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.