Reaction

So I literally just got home from seeing a new movie, Five Feet Apart (heard of it? Yeah the sappy chick flick about CF... seen it? Well you should! Yes, you'll cry but it'll be so worth it), it was really good and made me cry, a lot, so points. But it also made me want to write this. Here's why:

#1; Awareness! This movie centers on the struggle and lives of 2 individuals who live with CF, Cystic Fibrosis, which is a terminal illness and it's all very sad. This particular movie did an incredible job promoting awareness for CF. The director was a friend of Claire's (if you follow the CF vlog community you know who that is) and she helped and played a role in the movie although she died before it was finished. It was sorta obvious throughout the movie that a huge part of its purpose was awareness. Many people have compared it to The Fault in Our Stars another teen rom-com about sick teenagers who "against all odd fall in love" (which in my opinion is a crap ton of BS but that's another blog) however a key difference was the lack of awareness tFiOS. Yes it's cute and whatever but significantly different. Among the CF community there has been a huge response to five feet apart, both positive and negative. But for the most part the movie did some incredible justice. They really tried to be authentic and show us what CF is really like. That alone was powerful. And for people who live with disease the desire for awareness is huge!!! I mean it's so important to us for people to know and understand what's happening in our lives. In addition to that awareness leads to money that allows for study and that keeps the dream of a cure alive. A real cure. A miracle. Obviously one movie doesn't make you an expert but hopefully it makes you more aware and more open to learning more. Because, speaking for myself alone here, I'd be more than happy to explain my illness to you. I don't know everything but I try to. And if you want to know I'll happily tell you. I honestly think the key to awareness is taking away all the taboos!!! It's okay to not understand something and ask about it. It's okay to be asked. Stop being sensitive. And yeah Google is great but 9/10 each illness is unique to the person so they can really tell you what's up. Anyways... I think yes awareness is the goal. But let's remember to pace ourselves! Just because you know about CF doesn't mean you're aware of UC and you can't know everything about every disease out there but being open and trying makes all the difference.

#2; It felt really relatable. Now let me preface I do not have CF nor do I know anyone personally who does. However as someone who lives with a chronic disease there where just moments that felt so real and relatable to me. Example (no spoilers fear not) expressing fears about relationships. From medical costs to needing extra care to the general uncertainty of being sick. It's hard, so hard and it's a nightmare to imagine bringing another person into that. Or imagining another person being okay with that. Now UC, ulcerative colitis if you don't know, is NOT a terminal illness. However people do die from it, that's usually due to not properly treating it though. More often than not they die of complications it involves, i.e. cancer or ruptured bowels and such. So yeah death is real but not at all like it is for those with CF. That being said the fact that it sort of looms in the corner of your vision is real. And the fact that it take and steals so much from you. That was so real... so real. Any disease, I don't care what, steals something from you; be it freedom, "normal", touch, peace, happiness, breast's, colons, breath you name it... it takes it. And that sucks. And it hurts. So there are moments when you take or steal things back. And I think that's so important.

#3 Obviously the whole premise of five feet apart is that they literally can't be together for fear of the chance of transferring bacteria and well, R.I.P so you can probably guess the ending. My thing is that's a bunch of bull sh*t. Literally Drs know basically nothing (JK they know so much and I'd probably be dead if they didn't). A lot, a painful amount honestly, is still being learned about illnesses, UC and CF alike. And you have to be willing to way your own risks and do your own research and make your own choices. Now am I saying be reckless and who care nobody's getting out of life alive anyways? NO! I am so totally not saying that. However I am saying that we were put on this earth for a reason, each of us has divine purpose here. And one of our personal purposes of living is to have and find Joy. If we can't have that then what's the point. I mean really? Why are we even here if it's just to take our medicine and follow every rule and go through the motions. I call crap on that!!! Find what makes you happy and hold onto it. Why in five feet apart did they literally separate to the point of loosing contact? It doesn't have to be that way. Stay friends, stay close with the boundaries you choose. YOU CHOOSE! Don't give up what brings you true happiness because fact is happiness, joy, true joy is a gift. And if it's the whole point of this than it should be cherished above all else.

