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!