"Life is Better When You're Laughing"

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 25, 2016
It's my birthday! Honestly, I'm not a big birthday celebration person. Usually I dread them; more so since my initial injury because I am yet to accomplish the things I want too. Also, I had a great childhood that I miss. This birthday was different though. There was much to celebrate. I was alive all because a knowledgeable neurosurgeon listened, and stabilized my neck so it wouldn't move in ways it shouldn't due to the Ehlers-Danlos Syndrome (EDS). To celebrate we went out to dinner. My sister knows I hate attention, so she told our waitress it was my birthday and to do whatever she can to get all the people that were sitting on the patio by us involved. This led everyone singing me happy birthday...I was so embarrassed.

Post-embarrassment picture after everybody sang to me. The dessert was good; I like my sweets. One thing people might not know about the halo is that the pins can sometimes irritate the nerve that supply the eye muscles. This can cause the eye to droop down a little bit; this is why my left eye (R side of picture) is slightly drooping. 

June 30th, 2016
It was a warm summer day. Despite it being hot out it was important to me to go to the park with my nieces and my mom. As luck would have it, there were multiple kid's camps going on. This led to many stares. In this type of situation, you can't take it to heart. They're kids. Probably none of them have ever seen a halo before. So what do you do? You smile at them, and go about whatever you're doing. When the kids saw me playing with my nieces, I wasn't as scary looking and a couple came over to play, and some were inquisitive and asked questions. Use the halo as a learning experience for them. All you have to say is, "I hurt my neck, and this is a crazy looking brace to help my neck heal by keeping it from moving". After explaining, my nieces and I played bocce ball. Since I can't throw, I played by kicking the ball.

Once my nieces and I got tired of playing bocce ball, or should I say, the tops of my feet started becoming bruised from kicking the bocce ball, we decided to work on our balancing skills.

July 1, 2016
It was doctor day with my neurosurgeon, Dr. F. My appointment was to discuss my upcoming halo removal. We already had a tentative date of July 14, 2016. I did not want my halo removed; yes, I know, probably the only person in a halo that says this. There's a reason I didn't want it removed though. My neck felt good in the halo, and I was concerned my upper C spine was unstable from my skull-C2. The other reason I didn't want it removed was because my mom and I were heading back to Colorado so I could do some physical therapy, and my nieces were coming with. I wanted to feel good while we were there. Dr. F said it was okay to keep the halo on until I got back from Colorado, and that it was also a good thing because it would allow my C3-T2 fusion to heal more. The new halo removal date was set for August 25, 2016. 

Legitimately happy to have my halo time extended.

July 2, 2016
I was going on my first big outing since my halo application, and surgery in April. My family and I went to the zoo. It was so hot out, but it was worth it. I will say, my body was so sore the next day. The halo is 7-8 pounds. My legs and rest of me was so sore. It was still a fun day, and ended with a beautiful sunset. 

My niece Emily and I. We tease that a bull is my inner spirit animal because it has horns, and my halo has "horns". Emily is pretending to have them; hence the reason her fingers are sticking up by her head.

Neighborhood sunset

I very much believe this

July 4, 2016
Happy 4th of July in the U.S. Our tradition is to go watch the fireworks by the lake. It's typically crowded so my biggest concern, along with my family is that I would get bumped into once it was dark out. Fortunately, my family is creative, and having my nieces living with us meant we had glow sticks. We got to the lake early to get a seat and in the meantime my nieces decorated my halo in glow sticks. This worked out perfectly when it was dark because nobody bumped into me. 

My family and I

Never thought I would be decorated in glow sticks...in public. They did a good job though. It looks like I have headphones on. 

July 6, 2016
It was an exciting day. Since May I had been bringing my dog Daisy to become certified as therapy dog so we could volunteer and bring a little happiness to people. Her trainer said she also qualifies as a service dog for my needs. Daisy has been around my medical since she was a puppy. On July 6th she passed her test and graduated. There is a lot that I can't do, and there is a lot I want to do. I want nothing more than to help people. If that means bringing Daisy to the nursing home, or hospital etc. then it's a good thing. I've always wanted to work in the medical field; orthopedics specifically. Since I don't see that happening at this point in life, for now I'll try to help in other ways. 

