Thursday, February 23, 2017

Traveling Halo of Hope

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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As always, if you wish to communicate, you can email me at kingmeg19@gmail.com. To those that are shy to email me, I can tell you now, you most definitely are not the first. 
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Saturday, February 11, 2017

"Life is Better When You're Laughing"

June 25, 2016
It's my birthday! Honestly, I'm not a big birthday celebration person. Usually I dread them; more so since my initial injury because I am yet to accomplish the things I want too. Also, I had a great childhood that I miss. This birthday was different though. There was much to celebrate. I was alive all because a knowledgeable neurosurgeon listened, and stabilized my neck so it wouldn't move in ways it shouldn't due to the Ehlers-Danlos Syndrome (EDS). To celebrate we went out to dinner. My sister knows I hate attention, so she told our waitress it was my birthday and to do whatever she can to get all the people that were sitting on the patio by us involved. This led everyone singing me happy birthday...I was so embarrassed.
Post-embarrassment picture after everybody sang to me. The dessert was good; I like my sweets. One thing people might not know about the halo is that the pins can sometimes irritate the nerve that supply the eye muscles. This can cause the eye to droop down a little bit; this is why my left eye (R side of picture) is slightly drooping. 


June 30th, 2016
It was a warm summer day. Despite it being hot out it was important to me to go to the park with my nieces and my mom. As luck would have it, there were multiple kid's camps going on. This led to many stares. In this type of situation, you can't take it to heart. They're kids. Probably none of them have ever seen a halo before. So what do you do? You smile at them, and go about whatever you're doing. When the kids saw me playing with my nieces, I wasn't as scary looking and a couple came over to play, and some were inquisitive and asked questions. Use the halo as a learning experience for them. All you have to say is, "I hurt my neck, and this is a crazy looking brace to help my neck heal by keeping it from moving". After explaining, my nieces and I played bocce ball. Since I can't throw, I played by kicking the ball.


Once my nieces and I got tired of playing bocce ball, or should I say, the tops of my feet started becoming bruised from kicking the bocce ball, we decided to work on our balancing skills.
July 1, 2016
It was doctor day with my neurosurgeon, Dr. F. My appointment was to discuss my upcoming halo removal. We already had a tentative date of July 14, 2016. I did not want my halo removed; yes, I know, probably the only person in a halo that says this. There's a reason I didn't want it removed though. My neck felt good in the halo, and I was concerned my upper C spine was unstable from my skull-C2. The other reason I didn't want it removed was because my mom and I were heading back to Colorado so I could do some physical therapy, and my nieces were coming with. I wanted to feel good while we were there. Dr. F said it was okay to keep the halo on until I got back from Colorado, and that it was also a good thing because it would allow my C3-T2 fusion to heal more. The new halo removal date was set for August 25, 2016. 
Legitimately happy to have my halo time extended.
July 2, 2016
I was going on my first big outing since my halo application, and surgery in April. My family and I went to the zoo. It was so hot out, but it was worth it. I will say, my body was so sore the next day. The halo is 7-8 pounds. My legs and rest of me was so sore. It was still a fun day, and ended with a beautiful sunset. 
My niece Emily and I. We tease that a bull is my inner spirit animal because it has horns, and my halo has "horns". Emily is pretending to have them; hence the reason her fingers are sticking up by her head.
Neighborhood sunset

I very much believe this

July 4, 2016
Happy 4th of July in the U.S. Our tradition is to go watch the fireworks by the lake. It's typically crowded so my biggest concern, along with my family is that I would get bumped into once it was dark out. Fortunately, my family is creative, and having my nieces living with us meant we had glow sticks. We got to the lake early to get a seat and in the meantime my nieces decorated my halo in glow sticks. This worked out perfectly when it was dark because nobody bumped into me. 


My family and I

Never thought I would be decorated in glow sticks...in public. They did a good job though. It looks like I have headphones on. 
July 6, 2016
It was an exciting day. Since May I had been bringing my dog Daisy to become certified as therapy dog so we could volunteer and bring a little happiness to people. Her trainer said she also qualifies as a service dog for my needs. Daisy has been around my medical since she was a puppy. On July 6th she passed her test and graduated. There is a lot that I can't do, and there is a lot I want to do. I want nothing more than to help people. If that means bringing Daisy to the nursing home, or hospital etc. then it's a good thing. I've always wanted to work in the medical field; orthopedics specifically. Since I don't see that happening at this point in life, for now I'll try to help in other ways. 
Congratulations Miss. Daisy. You're official!!
https://uk.pinterest.com/pin/442126888400908616/
July 14, 2016
It was 3 days before my mom, nieces, and I would start the drive to Colorado. My nieces have never driven cross-country before like this so my mom and I were excited to show them. We took them out to lunch to talk about the drive, and we made a list so they could double check that they had all the things they'd need. 
Emily and I
I want people who are in any kind of brace to know that they can still help other people. You might have to dig deep to overcome your fears, or whatever it is that makes you self conscious, but you can do it. In doing so, you can potentially help a lot of people. 

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As always, if you wish to communicate you can email me at kingmeg19@gmail.com To those that are shy to email me, I can tell you now, you are not the first!
If you have a Faceook account, you can search and "LIKE" my page, Meg's Shoulder & Scapular Journey for current updates.  

Wednesday, October 26, 2016

Finding Hope Amidst Chaos

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 5th...day 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 right...fun 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!!!


Please follow me on Google +
As always, if you wish to communicate you can email me at kingmeg19@gmail.com To those that are shy to email me, I can tell you now, you are not the first!
If you have a Faceook account, you can search and "LIKE" my page, Meg's Shoulder & Scapular Journey for current updates.