20 things to do on the toilet

Having a chronic illness that attacks your bowels leads to plenty of toilet bonding time!! Here's a list of 20 things you can do while you're chillin' on the can:

1. Read the back of every shampoo bottle in your shower
2. Sing the entire Bohemian Rapsody (quality is not part of this discussion)
3. Call a friend or family member for a chat
4. Write a blog post about what to do when you're stuck on a toilet *wink-wink*
5. Scroll through any and all social media
6. Reply to your emails
7. Watch an episode of your favorite show
8. Post something motivational to your social media
9. Make today's to-do list
10. Ponder your place in the universe
11. Practice a foreign language on Duolingo
12. Memorize pi (yes the number)
13. Read a new book
14. Watch an assortment of random YouTube videos
15. Brush your hair 100 stroke
16. Moan and groan about your bowels
17. Pet your poochie
18. Cancel plans for the day
19. Plan your wedding on Pinterest
20. Yell, "I'll be done in a minute!" To the hoard banging down your door

What would you add to the list?

Chronic illness 101

Some of you may wonder, "Mhm, how does this whole chronic illness work? What does it really mean to have a chronic illness?" Well here come chronic illness 101, the funny, the sad and the real life truth!

First off chronic illness means that you get to enjoy this for the rest of forever. Yup! You're one of the lucky (or is it unlucky, I can never remember) ones. You might get better, for a while, but it never truly goes away. And living with chronic illness includes the forced smiles and mumbled "me too" when people say: "Aren't you better yet?" Or "that's interesting" when someone, with a fast medical degree from the university of the Google "I heard that if you do X Y or Z you'll be cured" Now don't get me wrong folks, they have the best intentions but they don't quite get it. So a healthy ability to nod and smile is a must for anyone with a chronic illness.

Second planning is key! You will have bad days or weeks or months at time and you need to have an action plan for that. Mine includes an assortment or comfy pjs, an understanding workplace, the go to "fix its" like: a hot bath or eating nothing but rice and maybe an egg for the day, and most important an easily accessible bathroom! Now everyone's action plan will be different and needs to meet their needs and their chronic illness specifically. Even if you and your neighbor have the same diagnosed illness your specific symptoms and struggles would be different so therefore custom action plans are essential.

Third adjust ALL expectations! This is an absolute must for anyone living with a chronic illness. For example at one point during my chronic illness diagnosis journy I wasn't really capable of eating and was dropping weight rapidly so my expectation was to eat something, literally ANYTHING, everyday. This points out a key aspect of expectations as your situation changes so must your expectations. I also encourage kindness first in setting expectations for yourself. You know yourself well you know your capabilities and you know when you're throwing in the towel or overdoing it so honesty with yourself is also key. Finally never feel like you have to justify your expectations for yourself, becuase you don't have too end of story.

Fourth find humor in your situation. I can't think of anyone who finds poop jokes quite as funny as someone living with UC. My family has figured this out and let me tell you nothing makes me happier than getting a poop related meme sent to me. This is not to say that you aren't allowed to have hard moments and cry or pout or shout or whatever you do to express your very real emotions. But being able to find joy and humor in all the odd moments is a super healthy coping mechanism. Full disclosure I have a secret Pinterest board dedicated to amusing poop memes!! So laugh out loud and laugh often, it really is the best medicine.

Finally surround yourself with good people. This can be one of the hardest parts but your life is already hard enough if there are negative people who leave you drained and unhappy after you spend time together cut them out! That sounds harsh sorry just leave that person as a Facebook friend only. As someone who lives with chronic illness you need people who are givers not just takers. You need to be needed, we all do, but you also need people who are willing to cancel plans and just hang at your house while you nap. You need people who see a need and fill a need. Hopefully at least one member of your family is included in the good people group but if not that's okay, people can change don't give up on them. (This is literally why we have facebook) But for now find those good people and keep them close.

In essence having a chronic illness is hard and yet wonderful at times (did you sense the touch of sarcasm? It was definitely there). Maybe this has been informative, maybe someone actually read this (hahaha,now that's funny), maybe this is something that inspires or helps you. I sure hope so!! 

My skin hurts

So the title is pretty much the gist of this post. My skin hurts and it's the worst!

So something that brings an added measure of unique to my chronic illness life is that I have been soft diagnosed with Pyoderma gangrenosum. Basically it's another inflammatory illness and it causes skin ulcers. The ulcers can appear anywhere however mine are typically on my chest which is very sensitive and causes some lovely scars. Also pro-tip don't Google image this, it is terrifying and also nasty so take my word and just don't.

Anyways, I say soft diagnosed because by the time I finally got it looked at it has healed over enough that the dermatologist didn't want to biopsy it and cause it to reopen. These ulcers have a tendency to not heal, like ever. So she just looked at symptoms and such and said it is likely pyoderma gangrenosum. And oddly this has some connection to ulcerative colitis and crohns disease. Doctors don't fully understand this connection but it's a thing regardless.

