Recovery Continued 2016

First, and foremost sorry to all of you who have been reading this blog and it came to a sudden halt. There was a lot of medical that interfered with my ability to stay on top of this blog, and because of all of the medical, I couldn't spend my time writing about more medical. I love writing, and I get a lot of enjoyment reaching out to people. Sometimes I have to take a step back because every second of my life can't be consumed by writing about my health, and how I deal with it. My stepping away for a little bit turned much longer than I anticipated due to additional surgeries that needed to be done. I hope you all can understand. 

Where I left off was continuing my recovery from skull-C5 fusion. I was still in the halo brace. I was less than a month postop and recovery wasn't going too well. The pressure in my head was horrible which was inhibiting my ability to be upright. I had to lay on my back constantly to make the pressure subside. I wasn't able to live my life; it was simply going through the motions. My parents and I knew I needed to get back to Colorado. With that being said, I will now pick up with where I left off.

September 2016: When I got the okay from my neurosurgeon to travel to Colorado to see if the climate would help me, I couldn't get there soon enough. If it actually worked, I would have clicked my heels together like Dorothy in The Wizard of Oz to get back. I had been traveling to Colorado since 2012. The first time I went was to have a shoulder surgery, and the times thereafter were for physical therapy. I noticed when I went to Colorado I always felt much better. It's less humid, and the high altitude was good for my joints. One of my surgeons documented in my medical clinic note that it is a known phenomenon in certain patients with Ehlers-Danlos Syndrome (EDS) that we do better in high altitude because there is less pressure on the body, and there is room for the joints to swell; this means less subluxations & dislocations. I am one of those EDS patients who does better in the mountains. 

September 27, 2016
The day arrived where my mom and I would begin our journey back to Colorado. Instead of my mom and I just traveling, we had an additional companion. Her name is Daisy, and she is the best dog ever!! This was the first time Daisy was going to be going to begin her cross country road trip experiences. She was definitely up for the challenge because she loves going for car rides. 

The beginning of Daisy's great adventure

Being this was Daisy's first road trip we learned new things about her. Some of these things include: she's scared of semi trucks. Every single time a semi came on her side of the car she would get off of her seat, and try to climb on the other seat which had stuff on it. We learned she doesn't like to go to the bathroom in public places. Mom and I were literally out at two, and three in the morning trying to get her to go potty. When she did go, we then had to praise her like she was a toddler, and clap and sing like imbeciles, "you're such a good girl" so it would make her happy, and in the hopes she'd go to the bathroom easier next time. I'm sure we looked quite ridiculous. Good thing it was middle of the night and nobody was out. We also learned she likes to sight see. She would sit up for long periods of time and look out her window. She was most amusing when we were in the mountains. Daisy looked out the window so much.  

October 1, 2016
Unlike past travels to Colorado we gave ourselves an extra day to drive. The extra day was for my body because I was just approaching one month post-op, and we didn't know how Daisy was going to do in the car. Fortunately she did great. We went up into the mountains, and arrived to our final destination!! I couldn't be happier. As we drove west, and started driving away from Illinois the pressure in my head was improving day by day. I able to be upright more as we went up in altitude. Once we got into the mountains though, my gosh, what a difference!! I was actually able to be upright and I felt like a new person. It was amazing!

Finally upright! Look at those Aspen trees. It's stunning in the fall.

Besides the pressure in my head feeling significantly better, my body felt better like it always does, and my soul was filled with so much happiness. There is something soothing about being completely surrounded by the mountains, where I feel like I can step away from the medical, even though it's there. I am able to do easy hiking trails, and get myself stronger. Everything I need is there such as hospitals, restaurants, stores, etc. I'm not a big city person so this is perfect for me. It's a great feeling when you can live your life more because you don't hurt as bad. 

October 3, 2016
It was an unexpected crazy morning. I woke up expecting to be able to relax after the drive out but instead found myself in an orthopedic clinic. In the middle of the night I heard a strange noise from my halo but I didn't think too much about it. In the morning my mom was on the phone with my dad when all of a sudden I said, "Uhhhh, MOM!!!! We need to go to the orthopedic clinic like, right now!! The bar to my halo just popped out! I'm not kidding." Needless to say, my mom's phone call with my dad ended immediately, and off to the clinic we went. I was brought back to a room right away. Initially they wanted me to see my surgeon. I said that wasn't a possibility because he's in Illinois. They couldn't turn me away. The spine physician's assistant went to the spine surgeon explaining the situation. He then had permission to put the bar back in place, and tighten everything. It was very good this happened to my brace after the full neck fusion vs. before. Had it happened before my craniocervical fusion at the end of August this could have been pretty bad.  

The area that is circled is the bar that dislodged from where it's supposed to be. The noise that I heard in the middle of the night was that bar moving. Thank God my neck was entirely hard fused at this point because it could have been a bad thing if it weren't. My mom, Daisy, and I went to the orthopedic clinic and they put the bar back in place. I'm telling ya, there's always some type of crazy medical thing happening. Fortunately, this one wasn't painful.

October 4-6, 2016

After all of the car travel, the following days were dedicated to recovering. I went for a walk or two every single day to strengthen my legs, and look at the yellow Aspen trees. For me, looking at the beauty around me is really good motivation. One day I hope to be able to hike up a mountain (there are easy trails). Besides the daily walks, I was catching up on much needed sleep in preparation for when physical therapy would begin. 

Finally physical therapy began. The plan was to work on strengthening my core, hips, legs, and the dreaded shoulders. The shoulder work didn't go well at all on my right side. My right scapula needed so much surgical work which couldn't be done until my halo was removed. I told my therapists' there is a very different pain that I have never experienced before, and I couldn't pinpoint what was wrong other than I think something is not attached. Despite all of the muscle tears, and instability we stuck with the isometric exercises to strengthen. When I wasn't exercising my right shoulder/scapula I was wearing the custom shoulder brace that was made for me when I was in Minnesota. That brace helped so much in supporting my arm. Between the halo brace, and the shoulder brace EVERYONE would stare wherever I went. 

At this point in life not a lot was happening. My time was spent in physical therapy, and recovering. I'm going to end this post with some pictures because it'll fast forward to when things were about to change for the worst. It didn't take long. 

Enjoy the photos of living my life the best I can given the circumstances!! 
If anybody who was, or is in a halo would like to connect, please email me at kingmeg19@gmail.com 

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October 9, 2016 one of our favorite State Parks to hike at...

 the views are amazing. 

October 23, 2016 beautiful day to go for a walk, and look at the lake and mountains.

October 26, 2016 Daisy made friends with the horses. She LOVED them. It was the first time she was around a horse, and she couldn't get enough of them. She wasn't scared of them at all. 

October 27, 2016 walking around the lake with Daisy. 

November 2, 2016 first hike around the lake with just my dad. It was a great memory. We had a lot of fun on that walk. 

November 4, 2016 my dad and I!

November 4, 2016 best parents!

November 13, 2016 at the horse park. The horses kept smelling my head, and my halo. 

November 14, 2016

This was the last day before things turned for the worse...

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

"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. 

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

Finding Hope Amidst Chaos

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

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

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

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

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

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

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

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

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

They were serious working on their birdhouses

She doesn't look comfortable, right? 

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

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

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

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

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

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

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

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


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

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

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

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

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

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