The Day from Hell

You yell, "BOOOOO" as you jump out from behind a wall. You follow it up with a, "Haha, I scared you!" In majority of cases watching somebody jump in the air, or drop down to the ground, with a high pitched scream is funny. I get a kick out of scaring my nieces at home. When they do their blood curdling scream, "grrrr" at me, and then laugh it puts a smile on my face. I then say, "I love you!" as they walk away and reluctantly say, "I love you too."  So why am I talking about scaring people? Because being scared can have negative effects on individuals with EDS whose joints subluxate (partial dislocation) and/or dislocate (joint pops fully out) easily. 

November 15, 2016
The day started off a bit more difficult than my typical baseline pain day. My right shoulder, and my right scapula (shoulder blade) were subluxated when I woke up. My mom couldn't get them back in due to me being in the halo. Since the halo covers your back it makes it difficult for someone to get a good grasp of the scapula, and manipulate it back to where it should be. Fortunately I had physical therapy before noon so I thought at the very least they'd be able to partially get my scapula back in place, and tape my shoulder with leukotape. Leukotape is stronger than K-tape. 

Reminder of how the halo covers your back. As you can see, the halo covers both shoulder blades. It was somewhat beneficial at times to stabilize my shoulder blades because there's a compression component but when the shoulder blades decide to shift out of position, you have a really big problem. 

When I went to physical therapy it was confirmed my scapula and shoulder were subluxated. My physical therapist taped my shoulder joint which helped some; however, it was challenging to get my scapula back in place. We didn't do a ton at physical therapy because I was in a lot of pain, my shoulder was being temperamental, and we didn't want my shoulder to shift more out of place. When therapy ended my mom and I went home. The plan was to get my hair washed. I was sitting on the kitchen counter setting up the shampoo and conditioner so my mom could wash my hair in the kitchen sink; again, the halo can't get wet in the shower. While I was sitting a strong cross breeze went through the house, and slammed a door shut loudly. This scared the crap out of me, and startled me big time. No big deal, right? Wrong! Since the slamming of the door blindsided me, and I was completely relaxed, my shoulder and scapula dislocated. With EDS you're always constantly aware of your surroundings. You consciously think of tightening your muscles when out in public, walking around...basically everything, because tightening your muscles helps aid in stability. If you're completely relaxed and something happens our lovely EDS tissue is far too weak to stabilize our joints, therefore they pop out. That's exactly what happened to me. This has happened multiple times in the past but this was the first time with the halo on. Let me tell ya, it was a living nightmare. The halo makes it 100 times harder to deal with.

My mom was sitting in the chair, and saw it all happened. We locked eyes on each other. I started laughing for two reasons 1.) a door slammed and significantly popped my right shoulder and scapula out, and 2.) I was in shock. I sat on the counter with my legs crossed leaning forward with my right elbow sitting on my knee. All I kept doing was chuckling, crying, and saying, "Oh no, this is bad. This is really bad. This is really, really bad. Crap. What am I supposed to do? As soon as I stand up gravity is going to make this shift out even more. Mom? Mom? Mom? What do I do? Maybe I should just sit here all day? If I stand up I'm pretty sure I'm going to end up in the emergency room because I can feel my shoulder blade sticking into the halo, and trying to hook around the outside of it. Mom? Tell me what to do!" My mom calmly said in a comical tone, "Well hon, you can't just sit on a kitchen counter all day. Why don't you slowly stand up, we'll see what things look like, and then determine if we go to ER." I agreed with this plan. I stood up and my R arm just dropped. I was stuck leaning forward due to the scapula positioning. I had my mom undo the Velcro strap over my shoulder so I could assess things better in the mirror. I couldn't see my shoulder well in the mirror due to not being able to turn my head. I had my mom take a picture. I looked at the photo and said, "Time to go to the ER." 

Ouch!

Shortly thereafter my mom and I were in the ER. Fortunately, there were no other patients waiting to be seen. I was brought back right away. Then the fun began with all the questions. How did you injure your shoulder? Did you injure it skiing? Me: "A door slammed shut, and I was startled. I have EDS." Everyone had that look on their face that said, "Seriously?!" The questions continued. What happened to your neck? Why are you in a halo? Did you need surgery? Me: "Can we please address my shoulder?" The nurse then gave me a gown. I chuckled and looked at my mom and said, "What is this for? The halo covers me. It's not even going to fit." I put it on anyways. My mom tied it around the bars of my halo hahaha. I was a fashionista for sure. The doctor came by and evaluated my shoulder/scapula/clavicle. I was brought back to x-ray which confirmed things were out. The main culprit was the scapula. The scapula is the foundation of stability for the shoulder girdle. Without a strong foundation aka scapula, the shoulder joint, and clavicle can become unstable. An example being: in my case, my surgeon attached an Achilles tendon allograft from the bottom outside portion of my scapula, pulled it up on a diagonal, and attached the graft to my spine. This allowed my arm to be able to move because there was a solid foundation, and helped with the shoulder joint instability. Hopefully this helps clarify the importance of having a stable scapula.

