I have no idea what I'm going to do! After months of poking and prodding and thinking my issues were just hormonal, the doctor confirmed today that I have Lupus. I had suspected this for quite some time, but after having so many doctors tell me that I was imagining things, I chalked my symptoms up to stress.

I've read so many blogs, articles and threads about how the caregiver's health declines, but I never expected to be one of the physically unhealthy caregivers. In fact, I assumed that I was one of the younger caregivers at 40 (and not even a full-time caregiver at that).

So, of course, I have been researching like crazy. Clearly, I'm going to need to change my lifestyle... but HOW?

Change to an organic, less processed diet? OK... can't afford that. Dad doesn't eat that stuff. How am I going to continue hanging out with him without seeming "uppity" because I can't eat the food?

Reduce stress... HAHAHAHAHA!!!!!!!!!!!!!!

Exercise more.... I repeat HAHAHAHAHAHA!!!!!

Thankfully, Dad doesn't understand all of this, and I REALLY don't want anyone to know. If any of the "family" finds out, they will somehow make this my fault or accuse me of seeking sympathy or even making it up. After all, they think I'm doing such a horrible job at this (apparently, I should take care of him 24/7 and "pay myself" instead of working my "fancy" job with my "fancy" education)

So much for reducing stress. I don't know what to do...

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Tiny, your dad is in Assisted Living. You are working two jobs to provide him with "extras" and to pay the difference between dad's VA benefit and his fees at AL.

I think this is where you get off the train. Let the rest of dad's family (he has 12 other children and a passle of ex-wives, right?) step in and don't pay them any mind.

Go back to one job and use your "spare" time to take care of yourself. You've done your part.

Be well.
Helpful Answer (40)

So sorry to hear about your diagnosis.

If you are educated and smart deep down you have to know that you have to step back.

Lupus can be very serious. It can affect your major organs. Any small illness can land you in the hospital and be life threatening.

With all that being said if you take care of yourself like you know you should you can keep things under control.

Eating healthy is not that much more if any more expensive it’s just not very convenient. Especially if you don’t like cooking for yourself.

If your Dad is in Assisted Living, he is Assisted.

Is your Dads life really more important than your own?

I developed Discoid Lupus when my Mom was in the Nursing Home. The stress of that and my sister driving me nuts about Mom was just too much. I was 50.

You are never too old or too young for your body to send you a very clear and serious message.

Please take care of your self first.
Helpful Answer (28)

A wake-up is calling - PICK UP THE PHONE!!!
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Oh dear. It would never be a good time to get a Lupus diagnosis. I am very sorry to hear that.

It certainly was never "all in your head," and it wasn't caused by stress or anything you did. It wasn't caused by your lifestyle. Keep that firmly in mind. Not Your Fault. Don't accept any guilt trips.

Reducing stress is always recommended with Lupus. (Reducing stress would be good for all of us!) One thing I suggest is less contact with your critical, negative family members. You do have to stay in touch with them, but keep it to a minimum!

Consider reducing your caregiving time. If family is willing to pay you (with you dad's money, I assume) they should have no problem paying a helper from an agency. (Who takes care of Dad when you are at your fancy job?) Are there times or tasks that are particularly stressful for you? Helping Dad shower? Settling him for bed? Having hired help could relieve you of those tasks.

While the hired help is there, go for a walk. I know, I know, how can you fit that in? That was a big lifestyle change for me when I was diagnosed with diabetes. Walking is the easiest, cheapest, and for some things most effective exercise. There are videos for walking exercises in your home, when the weather is bad.

Changes in eating habits is also part of diabetes treatment, and I know that can be a real challenge -- and cause its own level of stress. Don't think you have to do everything at once. If you are now having processed food 5 days a week and you can cut it down to 3 without a lot of trauma, that's a good start.

Is work a haven away from the caregiving and/or is it a source of stress?

I agree with Sunnygirl. Work with a professional to help you adjust to these changes.
Helpful Answer (18)

Thanks for the responses everyone. I nearly melted down at work, so I used my EAP program and visited a life coach for FREE...

Suggestion 1: Like everyone said... take some ME time. I took two days off from work, used my employee discount from my second job and stayed at a nice hotel for $35. I knew I would end up tending to my "must do" list if I was home, so it was so awesome to just lie in bed, order room service (at a 50% discount) and not worry about cleaning up after!

Suggestion 2: Go to the farmer's market! It was SOOOO much fun! Organic really isn't expensive and I get to support local farmers. Even doing that felt refreshing!

Suggestion 3: Create an exit strategy. I'm going to taper off working the second job and plan to quit altogether by March of next year. This will give me time to "help" Dad transition to using his own money for his expenses and/or move him to a less expensive facility.

Maybe this is a blessing in disguise. It forced me to take a long, hard look at what I've been (more accurately NOT doing) for myself and realize that Dad has lived a full life and I still have lots of life ahead of me. I'm making plans to live it and take better care of me.
Helpful Answer (16)

I would just like to echo the good advice you have been given here. If dad is in assisted living - they can take care of him as they are paid to. I didn't realize you were working two jobs and giving dad money. Time to stick to your main job and take care of your health with your time outside work. It will be an adjustment for you - focus on yourself. You cannot help your dad if you are sick. Also - i'm sorry you are dealing with this!! But do listen to your body. You matter too!
Helpful Answer (13)

So sorry about this diagnosis, but it sounds like you are grappling with it and thinking about what to do next, which is great! I vote for doing what you feel to need to do with your food. Walmart and Costco sell many organic items. Being sick is expensive so in comparison nourishing yourself well may not be as pricey as you think. And who really cares if various family members don't understand or approve? Sometimes you just have to let your freak flag fly! Best wishes to you.
Helpful Answer (12)

So sorry to hear about your diagnosis. 

You're already thinking about what to do next, so you're on the right path. You already know what sounds unreasonable and what sounds impossible. You are ahead of the game.

Don't try to implement your changes at once. And start small.

I started by replacing candy with organic, fair trade chocolate. It was rich, indulgent and even though more expensive, I ate less and ended up spending less. Then one day I noticed all the organic "stuff" was on that aisle. I started getting everything I could on that aisle. The more I shopped organic, the more my grocery store rewarded me with organic coupons; the more money I saved. And the time I saved hitting produce, organic aisle, milk/faux milk aisle while skipping the rest of the store - invaluable.

So one little chocolate bar scored me a mostly organic lifestyle, a less stressful, one-aisle shopping experience (so much better than bumping buggies with the harried shoppers), and time that I could use to exercise but haven't...yet.

You got this.
Helpful Answer (12)

I'm so sorry to hear about your diagnosis. At least you have some answers though. My aunt has it. It's serious, but, there are things that can help. Stress really is a problem though. I'd get a professional to help you figure it out. I would suspect that lifestyle changes would be a plus.
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Sorry for my last comment--the computer only displayed 10 comments, and then due to another one of its useless "updates" I had to sign in again after typing my comment, and only now it's showing the ca. 30.

Maybe I'm getting old (well, of course I'm heading in that direction!), but I wonder why it seems that every time there's an "update" or "improvement" in electronic technology, it always seems to result in eliminating what works and replacing it was something more cumbersome and less intuitive..
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