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.
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!|
|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.|
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.|
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?|
|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.|
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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