Thursday, February 23, 2017

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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  1. I like your last point. There's a lot of growth, self-awareness, empathy, & increased understanding that comes with living with anything debilitating for a long time.

    I think there would have been a time in my life where I also would have been unable to imagine pain that could stop you living life. I had plenty of sports injuries growing up & always 'powered through'.

    When I got Lyme, I pretty much fell off a cliff. It wasn't gradual, almost overnight I went from 20+ hours of exercise a week to hardly being able to walk. With that, it was more like my body had just turned to lead. For years now, if I catch up with someone I knew when I was younger, they'll say to me, "it's just so hard to imagine YOU not having any energy." And it honestly would have been impossible for me to imagine too... except I felt it. (And tried to fight it. And lost.)

    I had pain with Lyme, but nothing like the stuff I have going on with my shoulder. It was almost like learning that lesson over again, but with pain (& still overwhelming fatigue), instead of 'just' energy. Even still, it took a long time to accept I could be doing myself more harm by fighting the pain barrier instead of listening to my body & finding a balance. And even although I understand that now (& really, my body doesn't give me much choice 😕), I still feel I should be able to force myself to do more. It's so hard to accept.

    I think as well, so many people - with good intentions mostly - say things like "you need to try to get out more" .../do more/ have more interests/ be more active etc. It's so hard & frustrating when the pathetic amount you are doing already feels like you are pushing yourself to the max & people still say that. I suppose remembering what I (/you/anyone) once thought is the best way to try to understand their perspective. It's very true you truly don't understand something until you experience it yourself. I think you struck a chord there... something most people battle with, within themselves & with others, regularly. Admitting how your own perspective changes over time, and being able to look back on what you wrote then & what you think now is pretty powerful.

    Also, even although you (we, etc) accept that, and know we have limits we hate, you still show accepting it doesn't mean giving up (like lots of people seem to think) - because you ARE still doing stuff. But it's definitely about trying to find that elusive 'line' to balance things - & it just keeps moving!!

    1. There is SO much growth. I could have never imagined hurting like this. Back in 2008 when I thought pain wasn't a good reason to not participate in life, I was constantly having surgery. I'd give myself 3 weeks off and then be back in school. The pain didn't drastically escalate until the shoulder dislocation in Sept 2012 which started my neck spiraling out of control. That's when it has started and it has progressed since then. What we both would give to go back to life with less pain, fatigue etc.

      I would/still try to force my body to do more but it's an epic fail every time. It's not worth it anymore. Just need to recover.

      I had to acknowledge change in perspective with pain. Too bad it didn't change to less pain vs more 😐

      Keep plugging along. It's all we can do

  2. Hi Meg - I have shoulder/scapular/neck problems due to MDI. I have had 7 surgeries and have constant upper trapezius. I hope that you get to a point where you are stable and comfortable for awhile. Can you tell me where your pain is and what you take for meds? If you don't feel comfortable answering that is ok. I just would like to gauge how ehlers danlos is affecting you. I have EDS type 3. Godbless. Alison

    1. Hi Alison
      So sorry to hear you have shoulder/scap/neck issues too. Fun times, right? It's a horrible combo, and causes so many issues. Have your orthos tried botox in your trap to keep it from spasming so bad,.or muscle relaxants? My pain is worse through my neck, both shoulder joints, entire upper back due to surgeries I had in December; a ton of muscle work done. I'm having issues with my low back and R hip so I'm in the eval stage. I see a pain management doctor. I'm on medication to help with the nerve pain, a cream for the nerve pain, muscle relaxant for the crazy spasms, pain medication (that I'm not comfortable listing what kind), and an anti-Inflammatory. EDS has been affecting me a ton the past few years. Had to stop school and go on disability. The goal is to get back in school and work once I recover and rehab everything. Were your 7 surgeries on your shoulders? Have they helped? I've had a ton of shoulder/scapular surgery. They didn't help until my surgeon used allografts and knew eds. I didn't know I had eds when the surgeries started. Good luck to you with everything!
      Megan :)

    2. Hi Meg - thanks for the reply. My seven surgeries have been - c567 fusion, bilateral rib resection/scalenectomy (for facial pain and TOS symptoms) and then 3 shoulder tightening surgeries (for Multidirectional Instability) with the 7th coming up next week which will be a "soft tissue fusion" for my right shoulder as it is always subletting. As you know, every surgery seems to have a positive/negative effect on another part of the body. I, too, am on disability. I was a chiropractor in a former life and now I can't use my arms very well. Im also on the meds! I can empathize with you to a certain degree - only I believe you are suffering more than me. You have had terrible luck and I pray something good is coming your way! Thanks for the suggestion of botox - I never thought about that. Unfortunately, I live in Canada and our medical system for musculoskeletal problems is terrible. I have had all my surgeries in the USA - NY, St. Louis, and Greenville. Im glad that you have a pain management doc that can appreciate what the heck you have been thru. I hope that he can get you on a med regiment that works and good luck!! I keep checking for updates so fingers crossed...

    3. should read subluxing!!! autocorrect!