sunshinebluesky

someone can offer some ideas...................................i may have even wrote about this on here a long long time ago,but here goes.......i have a son who has crohns disease. he has been having problems for the past eight years...in the er,in the hospital,numerous docs etc....one doc said he had it..another one a couple years later said he didnt....now after being in the hospital again,this one says he does. here is the problem,and maybe some of you know of others with chronic health problems and can give some advice.....he will go a few months feeling fine,and then have a bad episode...lasting anywhere from a few days to a few weeks...consequently,he loses time from work and ends up losing jobs. hes thinkin maybe if he can get a less physical job,he will do alright,but im just not sure...i mean if he continues like this,its still gonna be the same thing. i have thought of the perm disability thing,which sucks because if you can get on it,you dont get much to live on..and the ironic thing is like most goverment things,you cant work at all. its just so frustrating for him, it stresses him out and it stresses me out,worrying how he is going to live his life. i have offered him to come here and see what we can do...see how long he can go before the next attack...and if need be,try to get on the disibility and live with me...............what are people suppose to do when they have situations like this? any ideas? i also have thrown out the idea to him of maybe starting a small business of his own. any suggestins would be appreciated,or stories of people you know who have dealt with living life with a chronic disease when there is no other person with them with income.

mallowcup

I think your son is on the right track. Stress makes the exacerbations worse and prolonged. A small business of his own would be good except it might be stressful too. I was wondering is he has any particular interests. What I'm thinking would be best is a situation where he could work at home. I have had alot of people ask me manage their ebay sales, putting things on auction, like that. He could learn to create websites. A friend of mine has a little one at home and needed a carreer change so she could work from home, she took a course on billing and coding that was offered at a local votech, now she can work from home. Is he into baseball card trading, is he artistic, how about jewelry making? You get the idea, things he can do when he feels good and something that won't fall apart when he needs a day or two to himself.
Does he like to cook or bake? The votech also offers classes in cake decorating and I will say I was HORRIFIED to find out how much peope are paying for a wedding cake. Some of these things might be things you could do together. I would chart his exacerbations to look for patterns and things that might be aggravating the onsets. I think there is a world of great things he could do, you just have to think outside the box.

DesertEyes

Hey there sunshine,

I'm so sorry about the hardship your son is going thru. I have a chronic heart condition called "cardiac neuropathy" so I understand a bit about the frustration he is feeling.

The first thing I recommend is to get on the web and find support groups for people with his particular condition. I found such a group for me and they have been wonderful.

Next is to understand the differences between _federal_ disability and _state_ disability. Most states are far more lenient in giving somebody the status of "disabled" person. With that "status" it then becomes much easier to get a state job that allows for the sick time. I currently am on the state list where I live for such a job, although my current job is very low stress and I might keep it for a while.

The various disability programs don't _prevent_ you from working. They just don't pay while you are. This is where a web support group can be a huge help in showing you exactly how his specific condition is handled by different disability programs.

It's a lot of work to look this all up on the web, but it's definetly worth it in the long run.

I'm praying for your son and for you.

Mike

mallowcup

Maybe the application for a disability check could lead to some ass't with retraining for a job he could do. Being declared disabled may also lead to other ass't or benefits.

SuzieQ74

Hi There,

I'm sorry your son is going through this. I don't have any suggestions on the financial end of things, however, i do know how Crohn's can affect a person. I have lived with Crohn's for the past 12 years and my sister has lived with it for about 7 years.

I have my bad days as well, but I have learned that I have to live by a very strict diet. I have also learned how to control the stress in my life, seeing that also causes a flare up. I have been able to control it to the point where medication is no longer needed.

My sister on the other hand had to have surgery to remove part of her small intestine. Since her surgery, 2 years ago, she's been great. she also has to live by a strict diet, but also takes medication.

Maybe your son should see a specialist. Like my sister, he may need surgery to remove part of the intestine that is causing the problem.

Just my thoughts...just tell your son, that he can live with this disease, it is possible. Don't give up!!!

Hope things get better for him soon!!!