Feburary Book

Honestly I was super lazy about getting a book read for feburary and it doesn't help that it's a short month, you know?
So finally in a desperate dash to keep my goal strong I took a book recommended by my dad called, Painting as a Pastime by Winston Churchill.

Okay so the basic premise of the book is to deal with stress you need a healthy outlet, in other words a "pass time." He explains the concept of work and relaxation and then makes a case for painting being the solution to all.

I gotta say this book was an easy read, which I was looking for. It was also a very visual book his ability to describe things was absolutely beautiful!! But I did kinda fall flat to me. It just wasn't the powerhouse meaningful I'm gonna make a change because of this book I was looking for. Which was kinda a bummer.

I really loved how he wrote and you could feel his passion. I think passion goes hand in hand with purpose. Without passion purpose doesn't last. I was truly impressed by how much Churchill loved painting. It was beautiful and frankly seeing another's passion is always inspiring to some degree.  I mean imagine living with that kind of passion for something every day. Maybe not about painting but about something and letting it change and affect the very essence of who you are.

I also liked a simple maybe unintentional lesson that was taught. When you have a passion you must try to pass it on to others.  Tell that what you love, why you love it and encourage them to give it a try. But more than that simple encourage them to find their own passion. Whatever it is and pursue it with all their heart.

So yeah, maybe it was kinda a dull read and painting isn't really my end all thing. But passion for life and belief that you can do anything. That's my thing. And if it's yours I'd say give this cute little book a chance.

Oh you know, just another emotional break down

You can probably guess the content of this post due to the title.... So let's jump right in!

And of course we'll start with a story.
A few weeks ago I got a little cold, it was right after my infusion too. Needless to say I've been in a flare since. I contacted my Dr and he had me do the standard blood and stool tests. Results? Normal, of course. *long sigh*

Thankfully my Dr pulled some strings and got me an appointment with him for this week. #blessed So I drove to my appointment and went to the desk to check in. Turns out somehow the days got mixed up and I'd missed it.

The poor receptionist I'm sure thought I was a crazy person because I didn't hold it together very well. I got another appointment in March! Went to my car and cried my eyes out. I even called my parents and cried at them.

It was a mess!! I also felt kinda stupid. I mean how irrational is it to be crying over a missed appointment. But honestly it was just my breaking point, between the pain and discomfort and lack of sleep I wasn't feeling very stable.

But here's the thing; was it really irrational to express the emotions I was feeling? I'm thinking no. Maybe my belief that someone my Dr was gonna be able to fix everything was irrational. But expressing the emotions you are feeling in a safe and controlled way is good and very healthy.

You need to acknowledge and validate these feelings. It's only right and it's only fair to yourself. But then we act!! We don't just sit there depressed and crying forever. We do something about it. For me I went to the store bought some nature sleep aids, bubble bath, food... things that I can control. That's what we need to focus on especially when things get bad.

So if your in a bad moment, bad day or bad week hang in there. Control what you can. And let the emotions you feel flow through you. It's gonna be alright.

January Book

So for the new year I set a goal to read 1 meaningful book each month. And my meaningful I'm taking not a fictional fluffy YA novel, which is my usual choice. I also define meaningful as something that makes me feel inspired or motivated. I just wanna be moved you know?
So I started my goal strong by reading Let It Go: A True Story of Tragedy and Forgiveness by Chris Williams.

Which you can learn more about on goodreads: http://www.goodreads.com/book/show/15718698-let-it-go

However if you don't wanna do that here's the skinny: Chris Williams along with his pregnant wife and 3 of his 4 children were in a tragic drink driving accident. He survived as did one of his children. After the accident he responded with forgiveness and encouraged all who hear his story to react with love and not hate.