And as of lately the scar on my chest has been bothering me. Now it's starting to look a little open and sore and the pain is awful. I mean the lightest touch is so incredibly painful! And boy does this bring out a host of pity party moments... yeah. The thing is in some ways I'm really grateful. Every time I feel like I'm making really progress I feel like I slide right back down the hill. And I'm grateful because I have so much help. Can you imagine dealing with all this chaos and drama solo? I certainly cannot. And so I am grateful for the support team I have been blessed with. I'm also grateful for each hard moment becuase it makes the good moments so, so much sweeter. It's like night and day difference! So perspective is always a positive thing.

Anyways, if you're hurting and struggling hang in there. Have peace. Hold on. You got this!!! Try to have perspective and believe things will get better.

Social media and the lies we tell oursleves

Let's set the scene, if I had to guess it's pretty familiar to most of us: it's early in the morning, maybe you just woke up, and you pull out your phone. You open Instagram or Facebook and start the 'oh so important' scroll, pause, double tap 'Like' over and over again. Then you see it: the happy couple announcing, "We're pregnant!" Or the new couple announcing, "I said yes!" Or the independent and free-spirited young adult, "Europe here I come!" Or my personal favorite the glowing mom of 3 who writes, "Everything is better organic!" You feel it yet? The sinking dread, the heavy hopelessness becuase they are so happy, their lives are so perfect, they have better kids, nicer jobs, more excitement and then you fill yourself up with that awful empty feeling, suddenly your day is already ruined and you haven't even left your bed yet.

There is no shame in admitting we've all been there. I know I have! It's one of the dangers of social media and the root of one lie we tell oursleves. Let me be clear, social media is not the villain in this story, nor is it the friends who share the happy moments in their lives, the enemy is you! *gasp* Shocker I know right?! Okay so it's not really you becuase that just causes more issues no it's the lies we tell oursleves. Here are 3 lies we tell oursleves and social media is right in the mix of 'em:

1. Comparison! Becuase of these happy posts and perfect pictures my friends have perfect lives and I don't. Comparison never leads to happiness! It is one of the adversaries tools to make you doubt your worth and value becuase of another person. We are unique individuals, no two lives look the same. Each and every person faces different challenges and trials, I promise you no one is immune. And deciding how perfect another person's life is based off what the shared most recently on Facebook isn't a fair judgement.

2. Posting my opinions and views influence change. This is a lazy way to live what you believe. Yeah it's great to post that you're pro-life or anti-guns or concerned about human trafficking, but no one takes a Facebook post seriously. I mean except for online trolls... that's another discussion entirely. If you want to influence change get out and volunteer! Donate to the causes you beleive in. Teach children, teens, adults the truths you believe in. Learn to public speak and tell the world why they should care. Sitting behind and screen and hitting the share button is great, I'm not saying you shouldn't. But I am saying that it doesn't change anything, the only way to promote change is to get up and off the phone and actually do something.

3. I can only post what's good online. Please don't misunderstand this one, I am not saying all your problems should be hung out to dry on your Facebook. But I am saying it's okay to be real online. It's okay to post a picture of your messy kids and still be grateful for your family. It's okay to post a selfie from the hospital as you get your I.V. treatment. It's okay to have friends post the pictures you didn't approve becuase someone will notice your double chin. No one is actually perfect in this life. We all have bad days and hard days and things we dont parade around to the rest of the world. That's okay! But just peeling back the curtain enough for someone to see the human in you is beautiful and should be shared.

*Just gonna acknowledge that this blog is as much a part of the silliness of social media as anything else. Believe me the irony is not lost!

March Book

So my posting has gotten painfully lazy as of late... but here I am now.

The book I read in March was one highly recommended to me entitled Man's Search for Meaning by Viktor Frankl. Not so very long ago it was on a list of like 10 books everyone should read. I honestly don't know if it's still there or not. However I will reccomend this book to literally anyone who asks!!

The first half of the book is Viktor sharing his experiences during WWII in different concentration camps and how he developed Logotherapy. The second half of the book is a in depth explanation of Logotherapy. Not gonna lie here the second half was a bit difficult to follow.

There was so so much quality content in this book. It's difficult to pinpoint just one or two to mention. I'll do my best though;
The first I'd like to mention is Viktor Frankl's compassion for his fellow man. Even as he described his life in camp and the cruelty of the Nazi's and even some of the prisoners he never was judgemental of harsh. Instead he always expressed compassion and even understanding of their actions and choices. I think that says a lot about his ability to he and overcome his experiences.
The second thing taught in the book that stood out to me was as he discussed suffering he made the analogy that suffering is like a gas and it fills any room equally. And basically he was saying that it doesn't matter what your suffering is or even how bad it is it can still consume you (or fill you like gas in a room). And regardless of what the suffering is the way we overcome it is the same.
And third his belief that regardless of our circumstances life can have meaning if we choose to make meaningful three aspects of our life: in work (doing something significant), in love (caring for others) and in courage during trials and difficulties. I thought this was an awesome. The idea that life can have meaning and even be fulfilling in a concentration camp seems pretty farfetched however Frankl lived it, he found meaning and he saw others find it too. And in some ways that's what makes this book and Logotherapy have any credit at all. Becuase anyone can find meaning in their life, no matter the circumstances or difficulties you face. And that is an empowering thought.

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.