People's feeling about not working

[Hopefullx3]

I have had Crohn's disease now for 17 years, three bowel resection surgeries, I don't respond to any medications actually most of them make me worse. I now have crohn's in my stomach. I have arthritis, fibromyalgia (which has caused fibro lumps on my elbow, and shoulder that are growing in size and are very painful). They want to start giving me cortisone shots into them to see if it helps. I also 6 weeks ago had severe back pain to the point that I was not able to stand without screaming and when I finally made it to the doctors and had an MRI it showed that I have two crushed disks in my lower spine that are over lapping and pressing on my sciatic nerve. It causes extreme pain in my back, hip and leg. It is so bad but the only thing that they can do is give me epidurals into my spine to take away the pain. I live on pain killers everyday to get through my day, and I am not one for wanting to take pain killers but do or I can't get out of bed. My crohn's has never really had a remission and it is just getting worse all the time. Okay so my question is this, I have worked since before I was even old enough to have a job. I work over 40 hours a week, I qualified for disability over ten years ago, but I turned it down and continued to work knowing that there would be a day when I would be worse and would have no choice to be on it. I am a stubborn person and even on my worse days wont call in sick. It has gotten to the point that I can barely get out of bed anymore, and there is days I don't want to go on. I feel like if I go on disability then I have given up hope and people will look down on me. I know it won't be enough money to help support my family and I feel like I am going to put alot more pressure on my husband and he has been through so much with me already, that I don't want him to have any more problems put on him. What do I do? What are your feeling on this? I was told I needed to be off work for about 6 months to qualify which is crazy because how can I live with no income for that long. Please anyone's perspective would be great.

 

[krika]

hi

this is a difficult situation. I believe that through all this you should take care of yourself. When being that ill and in such pain and to drag yourself to work is not good for you or any of the family members, when they only get the last pieces of you when you are nackered from work.
I would see how quality of life is when you are at work, work part time, are off work and only with your family and close ones. How you interact differently with people around you in the different situations. How you handle everyday life and try to put it in perspective. Yes, we all need money to survive and manage, but in the end, all we are stuck with is how the quality of life we have had we remember, not the job we had or how well we did it and so on.
I am not working, its not because I dont want, but I have crohns and cfs, im in a lot of pain aswell. If I wore to work I wouldnt have anything to bring home other than pain and aches all over my body and lying on bedrest to try to ease the pain and exhaustion, with little positive to give to people around me. Its hard enough while im not working.
have you considered working part time, and be on disability for the remaining half?
I wish you luck in this difficult decision, but remember, not working is not the same as failing. You will be giving youself and the people around you more of you as positive aswell and have more time around the home to keep it up and make dinner and all that, which can be enough when living in chronic pain and illness.

Best of luck

 

[Mike58]

Hopefullx3,
Have you discussed not working with your doctors? I have not worked since July 2013, used up my 6 months of Short Term Disability benefits and have applied for permanent disability. It is a tough decision to make but you must put your health first. It is scary to think can we live off my disability payment each month but what if you get so sick that you can't work anyways. My doctors have been very supportive with me going on disability because they know how this disease can affect everything you do. Hell, somedays it's a struggle just to count out the number of pills you have to take.
Hang in there and keep using your husband, doctors, family and friends, and this forum to support your inevitable decision.

 

[Axelfl3333]

I stopped working 18mths ago fortunately got my full pension so I,ve been lucky in many ways ,anyway here,s my perspective on not working,people generally don,t look down in fact most are slightly envious because I don,t have the stress from work and we all know how it's been since the financial melt down,colleagues from work are just that work colleagues (mostly)the lack of stress helps crohns.my friends outside work are still my friends.
I packed it in to help my health improve which is the number one priority and it's made a big difference,you come first,not your employer,they don,t really care,they,ll close ranks and carry on,next month they,ll barely remember you,your healths worth more than that.all the bet and good luck

 

[Hopefullx3]

Thanks to everyone that responded. I see my doctor tomorrow and I am going to talk to him about it. I have 6 weeks sick leave left from my surgery and I might look into taking it, and then while I am off trying to look at my other options. I had such a bad day again at work today that I was off and on crying. It really isnt worth it, I just dont want my kids to suffer and miss out because I cant afford for them to do things. Thanks again everyone, it made me feel a little better.
Hopefullx3

 

[DJW]

Hi Hopefull. So sorry you're going through this. I've avoided the disability option all my life. Felt like I was giving up. But this past year has been brutal. Flaring for over two years, multiple surgeries, numerous ER visits and extreme fatigue. My very ft job was killing me slowly. I'm on disability now. I look at it as a chance to get better so I can return to work.
What province are you in?

I went on ei (illness) for 15 weeks then Ontario Works while my disability papers were submitted and reviewed. I was accepted on the first try. I struggled with it but I'd be working if I could and I have paid income tax all my life to fund these programs.

Hope everything works out well and you start feeling better.

 

[Hopefullx3]

Actually I to live in Ontario. I was excepted to disability about 10 years ago but what I was told is that I needed to be out of work for 6 months and then I could get it. Because I am married she told me that I would get less because of his income, which is so unfair. I have put in my time as well working for over 20 years full time now. I cant go 6 months without money or I would lose my house. I think that it is crazy how there is some people that I know that are on disability and it is because they caused there own issues and got excepted so quickly and have never worked a day in there life. And then someone like me that didn't cause my issues has to wait and is given a hard time about it. I am going to talk to my doctor tomorrow and see what he says. I really enjoy making my own money and helping out the family but it is just to hard, and no one really understands me.

 

[DJW]

Keep us posted.

