The Body Chronic

Don't Just Take My Word on Prop 2: Another Body Chronic Speaks Out

2008-10-28T16:43:00.001-04:00

The Body Chronic makes friends with other chronically-minded folks. One of the longest running chronic friends I've had in person (and I mean this in a good "chronic" way), is the subject of this video, put forward by the folks at Cure Michigan. It speaks louder than I possibly could.

Proposal 2 In Michigan--Stem Cell Research: An Issue for The Body Chronic

2008-10-28T14:50:00.002-04:00

I originally posted this on my politics and pop culture blog, Only Baggage You Can Bring. As the election draws nearer, I feel the need to publicize it more.

I expect a lot off bullshit when it comes to ballot proposals. So you can imagine that it's hard to surprise me anymore.

Guess what? I'm surprised. I never thought there would be this much controversy over saying yes to medical research and a better quality of life.

Over the past few weeks, the opposition to Proposal 2 people have been fighting against common sense, dignity and just plan goodness. Mostly funded by the Catholic Archdiocese of Detroit, the No to 2 people have been making such ridiculous and patently false claims that it makes Richard Nixon look like a saint.

Here are the facts from Cure Michigan:

Proposal 2 will provide for safe and ethical research as permitted under federal law;
Proposal 2 will keep in force Michigan’s ban against cloning; and,
Proposal 2 will allow doctors and researchers to use voluntarily donated leftover embryos for finding cures and saving lives. These leftover embryos are currently thrown away as medical waste.

Why is Proposal 2 necessary in Michigan? Because under the current state law, Michigan criminalizes the use of new embryonic stem cells to find cures—researchers can be fined up to $10 million and imprisoned up to 10 years. That means researchers at our top institutions and even private medical research facilities are being forced to make a choice--research and jail or losing time and money.

The No to 2 people are right about one thing--this is a moral issue. This is an issue about whether you want people with severe spinal injuries to have the hope to walk again. This is an issue about whether you want people with chronic illnesses, like me, to live a pain free life. This is an issue about whether you want people with Alzheimer's and Dementia, like Nana Grace, to have a second chance at their golden years. So if you believe in those things, you believe in voting yes to Proposal 2.

Part of the problem now is that people are being fed these lies about Proposal 2 and it's alleged potential for raising tax revenues, allowing unethical use of human embryos and so on--all false claims mind you. The reason this matters--the No to 2 people have more money and captive audiences.

So what can you do? You can donate. You can host a yard sign. You can speak to your family, friends and collegues. But do something and do it now. This is our future. This is our fight.

Don't let us wake up November 5 with a Michigan that is technologically inhibited and without hope. Donate here. And vote YES on Proposal 2.

Daily Inspiration 10/28/08

2008-10-28T07:48:00.000-04:00

Make no little plans; they have no magic to stir men's blood and probably themselves will not be realized. Make big plans; aim high in hope and work, remembering that a noble, logical diagram once recorded will not die, but long after we are gone be a living thing, asserting itself with ever-growing insistence. -Daniel Hudson Burnham

(In honor of the second anniversary of the death of my grandmother, my Nana, Ida.)

Daily Inspiration: 10/20/08

2008-10-20T16:35:00.002-04:00

My work will be finished if I succeed in carrying conviction to the human family that every man or woman, however weak in body, is the guardian of his or her self-respect and liberty. -Mahatma Gandhi

Daily Inspiration: 10/17/08

2008-10-17T07:05:00.001-04:00

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us as equals.

-Winston Churchill

Daily Inspiration: 10/16/08

2008-10-16T10:56:00.002-04:00

The fact that man knows right from wrong proves his intellectual superiority to other creatures; but the fact that he can do wrong proves his moral inferiority to any creature that cannot.
-Mark Twain

(I don't know why, but whenever I feel the need for some wisdom, I turn to Mark Twain.)

Daily Inspiration: 10/15/08

2008-10-15T13:58:00.001-04:00

Old elephants limp off to the hills to die; old Americans go out to the highway and drive themselves to death with huge cars.
- Hunter S. Thompson

Possibly the Biggest Case of a Body Chronic Ever

2008-10-03T15:13:00.002-04:00

Some of you may have heard of the so-called Tree Man--a man in Indonesia who looks as if he is turning into a tree. For years doctors have been puzzled over his condition, wondering what turns his limbs into veritable tree trunks.

It turns out that he too has a chronic illness. He has an immuno deficiency of sorts which led to the HPV-2 virus taking over his body and using it as its own little chemistry set.

His story is unlike many of ours with chronic illness in that it is so visible to the naked eye. But it is like our stories in that the diagnosis was extremely difficult to find. Food for thought.

For more information, check out Treeman: Search for the Cure on Discovery Health, Sunday at 9 p.m.

Daily Inspiration: 10/3/08

2008-10-03T15:11:00.002-04:00

Our greatest glory is not in never falling, but in rising every time we fall. -Confucious

On the occasion of the day after a big tumble for me.

Health Care and The 2008 Election--Issues that Matter

2008-10-02T15:36:00.002-04:00

Check out my sister blog, Only Baggage You Can Bring all week this week for issues about health care and the election. So far we have discussed the candidate's proposals for health care coverage and world HIV/AIDS policies. We'll also be discussing stem cell research and medicare.

Come join the discussion!

Daily Inspiration: 10/2/08

2008-10-02T15:34:00.001-04:00

When this debate is concluded, a motion will be made to lay upon the table the resolution offered in commendation of the administration... We object to bringing this question down to the level of persons. The individual is but an atom; he is born, he acts, he dies; but principles are eternal; and this has been a contest over a principle. -William Jennings Bryan

Daily Inspiration: 10/1/08

2008-10-01T08:30:00.000-04:00

People don't want their lives fixed. Nobody wants their problems solved. Their dramas. Their distractions. Their stories resolved. Their messes cleaned up. Because what would they have left? Just the big scary unknown.
-Chuck Palahniuk

Monday Chronic Roundup:9/29/08

2008-09-29T16:03:00.002-04:00

PCOS/Insulin Resistance/Diabetes

Interstitial Cystitis/Irritable Bowel Syndrome/Pelvic Floor Dysfunction/Vulvodynia

Fibromyalgia/Chronic Fatigue Syndrome

Allergies/Asthma/Celiac Disease

Other

Does talcum powder cause ovarian cancer?

Daily Inspiration: 9/29/08

2008-09-29T04:17:00.000-04:00

If all the rich and all of the church people should send their children to the public schools they would feel bound to concentrate their money on improving these schools until they met the highest ideals. -Susan B. Anthony

Friday Chronic Roundup is Now Monday Chronic Roundup

2008-09-26T13:53:00.003-04:00

Rule 1 for having a crazy life and chronic pain/illness: schedule yourself accordingly. In that vein (pardon the pun), I am moving the chronic roundup to Mondays, so I'll have more time to truly prepare. That way, first thing in the week you'll have the roundup for the previous week.

Sorry for the confusion. And enjoy your weekend!

Daily Inspiration: 9/26/08

2008-09-26T13:52:00.001-04:00

It is better to debate a question without settling it than to settle a question without debating it. -Joseph Joubert

Daily Inspiration: 9/25/08

2008-09-25T09:36:00.002-04:00

Success is that old ABC -- ability, breaks, and courage.
- Charles Luckman

(In honor of McCain "suspending" or "taking a break from" his campaign...if only we could do that to face our issues.)

Daily Inspiration: 9/24/08

2008-09-24T18:35:00.002-04:00

As the end of the century approaches, all our culture is like flies at the beginning of winter. Having lost their agility, dreamy and demented, they turn slowly about the window in the first icy mists of morning,...[then] they fall down the curtains. Charles Baudelaire

Getting the Right Mix: Meds and Time

2008-09-22T17:59:00.003-04:00

One thing that some people are kind of sketchy about discussing is mental illness and what those of us with mental illness issues do to make things right. For the record, I'm an advocate for talking about these things, but I understand and have taken advantage of the right to plead the fifth or just stay silent.

The problem with staying silent is that you learn nothing about what can happen.

I've been on Prozac for about 14 years now off and on (mostly on). Over the years, it has served me well. I have been able to achieve quite a bit that I would have not had the stamina to otherwise. I have made and formed quality relationships. Most importantly, I've been able to keep my greyness (what I call depression) at bay. That is, until more recently.

