Finding Hope Amidst Chaos

NEW! People You Should Know Podcast: had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen to.

June 2016
When every which way you look feels like there is something bad happening, how do you stay hopeful? Where does the strength come from when oftentimes all you want to do is just give up? At this point in the year, every direction I looked felt like something bad was happening even though I knew a tremendous amount of progress had been made and I had come far.  

When the shaking in my leg started on June 2nd due to either swelling or a stretch on my spinal cord after my neurosurgeon readjusted my halo to realign my skull-C2, I was sad, scared, frustrated, and just overwhelmed. The shaking in the leg has happened several times before so I knew it would eventually stop on its own but that doesn't mean it makes it any easier to deal with. I wasn't prepared for the shaking to come back after I had the C3-T2 fusion. The shaking this time lasted about 10 days. 

June 5th...day 3 of my R leg shaking. This is my niece fixing my hair for me. She is becoming a "halo hairstylist" too!

Despite the fact that my leg was still shaking, on June 6th, my mom and I decided to bring my nieces to the lake by our house to have a picnic. As long I lock my knee, and deactivate my quads (muscles on top of thigh) then I can walk around in my own way so that's what I did. Once we found a picnic table, and sat down to begin eating our food, we were visited by some geese and their babies. They were incredibly close to us! 

Baby geese with their parents and below are my nieces. The pictures of the geese were taken with just the camera on my phone and I didn't zoom in on them.  

June 7th: one of the risks that come with having a halo brace is one of the pins becoming infected. To those that are new to a halo brace, if any of your pins are bothering you, get in touch with your doctor right away to have them checked out. I knew the one pin above my left ear had become infected because it was red, smelled, and there was a yellow pus. I ended up getting a prescription for a topical antibiotic ointment. If the infection didn't clear then I would need that pin replaced...fortunately it healed up. To try to decrease the chances of infection returning, we cut a chunk of my hair away from the pin. 
Pic below of infected pin. If you're squeamish just scroll past

Hair that we cut on the left and infected pin on the right...fun times. 

June 8th-June 14th
The shaky leg was still shaking. To distract my mind, I usually turn to arts/crafts. My dad built some birdhouses so my nieces and I decorated them. In between birdhouse decorating, I would go lay down which means my sidekick Daisy (my dog) would follow and make herself comfortable too. The birdhouses are now hanging on the fence in our backyard and are the homes to some very happy birds. 

They were serious working on their birdhouses

She doesn't look comfortable, right? 

June 16th at this point the shaking in my R leg had stopped. It had stopped around the 12th of June. June 16th though was the first time I had attempted to put some makeup on while in the halo. I was just having one of those days where you could tell I wasn't feeling good so I was trying to "hide" it. 

It was hard to get the makeup on...which I barely put any on. The bars were in the way and I couldn't manipulate my arms to get around them. The bottom right picture is just me being weird. 

June 19th aka FATHER'S DAY!
I have always said it, but it's true; I am blessed to have an amazingly supportive family. They all go out of their way to help me, and each person plays their own roll. My dad helps me SO much!! He financially supports me and pays for all the travel expenses that add up so I can receive the care that I need. He's a quiet individual (like me) and doesn't look for attention. He's more the guy behind the scenes but deserves so much. He is the hardest worker that I know. 
On Father's Day we brought my grandpa back to our house and we had a lovely picnic in our backyard. He recently just turned 94 years young and is a die hard Chicago Cubs fan. I would LOVE nothing more than for the Chicago Cubs to win the World Series at least once in his lifetime. 

I got my dad a shirt that says, "Proud DAD of a freaking awesome daughter who loves the Blackhawks (and yes, she bought me this shirt). This is probably one of my favorite pictures, and I am still SO happy my Blackhawks onesie fits me.

Only ones not pictured are my brother, sister-in-law, and nephews because they live out of state. All the people pictured above, plus those not in the picture are the most amazing family. 

Now, to go back to the way I started this post, how do you stay hopeful when it feels like every which way you look something bad is happening? This is how I do it: 

Over the years, with dealing with all of the medical issues I have learned you have to appreciate the little things in life & you don't take anything for granted. There's not a day that goes by since seeing Dr. F that I am beyond thankful that I am not paralyzed shoulders down, and that I am alive. In all honesty, something should have happened to me. Dr. F showed the video imaging to his colleagues and brought it to his conferences; all were in amazement that I was still walking around with as bad as my neck was. Why something more serious didn't happen to me...I don't know. It's a question that I ponder a lot when I see/hear of other people who suffer from the same issues I did/do. You can compare it to survivors guilt if you want. 

