The Big 'D'

"Until we have met the monsters in ourselves, we keep trying to slay them in the outer world. As we find that we cannot. For all darkness in the world stems from darkness in the heart. And it is there that we must do our work."

It's about this time of night I struggle with my thoughts the most. The demons sneak into my brain and won't let me sleep. I've been a night creature for years now because of that. These past 2 years have honestly been the worst of my life. I have dealt with so many personal issues, among other things, and tried to be strong through it all but sometimes being strong isn't enough. This is something that is hard for me to say because strength was the only thing I had to rely on at times as a child growing up with a disability. It was everything to me. I stayed strong through the bullying, the mocking, the stares, the pity, the physical therapy, the leg braces that embarrassed me to all hell. I even got 'strength' tattooed on me as a reminder of everything it got me through and that I needed to continue to grasp onto that. Some people put their faith in a religion or a God. I put my faith in my ability to be strong for myself. So it's really hard for me to admit that the past two years, strength has not gotten me through life. 

I consider myself a happy, kind person (I hope others would say the same) and I try to emulate that in my everyday life so people can't see the darkness that clouds my brain. I have had my ups and downs over the past couple years, mostly downs, and I still fight those lows. I call the lows "funks". These funks could last a day, weeks, even months. It's this dark cloud that is constantly looming over you that you just can't seem to shake. 

I knew something was wrong when I had no will power to do anything. I didn't have the passion for school I did before, I wouldn't go out with my friends as much, didn't go to class, I never had an appetite, and I secluded myself greatly. I would lay in bed all day, every day and it didn't occur to me for a long time that something might be off. I finally decided to see a counselor and told her how I was feeling. She then asked how long I had been struggling with depression. DEPRESSION. The big D word. It had never occurred to me that I could be depressed. I'm a happy, optimistic individual and always have been. That word terrified me but it finally all made sense. A lot of things happened that caused me a lot of stress within a 3-month span. It was too much for me to handle and I feel like my brain shut off because it didn't know how to handle all the chaos and pressure that was occurring in my life. I kept it a secret from everyone because I mostly felt ashamed of myself. For someone who had been through so much in life to now not being able to handle it... It was devastating to me. 

Since then, it has been a crazy journey. In those 2 years I had neurosurgery, dealt with more pain than I could have ever imagined, improved greatly with rehab and felt really good about myself for the first time in years. And then I had a huge setback and more pain and that's kind of where I'm at right now. I've been in a lot of pain for the past 5 months and that certainly doesn't help with one's mental strength. I am constantly trying to work on my thoughts and feelings and trying to be hyper aware of what makes me feel better or worse. 

I am not writing this because I want anyone's pity. I am writing this because writing is a healthy outlet for me. It always has been. Poetry always seemed to help me when I was dealing with a lot growing up and writing my thoughts seems to help sort through the mess of a brain I have right now. 

I also want people to know they are not alone. Once I slowly started telling people about my experience, it not only made me feel so much better to get it off of my chest, but it made me realize how many other people deal with depression, anxiety, and other panic disorders. There are so many other people in the world who are dealing with the same bullshit that goes on in your head. It was refreshing to tell someone about it and have them tell me that they too are dealing with the same thing. 

I was embarrassed and felt alone for the longest time. I have finally reached the point in my life that I want to share my experience with people. I want others to know they are not alone and I don't want depression to be a taboo subject anymore. Depression is a mental illness that affects so many more people than most of us realize, almost 15 million people in America. It shouldn't be a subject that is swept under the rug or one we should feel embarrassed about. I was terrified to tell anyone and no one should have to feel that way.  If we are more open about the heavy, dark stuff that is going on in our heads, then maybe we can help more people and that's really all I want in life. 

Every day I strive to have that pure happiness about life that I once had. I haven't truly been happy for 2 years now but I am slowly making my way back there. One day and one challenge at a time. 

Thank you to all that have helped me through the light and the dark days. I hope I can help some of you too. 

XOXO,

B

Recovery Update

It has been over 7 months since I had my surgery. The recovery has been harder than I could have ever imagined. I was pain-free until I went back to working 2 jobs and back to school all within a month of each other. My body hates me for it now because I'm putting too much stress on it and the pain is back in full-force. I recently quit one of my jobs though so hopefully recovering can be number one on my priority list again and I am hoping the pain will gradually dissipate because I can't take much more of this.