Over the past few months, I've noticed changes in my ability to control my moods. It's not a psychological problem (the way in which I view and deal with the world) but something more organic than that (inside of me, uncontrollable). Eventually my therapist and a good friend convinced me that it's okay that the Prozac was no longer working--in fact, there are better things out there now than there were before.

What I didn't know until I saw the psychiatrist on Friday was that Prozac can truly have a "shelf life" so to speak. In other words, prozac (and any SSRI) can eventually stop working for someone after a period of years. In fact, the psychiatrist was surprised I got this long of a life out of it. It's called the "Prozac Poop Out" effect.

In order to spare someone else the time of having to look this stuff up, I've compiled a list of resources about this here: Depression Returns with Prozac Poop Out, an FAQ on Prozac Poop Out, and You and Your Antidepressant.

So now to combat the poop out, we are trying to add Wellbutrin into the mix. Apparently it helps remedy the poop out problem in some people. Since Prozac has been good for me for so long, it was worth a shot.

The lesson, though, is this: don't be afraid to talk to someone about your meds. This can be even more trying in cases of mental illness, but it's that much more important. And as always, The Body Chronic is a big supporter of having a good sense of humor about this and every other chronic condition. So don't take offense over the picture I chose...it's important to learn to laugh at yourself.

Has anyone else had this happen? Any experiences with moving past it? Let's discuss!

Daily Inspiration: 9/22/08

2008-09-22T17:58:00.001-04:00

Autumn is really the best of the seasons; and I'm not sure that old age isn't the best part of life. But of course, like autumn, it doesn't last.
-C.S. Lewis

(On the first day of autumn, 2008)

Daily Inspiration: 9/18/08

2008-09-18T13:34:00.002-04:00

A woman who is convinced that she deserves to accept only the best challenges herself to give the best. Then she is living phenomenally. Maya Angelou

A Natural Plumbing Disaster at the Home of The Body Chronic

2008-09-17T16:41:00.002-04:00

This past weekend was supposed to be a celebration. The Mister turned 30 and I threw him a surprise party. He's a good guy who has never had anyone really pay attention to his birthday until he met me, so I figured he deserved it. Plus, he's put up with me for nearly five years...that alone should warrant a party.

In any event, the surprise part went off without a hitch. He was shocked, to say the least.

But then we were both surprised. You can read the full story here, but to sum it up: our basement flooded. Pretty soon the guests were clearing out and we were calling a plumber.

For the past three days we've been doing everything in our power to get the water and moisture out of the carpets and off the walls where water touched. We rented a carpet cleaner immediately and sucked up as much water as possible. We then cleaned any hard surface we could with bleach and disinfectant. Nevertheless, it appears something isn't working.

We have an insurance adjuster coming out Friday and she claims we have coverage for water backup damage. I'm praying this is true.

The worst part is that for two people with chronic allergies, having water in your home--even if you've done your best to clean it up out of the carpets--is not a good idea.

So I thought I'd take this frown of a situation and turn it upside down and provide some helpful links about allergies and mold.

I guess a new house could use new carpet anyhow.

Daily Inspiration: 9/17/08

2008-09-17T15:30:00.002-04:00

Fantasy is a necessary ingredient in living, it’s a way of looking at life through the wrong end of a telescope and that enables you to laugh at life’s realities.
-Dr. Seuss

(Green Eggs and Ham was the first book I read on my own--it took me three hours and I locked myself in my bedroom until I completed the task.)

Daily Inspiration: 9/16/08

2008-09-16T14:21:00.002-04:00

The poverty of our century is unlike that of any other. It is not, as poverty was before, the result of natural scarcity, but of a set of priorities imposed upon the rest of the world by the rich. Consequently, the modern poor are not pitied... but written off as trash. The twentieth-century consumer economy has produced the first culture for which a beggar is a reminder of nothing.
-John Berger

Daily Inspiration: 9/15/08

2008-09-15T15:13:00.002-04:00

Sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory. Susan B. Anthony

(On the occasion of my birthday.)

National Invisible Illness Awareness Week

2008-09-12T14:29:00.002-04:00

This week is National Invisible Illness Awareness Week.

The Body Chronic is dedicated to giving a voice, an ear and a shoulder to cry on (or laugh on) to those of us with invisible illnesses. Just because it's not outwardly visible, does not mean that it fails to impact our lives.

Here are some articles from the coordinators of II Awareness week about invisible illnesses:

And as always, don't forget to check out the sites that feature chronic illness information and support 365 days a year, such as:

Keep it up!

Friday Chronic Roundup: September 12, 2008

2008-09-12T14:12:00.002-04:00

PCOS/Insulin Resistance/Diabetes

A study shows that intensive glucose control in people with Type II diabetes helps control microvascular complications
Can acupuncture help PCOS?
Vitamin K shows promise for insulin resistance reduction in men
A comprehensive study about pre-teen IR and its effects later on
Carb blockers help fight diabetes--I didn't know such things existed really
Hepatitis C patients may have abnormal blood sugar
Is once-a-week Byetta better than the daily?

Interstitial Cystitis/IBS/Vulvodynia/Pelvic Floor Dysfunction

Allergies/Asthma/Celiac Disease

A biomedicine joint research group has been formed to develop drugs to fight cancer and cure pollen allergies
Should pregnant women go to the farm?
Global warming increasing allergies
Is there hope on the horizon for those of us with allergies and asthma
Day care and being exposed to infections early on may help cut allergies and asthma later on in life
Yoga therapy for asthma?
Guidelines for detecting celiac disease

Daily Inspiration: 9/12/08

2008-09-12T07:51:00.000-04:00

The secret to humor is surprise. - Aristotle

Daily Inspiration: 9/11/08

2008-09-11T07:49:00.000-04:00

A late lark twitters from the quiet skies:
And from the west,
Where the sun, his day's work ended,
Lingers as in content,
There falls on the old, gray city
An influence luminous and serene,
A shining peace.

-William Ernest Henley

The Body Chronic Has Been Naughty

2008-09-10T15:36:00.003-04:00

For those of you who I haven't alienated by my lack of posting lately, thank you for sticking around.

For those of you who have strayed due to my lack of posting, I know how you feel.

Life in TBC has been hectic at best. There's been some family drama, mixed with new homeownership and a busy work schedule. At best it's gotten me thinking about stress and TBC, but at worst it has had me neglecting this blog which I truly believe has the potential to do big things. That is, if I allow it.

But I have learned about TBC and I'm able to report some of those findings to you.

Things you learn about TBC while under stress:

You revert to old things. For me it has been a heavy-coffee habit. I used to drink coffee a lot. But randomly over the past few years that desire has diminished and, although I enjoy it, I don't horde it like I used to. Over the past few weeks I have found myself at the office coffeepot more times than I'd like to admit (and somehow every other time I have to be the one to brew a new pot--it's a conspiracy!). But also over the past few months, in my stress, I've also reverted to my writing. I've always wanted to be a writer above all else. It had seemed as if I have given that dream away to the highest bidder. But it turns out I have some juice left in me. I started a new blog dedicated to my life and writing--A Perfectly Cursed Life--and I've found, or rediscovered, a passion. I guess it's more than a passion--it's a survival mechanism.
You can handle more than you think. I thought moving would be hard. I was right. I thought work was getting hectic. I was right. I thought family drama was imminent. I was right. But even though all these things happened at once, I learned that I can take on more in practice than I can in theory. See, if I had a choice about all of those things, I may have chosen not to do them. "It's just too much," I'd probably say. But because I was forced into them, I've come to realize that I am much more capable of enduring multiple cluster-bleeps in my life than I once thought. Which leads me to my next thought...
You do what you have to in order to get by. This one seems fairly simple, if not a given. But it's too true to ignore. I don't like the fact that my current anti-depressant isn't working after 13 years of solid performance. But, I make an appointment to work on that and move on. I don't like the fact that the physical act of moving--even with movers--put me in a lot of pain. But I took the necessary rest and meds to get by. We can adapt, even with chronic illness. Hell, we're probably better at it than most!
You get cranky. I have been a ball of moodiness lately. Of course, some of it was very warranted. But some of it was just a matter of being in pain and being stressed out at the same time. It's hard to live life with a smile on your face when your insides feel like they might explode. It's not an excuse to lash out, but damn it, it's the truth!
You need help. The Mister has been an amazing help throughout all of this. He pretty much planned and executed our move without much if any help from me. He has made sure that the cats are getting fed and the dog is getting treats (though his walks have been scant since the move). Even Mom and Dad have pitched in, helping me paint and clean before we moved. Would I have survived without this? Maybe. But it's nice to be able to ask for and receive help...because you need it. (P.S. Painting a room makes you hurt in places you didn't know existed.)