Congratulations Miss. Daisy. You're official!!

https://uk.pinterest.com/pin/442126888400908616/

July 14, 2016
It was 3 days before my mom, nieces, and I would start the drive to Colorado. My nieces have never driven cross-country before like this so my mom and I were excited to show them. We took them out to lunch to talk about the drive, and we made a list so they could double check that they had all the things they'd need. 

Emily and I

I want people who are in any kind of brace to know that they can still help other people. You might have to dig deep to overcome your fears, or whatever it is that makes you self conscious, but you can do it. In doing so, you can potentially help a lot of people. 

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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!

First Sign of Trouble

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.

How life is ironic: 
It's ironic for me writing this post because it coincides exactly with where my life has been the past 2+ weeks. It's really weird writing it because it's like foreshadowing. Every concern that I had at the end of May was just confirmed exactly 18 days ago. So now you're probably wondering what happened at the end of May? I've been holding off on writing this post because I didn't know how everything was going to play out. I wasn't emotionally ready. In order for me to write these posts, I have to come to terms with everything and know the end result. Now that I know what happened, I can let you know what happened at the end of May. 

Once I returned back home from Minnesota on May 16th from seeing Dr. E I slept a lot the next several days. There really isn't anything worth writing about. It would be like me writing about how paint dries on a wall; nobody wants to read about that. Why? IT'S BORING! 

May 22, 2016

I was doing a bit better this day. My mom and I went to the nursing home to go have lunch and visit my grandpa. It was a nice day outside so we were able to have ourselves a nice little pinic on the patio. We started bringing this little portable radio that syncs to my phone and we play my grandpa's favorite types of music: Big Band, Judy Garland, Doris Day, Connie Francis, Frank Sinatra, Dean Martin...the list goes on. My grandpa isn't as conversational as he used to be so music is nice because it fills in the silence.

My grandpa and I having our picnic

May 26, 2016

It was a big day. It was the day that my custom cervicothoracic brace was getting made aka custom CTO brace. This is the brace that I'll go into once the halo brace is removed from my head.

Before heading to my appointment I had my mom help clean my torso. Apparently my dog Daisy felt it was necessary to help out too...or stand guard.

Daisy keeping watch over me

One thing I have mentioned before is that when your arms suck and you can't pull/push off with them then you end up substituting with other body parts. For me, that would be my feet. On this particular day the tops of my feet were hurting me quite a bit. When I looked at the tops of them I knew why. They were all bruised from hooking my feet on whatever things I could to pull myself up.

Now that I was clean and ready to go, my mom brought me to the orthotics building to have my new brace made. I had no idea what to expect. I had never had a brace like this made before so I had no clue what it would be like. I do know now it's like being made into a human mummy. Pictures explain better than words do so I put together a few collages to explain what's going on in each picture.

Top left: front of halo was removed to mold my front torso

Top right: plastic was put over my clothes and a cloth over my face

Bottom left: cloth being cut to shape how the plaster will mold my face

Bottom right: final look with the cloth...my mom kept teasing how I look like a nun from The Sound of Music

Top left: hard plaster being applied to my chest, chin, & jaw

Bottom left: plaster hardening. You're not allowed to move any muscles in your face while this is happening.

Right side: Ab workout galore. Between the weight of the halo, the plaster, my body and not being able to use my arms, I'd say I got part of my workout in for the day.

Left side: back side of plaster hardening. This was applied after the back portion of my halo was removed

Right side: this is when I immediately knew there was a PROBLEM! As soon as the back portion of my halo was removed, I couldn't hold myself up and started leaning forward. As this happened, I felt my skull, bones C1 & C2 slide forward. I had no way to verbally say anything because I wasn't allowed to talk since the plaster was hardening. Horror was going through my head and I felt myself starting to panic. The best I could do was gesture with my arms to get pillows between me and the chair to try to hold me back. It was really scary because my head shouldn't have been able to move since the front portion of the halo brace was still on me. So why did it?

This is the finished product of the custom cervicothoracic brace aka custom CTO brace. We picked it up about 10 days later.