This was truly a powerful story and it really did touch my heart. I finished it while I was sitting at a YMCA and there were definitely some tears shed. Truly I was moved and inspired. The idea that someone could face such an incredible tragedy and not turn to despair and hate. Now he did have his moments and he acknowledged that but he also didn't stay there.

Since getting sick feelings of crushing depression and anxiety have become old friends of mine. And I'm learning slowly but surely that these feeling are real and valid. The wrong response is belittling and punishing yourself for being human and having struggles. The better response is to let them come, cry it out, listen to these feelings. But then wipe you're eyes, let those feelings go and get back up.

Another lesson illustrated in this book was Chris never blamed anyone or anything for what happened. And he never turned against God. He always saw God's love even in the tragedy he faced. And he realized that the only person he could turn to in this trail was God. His humility was inspiring as was his ability to hold onto his faith. He never lost his trust in God's plan.

One of the real challenges I've faced while being sick and dealing with all of the firsts of chronic illness is my ability to truly trust God. I don't think there is a quick solution to trusting in God. Developing trust in God comes from frequent and consistent experiences with Him. I believe trust comes from our  relationship to Him. The ability to submit fully to his will is also something I believe must be learned, so it too takes time. My ability to trust him is still strained but I'm holding onto what I know and waiting for the answers to what I don't.

Overall I'd give this book a 10/10! If you want a book that can inspire and make you cry a little bit then this is for you. If you want a book that teaches you about family, faith and forgiveness then this is for you. So give it a chance!

Thoughts on dating

Dating 101... just don't.... haha just kidding. So I'm gonna be totally honest with you I don't have any friends my age with Chronic illness, so I'm not saying I speak for everyone when I share my thoughts on dating. But here goes anyway!
I can list on one hand the number of dates I've been on. And unsurprisingly they have correlated with my illness pretty well. My first "not boyfriend" (I'm not actually sure what we were but that's a story for another time) and I started going out just as my illness what hitting it's worst point. And everything was about my illness!! It was sweet and I'm sure he meant well, however it was also exhausting and sometimes frustrating. We couldn't go out to eat without him asking and worrying about what I can and can't eat. He frequently got emotional and frustrated with the challenges I was facing. Again, sweet and his intentions I'm sure were the best, but I hated it and I ended our relationship (or whatever it was) just after my ER visit and initial diagnosis.
Now just recently I met another young man and we went on a few dates. The dates were very uncouth and just plain fun. But my favorite part? To my knowledge he knew nothing or very little of my health challenges. So it was never a topic of discussion. When I was with him I felt free. I didn't feel like something broken that needed fixing and I didn't feel limited by my illness. Honestly he left for school not long ago and I'm not sure what would've or could've happened if he hadn't. I know eventually we would've had to talk about it, but for me there was something incredibly liberating about not talking about my illness.
And I learned a lot from these experiences I learned that I have more than enough pity for myself and my problems and sometimes I just need some tough love. I also learned that focusing on my illness or having other people focus on it makes it worse. Finally I learned that different situations can really affect how successful a relationship is. It was a lot of food for thought especially as I am thinking about my future and since I do want to get married someday.
So I don't know what the future holds, I don't know how I'm gonna have a conversation about my illness with someone. I don't know who the right guy is for me or how on earth I'm going to find him. But these experiences give me hope. So come what may, and we'll get through it.