So look out world and web, TBC is back in business. Life goes on, as does chronic illness--whether we like it or not. We might as well get the best out of it together.

Daily Inspiration: 9/10/08

2008-09-10T15:35:00.001-04:00

Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward. - Kurt Vonnegut

Daily Inspiration: 8/29/08

2008-08-29T08:34:00.000-04:00

And love is not the easy thing The only baggage you can bring Is all that you can't leave behind

-U2
(New house move in today!)

Daily Inspiration: 8/28/08

2008-08-28T08:33:00.000-04:00

Hope is what led a band of colonists to rise up against an empire; what led the greatest of generations to free a continent and heal a nation; what led young women and young men to sit at lunch counters and brave fire hoses and march through Selma and Montgomery for freedom's cause. Hope is what led me here today--with a father from Kenya, a mother from Kansas; and a story that could only happen in the United States of America. Hope is the bedrock of this nation; the belief that our destiny will not be written for us, but by us; by all those men and women who are not content to settle for the world as it is; who have courage to remake the world as it should be.
- Barack Obama
(In honor of his acceptance of the Democratic Presidential Nomination)

Daily Inspiration: 8/27/08

2008-08-27T08:30:00.000-04:00

You begin saving the world by saving one man at a time; all else is grandiose romanticism or politics. Charles Bukowski

Daily Inspiration: 8/26/08

2008-08-26T08:29:00.000-04:00

Philosophers make imaginary laws for imaginary commonwealths, and their discourses are as the stars, which give little light because they are so high. -Sir Francis Bacon

Daily Inspiration: 8/25/08

2008-08-25T09:27:00.001-04:00

A religion, old or new, that stressed the magnificence of the universe as revealed by modern science might be able to draw forth reserves of reverence and awe hardly tapped by conventional faiths. Sooner or later such a religion will emerge. - Carl Sagan

Friday Chronic Roundup: August 22, 2008

2008-08-22T14:41:00.004-04:00

PCOS/Insulin Resistance/Diabetes

Daughters of women with PCOS are at an increased risk of having PCOS (duh)
A test to spot insulin resistance?
A new stody is able to stop aging in mice livers--impacts on insulin resistance.
Just wanted to put it here again: fit and fat do mix.
Very interesting: babies born to mothers with high folate levels and low vitamin B-12 levels are more insulin resistant

Interstitial Cystitis/IBS/Vulvodynia/Pelvic Floor Dysfunction

Nothing new to report: painful bladder syndrome/IC difficult to treat and diagnose

Allergies/Asthma/Celiac Disease

Another bad thing about global warming: more ragweed allergies.
Allergy mechanisms discussed.
Boys outgrow asthma symptoms more/faster than girls
Do Puerto Ricans have a higher rate of asthma?

Mental Health

Does severe depression + antidepressants = bad driving?

Daily Inspiration: 8/22/08

2008-08-22T08:00:00.001-04:00

Language was invented to ask questions. Answers may be given by grunts and gestures, but questions must be spoken. Humanness came of age when man asked the first question. Social stagnation results not from a lack of answers but from the absence of the impulse to ask questions. -Eric Hoffer

Environmental Hazards: Arsenic Causing Type II DIabetes

2008-08-21T11:31:00.002-04:00

That's right folks, apparently trying to eat healthy and stay healthy isn't enough. It turns out environmental poisons, such as arsenic are causing health problems...big chronic health problems.

And guess where we're getting the arsenic from? Our drinking water. So being told to drink a lot of water may, in some weird way, have contributed to our ailments.

It's a shocking story and I hope you take the time to read it. Whether there is anything that can be done about it, is another story.

According to background information in the study, about 13 million people in the United States live in areas with a concentration of inorganic arsenic in the public water supply that exceeds recommended levels.

Well, guess that's a reason to get a bottle of water today.

Daily Inspiration: 8/21/08

2008-08-21T08:00:00.000-04:00

Every now and then go away and have a little relaxation. To remain constantly at work will diminish your judgment. Go some distance away, because work will be in perspective and a lack of harmony is more readily seen. - Leonardo DiVinci

Daily Inspiration: 8/20/08

2008-08-20T08:00:00.000-04:00

One of the tragic ironies of history is that such original and creative geniuses as Buddha and Jesus have been extolled as perfect patterns for all to emulate. In the very struggle to be like someone else rather than to be one's own true self, or to do one's own best in one's own environment, a child is in danger of losing the pearl that is really beyond price - the integrity of his (or her) own soul. - Sophia Lyons Fahs

Daily Inspiration: 8/19/08

2008-08-19T07:36:00.000-04:00

Writing has laws of perspective, of light and shade, just as painting does, or music. If you are born knowing them, fine. If not, learn them. Then rearrange the rules to suit yourself. - Truman Capote

The Thin Line of Fat: Fat and Fit--Health At Every Size

2008-08-18T14:44:00.003-04:00

This article was surprising to some. Saying fat people can be fit is somehow seen as an oxymoron as we've cast aside the fat as unhealthy, sickly, disgusting or otherwise in an attempt to cleanse everything of the different.

Not so fast.

It turns out fat people can be fit after all, supporting years of advocacy by those in the Fat Acceptance and Health At Every Size movements. It seems that one's heart health has less to do with their weight than other factors. Being a size 4 or a size 24 doesn't determine heart health.

I'd like to think that this will finally start to seep in to the science of chronic pain and chronic illness. I cannot tell you how many times I've had doctors use my weight and size as a cop-out to doing any actual doctoring. It was even more frustrating when they used it two summers ago, when I was sixty pounds lighter than I am currently and, ironically, when all my chronic problems came to a head.

All of us fatties have stories about how doctors have used fat to determine the cause of an ailment. Being fat doesn't cause an upper respiratory infection. My weight is not relevant to determine whether I have pink eye. And young girls should not be encouraged to eat less than 1400 calories a day. (All things I have personally encountered.)

So maybe, just maybe, we can start to gain a little ground...or at least keep the ground that hasn't been taken from us yet.

Daily Inspiration: 8/18/08

2008-08-18T14:34:00.002-04:00

Sometimes it pays to stay in bed in Monday, rather than spending the rest of the week debuging Monday's code. - Dan Salomon

Body Chronic On Hiatus: 8/11/08-8/17/08

2008-08-15T08:55:00.002-04:00

Call it summer vacation...We just bought a home and it's been crazy. So TBC is on break. Enjoy some past reads.

What to do When Chronic Conditions Haunt You

A controversial Spa

More evidence for the inflammation theory

Lessons from The Chronic Cat

Forced Allergy Experiment

Friday Chronic Roundup: 8/8/08

2008-08-08T12:11:00.003-04:00

PCOS/Insulin Resistance/Diabetes

Interstitial Cystitis/Vuvlodynia/Pelvic Floor Dysfunction/IBS

The National Institute of Diabetes and Digestive Kidney Diseases and NIH publish on urologic and kidney disorders
IBS or fructose malabsorbtion?
IC and pelvic pain syndromes
The use of TENS units to ease vaginal pain

Fibromyalgia/Chronic Fatigue Syndrome

The possible significance of CFS and Fibro
Acupuncture to treat fibro?
Fibromyalgia: unreal or misunderstood?

Allergies/Asthma

Global warming linked to allergy problems?
Wyndham Hotels to offer allergy-friendly rooms and meeting spaces
What molecule holds the key to allergic reactions?

