let us dance along the way ...

In the name of the Reverend Martin Luther King ... sing ...

Sat, 16 Jan 2010 13:36:56 GMT

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30 Things About My Invisible Illness

Sun, 13 Sep 2009 14:47:30 GMT

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Bipolar II and PTSD (as a result of witnessing domestic violence; verbal, emotional and sexual abuse; long-term bullying; and living with an alcoholic parent)

2. I was diagnosed with it in the year: Diagnosed with depression and PTSD in 2002; after consulting with a psychiatric nurse practitioner (who took a complete mental health history for the first time in my life) in 2007, I got the BP2 diagnosis.

3. But I had symptoms since: Childhood. No, really. I remember my first episode of suicidal depression when I was 10 or 11, and since I was really small I've had symptoms that are now recognized as PTSD.

4. The biggest adjustment I’ve had to make is: Accepting that I do have an illness that is lifelong, and that even though I've tried everything else under the sun, antidepressants and mood stabilizers are the only thing that have kept me functional enough to work on the PTSD issues.

5. Most people assume: That because I don't "act bipolar" I can't be; that because I can function at work and in life that I can't really be ill.

6. The hardest part about mornings is: When I'm feeling depressed, just the act of getting out of bed.

7. My favorite medical TV show is: I used to love M*A*S*H and St. Elsewhere. I've lately enjoyed shows like Trauma: Life in the ER and Mystery Diagnosis.

8. A gadget I couldn’t live without is: My computer, because I've been able to find online support groups that have kept me going when there aren't face-to-face support groups available in the area.

9. The hardest part about nights is: Body memories of the abuse and the anxiety and physical pain that goes along with them.

10. Each day I take 3 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried almost every one to treat my depression, and found to my dismay that none of them had any significant effect. I've found that massage therapy done in a safe environment can help me reconnect with my body, and as long as the massage therapist doesn't mind that I occasionally break out in tears while she works on me, that's a bonus.

12. If I had to choose between an invisible illness or visible I would choose: I'd rather not have either, but I think I'd be more validated if people could actually SEE something wrong with me.

13. Regarding working and career: I've been blessed to be able to hold a job and build a career, which is more than many people with my illnesses have been able to do. I don't take that lightly.

14. People would be surprised to know: How much I've really suffered because of these illnesses because, having lived with them ever since I can remember, I'm programmed like a robot to do my daily tasks and pretend to be happy or content.

15. The hardest thing to accept about my new reality has been: That I actually do have a limited number of "spoons," and if I overdraw my "spoon account" I'll suffer for it the enxt day.

16. Something I never thought I could do with my illness that I did was: "Come out of the closet" with it.

17. The commercials about my illness: Piss me off, because they contribute to the myth that psychiatric medications are overprescribed and that depression isn't real. And that Abilify commercial where they try to get people to go to their doctor and ask for an atypical antipsychotic mood stabilizer because they're still depressed--don't even get me started.

18. Something I really miss doing since I was diagnosed is: Being able to stay up all night playing D&D or talking with my friends without having my mood take a nose dive, being able to travel without becoming utterly exhausted.

19. It was really hard to have to give up: Well, it wasn't really hard to give up, but I do miss the freedom to party my ass off if I want to. Alcohol overindulgence + psych meds is a VERY bad combination.

20. A new hobby I have taken up since my diagnosis is: Crocheting. I don't know if this is due to the diagnosis, but I do know that if I'm doing something that occupies my mind and hands, it makes it easier for me to cope with the anxiety and urges to self-injure.

21. If I could have one day of feeling normal again I would: I'm lucky that I feel "normal" about half the time, now that I'm taking the appropriate medications. The childhood trauma stuff is generally responsible for the times when I don't feel "normal," and during those times I really miss not wanting to crawl out of my skin, not having to remind myself to breathe, and not being triggered by random things.

22. My illness has taught me: That because I don't act histrionic and "crazy," and because my family is largely in denial (due to their denial about their own trauma and mental health issues) that anything could possibly be wrong with me, I can't expect support or validation from them. This has been a very sad and painful lesson to learn.

