my life... plus crohn’s disease

I was 18 when I was first diagnosed with Crohn’s disease. It was only a year ago, but feels like it was only yesterday. Times flies when you're having fun. HA! It’s really not the drama some people envision it to be. Honestly, I think some people pity me more than I’d ever consider pitying myself – meaning, I don’t pity myself at all. What’s the point, anyway? Pitying myself or crying about the misfortunes I’ve been handed has never and will never bring me any good fortune… The only thing that does bring me comfort and confidence is having faith and tons of positivity, as cheesy and corny as it may be. That’s all there is to it. Joint inflammation? I’ll kick your ass. Abdominal pain? It’ll surely pass. Drawing blood every week or so? Not everyone can say they do that. Whining about things every two minutes and being passive aggressive about it? Yeah, I want nothing to do with y’all. That’s probably my recipe for success… you know, if I was Martha Stewart or something. Which I’m not. At all. But anyway.

“You are so brave and quiet, I forget you’re suffering.” - Ernest Hemingway

Let me tell you how it all went down for me and maybe by reading this, some of you might relate to what I went (and continue to go) through. Sometime in November 2012, I started feeling acute (and I mean acute) abdominal pain several times during the day. It wasn’t pretty. The only way I can describe the pain is by saying it felt like stab wounds to my belly that left me no choice but to completely stop everything I was doing and riding the pain, a bit like what I imagine a contraction feels like. This went on for about five unrelenting months until the real struggle began. My body started basically fighting itself, resulting in swelling of my ankles at first – at some point both of them, so walking was pretty impossible –, and I went to a local physical therapist to try and solve the problems that kept coming up left and right. It worked, until my knee started retaining fluids and essentially locked down. My joints were severely inflamed, my knee hurt like a mother and wouldn’t budge, my elbows were beginning to lock down as well, my lips were blue, skin yellow, chills and hormones out of control… it was a real chummy period in my life, heh.

“You were given this life because you are strong enough to live it.”

At some point around April 2013, my body was so badly infected that my organism started to shut down, with high fevers and chills and cold sweats. Nothing seemed to work, nothing seemed to keep my body from swelling and rebelling against me. Sometimes it felt like I was fighting a losing battle. It wasn’t until after Easter Sunday that I went in to get my blood drawn (how stupid it is to think it took me so long… Please don’t ever delay something that could save your life the way I did, how foolish was I?) and the results were beyond worrisome. The next day I was rushed to the ER and they ran about 500 tests, but I wasn’t scared. It really baffles me how calm I was in the face of all the bad things that were happening. My family, on the other hand, was devastated and it showed. I was probably numb to the whole thing. I remember laughing and joking and doing all these things that just weren’t normal in my condition. When the day came to an end, with tons of painful procedures like draining my knee and having people poke around my tender belly, I came out of the hospital with a preliminary Crohn’s diagnosis. And the rest, as they say, is history.

“Don’t forget you’re human. It’s okay to have a meltdown. Just don’t unpack and live there. Cry it out and then refocus on where you are headed.”

To be honest with you, I don’t think my world is caving in just because I have more hurdles to overcome than the next person. If anything, I feel blessed that I’m not going through some other things that are much worse than my current situation. I’ve learnt to make the most of it, even becoming so much more active than I was before by finding a tremendous love for exercise and my gym crew. It’s all about perspective, a positive attitude and the support from all the people I love and hold dear and near to my heart. I couldn’t do half the things I’ve done thus far without their unconditional love, support and understanding. I don’t publicize my disease; before now, I think I could count on my two hands the amount of people that know what I’m going through. Not because I’m scared of what other people may or may not think, but because my disease is mine and mine alone and I don’t need other people’s pity and sad puppy eyes just because my intestines are cooler than yours. Seriously, y’all deal with your jealousy by yourselves. Ain’t nobody got time for that!! #UniqueIsAwesome #YourBlandIntestinesAreJealous #DealWithIt

“I am learning to trust the journey, even when I do not understand it.”