As you can see, that is what we call a very unhappy scapula on the left. It was stuck like this causing instability in the shoulder joint. The positioning of the joint is not very good. When you look at the picture on the right my scapula is back in position. My shoulder joint is in position, and things are significantly better. 

The ER doctor decided it was best to call orthopedics to come down and see me because it was a complicated situation due to the varied problems in three locations, and the halo. In the meantime they had started an IV in my elbow after stabbing me a million times (another lovely issue with EDS) and I was given IV Valium which is a muscle relaxer to try to get my muscles to chill out. I was also given pain medication. 

I wasn't kidding when I said my mom tied the gown to the halo bars haha. That's my beautiful clavicle (collar bone) sticking out for your enjoyment. No need to thank me. 

Before orthopedics came down I texted my shoulder ortho about what was happening. Within a few minutes my wonderful ortho from Minnesota called. My mom talked to him because my IV was in my elbow, and I couldn't get the phone to my ear. My mom explained the situation to Dr. E. She then held the phone to my ear so I could talk to him. Dr. E told me to have the doctors give me more Valium to relax the muscles. He then said we'll address my scapula once my halo is removed. After telling me to hang in there, and wishing me well, Dr. E then spoke with the ER doctor about how to take care of me. 

Orthopedics eventually came down. They had never dealt with a patient whose shoulder girdle was out of position, and also in a halo at the same time. Could we make this more complicated? The orthopedic told the nurse to give me a lot more Valium, and pain medication because my muscles weren't relaxing. One of the problems with EDS is that we metabolize medications fast, making them less effective. The goal was to get my arm back in my external rotation shoulder brace. After multiple attempts that failed to get my scapula back in place, the ortho had me lay on my left side. The ortho had another medical personal assist. They pulled my right arm down towards my feet, and then swung my arm forward. An assistant held my arm in this position. The orthopedic then used all his body weight to mobilize my scapula back to where it should be. It was like having chest compression done on my side. Believe it or not I'm usually not screaming or swearing during this process. This time the pain was unreal. I may or may not have said a word that starts with F and ends in K. I said it once, and then apologized. Oops. My bad. The ortho finally got my scapula somewhat back in place, and my arm in my shoulder brace. I cried so much, and was exhausted.

One would think the hard part was done. You'd be half right. Getting my scapula back killed. Now the problem to overcome was getting me sitting upright. Upright means gravity. Gravity means my shoulder will come out. The nurse ended up sneaking into the physical therapy department and grabbing more leukotape because every time the bed was raised, my shoulder was spasming uncontrollably. She put a ton of tape on my shoulder to pull it back so it wouldn't come out of the socket. I was maxed out on IV Valium so all we could do was baby step me up. 

The time had come where I was finally sitting. The pain was intense though. Having the ortho pushing his body weight on my side, my muscles spasming like no other, and the pull of everything on my spine had me feeling miserable. Ideally the doctor and nurse wanted to admit me for pain control but I didn't want to be in the hospital. At this point it was nighttime. The nurse talked to my mom and I. We decided I would go home but if the pain is too much then we'll turn around and bring me back to the ER. Going to an ER for pain control is always nerve wracking. I don't want them to think I'm drug seeking. The nurse made a point of writing in my chart there was possibility of me coming back, and she was going to speak with the ER doctor. This meant the world to me. Fortunately with medication regimen at home I was able to avoid the need to go back to the emergency room! Score!!

So that was the day from hell. Little did I know the quote above would be foreshadowing what was to come. I had 15 days left in the halo, and life would take me to a place I never was before. 

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*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 too.

Traveling Halo of Hope

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.

Anybody that reads my posts knows that I try to incorporate fun into my life to offset the medical. They would also know that despite whatever brace I'm in, I will still leave the house and go about life as much as I can. This was no different in a halo brace. The only difference is it much harder due to being self-conscious. I would put my sunglasses on and pretend to be invisible like in the movie, "Big Daddy". This post is a bit different than my previous ones because it's kind of a "dull" period and there are many pictures that show me going about life in the halo. 

When I had my appointment with my neurosurgeon, Dr. F, it was advised that I drive to Colorado instead of flying because I was having a really difficult time being upright. Driving to Colorado would give me the ability to recline my seat back, and prop with pillows. July 18, 2016 was the day my mom, nieces, and I set off on our adventure. That night we stopped on the west end of Iowa, and the girls had a fun time swimming in the hotel pool. That's one of the downfalls with the halo. You're not allowed to go swimming, take a shower, or do any activity too close to water that will potentially get the lining of your halo wet. If the lining gets really wet then it might have to be changed because it can get smelly, moldy, and irritate your skin. This never happened to me but I would imagine it is not a pleasant situation; especially since it's hard to scratch under it as it is. 

