Yesterday at school I seriously got told that having (potentially in my case) Crohn's wasn't THAT bad. Um what? Excuse me? Did I hear you right? I was in complete shock. Please keep in mind this individual does not have Crohn's. I told this individual while yes there were worse things, Crohn's was definitely not anywhere near the top of my awesome list. This individual then proceed to tell me why she is an expert in all things related to Crohn's. You wanna know why she is an expert? Because her friend is dating someone with Crohn's. Her extent of knowledge was that this friends boyfriend farts uncontrollably because of Crohn's and it put a strain on their relationship. Sweetheart there is a lot more to Crohn's than farting and the bathroom. I realize this is going to become the norm of what people say to me when they find out, if they ever do. People don't understand, and frankly most of them really don't care to understand. And anyway they will never truly understand unless they personally have an IBD. No matter how far society comes, I believe, those who suffer from any disease are treated more like they are the disease, not that they are a person who happens to have a disease. If you really want to help someone, don't play doctor, chances are they want someone to just listen to them and feel valued as a person, not a disease.
Friday, August 29, 2014
Thursday, August 28, 2014
I'm a Christian. Yet I still question God. My disease may not be as deadly as others, but to tell you the truth it has completely altered my life. Before Crohn's I was a happy upbeat person who loved to play practical jokes on people and make others laugh. Now most days I don't have the energy it takes to still be happy and upbeat. I would rather spend my energy doing more basic things that are necessary for life. When I first got sick I could hardly take a shower, once I was done I was pooped. How is that fair? To me, to those I know? How could they ever treat me "normally" when I can't act "normally"? I realize I already have a post on fairness and I'm not going to dwell on it in this post. It frustrates me when people take their health for granted, I'll admit it, I did too. I never in a million years thought I would ever EVER get a chronic disease, I figured best case scenario I'd end up with breast cancer. I question God about why I, a 20 something, would get a disease that will forever be a part of my life until they find a cure. All I ever wanted in life was to be happy. But being happy is a choice and that choice is a lot harder to make every single day. Sometimes I make the choice, other days I don't. The whole question of "Why does God let bad things happen to good people?" comes to mind as I type this. The answer is simple, hard to swallow, yet ever so simple. We aren't good people. Well at least I'm not. I mean I haven't killed anyone, but I can be mean and crabby and a jerk. Sometimes I'm not nice to others. I sin, I'm very prideful. I'm not sure how to end this because lets be honest, conclusions aren't my strong point. But in summation I know that God has a plan for me and all the these hardships and diseases will ultimately lead to something beautiful. I can't see the big picture all I can see is the itsy bitsy piece of the puzzle that I'm holding. Things will get better and they will get worse, that is ultimately a fact of life everyone will have to face. Maybe not to certain extremes as others. That is all.
Tuesday, August 26, 2014
I don't know about you but every. single. time. someone asks me what I have and I say that I more than likely have Crohn's disease, I have to explain what it is. Like the weekend I went away I was tempted to bring along a bunch of pamphlets so I could save my breath. Why isn't Crohn's disease as talked about as many other diseases? Because its an invisible disease? Well actually it isn't for everyone. Why? I think Crohn's disease and Ulcerative Colitis are just as important and life altering as all the other highly publicized diseases. I was scrolling through CCFA (Crohn's and Colitis Foundation of America) and I saw someone had posted a video similar to the extremely popular ice bucket challenge, except it was the lego bucket challenge. The person who accepts the challenge has to walk across a line of legos. Feel the pain to end the pain.
I thought this pictures was fairly accurate haha :)
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| Found this here |
Saturday, August 23, 2014
The trip went okay, for the most part. Because I'm a nervous person and my nervousness makes me physically ill, I had to be extremely careful of what I ate on the trip. Saturday night after the wedding was the worst because there was a lot of rich food though, I did well on not over eating. But overall I was extremely tired, which makes everything worse. Haha.
