and to stretch, but the rest of the day was a blur. My neck felt weak. My eyes were heavy. I had taken Tramadol earlier in the morning but it failed to support any part of my body through the pain. I was angry knowing my body was going to disappoint me again and get sick from another round of injections. Episodes of Bonanza, Gunsmoke and Wonder Woman were blaring in the background of my dreams as I drifted all day feeling confined in the walls of my apartment. The transition from day to night went unnoticed.
Sunday morning, I instantly took Tramadol and stayed put on the couch, waiting for the spins. Like clockwork, they hit and took me out. I sat crying. On my best friend's couch. So much sharp unbearable pain. She stared, almost like she was going to cry, unable to fix me. She was unable to fix her broken other half. Comforting me as much as possible, I told her I was better even though I was lying through my teeth. I know she wouldn't have been able to leave for work had she thought otherwise. The pain was from my ear to my arm, my neck to my tailbone, my rib cage to hip bones. It was sharp and nasty. It was as if I wasn't in my own body anymore. Eventually I put my TENs Unit on just to keep my body distracted. It only works for so long.
Originally they had me scheduled for March 24th, a whole month away. I asked the nurse to relay a message to my doctor explaining that I couldn't work full time at this point or even manage household activities. I honestly still don't know how I have a roof over my head with barely being able to work. He pulled some strings thankfully. Upon waiting for scheduling to call, I decided it was time to start taking Tramadol 30 mg again just to get through the days and waited for February 19th to arrive.
Just like any other early morning, I had to drag myself out of bed, avoid doorways and attempted to make myself presentable! The trip was much more manageable now that dad and I knew the route and construction, as well as where to go when we arrived. The wait was unbearable, considering the pain was ten times worse than when I saw him in January. After waiting patiently for 45 minutes, I finally found myself in the exam room fidgeting with my bracelet and bouncing my leg up and down.
I talked with Ketchum’s assistant Resident about where the
pain is. She examined my muscles and
performed a strength and reflex test.
When Ketchum came in, he went over what the Resident talked about
including the risks. We talked about
injecting the Pectorilis Minor but he wanted to try other groups of muscles
first to see if he could stop that pain be hitting another trigger point. He felt around for sore spots or triggerpoints that were causing referred pain and found my locked muscle (as I call it)
or better known as ‘serratus superior.’ Preparation
and conversation between both doctors took roughly 20 minutes.
Two electro pads were placed on my left hand with wires
leading to the EMG device. He decided to
inject that muscle along with the levator scapulae, upper/lower trapezius and
middle scalene. I didn’t need to change
into one of those itchy gowns that I love, and I was thankful considering I was
freezing already. Ketchum felt around
for sore spots and confirmed them with me.
The assistant sprayed me with numbing solution and Ketchum injected the
botox immediately after at each site.
When he injected my upper trapezius, I felt burning pain go down to my
scapula. When he injected my lower
trapezius, I felt the pain go straight up into my head. When Ketchum injected my levator scapulae, it
honestly felt like someone was digging around on my nerve, but only with slight
pain. I instantly felt a sick, heavy
feeling in my arm and suddenly it was gone.
The injections themselves only took 15 minutes.
Ketchum discussed that he would like to get a follow-up from
me within 6 weeks (earlier if my symptoms worsen) via email or voicemail. I found this super convenient and efficient
because I wouldn’t appreciate driving 90 minutes for a 5 minute conversation
telling him I’m fine. The effects of the
injections could take up to 10 days to kick in and can last between 6 weeks to
3 months. During that time period I will
start physical therapy to strengthen my muscles that are weak. I cannot receive more injections before the 3
months are up, no matter how much pain I’m in, but if that’s the case we will
be able to find a different pain medication.
Dr. Ketchum would like me to try 3 rounds of injections which will take
9 months to complete. Upon completing
the 9 months, we will re-evaluate whether the injections had a positive,
negative or neutral impact on me. If
they worked, I will continue them and continue getting stronger. If they don’t have any effect, I will start
my journey of testing for an underlying problem or another diagnosis.