My UC Story

I was diagnosed with ulcerative colitis in March of this year, just following my 21st birthday. But that is not where my story begins....
My story starts like many great fairytales, with an upcoming adventure. I had just turned 19 and made the decision to serve as a full time missionary for the Church of Jesus Christ of Latter day Saints, that meant that for 18 months I would live somewhere away from home serving, teaching and working to help those around me. I was so excited! I had a deep love for those around me and I wanted to share the happiness I had found in following the teachings of Jesus Christ. I received my mission call to Jacksonville Florida and I would go to Utah for 3 weeks to recieve training and preparation at the MTC I was to report there April 13th of 2016.
I was nervous to be leaving home for the first time but I took a deep breath and off I went. It was kinda insane but in a good way. My body didn't react well to the stress, I got sick very quickly being unable to eat and needing to use the bathroom very frequently. Which is more than an inconvenience when you have to bring another person with you, it's a rule for missionaries to stay with a companion 24/7. I was also having some rectal bleeding now I know that should've been a red flag for me but since I had worked as a CNA I knew how to recognize internal bleeding in a BM and that's not what this was. Frankly I thought it was hemroids, they run in my family and I've struggled with bleeding on and off most of my teenage years, always attributing it back to hemroids.
Regardless I was concerned and between my companion and my Branch President in the MTC they had me go to the Dr to try and figure things out. It helped they gave me medications that made it possible to eat and did some blood work. Things looked fine, other than low iron (the bleeding would explain that), they checked for hemroids and surprise I didn't have any! Also a little concerning becuase where was the blood coming from? The Dr wanted to do some stool samples but that would've kept me in Utah and I didn't want to be kept there. I wanted to get to Florida and get to helping people. So I declined and off I went, probably the first if many dumb decisions. (Haha)
Florida was beautiful! My first companion was compassionate and patient. She was a huge blessing. And my health improved slightly. Until suddenly I was sick with fever and chills and the runs all out if no where and unexplainable. Well back to the Dr's I went and this time I did the stool sample, turns out I had gotten Salmonella. Medications helped (sorta) and I was also put on a probiotic to help heal my gut.
The next hurdle came when my grandfather passed away at home. It was hard not to be around to help and my health plummeted. It wasn't made any easier becuase at the time I was training a new Sister Missionary who was struggling with anxiety among other things. I was stretched beyond my limits and so overwhelmed. Once again the bathroom became a close friend and I began to notice bleeding again, I was exhausted constantly, I was hurting and I stopped being able to eat regularly I just sorta nibbled and then forced myself when in public. I sought help but everyone attributed it to stress and irritable bowel syndrome, which also ran in my family. I did get a priesthood blessing where I was promised the ability to eat throughout the remainder of my mission. And that promise was fulfilled! Which was a huge blessing and made things far more manageable.
All things run their course, this was no different, eventually things changed I went to a different city in Florida and was put it a different situation, slightly less stressful. And things actually got quite a bit better. But my health just couldn't behave for long so just over a year in Florida, in March actually, I ended up in the ER and needing emergency surgery due to Appendicitis. That was easily the hardest part of my mission. For a few weeks I was too week and trying to heal so I stayed mostly in bed. I was blessed with caring companions and friends who were wonderfuk caregivers and taught me how to seek help. It was a humbling experience and it very nearly broke me. My health directly following the surgery actually seemed to be perfect and then BAM! Suddenly I was so sick everything came crashing down around me so I once again asked for help and decided to cut sugar and dairy from my diet and it was an answer to pray for over a month my symptoms where in remision and I thought I'd found my answers.
Until once again I was moved to a new area and was asked to train a new Sister Missionary. This sweet sister was my rock as my health both physically and emotionally fell apart around me. She was more patient and understanding than I could've asked for. I even remember talking with her and mentioning that I wondered if I had Crohns or something, I knew nothing about it but I wondered, at this point I was too tired of the hoops it took to get to the Dr and the never ending string of questions with no answers. I only had a few months left I decided to soldier through and deal with it when I got home.
My final month and a half in the mission was my breaking point. There wasn't a day I didn't see blood after a bowel movement, the pain never ceased and I   was totally exhausted. My stress level was once again through the roof between coming home and my health and just struggling with my new and final companion I could go no further. And although it broke my heart I was relieved to be going home. And I was hopefull I could finally find answers, despite my fears of what those might be.
I got home to Wisconsin on Halloween and was too busy to deal with anything at that moment! Both my older siblings got married in rapid succession first November then December. When I finally got to the Dr they did some allergy testing which came back negative and decided to send me to a GI specialist. I met with Dr P. and I wasn't surprised when he simply diagnosed me with IBS. That's what's I'd called it my entire mission. It seemed like a logical diagnosis. We even decided to try a newer treatment for IBS it was an antibiotic treatment that had put many sufferers with IBS into remision.
I started the antibiotic treatment just following a bout with the flu and my health spiralled into nothing the last few weeks of April I was a disaster. I tried to tough it out, downplayed my problems and keep life as close to normal as I could.
March came and so did my 21st birthday and it was the Sunday following that I went in to the ER I couldn't pretend any longer something was wrong and I was terrified. Finally the right questions were asked and they determined to do a CAT scan. My colon lit up light a Christmas tree and the Dr gave the diagnosis of Colitis, however a confirmation was still needed before treatment could start so we got me scheduled for a colonoscopy a week later. That week was hell, no point in sugar coating it. I couldn't eat I had fevers and exhaustion. Emotionally I was broken. My life was held together by my loving parents and a few close friends who repeatedly came to my rescue. The Sunday before my colonoscopy I thought I was going to die, only being slightly melodramatic there. I was so sick at this point I had lost over 20 pounds and saw no end in sight. I tried to go to church and ended up puking in the female bathroom before just going home with a fever to sleep on the couch. My heart was breaking... I was so broken....
They performed the colonoscopy and I was finally diagnosed with ulcerative colitis which is a chronic inflamitory bowl disease. The treatments started and slowly I've begun to heal. Sadly it's been an uphill battle and it's not over yet. And I still fight daily against the anxiety this has created and the pain as we try to find the right medications and truly understand what my bodies doing. Throughout this all I've learned a lot about empathy and compassion both giving and receiving. I've also learned about hope and faith, what they are and what they are not. I've also been so blessed in hundreds of small ways each one reminding me that I am not alone.
The most important thing I've learned is that this isn't "my story" this is simply a chapter in my novel. There is more to who I am than this disease and there will be so much more to my life and my future than this. I am a daughter of God, a true and loving friend, a creater of beautiful food, a lover of good books, a professional napper, a girl with a chronic illness but most of all I am a warrior! UC got nothing on me.

