Need advice...what would u do?

[ashleymc_38]

I recently just got diagnosed with Crohn's disease. Its not a life threatening thing but it is a long term deal that I have to face for the rest of my life. I recently don't have insurance and my dad found an article in the newspaper about one of the top doctors here in MI doing a clinical research study for people who have the disease. So my dad made me an appointment for this doctor to see what this "research" project was all about. Its a 54 week long study that I would have to attend to every 2 to 4 weeks to recieve injections, give out blood samples and every thing in between. It seems so tedious of a thing I just don't know if I should participate or not. My dad seems more into than I do and I feel as though if I don't participate with the trial I'm never ever going to hear the end of it from him. I feel like I would do this just to please him. The medications that I am currently on are outragously expensive. Just one pill for one type of medication is 12 bucks and with me having to take that one at least 8 times a day, it can rack up quite an expense. Having no insurance is one of the suckest things ever but this research study also seems not to be the grandest idea to me either. The program is only going to last a year so really I would only be getting one year of help out of the who knows how many years of my life I'll live to have to with this disease so I really dont know if its worth it.....I"m just so confused.What would you do?

[rebbierae]

Hey Ashley, I'm very sorry to hear that. Even if it isn't life threatening, it's still something that is probably going to change your life. I've learned over the years--and my Dad wrote in a photography book he gave me, that you need to do things to make YOURSELF happy, not to make your parents--or anyone else in your life, for that matter--happy. So if you truly don't want to do the study, don't do it just to make your father happy. Other than that, I wish I knew what to tell you. It is RESEARCH, so it may or may not help. It might be worth the shot, since it is free, but it will also take some time and effort for you, and you need to decide if it is worth that. I wish I knew what else to tell you. All I can say is stand up for yourself and do what YOU think is right--in the long run I would think your Dad would respect you for that. Good luck and keep us posted! We'll be thinking of you!

[AKLGT]

a good friend of mine has that. and I have Eppstein Barr... it made it good times when someone in the office got sick... no immune system for either of us and we were out for the count for a good week. I know that he struggles keeping a job down just because when it hits (not entirely positive about what it is) he just couldn't function well. Even though it is not a cure but research, I think I would at least do my best to participate. You never know if something good comes out (but then it could always be bad too). Without people willing to do the research, then modern medicine may never advance, especially regarding Crohn's Disease. What if no one ever volunteered to do the research? How would your doctor be able to hellp you later? So, you should really consider your options and what will help you in the long term. You're very young and this is going to affect you from here on out. Sometimes, not so bad, but other times not so good either. I know he struggled a lot and I worked with the guy for 4 years. good luck!

[GrayFox]

I agree with rebbie. Do what you think is best. As much as the clinical research might help it could also do nothing or possibly hurt you... but who knows? It's a gamble...If you do the research you could save alot of money, which could possibly go towards some kind of healthcare plan after your year is up (I really don't know how these things work but it's just a thought I had).Quote, originally posted by rebbierae »Good luck and keep us posted! We'll be thinking of you!

[jimincalif]

Go to the appointment with the dr, listen carefully to learn about the research project. Ask questions, take notes. Go home and think about it. Jot down followup questions that may come up. Get online and do some research yourself. Ask the doc your followup questions.Then make your decision based on what you learn and what you know about yourself. It is great to participate in research, but you are not obligated to do so. Whatever you decide, you need to take control. Take complete responsibility for yourself, what you choose to do and the possible outcomes of those decisions. I don't know much about Crohn's, but I understand it may be an auto-immune disease. Based on a family member with an auto-immune disease, your outlook and attitude are extremely important. I've seen someone diagnosed with lupus have it virtually disappear once he got his act together and took control of his life.Participating in research might be empowering, knowing that you are contributing something to the cause, even if the treatment does not directly help you. But if it is not right for you, don't do it.

[rebbierae]

I agree wholeheartedly with Jim. Definitely go and at least find out what it is all about. You can't really make an informed decision without at least knowing what the details are. I didn't mean to imply that you shouldn't. All I was saying was that you need to do what is right for YOU--don't do something just to make a parent (or anyone else) happy.

[808 Vibes]

I'm sorry you are going through this. As someone who knows how scary it is to have had no health coverage while going through a medical issue, I wish we had universal health coverage. I have coverage from my boss, but hon does not have medical. When we have a family, how am I going to afford a family medical plan?! Does your state have a program for uninsured? or clinic for the uninsured (like I had to go to before I got my medical) maybe check your phone book-you may have some resources you did not know were there. Good luck!