Employment with WG

[BarbW]

I am a teacher and an association president. I work really hard and there is always so much
stress. I was diagnosed in April and finally saw a great vasculitis doctor. I start Rituxan next week.
I am 51 and unsure how long I can sustain everything. I hope I get my strength and health back soon.
I did have the foresight to buy disability insurance years ago. Who knew? I just don't ever want to use
it; I have so much to do. the fatigue is awful. I just pushed through the year and am looking for relief.
I started Prednisone two days ago and Cedars is working with my isolated regional hospital so I can have Rituxan close to home. We will see how it goes.

[sbeach78]

So we were got our diagnosis very close to the same time....
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[sbeach78]

I am on cytoxin and pred.

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[annekat]

At your stage of treatment with CTX and pred, I could barely leave the house, but it did get better. I work at a self-employed business selling things I make at an outdoor market. I don't make a lot of money and was 59 years old at the time so was able to get SS Disability benefits. You can make up to around $1000/mo. to supplement your benefits. After a couple of months I was able to work again on a limited basis. Now after 3 years I'm not quite capable of what I was before diagnosis, but can do a fair amount. The fatigue is definitely a factor and I must pace myself. See how you feel in a couple or three months and then see if maybe you could work part time, but in the meantime, do pursue SS Disability. At your age, though, it might be a bit more of a fight. The fact that you are not currently working, or able to work, should help, especially if it has been a few months since you had to quit.

[sbeach78]

I do not leave the house much energy is just not there. I tried a few times to set out fishing but casting poles was exhausting. So I just watched from the shade as the family did all the work. Kinda hard to watch, you know I am not use to being out fished...lol

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[Alysia]

I am a teacher and an association president. I work really hard and there is always so much
stress. I was diagnosed in April and finally saw a great vasculitis doctor. I start Rituxan next week.
I am 51 and unsure how long I can sustain everything. I hope I get my strength and health back soon.
I did have the foresight to buy disability insurance years ago. Who knew? I just don't ever want to use
it; I have so much to do. the fatigue is awful. I just pushed through the year and am looking for relief.
I started Prednisone two days ago and Cedars is working with my isolated regional hospital so I can have Rituxan close to home. We will see how it goes.

welcome to the forum Barb. I hope you can get rtx soon and feel better.

[windchime]

One of the hardest things for me to learn was pacing myself so I didn't exhaust myself, plus learn exactly what my limitations were. If you push yourself though the exhaustion you may do more harm than good. This disease doesn't like that or stress. Especially in the beginning be gentle with yourself and allow yourself time to heal and your body needs to adjust to the meds. What ever is going on in your life will be there when you are feeling better or if it isn't it wasn't meant to be anyway.

Although it's hard not to feel guilty there are some things you just need to say no to. I missed my granddaughter's birthday party last Dec because I just couldn't leave the house. I barely made it through Thanksgiving. The kids all survived this (they're adults), but even younger kids can understand when you're sick. My grandkids understand that grandma just can't do some of the things she used to. Be gentle with yourself while you heal.

[Bing505z]

I’m an oil refinery worker. I make excellent money and have excellent benefits including covered short term disability and long termdisability. My job is like what you are use to: extreme physical work. I was out for four months, had sinus surgery, 2bronch’s, lost my right lung upper lobe (Doc said I wouldn’t miss it anyways)and had to learn how to walk again, but I jumped right back in the saddle with determination.I am off all meds and will test every 4 months to see if I need Rituxan maintenance for every 6 months. Between time, I will keep in touch with my 3doctors (rheumatologist, ENT, and pulmonologist). It was tough getting back to work, I was sore but it is getting easier. I find now that if I sit down for too long, I’ll getreally stiff, and if I stay active I have no problems. I feel great off the Pred’. That junk gave me high blood pressure, increased my heart rate, jackedwith my blood sugar and caused my legs to swell.After a week off that crap, my blood pressure, heart rate, blood sugar, and legs all returned to normal. I startedback to the gym and have removed 15 lbs (in four months I first lost 30 poundsand then gained 50lbs). I have another 20 plus years before I can retire, so Iam in the same boat as you. Get better and get a job , even if it’s a physicaljob (I feel that physical activity heals a lot), with benefits that includedisability. But I do understand at times you can’t be picky. Also, from what I’veread here, I do understand that everyone has different degrees of damage fromthis illness and everyone recovers differently. I work 12 hour shifts, rotating days andnights, and never felt anything to painful to not be able to push through. Ifeel some discomfort also, but discomfort shouldn’t hinder anyone. I eat good:lots of fish and fruits and veggies. I don’t believe in cutting out the fruitbecause of sugar, that is a load of horse crap. Fruits fight inflammation andinfection. I also stretch a lot and theDoc tells me to push a little more each day. Each day I feel better and better,have less fatigue. You can do the same …..no pain … no gain.

[sbeach78]

Bingz that's awesome you were able to get back to work so quick, I hope I can soon, but with my kidney involvement I bet they won't release me anytime soon. I guess the biopsy should tell us more.

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[Alysia]

welcome Bing I Like your spirit.