I would like to be honest with you all, this is something that I greatly struggle with. I see myself picking and choosing when it’s okay to stand out from others but then there are moments when I feel embraced. Seeing this saying (Be Your True Self), I feel a great sense of empowerment because it circles back to be the true me. I know that I’m different than others so why would I hide that difference.
Rather it’s standing out of the crowd for my photography/artwork or all of the surgeries and rare medical diagnoses. I definitely see myself wanting to write a longer post on this topic because it’s something that I truly hold close to my heart. Well, it’s late and I need to go to bed.
Most people are scared of the hospital, doctors, blood and maybe even the site of needles. All of this is quite common to be scared of, for me, it’s a huge part of my life. There is something comforting about the hospital. I know that I’ve talked about this before and I truly see the hospital as a second home and I am okay with that. Yes, it sounds completely strange to say that but when you get to know more about me and my story. It totally makes sense that I would feel this way. I do not want to be there, I do not want to have MRI, thyroid levels checked or constantly seeing doctors. It’s all part of my life journey with cowden syndrome, epilepsy, and Lhermitte–Duclos disease.
Northwestern Hospital is my Home, my community of amazing doctors, nurses and staff. I’m so happy that we made the decision to follow my neurosurgeon to Northwestern three years ago. All of my doctors, genetic counselor, and epilepsy social worker have done such an amazing work, they always check up on me(even on their days off/late nights), they even communicate with each other/talk about me and my care. This is why I feel so comfortable and relaxed at the hospital because I not only accept this hard life journey with many complicated medical conditions. I also love challenging my medical team and keep them on their toes. Lastly, I’m very interested in the medical(world) so I want to learn as much as I can and ask any question about my medical care. Even though these feeling of comfort at the hospital and around doctors is strange. I have even been told, “that’s so wearied”. Yes – but not for me and my life. I have also been told multiple times by a variety of different doctors “we do not get patients like you”. Well, I think that’s it for this blog post because now I’m just rambling on.
On my way to work, I find this very interesting. Yesterday when I was leaving for work I saw on the forecast that there might be rain or a mixture of snow and rain. Either way, I knew I had to bring my umbrella.
Today, I did the same thing. Checked the weather and saw rain/mixture of snow was going to happen. For some reason, I completely walked out of the house with out an umbrella and the wrong shoes to get wet. Remember that umbrella might come in handy wasn’t untilI was a few blocks away from my house. I could of turned back but then that would make me late for work. I was just like, really Kaitlyn. You were all prepared for the weather yesterday but today is a different story. I know this was not exciting at all, I have to get off the bus very soon. So I have to go.
I can’t believe it’s been four years since my brain surgery on (February 23,2015). Time truly goes by very fast – wow 😮
Looking back on these past four years it’s been extremely stressful. Not only for my family but also medical team. I’ve definitely been keeping them on their toes😊. I’m so happy that my mom and I made the choice to follow my neurosurgeon to Northwestern Hospital 🏥here in Chicago from The University of Chicago. That one move, completely changed my medical care. I have gained some of the best doctors in their special fields. They not only excepted me and my rare brain tumor but everyone wants to know and learn more. They all communicate to one another about (me). Yes, I’m being talked among the doctors then selves. That’s crazy and something you hardly every hear.
Things that have changed from having brain surgery is my processing is even slower than before. This is something I have always known I had an issues with because of my dyslexia. With that, I’ve learned that I have to take things A lot slower than the normal person. Make sure to I repeat the information back in the person, think what I want to say before I say it and lastly to make sure to keep my mind active. Even though these changes are very hard on myself, especially for my self confidences because I have joked around with my mom and friends that sometimes I (mentally feel old). What I’m trying to say there is that talking can be very hard. Getting my words out can be a struggle or sometimes I say something in my head and what comes out of my mouth is something different. Another thing that has happened with in these past few years. I have moments throughout my day where I stop and stair off and I know I’m doing this. For the longest time my mom and I thought it might be seizures or seizure related but this past September we found out that they are defiantly not. One of the ways, the doctors explained it to me. Even though it’s not seizures but during an EEG test those moments, slow down. They are thinking those moments in time, I’m taking a break\my mind is trying to process what’s going on.
I can’t believe how many people I have connected with by telling my story. That have the same rare condition. While writing this, one story comes to my mind. I was on my instagram account and I reposted a photo\link to my breast cancer story on my YouTube channel. A young women commented on the post and saying she is also a breast cancer survivor. I replied and I generalized my gentic issue and that’s how the breast cancer was found. She then says something like this, “wow, that sounds like my gentic condition, do you have cowden syndrome”? That’s so crazy and random that someone post a comment to my photo and we ended up having the same RARE medical condition. After talking for a while we also found out that we both also have the brain tumor that goes along with cowden syndrome. Having those talks with people, makes me happy and glad that I decided to open up about my journey and life with complicated medical condition.
Energy, is always keeping us moving forward but what happens if your energy is always running on low. I know, this may sound funny/strange but there is definitely a reason behind this saying.
I’ve been dealing with low thyroid issues since the age of 10. Years before we found out about cowden syndrome/PTEN and that’s when we finally made the connection. I think what I’m trying to say, is that feeling this way has been normal, part of my every day life. I wanted to talk about rubbing on low energy because it hasn’t been until these past few years is when I’ve really felt the affects, especially during the winter time. Last May, is when i saw my endocrinologist and I told him about my issues and wasn’t sure if my low energy levels had to do with thyroid Meds needed to be changed or I just had surgery. Everything was fine and my levels were okay so I just thought my body was recovery and things will be back to normal. I have learned quickly that running on low energy even while thyroid levels are good is okay. I always thought having low energy is a signs that my Meds need to be changed.
I called into the hospital to get my levels checked, so I have to go in sometime this week. Having low energy has been on my mind very single day because getting through my days have been getting harder and harder. Feeling like this is so tiring and I’m tired of being tired. Hopefully things will change around when the summer time comes because I do feel a difference in my energy level, especially when it comes to the sunshine and warm weather.