Wednesday, October 26, 2016

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 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 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 To those that are shy to email me, I can tell you now, you are not the first!

Tuesday, September 13, 2016

First Sign of Trouble

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.

How life is ironic: 
It's ironic for me writing this post because it coincides exactly with where my life has been the past 2+ weeks. It's really weird writing it because it's like foreshadowing. Every concern that I had at the end of May was just confirmed exactly 18 days ago. So now you're probably wondering what happened at the end of May? I've been holding off on writing this post because I didn't know how everything was going to play out. I wasn't emotionally ready. In order for me to write these posts, I have to come to terms with everything and know the end result. Now that I know what happened, I can let you know what happened at the end of May. 

Once I returned back home from Minnesota on May 16th from seeing Dr. E I slept a lot the next several days. There really isn't anything worth writing about. It would be like me writing about how paint dries on a wall; nobody wants to read about that. Why? IT'S BORING! 

May 22, 2016

I was doing a bit better this day. My mom and I went to the nursing home to go have lunch and visit my grandpa. It was a nice day outside so we were able to have ourselves a nice little pinic on the patio. We started bringing this little portable radio that syncs to my phone and we play my grandpa's favorite types of music: Big Band, Judy Garland, Doris Day, Connie Francis, Frank Sinatra, Dean Martin...the list goes on. My grandpa isn't as conversational as he used to be so music is nice because it fills in the silence.

My grandpa and I having our picnic
May 26, 2016

It was a big day. It was the day that my custom cervicothoracic brace was getting made aka custom CTO brace. This is the brace that I'll go into once the halo brace is removed from my head.

Before heading to my appointment I had my mom help clean my torso. Apparently my dog Daisy felt it was necessary to help out too...or stand guard.
Daisy keeping watch over me
One thing I have mentioned before is that when your arms suck and you can't pull/push off with them then you end up substituting with other body parts. For me, that would be my feet. On this particular day the tops of my feet were hurting me quite a bit. When I looked at the tops of them I knew why. They were all bruised from hooking my feet on whatever things I could to pull myself up.

Now that I was clean and ready to go, my mom brought me to the orthotics building to have my new brace made. I had no idea what to expect. I had never had a brace like this made before so I had no clue what it would be like. I do know now it's like being made into a human mummy. Pictures explain better than words do so I put together a few collages to explain what's going on in each picture.
Top left: front of halo was removed to mold my front torso
Top right: plastic was put over my clothes and a cloth over my face
Bottom left: cloth being cut to shape how the plaster will mold my face
Bottom right: final look with the mom kept teasing how I look like a nun from The Sound of Music

Top left: hard plaster being applied to my chest, chin, & jaw
Bottom left: plaster hardening. You're not allowed to move any muscles in your face while this is happening.
Right side: Ab workout galore. Between the weight of the halo, the plaster, my body and not being able to use my arms, I'd say I got part of my workout in for the day.
Left side: back side of plaster hardening. This was applied after the back portion of my halo was removed
Right side: this is when I immediately knew there was a PROBLEM! As soon as the back portion of my halo was removed, I couldn't hold myself up and started leaning forward. As this happened, I felt my skull, bones C1 & C2 slide forward. I had no way to verbally say anything because I wasn't allowed to talk since the plaster was hardening. Horror was going through my head and I felt myself starting to panic. The best I could do was gesture with my arms to get pillows between me and the chair to try to hold me back. It was really scary because my head shouldn't have been able to move since the front portion of the halo brace was still on me. So why did it?

This is the finished product of the custom cervicothoracic brace aka custom CTO brace. We picked it up about 10 days later.

Once the halo was secured back on my head I felt terrible. I felt like my head was like a chicken pecking with its head forward. I knew my skull and top two bones weren't in proper alignment. I didn't tell the orthotics guy because I needed my neurosurgeon to correct this problem. After my mom and I had left the building to go into our car, I leaned forward and felt this painful loud pop at the base of my skull specifically on the left side. I immediately started crying and saying over and over again my upper cervical spine is unstable and needs to be fused. I was horrified.

The next couple days I felt horrible. It hurt to be upright. It hurt to lay flat. It hurt to walk. It hurt to sit. The only way I was  semi-comfortable was if I was in a reclined back position. Next thing I knew, on Sunday May 29, 2016 I had sporadic shaking down my right leg like I had in Fall 2015. Immediately red flags started going off in my head because my physical therapist(s) always thought there was a problem in my upper cervical spine. Later that evening I emailed my neurosurgeon Dr. F about what I felt and symptoms I was experiencing. He wrote back saying he would have the nurse schedule an appointment for a halo readjustment, but on my movement fluoroscopy (like a movement x-ray) in Feb. my upper cervical spine looked okay. I emailed Dr. F simply stating something moved forward.

