Believe me, you want to hang onto your independence as long as you can.
i have lived in my folks' house after being out on my own, and while i was grateful to not be on the street, it made me feel like a failure, not to mention the total lack of privacy.
Then, i lived with a relative who sucked the life out of me with daily 4-hour rants recounting everyone who had ever wronged them. Then i lived in a friend's computer room, and couldn't go to bed each night 'til he was done surfing porn. i'm not kidding. And that was often 3am. I really like the guy, we got along great, but I really needed my own space. But that was not an option because i couldn't work enough to pay my medical debts, and also pay rent. It really sucks to be dependent on someone else once you're no longer a child.
i also have friends who are on disability. a couple of them could go back to work, but they instead dig in their heels and spend a lot of time justifying loudly to everyone why they need to be on disability. they, too are dependent, just not on an individual. SO if you can work and not make your condition, work. You will be happier, and way better off in both the long and short run.
Even if you can't work, or you can only work part-time, it's just so important to have a life other than your illness.
It's also important to actually deal with your illness, though- it's such a balance. You have to face whatever reality there is to face and get the thing under control (by whatever means), so that you *can* have a life. The temptation for most of us is to just plow through, nose to the grindstone, and hope it will go away. It won't. Trust me, I know, I tried it this way and it didn't work. I just got sicker, and thinner, and paler, and more anemic, and closer to death, til I was a walking ghost who couldn't get out of a chair on my own, at 25 years old.
Once your body has gone autoimmune on you, you need some kind of intervention, either with drugs. or lots of acupuncture, or faith healing, or whatever method works for you. It's not a cold, or an annoying person- it's not going to go away if you ignore it.
The good news is, you can- just about guaranteed- get it under control.
Wednesday, November 12, 2008
Did I mention I love acupuncture?
Fiends and family know NOTHING about autoimmune disease if they tell you to exercise through the fatigue! That can make things worse!!! that is dumb advice. It shows the lack of understanding of what happens when your body goes autoimmune. Often the things that are good for you- vigorous exercise, immune stimulants, sunshine- are actually quite harmful when you're in the midst of an active autoimmune disorder.
i will tell you this- i've had lupus since 1992, and i feel my best when i get acupuncture. when i'm in an active lupus flare, i get acupuncture once a week. i can back off to every month when i'm stable. it boosts my energy, helps me sleep, reduces headaches, and helped me heal from the stroke. I also take medications, but the acupuncture also helps me reduce the doses.
Not all acupuncturists are the same. Go after one who is trained in both acupuncture and herbs (you probably don't want the herbs but you do want someone who has the extra training), and ask around for a recommendation, like you would for a mechanic. Plug in your zip code here and search: http://www.nccaom.org/find/index.html
i've had this thing for 16 years so i've tried a lot of things- chelation, bodytalk, electronic biofeedback, lymphatic massage, herbs, vitamins, dental procedures... i swear by acupunture. that and diet modification. google "anti-inflammatory diet." generally, you want to eat as lowfat and vegan (no animal products) as possible, also avoiding processed sugar and junk food, such as sodas, esp. diet soda.
when i was off sugar and on acupuncture for 18 months, i felt like me again. i really gotta kick sugar again... meanwhile though i am getting acupuncture and i do chi gong in between visits, something easy, simple, and free i can do at home in any weather that only take 15 minutes a day.
i will tell you this- i've had lupus since 1992, and i feel my best when i get acupuncture. when i'm in an active lupus flare, i get acupuncture once a week. i can back off to every month when i'm stable. it boosts my energy, helps me sleep, reduces headaches, and helped me heal from the stroke. I also take medications, but the acupuncture also helps me reduce the doses.
Not all acupuncturists are the same. Go after one who is trained in both acupuncture and herbs (you probably don't want the herbs but you do want someone who has the extra training), and ask around for a recommendation, like you would for a mechanic. Plug in your zip code here and search: http://www.nccaom.org/find/index.html
i've had this thing for 16 years so i've tried a lot of things- chelation, bodytalk, electronic biofeedback, lymphatic massage, herbs, vitamins, dental procedures... i swear by acupunture. that and diet modification. google "anti-inflammatory diet." generally, you want to eat as lowfat and vegan (no animal products) as possible, also avoiding processed sugar and junk food, such as sodas, esp. diet soda.
when i was off sugar and on acupuncture for 18 months, i felt like me again. i really gotta kick sugar again... meanwhile though i am getting acupuncture and i do chi gong in between visits, something easy, simple, and free i can do at home in any weather that only take 15 minutes a day.
Sunday, November 9, 2008
What' So Bad About Lupus?
