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 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.

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.   

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.  

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