Trying to do too much?

[akanderson]

I have a question. Since being DX my mother treats me like a fragile doll. Yes, I am in pain, a lot. It faded then came back a few weeks ago, worse as ever. But I just recently graduated with an associates. It took 3 yrs, that includes battling the mysterious now know disease, and 2 pregnancy. I want to help my fiancee. I want to have a job. I want to feel like I am worth something. I've always worked and not working, although it is rewarding to be with my kids, its hard to not help pay bills or have my own money. So,
How do you all work? can you have a office job and handle it? Or am I pushing myself too much? Everytime I start looking through jobs I start stressing and then comes the pain. A friend of my fiance said to apply for disability and I went online did the forms, need to send in other stuff I believe but honestly don't know what I am doing with that. I thought about getting a lawyer but I am nervous. But he told me my ego is getting in the way and that I need health to work. I know, I do need my health. I stress alot about not feeling like I bring anything to the table... SOrry this is long. I honestly don't know what to do.

 

[Rebecca85]

I have a part time job in a school (the same one I had prediagnosis). I did have to cut my hours back temporarily though, as I was getting ill (colds etc) on a weekly basis. So my body let me know that I was doing too much! It was hard for me to admit that I wasn't coping, I am like you, always paid my own way etc, but in the end it was the best thing to do.

I'm afraid I don't have any real advice for you, and I'm kind of rambling now (only just got up). All I can say is you need to do what's right for you, at this time.

 

[LOSTnut]

First, congrats on the degree. I got mine when I was still healthy and cannot even imagine going to school and being sick with this "shitty" disease.

Interesting observation on the stress and trying to do too much. Sometimes I feel the same way. It feels like every time I attempted to go back to work (back when I thought I still had a job) something happened ... pain, abscess, infections, you name it.
Currently, I feel a lot better and had 2 interviews last week that (hopefully) are promising .... and BINGO ... 2 days ago I started having abdominal pain again that feels a lot like developing more abscesses and/or infections. Now I am scared shitless again that my body is trying to tell me that I am not yet able to go back to work .... but I need to. Not only because of financial need but also desperately needing a job that offers health insurance.

Ugh, I guess this doesn't really offer helpful advise and I am sorry for that. But, at least you know you are not alone and remember, you will have a lot to offer .... for the RIGHT company!

 

[akanderson]

Thanks guys. Ya, it was a struggle to get through the last two semesters and I'm in the same boat with not just financial needs but insurance. I lost mine and haven't been able to go to the dr b/c of it an not able to afford to just flat out pay. SUCKS!
Good luck with the jobs though LOSTnut

 

[HelenaHandBasket]

Your body will let you know when you are doing too much.

I was dxd in 2003. Since then I have had another baby (I had four already!) carried a gestational surrogate baby for a friend. I have one ex-husband. I'm in the middle of a divorce. I have my own home (which I have to maintain) and a full-time job.

All of this is out of necessity! I am dating a wonderful man, I'm *trying* to make time to get to the gym and am thinking of going back to school part time.

Every now and then I will get BONE tired. Like first trimester of pregnancy tired. THAT'S my cue to take it easy. I will take a weekend and do nothing but reality TV marathons and naps. By Monday I'm feeling better.

After my dx I had a perforation and peritonitis with an ileostomy for 9 weeks before I was reconnected. Since then (Jan 2004) I've had no problems. I have never even seen a Dr until today actually! This past weekend I had a partial bowel obstruction likely from scar tissue from my anastamosis. I also have critically low phosphorus (whodda thunk that was important!).

There are so many varying degrees with this illness. My roommate in the hospital was so so sick. I can see her not being able to work etc. I have a crazy lifestyle and have not and will not let Crohn's slow me down. Listen to your body, rest when you need it, otherwise, live your life as long as you feel up for it!! Best of luck to you and congrats on the degree!!

 

[LOSTnut]

Thanks, ak!

I don't even want to think about not having insurance. I would have to sign the house over to my daughter to be able to get on the state health insurance or move back to Germany.

Both options scare me ...

