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
Showing posts with label tossucks. Show all posts
Showing posts with label tossucks. Show all posts
Tuesday, February 9, 2016
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.
Friday, January 30, 2015
Driftwood
I sit here staring at the egg-white walls of my bedroom. My cell phone, propped on the coffee table in my living room, is supplying me with unlimited Ray Charles Pandora. It is interrupted as a familiar ringtone echoes through my apartment. It was my Mom's. One ring. Two. Three. Four. Hound Dog by Elvis Presley fades back in as guilt swallows my body. I haven't felt like this since my rebellious days in high school. Where every emotion I had was negative and hurtful and swallowed me whole. It makes me realize I don't know my place in life right now. It makes me feel like I am no use to anyone. It makes me feel alone. I drag my computer across my fuzzy minion blanket, open up Word and start typing.
Dear Family,
I no longer can be a part of you. I cannot feel my place in this once close clan. I am not understood. I am not accepted. I feel belittled. I feel worthless.
I see your stares as you watch me slow at work. I wince in pain as I bend down to grab papers my clumsy hand every so lovingly dropped. You do not help. You do not question. You only stare. You do not even feel sorry for me; you just look at me like I am nothing.
You are angered easily when I forget something, go to dinner with friends during the night and can't go to work the next day and when I say I don't feel well enough to perform a task. You are annoyed when I talk about my condition to someone in front of you. You avoid the subject when I try to give an update from a doctor's appointment.
You don't question my progress. You have no knowledge of my medication withdrawals, which gives me sweeping mood swings, alarming brain zaps, and nausea majority of the day. You don't know that my chest gets tight when you argue with me or when you look at me with a blank stare as I tell you I'm not feeling well. You don't feel the panic that flows through my body.
You don't realize I have an every day battle with getting out of bed. My body works against me as does gravity. It pulls me down until my bed swallows me whole. Depression is the same way. I stare around my apartment, feeling a foreign sense of where I am and an unknown sense of where I should be. I become angry knowing I'm late for work and you will instantly judge me; then I decide if I can face it or let my guilt and sadness eat away at my soul while rotting under the covers.
I'm down to my last resort of treatment options for pain, fatigue and my overwhelming feeling of being alone. Waiting for a phone call is like waiting for a police officer to write you a ticket. Going to doctor appointments is exhausting and emotional. Repeatedly telling my story and my symptoms is debilitating. Most of the time I am driven there; but I know that I am alone.
There are some things you should know about me. I have chronic pain and fatigue. I have TMJ, all three types of Thoracic Outlet Syndrome, Cervical Dystonia with a side of frozen muscles in my shoulder, above my collarbone and in my chest, Winged Scapula, Joint Hypermobility and possible Nerve Entrapment. It beats the living crap out of me every day. It throws me around like a ragdoll. It tries to take all my hope and optimism and faith. And I'm ok with it because I've been dealt my cards. What I'm not ok with is you treating me like I am nothing. Like there is nothing wrong with me. Like I'm lazy, unmotivated and weak. Pretending you can turn your head and it's all going to disappear with the drop of a hat. Because that is what's killing me faster than my medical history.
To me, acceptance and understanding is the most important part of living with a chronic condition. I don't have that. I've never once heard from you, "I'm sorry you are feeling like crap, is there anything I can do," or "Do you need help with anything," or even "I wish you didn't feel like this." I am going through it alone. You ignore my condition rather than talking it out and voicing your understanding; if you even have any.
You are selfish. You are introverted with what's going on between my body and I. You don't know how to talk about your feelings, and maybe it's just the way our family is. But someone with my condition needs help more than you realize. Acceptance. Empathy. Understanding. Even just a hug. Just knowing that you're there would make this a lot easier and tolerable.
I'm starting to think maybe it were easier if I weren't in the picture, or didn't live in the same city, or work at the same job as you. I wouldn't be such an inconvenience then. Tears well up and anger boils my blood when I wonder what would happen if I never developed TOS. What would our lives be like? Would it be different? Would you love me unconditionally and be there for other difficulties in my life?
My Thoracic Outlet Syndrome Warriors have been more of a family than you. My friends that aren't going through what I am show more empathy than you. My cats, my two lovely boys, show more compassion and understanding unspoken than you show in your words.
"I'm sorry for having this. I'm sorry for annoying you with my complaints. I'm sorry I can't be the perfect family member you envisioned." These are things I want to say to you, but it's all wrong. It sickens me with the thought of having to say that to you and lie through my teeth.
