Spinal Fusion | 20 Years Later

Hello!

In the last several years a lot has happened, I celebrated 10 years as a blogger in 2019, I hit two milestones in last year, starting with my blog turning 10 in October and I entered my “dirty thirties” a month later. For this year, there is a very different anniversary, and I’ve felt weird about it for months. I actually decided to allow myself to write about my thoughts months in advance because I couldn’t get it out of my mind of how it’s been this long since it happened, so I hope you enjoy taking a trip down memory lane today.

I was technically born with three conditions, as you may know I have Arthrogryposis Multiplex Congentia, but this can lead to other problems like babies born with club feet. scoliosis, etc. I happen to have a serve case of AMC with the addition of a club foot, rocker bottom, and scoliosis. I’ve had many, many physical therapies over the years, in the hopes of trying to help make life a little easier. I’ve had discussions about what could be done as far as surgeries go to “fix” my arms and feet, but the only I ever had been the full spinal fusion surgeries in 2002.

Photo by cottonbro on Pexels.com

What is spinal fusion?

Spinal fusion surgery is usually the last option, if your back cannot be corrected after wearing braces for multiple years. The National Spine Health Foundations says, it is like trying to fix a broken bone(s), which is a great way on how to explain it, especially in my experience. What does one do in the hopes of repairing a deformed bone? You have two options: use a splint or form a brace/cast and hope time will heal all wounds… Nice pun action there, right?

I wasn’t a stranger to braces; we still have the itty-bitty braces doctors gave us for my hands. When I came out of the womb, my arms weren’t set in the position at my chest. According to my mother, they were somewhat flat, and the doctors tried to adjust them twice. The first was when I was in incubator, (I was a preemie, so I needed a little help breathing and then of course figuring what was going on with my body.) and the nurses made a makeshift log by folding a single wash cloth and propped me on top of it so my arms would stretched out and eventually my parents were given the braces for my forearms and they a little smaller compared to a standard remote for your TV!

Anyways, I was about five or six years when I was put into the first brace I actually remember. I don’t exactly remember the appointment itself but It had many crooks and crannies, plus it was very decorated with stickers, thanks to my fellow classmates adding a bit of fun to the whole thing! I wore it until the end of third grade and just before I turned 10, I was fitted with a brand-new brace and it was very bulky, this was as close to a corset as I could get, and thankfully I only had to wear it for less than a year because it wasn’t doing very much to help me at this point.

I remember the night before we drove up to Shriner’s Hospital in St. Louis, my mom had my sister and I and we prayed together if it was decided by the doctors I would have surgery, I remembered our expressions being of fear and shock, I mean we were kids, despite the fact we’d go over there multiple times a year since I was about two years old, somehow I hadn’t heard that word “surgery” before, so it was no wonder why I can remember that scene so well because it was a new thing to me, and I didn’t fully understand that whole process until much later in life.

The actual appointment is still hilarious to me because after getting X-Rays done five minutes earlier, the four of us were called next and put into the standard size room with a very used chalk board and different toys attached to the wall next to the giant mirror. Our parents were wrecked with nerves, Blondie was playing, and I was on the cold floor slowly peeking out into the hallway, watching everybody walk around, which is something I still do at age 30, but I noticed there were a lot of doctors looking at a set of X-Rays and I saw my doctor among them. I knew at that moment they were inspecting my images and as I was told to scoot back in the room, I didn’t feel scared but curious of the language they were discussing–I knew something big was coming and it fascinated me!

As I made my way back over to my folks, they suspected the doctor would be coming soon, so one of them lifted me onto that damn bed thingy and I sat there for a short time before they came into the room. How do you know you’re going to have surgery? Well, in my case, about 7 doctors walked right in and they were the same 7 people busy talking in low tones about the process of my spine. There were tears and I cracked a couple of jokes, because that’s how I roll in life. The day we went up there for this appointment had to been in mid-April 2002, because by the start of August, and what would be the beginning of my 5th grade school year, we made another trip which would be even longer as I was now an inpatient on the second, B floor with a roommate by the name of Shelby.