My perspective has a lot to do with it. I look around and realize that I have a lot going for me despite the ongoing medical issues. Sometimes perspective is changed when you hear of other peoples' circumstances. Sadly there are far too many people out there who don't have access to the medical care they need. Over the past few weeks, I have learned that there are NOT many knowledgeable doctors who deal with Craniocervical Instability (CCI and its instability from skull-C2) or neck instability; especially in patients with Ehlers-Danlos Syndrome (EDS) When I felt my skull slide forward after the brace fitting, and I was having difficulty walking, I didn't have to worry about searching for a doctor to help me because I already had one. There are so many people right now as we speak, who are fundraising to get the money to travel to other countries like the United States or Barcelona to get their CCI addressed. It shouldn't be. CCI is a life-threatening condition. My heart goes out to those that I have corresponded with who are suffering so much from it. To those that aren't familiar with CCI, here's a link with more info on Craniocervical Instability. I sent this to my physical therapists last year and we all thought I had it. 
What is Craniocervical Instability-The Pain Relief Foundation


My FAMILY is my rock. Sadly, this is something that not everybody has (oftentimes in chronic medical conditions) which goes back to looking at life with a different perspective. If I didn't have my family I don't know what I would do. I would not be able to receive the medical care that I have been fortunate enough to receive. One of the emotions that I feel the most is guilt because so much of my medical care being is out of state. This means my issues end up separating my family because I can't drive and I need help with tasks every day. I love my family so much. 

Honestly, I think the only way you can ever be hopeful about your situation is when you acknowledge it. Acknowledge that it sucks, it's not ideal, and it's hard. I think it's important to acknowledge the issue because it's the first part of acceptance. When you fully accept your issue, you can prep yourself mentally to fight for whatever battle you're about to endure. Nowhere does it say that you have to be positive 100% of the time. Personally, I don't buy being positive all the time because it doesn't negate the fact that there is still not so good stuff happening. As long as you don't stay in a bad state of mind all of the time, then I think it's okay to have bad days; it's what makes us human. As Dr. Seuss would say, "When you're in a slump, you're not in for much fun. Un-slumping yourself is not easily done."

Reaching out to people is kind of at the top of my list for finding hope. I tell myself I've had to deal with some of this really rare medical stuff so I can share my story to help others. There have been so many people that have reached out to me, and that gives me a push to keep moving forward. At the end of the day, I have to HOPE that things will get better. There's a reason I have 'HOPE' on the front of my halo; it's a daily reminder every time I look in the mirror that there is hope that I WILL get better no matter how hard it is to get there. 

To all my EDS Zebra Strong Warriors, I wish there was something more that I could do for you; especially those who are in really bad shape due to CCI overseas who are having trouble finding care. Keep fighting, and hopefully you'll get your surgeries soon which will lead to a better quality of life for you. 

Please SHARE this post. There needs to be more awareness about Ehlers-Danlos Syndrome, as well Craniocervical Instability. The only way that happens, is by sharing things things to spread the word. You never know what a difference it could make!!!

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As always, if you wish to communicate you can email me at kingmeg19@gmail.com To those that are shy to email me, I can tell you now, you are not the first!
 

Final 5 Days Leading to Surgery

April 7, 2016
It was the beginning of the second day of my life with the halo. I was discharged from the hospital on the second day as well. They were going to send me home on April 6th but because I had an early morning appointment the very next day, my doctor decided to just keep me the extra night because it made it a lot easier on me not having to endure the car ride. For those who aren't familiar, Chicago has VERY bumpy roads. 

First car ride home in the halo. It was also the
first car ride where I did not feel like a
bobble-head toy. It was the most pain free
car ride in quite a while. 

When we got home, I was so excited to see my baby...my dog Daisy. As excited as I was, I was also a little apprehensive. I had read a story of a person who was in a halo whose dog barked at them because they were scared of the halo. Fortunately this did not happen to me at all. Daisy was one big bundle of love like she always is. 

Picture says it all. Daisy had no problem seeing me in the halo. She tried crawling all 60 lbs. of her into my lap. 

April 8, 2016
Now that I was home, I was in panic mode. It felt like I had a ton of things to do in preparation for surgery in just 4 short days. The strange thing is, I didn't really have a ton to get done. Unlike the past several surgeries, this surgery was actually in the same state that I live in. The preparations I had to do were learning basic things like brushing your teeth. This involves having two cups. One cup filled with water and a straw, and the other cup empty. You rinse your mouth with the straw cup, and spit into the the empty one. Another thing I had to learn was being aware of my surroundings. You don't realize how big this thing on your head actually is until you start banging into walls, scratching refrigerators (literally), and hitting car doors.