Mental Health

Type I diabetes patients also are at risk for depression
Exercise does not alleviate anxiety and depression (?????)
Common signs and symptoms of depression

Daily Inspiration: 08/08/08

2008-08-08T11:59:00.001-04:00

Religion without morality is a superstition and a curse, and morality without religion is impossible. Mark Hopkins

Daily Inspiration: 08/07/08

2008-08-07T08:57:00.000-04:00

Where is the justice of political power if it executes the murderer and jails the plunderer, and then itself marches upon neighboring lands, killing thousands and pillaging the very hills? - Kahlil Gibran

Daily Inspiration: 8/6/08

2008-08-06T10:41:00.002-04:00

Daring ideas are like chessmen moved forward. They may be beaten, but they may start a winning game. - Johann von Goethe

Daily Inspiration: 8/5/08

2008-08-05T10:39:00.001-04:00

The biggest danger for a politician is to shake hands with a man who is physically stronger, has been drinking and is voting for the other guy. - William Proxmire

Daily Inspiration: 8/4/08

2008-08-04T16:26:00.002-04:00

Our society is run by insane people for insane objectives. I think we're being run by maniacs for maniacal ends and I think I'm liable to be put away as insane for expressing that. That's what's insane about it.
-John Lennon

Daily Inspiration: 8/01/08

2008-08-01T08:00:00.002-04:00

Love can sometimes be magic. But magic can sometimes...just be an illusion. - Javan

Friday Chronic Roundup: August 1, 2008

2008-07-31T14:15:00.004-04:00

PCOS/Insulin Resistance/Diabetes/Infertility

The "fat gene" talk again
One nutritionist's approach to PCOS treatment
Another hint that tumeric might help Type 2 diabetes
Can metformin or glyburide help prevent Alzheimer's in Type 2 diabetics
The heredity/genetic link of PCOS
Researchers have identified the functional role of the Lrh1 gene in regulating ovulation.

Interstitial Cystitis/Pelvic Floor Dysfunction/Vulvodynia/IBS

What treatments for IC reduce healthcare costs?
Another IBS drug trial moves forward.

Asthma/Allergies/Celiac Disease

Results from heart research to be applied to asthma research
Research on alternative allergy therapies is promising
Does the consumption of nuts during pregnancy contribute to childhood asthma
I guess this is supposed to be grand: people with long term asthma, hay fever or allergies are up to 25% less likely to get the most common type of Non-Hodgkin Lymphoma.

Chronic Fatigue Syndrome/Fibromyalgia/Lyme Disease

Caution: Lyme disease rates are up this summer.

Mental Health

Depression is shown to abate with constant electrical stimulation
Does spanking lead to depressed toddlers?
The work of proteins in DNA that cause depression
Scientists have found the mechanism that causes postpartum depression in mice

The Letter of the Day: is Vitamin D

2008-07-31T14:01:00.003-04:00

The hype around certain deficiencies and in intolerances is usually something to take note of with a grain of salt. The big thing now is celiac disease, and while a good number of people have it, I'm sure doctors are seeing a rash of people who believe they or their children have it as well.

So when this whole Vitamin D deficiency thing came out, I had to say I was skeptical. I'm using skeptical in the most serious way because I think that it's too loose a word. To say that I didn't believe it for a minute would be more accurate. But some bloggers I respected urged on about it, so I figured it couldn't be too bad.

But then I read some of the facts and symptoms. It's not a chronic condition (necessarily), but a deficiency that can be aided and even eliminated.

So, even though I was skeptical, I went out and bought some.

I have been taking the supplement regularly (or at least fairly regularly) for about three weeks now. At first I thought I noticed drastic changes, but over time those faded. (The changes included less fatigue, greater strength and less muscle weakness. ) But I have noticed some benefits that have lasted. For a time, I was a little less moody (when aided by my Prozac which I missed for over a week because of a lapse in prescription) . The fatigue thing faded some. I don't think it's a cure all, but I think it did help in this area.

So have any of you tried a vitamin D supplement? What were your results? Am I just making up benefits that weren't really there?

Daily Inspiration: 7/31/08

2008-07-31T13:54:00.001-04:00

To live with the conscious knowledge of the shadow of uncertainty, with the knowledge that disaster or tragedy could strike at any time; to be afraid and to know and acknowledge your fear, and still to live creatively and with unstinting love: that is to live with grace. - Peter Henry Abrahams

Marijuana and Chronic Pain and Chronic Illness: A Political Fight

2008-07-30T14:53:00.003-04:00

Today on Capitol Hill Senator Barney Frank (D-Mass) took a stand that boosted the treatment possibilities for those with chronic pain and chronic illness. He took a stand to limit or eliminate penalties for marijuana users with less than 100 grams in possession.

So what does this have to do with chronic health?

Well, in those few areas of the country that allow for medical marijuana use, the fear was always that though the state or municipality allowed such use, the federal government did not. Theoretically then, the federal government could have come in at any time and penalized someone using marijuana medically, regardless of the safeguards or other laws in place.

But today, the dialog started to change on marijuana. Perhaps it's the realization that so many Americans support medical marijuana availability. Perhaps it's the fact that we are realizing the war on drugs is a crock. Perhaps it's the fact that we know there are bigger fish to fry and using government dollars to go after small time marijuana users just isn't worthwhile. Perhaps people are starting to come to terms with the fact that marijuana is actually less dangerous than alcohol and nicotine.

Whatever the case, today at least there's a little more breathing room (pardon the pun) for those with a chronic illness/chronic pain who use marijuana as a treatment option.

Daily Inspiration: 7/30/08

2008-07-30T14:51:00.001-04:00

I hate to advocate drugs, alcohol, violence or insanity to anyone, but they've always worked for me.
-Hunter S. Thompson

Daily Inspiration: 7/29/08

2008-07-29T17:47:00.001-04:00

Sex. In America an obsession. In other parts of the world a fact. -Marlene Dietrich

In honor of the new X-Files Movie: "I Want To Believe"

What to do when chronic conditions haunt you?

2008-07-28T16:39:00.003-04:00

I've had a bit of a relapse.

I don't know what to peg this on. I could say that the impending purchase of a home and a closing date in less than three weeks gives me heartache. I could say that work has been busier than normal. I could blame it on the heat. But none of those seem entirely true. Yet at the same time, I don't know what caused this relapse.

In the past week I've had the following symptoms attributable to at least one if not more of my chronic conditions:

fatigue
pelvic pain
vulvar pain
irritable bowels
back pain
headaches
frequent urination

It's as if my body's defenses have taken a summer vacation and left me to rot.

Though I'd like to end this post with some sort of creative way to get through a flare up like this, I don't think I have one. In fact, I'm planning on vegging out on my couch tonight for the better part of the evening. Maybe I need more of that. Maybe I need less. In any event, I don't know what else to do when all else fails.

Progress is a funny thing, isn't it? You don't always know what it truly means until it's eroded.

Daily Inspiration: 7/28/08

2008-07-28T16:37:00.002-04:00

Friday Chronic Roundup

2008-07-25T13:07:00.002-04:00

PCOS/Insulin Resistance/Diabetes

The causes of insulin resistance and sensitivity in horses--might this be a clue for people?
A new partnership to develop pre-diabetes diagnostics and provide data on IR
Growth hormone therapy may decrease the risk of diabetes in some girls
Drugs Repaglinde and Metformin show results in people with Type II Diabetes

Interstitial Cystitis/Pelvic Floor Dysfunction/Vulvodynia/IBS

Does sauerkraut have anti-inflammatory properties for IBS?
Overactive bladders have an affect on the mind
Another story about the potential uses of Botox on the pelvic floor
Case study of overactive bladder syndrome
An overview of stress urinary incontinence

Allergies/Asthma/Celiac Disease

Can your DNA tell that you have celiac disease?

Fibromyalgia/Chronic Fatigue Syndrome

Another anecdotal tale of the difficulty surrounding diagnosis of fibromyalgia
Intestinal gluten receptor is gateway for celiac disease

Daily Inspiration: 7/24/08

2008-07-24T18:02:00.001-04:00

The Constitution only gives people the right to pursue happiness. You have to catch it yourself. -Benjamin Franklin

A Great New Resource: Cure Together

2008-07-23T17:36:00.003-04:00

I have gotten a good deal of feedback (all positive) about our guest bloggers on TBC. My only repeat-guest-blogger (at this time anyhow), Alexandra Carmichael, has been instrumental in the creation of the new site Cure Together. I was lucky enough to get a sneak peak at it last month and am excited that I'm now able to write about it to you.

Cure Together is self-described as "a place where patients and researchers work together, doing open source research to find cures."

I can say many things about this site, but I'm going to be brief to allow you to mosey on over there and check it out yourself. This site is sorely needed. Too often there is a disconnect between the researchers and the people affected by the research. On Cure Together, as a patient, you can track your health, connect with other people that have your condition, and not only participate in research, but help fund it as well. This is just a brilliant platform! Now when we have the opportunity to donate, we can donate directly to the research affecting our lives.

Currently Cure Together focuses on vulvodynia, endometriosis and migraines--all painful, time consuming, and emotionally difficult chronic conditions.

So stop reading this and click over there today. Sign up and get involved! The only way we can hope to achieve progress is to make that progress ourselves.

