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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  1. Looks like you're doing great! Glad you are getting out and about and enjoying the weather. My aunt has breast cancer that spread to her spine and ate some of her bone so she is in a halo too. Love your blog and can't wait to read about your journey!

    1. Lots of well wishes being sent to your aunt! Tell her to stay strong. My mom had breast cancer in 2005. She's doing well now. Thank you for your kind words!!