That horizontal line that you see...yep, from the halo...oops

I will say, you learn pretty fast about your surroundings because it hurts every time you hit your head. The biggest preparation I had was getting clothes that would fit me because I owned nothing that would fit over my halo. It was hard trying to get all of this stuff done because my skull hurt from where the pins were inserted, and at the same time my brain was hurting from the stress of a big fusion coming up. It felt like things were moving in the blink of an eye and I had no way to slow it down. I was panicking. Since 2007 it had been nothing but shoulder/scapular surgeries, and now all of sudden I needed surgery on my neck. Necks were unfamiliar territory.

April 9, 2016
The first thing I wanted to get in order was clothing. After all, I would say it's pretty important to have some clothes to wear. Wouldn't you? They say going shopping helps decrease stress too, right? So that's what I did. My goodness...WRONG! I never thought clothes shopping was going to involve so much thought and drive me nuts. It was aggravating. My clothes had to be big enough to fit over my vest, and big enough to fit under my vest. Not only did I need the shirts to be big enough, but I needed the shirts to be stretchy enough because I needed to be able to pull the shirts on like a skirt since I can't get my arms up over my head. Stepping into the shirts like a skirt has been working out really well for me. Fortunately for me, I had some clothes given to me from a friend a few days before the halo installation so I had some stuff to get me by until I could really see what would work once the halo was on. 

(Pins have been cleaned every single day since halo application)
Now, you might be wondering about pin care. They teach you this before you're discharged from the hospital. IT IS VERY IMPORTANT TO WASH YOUR PINS TO PREVENT INFECTION! My mom washes my pins twice daily; once in the morning and once before bed. I have two pin sites on my forehead, and one above each ear. To clean my pins, I was told to use diluted hydrogen peroxide, and bacitracin ointment. Some doctors may advice otherwise so do what your doctor tells you to do. I am not giving out medical advice.

This is what the pins that are screwed into my skull look like. The entire screw doesn't go into the skull. It goes in a few millimeters. You have to be careful hugging people with this halo on. You learn quickly you can't hug like you used to.

This is a side view of how the halo portion is attached to my head
and a front view. You can see the two pin sites on my forehead.

This is what the halo and vest looks like from the back and what
the other side of my head looks like. 

This is our setup of materials. Scissors to cut the Gauze pads, bacitracin ointment, long Q-tips so our fingers aren't near the pins, hydrogen peroxide, and saline solution.

Mom's favorite time of day: Pin cleaning!!

April 10, 2016 First time showering with a halo. It was a flashback to my days of trying to figure out how to shower after my very first shoulder surgery. My guess would be the average person who is in a halo would say it is quite a challenge trying to shower with the halo on. For me though, it wasn't as hard as I had imagined it would be. I've been living in a very medical filled world for the past 10 years. I've had a ton of shoulder and scapular (shoulder blade) surgery; 19 of them to be exact, not to mention the surgeries on my hips, knee, and ankle. I'm sure learning how to shower after all of those surgeries in braces has something to deal with why I didn't think it was too bad showering with the halo. The transitioning phase from being perfectly healthy/normal was gone years ago so I had a comparison of what it was like showering in braces that were much harder. I guess you would say my perception is a bit off from the average person in a halo brace.

This is how I get my hair washed with the halo. My dad is a very handy guy and he likes to make things to solve problems. He made a platform of sorts for me to lay on so my head would hang over the bath tub and it would avoid me from having to put pressure on my arms. My mom or sister could then sit on the edge of the tub and wash my hair for me. I know it is possible to wash your hair by yourself but since my arms don't have that ability I have no clue how to explain that to you.

This was the platform my dad made and how it was intended to be used. The first time my mom and sister washed my hair, we put the platform half way in the tub. Ever since that time the platform has stayed out like this. 

It is VERY important that the sheep's wool lining of the vest DOES NOT get wet. Therefore, it is important to protect the vest. We cut a hole in a garbage bag and then wrapped towels around the vest. 

Putting a garbage bag over the vest

Towels surrounding the vest for extra protection
from water.

Hair getting washed. We use baby shampoo around the pin sites
because it is gentle. We do NOT use conditioner by the pin sites.
My mom or sister will use a little regular shampoo/conditioner at
the bottom of my hair to make it easier to brush out so it's not
like a bird's nest. 