My mom and I tend to argue about the exact date we went up and stayed at the hotel and eventually moved into the hospital to stay. The first night in that hospital was another hilarious experience! I couldn’t get to sleep, because the next day would start on my three-and-half-month journey. We got yelled at by one of the night nurses that the TV wasn’t allowed on at night. This is definitely something you don’t tell a new patient, but we followed the rules, and after my mom went to bed, I decided to play with the controls of my bed, and I had that thing folded up like a taco! I think my mom woke up in the middle of my fun and told me off, because I don’t remember much after that!

The next day, Dr. Lawrence Lenke only came to the hospital on Tuesdays and Thursdays as he spent the majority of the time at the Children’s Hospital a few miles into the city, where I would end going for the second and third surgeries. The first was a smaller one but the one we can somewhat pinpoint the easiest, which is why I tend to celebrate them on this one date, as supposed to the day we left in early November. This surgery was just as important as the doctor and his nurses and techs fitted a half halo made of metal onto my skull. I had eight pins screwed into sections to keep it secured and I was attached to a pole in both my bed and wheelchair to keep myself alignment. I ended up having three surgeries altogether, but I wouldn’t have the actual spinal fusion surgery six days after my 11th birthday.

Over the years, I’ve finally figured out the timeline of everything that happened, both while I was in surgery and recovery, and what was going on at home and school too. My mom and I were separated from our support systems. My dad stayed home to work and stay with my younger sister, she actually doesn’t have a lot of memories of that time, whereas I remember almost everything. I had tons of distractions between school, friends that stayed in our section, the goofy nurses and field trips. I went on more field trips in three months than I did in one year!

A little after I had my first surgery, I got to meet some of St. Louis Cardinal baseball players. My dad was very excited, he thoroughly enjoyed this! I think this and the time a group of motorcyclists came to visit us and brought us goodies. Anyways, I’m not into baseball so I sort of felt silly meeting these guys, but the Cardinals team is a big supporter of Shriner’s Hospital, and visit the kids, and sometimes a group of kids, nurses and people in the RT (recreational therapy) go to watch a game and meet the entire team(s) and I am thrilled they do this. We met with a great bunch of guys, and it was really fun, but I highly doubt Woody Williams still has my autograph but hey you never know! He was very curious of my ability to write with my feet, so we did a trade, he signed my shirt, and I gave him my autograph.

From L to R we have Timo Martinez, Andy Benes (he retired later in the 2002 season!), Mike DiFelice and Woody Williams. Notice the metal halo on the top of my head, and the pole behind my wheelchair. Photo credit: Dona Glambert aka my nana!

It is absolutely crazy that it’s been over 20 years since I had my first surgery, the other two anniversaries will be at the end of October and first week of November.

I could sit here and tell you all of the things that happened, but it would be even longer than it is now, so I am going to stop here for now. If you would like to ask any question about my experiences; while I was staying at Shriner’s, recovering, or anything else, you can email me at gotmeghan.blog@gmail.com Be sure to get the dot in between “gotmeghan” and “blog” before you send your messages! I’d also like to say if you know someone who was a nurse at that hospital, worked in the B section, and remembers anything about the girl who drove her wheelchair with her feet, I’d also like to get in touch with you/them too!

Have you ever had surgery before? What was the location and reason why you needed to have it in the first place? Leave your answers below!

snowflake

New Do!!

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Howdy!

When I was younger I had REALLY long hair, like I used to scoot on the floor and whenever I’d back up and I would pull on my own hair! At the time, I loved it and so did everybody else. I might be going out on a limb here and saying I only kept it was because of the compliments I’d get from the people I was around, whether it was teachers or family members, everybody was in love with my hair! And apparently I liked the attention…

In 2002, we were told that I was going to have my back surgeries to correct my scoliosis, but first I would need to have a metal halo put on me. They would screw this metallic half circular thing onto my head and eventually they’d take it off during the last hours of the third. The day we got it cut off was a spur of the moment kind of thing. We were shopping somewhere and we talked them into just braiding it one last time before doing it at a certain point. We actually cut it pretty short, I think I came home with a bob, that’s how short we got it.

I was crying the whole time!

I absolutely hated my hair that short! Honestly, I’ve never liked my hair short. I think I just kept trimming it that way because it was the easy way to take care of it. You don’t have to wash it as many times as with having long hair, despite the fact you can’t have a long braid down your back, everything about it is better.

