Unsure about Future

[MD84]

First time poster, long time viewer....

I have CD, diagnosed in August 04, and 22 years old. I am about a year away from graduating college. Despite a few hospitalizations and drugs that make you crazy (pred...arghhh), I have managed to make it through school quite successfully, hold down a job (part and full time), and even volunteer.

I have to admit, at this stage in my life I am not a severe case of CD. I'd classify it as mild to medium case. My GI described me as a patient with a "smoldering" type IBD, in other words, I'm able to stay active but my CD maintains an underlying presence. Mostly I manage my flare-ups through Pred and Colazal. I've tried Imuran, but quit after some complications (and the side affects didn't agree with me either). My GI wants me to go back on Imuran.

When I am in remission, I tend to be a focused person who wants to get things done/accomplished. I do balance with healthy doses of "laziness" which is probably just unwinding from fatigue, etc. I have a tendency to go and go, until I crash due to a stress trigger. Once I do get really sick, I go through real mental depression and start to take stock in what my limitations are b/c of the disease. For example, I would like to spend some time out of the US after I graduate, maybe through grad school or teaching English which requires a year commitment. When in remission, this seems totally doable, when I am sick I feel like dreams like that are out of my reach. Not only that, but I feel that instead of getting to explore life after college or pursuing a career I really desire, I have to run out and get a job with health benefits because I'll no longer be insured under my parents. Right now, I pay for my own med bills outside of insurance, including the ones from my original hospitalization when I wasn't insured. I have carried my own insurance in the past so I know how much of a financial burden it can all be. Don't you just love the American healthcare system!!

I don't know others feel about issues like this. For a young person starting out in the world, its very disheartening to feel like you've got the cards stacked against you in terms of your possiblities in life, especially when you're a person who doesn't like to hear the word "no." I've already seen others on the forum struggle with maintaining jobs because of their illness and discrimination from employers.

So after that book, what are other opinion or thoughts regarding my concerns about life goals/job? Also, what is the protocol in letting an employer know you have a medical condition? In the interview, after you get the job, when you get sick? I need some encouragement wherever I can get it.

Thanks...

 

[D Bergy]

Your medical conditions are your business and you are protected by the HIPAA regulations regarding protected health information. You have no obligation to reveal them to any prospective employer.

Of course, at some point you will probably have to tell them you have a medical condition if you miss work. They certainly can get rid of you for any number of reasons without mentioning your medical conditions. But, if you can do the work it should work out fine.

D Bergy

 

[ruthymg]

Its entirely up to you.. I can't say which will be better, staying where you are and never having tried to fulfill your dreams or trying and failing. I have been in a similar situation to you and have followed some of my dreams but at the moment I am unable to continue. I've got to the stage where I know that stress in whatever form will flare up my crohns and so I now try to avoid it like the plague. Its fair to say also, that the stress I usually get is caused by other peoples insensitivity to my condition, I think we all have problems trying to make people understand the seriousness of crohns. Don't get me wrong, I'm not saying this is what you should do, you just need to know your limits, how much stress can you deal with? I hope things work out for you.


Ruth

 

[Jeff D.]

Welcome to the forum. When you start to get depressed do something you wouldn't normally do. I found out that it helps me out so maybe it will help you. Or maybe go see a psychologist. I have been depressed for a while and although my psych didn't do much for me because of my parents who are not able to understand that I have depression as well as anxiety which pisses me off but try as many options.

Only you can decide your future so good luck.

 

[Cara Fusinato]

I felt the same way when I was diagnosed. I felt like "Oh man, I have A LOT of years left to wade through without them carving me up." It really was my first thought. A year later, I am hanging on, pretty darned stable, but yes, I have a lot of years to go.

I didn't tell my employer about it for a couple months, then I mentioned it. I haven't missed any work, but my boss makes some comments about how I am not exactly living up to my hiring. Funny, since I haven't missed a minute or even been in the r.r. too often or anything. I am currently studying Medical Transcription so I can work at home (lucky to have insurance through the husband, though).

Welcome and feel free to lean on all of us.

 

[Kev]

Hmm, a case of the devil you know Vs the one you don't. Maybe some would class me a pessimist, others an idealist, maybe a few even a realist. What is my point? I have lived longer than you, but I recall when I thought pretty much the way you do. I thought that life could be planned, that you needed to see all of the stepping stones and potential hazards ahead of you in life's path. It just never really works out that way.. life is just totally unpredictable. Can one have plans? You bet. Can one dream? Another big YES. Are any of those guarranteed to any of us, sick or not. No! A friend of the family went to the hospital recently suffering from severe leg cramps.. Diagnosis? Liver failure.. Prognosis? Less than three months to live. Reality? Died in less than 3 days! No second chances, no do-overs, no options!!! You got dreams? Go for them. You got goals? Take your best shot. Live the life you got to the best you can, cause it's the only one you're ever going to get. That is the simple truth, the undeniable reality. You health plays havoc with your plans, those are the cards you were dealt. Life isn't fair, just, or any other of the notions we seem to take for granted.. True. But if you get the opportunity to do some of the things you want to do, to shoot for some of those goals, don't sit back & wait for the 'best' time, the 'perfect' opportunity, CAUSE you just might NEVER get it. It is better to have tried and failed (and failure isn't a certainty) than never to have tried at all. You HAVE to be on your side, not be another roadblock or obstacle in your path. You miss a stepping stone, you get your feet wet, you can still make it to the other side. You fall into a beartrap, you pick yourself up, dig yourself out, and start back down that path.. You lose sight of the path, then you backtrack till you re-gain your bearing, or you opt to follow a totally new path you never knew was available to you before. I NEVER foresaw that path that I lived in life so far, it certainly careened far off the course I'd set for myself. But I loved the journey so far (weellllll, except for the whole IBD detour), and I wouldn't have changed it for the world. Life isn't scripted, this isn't a dress rehearsal, don't wait for a cue, OK?

 

[ruthymg]

well said Kev


Ruth

 

[MD84]

Thanks everyone for your good words. Like I said, when I am in remission, everything in life seems attainable. When I get sick, its like bursting bubbles. Its a hard reality check and I really start to doubt my possibilities. I also tend to get scared that if I travel outside of my comfort zone and get sick, who will help me out? I may be living in a city I don't want to be, but at least I have a support system around me.

But I think I should be living life anyway. There aren't any second chances.

Thanks again and God Bless...