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: 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.