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.

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.

Monday, October 20, 2008

to work or not to work

very cool idea for a book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend!"

I watch Suze Orman a lot, and she mentions something I had a hard time putting my finger on, which is if you decide to stop working for whatever reason, illness or not, and depend entirely on your spouse, a couple things happen. One, you lose some or all of your power in the relationship. Two, you limit your options- it's harder to get back in the workforce than it is to remain in it. Three, you find you have less to talk about with your partner, and maybe needier.

Now, granted, I had an extremely wonderful non-working year after having a stroke, after I got my pain under control, of course. I spent the year writing songs, hanging out with friends and being creative. I felt very alive.

So I don't think you need a job to be interesting or to have a full life.

But eventually, I had to work- I was not married and even with medicaid, I still had expenses.

And now that I am married, my hubby offers to pay for everything(!) which is awesome, but I still feel the need to work. Fortunately, I can do what I do part-time, so it's not all-or-nothing. If I had to go work full-time in a high-stress job, I'd be in the hospital in 2 months.

So, it's an individual decision, and one that can change over time.

I don't have a definitive opinion on working or not, as I do on biopsies, because people's severity of lupus is so different from person to person, and even from year to year with the same person. But I do think most of us, left to our own devices, with no structure, nowhere to be, will just sit in our PJs and fritter the day away, and not feel too good about it after a while. It sounds great in theory, but once you've done it, you realize most of us don't have the discipline to structure our own day, every day, with no outside motivating force, like someone expecting you to be somewhere. The only reason I was so motivated during my year off, was that I was fighting for my life, fighting to get back everything I lost during the stroke, and fighting to beat my prognosis of needing dialysis and kidney transplants within 5 years. i was highly motivated to beat the odds, because I've seen the results of those who have to go through dialysis every other day, and the results of folks who never recover from strokes. So I had those motivating factors, and I looked so horrible, so pale, anemic, weak, hair falling out, puffy prednisone face, that I desperately needed something to bury myself in, so I lost myself in the creativity of writing songs.

Now that I look mostly like myself and am not so frantically fighting the near-impossible, no, I'm not nearly as motivated and I don't always use my free days well. So I work part-time, and I feel very good about that. I think keeping one foot in the workplace is a great compromise for me, because if -God forbid- anything happened to my husband I wouldn't be totally lost financially. And right now, we don't really need whatever money I earn, so it can serve as emergency money (if God forbid I end up in the hospital again) or savings. So that's where I'm at now. I tried for the longest time to work full-time and I realized it's just too much for me. I've gone into near-kidney failure (30% function) 3 times now. Now I just do a few shows a month (then sleep all day the next day) and teach guitar one afternoon a week. I feel like I have a life, but I'm not pushing myself into relapse. A tricky balance, but after 16 years with this diagnosis, I'm starting to learn the deep meaning of the serenity prayer: God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. All three sentences, so important.

Maybe next time I'll go further into how other tools from the 12-step program are useful in dealing with chronic illness. Because really, alcoholism is also a chronic illness, too. We can certainly learn from them.

Friday, October 17, 2008

War on War- give peace a chance!

I've gotten the stomach flu twice since getting lupus and lost 3 weeks to it. i was in the bathroom for a week both times, and shaky and wornout for the next 2. and let's just say i'll never eat chocolate chip ice cream again.

I don't know if our immune system is really stronger, as is suggested by some doctors (those with immune systems having "hyperactive" immune systems) or if it's just confused, and going after the wrong things.

Columnist Dr. Paul G Donahue, MD, says "Lupus isn't a blood disease. It is more like an illness, such as rheumatoid arthritis. It's one of those many illnesses where the immune system turns against its own body. It produces a slew of antibodies — immune system grenades — and tosses them at many organs."

Most people in alternative medicine would say our bodies are overloaded with toxic stuff - chemicals pesitcides, colorings, etc. That are now part of modern life (autoimmune disease rates have tripled in the last 4 decades, so i don't think it's genetic!)

So, grenades. Good metaphor. Maybe it's like the war on terror. While we're distracted fighting in Iraq (lupus/ attacking our own healthy tissue because it's been infiltrated by foreigners), other terrorist cells (cells! ha!) are sneaking around in other parts of our bodies wreaking havoc. Sadly i don't think you can win a war on terror. Best we can hope for is a tenuous peace, which is the same we hope for with lupus. i'd love to eradicate it, but i think the best we can hope for is a long deep or even permanent remission.

so why do i think we get sicker longer with things like the flu? well for one thing, out defenses are down if we're on immune suppressants such as prednisone, plaquenil, cellcept, etc.- IOW most of the drugs that are thrown at lupus. If not the drugs, then the war on terror theory. Like an army stretched too thin, our T cells can only be in so many places at once, then it runs out of resources. Maybe a combination of both.

Those in alternative medicine suggest, and my experience has borne this out, that reducing irritants helps lessen symptoms as well as reduce the needed amount of meds to control lupus and other autoimmune diseases. It is commonly suggested to go on either a gluten-free, yeast-free, or low-fat vegan diet. My 18 months on the Candida diet, I felt great and I was my ideal weight. I fell off the wagon, and while I try to at least limit my gluten intake, it really needs to be a completely gluten-free diet to make any difference.

Jenny McCarthy has just released a book about her experience healing her son from Autism. His autism set in the moment he received a large dose of multiple vaccines, and over the course of several years on a gluten-free, dairy-free diet (watch for hidden dairy and gluten in many products), and much unconditional love, he came out of it and is now a loving, outgoing child. The Center for Disease Control dismisses her amazing story as "anecdotal." Anecdotes are where breakthrough science begins, if it is sincerely interested in healing (and not controlled by those who want to sell us drugs and vaccines). Jenny refers to her son's autism as both "autism" and a "vaccine injury," and while she hesitates to say he is healed, because she feels that his autism could be re-triggered by environmental and dietary toxins, she does say he is recovered. A tenuous peace.

I believe we can find a tenuous peace with lupus and be on few or no drugs. But we have to be willing to make some tough choices and be disciplined about our diets, and to experiment a bit 'til we find what works for us. It's hard work (who wants to give up pizza?), and some folks are going to think you're crazy. But in my experience, being sick is hard work, even more people think you're crazy (hypochondriac anyone? lazy? all in your head?). And it sucks a lot more.