 

[Hopefullx3]

I went to the doctors today and he told me I am one of the strongest people he knows. I have been through so much and I try not to show my depression and stress to anyone else. He told me that I 100% qualify and should be on disability. He will do whatever I would like in this matter. He said eating one meal a day for 17 years has taken such a toll on my body. My bones are very weak and my body is having a harder time with everyday tasks. I told him to eat more I would have to be at home all the time. My work would not approve of me spending the whole day in the washroom. I am getting in to see a new specialist in Hamilton a great hospital. My GI doctor here is a nice guy but he is to proud to say that he can't help me and send me to someone that can try. He has done everything but Remicade and he keeps saying yes then no on trying it because I don't have any coverage. He has done some weird things like tell me to take milk of magnesia to make me go to the bathroom when I had a blockage and it caused me alot of problems. Then he wanted to change my pain meds from percocet to tylenol #3 because maybe it will bind me up more when I was going to the washroom to much. I also have fibromyalgia, arthritis and two crushed disk so tylenol #3 isn't strong enough to even touch my pain. So once I see this new doctor I am going to make the big decision if I am going to try and continue to work or just say enough is enough already and try to rest to get better.
Thanks everyone for your support.

 

[jlm]

Hey hopeful. A few years ago I got really sick after having surgery and just haven't been able to get back to 100%. I've spent the last few years off and on working. But have been at my current job for a year. There was a period if time where I needed to look for some form of money, I was living off of a hospitalization insurance policy my parents bought when I was a kid but that was running out and my sick EI benefits were up and I learned I didn't qualify for my long term disability through work since it was considered a ore existing illness, how wonderful.

So I started to investigate my options, 1 I could apply for disability benefits that would take up to 4 months to approve (I don't think you have to be off work for 6 months?). 2 I could apply for income assistance and disability benefits through them. Or three I could go back to work. Options 1 and two didn't work for me, since I was 25 I haven't paid enough into Canada pension to make my monthly payments very high. And I just couldn't make myself apply for social assistance, they asked for so much information It actually made me sort of embarrassed (I think this program should be altered). So I went back to work. I so feel your pain. I feel like I have to work. Because since I'm 26 people will judge me if I don't. The programs available for people with a chronic illness are pretty slim. But then I see people on my Facebook who never worked a day in their lives still live at home win their parents and give me a play by play of their afternoon nap because they had a "rough" night and didn't sleep until 2 or they woke up early... Sorry that turned into a rant..but my point lol, I believe while your waiting for disability to be approved you can apply for 15 weeks of sick EI, then social assistance (not sure what it's called in Ontario) while you wait. Or if you have short or long term disability at your job that's the best way to go, most plans pay almost your weekly salary.

Maybe some helpful advice now. In manitoba we have Medicare, even though I make a decent yearly salary they cover all of my medication (including remicade and Humira) except for a 1200 dollar deductible. Does Ontario offer anything like that? Your doctor could also try to apply for compassionate release of the drug for you to get you a few free doses. And both remicade and Humira offer programs for partial payments.

Since your having issues with eating and going to the washroom (this is my biggest issue too) ever thought of doing TPN? I've been doing it for almost a year and it's really the only way I can get and keep calories.

 

[AJC - Australia]

Stop Working AND feel good about it. You have a full time job trying to stay well enough just to survive. Anyone that loves you and cant see that, well that is their problem and perhaps they should spend a day in your shoes.

 

[DJW]

Hi Hopefully.
If you are considering disability there are some good benefits.
I'm going to file a T2201 disability tax credit with CRA. I hope I can get retro tax credits as I've had crohns since 1978. Also look into the governments RDSP. (registered disability savings plan which comes with government deposits until age 49). Ive been grinding it out for years. Now I see how much help there is for us.
PM me if you have questions.

 

[Hopefullx3]

Thank you so much. This will really help. The biggest thing stopping me right now is that I don't want to put any more pressure on my husband. He is honestly the greatest husband ever, and I am not just saying that because he is mine. He works overnights and takes care of our three children for the last 17 years now. He has given up alot of things for our family. He lived on three hours of sleep for many many years, and it doesn't matter how much sleep he has had he is with me for every appointment no matter what. I was excited today that I got a phone call from my doctors office. He is getting me in to see a better specialist in Hamilton and that doctor is booked up for months. They managed to get me in April. The doctor's name is Dr Marshall. I have been told so many great things about him.
Here's hoping he can help.
Thanks again. I will definitely ask you questions for sure. this seems like a scary process and all the help and support will be greatly needed and appreciated.

 

[jlm]

I get the disability tax credit. I've been getting it since I was 8 (my parents claimed it) when I got older though my GI refused to refill out the forms, she said I didn't qualify so my family doctor filled it out and it went through no problem, just like it's done for the last 19 years. I definitely recommend starting an RDSP once you get approval for the tax credit. It doesn't help very much now but when I'm older it'll be awesome.

 

[Hopefullx3]

I must say to everyone I am glad I wrote this asking everyone's opinion. I have cried over it so many times, feeling like a failure, and a burden to my family, but all of you have made me feel better about my decision. I have looked into thing and there are a few things i can do to help with money. It may be a little still before i go on it, but it will be much easier on me now. THANK YOU ALL SO MUCH.��

 

[DJW]

I too have Dr Marshall. I've only seen him once but I have a lot of confidence in him.

 

[mdd]

Hi Glad you are here. I had to go disability. Not just because of my Crohn's but also my heart gave out and had bypass 4 yrs. this June. I was ready to go back to work and got a big set back. I now do not miss it because it to tuff on my body. I get money to help my family. My husband works. I felt bad. Yes I cried but at times I do. It's a cleansing. For me need to get it out. Now I go to the gym and shop . One day at a time. I hope I help Maria