Wednesday, July 20, 2016

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. 
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
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. 

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. 
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