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. 

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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