Daily Inspiration: 7/23/08

2008-07-23T17:34:00.001-04:00

There is nothing more difficult to plan, more doubtful of success, nor more dangerous to manage than the creation of a new order of things..... Whenever his enemies have occasion to attack the innovator they do so with the passion of partisans, while the others defend him sluggishly so that the innovator and his party alike are vulnerable. - Niccolo Machiavelli

Daily Inspiration: 7/22/08

2008-07-22T10:00:00.001-04:00

The home is not the one tame place in the world of adventure. It is the one wild place in the world of rules and set tasks. - G.K. Chesterton

Friday Chronic Roundup

2008-07-18T13:23:00.004-04:00

It's another Friday!!! Time for some news updates...

PCOS/Insulin Resistance/Diabetes

The absence of an "acute insulin response" predicts Type 2 Diabetes in white folks.
If you understand this: RBP4 is related to decreased insulin sensitivity, mostly through its association with nonoxidative glucose metabolism.
Insulin has inflamation-reducing properties. Interesting.
How does the brain contribute to insulin resistance?
Excessive weight loss can affect women's ability to conceive.
A gene essential to ovulation has been isolated by Canadian and European researchers.

Interstital Cystitis/Vulvodynia/Pelvic Floor Dysfunction/IBS

Defining the urologic chronic pain syndromes
Aloe very was my grandpa's all-time cure, maybe he was right for IBS.
Someone is studying the pelvic floor!!! (In Oregon)
Chronic gynecological conditions no longer silent on the internet.

Fibromyalgia/Chronic Fatigue Syndrome

The treatment of Fibromyalgia through alternative therapies.
Sisters who share fibromyalgia.
Surprise, surprise--Fibromyalgia patients have to fight for prescriptions to be covered.
Another surprise--Fibromyalgia is little understood, says CNN.

Allergies/Asthma/Celiac Disease

A gluten-free diet isn't right for everyone.
Fibromyalgia takes time to diagnose.

DON'T FORGET: Online Vulvodynia Support Group Tonight at 8

2008-07-17T16:51:00.002-04:00

Sponsored by Life With Vulvodynia. Check it out. I was really planning on making it, but it looks as if I might have double booked myself. But I encourage you to go there and I give a standing ovation to Quinn for setting this up.

If I'm not there tonight I'll be there next time!

Daily Inspiration: 7/17/08

2008-07-17T16:49:00.001-04:00

The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly.
- Buddha

Daily Inspiration: 7/16/08

2008-07-16T11:12:00.003-04:00

If we weren't all crazy, we would go insane.
-Jimmy Buffett

Daily Inspiration: 7/14/08

2008-07-14T10:59:00.001-04:00

A diplomat is a person who can tell you to go to hell in such a way that you actually look forward to the trip. - Caskie Stinnett

Voices from The Body Chronic: An Update from Alexandra

2008-07-14T10:55:00.002-04:00

Back in May we heard from Alexandra on her journey with vulvodynia. Alexandra is the author of earth-change.blogspot.com, a serial bio-IT entrepreneur, and Taoist Tai Chi instructor. She lives with her husband, two daughters, and vulvodynia, in the San Francisco Bay Area. Recently she helped launch CureTogether a site where patients and researchers can work together on issues of chronic health.
-----------------------------

I feel like I've been cured.

I guest blogged recently about my 10-year journey with vulvodynia. Only 2 months later, I am enjoying a 95% pain-free life, including, yes, SEX! For the first time ever, penetration actually feels good, something I thought I would never get to experience and something I could not even imagine before. I found my G-spot recently and have been feeling such intense pleasure overload that we have to take it easy some nights. :) The remaining 5% of my pain comes from a bit of scar tissue from the silver nitrate burning I mentioned in my last post - I may be able to have it surgically removed if it bothers me enough.

So how did this incredible change come about? It was really a combination of things, but mostly it's the story of a wonderfully gifted naturopath who helped me finally figure out what was wrong with my body, and a graduate student in Australia.

After realizing my estrogen levels were sub-menopausal, my naturopath started on an estrogen cream therapy, 1g of estradiol per day, compounded specifically for me and applied vaginally. The first time I put it on, I almost passed out from the pain, but I committed to doing it for a whole week before giving up. By the end of the week, the pain had subsided enough that I thought I could try for another week. And by the end of the month, the raw, blood-red vulvar tissue had become soft, pink, and receptive. I couldn't believe it. I also started feeling much more interested in sex, which was a nice surprise for my husband!

At the same time, however, I went through a grieving process that I had suffered so much for so long, and it could have all been solved for me by a simple cream, if I had only known about it before. Here's where the Australian graduate student comes in. While browsing the website of the National Vulvodynia Association, I came across a study called Revive, which provided the emotional healing and relationship rebuilding that my husband and I both needed. Revive is a web-based treatment program designed specifically to assist women with sexual dysfunction, and it involves written/communication and physical/sensory exercises for both partners. Lisa Jones is the visionary behind this program, and I am so grateful for her work developing it as well as for her support and encouragement throughout. I highly recommend it for anyone struggling with painful sex.

Then, with both physical and emotional healing happening, my husband and I decided to build a website to help others like me find answers faster and reduce their suffering, perhaps by many years! It's called CureTogether, and it brings patients and researchers together to find cures for chronic conditions. People can post and review resources that have worked for them, and eventually we will be able to make discoveries and connect people with similar health profiles so that they can learn from each other and feel better sooner.

I'm a living example that it is possible to heal and live almost pain-free! Thanks so much to Body Chronic for providing a forum for us to share our stories - it's so important for us to learn from each other, and if we all work together, we can help ease pain and suffering for the millions of us out there with vulvodynia.

Wishing you strength and perseverance on your own road to healing.
Alexandra

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If you are interested in telling your story or developing an interconnection between chronic pain and chronic illness and outside forces or influences, please e-mail me at thebodychronic@gmail.com.

Friday Chronic Roundup

2008-07-11T08:00:00.003-04:00

PCOS/Insulin Resistance/Diabetes

One study shows that a combination of sitaglipin and metformin show substantial beta-cell function improvement at 2 years
Trans-fatty Acids do not increase the risk of diabetes
Higher levels of the blood protein "fetuin-A" linked to diabetes
Another article about the benefits of cinnamon
The new path--more drugs earlier on for Type 2 Diabetics

Interstitial Cystitis/Vulvodynia/Pelvic Floor Dysfunction/IBS

A primer on Percutaneous Tibial Nerve Stimulation (PTNS) for IC
Incontinence is not the disease, it is a symptom
Beneficial bacteria for IBS
Urinary incontinence leads to decreased mental health and stress

Celiac Disease/Allergies/Asthma

Celiac disease is an "illusive iceberg"
How one person lived and thrived on a gluten free diet

Fibromyalgia/Chronic Fatigue Syndrome

The importance of support for fibromyalgia sufferers
The importance of education for fibromyalgia sufferers
An ancient retro-virus might be the cause for CFS, MS and autoimmunity
FDA asks for warning on epilepsy drugs, which Lyrica is one of many
Is a new CFS drug on the horizon?

Other

A new documentary looks at Lyme Disease

Daily Inspiration: 7/11/08

2008-07-11T07:55:00.000-04:00

People often remark that I'm pretty lucky. Luck is only important in so far as getting the chance to sell yourself at the right moment. After that, you've got to have talent and know how to use it. -Frank Sinatra

Daily Inspiration: 7/10/08

2008-07-10T15:33:00.002-04:00

There is no salvation in becoming adapted to a world which is crazy. - Henry Miller

Voices From The Body Chronic: Chronic Pain in the Office: How to Work Through It

2008-07-08T09:00:00.002-04:00

Quinn is the author of Life With Vulvodynia. She has inspired me with her quest to make her workplace more accommodating of her chronic pain and I asked her to share her story here. Her site is hosting a live online support group on Thursday, July 17 at 8 p.m. EST. Be sure to check it out.

--------------

Two years ago, I started my first adult job. I had to dress up, I had to show up on time, and I had to work at a desk all day. I had no idea how much this exciting lifestyle change would exacerbate my condition.

I have vulvodynia, pudendal neuralgia and the occasional bout of vulvar vestibulitis. I don’t really have a “body chronic,” it’s really more of a “vagina chronic.”