23. Want to know a secret? One thing people say that gets under my skin is: You mean I have to pick just one? There are actually a bunch of things people say that get under my skin, but here are a select few:

Psychiatric medications are a "chemical lobotomy."

Psychiatric medications are just happy pills, and they keep you from dealing with your real issues.

If you [had sex/smoked pot/exercised more/accepted Jesus Christ as your personal savior/etc.], your depression would disappear.

Why can't you Just Let It Go?

I understand what you're going through. But [insert name here] has it worse than you because of [insert situation here].

Cheer up!

24. But I love it when people: Really listen when I talk to them. Understand just how much courage it takes me to disclose my true emotional state and feelings and offer support without qualifiers or just plain wrong-headed and thoughtless statements. Don't offer me advice about what I "should" do. Allow me the freedom I need to hold off on making major decisions until I feel better.

25. My favorite motto, scripture, quote that gets me through tough times is:

"For all its sham, drudgery, and broken dreams, it is still a beautiful world." (from Max Ehrmann's poem "Desiderata")

Childhood trauma: It's the gift that keeps on giving!

If ignorance is bliss, you must be orgasmic.

26. When someone is diagnosed I’d like to tell them: Try not to be shamed out of getting the treatment you need. Do your research on your illness--I'd recommend PsychEducation.com as an excellent resource for information on Bipolar II. Find a therapist with whom you feel safe and make a commitment to really work on your issues; it's really easy to avoid it if you don't have a therapist who'll do his/her part to keep you on track.

27. Something that has surprised me about living with an illness is: That having really comprehensive and well-coordinated care makes the management of that illness much easier. That I'm not alone in dealing with this illness. Now that I'm no longer in denial about it, just how much energy it takes even to go about my daily life sometimes.

28. The nicest thing someone did for me when I wasn’t feeling well was: Let me cry on their shoulder and just held me.

29. I’m involved with Invisible Illness Week because: Invisible illnesses affect more people than you'd ever imagine, and it seems like mental illnesses are even more invisible, especially if people who appear to be functional are suffering from them.

30. The fact that you read this list makes me feel: Scared as hell that I'll be labeled as "crazy" and therefore anything I say will be rendered invalid. Scared that my family won't believe me (because this list is the first time they're seeing not only my diagnosis but the effects that my trauma and my illness have on me every day) and think I'm using my illness as a cop-out. Conversely, I feel proud that I've found the courage to "come out," and maybe having done so, there may be some other people who feel less alone when seeing my list.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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There's been a lot of talk about this song, maybe too much talk...

Tue, 18 Aug 2009 19:44:59 GMT

This song is not a leftie song. This song is a decent human being song.

I talk a lot about health care reform on my Facebook page, and sometimes people ask me why I care so much about it. I mean, I'm all right, right? I have a job that provides me with health and dental insurance. I have parity in cost for treatment of my mental illness. Why would I want to change anything--after all, it might hurt me.

You wanna know why I care so much about health care reform? Well, here you go:

When I was a child, after my parents divorced, my mother got us on Medicaid to take care of our doctor visits and the like. We kids also got dental care. But she didn't. She never had very good teeth, and she never really had the money to do anything about it. As the years went on, her teeth got worse and worse until they were literally rotting away in her mouth. Sometimes when I went over to visit her, I could see that she had an abscess. She must have been in incredible pain. I tried to help her. I gave her money to go to the dentist. But she didn't want to go, because she knew it would be thousands of dollars in care and neither she nor I had that kind of money. What I didn't know is that her abscesses, even after they appeared to have gone down, had continued to grow internally and resulted in a chronic low-grade sinus infection. Eventually her body could no longer fight off the increasingly systemic infection, and after an ambulance ride to the hospital with chest pains and trouble breathing, the doctors did scans and found out that the infection had even gone into the bones of her skull. She almost died because she couldn't afford dental care.