The pain and struggle to recover lately has led me to reevaluate my life. I am passionate about physical therapy and helping children after they have had the same surgery I had, but if my pain never fully goes away and depending on how I recover, I may not be able to physically do that career for the rest of my life. It breaks my heart but I have to be realistic with myself and put my health/body first. I originally came to college to be a Child Life Specialist, a counselor who helps kids and their families deal with the struggles, hardships, and mental trauma that surgeries can cause. I can still help children who have been in the same situation as I am which is what is most important to me.

Otherwise the last 7 months have been quite the journey. I have learned so much about myself, who my best friends are, and I have also learned a lot about the general public. It's amusing how many stares I get from people because I am a young woman using 2 canes when generally the requirement to use canes is to be over 70 years old. I have also learned a lot about how ignorant people can be. My brother and I attended the Iowa game last weekend and on the way to the stadium a gentleman said "Hey look! That girl is a cripple." This is not okay. Cripple is my least favorite word in the English language. It cuts deep, just the sound of it. I did not struggle through 22 years of life of cerebral palsy and neurosurgery to have some college frat boy call me a cripple. I have been through more than most people at my age, have grown incredibly strong, and it made me who I am today. All I ask is that you don't judge a book by it's cover and take into consideration that there are feelings inside this "crippled" body of mine.

Everything else has been positive though. I have seen immense improvement compared to before surgery and it's only going to get better. I can't wait to see the end result.

I was also recently nominated for Beauty Revived's 50 Most Beautiful Women. They pick a woman from each state who demonstrates what true beauty is and I am so honored to have been picked. I had a photo shoot last week with Shannon Elvira Photography (check out her work, she is AMAZING) and it will be in a magazine coming out later this year! It's so humbling and amazing knowing that other people can see my story and hopefully find some strength from it. It brings tears to my eyes when I get messages from strangers asking me about how it was growing up with cerebral palsy because they have a granddaughter, son, etc. who is struggling with it now. It brings joy to my heart to answer all their questions and help other people through my experiences.

Thank you all for the continued support and love. You all know how much you mean to me.

XOXO
Bree
:)

February 20th: The Day of Surgery

Clearly I have done a horrible job of keeping up with my blog! I intended to write most days while in the hospital but between occupational therapy, physical therapy, napping, and dealing with the pain, I didn't find much time to do so! So I am going to play catch-up and write a bunch of blog posts now. This is mostly for my own benefit so I can remember the experience in detail while it's still fresh in my brain so I apologize if you don't know some of the people I talk about or if it's lengthy. I'm going to include most details I can remember so prepare for a short novel. Per usual :)

So let's go back. Back to the morning of surgery.

I didn't get much sleep. We had 6 people in one hotel room so we were packed like sardines. Dad and Nicole had their own bed; Mike, Jess, and I shared one bed and my stepbrother probably had the best sleep because he slept on the floor on a bunch of pillows. I was tossing and turning all night, sweating because there was so much body heat in the bed, and I'm sure my nerves didn't help me sleep at all.

After we all got out of bed at about 4:45 that morning, I had to take another chlorhexidine shower. Chlorhexidine is a liquid that is used to prevent infection to the surgical area. I took one the night before as well. We got dressed and made the freezing cold walk across the street to the Mary Brigh building. It was snowing pretty hard and the wind made your skin feel like it was going to fall off your face. Those two weeks I was in the hospital were some of the coldest nights that Minnesota has ever seen. -35 degrees Fahrenheit at times.

Once we got there, we were transferred to the pre-op area. I changed into my hospital gown and grippy socks and then proceeded to answer a million questions. Dad called it the "Spanish Inquisition" LOL. We were there for about two hours then I was transferred to yet another pre-op room at 8 A.M. I had to say goodbye to my family and friends which was incredibly hard. I was choking back tears the whole time but surprisingly held myself together. I'm choking up thinking about it now. That was the closest I got to crying before surgery.

Once I was in the pre-op room, I ended up waiting for hours. Dr. Wetjen had to do an emergency surgery so I didn't get to go into the operating room until 11 A.M. Those three hours were the longest three hours of my life. Dad kept a log the first few days I was there and he wrote "Bree says she was calm, but her blood pressure said NOT". I was definitely not calm lol. I had to tell myself I was and I felt I had to be strong for everyone especially my parents. I think they were more terrified than I was at times. I took a few walks around the unit while I was waiting just to keep me occupied. I turned the TV to a channel that was playing hip hop music so I could keep my mind off surgery for awhile. I actually fell asleep for a bit until the neurosurgeon came to talk to me. Then they let my mom and dad come sit with me for awhile while I waited. That was a great distraction. I needed support in that moment. We sat and watched the NFL Combine together. It was nice to see a fellow Iowan, Brandon Scherff, participating in the combine as I sat. It gave me something to focus on and helped calm my nerves a little bit. So thanks for that Brandon!

Numerous people came to see me while I was in pre-op. The anesthesiologist came to put an IV in my hand so they could administer the drugs before surgery, doctors came in to test different things, nurses were checking my vitals, etc.... Of course I asked about being intubated and if anyone remembered and if he had knocked anybody's teeth out while performing the procedure. His answers made me feel a little more at ease.

Finally, it was time to go to the OR and say goodbye to my parents yet again. They met up with the rest of my family and friends in the waiting room while I underwent surgery. I was most nervous once I got to the OR. There were people everywhere. Neurosurgeons, doctors, assistants, nurses, anesthesiologists. There were probably at least twenty people in the room. They didn't waste much time. I was administered the anesthesia within 5 minutes of being in there. The last thing I remember is a nurse holding my hand and telling me that everything was going to be okay. A gentleman put the mask over my nose and mouth (this is when I was most terrified. I hated that feeling) and told me that someone was going to give me the IV medication. Then I drifted off to sleep thinking about being on a beautiful, warm beach with my closest friends and family.

Surgery began at 12:30 PM. Dad received a call from the nurse communicator at 1:30 that said I was under the microscope. My back was open and they were cutting my nerve endings.
2:20 PM: call from nurse, I was getting finished with surgery and should be in recovery soon. The whole surgery only took a few hours. It's crazy to me that they can open somebody up, cut parts of their spinal cord, and sew them up all in that short amount of time.

I'm very thankful that dad kept a log of everything. It's nice to know little details of things that happened. He wrote: "Dad, Nicole, and Mike are in the cafeteria. We had a great conversation about Bree's strength and courage to have this surgery." These are things I need to read when I get discouraged. I really do have the greatest support system.

"2:30 PM: Met with doctor. He told us about the surgery. He removed the vertebrae above the L1 and went down to the spinal cord. He cut the nerves that caused some of the spasticity. Doctor said her legs will be tired since the nerves he cut went to her hamstrings. This will cause some temporary numbness but should go away quickly. Doctor told us this surgery has done many good things for the who have had the surgery. The cut on Bree's back is only about 4 inches long and he used body absorbing stitches to put her skin back together. Bree needs to stay motivated and work hard to start walking like she can."

"3:25 PM: Bree is in the recovery room. We can't wait to see her."

I'm not sure at what time I woke up from anesthesia. The first thing I remember is waking up and asking the nurse if it was over. She said yes. Second thing I asked was why my butt hurt lol. (I found out a month later that they stuck a needle in my anal sphincter to test which nerves were my bowel nerves. Still traumatized from hearing that but it does explain why my butt hurt.) The pain from my waist down was unlike anything I had ever felt before. Everything was tingly and numb. I kept telling people it felt like it was asleep but 10 times worse than a foot that fell asleep. It was painful every time I moved or even if someone lightly touched my leg. I woke up with a catheter, an epidural in my spine, and a million IV's it felt like. I couldn't stop crying. The nurse told me that was common when people came out of anesthesia.

Eventually I was transported to my post-op surgical unit at 5:20 PM. My family was waiting for me in the room. I saw my mom outside my room and started yelling for her from down the hallway. The nurses shushed me lol. I was just so excited to see them and show them I was okay. I was still crying and laughing and I can only imagine what that looked like. Dad wrote "she was crying and said her eyes wouldn't quit watering. Good one!!" Sounds like something I would say. I started crying harder for whatever reason and of course my oldest brother came in while I was bawling. I figured he would make fun of me for it but he was actually nice from what I can remember. It's all a bit hazy. Soon everybody came to see me. My brother's triplets came in and my niece Addie gave me a little stuffed dog. I think it freaked out my nephews and niece to see me hooked up to so many things and being unable to move. I think everybody was emotionally exhausted from the day and I was exhausted from neurosurgery but it was so great to have everyone with me in the room. I really needed them there at that time. The nurses weren't happy that I had so many visitors but I honestly didn't care. Being surrounded by all that love and support is really a huge part of healing. I couldn't imagine going through something like that alone.

People that were there the day of surgery: My dad, Nicole (stepmom), my stepbrother Nick, my brother Ryan and his triplets Addie, Brady, & Colin; my mama, her boyfriend Ron, and my closest friends Jess, Mike, Bridget, and Morgan. Thank you all for being there. It meant more to me than any of you will ever know. I love you.

That night I made the nurse take out my catheter. It was so unbelievable painful. Every time I moved it felt like my bladder would spasm. Combined with the numbness and tingling, the pain I felt was unreal. I'm pretty sure that night was one of the few times I cried from pain while I was hospitalized.

Mike and Jess stayed with me for most of the night. Mike held my hand as I fell in and out of sleep and they watched television and kept me company. Dad came back late that night with a toothbrush and toothpaste (because of course I forgot to pack one of the most important items). We ordered my meals for the next day and then Dad and Mike went back to the hotel. Jess stayed with me on a cot the hospital provided. I woke up every couple hours that night to be flipped from side to side and to get pain meds. The braces I had to wear were the worst. They kept my legs completely straight so I could start stretching my hamstrings but they made it nearly impossible to get any sleep.

I think that's the end of day one!

Sheesh. That was a long one but that was the busiest day of them all. I didn't want to forget anything about this experience. The good, the bad, the ugly. I want to remember it all.

February 20th was the hardest day of my life. I think back to the pain, the fear, the chaos of that day. It's encouraging to me now because if I could get through that day, I can get through just about anything.

More to come!

Xoxo,

Bree :)

                        Headed to the last stop before surgery! Saying goodbye to everybody.

                                                       Mayo Clinic in Rochester, MN

           My incision the day of surgery! You can also see my epidural hanging out there.

The Calm Before The Storm

The day has officially arrived...

I report for surgery at 5:45 a.m.

I'm surprisingly calm for having neurosurgery in the morning. I'm almost expecting all my nerves to hit me at once and cause me to have a panic attack but I really don't think that'll happen. Deep down, I know this was meant to be and everything will work out exactly how I want it to. There is no need to worry about things that are beyond my control at this point.

It helps I have an amazing support group that will drag their butts out of bed at 5 a.m. to see me off.

I am going to keep this one short and sweet so I can spend some quality time with my friends and family.

Thank you to everyone who has reached out to me today with the kind thoughts, prayers, and positive vibes. Please keep them coming :)

Catch ya on the flip side!

XOXO,

Bree
:)

TEN DAYS!

Holy moly Batman. Ten days away.

I've started to prepare more for the big day. I made a hospital packing list. If you know me well enough, you know I am the queen of lists. I make them for absolutely everything and I'm infamous for never finishing them. One of my many flaws :)

I'm also pampering myself before surgery. I scheduled a massage a few days before surgery and a hair appointment because I am in dire need of a cut and color beforehand. AND I am getting my nails done the day before I leave. I need to worry about recovering and not about how horrible my nails and hair look, ya know? #girlproblems

The Neurontin (nerve pain pill) that I am taking is making me nauseous at times but other than that I haven't experienced many of the side effects of the pill. Besides flatulence. :(  TMI I know but I did say I wasn't going to sugarcoat anything right?

I am only getting more and more nervous as time goes on. The excitement is still there but definitely on the backburner. I have to be intubated (meaning I have to have a tube inserted into my throat to aide in breathing during surgery) and I made the HORRIBLE mistake of YouTubing videos of intubating and extubating. DO NOT DO THIS IF YOU'RE HAVING SURGERY. It scared the poo out of me even though I've seen it done numerous times at the hospital while working. But now I'm more worried about being intubated than having parts of my spinal cord severed. How ridiculous is that?

A list of more things I am worried about...

1) Remembering the nurses taking the tube out of my throat
2) Saying something embarrassing while I'm coming out of my anesthesia
3) Having to go #2 while I'm on bedrest :/ (LOL another TMI. Just being honest!)
4) Having to lay flat for 24-48 hours. I'm really good at being lazy but not THAT lazy.
5) Maybe I should be worried about being paralyzed after but my neurosurgeon, Dr. Nicholas Wetjen, is much too good to even be concerned about that. And he went to med school at Iowa so I have extra faith in him :)
6) Experiencing a level of pain I've never had before.

I am bringing plenty of distractions with me to help push through the pain. Here comes yet another list!

1) My computer! Netflix will keep me plenty busy along with social media and my blog! I will try to keep you updated as much as I can. My friend Jess will take over for the first couple days after surgery to let you all know how I'm doing.
2) Books! I am bringing the book Foxcatcher, an autobiography about the murder of an Olympic wrestler. Also a quote book that was given to me by a stranger who is now a friend. She said it helped her through a tough time so I imagine it will help with mine! (Thanks Abbie!)
3) Super Nintendo. I am a Super Nintendo enthusiast. Hopefully they have the right hook ups I will need in order to play because that will help distract me for hours on end. I don't mean to toot my own horn but I'm pretty darn good. I grew up playing my older brother so I HAD to be good. I'm better than him now though. (Hey Ry) :)
4) My friends and family. I have an AMAZING support group that has helped with so much throughout this journey. The first weekend there I will have plenty of people to help out and distract me. My dad and stepmom are flying in from Cali the day before and my mother and her boyfriend will be there. In addition my brother and his 5-year-old triplets will be there which will be a wonderful distraction. My best friends Jess, Mike, and Bridget will be there too! And perhaps my stepbrother. There are so many people I can barely keep track! My sister would be there but she is having a baby any day now so she will be plenty busy. February is quite the life-changing month for us.