Sitting has become my enemy. I absolutely cannot sit in a normal chair for more than two hours without beginning to flare. My biggest problem is pudendal neuralgia, which is commonly described as pain with sitting. Unfortunately the pain doesn’t stop once you get off your butt. On the contrary, that pain can stay with me for weeks.

It became impossible for me to function at my desk job. I needed to make some changes fast, but I didn’t want to draw any negative attention to myself. I tried a number of cushions and doughnuts, but they made no difference. I had to do something drastic.

My mother suggested I try a kneeling chair. She thought it would help alleviate the pressure on my inflamed nerve and allow me to continue to work at my desk. Before I made the purchase, I wanted to know if that kind of chair would make a difference in my pain. I called my pelvic pain specialist, but he had never had a patient use one.

I then turned to the internet and consulted pudendal.info. This is a wonderful resource for women with pudendal neuralgia and I recommend that women who have been diagnosed with vulvodynia to take a look and learn the facts about this condition. It could be the ultimate source of your pain.

There was an entire section on seating and I learned that a number of people endorsed the kneeling chair. I decided to give it a shot, but I didn’t know how I was going to pay for it.

Very timidly, I approached my boss and asked him if he would finance the purchase of a kneeling chair for me. I explained that I had a chronic pain condition that was aggravated by sitting and that I needed an alternative.

He told me to contact the Disabilities Service Office (DSO) and see if there was funding available for the purchase of special needs equipment.

I work for a very large university that is expected to be an equal opportunity employer. I was intimidated by the thought of navigating the vast bureaucracy, so at least for the time being, I decided it would be best for me to buy the chair, and find out if I could be reimbursed later.

The chair helped, but there was still a limit to how long I could use it. But it was certainly better than nothing. That is, until it broke.

One day, I was leaning to pick up something on the floor and I heard a crack. The kneeling pad broke in half. On top of being a blow to my ego, the broken chair presented a very serious problem. I didn’t have a way to work at my desk.

I started kneeling on a regular desk chair and standing bent over my desk. It was miserable. I had to find a better way to function in the office.

I contacted the Disabilities Service Office and asked for advice. I was told to have an ergonomic evaluation to determine my office needs. The gentleman who preformed the evaluation was very sympathetic and recommended a height adjustable workstation. That sounded perfect. I could then alternate between sitting and standing to take pressure off my troublesome nerve.

When I followed up with the Disabilities Service Office, I learned that it was my boss’s responsibility to finance the purchase of special needs equipment. I was told that he should have paid for the chair and he must pay for the new workstation.

Apparently, the Disabilities Service Office acts as an enforcer. If an employer is reluctant to comply, they function as an employee liaison to inform the employer of his obligations.

I have a big strike against me having a noticeable chronic health condition. When I have a serious flare, I may have to miss time at work in order to see my specialist. I always bring a note, but I have been told on more than one occasion that my absences are understandably problematic. If I’m not at work, I can’t do my job. Naturally this is a frustrating for an employer.

I didn’t want to make any waves or ruffle any feathers.

Nervously, I asked my boss if he would support the purchase of a height adjustable workstation. I showed him a printout with a picture and the price. He asked again if the Disabilities Service Office would pay for it and, very softly, I told him no. I had no desire to tell him that he was expected to pay, and fortunately, I didn’t have to.

After considering the price he said, “if it was going to cost $3,000, I would say no, but because it’s just $300, that’s ok.”

I felt incredibly relieved. After paying almost $300 for the kneeling chair, I didn’t want to have to purchase the workstation as well. My contact at the Disabilities Service Office strongly encouraged me to pursue a refund on the chair, but I think I need to choose my battles.

I feel like I’ve won and I don’t want to fight any more.

As women with chronic pain it is important to know that we do have rights, but it is also important to realize that exercising those rights can cause an antagonistic relationship with your employer. Despite the laws in place to support our needs, it’s very easy to work around those laws to find ways to fire a difficult employee.

I’m extremely fortunate to work where I do, and to have a boss with some amount of compassion. Please don’t interpret my story as a call to arms. I’m not encouraging all women to go out and demand better work equipment. I do, however, want you to know that you have options, and it is possible to make your work environment physically tolerable.

Daily Inspiration: 7/8/08

2008-07-08T08:00:00.000-04:00

In all affairs it's a healthy thing now and then to hang a question mark on the things you have long taken for granted. -Bertrand Russell

This Actually Sounds Like a Good Thing To Me (Mostly)

2008-07-07T15:04:00.000-04:00

A gyno in NYC (of course) came up with the idea for a new kind of spa--one for the vagina. At first blush, this may seem fad-like and part of a trend to make women conform to one standard of beauty. As those of us with pelvic floor issues know, however, this type of thing could actually start a new paradigm about how pelvic issues are treated. Believe me, that type of shift is needed.

The visit starts off with a checkup:

At the spa, the signature treatment will be a $150 gynecological exam — in which a client contracts her pelvic muscles around Dr. Romanzi’s fingers — to determine by feel whether muscle tone is weak, moderate or strong.

And the treatment goes on:

Dr. Romanzi likes to call the vaginal workouts she prescribes “personal training.” Clients could also use an in-office electrostimulation machine to improve pelvic muscle tone or buy a device for home use. Dr. Romanzi said that such treatments are intended to improve bladder control; she said pelvic training may also lead to more intense orgasms.

This sounds a lot like my physical therapy to me.

I disagree with this statement wholeheartedly:

The advent of the pelvic spa, however, takes body fixation to a new level, furthering the idea that there is no female body part that cannot be tightened, plumped, trimmed or pruned.

And instead I agree with the doctor:

Dr. Romanzi said her goal was to teach women how to properly perform Kegel exercises, intended to strengthen the sling-shaped muscle that supports the bladder, vagina and rectum. Gynecologists sometimes suggest such pelvic physiotherapy for minor vaginal laxity after childbirth or for mild urinary incontinence.
But Dr. Romanzi believes all women might benefit from such exercises.

How true!

I believe the main focus of the project is diminished with this part, however:

The spa will also offer cosmetic laser treatments intended to tighten the skin of the vulva in post-menopausal women.
“The outer layer can become almost scrotal, very wrinkly and lax,” Dr. Romanzi said.
She treats pelvic skin using a combined laser and radio frequency device that is designed for facial skin and has not been studied for safety and efficacy when used on the vulva, she said. But she said the laser does not penetrate deeply enough to affect internal organs like ovaries.

See, that's where the line should be drawn--all women should have a pelvic health plan, but changes for cosmetic purposes only should be discouraged.

So I guess it's not a good thing in its entirety. As many things go, there are good parts and bad parts, and we have to wait and see whether the good outweighs the bad. But I'll welcome the advent of new thinking and hope that it leads to a more open and welcoming environment for women going through pelvic floor issues.

Daily Inspiration: 7/7/08

2008-07-07T15:02:00.002-04:00

New ideas come into this world somewhat like falling meteors, with a flash and an explosion, and perhaps somebody’s castle-roof perforated. Sarah Bernhardt

Voices From The Body Chronic: I'm A Guest Blogger at Fighting Fatigue

2008-07-06T18:38:00.002-04:00

I meant to put this up on Friday, but the holiday really messed with my internal calendar. In any event, it is with great pride to let you know that I am a featured guest blogger on Fighting Fatigue. You may (and well should) have read Fighting Fatigue's owner, Sandy's post on Friday here on TBC. I was featured on her blog on Friday right here.

Also, as a head's up, look for a great piece from Quinn at Life With Vulvodynia on Tuesday about work accommodations and chronic pain.

Enjoy!

Voices From The Body Chronic: Diagnosing A Chronic Illness

2008-07-04T09:00:00.001-04:00

Today's guest blog is from Sandy, author of the site Fighting Fatigue. More is about her at the bottom of this post.
---------------------------------

When I first became severely ill with ME/CFS, I was only 21 - that was 18 years ago. Back then there was very little information available on ME/CFS and I was fortunate to be diagnosed by the second doctor I saw for my symptoms. The problem was he lost his medical license due to insurance fraud and I had to find a new doctor to treat my illness. That is when I started on the long and frustrating search for a doctor who believed I was truly ill.

While I suffered for many years, shed a lot of tears, and received a lot of really dumb answers from supposedly "intelligent" doctors, I always knew that I was truly ill. I think that is the important thing for undiagnosed patients to remember. Never forget what you truly believe and always follow your gut. I would have times where I would think that maybe it was just depression or maybe it was just from being overworked, but I continued to fight back and say that wasn't it. My instinct and what my body was telling me always won out over what the doctors were telling me.

