Monday, June 27, 2016

First Steps are the Hardest

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.

April 23, 2016
The weather was finally nice enough outside where it wasn't raining or cold. I could finally get some fresh air for an extended period of time, and sit in the sun without being too hot. Until you're in a sheep's wool vest 24/7 you have no idea how hot this vest gets. Even though I was hurting quite a lot, the pain was still nothing in comparison to the pain I had after my left scapula (shoulder blade) surgery the previous year. My pain medications were helping so I decided to take advantage of the nice weather, and sit in the front yard to paint a birdhouse with my nieces Lizzy and Emily.
My nieces and I painting our birdhouses to hang in the trees.
The highlight of my day was going to be watching the Chicago Blackhawks. This meant I needed to take a nap after painting the birdhouse so I would have a greater chance of staying awake during the hockey game. 
Practically all of my clothes don't fit with this halo. Words could not express how happy I was when I tried on my Blackhawks onesie and it fit! The Blackhawks also beat the St. Louis Blues in game 6 of the Stanley Cup playoffs to tie the series up 3-3 which was definitely something to smile about.
April 24, 2016

It was my first outing out of the house to a place other than a medical office. My niece Lizzy needed to pick up a new pair of shoes. It wasn't going to be a long errand so I decided to go with just to get out. I was fine while in the car (minus the bumpy roads), but as soon as my sister parked the car, and it was time to go inside the store, I was so nervous. It was my first steps out into the "real world" where people don't see a person in a halo brace every day. That meant people would stare at this contraption on my head since there is no way to hide it. I don't like when people stare but it is something you have to learn to accept when you're in a brace like this. People will stare no matter what, and taking those first steps out into the "real world" are always the hardest ones. To those that are scared to leave their house because they're in a halo, just do it. You'll be happy you did. It will eventually hit a point where you could care less if people are looking at you. Overall, most people will look at you compassionately and move on with their lives. Others may engage you in conversation because they're curious about what happened that caused need for such a brace. Sadly, some people are just flat out rude and gawk at you like you're from planet Mars; try not to let those ones get to you. Fortunately for me, on this particular day, I didn't encounter any rude people. 
You will notice my niece Lizzy in the background. That is her impersonation of somebody that would be rude staring at me.
April 25, 2016

The day started out great, and ended horrible. I had been looking forward to this day since the first time I stood up after the neck fusion; every time I was standing, I was having a lot more pain in  my neck because my left shoulder was ridiculously week and was pulling on it. My new braces to support my arms were finished, and were ready to be picked up! When I got to the medical office I couldn't wait to try them on. 
It felt so much better to have something for my arms to rest on so it could relieve some of the neck, and left scapular (shoulder blade) pain that I had been feeling.
This is what the braces look like from the back. They're secured by a large piece of stretchy fabric that velcros' in the front. 
This is Thomas, and he is the mastermind behind making this type of brace design for my arms. They're essentially arm rests that can travel with you. 
After my appointment, I went back home and relaxed the rest of the day. I was looking forward to trying the arm braces out in the evening when I would go for my short little walk that I force myself to do after every surgery. 
My niece Lizzy and I. The "arm rest" braces worked great. It was the first walk since my surgery that I didn't go back home wanting to chop my shoulders/shoulder blades off. 
You might be wondering what happened that made this day end so horrible; up until now, it seems like it was a pretty good post-surgical day. I'll tell you what happened...the Chicago Blackhawks lost to the St. Louis Blues during the Stanley Cup finals which meant they lost the series 4-3 and were out! I was watching the game in my room with my mom. I was medicated and let's just say I didn't handle this loss very well. I was absolutely heartbroken, and devastated. Pain meds mess with your mood and I was bawling my eyes out like a baby telling my mom things such as: "My life is over, and I have nothing to live for!"..."What am I supposed to do with my life?"..."This can't be happening! I'm supposed to watch the Hawks play while I'm recovering!"..."What will I use to distract myself from pain?"..."The only reason we lost is because we weren't in Colorado. Every year we're in Colorado the Hawks win the Cup. Every time I'm in Illinois we lose. I must not be meant to go to the celebration parade!" According to mom, it took everything in her to NOT take a video of all the stuff I was saying because it was hysterical. The only reason she didn't is because she felt bad for me. She says, "We could have won money if I took a video of you and submitted it to America's Funniest Home Videos." I still remember that night very well and I'll admit, my reaction was so over the top and ridiculously funny.
April 27, 2016

