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 

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 

Ever heard of Botox Injections... Not for your face?

The last time I woke up before 5:30 a.m. was in October, before my flight to California; and even then I was more crabby than Paris Hilton's drawers.  I threw my phone upon hearing my alarm, accidentally kicked my cats at the end of my bed and nailed my foot on my desk chair.  It was safe to say I have no coordination when I'm zombie-tired.

Today I traveled an hour and twenty minutes to Froedtert Medical College Campus in Milwaukee, Wisconsin for a doctor appointment with a physical medicine and rehabilitation physician.  My appointment was at 8:00 a.m. and my dad picked me up at 6:30.  Knowing we were driving through Milwaukee at one of the worst times during the day, I was relatively stressed about being late.  The coffee in my stomach was already providing me with enough jitters but the anxiety enhanced them.  Instantly I started feeling the brunt of my symptoms swell over my body.  Bumpy roads and no pillow made for an angry body.

We hit stand still traffic at 7:30 and I started panicking.  I couldn't call the clinic to let them know we might be late because they don't answer the phones until 8:00 a.m.  I found this to be hilarious.  Once off the highway, winding through the streets of Milwaukee, we finally arrived at Froedtert.  People curiously stared as we were fast-walking through the halls while following directions on a printout.  Relief settled in my bones as we made it to registration at 8:02.  My name was called almost immediately. Like all doctor appointments, I was skeptical to walk in, but I needed to keep my shit together.  I had a long appointment ahead of me.

I settled into room number 2 as the nurse took my blood pressure and made small talk.  No matter how stressed I get, my blood pressure remains impeccable at 112/80.  I noticed the pre-millennium hospital bed across from me and chuckled to myself.  The first doctor was a resident to the main doctor I was going to see.  He asked all the intricate detail questions so he can put them on file.  Healthy people will never know how exhausting it is having to re-tell a story over and over and over again to every doctor.  Every time it makes me tear up.  Every time it makes me feel weak.  Every time it makes me feel like I am the only person going through with it and that I am foreign to all other human beings.  My neck started shooting lightning bolts into my head while looking at him on an angle so I re-positioned myself slanted in the chair facing the doctor.  It probably looked incredibly silly.  He checked my reflexes and told me Dr. Ketchum should be in shortly.

Now the reason for this visit is because I have exhausted all of my other options post-surgery.  Medications, physical therapy, chiropractor, rest, massage therapy, trigger point injections and cortisone injections.  All my appointments through the last 6 months ran through my mind as tears started to form.  I mean I've been super emotional because of withdrawals from duloxetine (a medication being used for neurological pain) but come on!  I kept telling myself to keep it together, and like Chuck Norris would do, I scared those tears right back into my eye lids.

Once Doctor Ketchum did an examination, he concluded that I have dystonia in some of my muscles around my neck, collarbone, shoulder and head that have developed since surgery.  He explained it as having muscles that don't know how to 'turn off.'  And since I was having symptoms for years without a diagnosis, they had plenty of time to get comfortable being pains in the ass.  Groups of muscles can cramp around the veins, arteries and nerves, which could be why I'm in so much pain.  He suggested we try Botox Injections, every 3 months for 9 months to find relief. If my pain levels drop I will be able to start physical therapy to strengthen my muscles.  Doctor Ketchum wants to try pin-pointing areas in the back of my head for migraine relief while targeting others in my neck and shoulder area.  There are a few risks, especially injection in this area, that include difficulty swallowing, speaking or muscle weakness.  He reassured me that they are rare to happen and if they do, the injections wear off eventually.

Here is the hard part.  Like all other doctor appointments, I like to be prepared in case if treatment doesn't work.  It's not that I try to set myself up for failure; trust me, I'm a very optimistic person.  I like to be prepared rather than let in the dark and make a last minute decision.  We discussed if that were to happen and made a plan.  Finding little to no relief from these injections could indicate nerve entrapment and I would have to get another EMG.  However, I'm hoping that this does the trick.

I am also starting an experiment with CBD Tincture Oil.  Referred from a friend, I did a little research and found that it can be beneficial for patients with fibromyalgia, chronic pain and many other medical issues.  I purchased a bottle of 100 mg vanilla flavored oil.  Each serving is 1 mg and the dose can be adjusted depending on how much you need.  For those of you that want a little more information, here are a few articles I found to be helpful:

Buying Guide
Story that will put a tear to your eye
Article
Benefits






I will be updating my progress from the Botox Injections and Oil upon receiving them.  Cross your fingers.

Equanimity,

-Kelsey