I walked in the clinic with high anxiety and fear but I left
feeling reassured. On the way home, my
dad and I stopped at Einstein Bagel Bros for a Nova Lox and coffee as a treat. I felt weakness while chewing from the
injection in my middle scalene but it eventually went away. I mentioned to my dad I felt weird numerous
times, but couldn't explain why. On the
1 hour trip home we listened to oldies and talked about the intricate details
of our upcoming business trip all the while I tried staying silently positive.  |
| No visible injection sites but swollen |
 |
| My left shoulder was injected. It's swollen and raised from the injections but also from tight muscles. |
A few hours after the injections, the swelling and fatigue began. Knowing I didn't want to spend the night alone in my apartment, I ended up having a movie night with my best friend Heidi so I could relax and give my body some time to calm down. Nights with her are always a joy; she takes my mind off of everything and gives me a positive perspective on my situation. We watch the most far-out-there movies possible. It is the complete easiest way to get my mind off of my stressful life for a few hours. Friday morning, I woke up in pain which was expected. I was sore, a little cranky and ready for some breakfast. Heidi and I went to a local joint for our favorite meal, biscuits & gravy, bacon, eggs and coffee. Upon completing breakfast, I knew the soreness wasn't going away and the sharp pains were getting worse. I went home to my futon-now-bed in the living room to ice my neck and to stretch, but the rest of the day was a blur. My neck felt weak. My eyes were heavy. I had taken Tramadol earlier in the morning but it failed to support any part of my body through the pain. I was angry knowing my body was going to disappoint me again and get sick from another round of injections. Episodes of Bonanza, Gunsmoke and Wonder Woman were blaring in the background of my dreams as I drifted all day feeling confined in the walls of my apartment. The transition from day to night went unnoticed.
Waking up Saturday morning to both of my boys at my feet was comforting. Slowly, I sat up on my futon, only to be greeted by a pounding face and dizzy eyes. I took a few minutes to level myself out so I could feed my cats and get more water. My legs were wobbling as I filled up my water bottle. I grabbed a yogurt and spoon before scuffling my way back into the living room. Did I get hit by a train? Did I sleep-sprint? Why is my whole body nauseous? I couldn't understand why I felt like this. Soon after eating my Greek delight and taking a Tramadol, I closed my eyes only to drift in dreamland for another 2 hours.
Awakening in a cold sweat, I felt unaware of where I was. Pain was creeping up my spine, into my head, engulfing my ears with flames and burning my eyes with poison. I
stumbled to my medicine cabinet, only to find that I had an ample amount of muscle relaxers and nothing for nerve pain. I grabbed Excedrin and an ice pack. In the child's pose on my futon and ice pack on the back of my neck, I couldn't control my emotions. I was upset I didn't feel well. I was upset my head felt terrible. I was upset with life and everyone that didn't have to deal with this bullshit, but immediately feeling the guilt seep in, I retracted my selfish thought. I wanted to scream, but knowing that would only make it worse, I swallowed my frustration.
My main frustration was at myself. I was mad I didn't find a specialist for TOS right away instead of bouncing around doctors. I wondered if my friends with TOS have crazy off-the-wall thoughts like I do. I was mad that I didn't ask for nerve-pain medication at the last appointment. I was mad I had to go through this. Sick of hearing my own mind complain, I finally cried myself to sleep.
At 10:00 p.m. I woke up startled by a phone call from Heidi. She had just got done with work and needed some consoling herself, so I crawled from room to room collecting everything I needed to spend the night. Thankfully, she lives 20 Mississippi's away (aka 3 blocks.) Another movie night was in the making with lots of venting and unhealthy snacks. Before both of us knew it, we were passed out with the movie menu screen on repeat.
Sunday morning, I instantly took Tramadol and stayed put on the couch, waiting for the spins. Like clockwork, they hit and took me out. I sat crying. On my best friend's couch. So much sharp unbearable pain. She stared, almost like she was going to cry, unable to fix me. She was unable to fix her broken other half. Comforting me as much as possible, I told her I was better even though I was lying through my teeth. I know she wouldn't have been able to leave for work had she thought otherwise. The pain was from my ear to my arm, my neck to my tailbone, my rib cage to hip bones. It was sharp and nasty. It was as if I wasn't in my own body anymore. Eventually I put my TENs Unit on just to keep my body distracted. It only works for so long.
I honestly think getting the injections gave me a huge flare-up. As sickening and upsetting as that is, I'm still hoping for it to turn around. I'm crossing my fingers that the Botox magically gives me relief, even if it's for a few weeks. I need a break from what my body is going through; physically and mentally.
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