I sincerely hope that you come around and realize what you're doing to me. Because I will die faster from a broken heart than a broken body. I love you. I want to be apart of this family. I want ever so much to make this all go away; but I can't, and you can no longer ignore it.
I doubt I will hand this to you, because I know what the outcome will be. You will get mad that I wrote it in the first place, argue reading it and after making me sob you will finally take it from my hands until it makes its way crushed under piles of paper on your desk or in the garbage, pathetic and abandoned.
Love,
Daughter,
Sister,
Driftwood.
Equanimity.
-Kelsey
Dear Family,
I no longer can be a part of you. I cannot feel my place in this once close clan. I am not understood. I am not accepted. I feel belittled. I feel worthless.
I see your stares as you watch me slow at work. I wince in pain as I bend down to grab papers my clumsy hand every so lovingly dropped. You do not help. You do not question. You only stare. You do not even feel sorry for me; you just look at me like I am nothing.
You are angered easily when I forget something, go to dinner with friends during the night and can't go to work the next day and when I say I don't feel well enough to perform a task. You are annoyed when I talk about my condition to someone in front of you. You avoid the subject when I try to give an update from a doctor's appointment.
You don't question my progress. You have no knowledge of my medication withdrawals, which gives me sweeping mood swings, alarming brain zaps, and nausea majority of the day. You don't know that my chest gets tight when you argue with me or when you look at me with a blank stare as I tell you I'm not feeling well. You don't feel the panic that flows through my body.
You don't realize I have an every day battle with getting out of bed. My body works against me as does gravity. It pulls me down until my bed swallows me whole. Depression is the same way. I stare around my apartment, feeling a foreign sense of where I am and an unknown sense of where I should be. I become angry knowing I'm late for work and you will instantly judge me; then I decide if I can face it or let my guilt and sadness eat away at my soul while rotting under the covers.
I'm down to my last resort of treatment options for pain, fatigue and my overwhelming feeling of being alone. Waiting for a phone call is like waiting for a police officer to write you a ticket. Going to doctor appointments is exhausting and emotional. Repeatedly telling my story and my symptoms is debilitating. Most of the time I am driven there; but I know that I am alone.
There are some things you should know about me. I have chronic pain and fatigue. I have TMJ, all three types of Thoracic Outlet Syndrome, Cervical Dystonia with a side of frozen muscles in my shoulder, above my collarbone and in my chest, Winged Scapula, Joint Hypermobility and possible Nerve Entrapment. It beats the living crap out of me every day. It throws me around like a ragdoll. It tries to take all my hope and optimism and faith. And I'm ok with it because I've been dealt my cards. What I'm not ok with is you treating me like I am nothing. Like there is nothing wrong with me. Like I'm lazy, unmotivated and weak. Pretending you can turn your head and it's all going to disappear with the drop of a hat. Because that is what's killing me faster than my medical history.
To me, acceptance and understanding is the most important part of living with a chronic condition. I don't have that. I've never once heard from you, "I'm sorry you are feeling like crap, is there anything I can do," or "Do you need help with anything," or even "I wish you didn't feel like this." I am going through it alone. You ignore my condition rather than talking it out and voicing your understanding; if you even have any.
You are selfish. You are introverted with what's going on between my body and I. You don't know how to talk about your feelings, and maybe it's just the way our family is. But someone with my condition needs help more than you realize. Acceptance. Empathy. Understanding. Even just a hug. Just knowing that you're there would make this a lot easier and tolerable.
I'm starting to think maybe it were easier if I weren't in the picture, or didn't live in the same city, or work at the same job as you. I wouldn't be such an inconvenience then. Tears well up and anger boils my blood when I wonder what would happen if I never developed TOS. What would our lives be like? Would it be different? Would you love me unconditionally and be there for other difficulties in my life?
My Thoracic Outlet Syndrome Warriors have been more of a family than you. My friends that aren't going through what I am show more empathy than you. My cats, my two lovely boys, show more compassion and understanding unspoken than you show in your words.
"I'm sorry for having this. I'm sorry for annoying you with my complaints. I'm sorry I can't be the perfect family member you envisioned." These are things I want to say to you, but it's all wrong. It sickens me with the thought of having to say that to you and lie through my teeth.