Once the halo was secured back on my head I felt terrible. I felt like my head was like a chicken pecking with its head forward. I knew my skull and top two bones weren't in proper alignment. I didn't tell the orthotics guy because I needed my neurosurgeon to correct this problem. After my mom and I had left the building to go into our car, I leaned forward and felt this painful loud pop at the base of my skull specifically on the left side. I immediately started crying and saying over and over again my upper cervical spine is unstable and needs to be fused. I was horrified.

The next couple days I felt horrible. It hurt to be upright. It hurt to lay flat. It hurt to walk. It hurt to sit. The only way I was  semi-comfortable was if I was in a reclined back position. Next thing I knew, on Sunday May 29, 2016 I had sporadic shaking down my right leg like I had in Fall 2015. Immediately red flags started going off in my head because my physical therapist(s) always thought there was a problem in my upper cervical spine. Later that evening I emailed my neurosurgeon Dr. F about what I felt and symptoms I was experiencing. He wrote back saying he would have the nurse schedule an appointment for a halo readjustment, but on my movement fluoroscopy (like a movement x-ray) in Feb. my upper cervical spine looked okay. I emailed Dr. F simply stating something moved forward.

June 1, 2016
It was the day of my appointment with Dr. F to have my halo readjusted and the day started off horrible. I woke up on my R shoulder with burning nerve pain and my R scapula, shoulder joint, and clavicle (collar bone) were all dropped forward. I was in so much pain.

Not a good way to start the morning. The halo is supposed to hold my back up straight but because my R shoulder girdle was all dropped forward I was stuck in this weird, painful position.

On the way to the hospital I emailed my shoulder surgeon, Dr. E, what was going on in the event the hospital wasn't able to get my shoulder back in place. He was in surgery all day but said to have him paged in case I run into a problem. It was reassuring knowing there was help if need be.

Once we got to the hospital, I was brought back to an exam room. The resident walked into the room with eyes like Bugs Bunny and asked how long my head has been in this position. I told him one week. He then said, "One day?" and I said, "No, one week." He immediately got up from the chair to go grab Dr. F.

When Dr. F walked in, first thing he noticed was my shoulder. I told him don't worry about it because it happens all the time, please just fix my head. Dr. F had me sit in the chair. He had the resident hold my head while he loosened the bars with the wrench that sends shivers down your spine due to the noise. Once the bars were loosened Dr. F grabbed the bar over the top of my head and literally slid my skull back into place. My mom was in the appointment with me and she has never seen a skull move like that before. Dr. F then continued to adjust the bars to find a good skull/neck position but I kept getting a coughing reflex and a lump in the throat sensation. It wasn't until I said, "More traction to my head!" that I felt better.

Dr. F then said I had to go to the emergency room even though I said,  "It's fine I'll deal with it at home he." He said he had already called down to the ER so I had to go. While in the ER lobby I overheard one of the staff members say that I'll be in bed 3. I could see bed 3 from where I was sitting so I told my parents I will walk. As soon as I started walking there was shaking down my R leg again.

When I got to my room I immediately told my nurse I'm here for my shoulder but there is a problem with my R leg. My shoulder was looked at first because that's why I was sent initially. Surprise, surprise, my shoulder history was too complex and nobody would touch me. The ER doctor asked me what I needed to get things back into place and I told him IV Valium. After a lot of that, my muscles finally started to calm down enough so my arm was back by my side.

Uncomfortable would be an understatement

This is what we call improvement; arm is at least closer to my side

Now that my arm was relatively by my side, my leg could be looked at. Neurosurgery was sent down but there was nothing that could be done for it. Like past times, it was something that just had to run its course. The theory is that when my head was readjusted, swelling occurred putting pressure on my spinal cord, or there was a stretch on my spinal cord that occurred. Either way, it irritated the nerves that control walking to my R leg.

Here is a video of what the walking looked like:

The gut feeling that I had that there was trouble on this day at the ER...I was 100% right. I just had surgery again 2 weeks ago. Just goes to go show you, YOU know your body best. Since I'm only 2 weeks post-op it's harder for me keep up with my blog regularly. * *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey 
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The more awareness about EDS, shoulder/scapular injuries, craniocervical, and cervical spine instability the better!! As always if you wish to communicate you can email me at kingmeg19@gmail.com

A Pleasant Surprise

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.