It was just one of those days that was rough...possibly because the Blackhawks lost. All kidding aside, after surgery it's always a roller coaster ride, and this particular day just happened to be a really rough one.  I was having a lot of pain in my neck. I could feel the muscles on my left shoulder blade that were repaired in January 2015 ripping, and I just wanted to escape my body because there was no comfortable position to get into. I just stayed home and rested. I think all of the activity that had been going on over the past several days had caught up to me and my body was saying, "Enough!" When this happens the best things you can do is just stop and let your body try to heal. The one good thing that did happen that day was that I finally got my hair washed. 
My mom washing my dog Daisy trying to assist. Again, it's really important that you don't get the vest portion of the halo wet. We use several towels to avoid this from happening & thus far, it has worked out really well.
After my hair was washed, and dried, it was then time to wash my pins again. Cleaning the pins gets old fast but it's just something you have to do. When you're tired and hurt, a lot of times you want to just push the pin cleaning off but it's so important that you don't do that. The last thing you want is to get the pin sites infected. 
I think my mom should have her nursing degree just from all the "learn as you go" experience that she has gotten with me over all these years. 
Cleaning of the front pins
April 28, 2016

Let's see, on this day I stepped foot into a restaurant for the first time. My mom and I did not eat there; instead we waited for our food order to be finished, and then brought it home to eat. There were many stares in the restaurant, and I wanted nothing more than to have the "Invisibility Cloak" that Harry Potter has. Seeing as no such thing exists, it was another "suck it up & deal with it" moment.
First time in a restaurant picture
Later that day was an interesting one. It was figuring out how in the world I was supposed to get underneath my vest clean since it doesn't come off.  I was told I wasn't allowed to use soap when cleaning under the vest, and that I also had to be laying down. For me, the best thing that worked was a long damp dish towel that could be pulled back and forth under the vest (kind of like you're shining shoes); then we would use a dry dish towel to dry off my skin.
At the bottom of my parent's bed is a chest which worked out perfect to stack some towels on so I could rest my head. To this day the hardest part for me is rolling onto my stomach, and then rolling back onto my back. It kills my shoulders & shoulder blades like no other. 
This is the "shining shoes" action to clean under the vest. When this was done, it was a key indicator that led me to believe that my muscles re-tore off of my left scapula because my skin was really hypersensitive just like last time. For me, getting my back "cleaned" is up there with one of the worst parts of being in the halo. If you're in a halo & are reading this, you probably won't have this issue unless you have damage to your shoulder blades. 

April 29/30, 2016

Nothing exciting occurred on either one of these days. I did figure out a little trick to make eating a bit easier. I started putting my food on top of a box so the bowl or plate wasn't so far away from my mouth. On the 30th, I just watched movies. My dog Daisy stayed by me to keep me company. 
It was much easier to eat once the bowl of food was closer to my mouth. I didn't make a mess nearly as much. 
Miss. Daisy
None of this medical stuff is ideal but I try my best to make something good come from it. 
Next blog post begins the month of May. If there is anybody that has Ehlers-Danlos Syndrome (EDS), is in/was in a halo and would like to communicate feel free to email me at 

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Friday, June 17, 2016

Recovery at Home Post Neck Fusion

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.

Surgery. If you've ever had one done, then you know it goes through a process leading up to the big day. You get a diagnosis. You get told you need surgery. You prep for surgery. You have your surgery, and then it's time to dig deep, and begin the recovery process that nobody really says what it will be like; unless you consider, "You'll feel some discomfort" a good understanding. If you've had multiple surgeries then you know that not all surgeries have the same recovery. Some surgeries have a fairly easy recovery, some are in the middle, while others are far more difficult. This was my first spinal surgery, and now that I was home, it was time for me to experience first hand where I thought this recovery would land on the scale of fairly easy, medium, or hard.
April 19, 2016
It was day one of being home from the hospital post neck fusion. As expected I had a long night. I slept in my recliner in my room because I could get out of it easier than my bed. Even though it was a long night, I did get more sleep at home because there weren't nurses coming in every few hours to check my vitals. There wasn't the background music of various alarms going off at all hours of the night from patient's rooms. I was glad to be out of the hospital. After all of the surgery that I've had done, I have my own routine down at home. I have things set up in such a way to make life a little easier for me. Of course things were difficult, but it was nice being around the comforts of home. My first day home consisted of me primarily sleeping. After surgery, all of your body's energy goes to healing the area that just experienced the trauma. The best time when this healing takes place is when you're asleep. Any left over energy is what allows you to stay awake.  Needless to say, I didn't have a lot of leftover energy that day. 
Nap in the middle of the day. You can never have too many pillows after surgery. As expected, that's my dog Daisy in her usual spot when I'm post-op. She's always by my side and was giving whoever took this picture the, "What do you want?" look. 
April 20, 2016
April 20th was similar to the previous day, minus the fact that I got my halo brace stuck in the blinds. Yes, you read that correctly. I got stuck in the blinds. One thing to know with the halo brace is you're not aware of your surroundings at first because the brace is quite large. It was evening, and I was getting myself ready to go to bed. I walked over to my window and leaned over to close the blinds. I didn't realize when I leaned over I got one of the strings tangled in on one of the screws. I couldn't reach my head because of the shoulder injuries, and I couldn't reach my phone because I was stuck to the blinds. This meant I needed to yell out for some help.

