For those who are currently flaring or have been flaring for a while...

Let's say by some magical circumstance or event, you were to go into spontaneous remission tomorrow. Symptoms disappear and it feels like you never had the disease at all.

Would you be a different person? What would you do differently? Did you have any goals that were held back by the disease (urgency, accidents, etc) but would like to accomplish now?

Thanks.

For me, a lot of my long-term commitments would come back. If I knew that I'd be in remission for years and years, then I would feel safe throwing myself back into intensive, long-term activities like jobs and applying to medical school.

During flares, I try to do what I can to at least function relatively comfortably during the day and then continue my goals on a smaller scale. Taking care of my mental health, being devoted to making positive changes in my life, learning more about things i'm interested in, and making short strides toward those long term goals i've mostly put on hold are things I try to do even during flares. Fortunately, my flares have been relatively mild compared to the ones i've heard about on this forum.

I would love to be able to go on vacations and spend long days away from home like my healthy brother can do. As things go now, I can go out and spend hours away from home, but I am still kind of dependent on living at home with my parents.

I think one of the reasons chronic disease is so impactful on people is because they can often interfere with a person's life goals. Those with chronic disease that I've seen are able to live out their life's goals and dreams are the ones who tend to have the least problems with having disease.

I would really ramp up my career, and obsess less about saving in case I get disabled.

My entire life would change.... I dont know anything that would not change.

When I reached remission, I sent out resumes and got a better, higher paying job. I stayed in the same lousy job despite being underpaid and underappreciated because I was sick and I couldn't imagine interviewing or starting something new on shakey health. Now, I work in a larger company doing the job I want for a company who appreciates me, and gives me FMLA protection and is real liberal with work-at-home, whenever I need it.

The DW and I went to Antigua for a week to celebrate us both getting new jobs, and me feeling better.

My personal opinion is that it makes more sense to not have children because of how the parent's illness would effect themselves and also an unfairness to the child to have a very sick parent who can't be 100% into their jobs as a parent, and not so much as a fear of the children actually coming down with the disease, which is really only a fairly small possibility. If a parent is in a stable remission I don't think they should let this hinder their decision as to whether or not to have children. If the parent is doing poorly it is certainly not a good time to think about having kids.

I have other crap to deal with, so I doubt I'd be a different person...it would be nice for the financial break, however.

q

Great responses. Trying to accomplish goals under extreme circumstances is incredibly difficult and very heroic. If only the veil of disease was lifted somehow.

I would leave the classroom 2-3 times during a lecture to have a BM. I had a table in the bathroom in order to do my homework while having a BM. I even kept studying while receiving IV steroids or blood transfusions at the hospital.

That's amazing.

NCOT! Could you go to this thread (if I can link it properly) and clear up the confusion about doctors in the UK?

www.healingwell.com/community/default.aspx?f=38&m=3331537

Serenity Now said...
NCOT! Could you go to this thread (if I can link it properly) and clear up the confusion about doctors in the UK?

www.healingwell.com/community/default.aspx?f=38&m=3331537

Will do <_<.

Guardian7 said...

Would you be a different person? What would you do differently? Did you have any goals that were held back by the disease (urgency, accidents, etc) but would like to accomplish now?

What about the opposite ? For example I went on a strong prednisone course of treatment and worked through the night for over a month and saved my company 7 million dollars in licensing fees by boosting the performance of the primary money making computer system due to the intense focus and long hours I was able to devote to it. A whole new group of people had been hired to build a new solution around the problem but I beat them to the punch by performance tuning the existing one.

Because prednisone converts muscle into glycogen it can fuel the brain in a way that is difficult to do without it. I am seeing Pro Cycling Pulmonologist for an iron infusion. I want to also ask him how a person can manage to grow muscle while still supplying the brain with adequate glycogen or who he can refer me to that can discuss the challenge. Because I want the effect off prednisone as much as possible.