chronic inflammatory disease

Nothing compares to the pain of knowing that you’re not going to get better again.

Loosing your health is really hard to deal with but you’ve got to keep pushing on.

The strongest people in the world have a chronic illness.

Yes, I have a chronic illness.

No, you cannot tell me your medical opinion. 

No, I definitely DON’T care what your cousin’s brother’s wife’s landlord did to cure it. 

No, I don’t want to hear about your miracle cure.

No, you can’t ask me what medications I’m on.

No, I won’t stop taking my medications because you said I should. 

No, you can’t take/touch/play with my mobility aids or pain management tools. 

And yes, I am just strong enough to hit you.

Having a chronic illness means having some extra “firsts” in a relationship:

The first time your partner sees you take meds, or the first time they see you give yourself injections. The first blood draw or IV setup. The first ER trip. The first time accompanying you to the doctor. The first medical procedure, and maybe the prep for that procedure. The first time they will have to assume responsibility for you after pain meds or sedation. The first surgery. The first recovery room. The first infusion or treatment. The first hospital stay. And the knowledge that these are firsts but they will happen many more times.

Not everyone can deal with all of this, be they a partner or just a friend. Some of us even have parents who can’t handle it, or don’t believe it.

I am so lucky to have found someone who has gone through all of these things with me effortlessly, and will be there for much more. And I’m lucky to have friends who “get” it.

I have to go through this, but I don’t have to do it alone.

(I posted this on Medium in case anyone wants to share it outside of Tumblr.)

huffingtonpost.com
Chemotherapy Isn't Only for Cancer Patients
Upon hearing the word 'chemotherapy,' most people jump to the same conclusions, with the same general consensus on how chemo works, who receives it and what side effects it has on the body. The truth is chemotherapy isn't only for cancer patients, and affects each patient differently depending on how it is used.

A great wee article. I have had to take chemotherapy drugs to treat my Crohn’s and so have many other Crohn’s warriors

2

Today was one of the most joyful days of my life - my big brother, who happens to also be one of my best friends - married the love of his life.

Yet, it felt as if I was two different people experiencing it.

I chatted and drank mimosas with the bridesmaids while having my hair and makeup done. Yet, sitting still in the chair while having my hair done left my hips in throbbing pain.

I joined the groomsmen for a drink and pictures at a bar, yet I could already feel my legs becoming shaky and unstable… Hours before the wedding.

I went with my brother to the “reveal” - when he would first see his bride- and held his letter to her for him, but I ended up missing the moment and the following photos with the full wedding party because they were on a bridge across the park. There was no way to get a car close and I knew that if I tried walking through the grass and up and down the hills to get there my legs would likely not get me back.

I sat for pictures with the bride and groom, my family, and the groomsmen behind the venue while waiting for everyone to take their seats, and the groomsmen continually fanned me to keep me from overheating while I had to guzzle water to keep from becoming dehydrated.

I stood behind my brother as his Best Man while he said “I Do” and I handed him the ring to seal his marriage, but I could only half listen to the ceremony because in my mind I was cycling through my internal checklist: was I too hot? Was I feeling dizzy? Can I continue standing or do I need to sit? Do I need a bathroom? Do I need to drink? And over and over and over.

I ate cake and danced with the bridal party and I ended up sitting between my parents with a sweater hiding the back of my dress so that no one could see that I had to unzip it because my abdomen was beginning to bloat with pain and I could no longer take a deep breath.

I congratulated the bride and groom and was one of the first ones to leave the reception, because I knew that any minute my legs were going to give out.

I left with a smile on my face and as soon as I closed the door to my room I collapsed into sobs.

This is what it is to have an invisible illness. To smile on the outside while you’re broken on the inside.
This is what it is to live torn between your life and your body.
This is what it is to have your illness continue to take away from you when you think you have nothing left to give, until you feel like you are slowly going to waste away into nothing. To fade into the background of your own life.

People tell me that I’m so strong and so brave. I’m such an inspiration. Look at me- finished school, already have a job lined up, graduated and a week later standing up beside my brother as he marries the love of his life.

I don’t feel so strong when I’m alone in my bed, crying myself to sleep.

Crohn’s disease casts a shadow over every accomplishment. It’s taunting me from the back of my mind during every happy moment. It takes everything I have to keep it from taking my life from me, but as the days turn to weeks, the weeks to months, and months to years…. It wears on me more and more. Every day I am a little more tired. Every day I wonder how much longer until I finally break.

When you’re nauseous after every meal and put huge effort in eating normal - people: “Can’t be that serious. Just push yourself a little harder to eat more…”

When other people are nauseous one time in ten years: “Oh I can’t eat anything else today. That’s the worst. I can never eat that thing (that made me feel that way) again.”
- me: “Welcome to my life!”