So why the hell did I decide to grow it out again?

I don’t know, I really don’t. Maybe a part of me missed it. I mean, let’s be honest I was like the brunette Rapunzel here!

When I went to the Five Finger Death Punch concert with my friend Brittany in May 2016, I loved my hair at that length. I looked like myself and most important I thought I looked beautiful. I didn’t look like a boy, nor did I feel like it was too much to have hang down. I figured it was my comfort zone since I’m not a big fan of  spike-y hair on me. I know, shocker! I’ve had my hair spiked too many times during my teenage years that once I turned 21, I no longer wanted it like that anymore.

When Blondie and Brandon picked a date for their wedding, I told everybody that I’d get my hair cut in August. I wanted to give myself one last braid before I went and cut it all off again. One thing I didn’t count on was since I’ve been out of school, I’m not really around a lot of people and I honestly don’t post a lot of pictures of myself online anymore so when everybody saw the length of my hair, friends, family and everybody else was an awe of how long it was and it did make me feel good, but when you are in so much pain in your neck because of the weight your hair was giving off, you know it all needs to come down soon!

Since I went to the nursing home while mom was busy recovering at the hospital, she asked if I wanted to have the salon lady Debi cut it for me. Truth be told, I was actually going to suggest the same thing but figured I’d be told no. So, two days after being there, I woke up that Thursday morning a bit giddy as I knew I was going to get it done one way or another. I already had a plan of how much I was removing but I don’t think Debi or my nana were expecting so much, and since she was a bit hesitant beforehand I started to second guess myself a bit but we ultimately agreed on the same length and if I wanted it shorter then we can go shorter.

We went to the edge of my neck. So it isn’t necessarily a bob or shoulder length either. However, since my neck does drip over into the right side it is longer than the other but that can’t be fixed by her. That’s just my anatomy! She did cut my bangs, but I think I probably should have left them alone or just trimmed them so far and then stopped. One thing that I didn’t think through was that I got it done before lunch so I didn’t know of the troubles I was to have while eating my meal an hour afterwards. The way I eat is that I bend over and reach with my tongue and month and everytime I tried to take a bite my whole left side of my hair kept going into my plate. It’s not fun to eat your own hair. We ended up having one of the CNAs put half of my hair up to hopefully make eating better for me! It worked, but now that I’m home I use a headband.

One funny thing I wanted to share before I end this post was the fact that my dad was the last one to know I got my hair cut. Since mom and nana knew about it from the beginning and Debi had tagged a picture of it with nana in the background to my mom on Facebook so she saw it while at the hospital. Blondie and Brandon only knew about it because I went to stay with them the following weekend. So dad was literally the last to know about it and his reaction was priceless! He was actually speechless, later he did find the words to say that he liked it. So far he hasn’t said anything about the bangs but they’ll grow out!

Here is a before and after into seeing how much hair I actually got rid of last month! There are a few people I’ve talked to, that have said I can still get my hair braided, it just might be only french braid or dutch braid maybe. Right now I’m going to relish in not having it up in a ponytail all the time for the time being!

Have you ever cut your hair so short that you actually regretted it? What is your comfortable length? Short, medium, or long?

snowflake

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Life Lately | Where Was I?

Howdy folks!

I’m back to blogging again! I don’t really know if taking a week off is always the best thing for me, because I never truly stop writing posts. I think I make the decisions so I won’t rush into anything and schedule it just so I have something going up that day of the week.

I haven’t done a Life Lately post in so long and it’s a little weird that I got out of habit of doing those types of posts every other month because they were so therapeutic to write, but I’ve been dealing with some really personal things lately and I didn’t think they were appropriate to put up on here. I’ve told some of my online friends about what’s been going on, but they’ve always made it a safe environment for me to come clean–not saying you guys don’t or anything–so that’s the reason why I’ve been so hush-hush about everything.

I’m only going to say that my mom has had two surgeries. One was on her the right side of her neck back in June, a few weeks before Blondie and Brandon’s wedding. And recently she had her second surgery, this time it was bigger and on her stomach. Considering it took me about 12 years to be able to tell everyone the details surrounding my back surgeries, you might have to wait a while so I can get all of the information straight because I feel I have left out quite a bit of details by discussing it with friends, so I apologize if you were wanting a little more, that’s all I’m ready to say for the time being.

