A disturbing diagnosis and inconvenient timing; I have no idea what I'm going to do!

Thanks, disgustedtoo (I like your name!). At least this website is usually more user-friendly than Yahoo often is, and gives more visible space in the typing area so one can edit a comment more easily before posting!

jacobsonbob or anyone else who encounters the change in number of responses:

You are not crazy or forgetful. When I first encountered this I was perplexed, but figured it out.
Just under the original post, to the right of "Answers 1 to x of x" is a box labeled "Sort by" Sometimes it is set to "Most Recent", while other times it sets to "Most Helpful". The "Most Helpful" posts 1 to 10 of 10. If you select the box and change it to "Most Recent" then you will get ALL responses. This is not really intuitive, especially when one time it shows one way and then next time it switches to the other (as jacobsonbob noted).

As for the login prompting - when I try to post via my phone, I ALWAYS get this login prompt and often lose my post. On my PC I have not had to reenter that password. Unclear why it works this way, but it is annoying. Perhaps I have not entered it on my phone yet.... I prefer to post via PC anyway as the screen is larger and easier to review my comment before posting it (but still manage to make mistakes! FWIW once you post, the top right of your post has an Edit "button" so you can fix your comment without making a new post to note corrections!)

I’m sorry to hear you’re going thru all of this like everyone else. I am thrilled to hear you take the “me” time, you definitely have to. The only thing I really wanted to add is that my Mom was diagnosed with Lupus many years ago and awhile later, she wound up not having it. I do not know if testing for that has gotten better but you may consider a 2nd opinion if you haven’t already gotten one. Blessings to you and your Dad. Oh, and forget the negativity or comments from the unappreciative people in the family. After all, they aren’t doing it right?

Tinyblu, So glad you took our advice. The pamper night at the hotel is exactly the sort of thing you should be doing - obviously not 24/7 !!! but at least from time to time, totally guilt-free. Well done!!

Good job , Tiny. Dad has a facility that is caring for him. Let them do their job. Turn off your phone.

Way to go Tiny!! Keep up the great work, and your great spirit.

Lovely to have a good update, Your pamper night sounds wonderful, hope you can use it as a memory stamp, when life gets a little tough and either go sit in a cafe and reminisce ... or repeat it. I'm sure you will have the strength to put forward YOUR case to your dad, and see that both of you are in a win-win situation

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.

Jacobsonbob: No, you're not getting old. I noticed that I had to sign in before the site would accept a new comment.

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..

This string was longer a few days ago; where are all the new comments?

Well, you know the solution already! What you don't have is the courage to see it through. First step is the difficult one. If you can manage that, then you're on your way to freedom. Inform your diagnosis to your dad and immediate family and leave. Go build your own nest.

Maybe it's time to find Dad a nice nursing home on Medicaid. Lupus is not your fault. I had Mom in very nice NH. She was taken good care of. I chose one of their doctors for her care. They took care of her meds, her wash, changing of her sheets. Unlike AL where I was responsible for diapers and personal items, etc. All I did was visit. If the rest of his children disagree then let them deal with it. Your Heath I important at this time.

Wow, am beginning to wonder if a nasty persistent rash on my lower right leg is lupus rather than something to do with insects in a field. I already eat very "natural" and low salt by choice, but stress and insomnia - well they are my constant companions.
I should have retired from self-employment 4.5years ago when my pension started arriving. Such a bad decision to carry on. Feel like flight not fight when new problems crop up. Awful realisation - I had no idea that I had so many irons in the fire - difficult to pull out if so many people depend on you and decline your request to take over from you.
So avoiding stress is a really tough one these days. Good diet yes, but escaping to the open green pastures - not easy.

Tinyblu: Oh, first and foremost BIG HUGS ((( )))!!!!!!! I have a friend with Lupus, but she did not take care of herself. She had gastric bypass surgery because she used to weigh 389 pounds. Then in 2 months, she went down to 140 pounds. I pray that you can adapt to a different diet and possibly get some respite.

Hi Tinyblu:

Good job reaching out to this forum. Always helpful answers here.

My advice is to have AT LEAST a weekly get-together with your two best friends (or one, or three, whatever works for you). If you are lucky enough to have friends like mine, they will listen, consider, and give you tough love and helpful advice that helps you take care of YOU. They will keep you grounded. They will help you feel energized and supported when you leave your meeting/dinner/phone call. And you will know you have a place to turn (every week) if things come up with your dad, negative family members, jobs, etc. And you will do the same for them. You all win. See if you can put together your support posse. Even if they don't live in your town, you can do this over the phone. Share your weekly triumphs and hiccups in life with positive people! But don't suck them dry...cheer them on and listen to them also. This is how to avoid the negative people...spend more time with the positive ones. I believe this is one constructive way to help reduce your stress level. As women, we need to "vent." When you don't have a listening ear, another way to vent is to write your feelings in a journal. It seems simple, but it can really help. Good luck...it may take some time. Hang in there!

WOW.....this site is awesome. Nothing really left to be said except DUMP THE FAMILY members that are so critical! IF your dad is in AL I don't understand why they are so critical? Tell them you can't do it anymore but would be willing to chip in with all of them to help with his AL expense. Look into medicaid, VA benefits, etc. Work with a social case worker to see what's out there to help with expenses. And then let them take it from there. My sister had Lupus and had a full time job and did great however when she would have flair ups she would go down hill a bit. So please work with someone for your dad's problems and YOUR's! Good Luck and God Bless. (your family doesn't know how hard it is working and care giving. The emotional toll it takes on a body. I'm 66 and have been at this with several family members for 10 years and I can tell you my body is letting me down a bit. Just from stress and emotions)

tiny, if you're working two jobs, cooking fresh food is probably a challenge. Many of the fast food places offer salads, and even with the commercial dressings, they're better than fries, for example. While organic food is good, fresh produce (non-organic and more wallet friendly) is still better than something processed. In this early phase, think in terms of "better than" - unsweetened iced tea with a little sugar added is "better than" a soda. Also, ethnic cuisines lend themselves well to healthy eating - stir fries, bean based dishes, pasta with vegetables. Cottage cheese is quick and has dairy and protein. Even Ramen can be spiffed up with the adding of some sauteed chopped vegetables, leftover chopped meat. Just leave out the salty flavor packet. Gradually, you'll figure out ways to cook once, eat two or three times. Sometimes on weekends, I'll make a pot of cilantro/lime rice, some black beans (canned work fine) and corn salsa (really easy to make). Then it's just a matter of heating a bowlful or using this for burrito filling - very quick.

Sorry this go to be so long, but there is SO much to cover!

Not knowing anything about Lupus really, I did some lookup before responding - by no means am I an expert at this point (or ever!)

Although it cannot be fun, it doesn't HAVE to be a death sentence or even a major impact on your life. As for "...thinking my issues were just hormonal...", several sites did indicate that although it is not proven to cause Lupus, hormones, especially estrogen, can exacerbate the symptoms (and yes, men produce estrogen too). You also said you "...chalked my symptoms up to stress." and those same websites indicate that stress can also make the symptoms worse.

Hormones can be controlled somewhat, but if possible, like others, I would recommend avoiding medications (the lists of side-effects for most medications turn me off!!)

Stress is something you can attempt to control. Avoiding interface with the Negative Nancy family members is one way to work on this. Self-control can be worked on; for example when feeling stress coming on, take a step back, take a deep breath (or many) and try to relax your entire body. Walk away from the stress inducing situation - take a brisk walk if you have to (you get some exercise at the same time!)

"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?"

If dad is eating food provided by the AL facility, it likely isn't JUNK food, so why can you not eat what he eats?? Concerns about whether or not to use organic follows below... You can pass on items they serve that might not pass the "good" food test (also see below.) For things like packaged cookies, etc, you can just say you're watching your diet to keep from getting fat! Giving up chips for Lent or some other reason! Regular meals at the facility should be FINE for you to eat. See if you can get a piece of fruit instead of cookies or chips - the place our mom is at has options to choose from, like soup or salad, and a choice of meal items that they can each mix/match.

Less processed is not what it sounds like. Basically ANYTHING WITH A SHELF LIFE (think crackers, cookies, even heathy sounding stuff like granola bars, snacks of that sort) is PROCESSED. Try reading the ingredients on some of these "packaged" items - many sound like science experiments, and if you see ANY reference to HYDROGENATED, partially or otherwise, DROP IT AND RUN! Meats that are highly salted (nitrates, etc like bacon, pepperoni, etc) should be avoided as much as possible, even for "healthy" people! Pass over prepackaged meats for fresh from the deli. Pass on white breads/rolls, but compare the ingredients in other breads/rolls - avoid items that have more sugar (these are hidden under names like sucrose, maltose, dextrose, corn syrup, etc, among others) I cannot even believe that good old Peanut Butter is tainted with sugars!!! They DO make "natural" PB (peanuts, oil preferably non-hydrogenated, and maybe some salt.)  Edit: I also forgot to add that ANYTHING with a label that says low-fat or worse fat-free should be suspect as well - any fat removed is replaced with SUGARS to add flavor back in lost to the fat reduction.  Some items are "naturally" fat-free (fruits and veggies) but many are not (candy is often listed as fat-free!!!)  The stuff that is crappy for you SEEMS "cheaper" and much of it tastes "good", but it is NOT good for you and in the long run is MORE expensive as it does not last in your body and you require MORE of it, and additionally they can lead to other health issues.  Not only is the stuff over-processed, but some of that processing is what your body would have done.  If you *REALLY* want fully processed food, just eat sugar - your body breaks down foods to extract vitamins, minerals, fiber and basically the rest is broken down to simple sugars, but the body WORKS for it!  If you eat processed, it is akin to eating regurgitated worms that bird moms feed their babies - some of the digestion process is not needed, so everything "flows" through the body too quickly leaving you wanting more.

As others have stated, you do not need to go fully organic (and I add you do not even need to go partial organic.) It is somewhat of an overused label, as there are stringent rules about what is "organic", and the list of what is still ALLOWED, in my opinion, would make it ALL NON-organic! Mostly organic means that the foods are grown without pesticides, antibiotics, etc. and use "natural" fertilizers. Although some foods may be grown "organic", nearby fields are not and pesticides and non-natural fertilizers can wash into the area or be blown there (tests of items in "organic" stores have proven many items labeled as such are not, yet they cost more). GMOs are also not well understood by the general public - they are modified in attempts to make them produce more, resist pest and blight, etc. The wheat you consume is NOT the wheat eaten many eons ago, mostly "modified" through cross-breeding, etc. This is not much different than GMO except it was not done in a lab setting. Many fruits and vegetables are not impacted, such as those with rinds and outer layers you remove (think, for example, of melons, bananas). However others can be washed to remove most residual pesticides (most fruits and veggies are washed prior to shipping, but extra washing can be done.)

The big picture here (doctors do not get into details) is to keep your foods as close to their NATURAL state as possible. Eat more fruits/veggies, less meat. Cooking veggies is okay, but eat some raw too. Frozen veggies are better than canned, but will require cooking - still better than canned! It takes your body longer to digest raw and even cooked veggies, vs the processed crap, therefore keeps you feeling sated longer. Cooking can also remove/reduce some benefits, but isn't critical to achieve what is wanted here. Keep sauces, canned items (esp soups), etc to a minimum. Making your own granola is not hard either! I had to learn all this myself many many years ago when told my cholesterol was too high and that I would have to take meds (NO WAY and never have!). All the hype then was about eggs, milk, red meats, etc. NOTHING the medical people suggested was of any use to me as THAT was not the issue. It took a year of my own research, but once I found this, in a matter of FIVE weeks I was able to get the total dropped from 275 to 233 by eliminating "processed" foods, including the frozen dinners I was using for lunch at work and eating more raw or cooked veggies and fruits and more home-made meals. I would prepare meals like I was feeding the family still, but portion it out and freeze some for the future, allowing for variety - usually could cook up several meals on the weekend and eat for 2 weeks! Continuing with this change of eating habits and doing treadmill at a new work gym about 20m/day not only got my cholesterol down to normal, but I also lost about 20 pounds as a bonus! I chopped up two chicken breast halves into bite size pieces, sprinkled them with several spices, and lightly cooked them with a bit of oil in about 10 minutes - I froze these and would make a salad for lunch and putting some of the frozen chicken pieces on it helped to keep it cold until lunch. Lettuce, tomato, cucumbers, broccoli, cauliflower, bits of cheese, carrots, etc with some dressing on the side, sprinkled with chia or flax seeds just before eating if desired, it made a very filling, AND good for me, lunch. Over time it really DOES NOT cost more to eat RIGHT, as the GOOD foods fill you up and give more lasting energy than the "processed" foods. More than likely they will make you FEEL better too, as you will be getting more and better quality vitamins and minerals from your foods. For snacks, raw carrots and nuts are good, as well as other items like broccoli, cauliflower, and they give you that "crunch" you might miss from the crackers, cookies, and chips, and dried fruits (raisins, dates, apricots) for that "sweet tooth". The medical "experts" are catching on to this in recent years...

"Reduce stress... HAHAHAHAHA!!!!!!!!!!!!!!"
See Above - there are ways to reduce stress, even if it is only to learn how to avoid it and/or walk away from it when you feel it coming on. Once you learn how to do this, it will get easier every time!

"Exercise more.... I repeat HAHAHAHAHAHA!!!!!"
Ditto - it does not mean you have to spend an hour a day every day at a gym with weights and all that - just talking a breather and walking briskly for 10-15 minutes (think break or lunch time at work) can help with exercise AND stress. Park further from your work place to increase your walk in/out, and do the same when shopping.

"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 just what are THEY doing to help?? Nothing? Ignore them, they are not worth the time of day. Pay yourself if you were caring for him 24/7 they say???? With what? You do not say it in here, but others' comments indicate you are working two jobs, in part to help pay for dad's care? If he has enough funds that he could pay you for 24/7 care, then why do you need to contribute so much for his care?? Are they holding the purse strings and not helping to use it for his care?? Trying to up their inheritance? Ditch the second job and use that time to tend to yourself AND visit dad more often - your visits will mean MORE to him than anything else!!!

Does someone have DPOA or guardianship/stewardship for your dad? If not, perhaps you could explore getting this done with an Elder Care Attorney - so long as dad is agreeable. If there are assets, they should be used NOW for his benefit, not saved for those family members. You should not have to compromise your health to ensure your dad is "comfortable" - noble idea, but if the funds are there, your time would be better spent WITH him and taking care of yourself!

I think you have received excellent help here. Isn't this a wonderful resource? One thing I do, I purchase milk in 1/2 gallon cardboard containers. It seems to me that milk in gallon plastic jugs goes bad sooner. It smells and tastes rotten to me. Oh, I miss the wonderful milk delivery to the house in glass bottles.

Everyone has given you great advice , the only one I cant see is the one of where to get rid of excess unwanted baggage
Divorce any family member that tells you that you are making it up and are not helping. I've 'divorced ' 2x sisters and 1x brother.
They were rude and obnoxious to the one remaining sister. Regarding care of the Mother.
Life is now bliss without having to communicate with those that were of no companionship during my childhood, and only a PITA during adulthood.

Prepared food = salty food - watch your salt intake - I reduced mine about 1973 & hubby did in 1979 when we hooked up together - his identical twin had open heart surgery of 17 hours [valve, quad by pass etc] while hubby had 2 1/2 hours [genetic valve problem] - hubby fine playing golf etc but twin has hard time walking uphill so I think that shows how reduced salt diet works in long run

I crochet & used a bio feed back machine to see if it reduced stress - better than meditation plus a sense of accomplishment - get a hobby where you sit down & relax regularly - you can't eat while doing this as food contaminates your work - this will help keep stress at a managable level - good luck

There are a many healthful foods that are easy to prepare and enjoy. I eat a lot of fresh fruit (usually including three bananas per day), vegetables, unsalted nuts, oatmeal, and plain non-fat yogurt. The only "prepared" food I eat is canned sardines (often those packed in water with no added salt). Occasionally I go out to a buffet restaurant where I can get seafood and a good salad bar (and if an item is salty, I pour water into a soup bowl to rinse off the excess). I believe a large part of the problem people have in "preparing food for one person" is that they assume meals have to be hot or cooked. I eat organic produce if it has been reduced in price. I usually drink diluted orange juice (to reduce the sugar content) and take vitamin pills. Others might think this is "boring" but I believe it helps me to keep getting excellent lab results and reports at my physical exam without medications at age 65.

I saw the comment on milk--the date on it is the "sell by" date and NOT an expiration date. Although I rarely drink milk, years ago I did, and by keeping it in a very cold refrigerator and replacing it promptly after taking it out, I found it was usually fine even three weeks after the sell-by date.

Lupus is NOT the end of life or the end of living! Lupus is a label put on you (and others) and I call it scare tactics.

Actually, you can go to cleaner eating without going poor. It means, no more canned goods - you switch to frozen vegetables. No more box mixes, you start from scratch. You can actually save money with cleaner eating. You start watching your portions and try to limit the chemicals going into your body.

However, just try to accept and take comfort from the fact you are not imagining your problems. And move on. I know people with Lupus and they continue to lead normal lives. Whether you go onto medicine or not really is up to you. Personally, I chose the cleaner way of living as medicines are just more chemicals going into your body.

I know people with Fibromyalgia too - some take medicine, some try to walk more. My sister is the walker, my SIL is taking medicine. My sister rarely complains, my SIL complains all the time. We do get choices.

Organic is just another label most of the time. Anyone can slap "organic" on a package as it just means "grown" and is supposed to be without pesticides - did you see that "supposed" I put in the middle of the sentence?

Stop buying prepared foods and learn how to prepare them yourself. This still leaves room for something special like ice cream. Just learn to limit "prepared."

One thing that I am finally starting to realize is my life and health is just as important as my parents. Caregiving has a tendency to make you disappear and your own wants, needs, health are pushed aside. This is such an easy trap to fall into.

In my case, I have noticed other relatives will look passed my own health issues and continue to ask me questions about my parents health and what I need to do and what doctors they need to go to etc. etc. etc.

Suddenly I look around and notice no one is looking out for me..including myself. I have essentially disappeared.

Tiny... I see this happening to you as well. Please start to focus on yourself and find every way possible to put yourself first. Your dad is being cared for and will probably complain whether you are at his beck and call or not. You only have one life and you shouldn't have to give it all up for your Dad.

Take care of yourself, try to start changing your focus. You are not alone in falling into this trap. Sounds like you got a wake up call.. and so did I.

((hugs))

Tinyblu, I have changed my eating habit leaning more to organic, and I have found, like only001 above had found, you actually eat less. And it taste soooo much better then non-organic. Yes, it is sticker shock, so watch for sales.

Bummer, that is bad timing. I know how you feel, back when I was diagnosis with cancer while starting to help my parents. I was like a deer in headlights, and my primary doctor kept mentioning meds to help with the stress, to which I dug in my heels... oh how I should have taken her advice. I found I was ignoring my own well being to help my folks. The biggee was lack of sleep, and jumping out of my skin every time the telephone rang.

Just experiment with different things to see what works best for you. Honestly, you do feel better eating organic, even a salad can make a difference.

On airplanes, the emergency safety protocol is to put your own Oxygen mask before assisting others.
You have a serious illness. I've been battling autoimmune disease for 13 years. Thank heaven my MIL is in excellent Assisted Living.
Quit your 2nd job and visit your dad briefly twice a week, or longer once a week. Let the other family members do their part, and tune them out if they bitch.
Let your dad's assets run out so he can qualify for Medicaid, which pays for everything.
You must rest, eat well, walk, and reduce stress. Period.

Tinyblu, you are doing an amazing job and huge props to you for taking such good care of your elder. Great advice here and I won't duplicate, except to say that eating better doesn't have to mean organic or expensive. A can of beans is cheaper than a bunch of processed meats and full of fiber, protein, and minerals. Also, you can still share meals with dad...my sweetie makes a big burger with sides of veggies and beans for my dad, and I just eat the sides.

Again big hugs and sorry about your diagnosis. Time to put you first!

Sorry to hear this, Tinyblu. Keep your job(s) if you like them. If you quit and want to go back, it is almost impossible to find a good job after 50. Force yourself to step back, exercise, eat better (it doesn't have to be organic), rest and have fun. Avoid people who criticize you.

I don't even live with my 90 year old mother, but the stress from her stuff makes me feel awful, so I can imagine what you must be going through. She has narcissistic personality disorder and has always been abusive toward me. I feel vastly better when I don't see her often.

Take care!

Look up the Optimum Health Institute in either Austin, TX or Lemon Grove, CA (San Diego area). optimumhealth.org. It is a 3 week program of mind, body, spirit classes, organic raw foods, wheatgrass, colonics, and a total education on how you can heal yourself. I found this place 12 years ago and have been going every year since, just to get away and give my body a clean start again. I too was a caregiver for my mother. For 8 years. And even though she was in assisted living with dementia, I needed the break from the 24/7 stress that encompasses all the work to take care of someone's needs. The first day of the first time I went to OHI (Optimum Health Institute), I called my mother, at the time she was fine, and told her this would be the best money I ever spent on myself. And I was right. I cannot unlearn what I learned there and you can only gain insight from all of the knowledge they impart and the stories of success with all the returning guests who come week after week. If you want to see your health transform right in front of you, book 3 weeks at this place and follow their plan to the letter. You will feel an improvement the first week and it only gets better after that. If you have any questions, let me know.