I sincerely hope that you come around and realize what you're doing to me. Because I will die faster from a broken heart than a broken body. I love you. I want to be apart of this family. I want ever so much to make this all go away; but I can't, and you can no longer ignore it.
I doubt I will hand this to you, because I know what the outcome will be. You will get mad that I wrote it in the first place, argue reading it and after making me sob you will finally take it from my hands until it makes its way crushed under piles of paper on your desk or in the garbage, pathetic and abandoned.
Love,
Daughter,
Sister,
Driftwood.
Equanimity.
-Kelsey
Monday, January 26, 2015
Confessions of a TOSer.
Here are some of my confessions while living with Thoracic Outlet Syndrome. Some are funny, some are incredibly sad. Enjoy.
1. I've left my 'done' wash in the dryer for a record of 5 weeks.
I have an ample amount of clothing. Ask any of my friends; I'm the closet for all. My prized possessions are my 40+ sweatshirts, 20+ pairs of jeans and 15 pairs of sweatpants. I have enough of every category to last through a zombie apocalypse. In order to get to my washer and dryer, I have to go through my door, down the stairs, open two more doors, walk down a few stairs, plow into the stuck outside door leading into the basement, a few more stairs and then open and slam the door with a loose clasp all the while trying not to drop anything or slip on my ass. It truly is exhausting.
2. If I wake up in sweatpants, I usually wear them the rest of the day if I don't go to work.
Sometimes I ponder all of my wonderful sweatpants. Sometimes I picture myself lighting them on fire, hoping it will give the determination and energy I once used to carry. But then I laugh hysterically knowing that it's not the pants, it's my body that I'm at a war with.
3. I would rather stay at home with my cats than go socialize with humans that silently judge me.
I'll admit it. I love my cats. They are a pain in the behind most days, but they get me out of bed. And if I can't get out of bed, they are right by my side. When I'm in my worst pain crying in bed unable to move, Dimitri is right by my side, eyes wide, making sure I'm comforted. If I'm hunched over the toilet from medication withdrawals, Ellington and Dimitri both are there. I've said this previously; through this journey, I've lost a lot of important people in my life but I have also gained very close and trustworthy friends. Nonetheless, socializing with animals that can't judge me sometimes puts me at ease.
4. I watch mostly old television shows and fantasy movies because sometimes realistic film hits too hard for me.
The Avengers, Gunsmoke, Bonanza, Bugs Bunny, Pan's Labyrinth, Hell Boy, Inception and Cloudy with a Chance of Meatballs are some of my favorites. It takes me away from reality temporarily. It brings me to a world without pain. It soothes my mind and makes me forget for a moment that my body is silently trying to kill me.
5. I. Hate. Dishes.
Something I used to enjoy, while jamming out to Paramore and dancing around my kitchen, I now loathe. Occasionally my hand goes through weak spells or tremors and I usually drop dishes if I'm not careful. On top of that, I usually wait until my sink is completely full before I do them. So looking down for more that 30 minutes starts to give me burning pain in the back of my head. Sigh.
6. Music is my favorite therapy.
Whether it's concerts, a night out in Elkhart Lake for live music or violins echoing in my bathroom while soaking in essential oils, it cures my mind and mends my soul slowly and wonderfully. Recently I have been stuck on Twenty-One Pilots, Lewis Watson and the Ray Charles Pandora station. I secretly wish the world had music in the background of every moment like in the movies.
7. Sometimes I think I'll never get married.
Wait, I'm 23 years old.... And I've already given up? People question this all the time, especially my mother. I don't think anyone without a chronic condition understands it, no matter how hard I try to explain it. Men that I've dated in the past have seen me as weak, like a wounded fawn in the dead cold of winter. I've been slammed with pity, shame, embarrassment and loss. I've been given up on, left for dead because I am not able to be handled. I don't need someone to take care of me, I just want someone shows empathy. I keep putting off dating until I am 'healed' but in all honesty, that may never happen. And I have always felt this will go away like the flu; but it is now a part of me. As corny as the Marilyn Monroe quote is, I truly don't want someone to have me at my best if they can't handle me at my worst.
8. I've started to find out who I am, and I am genuinely starting to love myself inside and out.
I've found parts of myself that I never knew existed. One is my mental strength. I've broken down many times in the past few years, feeling completely useless and weak. But I finally realized, I've gotten back up every single time. No matter how many times I've said, "I want to give up" I never have. I've also started to let down my guard and be my weird self. Usually I'm coy and shy, unaware if new people will accept me or reject me. Same when my TOS started. Because it is an invisible illness, people automatically assume you aren't as sick or as hurt as someone with a visible illness. Truth is, it's almost worse. And I always felt silly or stupid for covering it up and pretending it's not there. But recently my attitude has been: This is me....Accept me or not and I will do the same.