It seemed like once I was diagnosed with one chronic illness, the ball started rolling and more health issues followed. Over the last 18 years I have been diagnosed with Fibromyalgia, Interstitial Cystitis, and Benign Essential Tremor. I have also had two foot surgeries for tarsal tunnel and both hands operated on for carpal tunnel. It has been a long uphill battle but I never give up. I refuse to let a doctor or anyone tell me what I have experienced everyday for half of my life is not real. I do have times where I get depressed but I always know that I was chosen for a special purpose. God wouldn't lay all of this on one person if he didn't feel I couldn't use it in some way. That is why a little over two years ago I started my Fighting Fatigue website to offer support, my personal journey, and the latest information available on ME/CFS, Fibromyalgia and Interstitial Cystitis.

Besides believing in what your body is telling you, it is also wise for chronically ill patients to learn as much about their illness as possible. It's okay if you know more than your doctor does about what's going on with you. Be willing to fight and don't just accept your illness. You have to learn to live with it but it doesn't mean that your illness has to define who you are. Always know that no matter how bad it seems, there is a light at the end of the tunnel if you just look for it. Have faith, pray a lot and reach out to others for support who understand what you are going through.

-----------------------

Sandy Robinson is a stay-at-home disabled mom who has spent the past two years faithfully writing about Chronic Fatigue Syndrome, Fibromyalgia, and Interstitial Cystitis - illnesses she has suffered from for almost 20 years. Sandy is the author of the popular website, Fighting Fatigue, and is also the author of two other health blogs: Chronic Health Blog & IC Disease. One of Sandy's goals through her Fighting Fatigue website is to let people know that being physically disabled doesn't mean that life has to end. She continues to strive and learn everyday new ways to deal with her illness, enjoy life, and share what she has learned with others.

Friday Chronic Roundup

2008-07-04T08:00:00.004-04:00

PCOS/Insulin Resistance/Diabetes
Good sugar and bad sugar--what's the difference?

Interstitial Cystitis/Pelvic Floor Dysfunction/Vulvodynia
Is Sjogren's Syndrome linked to IC?

Irritable Bowel Syndrome/Celiac Disease
An IBS drug trial continues and is in the third phase.
The backlash against colon cleansing continues.
Celiac disease is more common than realized.
Home-based cognitive behavioral therapy relieves IBS symptoms.

Allergies/Asthma

Fibromyalgia/CFS
Treating fibromyalgia.
Treating CFS.
Did the fibromyalgia drug treatment approvals legitimize the condition?
Acupuncture and chiropractic for fibro?
Exercise and fibro.
Fibro disability issues.

Other
Does a happy doctor equal a healed patient?

Daily Inspiration: 7/3/08

2008-07-03T14:08:00.002-04:00

So I take pleasure in the details. You know... a quarter-pounder with cheese, those are good, the sky about ten minutes before it starts to rain, the moment where your laughter become a cackle... and I, I sit back and I smoke my Camel Straights and I ride my own melt. -Ethan Hawke as Troy Dyer, Reality Bites

Daily Inspiration: 7/2/08

2008-07-02T15:48:00.001-04:00

From Graph Jam

more graph humor and song chart memes

Alone No More: An Online Vulvodynia Support Group

2008-07-01T22:51:00.002-04:00

The lovely owner of Life with Vulvodynia has started an online support group for those of us with vulvodynia. The first "meeting" (chat room) is Thursday, July 17 at 8 p.m. EST. Check it out here.

Be there or be square.

Inflammation Theory: Now More Credible Than Ever

2008-07-01T14:21:00.003-04:00

A new study shows that my Inflammation Theory is more credible than ever now.

DeLano and his collaborator, Geert Schmid-Schonbein, a professor of bioengineering at UCSD, have been working with a widely used laboratory model of disease, a rat bred to have high blood pressure.
They have found that proteases, whose function is to clear away molecular debris, can go awry and split apart a number of different cell wall receptors. If insulin receptors are damaged, normal metabolism of glucose is not possible, and diabetes can be the result. Proteases can also damage receptors that are vital for the functioning of infection-fighting leukocytes.

And there's more...

The researchers also found that protein receptors on the surface of cells are clipped off as the rats develop high blood pressure. "Many receptors in blood vessels cause them to relax," DeLano said. "Many proteases we see in the animals cleave receptors responsible for relaxation." Giving the rats doxycycline, an antibiotic that is also a protease inhibitor, brought down their blood pressure and restored normal immune system function.

What does this all mean?

"This is really an important observation," said H. Glenn Bohlen, a professor of cellular and integrative physiology at Indiana University Medical School, who wrote an accompanying editorial. "It ties in information that high blood pressure and insulin resistance have the same cause, damage to receptors."

And the real kicker:

The newly reported studies might also help explain why antioxidants such as vitamins C and E help against inflammation, he said.
"The next approach probably would be to treat an inflammatory state," Bohlen said. "There is something going on that we can interact with. There are many commercially available methods for blocking proteases."

In addition to antibiotics such as doxycycline, drugs such as ACE inhibitors are protease inhibitors, DeLano said. Protease inhibitors are also used to control HIV, the virus that causes AIDS.
(Emphasis mine.)

Let's home this memo makes it to our doctors.

Why We Should Be Concerned

2008-07-01T13:58:00.002-04:00

The state of health care in this nation is abysmal at best. Our older citizens can't get basic health care and have to choose between eating and taking medecine. Those with chronic illness go ignored and untreated. And now this...this shocking evidence of the mistreatment of the mentally ill.

As many of you know, I'm a big mental health advocate. I believe in the mind-body connection, but more importantly I know firsthand what a mind gone awry can do to your life. So it is even more staggering for me to see this: a woman ignored and left to die in a hospital waiting room.

Of course I don't know the background or the setting really, but the story is upsetting. More likely than not, this was the only option this woman had--and she paid for it with her life.

Say what you may about socialized medecine, but people with socialized medecine don't die in waiting rooms.

Daily Inspiration: 7/1/08

2008-07-01T13:56:00.001-04:00

The optimism of a healthy mind is indefatigable.
Margery Allingham

Daily Inspiration: 6/30/08

2008-06-30T22:12:00.002-04:00

Woman is the salvation or the destruction of the family. She carries its destiny in the folds of her mantle. Henri Frederic Amiel

Daily Inspiration: 6/26/08

2008-06-26T14:24:00.001-04:00

I argue very well. Ask any of my remaining friends. I can win an argument on any topic, against any opponent. People know this, and steer clear of me at parties. Often, as a sign of their great respect, they don't even invite me. -Dave Barry

Daily Inspiration: 6/25/08

2008-06-25T17:34:00.001-04:00

Most people are too busy living life to ever put life in their living. - Doug Firebaugh

The Chronic Cat Teaches Another Lesson: Be Vigilant

2008-06-23T15:03:00.002-04:00

I don't know if these things happen for a reason or I just notice them for a reason. Either way, it's time to get back on the horse when it comes to taking good care of The Body Chronic....and The Chronic Cat.

For the first time in a long time (long being a month or so), I got pelvic pains with no trigger whatsoever on Friday. I was sitting here at work minding my own business when out of nowhere I realized it felt as if someone was stabbing me in the pelvic region. These pains used to be more prevalent before physical therapy, but having a refresher course in them is not something I had hoped to do. I gritted my teeth for a minute to get through the first wave of pain, and then promptly took my medecine--something I've been forgetting to do as of late. Then on Saturday the pain struck again, just as the mood was about to strike. (Remind me to tell you in depth how being a newlywed and having pelvic issues is rather depressing.)

I didn't think much of this. I'll admit it--complacency usually gets the best of me, whether I notice it or not. So a few pains here and there (and when I say pain, I mean the noticeable pain that stops you from doing something, not the everyday pain people with chronic illness/chronic pain face) isn't usually enough to really strike me as interesting.

Then an accident happened. As I was sitting on the couch on Sunday, Lucy, The Chronic Cat, decided it was time to sit with me, as she usually does when I'm on the phone or the computer. So she jumped up and immediately I knew something was off...then I felt it...and smelt it. Lucy had wet herself. I'd like to say this is the first time this has happened--but this is the third time (and the second time since she's last seen the vet). I used to think she'd just get startled easily, but now I wonder if it isn't something more. So after cleaning her, the couch and myself I got to Googling. Sure enough, spayed female cats are known to have this problem. I'd venture to guess that it's even more prevalent in cats with known urinary tract issues already. I e-mailed the vet and tried to not get too hyped up about it. But I believe that Lucy has one of my problems--pelvic floor dysfunction (something about the cat's anatomy when they get spayed leads to it).

