Sunday, November 16, 2008

Fixodent and forget it: lessons from a denture commercial

In 2002, I had a major health fiasco- and had no insurance. I had lost my insurance after being fired from my job for being sick. So I went to a teaching hospital, where they took indigent patients (indigent= no money. Not to be confused with indigenous, which is "native people," such as Aborigines or Native American Indians. Although I was born in a hospital, so I guess I was indigenous as well...)

You're not allowed to walk around much in the hospital. Which is quite torturous when you're hopped up on prednisone and want to jump out of your skin. Which, come to think of it, is probably why the windows in hospitals don't open. I entered the hospital shuffling in with a cane and left in a wheelchair. After 8 days of lying in bed, my legs were completely atrophied. Of course, this happens to astronauts too, so I was in good company.

So, after having the physical therapist put a leash around my waist and remind me how to walk for future attempts, I was wheeled out, and my follow-up appointments with the kidney doctor were set at the indigent clinic (indigent= no money. Remember the no money no insurance thing- it's key to the next part of the story). Well the clinic sees all its patients on either Tuesday or Thursday. I was a Tuesday patient, and all of us indigents had the same appointment time: 9am. And it was first-come, first served, so we all showed up at 7:30am for a 9:00am appointment. At 9am, the would start calling us to get our weight and blood pressure, then back to the waiting room, all of us with kidney failure, all of us sitting there usually until noon before being seen, with the water draining down to our ankles as our legs swelled bigger by the hour. I already had feet so swollen I could only wear slippers.

The final insult was that every time I went, I had a different doctor. So every single time, I had to give my entire medical history and re-live all the bleak dark traumatic crap I was trying so hard to not think about, like a crime victim having to testify over and over. About the 3rd time, I had had enough. I brought in a 13-page typed medical history with all my illnesses, allergies, symptoms, surgeries, corresponding dates, and the names and addresses of all the doctors I could remember. I handed it to the new doc and he said "oh, no. I have to take it orally." And I said "Why? So you can pretend to have a rapport with me?" I mean it's not like he was going to be there next month, and it's not like the next doc was going to be able to read anything he wrote on my chart. Furthermore, when you're on 9 drugs, your memory is not exactly tack-sharp.

While my Mr. one-night-stand of a doctor wasn't interested in my hours of meticulous record compilation, I did create a valuable resource that other folks do find useful, especially alternative practitioners such as acupuncturists. A lot of us with chronic illnesses do keep a health file of our own, because if you move or go to several specialists, or both (like me- although I now have insurance and get to see the same doc every appointment, I've moved a *lot*, which means changing doctors a lot)... You really have to be the keeper of your own file.

Get copies of your labs if you can, and keep them. The HIPPA laws require doctors to give you copies of your file, though they are allowed to charge up to $2/ page for them. Doctors (even those who actually do have a rapport with you) routinely throw records away after 7 years, and then they are *gone.* And that leaves you in the position of having to re-live the crime all over again in agonizing detail.

When I was 6, we moved away for one year. In our new neighborhood, we had to walk a mile each way to school and back, and again at lunchtime. Every morning, my mom made me recite our address. To this day, I remember it, in the sing-songy way I used to play it back to Mom every morning. 390 32nd street, Boulder Colorado, 80303. I was very happy in Boulder, so having that address in my head brings back nothing but sweet memories. But I have no desire to have a sing-songy list of every health problem I've ever experienced rattling around in my consciousness like an never-ending nightmare. This is the real reason I made my health file, so that, in the words of the denture adhesive "Fixodent and forget it," I can write it down, get it out of my brain, and think about something else. Like 390 32nd street.

Wednesday, November 12, 2008

Declaration of Independence

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.

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:

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).