Change

[Bryanaa-541]

Going through all of this, there is a part of me I had to let go of. There's a part of me I had to say goodbye to. I don't think I've really said goodbye yet. When I first got sick, I felt insecure, alone and detached. I still feel that way, maybe its not as extreme or maybe it has been buried by my subconscious so that I could focus on things that needed to be dealt with at the time. I feel like I lost my best friend because of all that time I had to take away for myself and I feel like nobody understands me. I want someone to be close to. But my personal life is still a mess and needs to be worked out before I get into anything serious with anyone in any way. I don't feel like myself anymore. It doesn't matter if I'm ready to say goodbye to the person I was before this happened because that part of me is already gone. And I'm holding onto it.
When I came back to school, everything changed.
It hurts because its a lot to take in all at once, and it hurts because I didn't want it to happen like this. I chose to believe I was done with the hardest part of Crohn's, but I will never be done. I chose to believe this because there are psychological problems that I'm not even aware of but am trying to avoid. I'm trying so hard to avoid it, I'm tucking it away into the back of my mind.

When I was diagnosed I didn't want it to affect me as negatively as it affects most people, I tried to accept it right off the bat. But then I learned, some things aren't meant to be accepted without understanding.
Lately I've been thinking about past experiences when someone caused me pain, and left me without closure. All this time I thought it was simply because I still want the closure I've been deprived of. While this is what I want, its not closure from those people, not even closure from those situations. I want closure from myself. I need to say goodbye to the Kaylah that was in love, that loved junk food. I need to say goodbye to the Kaylah that ignored the bad only to see the good, because that's what always got me into trouble in the past. I'm no longer the person I thought I was. I could blame getting Crohn's disease, I could blame my last relationship and I could blame the schedule change at school. It doesn't matter where the blame lies, fate led me here. I was going to change. I know that this disease isn't going anywhere, I know that it has the potential to swoop in and change my life again. I have had to change my lifestyle for it. Even if there was a cure it would never really be gone. Because pain this deep leaves scars. And, sure maybe you're no longer wounded, maybe you are stronger but that scar is a reminder that you endured all of that. You're skin will never be the same again, all because of that scar. This is just something I've been trying to fight since day one, the change. I wanted to accept the fact that I have an incurable disease so that it wouldn't bother me so much, but its bothering me now. I wanted to avoid taking steroids because that meant the disease is moderate and more serious than initially expected. I didn't want to watch the steroids morph my body and mind into something its not. I tried to fight off all of that just so I could hold onto the shell of who I was. Mentally, I was still the disease free version of myself. But what I need is to really accept that I'm not the same person anymore, I can't keep hiding and I can't keep pretending I'm fine when I'm not. I'm not close with my best friend anymore, and I am not in a committed relationship with anyone.

I would like to take this time in advance to say thank you so much for your support. It is greatly appreciated. Without this forum I would feel so much more alone and insecure. You guys give me hope.

 

[Wallace]

Crohn's is really tough, and like any negative experience, it will change you. It has changed me that's for sure.

There was one story that I really like for situations like this.

There once were three pots of boiling water. A carrot was tossed into one. The carrot boiled, and boiled and boiled in the water, and it turned into mush.
An egg was thrown in to the next pot, and boiled and boiled and boiled, until it turned really hard.
Some tea leaves were thrown in to the last pot and boiled and boiled and boiled, and a pot of tea was made.

When you are thrown into boiling water, you will never come out the same. But you can chose to be like the carrot, and fall to pieces and turn into mush. or you can chose to be like the egg, and become hard and angry. Or, you can chose to be like the tea leaves. Even though you aren't the same anymore, you are not just leaves, you are now tea. You are different, but you come out better than you were before.

It sounds to me that you really want to be like the tea leaves, even though being tea isn't easy.

I've been bloated, covered and acne and while fighting insomnia from steriods, but don't worry, it doesn't last. I met my boyfriend while like that. He liked me anyway. The meds don't have to define you.

Good luck!!:hug:

 

[Bryanaa-541]

Yeah, that is a really good story. I want to be successful in life and I just don't think I should let Crohn's disease stand in my way. Thank you for the feedback. It helps

 

[LCATC945]