July 19, 2016 It was day two of our drive. That night we would be at the west end of Nebraska. On our way we stopped at an attraction in North Platte that goes over the highway. This historical audio attraction that Disney painted inside discusses how the settlers in their Conestoga wagons made their way west to Colorado. It also discusses how the railroad and train changed access across the country. 

The attraction literally goes across the highway!

This is Lake Mcconaughy. It's in Ogallala, Nebraska. It's a huge lake, and from what you can see, it's also very pretty. 

July 20, 2016 by this day I couldn't wait to arrive to our final destination. My body had enough of being in the car and I was hurting. Even though I was hurting I made sure not to let it on. This was the day we had all been waiting for. We were going to finally arrive in Colorado! It's tradition for my mom and I to take our picture by the "Welcome to Colorful Colorado" sign, and this time we had my nieces. It's also tradition to stop at a restaurant called Lucy's. 

One of things we've tried to teach my nieces is that there is beauty in the little things. On the drive we pointed out the clouds, wild flowers, corn...lots and lots of corn, big blue sky, big solar windmills, sunsets etc. There are many lessons that can be taught, and one of them is how we look at the world. 

July 21, 2016 we finally made it to our final destination and we couldn't be happier. That first view of the mountain range when you're on the highway is breathtaking.  

A beautiful day to drive into the mountains!

Say, "Cheese" in front of Dillon Lake

July 23, 2016 ingenuity is one of the skills that my parents and I have gotten GREAT at. At home my dad built this wood "plank" for me to lay on so we could wash my hair. In Colorado, I laid on the kitchen counter because I couldn't fit in the shower. 

July 27, 2016 I went on a pedal boat with my niece Lizzy while my niece Emily was on a paddle board. I make a huge effort to try to find activities that I can participate in. Despite pain, it's important to find things that give enjoyment. It's also a good distraction from the pain you're experiencing. The pedal boat was something I could do since there was no arm involvement, and it was like riding a bike on water. The only down side was the sun was incredibly hot that day, and I was baking in my halo. 

My nieces and I 

July 30, 2016 My mom and I took my nieces back to look at the spectacular view at Dillon Lake. In the distance there were sail boats. On days like this one, we love nothing more than to enjoy our time outside. We stopped at Subway to pick up sandwiches and ate them by the lake. 

July 31, 2016 My sister was in town so we went to Rifle Falls State Park. I LOVE it there. It is so pretty, and they have a nice trail that isn't too difficult to do. On this trail you get some beautiful views of the waterfalls, as well as the mountains. 

My sister, mom, and I

While on our hike there was this beautiful butterfly that kept landing on me. It stayed on me for a good 5 minutes. 

August 1, 2016 Starting to sound redundant, but yet again it was another beautiful day. We went to the top of Vail Mountain where there are activities for my nieces to do such as: high ropes courses, ride a roller coaster, slide down the mountain on inner tubes, zip lining etc. I had fun watching them do the high ropes course, and I enjoyed walking around. 

Taking the gondola up to the top of the mountain

Picture at the top of the mountain over 10,000 ft. 

August 2, 2016 in 2013, my mom and I were walking on this trail that leads to a golf course. On the walk there is a bridge. Back in 2013, my mom was being goofy and pretended to be a ballerina. Since that day, we have dubbed it, "Ballerina Bridge". My sister's trip wouldn't be complete if she didn't get to experience it. My niece's saw this the year prior. 

This is the closest thing to a ballerina that I'm going to get haha

August 3, 2016 Colorado National Monument. If you've never been, I would highly suggest going. It is just gorgeous there. In 2015 we didn't have time to show my sister so this was a must see. We wanted her to see the mesa and the red rocks. 

Various views from the monument

Just a little spoiled; I had my own personal umbrella holder to keep me in the shade. I was getting so overheated. The weight of the umbrella was too heavy for me, so fortunately my niece did a fantastic job of trying to keep me cool!!!

August 4, 2016 It was an exciting day. I got to meet a fellow "Zebra" aka EDS friend. We had been communicating via email for some time, and we were both going to be in the same area on the same day. We were able to meet in person and grab some lunch. It was a pleasure to finally meet a fellow Ehlers-Danlos friend in person. She too has cervical spine instability like me, and we see the same surgeon. Small world!

Not the sunniest of days but it didn't damper on our parade. 

August 7, 2016 Despite not feeling too swift, it was, and still is important for me to try to get out every day and walk. One of things to know about EDS (Ehlers-Danlos Syndrome) is when the exercise stops, the muscles weaken which leads to further joint issues. I already have enough joint issues so I try to keep the ones that are in relatively good shape, good. Oftentimes this means going out for a walk when it's the last thing I feel like doing. The view where we walked was pretty good motivation!