On Thursday (8/22) I had another follow up doctor appointment. Basically it was more for if the Pentasa was not helping. But since it is (!!) I don't have to go on steroids! Yay!! I mean I'm not completely healed but I have way more good days than bad days, which makes me extremely happy :). While I was at the doctor I was informed that I would definitely maybe have to have another Colonoscopy which seriously sucks. But that procedure is mostly to make sure that everything looks more healed and they are going to re-biopsy everything and blah blah blah. Oh and I was given the outline for the low FODMAPs diet, mostly so that if I wanted to try it I could but its not required since I have been feeling better and I've already identified most of the foods I cannot eat. I believe that is all? Till next time :)
Jenny
On Thursday (8/22) I had another follow up doctor appointment. Basically it was more for if the Pentasa was not helping. But since it is (!!) I don't have to go on steroids! Yay!! I mean I'm not completely healed but I have way more good days than bad days, which makes me extremely happy :). While I was at the doctor I was informed that I would definitely maybe have to have another Colonoscopy which seriously sucks. But that procedure is mostly to make sure that everything looks more healed and they are going to re-biopsy everything and blah blah blah. Oh and I was given the outline for the low FODMAPs diet, mostly so that if I wanted to try it I could but its not required since I have been feeling better and I've already identified most of the foods I cannot eat. I believe that is all? Till next time :)
Jenny
Thursday, August 14, 2014
Sometimes, like right now, I feel brittle. Like my bones are about to crumble, my hair is about to fall out. I sometimes get puss pockets in my throat, like when you get strep. I only get one and it goes away before the day is done. Is there a correlation between the puss pockets and feeling terrible? Once towards the beginning of this whole ordeal I created a hypothesis that as lack of sleep increases (so the number of hours of sleep you get decreases, measured by the average amount minus the actual amount (i.e. 10 hours minus 3 hours would be 7 hours of sleep you normally get but did not)) the amount of symptoms increases (measured on a pain scale of 1 to 10) So I only got 4 hours of sleep last night but I normally get 8 hours, my lack of sleep number would be 4. My pain today has been around a 4 when its been bad. Which yeah it's less confusing when it is all graphed out. But basically it in theory should be a perfect +1 positive correlational graph.
The other day I was scrolling through my facebook feed and I found an interesting/relevant blog post about living with a chronic illness. The woman who wrote it writes about herself and having rheumatoid arthritis. I will link to the post here. I really like how she describes (as the title suggests) that chronic is really just a polite way of saying incurable. Like rheumatoid arthritis Crohn's disease isn't one that is seen so much on the outside and people don't understand why, yes doing hardly anything can make one so exhausted. Today I was almost, almost treated like normal. I got asked how my tummy was by my boss. Yes she was well intentioned but she knows its not my tummy. I simply smiled and said it's been feeling a lot better as compared to the last few months. Whatever. BUT that was the only time I got asked. Though I'm apprehensive about this weekend because this will be the first time I've traveled since becoming ill. Please pray for me that the 6/7 hour car ride won't be too bad both ways and that we make it safe.
Jen
The other day I was scrolling through my facebook feed and I found an interesting/relevant blog post about living with a chronic illness. The woman who wrote it writes about herself and having rheumatoid arthritis. I will link to the post here. I really like how she describes (as the title suggests) that chronic is really just a polite way of saying incurable. Like rheumatoid arthritis Crohn's disease isn't one that is seen so much on the outside and people don't understand why, yes doing hardly anything can make one so exhausted. Today I was almost, almost treated like normal. I got asked how my tummy was by my boss. Yes she was well intentioned but she knows its not my tummy. I simply smiled and said it's been feeling a lot better as compared to the last few months. Whatever. BUT that was the only time I got asked. Though I'm apprehensive about this weekend because this will be the first time I've traveled since becoming ill. Please pray for me that the 6/7 hour car ride won't be too bad both ways and that we make it safe.
Jen
Friday, August 8, 2014
Yesterday I was so frustrated with everyone and everything. I want people to treat me normal, I want to act normal, I want to feel normal. But they can't and I can't. At least not right now. I know life isn't fair, I've said it hundreds of thousands of times to kids over petty, who gets to be in the front of the line, stuff.
I know life isn't fair, yet for some reason I still expect life to be fair.
I know life isn't fair, but I try to be a person why is this happening?
I know life isn't fair, but why me?
I know life isn't fair, but some people are worse off than me.
I know life isn't fair, but there is a God who loves me and you who let his Son die for us.
Last night my dad asked me if I ever thought this was all unfair, and he said if I answered that no I hadn't thought that that I was lying because he would be wondering that. I hesitated and said that yes I did think that but that I was extremely blessed even through this because I don't have ulcers, I can eat most foods, I don't have a colostomy/iliostomy.
As John Piper said "Suffering is not only the price you will have to pay in the pathway of obedience sustained by joy in God, suffering is also designed by God to intensify your joy in Him." I went through life thinking I was invincible and that was foolish of me. Now, I'm not saying I partook in reckless behaviors, but I wasn't truly counting the blessing that is living. The 12th of August marks my sixth month of being sick.
I know life isn't fair, yet for some reason I still expect life to be fair.
I know life isn't fair, but I try to be a person why is this happening?
I know life isn't fair, but why me?
I know life isn't fair, but some people are worse off than me.
I know life isn't fair, but there is a God who loves me and you who let his Son die for us.
Last night my dad asked me if I ever thought this was all unfair, and he said if I answered that no I hadn't thought that that I was lying because he would be wondering that. I hesitated and said that yes I did think that but that I was extremely blessed even through this because I don't have ulcers, I can eat most foods, I don't have a colostomy/iliostomy.
As John Piper said "Suffering is not only the price you will have to pay in the pathway of obedience sustained by joy in God, suffering is also designed by God to intensify your joy in Him." I went through life thinking I was invincible and that was foolish of me. Now, I'm not saying I partook in reckless behaviors, but I wasn't truly counting the blessing that is living. The 12th of August marks my sixth month of being sick.