I agree with Wallace and her story. And I understand everything that you had to say Bryanaa. I actually was lucky enough to meet my girlfriend about a month before I started to have problems with crohn's again. I had a flare last spring and reflared (right before valentines day of course) when my doc was weening me off of prednisone. And I'm still dealing with it now. I got a little better when I got on imuran but after about 3 weeks it tanked my white blood cell count and I contracted c-diff and was hospitalized for a week. I'm still on the pain medication and I'm waiting to (reluctantly) start hurmira. I have to go through a colonoscopy Tuesday. Through all of this crap I know I have changed. I know that I'll have to change my initial plan for when I graduate just so I don't have to stress about getting back into physical shape as soon as I would have to. Taking the meds, as much as the side effects suck and complications can arise, is really the best thing to do. Jr. High when I was first diagnosed I hated takin meds and once I got feeling like myself again I'd get rid of my medication and hide it from my parents. I'd only take it when I knew my appt was coming up in case I had a blood test to check my levels. My parents found out a few times if been skipping meds. But luckily I was able to achieve remission and be off of them for 6 years. Back to the changing. I have known about this sure for years but I never visited or signed up until this year when I reflared. I signed up because I knew that I needed to find some people that were going through the same thing I am and it's helped. I don't want to lash out at my gf while I'm in pain, she's been great through all of this and it's been tough on her seeing me like this. From this situation alone I can confidently tell you that from what I've seen from her and how I feel about her I will probably marry her. (Oh and by the way if this post gets long or skips around a lot it's the pain medication I'm on at the moment sorry!!!! ) anyway. The best thing you can do is try not to close yourself off. I know it's hard to do. But really. Open up to people. I have found even another person at my college that has it because I started doing it. Knowing people outside of this forum helps a lot because you actually know the people. One thing I struggle with though...is that I feel like a burden... To my girlfriend, my family, her family, and my fraternity brothers. They care so much and yet they feel useless because they can't do anything to help me. One thing that I hate but I know where my mom is coming from when she says it is that she wishes she could take this disease from me and then I wouldn't have to go trough it she would. I tell her no. Even if it was possible I'd never let it happen. Because no one deserves this and you should never wish this on yourself. I am actually pushing myself tomorrow, probably more than I should, to be there for my girlfriends sorority formal. Before I got sick I told her I'd go. When I was in the hospital she asked me if she should take one of her friends that's a girl in my place and I told her no. I will be there no matter what. I owe her this much. I owe her a lot. She didn't have to stay with me through all this. It's a lot of stress that she could have easily walked away from esp after us only dating for a month at that point. One thing that didn't work for me though was that I've come to the pint in my life where I am an adult and my parents need to start treating me as such. When I went into the hospital they put their lives on pause and were there for almost the whole time I was. I am at college and I'm 2 hours away. They got a hotel and they told me that they would go home one day. And yet they stayed another night band then another night to the point where I had to tell them I need them to go home. Because they had been her long enough and they need to get back to work. They had been cleared by their bosses and everything but their smothering was actually preventing me from getting rest and it was stressing and angering me because they were there. All the time. I felt guilt too a lot because they had put their whole lives on pause and it looked like they were going to keep it that way till I got out...which they were making it harder to get better. They mean well but I'm in that transitional phase where I need them to figure out where I am an adult and don't need them to be with me day in and day out when I have health problems. I'm 21 years old I needed them when knead admitted and also the day after until I got a diagnosis of what was going on. Once that happened they should have gone home and back to work. Then maybe on the weekend after asking me first if I wanted any visitors. They finally went home on a Saturday but they showed up without asking me about if I felt up to it or if I was doing anything. I was facetimed in on meeting and they just walked into my hospital room. Unannounced. And I know my face turned to instant anger I told them they had to get out ones on a meeting ended up sitting in a waiting room for 3 hours and then only seeing me for a half hour. But it was their own fault. Things have gotten better. A little bit. But I know I have to be more verbal about my needs because otherwise they will smother and baby and just prevent me from getting better.

I'm going to try to remember what I just rambled about. Again I'm sorry for jumping around and the long post but to recap what I think I said. Try to be open about what you have.

 

[LCATC945]

Wow...that really was a long post I'm so sorry I feel bad now

 

[Bryanaa-541]

Oh, I appreciate it! Thank you for your input. It really does help to here from others with similar conditions, don't feel bad Where I live its very cookie-cutter. Nobody is genuine, or honest, they all live easy lives over here. So its a bit of a struggle for me right now because I've had to do a lot of hard work and nobody understands, nor do they even try to. My mom also wishes I didn't have this disease. Congratulations on your relationship! You are so lucky to have such a reliable girl friend, don't ever let her go. People like her sure are hard to find. I started a new relationship that unfortunately didn't last long because I got sick, I felt I couldn't stay in a relationship and that I needed to take care of myself. I gave blood yesterday so that they can test it for Imuran. What I find odd is that when I went in for my first colonoscopy, the results showed that I have mild to moderate Crohn's but I think its more on the side of moderate to severe because I've tried most of the stage one meds and they couldn't get me into remission and I needed a high dose of prednisone (55 mg) and I'm still bleeding. The bleeding has gone down but it hasn't stopped. I'm tapering off now, I'm on 45 mg of prednisone right now. I'm really sorry to hear about the c-diff that is really scary! I'm so glad you're doing better, though. You are so strong. Good luck with the humira, I hope you reach remission soon. And thank you so much again for your insight. It means a lot to me.

 

[Orchid]

Bryanna, change is never easy. Altering the relationship between yourself and the world out of necessity involves a change in perspective. You can never go back, but all the better, because now you can go forward. You've made an important first step in understanding how your life has changed in moving away from denial and ignorance. You should be proud.