While my mom recovered in the hospital for the first surgery for about a day, I spent two days with my sister and brother-in-law. We made mom and dad cupcakes and Brandon and I watched two of the Christian Bale Batman films. The second surgery was a lot bigger compared to the last, so we had to find another place for me to go, because Blondie started her new job back in August, she couldn’t take a full week (or two weeks as it became later) off or Brandon for that matter.

So where was I?

I was at my mom’s work. The same place where my nana now lives. What is surprising though, is that it was my suggestion because we were literally running out of options. I remembered when she told me about a resident at her last job that stayed there every other month to give their parents a little bit of a break. My mom and I were talking one evening and I just brought it up in the middle of our conversation. I think she was more shocked than anything else that I had suggested it. Mom and dad had discussed it amongst themselves but wanted to leave it as a last resort.

So I was supposed to stay there for three days before spending the weekend with Blondie and Brandon. I was a little scared at first, because this is a BIG thing for me! I mean, I’m in my mid-20s spending time at a nursing home while my parents stay in a hospital, but I knew that I was in a place where I was watched by both professionals and my grandmother and I would be fine.

The following Tuesday, I was supposed to go home but poor dad ended up getting sick and we think it was all of the stress of mom having surgery, taking her home and then me coming home on top of that, that everything just kind of came at him all once and his body reacted in the only way it knows how basically, so I stayed there for four more extra days and I really enjoyed it. Mom had told everybody not to spoil me, but that didn’t necessarily work out well for her!

I played Bingo three times and experienced a very adorable theme dinner, called Serenade At The Seven Seas and our tables in the dining rooms were decorated with blue feathered vases (which nana and I helped put together, while listening to Josh Groban) and fish nets and life rafts all around the walls. I ate a lot of food that I don’t necessarily eat at home like Seafood Bisque and Duke Wellington (it was my favorite!) and as our desserts, we had Creme Brule, but I didn’t really like it, because I forgot it is made of custard! I had to explain to nana how it was made and then I realized how much knowledge I’ve been gaining watching all of those food shows on TV!

I had a lot of fun with nana and all of her friends on the hall she lives on. They were all very sweet ladies, not at all what you’re expecting these elderly women are supposed to be, however I will say not everyone is all sunshine and roses, but is anyone really? I really enjoyed being in everyone’s company and seeing both Uncle David, who surprised both of us! I was busy reading by the couch and I saw him walking and I raised my head to smile like I’ve been doing but when people came into that area, after he walked by I went to put my head down, my brain went, “wait…” and as that moment passed he was already over to nana, who was also busy reading the newspaper that I realized it was David. We went outside and got some pictures by his semi and he ate lunch with us! It was a nice visit. And then later, I had my own visitor. My dad’s cousin Amanda came to see me, and brought me a slushie from McDonald’s. She didn’t stay as long but it was nice to see her too!

So yeah, now I’m at home trying to figure what all I’m going to write up for the rest of November! I hoped you enjoyed this little update and I wanted to thank the ones who sent my mom positive thoughts and prayers during both surgeries! And thank you to the ones who allowed me to just vent in between both times too!

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I Already Have Unique Tattoos & Piercings.

During my senior year of high school, I was in the mood to get my first ever tattoo. I was looking at everybody else’s and was just envious, but when different family members were getting their tattoos and piercings I was very scared and nervous of the pain. I have been through different types of pain, but I didn’t know how my body would react to them. I can say I can deal with medium size pain, but any girl will tell you during your time of the month, that pain needs to be under control or it’s unbearable to get through. It’s been five years since the first thoughts of wanting one of each has come to me. After my trouble with my earrings my family doesn’t make fun of me anymore of getting anything that has to do with pain. On occasions I do change my mind and want one, but on good days I think of something that’s very different from just your normal tattoo and piercings. To get through this, we have to go back to a time where my body was inserted with something new and sewed back together afterwards.