Karma just needs to come around a little faster, no??? In the meantime, enjoy being with your kids cuz once you find a job you'll miss it.

And, Helena, all I can say is "WOW"; just reading it get's me exhausted.

 

[LucyL]

I agree, your body will definitely tell you when you're doing too much. I just forget to listen. And I know what you mean about loved ones treating like a breakable doll. I am recovering from surgery in March and just went back at work 3 weeks ago. The way I handle work and Crohn's is listening better to what my body is saying. I agree with the suggestion, when the pain is getting bad have a down day (on the couch doing nothing). It also helps to work for a good organization, and one with the resources to handle your needs (insurance, possible days off). I'm fortunate to work for the US Federal Government, and while we pay a lot for our share of insurance, I do have insurance and a good sick leave program. As you look for work you may want to consider only those firms or organizations that are large enough to be able to accomodate someone with Crohn's. Hang in there. You are still the wonderful person you've always been, you just move a little slower some days (-:

 

[closedingirl]

As for disability, it's a long process. I started my case in 2007 and am STILL waiting on the court's decision. You'll probably get denied twice on your own, then you get a lawyer and you'll get a hearing. The hearing is cake. You just tell the truth about what's wrong with you. After a few months, you'll get a decision.

If you can deal with being jobless for that long, go for it. The only reason I could was because my fiance agreed to support me.

 

[vonfunk]

I've got a desk job it can be done.
And i agree that you should listen to your body or else you: will need to get off the bus and sit on the ground for 20 minutes then, once your vision comes back, you'll catch a cab the rest of the way to work , and the once you get to work you will almost pass out in the kitchenette, then run off to vomit and then get sent home. Although that last situation may just be specific to me.

 

[akanderson]

Helena, That is impressive. Power to ya lady!

I think most of the time I wake up and say "Mind over matter. Push your a$$ through today." I get through most of the day but somedays, like yesterday I made it halfway and passed out the rest of the day. My fiance was home and took over for me. I just couldn't make it anymore. I do enjoy being with my girls. And my fiance has the same worries and reservations about me returning to work too. He doesn't want me too and swears it's okay I'm not working. I just get a little cooped up sometimes.

I've been trying to find a desk job, but no one seems to want me. I don't have much experience in it. I used to serve tables at the good ole Olive Garden for seven years and then became a cupcake decorator for about two months before I dropped a ton of weight and got really really sick.

A few family members I have, have disability and they've all told me it is a long process. So I'm prepared for it. I just get nervous about asking a lawyer... Who konws.

Thanks for the replies you all!

 

[silvermander]

I was diagnosed when I was 8. If I knew then what I know now, my parents would have filed for disability for me then. We've discussed this.

Every time I try working I end up in serious trouble (health wise) and end up going under the knife. But that's just me.

My mother (also has Crohn's) has worked at a middle school cafeteria for many years without too much trouble.

One of the biggest things I've learned about applying for disability is to not back down and if they get pissy, tell them to send you to one of their approved doctors. It also helps to have all of your docs behind you as you do it. If any of them don't agree, it can be much worse.

For me the medical coverage alone makes it worth while for me. I don't get much financially. Mostly enough to cover my car payment and my one doc I see every month that doesn't take any health insurance, gas for my car, my cell phone and a few other little things each month.

It's virtually impossible to live by myself and have a car. Luckily I'm with the most wonderful man. The problem is that we can't get married as we wouldn't be able to to afford my medical bills on his insurance. He works for the state, but on disability I get much better coverage. To me there's something wrong there.

The biggest thing about applying for disability is to stay on top of them, get all the paperwork in ASAP and don't let them push you around. It's not easy, but sometimes what you need to do. I've been on disability for about 13 years. It was something I needed to do, but it's not the route for everyone with Crohn's.

 

[LOSTnut]

Hey ak,

there is another thread on here about Health Insurance and incidentally I saw two articles in the home town newspaper about fed health care for people with pre-existing conditions. The first one listed the participating States, the second one a website.

Probably you can check it out and see if that might help to alleviate at least that particular issue for you.