A Great New Resource: Cure Together

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.

Voices from The Body Chronic: An Update from Alexandra

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.
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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.

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.

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.

Voices From The Body Chronic: Ray of Light After 10 Years of Pain

Ladies and gents, we have our first guest blogger! And what a good story she tells.

Today we'll hear from Alexandra Carmichael. 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.
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Ray of Light after 10 Years of Pain

I can say it - I have vulvodynia. For me that means I experience sex as an intense burning, like scraping a knife over a raw patch of skin or squeezing a watermelon into your nostril. Not fun, to say the least. And it's not just pain with sex. Tampons, jeans, riding a bicycle, and excruciating pap smears leave both me and my doctor in tears.

I was finally diagnosed last month after 10 years of pain, misdiagnosis, and emotional anguish. I saw six different doctors during this time who were baffled as to why I was in pain and how to help me. Finally my naturopathic doctor discovered that my estrogen level is lower than that of a post-menopausal woman, and I'm 31. I'm starting on an estrogen cream therapy to see if it helps. I'm hopeful, because the only time in my life that I didn't have extreme pain with sex was during both of my pregnancies, which suggests my vulvodynia may be hormonally linked. As I understand it there is more than one kind of vulvodynia, but it is still poorly understood by scientists.

I learned from the recent Vulvodynia Awareness Campaign launched by the NIH that up to 10% of women will experience some level of vulvodynia at some point in their lives. That's an incredible statistic for something most people have never heard of. We suffer in silence, and the personal stories we could share to learn and support each other are few and far between. It's just not the kind of thing you bring up at the weekly office lunch party. I decided to tell my story and put it out here, for what it's worth, hoping to help someone who may be lonely and afraid or inspire someone else to share their experience too.

Thinking back to when I first felt the grating, stinging pain, at the time I really didn't know what to think. I couldn't get past the feeling of being broken, the thought that this is not what sex is supposed to feel like. I didn't know where to turn. I remember asking my mom and my doctor if sex was supposed to hurt, and when they reassured me that it didn't, I felt myself crumbling inside. I got up the courage to go to a gynecologist, who very painfully probed me and told me to just relax and use lubrication. Another one put me through a battery of tests and told me all my levels were "within normal limits". A third doctor told me she was going to try to "open up a tight area" by burning my vaginal tissue with silver nitrate. Thinking it would help me, I let her do it on two occasions. It was all I could do to stop images of rape from filling my imagination. Needless to say, my symptoms did not improve. I read everything I could about vulvar pain, and tried simple home remedies like using very gentle detergents, modifying my diet, and wearing loose cotton clothing. No difference. I tried homeopathic remedies, reiki, and acupuncture. Still the same pain. I began to give up hope, and resigned myself to believing that this was just something I would have to live with for the rest of my life.

During this time, my motherly instinct grew so strong that it temporarily overcame the pain by sheer determination, and to my great relief it worked and we got pregnant quickly. We now have two beautiful daughters and are so grateful for them every day.

I remember learning that vulvodynia can sometimes improve after childbirth, but I actually had the opposite experience. In the past two years since my second daughter was born, the pain has increased. It also changed so that I now not only feel pain during contact, but also with normal activities like walking or taking a bath. The pain will flare up without warning and for an unpredictable amount of time. While not severe enough to impede my daily life, this new kind of pain did led me to seek naturopathic care, and I was so fortunate to find a wonderful, compassionate doctor who is working with me to reduce my pain. I also practice tai chi to help balance my body, mind and spirit.

I still have a glimmer of hope that I can live pain-free, but I must admit that the thought of pleasurable sex is just too far for me to even think about. Even if the physical pain went away, which I'm not convinced it will until we understand more about vulvodynia, I have so much psychological and emotional trauma to work through.

I am so grateful for my amazing husband who is supporting me through this. Vulvodynia really does affect both partners. We have been through the trenches together in so many ways, which has brought us as close as two people can be. We love working together, as scientists and entrepreneurs, and want to do whatever we can to help solve this puzzle and reduce suffering for me and millions of others in pain. Sharing my story is the first step.

Thanks for reading.
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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.

Voices from The Body Chronic--New Feature

I have decided to branch out.

I know that I'm not the only chronic body out there. In fact, I know The Body Chronic touches on many issues, not the least of which is fat acceptance. There are many that inspire me on a daily basis, including, but not limited to:

Fighting Fatigue

Life With Vulvodynia

Big Fat Deal

But You Don't Look Sick

Keep Working Girlfriend

Phat Science

ChronicBabe

Dr. Peggy Elam

Pelvic Pain Matters

Angry Fat Girlz

Junkfood Science

The Road Less Traveled

Chronic Holiday

Body of Work

The list could probably go on forever. The point is that it's time to branch out and start cross-talking and really strengthening the network of support. There are probably more issues that touch on or relate to chronic illness and chronic pain than I've even begun to think of, so feel free to give me ideas.

If you are interested in guest blogging, leave a comment or e-mail me at thebodychronic@gmail.com.

(And to those listed above--I'm about to tag you in your comments to see if you're interested.)
Let's build this thing together!