9. I cherish the little things the most.
As I've said, I recount the people I've lost in my life to TOS, and the number is relatively shocking. I think of all the hurt I've endured from people that thought I was crazy, or a cry baby, or even worse: faking it. I've had to scrape myself up from the bottom of the ocean, cheek-stained tears and weak heart, just to have it keep happening. So when I get a heart-warming text message when I wake up or someone from my past reaches out to me, I am more than over-joyed. When someone I haven't talked to in awhile asks me if I need help, I am grateful. I was freezing at work while on night shift by myself, I forgot all of my warm clothes and didn't have any dinner. My friend dropped off hot chocolate, extra layers and dinner. I think about it now and a huge smile comes across my face. That's what I think about when pain swirls through my entire body, slowly trying to capture my soul. It's what keeps me sane.
10. The people that have helped me the most are constantly on my mind.
I have gained some of the best friends through this experience. Friends that ask how I'm feeling and truly care about my answer. Friends that want me to get better, not because they are sick of hearing about it, but because they want me to be healthy and happy. Friends that have left an amazing impact on my heart. Those people remain on my mind through most of the day. There are days I feel guilty because they have helped me so much and sometimes I can't return the favor. And there are days where I feel humble from their generosity. I fear negative situations will arise for them, but hope that they don't. It's a burden and a blessing.
11. Back to the dishes confession, I'm pretty used to frozen food.
One of my passions is cooking. Salmon with rice and charred asparagus. Steak with pepper jack mashed potatoes and green bean casserole. Homemade 3 cheese spaghetti with wine-sauteed veggies. I constantly look for new recipes. However, cooking takes a lot out of me. Grocery shopping, carrying the bags in to my apartment, prepping the food, making the food, putting the leftovers away, cleaning up the kitchen and wash the dishes. Thinking about that almost puts me in a sleepy state. So now I've resorted to corn dogs, edamame, ice cream and the occasional applesauce and cereal. My mom is kind enough to make dinner bowls of her home cooking for me too. I am definitely not complaining; I am incredibly thankful I can eat without pain, as I know others aren't as fortunate.
12. Coffee has no effect on me anymore.
I don't know why I go through the motions of making coffee in the morning. I'm a one-cup-lady so I have a Keurig. I make dark roast coffee. The only effect it has on me is the shakes. There are times where I've woken up, sipped my delicious brew while watching the news, and passed back out within 5 minutes. It's not that my body is caffeine intolerant. It's literally just that it doesn't give a shit anymore. It's so tired that it wouldn't care if I put 10 cups of coffee in it. It would just respond with, "Cool, now where's my bed at."
13. I lay down in public places all the time.
Sometimes my body is exhausted. Sometimes my body says no, and just needs to rest. I used to never give in to it. But after reading "How to be Sick" by Toni Bernhard, that all changed. Toni taught me that I need to listen to my body rather than ignoring it or pushing it off until later. I've given in and have rested on restaurant booths, a row of office chairs, my aunts' living room, the backseat of my brothers' car on a longer drive and even the gross airport floor. Some people look at me like I'm weird or automatically assume I'm a young lazy 'kid' or hungover. But the truth is, I'm just exhausted. And I don't really give a crap why people are staring at me or what my friends and family think. If my body says it's time to rest, I rest.
14. I feel bad for my body.
My mind and heart are on the same page. They communicate correctly, correlate decisions, and truly care about my well being. The rest of my body is in a completely different book. I silently think to myself, "Please, body; calm down. Relax yourself. You work so hard and keep me living. Now rest up to be pain-free." When I toss and turn at night from leg cramps, crying out, "No, no! Please stop," I silently try to convince my body to stop destroying me. I silently wish it wouldn't keep trying to destroy itself and hope it gives in to treatment and rest.
15. After months of ignorance after surgery, I've finally have come to the realization that I may be living with this for the rest of my life.