On Monday, I went to my nana’s to eat, visit, and clean part of her office space. It ended up being her cleaning most of it instead. All I did was put her CD cases back into a part and that was basically it for me. In the mist of cleaning, she found the mother load of pictures, including some interesting ones of me and my old high school crushes. I’ll save you the misery of hearing about that part but there were some pictures she found that I actually remember somebody taking. It couldn’t have been a couple of months after I had my back surgeries. We were living with my grandparents at that time and my immune system was out of sorts! I was probably just starting to move around a lot better at this point but hurting and certain parts were very sensitive! When you have any type of scars, if you have a lot of bones around that scar, everything in that area is so touchy. Like a simple back rub was literally the worst thing I could have gotten from a kind person! It was awful! What was worse though, that everything in my back was in pain. Everything was just trying to heal I know but between the middle of both scars itching like crazy and my ribs were giving me trouble, they were sore and it was mostly the other untouched side that was giving me the most trouble!

 I’ve been thinking about it over the years, in a way I don’t need a tattoo or a piercing. I have both already! They’re both unique and will (hopefully) be permanent and so I think it’s kind of strange that I’ve always wanted one but to realize I’ve kind of have them and think about a pin on my Bucket List pinterest board, tattoo all of my scars. My piercings are on my spine. I had three surgeries, one to have the metal halo screwed into my head, side surgery to take out one of my ribs and cartilage in between my spine and of course, making my back straighter by using a titanium rod and metal screws in my hips. We all have outlooks of different things and it might be my fear of adding another level of pain onto my body, but I kind of think I figured out how to love my surgery scars. For a normal person, your scars from a surgery are ugly to you and people always ask you about them, right? Well, mine are in places that are easily disguised and I still like showing them off. Funny thing is, I always have! People’s reactions are almost about the same as when they see my artwork. They can’t believe how I could get through it but I did. Both scars are huge. My side scar goes up from around my right shoulder and curves downward to the side of my hip. It’s bit hard to explain. The back scar is straight down from the top of my back down to my tailbone. Don’t believe me, well here’s your proof. Don’t believe the trend of covering up your scars with ink. Let them shine and you’ll learn to love them and maybe yourself for your imperfections!

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Lessons Learned

Thanks to a mini conversation with my friend Becky on Twitter, we are talking about different perspectives. It actually started off talking about weather, and then I suggested we trade lives and that’s how the conversation started. I told her after a day in my shoes, her perspective will probably change. Then we got on the subject about how I’ve always thought that if I was ever taught to walk on my own (which will never happen) that I’d fall and break something and I’d never be able to walk again. Sadly, I had members of family keeping this thought inside my head and has never really left. I’d like to walk on my own, but with my own feet. The ones I have now. I had an option of having surgeries on my feet years ago, but it was ALWAYS my desicion, which was nice since I was so young and I never wanted them changed even thinking of everybody else and seeing them walk, run, and other things.

The reason why I kept my feet the way they are is simple. If I had surgery on my feet I’d probably loose my abilities with my feet. Meaning, the writing, drawing, driving, and everything I know how to do now. So that actually was my real reason to keep my feet. As much as I hate learning new things to do with them. They do let me do things and I don’t always have to ask people to do the things I do on a daily basis. I don’t regret not having the surgery or surgeries. After I had my back surgeries, I went back to walking with the walker and found it a waste of time because I realized I wasn’t really walking. I was sitting in a machine that had wheels and was just uncomfortable and rough on my feet. I couldn’t use it on carpet and couldn’t wear shoes or socks because I couldn’t get enough strength to go forward. It was always weird, and for some reason I always thought I’d be taller if I walked. I was wrong, It was a real wake up call for me.

That was step one in the right direction. I learned how wanting to be like everybody else was a waste of my time. Because I wasn’t even close to be like them in a million years. Middle school was rough enough and learning that probably didn’t make things better. In high school, it slowly got better. I wanted to hang out with everyone. That was my next goal and I was determained to NOT let myself down from that one and actually succeed at that one, but it didn’t happen until Junior year. The week before my 18th birthday. I hung out with my friends without my mom or sister watching out for me. It was weird, but nice. Now I don’t even have the same friends I had back then. It’s a blessing in a disguese. Instead of them making me happy, I have new friends and I’m quite happy at where I’m at right now. They’re all lessons learned. (: