Well it's been 3 weeks! This past week I have been able to be up and around more. I have been able to run errands with my mom and have felt good enough to actually put nicer clothes on. We are trying to wean me off my oxy and slowly but surely it's working. My stomach currently hates me so I'm really trying to stop the oxy to hopefully help with my discomfort.
In all honesty, the challenges I have been facing this week are more mental/emotional then anything else. It's really tough seeing all of my friends go out and have fun adventures and be able to do normal things. I'm not a person who has ever not been doing something. I can't drive, I can't hike, I can't dance, I can't do any of the normal things I could do in the past and it's driving me absolutely crazy. I'm also just now having the realization that this surgery might not even be successful... Only about 40-50% of patients find complete relief and that really freaks me out. To know that I am going through all of this pain and sickness and it might not even be 100% successful is really hard. I'm naturally a very positive person and I have been throughout this journey thus far, but I did have my break in that positivity a few days ago. It was bound to happen anyways. I prayed extra that day. God has been so good to me and I just have to have faith in Him to keep lifting me up. Thank you so much for the constant prayers and support. I can't be any more blessed :)
#CMstrong
Tuesday, May 31, 2016
Thursday, May 26, 2016
17 Days Post-Op
Hello everyone! I have enough energy to write a mid-week post :)
Yesterday I had my two-week post-op follow up appointment up in Seattle. Everything is looking good and normal. I have weird sensations all around my head and upper neck since my nerves are waking back up again. It is definitely the most interesting thing I've yet to experience! It feels as if the right side of my head is bigger than the left side, but my mom swears it isn't haha. After my appointment I was pretty darn exhausted. We left the house around 8:15am and got back at 12, so that was four hours of sitting upright, and I had never done that before. So I was in a bit of pain for a few hours that afternoon/evening but felt better after 7:30pm. Monday and Tuesday I definitely had struggles with my pain levels. I'm really hoping that that is now in the past. I'm feeling pretty darn good at the moment and am REALLY hoping today stays being a good day and that my recovery just goes up from there. Thank you for all of the continued support and love! #CMstrong
Yesterday I had my two-week post-op follow up appointment up in Seattle. Everything is looking good and normal. I have weird sensations all around my head and upper neck since my nerves are waking back up again. It is definitely the most interesting thing I've yet to experience! It feels as if the right side of my head is bigger than the left side, but my mom swears it isn't haha. After my appointment I was pretty darn exhausted. We left the house around 8:15am and got back at 12, so that was four hours of sitting upright, and I had never done that before. So I was in a bit of pain for a few hours that afternoon/evening but felt better after 7:30pm. Monday and Tuesday I definitely had struggles with my pain levels. I'm really hoping that that is now in the past. I'm feeling pretty darn good at the moment and am REALLY hoping today stays being a good day and that my recovery just goes up from there. Thank you for all of the continued support and love! #CMstrong
Monday, May 23, 2016
2 Weeks Post-Op!
I cannot believe it has only been two weeks since I had my massive surgery. I can honestly say that I am pretty darn proud of how far I have come since May 9th. On a side note, I was trying to create a mid-week post, but for now at least I think updating once a week through my blog is most beneficial for myself. This way all of my followers can get a summary of how things are and I can reflect on my personal progress! So here we are.
This past week has been a lot easier than the last. After my puking incident, we were able to get my pain under control and have it stay that way consistently. I was noticing a pattern of what times during the day I get tired or need rest and when my pain is increased. By switching some of my medications around on my time schedule, I was feeling a lot better and more relaxed (to the highest degree a brain surgery patient can be).
Wednesday was my first day out of the house since Oliver's adoption and it was so successful! I'm going to be honest and say that I was pretty scared to see how I ended up feeling the rest of the day because I didn't want a repeat of the past Friday. My mom took me out to TJ Maxx and even though we were only out for about an hour, it was a great first step to feeling normal again. I then continued that trend of going to a store in the morning with my mom on Thursday and Friday and felt very good about it all. In the afternoons, I would relax on the couch, ice my incision, and often take some really amazing naps! This pattern of activity has really been working out for me and helps control my pain. The thing I have been struggling/getting irritated with lately is my incision itself. It is starting to scab over and becoming pretty darn itchy. I've also been having a hard time with laying comfortably. My neck and the back of my head are obviously pretty darn sore, but I just haven't found the perfect combination of pillows and blankets to help me out, so hopefully that gets resolved soon!
I feel extra blessed reflecting on the past week I've had. My diagnosis and surgery has taught me a lot about myself and my strength and character, but it has also reaffirmed my love for the simple aspects of an every day life. I am beyond glad that I was able to show up at the dance competition my old studio attended and was able to watch them dance on the stage that my roots were built on. The hugs and surprised faces of seeing me up and out in public gave me just that much more strength to power through my bad day and good days. Thank you all for your continued love, good thoughts, and prayers. #CMstrong
This past week has been a lot easier than the last. After my puking incident, we were able to get my pain under control and have it stay that way consistently. I was noticing a pattern of what times during the day I get tired or need rest and when my pain is increased. By switching some of my medications around on my time schedule, I was feeling a lot better and more relaxed (to the highest degree a brain surgery patient can be).
Wednesday was my first day out of the house since Oliver's adoption and it was so successful! I'm going to be honest and say that I was pretty scared to see how I ended up feeling the rest of the day because I didn't want a repeat of the past Friday. My mom took me out to TJ Maxx and even though we were only out for about an hour, it was a great first step to feeling normal again. I then continued that trend of going to a store in the morning with my mom on Thursday and Friday and felt very good about it all. In the afternoons, I would relax on the couch, ice my incision, and often take some really amazing naps! This pattern of activity has really been working out for me and helps control my pain. The thing I have been struggling/getting irritated with lately is my incision itself. It is starting to scab over and becoming pretty darn itchy. I've also been having a hard time with laying comfortably. My neck and the back of my head are obviously pretty darn sore, but I just haven't found the perfect combination of pillows and blankets to help me out, so hopefully that gets resolved soon!
I feel extra blessed reflecting on the past week I've had. My diagnosis and surgery has taught me a lot about myself and my strength and character, but it has also reaffirmed my love for the simple aspects of an every day life. I am beyond glad that I was able to show up at the dance competition my old studio attended and was able to watch them dance on the stage that my roots were built on. The hugs and surprised faces of seeing me up and out in public gave me just that much more strength to power through my bad day and good days. Thank you all for your continued love, good thoughts, and prayers. #CMstrong
Wednesday, May 18, 2016
9 (10?) Day Post-Op
Well hello everyone. Most of you guys have an idea of the things I have been going through the last five days or so via the quick Facebook updates my mom and I do here and there, but in this post I'll go more in depth about what was happening and into my personal thoughts throughout this experience of recovery thus far.
I left off with it being Friday and me going out to Oliver's adoption. It was so important to me that I went to it, but it wasn't the best idea for me. I was in a lot of pain the whole rest of the day and it wasn't being able to be controlled well. Saturday was a bunch of the same deal. Suffering with intense head and neck tightness with the sharp surges of pain throughout the muscles that were effected by the incision. I went to bed Saturday night with the hope that Sunday would be a much better day, but Sunday was ten times worse. The sharp surges were never ending and I was unable to relax and breathe through them since the pains were so piercing. I was more nauseated than normal that day but I later found out why when I threw up intensely. After I puked, my mom called the on call neurologist at Swedish to make sure I was okay and to see what next steps to take. He believed that the reason I threw up was from the amount of pain I was in and told my mom to keep me at the highest dosage for my narcotic and to email my surgeon's nurse personally. I email Chelsea, Dr. Delashaw's nurse, and she ordered me more nausea medication and prescribed me the same muscle relaxer that I was taking in the hospital.
Once I had all of those medications in my system, by Monday mid-afternoon I was feeling more under control. I wasn't a fan of the fact that I was relaying on medicine to keep me going, but I'm telling myself that it is what it is and it will be better soon.
On a side note, it's been really awesome being able to hang out with my mom and just relax all day. I've been really good about saying positive thoughts in my mind, but today it became a bit harder to consistently think happy thoughts. I won't go into to much detail, but I just hope I have the continued support I currently have all throughout the summer. It's going to be a tough emotionally and physically.
I left off with it being Friday and me going out to Oliver's adoption. It was so important to me that I went to it, but it wasn't the best idea for me. I was in a lot of pain the whole rest of the day and it wasn't being able to be controlled well. Saturday was a bunch of the same deal. Suffering with intense head and neck tightness with the sharp surges of pain throughout the muscles that were effected by the incision. I went to bed Saturday night with the hope that Sunday would be a much better day, but Sunday was ten times worse. The sharp surges were never ending and I was unable to relax and breathe through them since the pains were so piercing. I was more nauseated than normal that day but I later found out why when I threw up intensely. After I puked, my mom called the on call neurologist at Swedish to make sure I was okay and to see what next steps to take. He believed that the reason I threw up was from the amount of pain I was in and told my mom to keep me at the highest dosage for my narcotic and to email my surgeon's nurse personally. I email Chelsea, Dr. Delashaw's nurse, and she ordered me more nausea medication and prescribed me the same muscle relaxer that I was taking in the hospital.
Once I had all of those medications in my system, by Monday mid-afternoon I was feeling more under control. I wasn't a fan of the fact that I was relaying on medicine to keep me going, but I'm telling myself that it is what it is and it will be better soon.
On a side note, it's been really awesome being able to hang out with my mom and just relax all day. I've been really good about saying positive thoughts in my mind, but today it became a bit harder to consistently think happy thoughts. I won't go into to much detail, but I just hope I have the continued support I currently have all throughout the summer. It's going to be a tough emotionally and physically.
Friday, May 13, 2016
Day 4 Post-Op
Well, I had my surgery! Check in time for it was at 6am, so I was up bright and early along with my whole family. My anxiety level was through the roof as expected. The first nurse then called me in and took me back to registration and I had my mom come with me. At that point I had changed into my gown and was on the hospital bed with an IV line in me. It was all happening so quickly and I was so scared that I started crying. Oh and of course I am the youngest patient in there... But my nurse Jenn at that time was super nice and helped me out and so did my mom.
Then I had to say goodbye to my family and go down into pre-op and OR. I started crying again during pre-op cause there were so many weird noises, oxygen tanks, needles, and bright bright BRIGHT big lights. My anxiety was even higher. So after I met my anesthesiologist, I was given a calming medication (aka "happy juice") and right after they inserted that into my IV. After that moment, I blacked out and don't remember a thing. (YAY)
When I woke my throat was pretty darn sore from the breathing tube that was put down there and I had an oxygen mask and I became really confused. Once I came to terms and they checked my vitals I went up to my private room. My doctor who performed the surgery said that it went so smoothly that I didn't even need to be in the ICU for the night which made me one happy camper! Once I got to my room, my assigned nurse for Monday, Ann, gave me some very ver nice medicine and called my family in. I was in a very decent amount of pain, but morphine and oxycodon were most definitely doing their job. I also throughout that first day and night got a muscle relaxer and a nausea tablet. Monday night wasn't too bad, but Tuesday was definitely my worst day.
Oh Tuesday.. My pain was very hard to control. It was also the first time I tried to walk with the PT, and they also took my catheter out. I also really wasn't eating much. I had a bunch of visitors that day and I felt so bad because I could hardly keep my eyes open. My mom was right: the second day is definitely worse than the first. That night I woke up about every hour and had to make the trek to call a nurse, get up to go to the bathroom, and then try and get comfortable all over again. It sure was a doozy.
Wednesday was a 360 degree turn for me. I was walking better, I was more alert, my pain was in control for the most part, and I wasn't as unbalanced. When Dr, Delashaw made his rounds to see his patients, he said I was doing so good that I could go home later that afternoon, if I was feeling up to it. CRAZY AWESOME. Hospitals aren't all that fun, so even though I was scared to leave, I was discharged at around 2:30pm after getting my own neck brace and walker. That night at home I still woke up often in the middle of the night, but sleep just felt better being in my own bed without a ton of IV lines everywhere. Then on Thursday, I was feeling pretty darn good. I started to become pretty itchy on my head, but that's just due to the fact that my bald spot is growing back hair. It was a pretty chill day with pain in controlled and I had a decent night's sleep!
I woke up this morning (Thursday) feeling pretty darn good for just having major surgery. At 9am, Oliver was going to be officially adopted by the Strode Family and I desperately wanted to go. So my mom and I went and all was fine and then I get inside and its super noisy and my head begins to go nutty. I felt awful. I sat through his beautiful adoption in the courtroom and then went straight home. However, my mom needed to go Target and I thought I would be good to go to hold onto the side of the cart and walk around. Turns out that was a bad mistake and I am paying for it as I type this out. My incision site keeps having surges of pain and my entire head in general has a bit of built up pressure. Clearly I overdid it with my activities for the day, so no more for the next few days at least! (The hot weather definitely doesn't help me out either.)
I'm sorry it took 4 days for me to write an entry, but from here on out I should be better at it :) thank you all for your positive thoughts and prayers! #CMstrong
Then I had to say goodbye to my family and go down into pre-op and OR. I started crying again during pre-op cause there were so many weird noises, oxygen tanks, needles, and bright bright BRIGHT big lights. My anxiety was even higher. So after I met my anesthesiologist, I was given a calming medication (aka "happy juice") and right after they inserted that into my IV. After that moment, I blacked out and don't remember a thing. (YAY)
When I woke my throat was pretty darn sore from the breathing tube that was put down there and I had an oxygen mask and I became really confused. Once I came to terms and they checked my vitals I went up to my private room. My doctor who performed the surgery said that it went so smoothly that I didn't even need to be in the ICU for the night which made me one happy camper! Once I got to my room, my assigned nurse for Monday, Ann, gave me some very ver nice medicine and called my family in. I was in a very decent amount of pain, but morphine and oxycodon were most definitely doing their job. I also throughout that first day and night got a muscle relaxer and a nausea tablet. Monday night wasn't too bad, but Tuesday was definitely my worst day.
Oh Tuesday.. My pain was very hard to control. It was also the first time I tried to walk with the PT, and they also took my catheter out. I also really wasn't eating much. I had a bunch of visitors that day and I felt so bad because I could hardly keep my eyes open. My mom was right: the second day is definitely worse than the first. That night I woke up about every hour and had to make the trek to call a nurse, get up to go to the bathroom, and then try and get comfortable all over again. It sure was a doozy.
Wednesday was a 360 degree turn for me. I was walking better, I was more alert, my pain was in control for the most part, and I wasn't as unbalanced. When Dr, Delashaw made his rounds to see his patients, he said I was doing so good that I could go home later that afternoon, if I was feeling up to it. CRAZY AWESOME. Hospitals aren't all that fun, so even though I was scared to leave, I was discharged at around 2:30pm after getting my own neck brace and walker. That night at home I still woke up often in the middle of the night, but sleep just felt better being in my own bed without a ton of IV lines everywhere. Then on Thursday, I was feeling pretty darn good. I started to become pretty itchy on my head, but that's just due to the fact that my bald spot is growing back hair. It was a pretty chill day with pain in controlled and I had a decent night's sleep!
I woke up this morning (Thursday) feeling pretty darn good for just having major surgery. At 9am, Oliver was going to be officially adopted by the Strode Family and I desperately wanted to go. So my mom and I went and all was fine and then I get inside and its super noisy and my head begins to go nutty. I felt awful. I sat through his beautiful adoption in the courtroom and then went straight home. However, my mom needed to go Target and I thought I would be good to go to hold onto the side of the cart and walk around. Turns out that was a bad mistake and I am paying for it as I type this out. My incision site keeps having surges of pain and my entire head in general has a bit of built up pressure. Clearly I overdid it with my activities for the day, so no more for the next few days at least! (The hot weather definitely doesn't help me out either.)
I'm sorry it took 4 days for me to write an entry, but from here on out I should be better at it :) thank you all for your positive thoughts and prayers! #CMstrong
Sunday, May 8, 2016
Just About Surgery Time!
Wowzers. It's officially the day before surgery. I thought this day would never come. It sure has been a rough and busy 10 days since I've last written!
I officially moved out of my dorm this past Wednesday. That Wednesday I also woke up with a nasty cold (SOS!!!). Wednesday was of course the 5 day mark meaning I wasn't able to take most medicines... So here I am 5 days before surgery having to battle a lovely cold in time for surgery with no medicine...eek! Luckily on Thursday my mom found a few meds I could take, so that plus sinus rinses have been helping. It didn't really hit me that surgery was so close until I realized I was actually finished with my freshman year and that I was at home for four months. I quickly realized that this surgery was all too real. Yesterday we started preparations as a family. My parents cleaned the house, I started using this cream to prevent infections, and we packed hospital bags. Swedish sent me a 20 minute video presentation about anesthesia that I had to go through and after I finished that, full blown panic. I know that my odds are very good since I'm young and healthy, but it's just a rough procedure and of course it's normal to be scared.
My surgery check in time is 6am and who knows when I will actually be taken back to the OR. The procedure should only take a few hours or so, and then I will be spending the rest of the night in a room in the ICU to my knowledge. I'm not exactly sure how many days I will be spending in the hospital, but it's two days minimum. My mom will be updating through Facebook and I will update on the blog and my personal social medias when I come around. Visitors will not be able to come on Monday, but Tuesday limited visitors are allowed if I am doing okay. So this will be the last post before surgery!
It has been a rough few months, but really a rough few years for my health. The Chiari is linked to so many of my previous health problems and I am so thankful for answers and for being able to get my symptoms relieved (even though I'm scared to death). I really want to give a huge thank you to my family and family friends for supporting me through all of these trials and endless doctors appointments. However I also want to thank my amazing school, Cornish, and the awesome people there. It is extremely challenging to deal with something this big when you are away from home, and the friends, peers, teachers, and staff that surrounded me daily were such a huge help on this journey. Not one day passed where I wasn't taken care of, asked how I was, or given dozens of hugs. I couldn't have gotten through without my amazing team of friends and loved ones. You guys are my rock and will continue to be through surgery and recovery.
Thank you all and happy surgery!!
#CMstrong
I officially moved out of my dorm this past Wednesday. That Wednesday I also woke up with a nasty cold (SOS!!!). Wednesday was of course the 5 day mark meaning I wasn't able to take most medicines... So here I am 5 days before surgery having to battle a lovely cold in time for surgery with no medicine...eek! Luckily on Thursday my mom found a few meds I could take, so that plus sinus rinses have been helping. It didn't really hit me that surgery was so close until I realized I was actually finished with my freshman year and that I was at home for four months. I quickly realized that this surgery was all too real. Yesterday we started preparations as a family. My parents cleaned the house, I started using this cream to prevent infections, and we packed hospital bags. Swedish sent me a 20 minute video presentation about anesthesia that I had to go through and after I finished that, full blown panic. I know that my odds are very good since I'm young and healthy, but it's just a rough procedure and of course it's normal to be scared.
My surgery check in time is 6am and who knows when I will actually be taken back to the OR. The procedure should only take a few hours or so, and then I will be spending the rest of the night in a room in the ICU to my knowledge. I'm not exactly sure how many days I will be spending in the hospital, but it's two days minimum. My mom will be updating through Facebook and I will update on the blog and my personal social medias when I come around. Visitors will not be able to come on Monday, but Tuesday limited visitors are allowed if I am doing okay. So this will be the last post before surgery!
It has been a rough few months, but really a rough few years for my health. The Chiari is linked to so many of my previous health problems and I am so thankful for answers and for being able to get my symptoms relieved (even though I'm scared to death). I really want to give a huge thank you to my family and family friends for supporting me through all of these trials and endless doctors appointments. However I also want to thank my amazing school, Cornish, and the awesome people there. It is extremely challenging to deal with something this big when you are away from home, and the friends, peers, teachers, and staff that surrounded me daily were such a huge help on this journey. Not one day passed where I wasn't taken care of, asked how I was, or given dozens of hugs. I couldn't have gotten through without my amazing team of friends and loved ones. You guys are my rock and will continue to be through surgery and recovery.
Thank you all and happy surgery!!
#CMstrong
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