June 1, 2016
It was the day of my appointment with Dr. F to have my halo readjusted and the day started off horrible. I woke up on my R shoulder with burning nerve pain and my R scapula, shoulder joint, and clavicle (collar bone) were all dropped forward. I was in so much pain.

Not a good way to start the morning. The halo is supposed to hold my back up straight but because my R shoulder girdle was all dropped forward I was stuck in this weird, painful position.

On the way to the hospital I emailed my shoulder surgeon, Dr. E, what was going on in the event the hospital wasn't able to get my shoulder back in place. He was in surgery all day but said to have him paged in case I run into a problem. It was reassuring knowing there was help if need be.

Once we got to the hospital, I was brought back to an exam room. The resident walked into the room with eyes like Bugs Bunny and asked how long my head has been in this position. I told him one week. He then said, "One day?" and I said, "No, one week." He immediately got up from the chair to go grab Dr. F.

When Dr. F walked in, first thing he noticed was my shoulder. I told him don't worry about it because it happens all the time, please just fix my head. Dr. F had me sit in the chair. He had the resident hold my head while he loosened the bars with the wrench that sends shivers down your spine due to the noise. Once the bars were loosened Dr. F grabbed the bar over the top of my head and literally slid my skull back into place. My mom was in the appointment with me and she has never seen a skull move like that before. Dr. F then continued to adjust the bars to find a good skull/neck position but I kept getting a coughing reflex and a lump in the throat sensation. It wasn't until I said, "More traction to my head!" that I felt better.

Dr. F then said I had to go to the emergency room even though I said,  "It's fine I'll deal with it at home he." He said he had already called down to the ER so I had to go. While in the ER lobby I overheard one of the staff members say that I'll be in bed 3. I could see bed 3 from where I was sitting so I told my parents I will walk. As soon as I started walking there was shaking down my R leg again.
When I got to my room I immediately told my nurse I'm here for my shoulder but there is a problem with my R leg. My shoulder was looked at first because that's why I was sent initially. Surprise, surprise, my shoulder history was too complex and nobody would touch me. The ER doctor asked me what I needed to get things back into place and I told him IV Valium. After a lot of that, my muscles finally started to calm down enough so my arm was back by my side.
Uncomfortable would be an understatement

This is what we call improvement; arm is at least closer to my side

Now that my arm was relatively by my side, my leg could be looked at. Neurosurgery was sent down but there was nothing that could be done for it. Like past times, it was something that just had to run its course. The theory is that when my head was readjusted, swelling occurred putting pressure on my spinal cord, or there was a stretch on my spinal cord that occurred. Either way, it irritated the nerves that control walking to my R leg.

Here is a video of what the walking looked like:

The gut feeling that I had that there was trouble on this day at the ER...I was 100% right. I just had surgery again 2 weeks ago. Just goes to go show you, YOU know your body best. Since I'm only 2 weeks post-op it's harder for me keep up with my blog regularly. * *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey 
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The more awareness about EDS, shoulder/scapular injuries, craniocervical, and cervical spine instability the better!! As always if you wish to communicate you can email me at

Sunday, August 14, 2016

One Month Post Neck Fusion

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.

May 12, 2016
It wasn't exactly the way I had envisioned the way things would be one month out from my multilevel posterior cervical fusion from C3-T2. My mom and I were actually on our way to Minnesota because I had an appointment with Dr. E the following day to evaluate my left scapula. The drive seemed exceptionally longer than normal but fortunately we made it there safely which is all we really care about.

One of the positives of this trip to Minnesota was that I was going to get to meet up with some friends I hadn't seen in several months. One of the friends I met was doing physical therapy in Colorado the same time I was. She and I had the same physical therapist. About mid April she told me she had an appointment with Dr. E on May 13th. I sent Dr. E an email asking if it was possible if I could come in that day because I would be a month out from the neck fusion, I needed to know what was going on with my scapula, and it would be nice to meet up with my friend. Dr. E was nice enough to let me come in on that day.

May 13, 2016
The morning started off with me not in the greatest of moods. My neck and my left shoulder blade were hurting really bad from the drive up, and the anticipation of my appointment was making me feel sick. The good thing though, is Dr. E is ALWAYS a pleasure to see and can pretty much always make you smile even when you're not in the greatest of moods. One thing to know about me, is that when I am nervous I pace the hotel room back and forth which drives my mom absolutely nuts. She oftentimes says, "Do you have to pace so much?" and I always say, "Actually I do."