From my room I yelled out, "I need help!" My niece Lizzy yelled back, "One minute!" to which I responded, "No, now!" Lizzy came into my room and started laughing...honestly, how could you not? I told her I somehow managed to get myself stuck in the blinds while trying to close them, and I needed her to untangle me. Unfortunately, Lizzy couldn't reach. I told her to get Kelly (my sister). Kelly said the same thing too, "Wait a minute!" I told Lizzy to go in the hall and say, "No! You need to come right now because Meg's halo is stuck in the blinds!" It's amazing how fast somebody comes to your rescue when they realize you're stuck. Next thing you know my sister and my dad are in my room. Kelly was untangling me, while my dad was in the background laughing, along with my niece, and my sister. I too was laughing, but also crying at the same time because I hurt and was irritated that I was stuck. Who knew closing the blinds could be so complicated? I told my family they better get a picture of this because I might be mad in the moment but I will laugh at this down the road. To this day, I still laugh at the day I got stuck in the blinds. 
Fortunately this has been the ONE and only time that this has happened. Haha memory making at its best.
April 21, 2016
There wasn't much rest on this day until the afternoon. As I mentioned in the previous post, I was having trouble being vertical because of the weight of my left shoulder blade pulling on my neck, and I ended up making a sling out of a bed sheet with my sister in the hospital to support my arm. On April 21st I had an appointment to get fitted for some custom braces to support my arms. My appointment was in the morning around 9:00. Early morning appointments are always rough after surgery. It takes a lot of effort, and energy to get yourself up, dressed, teeth brushed, hair back, food in your stomach, and all that good stuff. By the time it was time to leave for my appointment I was thinking it was time to take a nap. 
Almost time to leave. My dad putting my hair up in a ponytail. I think this is one skill in life he never thought he was going to master. 
This is as good as the hair styling is going to get. Nice job dad! 
When my mom and I arrived at the office where the arm braces were going to be made, I didn't know what to expect. All I kept telling my family, and the doctors at the hospital, it that I just need something to support my left arm so I could walk around easier. Thankfully the man who made my arm braces (Thomas) had been working on it already for a couple days. He had an idea to support my arms by essentially making arm rests. This wouldn't put any weight on my neck, and it would still allow me to have some function at my elbow and hand.  
Thomas taking measurements around my waist so he knew how big of a waistband he needed to make
This was the prototype for the arm rest. Since it helped my left arm, Thomas said he would have the finished product done in a couple days. He was also going to make a brace for my right arm too.  
After my appointment I was more than ready to go home but told my mom we should stop at the nursing home first to see my grandpa. We were only 10 minutes away anyways, and I hadn't seen him in 2 weeks. Up until a few months ago my grandpa had lived with my family and I since 2007. He had some medical issues this past February which caused him to have to stay at a nursing home so he could receive proper care. So, I felt it was necessary to stop by and see him so he knew I was okay, and wasn't worrying too much. My grandpa is blind so he has absolutely no idea what type of brace I'm wearing. The best description that I've come up with, is that it's like having your head in the middle of a birdcage. To this day I don't think he totally understands it which is good. I don't really want him to know what I'm in. He doesn't need to worry any more than he already does. 
Touch is important at all ages. I told my grandpa he couldn't hug me like normal because I didn't want him to bang his head on my brace & it was painful for me to bend over to hug him, so he held my hands instead. 
Some things are worth not feeling good for. This is one of my new favorite pictures of my grandpa and I. 
After visiting my grandpa, my mom and I went home. As much as I wanted to sleep I first had to eat lunch. I knew if I didn't, I would end up feeling sick from the pain medications, and I also needed to eat to get the calories in me. The halo brace is an additional 7 lbs. so even when you feel like you're not doing much, you still are doing more than you think because you're carrying around the extra weight. After lunch I pretty much slept the rest of the day. 

Picture of my nieces and I later that day. They were happy to help me open up a
"Get Well" box that was sent.

April 22, 2016

It was a day of putting on movies, falling asleep during those movies, and then putting on a different movie to only fall asleep again. I was exhausted from the day prior. In the evening I forced myself to get up and walk outside to get some fresh air for 5-10 minutes to move my legs but it was the last thing I felt like doing. 

Beginning of the short walk. I used a blanket as a coat since my coat doesn't fit over my brace. 
Heading back to the house with not as much pep in my step. One thing I never thought would hurt was the cold wind brushing my forehead where the screws are inserted. Who knew?  As soon as I got home I changed into my pajamas and went straight to bed. Tomorrow would be a new day.

I think this is important to remember:
If there is anybody that has Ehlers-Danlos Syndrome (EDS), is in/was in a halo that would like to connect, please feel free to email me at

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

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