Daily Inspiration: 7/11/08

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

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

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.

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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

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)

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

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

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

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

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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

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

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

From Graph Jam

more graph humor and song chart memes

Alone No More: An Online Vulvodynia Support Group

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

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

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

The optimism of a healthy mind is indefatigable.
Margery Allingham