If anyone else has any distraction recommendations, please let me know!

Wednesday and Thursday are my last nights at work and after that I will be meandering around Iowa City until I leave for surgery. So if anyone would like to meet up beforehand, let me know!

Thank you for all the love and support. You all have a special place in my heart.

XOXO,

Bree :)

The Countdown Begins

It's fascinating how one day of the year can hold so much meaning for an individual: that one date you will never forget, the one that's imprinted into your brain. The one that changes your life forever.

February 20th is that day for me.

February 20th is the day that is going to change the rest of my life. The day I have been waiting for since the moment I was born. 21 years of waiting, wishing, wanting something more for my life. And now it's finally in my grasp. 14 days until my life is changed forever. How do you prepare for something like that?

I imagine most of you reading this already know a good portion of my life story, but in case you don't I will give you some background.

I was born with Spastic Diplegic Cerebral Palsy. My umbilical cord was wrapped around my neck around the time I was born causing me to lose oxygen to my brain. My parents didn't know something was wrong until I started to walk and they noticed I had an abnormal gait. They took me to doctors who told them it was a toddler walk and I would outgrow it. Unfortunately, I did not.

There is no cure for Cerebral Palsy so at that point in time, the only thing we could try to do was make a better quality of life for myself and improve my gait. I began physical therapy at the age of three and started to wear leg braces. Which I absolutely hated. Although I did have a pretty cool pair with Bugs and Lola Bunny on the back.

I always knew growing up that I was different. The braces gave it away, I had to go to physical therapy twice a week after school, I couldn't participate in gym class like everyone else could. I felt like an outsider at times. My family really pushed me to prove myself though. They wouldn't allow me to feel sorry for myself and made me realize I can do just as much as anyone else could. Growing up in small town Iowa also helped. I went to school with the same people from Kindergarten through graduation. Everyone knew who I was and accepted me for who I was, never allowing me to feel like an outcast.

Fast forward to my freshman year of college. I began seeing a doctor who specialized in neurologic disorders. We discussed treatment options for me to help with the effects of CP. We decided Botox injections were a great option. At the time I didn't want anything invasive and shots were quick. Painful, but quick. The Botox was intended to weaken my calf muscles since they were so contractured. It definitely helped. I didn't drag my feet as much which has always been a problem for me (and my parents who had to buy me countless pairs of shoes).

One day, about a year ago, I stumbled across an article on Facebook from a woman who had a Selective Dorsal Rhizotomy done as an adult and had amazing results. I had never heard of the surgery so I googled it and all the qualifications for the surgery fit me perfectly. I researched it for hours and hours, so excited that there might be something out there that could really help. The next time I received Botox injections I asked my doctor about the surgery. She thought it was something to look into so she referred me up to Mayo Clinic in Rochester, MN to talk to the team up there.

More about the surgery here --> http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr

And that's when things started happening so quickly. I met with the rehab doctor, the neurosurgeon, physical therapists, occupational therapists, social workers, participated in a gait lab, and had an MRI. After this, the team decided I was a great fit for the surgery and it was scheduled!

Insurance was a nightmare to deal with but we eventually got it squared away. I started a GoFundMe page and we had a couple fundraisers to help with the mounting hospital bills.

AND NOW IT'S REALLY HAPPENING!! I can't believe it. It's so surreal.

I'm beginning to get so unbelievably nervous. I began taking my Neurontin (a pill that will help with nerve pain after surgery) and that's when it really hit me that it was coming up much faster than I thought.

I am going to try to keep this blog updated because 1) many people have asked me to keep them updated and this is probably the easiest way to go about it and 2) I want to make a blog for other people with CP who may be interested in getting the surgery. In all my research I found the most beneficial sites that I found were the ones written by people who lived through the experience and could tell you firsthand what to expect.

I vow to write to you the real, intense, emotional rollercoaster I'm about to experience. I won't sugarcoat it. There will be good days, there will be bad days. And I want you all to be a part of it.

Thank you all for the never-ending support and outpouring of love. I am eternally grateful for each and every one of you.

I want to write so much more but this is a novel already. Please feel free to ask me any questions.

Until next time.

XOXO,

Bree