I realized throughout all of this, though, that I've been lax on giving Lucy her meds too. In the rush of life and the unconcious desire to escape The Body Chronic, I've not only let my own health slide, but Lucy's as well. Granted, I don't think Lucy's problem this weekend was directly related to her other issues, but it was a wake-up call.

Sometimes, for those of us in The Body Chronic, it's a helluva lot easier to ignore the signs and even our better judgment and just pretend as if everything were normal. I skip pills more often than I'd like to admit and way more often than I should, but then I complain when I have an issue. I can't have it all--either I treat myself properly or I fall back into the pain that got me here in the first place. The same goes for The Chronic Cat.

I'm happy to say that Lucy has had her medecine for two days in a row now and I have set out my pills for the week in my elderly-inspired-pill-box. It may be a pain, but it's better than being in pain. And I will not let the issue drop again. We're going to find a fix for both of us...even if it's just a patch..and we're going to be consistent.

Or at least we'll strive for consistency and settle for something more than complacency.

Daily Inspiration: 6/23/08

2008-06-23T15:01:00.001-04:00

Scientists announced today that they have discovered a cure for apathy. However, they claim no one has shown the slightest interest in it.
- George Carlin

Friday Chronic Roundup

2008-06-20T09:00:00.000-04:00

PCOS/Insulin Resistance/Diabetes

Researchers at the Joslin Diabetes Center in Boston have found a defect in beta cells that make and release insulin that has implications in the development of diabetes.
Once a week Byetta is on its way--in one form or another.
Is an anti-inflammatory, anti-oxidant agent going to be the next step in treating diabetes?
Men and women process fructose differently.
Does Actos keep diabetes at bay?
Metformin slows early-onset puberty in girls.

Interstitial Cystitis/Pelvic Floor Dysfunction/Vulvodynia

Defining and treating IC--are we dealing with "a heterogeneous and poorly defined spectrum of disorders? (I think so!)
IC drives managed costs up--2.4 times.
Pelvic Floor Prolapse associated with levator trauma

Irritable Bowel Syndrome/Celiac Disease

Irritable bowel syndrome linked to an overactive chili pepper pain receptor?

Chronic Fatigue Syndrome/Fibromyalgia

Different thalamic (brain) structures have a relationship to sleep problems in CFS patients
Diagnostic and treatment challenges of CFS
Cymbalta has been approved for Fibromyalgia.

Other

A primer on food allergies versus food intolerance
Could tumeric be more than a spice? (I'm skeptical since curry sends my body aflame)
Is it true? Do gay men and straight women have similar brains? And do lesbians and straight men have similar brains?

The AMA Does It Again

2008-06-18T16:09:00.002-04:00

In a terrifying move for anyone who is planning to have children biologically or is on their way to do so now, the AMA has passed a resolution that calls for governments to BAN home birth. This is notwithstanding the fact that it is safe, secure and has been done for millenniums. The lengths these people will go to in order to ensure a monopoly over all things health-related is mind-boggling.

You can read the full text of the resolution here. It even references Rikki Lake's amazing documentary, The Business of Being Born which I adored.

But the scary part can be seen in the last sentences of the document:

RESOLVED, That our AMA develop model legislation in support of the concept that the safest setting for labor, delivery, and the immediate post-partum period is in the hospital, or a birthing center within a hospital complex, that meets standards jointly outlined by the AAP and ACOG, or in a freestanding birthing center that meets the standards of the Accreditation Association for Ambulatory Health Care, The Joint Commission, or the American Association of Birth Centers.” (Directive to Take Action)

Ughhhhhhh. No, dear sirs (and I use that term purposefully), the safest setting for birth is not in a hospital or a birthing center within a hospital complex. In fact, women have been safely having babies at home forever. The AMA just had to stick their regulation where it doesn't belong.

So if you want to battle back, check out one of these resources:
The Coalition for Improving Maternity Services
American Association of Birth Centers
Citizens for Midwifery
The Big Push for Midwives

Thanks to Miriam at Feministing for bringing this to my attention.

And American Medical Association--you are on the list.

Nausea, Heartburn, Indigestion, Upset Stomach, Diarrhea

2008-06-18T16:05:00.003-04:00

The American Gastroenterological Association has a somewhat neat function. It's a quiz (like a Cosmo quiz but not sexist) about your digestive health. Though I disagree with BMI being as big of a factor as they make it out to be, the quiz is a helpful tool for those assessing whether it's time to see a doctor.

For the record, 50+ points was a serious problem and I had 170. Yeah...

Daily Inspiration: 6/18/08

2008-06-18T15:55:00.001-04:00

Odors have an altogether peculiar force, in affecting us through association; a force differing essentially from that of objects addressing the touch, the taste, the sight or the hearing. -Edgar Allen Poe

Really?!? No food allergies, huh?

2008-06-17T17:34:00.003-04:00

Round two of The Forced Allergy Experiment took place this morning with about 48 more pricks in the back. I tested positive for the mold with the interdermal tests (more sensitive). But I did not test positive for any food items.

Now I'm at a fork in the road. I was kind of hoping we'd find a food allergen that was causing stomach problems and we could rule out IBS. I was just not looking forward to another chronic and misunderstood illness. With food allergies you can explain them away pretty easily. It's harder telling someone that your bowels don't like to color inside the lines.

But I guess the food allergy...or should I say food intolerance...experiment is not really over. There is a difference between food allergies and food intolerances. The symptoms are different and seeing as I've rarely had a wheezing fit over food (other than curry, which I don't think they tested), it shouldn't be a shock that I don't have a food allergy. In fact, very few people have true food allergies.

Food allergies cause:

Rash or hives
Nausea
Stomach pain
Diarrhea
Itchy skin
Shortness of breath
Chest pain
Swelling of the airways to the lungs
Anaphylaxis

Food intolerance causes:

Nausea
Stomach pain
Gas, cramps or bloating
Vomiting
Heartburn
Diarrhea
Headaches
Irritability or nervousness

And maybe since the IBS symptoms are so akin to food intolerance symptoms, I may never know. What an discomforting thought.

In any event, the experiment is over. I was put on a new daily inhaler for my asthma and Singulair in addition to Allegra for good. We'll see how this works out. But in the meantime, my stomach rages on.

Daily Inspiration: 6/17/08

2008-06-17T14:00:00.002-04:00

In honor of my attendance at Obama's Detroit campaign stop last night where Al Gore announced his endorsement...

Many people have waited for some sign that our country is awakening once again.

How will we know when a massive wave of reform and recovery and regeneration is about to take hold and renew our nation?

What would it look like if such a change were beginning to build?

I think we might recognize it as a sign of such change if we saw millions of young people getting involved for the first time in the political process.

I think we might just recognize that if we saw that new generation casting aside obsolete and hurtful distinctions and reaching out to one another across the ancient divisions that have frustrated action in the past.
I think we would know this change was coming if a new generation rejected this special interest politics of the past and the big money that fueled it and instead used the Internet to get small donations and unite Americans in a common effort to realize our common destiny.

If we saw it coming, we would recognize it by the words hope and change. Perhaps we would recognize it if we heard a young leader rise up to say we're not a red state America or a blue state America, we are the United States of America. We would know that change was on the way if that young leader reached out not only to the supporters of the other candidates in his party, but also beyond partisan lines, to Republicans and Independents, and said to us all, America, our time has come.

I think we would recognize it in a candidate who, in response to those doubting our ability to solve the climate crisis and create a bright future, inspired millions to say yes, we can.

- Al Gore

I'm Not Dead

2008-06-16T14:14:00.002-04:00

And I didn't forget about Friday's Chronic Roundup. Work got the best of me and I haven't had time all weekend to make it. There's a lot of stuff to sift through sometimes. I'll put the real interesting ones up as their own stories this week and the rest will fall into this coming Friday's Chronic Roundup.

Tomorrow is Allergy Testing Part II, so I'm still sans-anti-histimines. It's getting better with the Singulair though. More info on the testing after tomorrow.

Daily Inspiration: 6/16/08

2008-06-16T14:12:00.002-04:00

Talent is cheaper than table salt. What separates the talented individual from the successful one is a lot of hard work. -Stephen King