August 8, 2016 Everyone can use a little pet therapy every now and then. We decided to go to 4 Eagle Ranch. It's a ranch that has a ton of horses, some goats, llamas, chickens, turkeys, and bulls amongst other things. It wasn't crowded at all. We had the place to ourselves. 

Sweet baby horse

Making friends with the goat

Just having some fun

August 10, 2016 There are a lot of pretty things in life. The Continental Divide is one of them. Seeing the snow capped mountains, being cold because you're over 12,000 ft in the air in the middle of summer, and having the wind fly through your hair is always fun. My nieces had never been there before; although, they've heard about it a lot. 

Attractive individuals, right? 

August 11, 2016 Fun at the rodeo!! 

It was REALLY crowded. We were smart enough to get there early so we could sit at the top and I could lean against the fence. This worked out well until I went to stand up and got stuck to fence and popped one of the buttons off of my halo. Fortunately my niece found the button. I have a pretty good track record with getting stuck to things haha

August 14, 2016 it was a quiet day. My nieces flew back to Illinois the day before. I went and sat at one of the tables with an umbrella by the pool, and worked on drawing one of the tigers that I had started. 

Beginning stages of drawing one of my tigers. Unfortunately this is still as far as I am due to my R shoulder/scapula not wanting to cooperate.

 August 15, 2016 final sunset before my mom and I set off on our drive to Minnesota to meet with Dr. E. I love the reflection of the sun on the water. 

August 22, 2016 It was another day of having to get creative. I had to get my hair washed before my appointment with Dr. E the next day. Cleaning hair while in a halo, in a hotel, is a whole new level of difficulty. It was also a funny experience. Ultimately, we ended up dragging two metal end tables, draping them in towels, and getting me on the tables without falling off. It was quite interesting but it ended up working out well. 

Mission accomplished! I have clean hair. 

August 23, 2016 I had an appointment with Dr. E in Minnesota to discuss what we were going to do with my right scapula. As one can imagine, it would be difficult to examine my scapula (shoulder blade) because the halo covers my back. I was able to loosen the vest enough for Dr. E to do an evaluation. It was determined that we would at least stabilize my scapula like we did to my left one in 2015 with an Achilles tendon allograft (cadaver tendon). Before going into all the details of what would be done, Dr. E and I wanted to see how my halo removal appointment was going to go which was set for August 25, 2016. If the appointment went well then we would set me up for scapula surgery. If the appointment did not go well then my shoulder/scapula would have to wait and we would have to see what my neurosurgeon said. In the meantime I asked to have a partial custom brace made to support my arm because I knew my muscles were detached from my scapula yet again, and it was killing me. 

Now this is look! As if the halo didn't attract enough attention, throw on this shoulder brace. Everybody assumes I was in an accident (I don't blame them).

All these smiley pictures that you see are of me trying to live my life as best as I can given the ever changing circumstances that accompanies EDS. They're snap-shots of moments in time during the day. They do not depict what the reality of my daily life looks like. Little do you know I was in physical therapy a few times a week during this time to work on my shoulders/back/hips. There were days I was having trouble walking due to shaking/tremors down my R leg. I was crying every day at some point because the pain was so bad; especially my R scapula. On August 5th I went to breakfast with my mom, nieces, and sister. In the middle of breakfast I broke down crying because of the pain since my scapula moved out of position. I left and had my mom bring me to the emergency room. Those that know me, know that the emergency room is a last resort. 

My hope with this post is that it shows that you can still enjoy moments of your day despite being in a lot of pain, being in various bracing, or being self conscious. Chronic pain is a balancing act. 

Due to the complexity, and being in a halo, nobody wanted to try to manipulate my scapula back into position. Instead they put an IV in, and gave me a ton of muscle relaxants in the hopes that it would un-clench my muscles and my scapula would move relatively back to where it's supposed to be.

My perspective on pain has changed a lot since 2013 when I started writing my other blog, My ImPossible Medical Journey (which I still need to get back to writing). There is one post in particular where I mention that I don't think pain is a good enough reason to not live your life, and participate in the activities life has to offer. That comment was ignorant, and I wish I didn't make it; however, I won't change it because that's how I felt when I was writing about life in 2008. Little did I know (back then) that severe pain can inhibit your ability to do daily tasks, and live your life. My viewpoint on pain has done a complete 180. Unless you've lived with severe, debilitating pain, then this might be a concept that is difficult to grasp. When I made that comment, I had already had 8-10 surgeries, was awaiting more, and trying to figure out other medical issues. I most definitely had pain, but it was absolutely nothing compared to the pain that was to come. 

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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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