Now that I had been in the halo brace for almost a month, I realized it is different than what I had anticipated it to be. I thought sleeping was going to be horrible in this brace. To my surprise, sleeping was actually better for me than it was before surgery. I know, it sounds crazy because I'm not able to move my head whatsoever in this brace. The thing is, before surgery I slept absolutely terrible. Since the end of 2012 my neck was always flexed forward so my chin was laying flat on my chest. Initially, sleeping with my neck fixed in a neutral position was strange to say the least. Over time though, it has become more "normal". The other thing that wasn't as bad as I thought it was going to be, was the pain in my neck after my fusion. Did I hurt? Absolutely; there is no doubt. As much as I hurt though, it wasn't the same debilitating pain that I had after my scapular surgery the previous year. Since the halo brace supports the weight of my head, and completely immobilizes my neck, my neck muscles could finally chill out for once, and didn't have to be in a constant state of spasm to stabilize my neck. It was, and continues to be a nice break. This surgery, was the fastest that I was ever able to venture out since 2012. It was a pleasant surprise.

https://www.pinterest.com/pin/127297126938899463/ 

May 1, 2016
I wanted to go out to dinner for the first time since surgery. Knowing that I wanted to attempt doing this, I knew I had to lay low, and sleep so I would have enough energy to get through dinner. After previous surgeries, the idea of going out to eat was never on my mind. In hindsight, I think the main reason those previous recoveries were so hard is because there were a lot of issues stemming from my neck that I didn't know about yet. I always attributed my pain and symptoms to my shoulder and scapula injuries. In the late afternoon/early evening my family and I went to a restaurant five minutes from our house. It was nice to get out. 

Out to dinner with my family. Those are my nieces on the left and my mom on the right; not pictured are my dad and sister. When we went out to dinner I knew if I didn't feel well, the worst case scenario was that we would get our dinner to go. I never once felt like I was "stuck" at the restaurant. The good news though, is that I made it through the whole meal.  

When we got home I was completely exhausted. It wasn't too long after I laid down that I fell asleep. It didn't take too long for Daisy to fall asleep either. 

May 2-3, 2016
I will admit, going out to dinner took A LOT out of me. Unfortunately, a lot of times after surgery, you ended up paying for whatever activity you choose to do the day after. Surprisingly, it wasn't my neck that was giving me the most trouble. It was my left scapula. Ever since surgery on April 12th, my left scapula has continued to give me issues. The pain I was experiencing was consistent with a tear of one of my scapular muscles again. My guess was my upper trap because that muscle had to be detached during the fusion and was then reattached. Sadly, I've had this particular injury way too many times, and I know exactly what it feels like. I was anxiously awaiting my appointment with Dr. E in Minnesota on May 13th to basically confirm what I was feeling. 

May 4, 2016
When I was put in the halo, and shortly thereafter had the neck fusion, one thing I never really gave any consideration to, is that I wouldn't be able to do my "trick" to do my hair anymore. Since 2006, I had been bending my neck forward every single time I wanted to get my hair up, get my hair brushed, wash my hair, get an itch on the top of my head etc. because I couldn't reach my head due to my shoulder and shoulder blade injuries. Now that my head is fixed in an upright position, I have to rely on somebody else to do my hair for me. Even as I type this, once the halo eventually comes off, I'm going to have to figure out a way to do these tasks since I won't be able to bend the same way anymore. It'll be another learn as you go situation.  

Fortunately for me, I have a sister who is pretty good at doing hair. She washes my hair for me, and on May 4th I asked her if it was possible to get my hair in a braid (of course I had good timing, and asked her this AFTER she just dried my hair instead of before). She said she would give it a whirl. This is the day she officially earned her title as, "The Halo Hairstylist". Just about every single time she washes my hair now, she puts my hair in two braids because it's easier for me to deal with, and it doesn't get dirty as fast. 

Attempt number one of trying to braid my hair in a halo

Sisters

May 5, 2016
It was nice out this day. I was primarily writing outside and enjoying the fresh air.

This was the finished product of my sister braiding my hair while it was dry. Not too bad for a first time braid attempt in a halo. It didn't even get too messy while I was sleeping.  