A friend asks: "Have you ever spoken to someone and told them you had Lupus only to have them say to you that they know someone who has it that that person is " in Perfect Health?" Then they look at you as if to ask what's wrong with you that you think its so bad. Its aggravating to say the least."
The first and most obvious answer is this: You can't be in perfect health and have a diagnosis of a chronic illness. That's just so obvious. If they were in perfect health, their diagnosis would be "perfect health." Not "lupus."
Secondly, you can't see lupus, so how do you know by looking at someone how healthy they are? Maybe you only see them on their good days, the ones when they are up, dressed, made up,. and out and about.
It reminds me of how we look at other people's relationships and think "oh their marriage is perfect." then we're stunned when they split up.
From Douay-Rheims Bible 2 Corinthians
For we dare not match, or compare ourselves with some, that commend themselves; but we measure ourselves by ourselves, and compare ourselves with ourselves.
To borrow some wisdom from 12-step programs, don't let this person live rent-free in your head. Ultimately what matters is being at peace with yourself and your choices. If you know you're doing what you need to do, and you believe you're living the best life you are able to give your particular case of lupus- we are all so different- then it really ultimately doesn't matter what this person thinks. Because they're not living with it.
You can get educational pamphlets from the Lupus Foundation or the Alliance for lupus research if you want to educate someone and have a piece of lit written by a third party, giving your point of view some credibility.
But if you want a short-term solution on how to shut this person up- and who wouldn't?- tell her "that's interesting. I know a person with lupus who had a stroke and kidney failure." (me, by the way).
The first and most obvious answer is this: You can't be in perfect health and have a diagnosis of a chronic illness. That's just so obvious. If they were in perfect health, their diagnosis would be "perfect health." Not "lupus."
Secondly, you can't see lupus, so how do you know by looking at someone how healthy they are? Maybe you only see them on their good days, the ones when they are up, dressed, made up,. and out and about.
It reminds me of how we look at other people's relationships and think "oh their marriage is perfect." then we're stunned when they split up.
From Douay-Rheims Bible 2 Corinthians
For we dare not match, or compare ourselves with some, that commend themselves; but we measure ourselves by ourselves, and compare ourselves with ourselves.
To borrow some wisdom from 12-step programs, don't let this person live rent-free in your head. Ultimately what matters is being at peace with yourself and your choices. If you know you're doing what you need to do, and you believe you're living the best life you are able to give your particular case of lupus- we are all so different- then it really ultimately doesn't matter what this person thinks. Because they're not living with it.
You can get educational pamphlets from the Lupus Foundation or the Alliance for lupus research if you want to educate someone and have a piece of lit written by a third party, giving your point of view some credibility.
But if you want a short-term solution on how to shut this person up- and who wouldn't?- tell her "that's interesting. I know a person with lupus who had a stroke and kidney failure." (me, by the way).
Monday, October 27, 2008
lupus and money
Universal health care. Poor Hillary Clinton saw this issue as being of utmost importance in 1993. Everyone criticized her and shot down her proposals. She has taken a lot of flack for being a powerful smart woman, and the idea was a head of its time. *She* was ahead of her time- but then, someone had to open the door to ideas like this one.
We are, as Obama has stated, the only industrialized nation in the world who does not provide health care for its citizens.
I've had my finances destroyed 3 times because of lupus. Not just the not being able to work for a year at a time, but the medical (and life) expenses that pile up while you're not working. I spent my savings, I emptied out my mutual funds, and then I went into debt. 3 times. For a year, I lived in a friend's computer room, sleeping on an air mattress with my things in storage while I tried to get my life back together.
I have a friend who lives in England who has cancer. He's paying basically nothing for his treatment, and getting at least as good care as any of us over here would get.
He's walking around in a dream-like state trying to deal with the illness, working as much as his body will allow him. But *not* having that added stress (which makes your health worse, I might add) of wondering if you'll lose your home and or go bankrupt because of the illness. After 16 years of lupus repeatedly destroying my savings, I can't imagine what a relief it would be to "only" have to deal with the illness! Well, actually I can. I was added to my husband's corporate health insurance this year, and it is *so* much better than Medicaid or medicare. I am thanksful for both fo those insurance programs, as they covered me once I was no longer able to get insurance (pre-exiting condition), but unfortunately, the reimbursement from those programs is no so low that few doctors are accepting either of those anymore. And the prescription covereage on medicare is lousy. Last year I paid $6000 out of pocket for prescriptions- and I ahd insurnace!
Further, I am still concerned that if me hubby loses his job (they laid off 800 people last week), I could be left with "just" medicare again, and back to paying $6000 out of pocket a year again.
Did I mention that Americans pay more for the same drug than any other country, and that our government made it illegal for people to buy drugs in Canada and bring them back?