This runs through my mind often. I picture my future. A different job. A different city. Marriage (Only if a man can accept my cats.) A house full of Pinterest design projects I hope to one day have completed. Vacationing in Europe. Children. A Leonberger or German Shepard or Lab. When I picture it, I envision both sides of the spectrum: With and without Thoracic Outlet Syndrome and Fatigue. I need to be realistic about my future and can't keep living in a fairy tale thinking that everything is going to be perfect. Because let's be honest, we all know nothing in life is perfect.
Equanimity.
-Kelsey
1. I've left my 'done' wash in the dryer for a record of 5 weeks.
I have an ample amount of clothing. Ask any of my friends; I'm the closet for all. My prized possessions are my 40+ sweatshirts, 20+ pairs of jeans and 15 pairs of sweatpants. I have enough of every category to last through a zombie apocalypse. In order to get to my washer and dryer, I have to go through my door, down the stairs, open two more doors, walk down a few stairs, plow into the stuck outside door leading into the basement, a few more stairs and then open and slam the door with a loose clasp all the while trying not to drop anything or slip on my ass. It truly is exhausting.
2. If I wake up in sweatpants, I usually wear them the rest of the day if I don't go to work.
Sometimes I ponder all of my wonderful sweatpants. Sometimes I picture myself lighting them on fire, hoping it will give the determination and energy I once used to carry. But then I laugh hysterically knowing that it's not the pants, it's my body that I'm at a war with.
3. I would rather stay at home with my cats than go socialize with humans that silently judge me.
I'll admit it. I love my cats. They are a pain in the behind most days, but they get me out of bed. And if I can't get out of bed, they are right by my side. When I'm in my worst pain crying in bed unable to move, Dimitri is right by my side, eyes wide, making sure I'm comforted. If I'm hunched over the toilet from medication withdrawals, Ellington and Dimitri both are there. I've said this previously; through this journey, I've lost a lot of important people in my life but I have also gained very close and trustworthy friends. Nonetheless, socializing with animals that can't judge me sometimes puts me at ease.
4. I watch mostly old television shows and fantasy movies because sometimes realistic film hits too hard for me.
The Avengers, Gunsmoke, Bonanza, Bugs Bunny, Pan's Labyrinth, Hell Boy, Inception and Cloudy with a Chance of Meatballs are some of my favorites. It takes me away from reality temporarily. It brings me to a world without pain. It soothes my mind and makes me forget for a moment that my body is silently trying to kill me.
5. I. Hate. Dishes.
Something I used to enjoy, while jamming out to Paramore and dancing around my kitchen, I now loathe. Occasionally my hand goes through weak spells or tremors and I usually drop dishes if I'm not careful. On top of that, I usually wait until my sink is completely full before I do them. So looking down for more that 30 minutes starts to give me burning pain in the back of my head. Sigh.
6. Music is my favorite therapy.
Whether it's concerts, a night out in Elkhart Lake for live music or violins echoing in my bathroom while soaking in essential oils, it cures my mind and mends my soul slowly and wonderfully. Recently I have been stuck on Twenty-One Pilots, Lewis Watson and the Ray Charles Pandora station. I secretly wish the world had music in the background of every moment like in the movies.
7. Sometimes I think I'll never get married.
Wait, I'm 23 years old.... And I've already given up? People question this all the time, especially my mother. I don't think anyone without a chronic condition understands it, no matter how hard I try to explain it. Men that I've dated in the past have seen me as weak, like a wounded fawn in the dead cold of winter. I've been slammed with pity, shame, embarrassment and loss. I've been given up on, left for dead because I am not able to be handled. I don't need someone to take care of me, I just want someone shows empathy. I keep putting off dating until I am 'healed' but in all honesty, that may never happen. And I have always felt this will go away like the flu; but it is now a part of me. As corny as the Marilyn Monroe quote is, I truly don't want someone to have me at my best if they can't handle me at my worst.
8. I've started to find out who I am, and I am genuinely starting to love myself inside and out.
I've found parts of myself that I never knew existed. One is my mental strength. I've broken down many times in the past few years, feeling completely useless and weak. But I finally realized, I've gotten back up every single time. No matter how many times I've said, "I want to give up" I never have. I've also started to let down my guard and be my weird self. Usually I'm coy and shy, unaware if new people will accept me or reject me. Same when my TOS started. Because it is an invisible illness, people automatically assume you aren't as sick or as hurt as someone with a visible illness. Truth is, it's almost worse. And I always felt silly or stupid for covering it up and pretending it's not there. But recently my attitude has been: This is me....Accept me or not and I will do the same.