Had a bad day.. :(

Man oh man! Bad days strike out of no where! Life is mostly good, things are always a little stressful but oh well! You deal and find joy anyways. And sure you have "bad moments" in day to day life. Maybe you get the wrong order filled during lunch. Maybe a co-worker calls you out for no good reason. Maybe you date cancels last minute. But those things ultimately don't make you day all out, no good, bad!

So let's talk about bad days.... I'm talking you wake up and your whole body aches. You feel nauseous and can barely eat. You expel far more BM then you expect and your bum hurts for the rest of the day. Then you have a fever and go between hot and cold all day long. Ooh and did I forget to mention you're supposed to work today. And no where is comfortable, not the bed or the couch of even the floor. You just hurt, period.
So you cry and that causes a headache. And you worry about work because they really need you. And you really hate letting people down. But despite your best efforts you call in, and then cry some more. You try to go to Wal-Mart, after all you need a few essentials and yup, you guesses it, you cry at Wal-Mart. And so you spend most of the day napping and crying, kinda pathetic but there's not much else to do frankly. And that is the sum total of this bad day.

So why do bad days happen? And what do we do to deal with them? Well I believe bad days happen for a variety of reasons: (1) we live in a fallen world, and sometimes mortality just stinks, (2) humility is very important in life and sadly  sometimes it takes a bad day to remind you of that, (3) it causes us to remember and rely on Him more, finally (4) it makes every good day all the better and so much more appreciated.
How do you deal with a bad day? Sometimes you just have to wait it out. Know that this too shall pass, your story isn't over yet. And hard as it may seem sometimes bad days are giant pause buttons from our body. So I give you permission to Stop! Rest and take care of yourself. But you do not and never will have permission to give up! Nope never! I promise the sun will come out again soon! And if you open your eyes you will see that He is here, especially when things are hard. So my lovely hang in there. And I pray tomorrow is a good day.