Let's hope our government finally makes health care affordable and accessible to all. I'm in good shape this year, but I haven't forgotten that many people are not in good shape, and I'm only one hubby's layoff away from not being good shape myself. Hoping and praying for big changes for the good of our country.
We are, as Obama has stated, the only industrialized nation in the world who does not provide health care for its citizens.
I've had my finances destroyed 3 times because of lupus. Not just the not being able to work for a year at a time, but the medical (and life) expenses that pile up while you're not working. I spent my savings, I emptied out my mutual funds, and then I went into debt. 3 times. For a year, I lived in a friend's computer room, sleeping on an air mattress with my things in storage while I tried to get my life back together.
I have a friend who lives in England who has cancer. He's paying basically nothing for his treatment, and getting at least as good care as any of us over here would get.
He's walking around in a dream-like state trying to deal with the illness, working as much as his body will allow him. But *not* having that added stress (which makes your health worse, I might add) of wondering if you'll lose your home and or go bankrupt because of the illness. After 16 years of lupus repeatedly destroying my savings, I can't imagine what a relief it would be to "only" have to deal with the illness! Well, actually I can. I was added to my husband's corporate health insurance this year, and it is *so* much better than Medicaid or medicare. I am thanksful for both fo those insurance programs, as they covered me once I was no longer able to get insurance (pre-exiting condition), but unfortunately, the reimbursement from those programs is no so low that few doctors are accepting either of those anymore. And the prescription covereage on medicare is lousy. Last year I paid $6000 out of pocket for prescriptions- and I ahd insurnace!
Further, I am still concerned that if me hubby loses his job (they laid off 800 people last week), I could be left with "just" medicare again, and back to paying $6000 out of pocket a year again.
Did I mention that Americans pay more for the same drug than any other country, and that our government made it illegal for people to buy drugs in Canada and bring them back?
Let's hope our government finally makes health care affordable and accessible to all. I'm in good shape this year, but I haven't forgotten that many people are not in good shape, and I'm only one hubby's layoff away from not being good shape myself. Hoping and praying for big changes for the good of our country.
Thursday, October 23, 2008
Marriage and lupus
Being married can be both wonderful and stressful at the same time.
I was surprised by the guilt one feels when you realize that marriage is a lot of work- like you think you should be all sunshine and happiness, but now you realize- crap! there's a lot more cleaning and cooking to do! And, don't want to complain about it, but there is a big time investment in learning to communicate with your significant other, and making sure they're happy and the relationship is healthy.
And let's not forget about how stressful the actual process of getting married is! Oy! Men may never understand this one (unless they're gay, then they totally get it).
Every time my hubby tells me our wedding day was the happiest day of my life, I smile and say that's sweet. because i am really glad that he was so happy to be marrying me, and that his wedding day was perfect. But I was totally stressed out! We were supposed to have a casual rehearsal dinner, but then i got word my older sister had bought a "hot slinky" dress for the occasion, so i had to scrounge up a nice dress on short notice. Not acceptable for the bride to be the most casually dressed person in the room!
Between one of my bridesmaids making sure I knew she hated her bridesmaid's dress ... or people complaining because they would turn around and the bartender would throw out their drinks so my parents would have to pay for another one... or me having to decide when to send everyone upstairs to dinner, or being dragged outside to take pictures while leaving other folks inside, or not being able to get my bustle to work (i had 6 people working on it during the reception, finally went to the first dance with my train all over the floor)... My decision-making and fire-putting-out was not over til we reached our honeymoon destination.
I would marry my hubby all over again in a second, but I wouldn't want to go through that wedding planning thing twice. the gown was nice, the groom's a keeper, the presents were nice, the pictures are sweet, but i never want to undertake such a huge party again. Too many decisions, too many people to try and make happy, too much stress. And stress is *very* bad when you have lupus, especially in large long sustained doses laden with high emotions. If I had to live it over again, i'd hire a wedding planner. Without even blinking.
I almost forgot to mention that the original date for the wedding was october 2006, but we didn't get married 'til June, 2007. I landed in the hospital (with lupus) 6 weeks before the original date, because of the stress. So many freaking decisions and so much drama. We had to move the date out by 8 months (i wanted a year so my hair could grow back after being inundated with prednisone in the hospital) but other folks involved would only go as far as June 30. Which weirdly is my Mom's birthday and Mom and Dad's wedding anniversary. And for some reason we had to sing happy birthday to one of the children attending not once but 3 times during my wedding weekend, including at the actual wedding (but not for my mom?).