9. I cherish the little things the most.
As I've said, I recount the people I've lost in my life to TOS, and the number is relatively shocking. I think of all the hurt I've endured from people that thought I was crazy, or a cry baby, or even worse: faking it. I've had to scrape myself up from the bottom of the ocean, cheek-stained tears and weak heart, just to have it keep happening. So when I get a heart-warming text message when I wake up or someone from my past reaches out to me, I am more than over-joyed. When someone I haven't talked to in awhile asks me if I need help, I am grateful. I was freezing at work while on night shift by myself, I forgot all of my warm clothes and didn't have any dinner. My friend dropped off hot chocolate, extra layers and dinner. I think about it now and a huge smile comes across my face. That's what I think about when pain swirls through my entire body, slowly trying to capture my soul. It's what keeps me sane.
10. The people that have helped me the most are constantly on my mind.
I have gained some of the best friends through this experience. Friends that ask how I'm feeling and truly care about my answer. Friends that want me to get better, not because they are sick of hearing about it, but because they want me to be healthy and happy. Friends that have left an amazing impact on my heart. Those people remain on my mind through most of the day. There are days I feel guilty because they have helped me so much and sometimes I can't return the favor. And there are days where I feel humble from their generosity. I fear negative situations will arise for them, but hope that they don't. It's a burden and a blessing.
11. Back to the dishes confession, I'm pretty used to frozen food.
One of my passions is cooking. Salmon with rice and charred asparagus. Steak with pepper jack mashed potatoes and green bean casserole. Homemade 3 cheese spaghetti with wine-sauteed veggies. I constantly look for new recipes. However, cooking takes a lot out of me. Grocery shopping, carrying the bags in to my apartment, prepping the food, making the food, putting the leftovers away, cleaning up the kitchen and wash the dishes. Thinking about that almost puts me in a sleepy state. So now I've resorted to corn dogs, edamame, ice cream and the occasional applesauce and cereal. My mom is kind enough to make dinner bowls of her home cooking for me too. I am definitely not complaining; I am incredibly thankful I can eat without pain, as I know others aren't as fortunate.
12. Coffee has no effect on me anymore.
I don't know why I go through the motions of making coffee in the morning. I'm a one-cup-lady so I have a Keurig. I make dark roast coffee. The only effect it has on me is the shakes. There are times where I've woken up, sipped my delicious brew while watching the news, and passed back out within 5 minutes. It's not that my body is caffeine intolerant. It's literally just that it doesn't give a shit anymore. It's so tired that it wouldn't care if I put 10 cups of coffee in it. It would just respond with, "Cool, now where's my bed at."
13. I lay down in public places all the time.
Sometimes my body is exhausted. Sometimes my body says no, and just needs to rest. I used to never give in to it. But after reading "How to be Sick" by Toni Bernhard, that all changed. Toni taught me that I need to listen to my body rather than ignoring it or pushing it off until later. I've given in and have rested on restaurant booths, a row of office chairs, my aunts' living room, the backseat of my brothers' car on a longer drive and even the gross airport floor. Some people look at me like I'm weird or automatically assume I'm a young lazy 'kid' or hungover. But the truth is, I'm just exhausted. And I don't really give a crap why people are staring at me or what my friends and family think. If my body says it's time to rest, I rest.
14. I feel bad for my body.
My mind and heart are on the same page. They communicate correctly, correlate decisions, and truly care about my well being. The rest of my body is in a completely different book. I silently think to myself, "Please, body; calm down. Relax yourself. You work so hard and keep me living. Now rest up to be pain-free." When I toss and turn at night from leg cramps, crying out, "No, no! Please stop," I silently try to convince my body to stop destroying me. I silently wish it wouldn't keep trying to destroy itself and hope it gives in to treatment and rest.
15. After months of ignorance after surgery, I've finally have come to the realization that I may be living with this for the rest of my life.
This runs through my mind often. I picture my future. A different job. A different city. Marriage (Only if a man can accept my cats.) A house full of Pinterest design projects I hope to one day have completed. Vacationing in Europe. Children. A Leonberger or German Shepard or Lab. When I picture it, I envision both sides of the spectrum: With and without Thoracic Outlet Syndrome and Fatigue. I need to be realistic about my future and can't keep living in a fairy tale thinking that everything is going to be perfect. Because let's be honest, we all know nothing in life is perfect.
Equanimity.
-Kelsey
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