Memory making with my sister :) 

April 11, 2016
Day before surgery. I did a lot of thinking that day and all of those tears that I had been holding back to stay strong finally came flooding out. In less than 24 hours, life was about to change forever. I was scared something may go wrong with the surgery and I'd end up with some sort of paralysis. I was scared the surgery wouldn't be beneficial and make me better. I was scared to go out in public in the halo. I was scared for my family and friends to see me in the halo; especially my nieces and nephews. Besides crying at all the things that could potentially go wrong, I was also crying at the thought that the horrible pain that I'd been living with would eventually be gone once I had recovered enough. I had been fighting for years trying to find somebody to listen to me, and believe me; all that fighting was finally over since getting to Dr. F.

https://www.pinterest.com/pin/533817362060650010/

I decided I want to write The Halo Diaries in the event there is just one other person that it may help. I wanted lots of pictures and I wanted to even incorporate video of certain things to give a realistic view of what life in a halo is like. The more I read on the internet, the more I realized I couldn't find a story similar to mine; when I say that, I mean few that ended up in a halo without having some traumatic event. I also wanted to write to interact with those who lived in a halo to get as much advice as I can. Through this crazy medical journey that I've been on, one of the positive things that has come of it is getting to connect with other people to relate to and getting to know their story. 

Daisy working hard helping me write :)

I'm positive I'm not the only one who had some of these fears. I kept telling my family I'm not leaving the house because I don't want to be seen in public. Well let's just say that didn't work for several reasons:
#1: I had to walk the hallways in the hospital when I first got the halo on, and then I had to be wheeled to the car in a wheelchair through the hospital where people saw me.
#2: I needed fresh air and needed out of the house
#3 Most importantly It's not healthy! I've owned every other brace so I will own this brace. I will hold my head up high (literally since my halo has it stuck in that position). It will be okay. 

https://www.pinterest.com/pin/99712579224630737/

https://www.pinterest.com/pin/99149629265810327/

Next post will be about the big day I had been nervously anticipating...my neck fusion surgery. It will be the surgery that will officially match my age...number 26.

If there is anybody out there that has Ehlers-Danlos Syndrome (EDS), is in a halo, or was in a halo and would like to connect, please free to email me at 

kingmeg19@gmail.com 

NEW: People You Should Know Podcast: I had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen to.


* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey

** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/

24 Hours After the Halo: April 6, 2016

NEW! People You Should Know Podcast: I had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen to.

April 6, 2016
When I woke up the morning after the halo application on April 6th, I felt like I was almost in a dream. There was ZERO pain in my neck...not to say there wasn't pain in my skull at the pin sites. It was an unbelievable, surreal feeling. For the past few years I had been telling my physical therapists and my doctors all I need is something, or somebody, to hold my head up 24/7 so I could get some neck pain relief, and function restored to my R shoulder. As crazy as it sounds, I knew exactly what a halo brace was. I had read about them through  my own readings and I remember saying to my family I was willing to let somebody screw a brace into my skull for a short period of time as a test to see if in fact I got relief. To my surprise, the halo brace was recommended to me a couple years down the line and it did just that. It provided relief. Dr. F told me I was the first patient that he has ever had that told him that that they had instant relief in their neck once the halo was applied. That was a pretty good indicator to everybody that there is something wrong and a fusion would be beneficial. Next thing I knew, I was scheduled to have my neck fused one week later on April 12th. 

I'm not saying that I had no pain in my
body, but to have that horrid, sharp, stabbing,
neck pain gone was unbelievable

The video below was taken in Fall 2014. My neck moved more "normal" in this video than it did up until surgery two weeks ago. This video shows how much motion I had in my R shoulder with my neck in a neutral position vs. a flexed position. 

In case the video below doesn't work, here's the same video on Youtube: R Shoulder Increase with Neck Hyperflexion

I'm not one to take selfies of myself, but that morning I felt a selfie was warranted. I wanted to take a picture of myself smiling because I can't remember the last time I woke up in the morning and thought I looked relatively good considering I just had the halo applied to my head the day prior. I was smiling ear to ear because I had less pain, there were no furrow lines between my eyebrows, and my doctor helped me. What could be better? Even though my gut feeling was that the halo was going to help, there is always that little part of you that worries and asks, "What if this doesn't work? What if I feel worse? What if I put myself through this all for nothing?" The fact that none of those worries occurred was big enough reason all in itself to smile!! 

So happy to be feeling well overall.
When you live with chronic pain all over
your body, it is amazing how much better
you feel by getting rid of just one area of pain.