To get the pacing to stop, my mom suggested I get ready and we go downstairs to the lobby to grab some breakfast before going to my appointment. Getting ready was difficult because I didn't feel good. After I was dressed and ready to go, I reluctantly agreed to go to the lobby because I didn't want to be seen in the halo (sometimes the lobby is really crowded in the mornings at this hotel).  

Fortunately the lobby wasn't crowded. When we walked in, there was a lady that looked at me and said, "Hi, are you Megan?" I turned to my mom because I had absolutely no idea who she was and then looked at her and said, "Yes..." Shortly thereafter my mom and I found out that she was traveling with my friend and my friend told her I was in a halo brace. I suppose that could be another good things about being in a halo depending on how you look at it. The chances of at least two halo people being in the same room is slim to none, which in turn makes you very easy to spot. At the same time, everyone noticing you when you walking into a room is horrible when you don't like attention.  

This is who I met in CO. After we took this picture, I texted it to our physical therapist saying, "Your CO patients say hello from MN!"
The time had come where it was time for me to meet with Dr. E. As always, he walked in and gave me a hug, only this time I told him to be careful so he doesn't poke an eye out on my halo. He helped me get the brace off of my arm and get my sweater off. He commented on how he really likes the arm braces that were made for me to help support my arms. It was difficult for him to evaluate my scapula because the halo vest covers my upper back, but even with that, he could see that my scapula wasn't sitting properly and he confirmed my suspicions. When my trapezius muscle was detached, and then reattached to my neck to do the fusion, it pulled on the scapular repair from surgery in January 2015.

To those that are new to reading my medical journey, I've had a lot of surgery on both of my shoulder joints & shoulder blades. On January 28, 2015 for the first time ever, I had a new procedure done where they took an Achilles tendon allograft, and attached it to the bottom of my scapula and then to my thoracic spine. I also had 4 of my muscles that detached from my scapula reattached; levator scapulae, rhomboid major, rhomboid minor, and my lower trapezius. I would put up my amazing & gory pictures of this surgery but they're too graphic compared to other surgeries I've had done. It would probably gross out too many people.
We're not completely sure if my trapezius muscle detached completely, or if it's really stretched out, but either way, the change in tension messed up with the dynamics around the scapula causing it to become unstable once again. At this point Dr. E told me that he will have to take another allograft (cadaver) tendon and secure it to my scapula and then to my spine to stabilize it. I asked if he would be able to do surgery on my left shoulder joint at the same time but unfortunately the bracing is different and the complication risks increase. He mentioned he could potentially pin my shoulder joint in a neutral position and we can see/hope it will stabilize itself by getting stiff, but doing both procedures together is an absolute no. After hearing this information, I started to cry because I was so overwhelmed. I told Dr. E I wasn't mad at him; I was just really frustrated at the circumstances. When I signed the consent form to have my neck fused I never considered that it would interfere with my scapular surgery. Dr. E grabbed the Kleenex, and told me not to cry because we will figure everything out and hugged me again. If there's one thing Dr. E doesn't like, it is seeing his patients cry. 
The circled area is where I felt things
stretch out or tear after the neck fusion.
After my mom and I left the hospital we went back to the hotel and I tried to rest for a little while. The best way to describe how I felt was just utter exhaustion; both physically and mentally. Fortunately later that day we were able to have a good "pick me up". My mom and I went with our friends to see a movie in the early afternoon, and then later that evening we went to dinner. As always, with all of the consuming medical nonsense, my family and I try really hard to offset it by making sure to have some non medical fun. Meeting up with our friends was a great way to do this.
May 14, 2016
My mom and were going to go to our other friends' house. We met them at the same hotel last fall and had one of those instant connections. In reality, we've only known them for about a year but it feels like we have known each other for a lot longer than that. They too, are an awesome mother/daughter team. We each have different medical issues but at the end of the day, there are a lot of crossover similarities with the struggles we deal with.  Both the mom's get each other, and so do we as the patients. We all have a very good understanding of one another, and the struggles that come along with chronic medical issues. It's not every day that you meet someone that "gets you". When you do find those people, you cherish them because you feel less alone.
Our mother/daughter duo friends.

As always, if you have EDS, are in a halo brace, and want to communicate, you can email me at

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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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Monday, June 27, 2016

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.
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 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 

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