The crab apples in our tree were in bloom which made our backyard smell really good.

May 8, 2016
It was Mother's Day here in the United States. My family and I wanted to do something fun for my mom, but our options were limited because I didn't have the stamina to be out for the entire day. I suggested to my sister that we should all go for pedicures since it would be something I would be able to tolerate, and it's something our mom would enjoy. What's not to like? 

Getting the pedicure felt so good. They massaged our calves and feet too. My calf muscles were so sore from the additional weight from the halo. Every day for almost the past month felt like a work out whenever I went for a walk. To any halo people out there, getting a pedicure is definitely something you should get done. 

A picture of all of our freshly painted toes. 

All the girls in the family; my nieces, my sister, me, and my mom. We went in front of our house to get our picture taken by the tree. The tree is really pretty in the Spring. It grows hot pink flowers all over it. 

Picture of my sister and I with my parents. 

May 11, 2016
It was the day my nieces had been anticipating...decorating my halo. I had stopped at the store earlier in the day with my mom to pick up some little jewels that just stick on. I also picked up some sequenced letters so we could put a word on the front of the halo. 

I felt completely ridiculous but was being a good sport. My sister and my nieces thought it would be funny to put the word, "Ouch" on the front of my halo. One of the workers at a store we go to suggested I put the word, "Help". Sometimes you have to be able to laugh at yourself and make the most out of your situation. 

The finished product. My nieces were very proud of their decorating skills. 

May 12, 2016
It was finally the day my mom and I would drive up to Minnesota to meet with my doctor. The car ride felt exceptionally long. It was nice having my head and neck stable in the brace, but it was really difficult sitting in the car upright for that duration of time. I could only lean the seat back so far because when you're in a halo, your head is suspended and doesn't touch the back of the seat, or even a pillow for that matter. To make things a bit more comfortable, I roll a small blanket that I have and put it behind my neck so It rests on that.   

Here is a picture of what it looks like when I lay on my back. Your head is literally suspended when you're in a halo. I had this picture taken last week. There is no way I would have considered laying flat on my back, on the floor like this almost a month out from surgery. 

This was the first view of my new "battle wound". It extends down further than what you can see here. The steri-strips were on for just about 4 weeks. They stayed on longer than normal because I can't take a regular shower so that area doesn't get too wet. The redness is just a reaction I get from adhesives. It eventually went away.  

When I saw the above picture of my incision, I had a flood of emotions. The first thing I said out loud to my mom was, "I'm going to look ridiculous with all of these incisions next to each other on my back". She smiled and said, "No you won't" followed by, "You earned them". At the same time I was picturing what my upper back will look like, I also felt a huge sigh of relief because there was validation. Every single symptom that I had complained about that seemed really odd and out there, made perfect sense. It's my proof that something was very wrong, and it wasn't a problem that was going to be cured by seeing a psychiatrist. Unfortunately what I went through in the quest for a neck diagnosis happens ALL OF THE TIME! It's sad and really unfortunate because there are so many people like me, who are just looking for a diagnosis and treatment plan so we can move on with life. Many of us get bounced from doctor to doctor for years, and get told ridiculous things like, "It's all in your head"..."You're drug seeking"..."You're attention seeking"..."There's nothing wrong with you"..."You just have to deal with it". Quite frankly, if any of us did end up seeking care from a psychiatrist, it would be because those doctors that made those ridiculous & hurtful comments caused self doubt. It's mental torment, and is so hard to continue pushing forward and take those comments and wipe them off your shoulder like they never existed. To those that keep being told, "There's nothing wrong with you!" keep plugging along, and sooner or later you'll hopefully end up in the hands of a doctor who will take care of you. I am proof (along with many other people) that you can be told, "There's nothing wrong!" when there's a big problem the entire time. 

http://quotesgram.com/listen-to-your-body-quotes/ 

The next post will be about my time in Minnesota when I had my appointment with Dr. E to find out what is going on with my left scapula. 
Feel free to contact me at kingmeg19@gmail.com     

* *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/

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. 

https://www.pinterest.com/pin/563161128382023342/

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 hair...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 kingmeg19@gmail.com 


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