Strength

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

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

Day & Night

Day

Drifting through a luscious night of sleep, I hear the ting ting ting of my alarm in the distance.  Opening my eyes, I reach for the alarm clock, throw a sweatshirt on and start making my coffee.  Dimitri and Ellington beg for food as I connect Pandora Radio Station to my sound bar.  The heavenly aroma of Italian Roast swirls into my nostrils.  My apartment is clean, but I must make it better.  After I eat my bowl of cereal, I work on my dishes, sweep the kitchen floor, organize laundry and dust.  A light breeze dances through my apartment as I finish my chores and get ready for work.  I make a mental note to scrub the bathroom sink and vacuum when I return.  After giving the cats a big hug and kiss, I turn my key to my door and I'm off to enter the world. Organized.  Energized.  Efficient.  Optimistic. Happy.

Night

I've slammed my alarm 3 times, still not able to fully open my eyes.  A heavy fog has sunk into my brain as I yawn my way to the kitchen, tripping over two extremely hungry cats.  Angry, I prolong feeding them out of annoyance.  I attempt to start my dishes but the throbbing pain in my collarbone stops me in my tracks.  I consider pain killers, aleve, ibuproferen, heat or ice, bio-freeze or essential oils.  Something to suck out the hell that has sanctioned itself within the depths of my brachial plexus.  I decide on an ice pack and my deep relief oil.  Staring at the TV and sipping my coffee, I think of my to-do list for the day.  I look around my apartment; cat hair on the coffee table, mounds of unsorted clothes in my bedroom, dishes piled up.  It's not so bad, I guess.  Could be worse.  Nearing the bottom of my coffee, I have a choice.  I look to the right into my kitchen, picturing myself putting shoes on and heading to work knowing very well it will bring non-empathetic stares and annoyed feelings of laziness.  I look straight ahead to my bedroom where comfort, depression, guilt and irritation awaits.  Neither are good choices.  Neither will make me happy.  Can I face it?  Can I face the world today?  Can I overcome the stares and judgement and brain fog and pain?  Slipping under the sheets,  I can't help but feel overwhelmed.  Pain.  Anger.  Frustration.  Guilt.  Fog.

This process is what I like to call Day & Night.  I'm sure I'm not alone when I say I have it often and if I don't, I think about it.  It's the thought process between a good day (Day) and a bad day (Night).  I noticed the difference after I received botox injections.  I was in pain, exhausted and my apartment was a mess.  But no matter how messy it got, I've always accepted it as It's not that bad.  After dealing with chronic pain, I had to realize the fact that I will never be able to fully accomplish all my tasks in a single day.  Once the botox started kicking in and a few good days frequented, I went nuts if my sink was full, if my coffee table was dusty or if my pets weren't fed.  I became a control freak once again.  Everything needed to be tediously placed and put away.  I'd ween off my pain medications and start to feel good again; but there's never an ending to chronic pain.

The botox would wear off and I would be left with exhaustion from pain, stress and work.  The chores would to pile up as did the mail on my dining room table.  Checklists had to be made to keep my mind in check for the tasks at hand.  My mind was foggy and simple things started to slip through the cracks.  I would start to feel belittled and useless.  Days and days of laying in bed fighting fatigue and sadness and anxiety would add up even more pressure.  The constant nagging thought of what my family thinks of me hangs low over my head.  The cycle would never end.


On top of everything else in my life, why do I have to go through this too?  Why do I have to have chronic pain, and be tickled with the thought of amazing days when I have the most horrendous days along with them?  I sat in bed this morning, with Dimitri and Ellington at my sides, but I couldn't lay still.  I kept kicking my legs and clenching my fists.  My mind wouldn't stop teasing my anxiety.  I felt so fatigued and drained and depressed that I didn't want to go to work.  I couldn't decide what to clean in my more-than-cluttered apartment.  I turned the TV on and couldn't even decide what to watch.  Then I repeatedly became angry with myself for my choices of the day.  If I would have went to work like I did yesterday, I would have snapped or felt more pain and then I would be two days down on energy.  On the other hand, the good days I feel way too good and wear myself out from doing too much.  Then I think I'm crazy for thinking I have bad days at all.  What gives?

The reason why I decided to finally share this is to ask for help.  Not just for me, but others feeling this way too.  How do you get out of it?  How do you overcome the sickening feeling of not wanting to be in that exact moment but unable to unfreeze yourself?  How are you able to be content and coast through every day, whether good or bad?  Please comment and share some advice on this subject.  And know, that you are never alone.



Equanimity,

Kelsey

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