Crohn’s Disease is not something you win against or something you beat. You can go into remission at times. You can make it through a flareup to the other side. You can have phases where you only have to see your doctor every few months instead of every couple of weeks. But Crohn’s is always there, hanging over you like an oppressive cloud. A cloud that you completely dread, but one that feels uncomfortably familiar at the same time.

That unsettling familiarity comes from the fact that Crohn’s is with you at all times, no matter how hard you work to control it. You can have the cleanest diet in the world and the strongest medicine possible for your body (Remicade or Prednisone or Humira or an infinite number of others), but Crohn’s doesn’t ever fully go away. You can keep it at bay. You can feel better than you have in years. But it’s still always right there, ready to pounce at any moment.

It’s especially noticeable in the big moments, even if you feel that you’re at your healthiest. The minute you plan a vacation, or get on a plane, or are offered a new job, it slinks into the room as a dark shadow that cannot be ignored. You’re imagining every possible circumstance, wondering what you could possibly do if your body decides to act up. And the answer is usually: nothing.

And even in the not-so-big moments, when you’re trying to relax on a Saturday or are just showing up at work for another ‘ordinary’ day, it can show up. And it’s isolating and exhausting and nerve-wracking. You’re out of the moment – just counting down the hours until you can go home and lay in your bed, or spending your Saturday evening wracking your brain for what you could have possibly eaten that destroyed your stomach today.

But as loud as Crohn’s is to you, it’s a fairly quiet disease to everyone else. The symptoms aren’t stereotypically visible, besides – possibly – fatigue. Even if you have scars, or a bag, from a surgery, they’re mostly hidden, seen only by the people closest to you. That makes your situation hard to explain, hard to relate to, and hard to translate to a person who has a clean bill of health.

So when these things happen (mostly regularly), it’s tempting to let Crohn’s turn you into someone ugly. It’s frustrating when doctors ask you to rate your health on a scale of 1 to 10, because you can’t really remember what ‘normal’ is supposed to feel like; your ‘normal’ is not everyone else’s normal. So it feels good to get angry, and to feel bad for yourself. It’s easy to let yourself sleep all day every day. It’s just simpler to give in to your situation and let it become who you are, rather than looking at it as just one aspect of you.

But even if you don’t believe that everything happens for a reason, even if you don’t believe in God or any sort of higher being, you can still take power from your situation. You can look at the way it’s affected your life and the perspective that it’s given you, and refuse to let it be something that’s only impacted you in a negative way.

Would you change it if you could? Of course you would. You would get rid of this thing faster than you can say ‘colon.’ But because you can’t (at least for now – come on, Science!), you can find power in other ways. The ability to control your body is out of the question, but what you can do is learn to appreciate the mindset you’ve developed from having a chronic illness.

Sure, you’re tired a lot. And angry, and worried, and jealous of those whose bodies can do what yours can’t. But you’re also probably tough. You’ve been in a lot of pain before and you’ve gotten through it. You’ve learned that if you want something, you have to be the one to make it happen, because there will be a million things trying to prevent you from getting it.

You appreciate your good health when you have it. You can see most days as beautiful even when they’re rainy or stormy or freezing, because feeling well enough to leave the house is all you need for a day to be considered lovely.

You probably find it easier to relate to others who are suffering – even if their version of suffering has nothing to do with what you yourself have been through. You have probably found a deeper sense of empathy, because nothing helped you more in your darker days than someone who made you feel less alone – even if they didn’t understand in detail what you were going through.

You don’t have to believe that you have this illness because it was ‘meant to be.’ You don’t have to believe that it happened for a reason – that it was the will of God or the universe or any other being. Regardless of your spiritual beliefs or lack thereof, you have the power in this situation – not to cure yourself, but to give your illness meaning. To take advantage of the perspective that healthy people don’t have. To appreciate the lens through which you look at the world – the one that causes you to be more tough and determined and curious and kind and awake.

When I was debating trying Remicade, a friend with Crohn’s said, “It helps a lot. You’ll look around and think ‘this is how normal people feel all of the time!‘” He was right in one sense. After a few infusions, I was feeling better than I had in a while; I felt almost as good as a normal person (though the effects have lessened since I started).

But here’s the thing. I don’t think anyone is actually ‘normal.’ We all have unique perspectives because we’ve all been through something or a lot of things. We’ve all suffered in one way or another. We’re all strong in different ways. It’s whether or not you choose to finding meaning within your suffering that sets you apart.

Crohn’s is your thing. Crohn’s is your outlook. And you can let it control you, or you can make damn sure that the pain you feel only makes your world more lovely.