Okay, I’m obviously joking, but I think you really have to turn your frown upside down, making lemonade with whatever lemons life throws your way. She’s not always going to throw clean, pristine and beautifully yellow lemons at you, is she? So what if Miss Life got a little confused when putting my DNA together and threw in some faulty, messy lemons onto my intestines. I can still make tasty lemonade with them! Uh… okay, stop. Ew. This analogy isn’t working out too well, but I think you catch my drift, right? I mean, not to say living with Crohn's is a walk in the park, because it's clearly not. It puts a damper on your life for sure, you're not oblivious to the disease that, every now and again, bubbles up to the surface and reminds you it's here to stay. There's no cure, but there's positivity and fighting spirit instead. Yeah?

So, if you ever find yourself in a similar situation, this is my advice to you:
  • Don’t ever allow yourself to think, “Oh, it’s nothing! This will pass. I don’t need any doctor’s advice.” Trust your gut on this one. If you feel like death and sicker than sick, maybe it’s a good indicator that you are, in fact, sick. Who would’ve thought, huh?
  • Don’t mistake yourself for a doctor and don’t trust medical advice from people around you who aren’t doctors either. Did we go to medical school for half our lives? No. Do we know what we’re talking about? No, we do not. Go. See. A. Doctor.
  • Don’t hide your pain. I did this all the time and, in the end, I kept wishing I had just yelled out my pain earlier. You don’t have to be Hulk or Ironman. You’re a human being. You’re genetically programmed to feel pain. You have a God given right to manifest said pain (read: there’s a difference between manifesting pain and whining).
  • Don’t let yourself get sucked into the huge abyss of negativity. Yes, we have Crohn’s. Yes, it’s a chronic disease that will stick with us forever. No, we are not dying. No, our life isn’t over. We can live a completely normal life. We are not inferior, unhappier, less than anyone else. We are equal, and we are even more awesome because we are soldiers, fighters and cooler people in general.
  • Exercise. Be active. Have faith. Stay calm. Find things you love and do them. Acknowledge the fact our time here is limited and we mustn’t spend it frowning or stressing. Be positive! We are stronger than we believe and we find strength in places we had no idea we could even reach. Everything – and I mean everything! – will work out in the end. We can overcome anything.
I’m writing this to you in the middle of a particularly bad flare up, triggered by my biggest nemesis, good old stress. I’m bed ridden with inflamed joints and unable to work out – also known as my personal hell, if you’re curious. BUT, no matter how dark the situation may be, everything will settle down and work itself out. I hope you take comfort in my experience, and I know that whatever you’re going through will work itself out too. Hey, that rhymes!

Comments

  1. You know what? I am so damn glad I've been getting on the blogging bandwagon, because of posts like this. Don't get me wrong, I love the whole fashion thing and it is a great outlet for me for more reasons than I'll bother to bore you with.
    ANYWHO, I totally get it. I never talk about it on my blog because I have kept it as a distraction/oasis of normalcy, but my oldest child was diagnosed with T-cell NHL, a rare childhood cancer when he was eight. It turned our world upside down. Two and a half years later, he finally finished chemo and had his port removed. Of course I am still terrified every day that the cancer will come back, but it gave all of us a new perspective on life.
    It is strange how such shit storms become some weird sort of gift. To quote one of my favorite (less than critically acclaimed) movies, Vanilla Sky, "Just remember, the sweet is never as sweet without the sour, and I know the sour."
    Sincerely, thanks for sharing.
    -L A

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    Replies
    1. Oh, dear... :( I totally understand you. I want something deeper than the superficiality of fashion sometimes. And ugh, your story tears my heart apart inside. The way the world sort of tests our strength in ways we don't really understand. Sometimes we just want to look upwards to the sky and ask why!? But, rest assured, we ARE strong enough to live through it and survive the hurdles and come out stronger for it. THAT I'm sure of. Sending tight, tight, tight virtual hugs to you, darling, and this too shall pass. <3

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