A little bit later I called my nurse in because I needed to use the restroom. This was going to be the first true test. Would I be able to get out of bed, and walk to the bathroom? I wondered what it would feel like having this big halo on top of my head and having to learn to walk with it. My body would have to adjust to the added weight and find its new center of balance. I had an additional challenge as well because I have such minimal use of my arms. I didn't have the luxury to push myself up with my arms to a standing position. Instead I hooked my feet on the side railings of the bed and used my abs to sit straight up. From there I slowly turned so my feet were on the ground. Instinct for anybody helping you to a standing position is to automatically grab your arms to help you up. Each time I had to say, "No, no, you can't grab my arms. I have to make sure I have my balance. Just stand around me in case I don't have my balance and start to fall." The first time I stood up I was dizzy. I was not expecting that. My mom was on my left, and the nurse was on my right. Both were holding me at my waist until I found my balance. It didn't take very long for the dizziness to go away, and I gave the go ahead to help me walk to the bathroom and I stayed on both feet the whole time! When I walked out of the bathroom, I wanted to see if I was able to stand by myself on both feet unassisted. Guess what?!? I did it and I was thrilled!

Don't underestimate the baby steps
You can't see them in the picture,
but there were people VERY close by to
help me if need be. 

I took those first hard steps, and next thing we knew, I got the okay to start walking short distances in the hallways! YAHOOO!!
This was the next goal on my list. The nurses told me as long as somebody was with me, I was allowed to walk short distances. So my mom and dad came with me. My mom had the camera so she captured this moment of my dad and I. 

My dad and I walking the halls

Just smiling in the hallway. I didn't realize it
at the time I grabbed these pants, but it says
STRENGTH on the outside of my left leg.

After walking the five minutes in the hallway, I was so tired! Your body really has to get get used to this new thing on your head, and the brace weighs an additional 5-7 pounds. When I went back into my room I wanted to lay in my hospital bed and take a nap. Laying in bed wasn't too comfortable for me. Trying to fall asleep in the halo is a huge challenge and it is so hard to get comfortable. One reason it is weird sleeping with the halo on is because your head is suspended in the air and does not touch a pillow. Your head is 100% immobilized meaning you can NOT turn your head in any sort of direction. If you have a problem like I do, where your arms don't move well, it is VERY difficult trying to maneuver pillows behind your head because you can't reach your head. It is also difficult to re-position your body because you can't push yourself off with your arms. Some people can try to sleep on their sides, but if both of your shoulders are bad that is not an option. So while I was in the hospital bed, it looked like I was meditating when really I was sleeping. 

I was sound asleep. It was the most comfortable that I could get.
The plus of the halo, is your head doesn't fall forward when you
fall asleep. The down side is your mouth drops open a little bit :)

Later that afternoon I wanted to try sitting in the hospital chair. For me, I was more comfortable putting a pillow vertically behind my back so there was more cushion. Unfortunately these chairs didn't have high backs so I couldn't sit in them very long. When I was at home though I was able to re-position my pillows differently on the higher back chairs to make myself more comfortable. 

Thumbs up on the left just because it felt like the right thing to do. Picture on the right shows
me able to raise my right shoulder in the air higher than it has gone since 2012 without
any person holding my head up (just the halo). 

Some of you may be wondering how in the world we got that shirt off underneath my halo when it came time to change. My neurosurgeon, Dr. F went searching for a shirt of any kind on the operating room floor so I could put it on before the halo was applied. We didn't care what type of shirt it was. When I got home, and it was time to change, there was no way for me to get the scrub shirt off without my mom cutting it with scissors. In hindsight I should have taken a picture of the cut up blue scrub shirt.  

At my appointment with my geneticist in March a couple of weeks before the halo application and then the fusion surgery, he warned me that people who do not have shoulder problems end up with really bad muscle spasms due to being fixed in a new position. He then said, "Since your shoulders are crap, the likelihood of this happening to you is quite high and you'll experience this worse than the average person." He then went on to tell me that I may require additional bracing for my shoulders, and I will need to be on muscle relaxers to try to tame the beast. He wasn't kidding about that, and was spot on. It has been a daily battle since I got the halo on. 

The next post I will be writing will talk about preparations to make my life easier for surgery. I'll will talk about pin care cleaning, and how the heck I manage to wash my hair and rest of my body while in the halo that can't get wet. That's all an adventure in itself. 

* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey
** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/


If anybody has Ehlers-Danlos Syndrome, who was, or is in a halo and would like to connect, please email me at kingmeg19@gmail.com