I had a friend who needed a pancreas transplant and ...was told she had to put down a deposit of $100,000 to even get on the list. She was on Medicaid, and Medicaid wouldn't pay for it since the transplant had to be done outside the state--and apparently having a long, documented history of wildly uncontrollable diabetes that had already resulted in her losing half of her vision didn't make the surgery medically necessary enough. By the time she finally got her transplant approved, it was because she was in complete renal failure and needed a new kidney, too.

I've seen kids with huge cavities in their teeth because even if their parents have Medicaid, there are very few dentists within an hour of where I live who actually take Medicaid. Even if their parents have functional cars to get them there.

When I was in grade school, one of the kids in my town amputated his own toe with a jackknife because it got severely infected and gangrenous. He was from the poorest family in the area, and his parents couldn't afford or access health care, either.

This kind of shit Would. Not. Happen. in a place where health care was universally accessible.

I'm certainly not coming from the right-winger "bourgeois state-ist librul" point of view here. I've known dire poverty. I know what it's like to be sick or seriously injured and avoid going to the hospital because you know you can't afford the bill.

For years I endured periodic episodes of severe gall bladder pain because I didn't have health insurance. I knew it was a gallstone (and a big one at that) because it had been discovered in an initial intake X-ray at a chiropractor's office. For most of my adult life, I "gutted it out" through bouts of crippling depression on my own because I couldn't afford therapy.

Now I have health and dental insurance through my employer. Yeah, I'm OK--for now, provided health insurance premiums don't rise by the 700% or so forecast over the next 10 years--but I know all too well what it's like not to be one of the lucky or the blessed. I've seen the horrific suffering that people experience because they can't afford health care.

We need to join the rest of the civilized world and make health care a basic human right, not a privilege of the rich. Health care should be a non-profit business, not one dependent on the whims of its stockholders.

Fuck the health insurance industry douchenozzles who fear-monger, misrepresent, and outright lie--and pay off Senators and congresspeople to vote the way the insurance industry wants them to.

Fuck the lobbyists and their "astro-turf" campaigns showing that "The People" don't want health care reform (funny that, since the last survey I read said 85% of Americans want a public option to be part of a health care reform package)

Fuck the people who say, "I've got mine, so screw you."

Fuck the people who believe that poor people don't deserve decent health care.

Fuck Sarah Palin and her "death panel" bullshit.

Fuck the people who whine about the expense of public health care but didn't do a goddamn thing to stop the Bush administration from creating a multi-trillion dollar deficit to fight a war that's done nothing to make America safer.

Fuck the assholes who think it's OK to carry assault rifles outside venues where the President is conducting town-hall meetings.

Fuck the people who think they need to "take their country back" from the first President in nine years who actually won an election through fair means.

You want to take your country back? Why don't you try remembering the real American way. The one where we help each other out and work together to build a better nation. The way to build a better nation is to make sure we can all enjoy life, liberty, and the pursuit of happiness. It's not "I got mine, so screw you!" It's "a rising tide lifts all boats." It's an act of compassion and kindness toward your neighbor or your fellow human being.

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OMG 911!!!

Fri, 14 Aug 2009 12:50:22 GMT

Pop Quiz, kiddies!

Which of the following is an emergency?

A. You're having [insert scary medical symptoms here], you've just called an ambulance, and you'll be on your way to the hospital in moments.

B. Someone hacked your bank account, you're broke, your rent is due tomorrow, and your landlord is a prick who doesn't care why you don't have the rent money.

C. Another member of your family has been grievously injured and is currently in the ER.

D. You're experiencing a severe mental health crisis and you're so messed up you don't know what to do.

E. Your computer isn't working.

If you answered [E], you're my mother.

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Paws and Effect feed on Dreamwidth

Wed, 12 Aug 2009 18:36:13 GMT

The Paws and Effect feed is now live on Dreamwidth. Go to http://pawsandeffect-feed.dreamwidth.org/ and subscribe to the feed. Or just go to my userinfo and scroll down to Feeds, click on the link, and subscribe that way.

There's nothing on the feed right now, since I last updated P&E on Sunday.

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