Once married, i realized the housecleaning and cooking was on me. Before he realized it bothered me, my hubby used to invite people over then says "Oh we'll just order a pizza, and they can sit on the floor. if they don't like the mess or lack for furniture, screw them!" He didn't realize ('til I told him) that this reflects on *me* now, not him. It still always reflects on the woman, an old pre-women's lib relic. He gets it now, but only after inviting people over several times and watching me freak out trying to come up with edible food and make the house look habitable (I'm really not much of a cook). Now, I say "OK I'll clean toilets, you do sinks. i'll sweep, you vaccuum." etc. Keeps me from being resentful, and he's totally cool with it.
On the flip side, he has wound up with the traditional role of provider, paying the mortgage, all the bills, and I sporadically contribute what I can. I'm sure being breadwinner for two is an amount of stress I can't even imagine. Or handle.
So, now we got past all those initial hurdles of the wedding planning, the sorting out of gender roles, and learning to communicate with each other... there are tons of great things about being married. Many more pluses than minuses. Having a best friend who you live with, someone to share all the high and low and in between points of life with. Through sickness and health, for better and for worse, having a real home to come home to (and we adopted the sweetest dog ever born). After all that initial craziness, being married is far less stressful (assuming you get a great spouse of course) than being single.
Got thought on this? Leave a comment.
I was surprised by the guilt one feels when you realize that marriage is a lot of work- like you think you should be all sunshine and happiness, but now you realize- crap! there's a lot more cleaning and cooking to do! And, don't want to complain about it, but there is a big time investment in learning to communicate with your significant other, and making sure they're happy and the relationship is healthy.
And let's not forget about how stressful the actual process of getting married is! Oy! Men may never understand this one (unless they're gay, then they totally get it).
Every time my hubby tells me our wedding day was the happiest day of my life, I smile and say that's sweet. because i am really glad that he was so happy to be marrying me, and that his wedding day was perfect. But I was totally stressed out! We were supposed to have a casual rehearsal dinner, but then i got word my older sister had bought a "hot slinky" dress for the occasion, so i had to scrounge up a nice dress on short notice. Not acceptable for the bride to be the most casually dressed person in the room!
Between one of my bridesmaids making sure I knew she hated her bridesmaid's dress ... or people complaining because they would turn around and the bartender would throw out their drinks so my parents would have to pay for another one... or me having to decide when to send everyone upstairs to dinner, or being dragged outside to take pictures while leaving other folks inside, or not being able to get my bustle to work (i had 6 people working on it during the reception, finally went to the first dance with my train all over the floor)... My decision-making and fire-putting-out was not over til we reached our honeymoon destination.
I would marry my hubby all over again in a second, but I wouldn't want to go through that wedding planning thing twice. the gown was nice, the groom's a keeper, the presents were nice, the pictures are sweet, but i never want to undertake such a huge party again. Too many decisions, too many people to try and make happy, too much stress. And stress is *very* bad when you have lupus, especially in large long sustained doses laden with high emotions. If I had to live it over again, i'd hire a wedding planner. Without even blinking.
I almost forgot to mention that the original date for the wedding was october 2006, but we didn't get married 'til June, 2007. I landed in the hospital (with lupus) 6 weeks before the original date, because of the stress. So many freaking decisions and so much drama. We had to move the date out by 8 months (i wanted a year so my hair could grow back after being inundated with prednisone in the hospital) but other folks involved would only go as far as June 30. Which weirdly is my Mom's birthday and Mom and Dad's wedding anniversary. And for some reason we had to sing happy birthday to one of the children attending not once but 3 times during my wedding weekend, including at the actual wedding (but not for my mom?).
Once married, i realized the housecleaning and cooking was on me. Before he realized it bothered me, my hubby used to invite people over then says "Oh we'll just order a pizza, and they can sit on the floor. if they don't like the mess or lack for furniture, screw them!" He didn't realize ('til I told him) that this reflects on *me* now, not him. It still always reflects on the woman, an old pre-women's lib relic. He gets it now, but only after inviting people over several times and watching me freak out trying to come up with edible food and make the house look habitable (I'm really not much of a cook). Now, I say "OK I'll clean toilets, you do sinks. i'll sweep, you vaccuum." etc. Keeps me from being resentful, and he's totally cool with it.
On the flip side, he has wound up with the traditional role of provider, paying the mortgage, all the bills, and I sporadically contribute what I can. I'm sure being breadwinner for two is an amount of stress I can't even imagine. Or handle.
So, now we got past all those initial hurdles of the wedding planning, the sorting out of gender roles, and learning to communicate with each other... there are tons of great things about being married. Many more pluses than minuses. Having a best friend who you live with, someone to share all the high and low and in between points of life with. Through sickness and health, for better and for worse, having a real home to come home to (and we adopted the sweetest dog ever born). After all that initial craziness, being married is far less stressful (assuming you get a great spouse of course) than being single.
Got thought on this? Leave a comment.
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