women 4 hope

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Women Blogging About Living With Chronic Illness

Posted by Catherine Morgan on June 3, 2007

This is a post that I did for BlogHer last month on women and chronic illness, I think it is relevant here so I am posting it. If you are a women blogging about how you are living with chronic illness, I hope you will add your link to the many comments that are all already on this post at BlogHer.

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BlogHers – Living, Coping, and Blogging with Chronic Illness

By Catherine Morgan

Millions of women suffer from chronic illness, and many of them courageously blog on how they are living and coping with their disease. Whether you suffer with chronic illness or you know someone who does, these BlogHers have much they can share with you.

Being sick is like being on a roller coaster — you can be up and hopeful one minute and down and doubtful the next. Your illness can take unexpected and unpredictable turns. One disease can dispose you to or give rise to another. This can be frightening as well as exasperating. Finding medication that works, being committed to following a good treatment plan and maintaining honest, direct and open communication with your healthcare providers takes time, energy and skill. But this is only part of the picture. Living with illness affects every part of your life and every significant relationship you have. — living with chronic illness

So let me introduce you to some of our courageous BlogHers…

Vicki has Multiple Sclerosis

I became a single mother when my two boys were 1 and 3. Now they’re in their 30’s. For years I was in Marketing with the travel and hospitality industry. I have a bachelor of journalism from UT and a master’s in marketing management from UTD. I’ve been disabled with MS for about 15 years. I love blogging. — Down The MS Path

Alix was diagnosed with Lupus

A lifetime of athletics failed to keep me healthy. At 30, I became disabled. I was diagnosed with lupus after meeting 7 of 11 diagnostic criteria. — more

A Thirty-something who is Living with Migrains

My migraines tend to be hormonal and related to my cycles, although changes in pressure (weather) and stress are also big triggers for me. I’ve found that staying very well-hydrated and getting regular (and enough) sleep help a great deal, as does eating regularly. I suspect that too much sugar and too much caffeine are also triggers for me.
This is my migraine blog. I hope you’ll find it interesting and helpful. In addition to my own thoughts, I’ll post links to articles I find that are relevant to the study and management of migraines. — read more

Kerri writes about how Diabetes may not define her, but it helps to explain her…

I have been living with type 1 diabetes since September 11, 1986 – over 20 years. I write this blog because I felt alone with diabetes, and blogging helped to make the burden a bit lighter. That means more than comments or stat counts or emails. Just knowing people are out there, living a life with diabetes that is so like my own, makes a world of difference. — six until me

Catherine has Celiac Disease and she is blogging on Tips and Tricks on Living Gluten Free

While most foods marketed as “whole grain” include a gluten-containing grain, there are a few whole grains that are delicious and safe for the Celiac diet. Quinoa (pronounced “keen-wa”) is one of my post-celiac discoveries. It is an ancient South American grain that also happens to be a great source of plant protein. It is available at Whole Foods, Trader Joe’s, and other well-stocked supermarkets. — see recipes

Joan and Rosalind both suffer with chronic illness, and they write a blog that helps and encourages women to continue working – Keep Working Girlfriend

For the past 30 years, I’ve lived with chronic illness: the daily questions, the self doubt, the pain, the fatigue, and the fear. I know, from experience, how tough it can be to get out of bed each day and get a job done, whether you work for yourself or someone else, whether you make just enough to get by or your salary is fat, whether it takes a one hour commute or you never have to leave home. And I know, from experience, that it can be hard to keep working, especially if you’re a woman, if you live with a chronic illness. The work world, a tough place for women who are “healthy” can feel impossible when you’re managing an illness, too.

May is Chronic Fatigue Syndrome Awareness Month, and on my blog Living With Chronic Fatigue Syndrome I posted on a statement that I gave to the Chronic Fatigue Syndrome Advisory Committee that met on May 16th and 17th.

Take a few moments and view a video that aims to help the friends and family of Chronic Fatigue Syndrome (CFS) sufferers understand the illness and what their loved ones are going through. From sleepydust.net

Also see: It’s Not Easy…To Be…Me

Since May is the month for bringing more awareness to Chronic Fatigue Syndrome, here are some other BlogHers blogging on this invisible disease.

Sandy has a blog called Fighting Fatigue. She suffers with Chronic Fatigues Syndrome, Fibromyalgia, and Interstitial Cystitis

My personal journey with chronic illness has been a difficult one, but a journey that has taught me a great deal about life, understanding and compassion.

I am here to let you know that if you suffer from Chronic Fatigue Syndrome, Fibromyalgia and/or Interstitial Cystitis, you are not alone! There are many of us who are where you are and have felt what you are feeling.

According to some medical journal articles, 24.6% of I.C. patients show symptoms of Fibromyalgia, compared to 3.2% of the general population. The theory is that “I.C. might be a disease within the spectrum of chronic fatigue and pain syndromes”. — read more

Ellie says on her blog Life ,Not Just Existence

It’s frustrating when a chronic illness interupts your life (in my case Chronic Fatigue Syndrome), but everyone loves a challenge and at the moment mine is to keep enjoying a fulfilling life, not just existing.

Vicki is learning to live with Chronic Fatigue Syndrome at Manchester M.E.

I’ve been sitting around waiting to be well enough to work and that hasn’t happened, so instead i’m being pro-active, I’m going to try and find a job that works around me instead of it being the other way around. — read more

Well these are just some of the many bloggers that are blogging on their personal struggles with chronic illness. If you are a BlogHer who is also blogging on your trials and triumphs with chronic illness…I hope you will leave a comment and a link to your site, and tell us how blogging is helping you cope with your disease.

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5 Responses to “Women Blogging About Living With Chronic Illness”

  1. Jill said

    Thanks to your posting, which I received via a google blog alert, I learned about blogher and joined. I’ve been online for many years.. having founded one of the first ever health communities on web back in 1995. Ours was and/is dedicated to Interstitial cystitis and tells the stories of thousands of patients, as well as new developments, research, resources, etc. Our blog, the IC Underground, is new but will have more indepth pieces that some of the news stories that appear in our forum! Glad to see so many women out, active and supporting each other. Chronic illness is so often very isolating such that, even when we’re feeling better, we still have lost our social contacts. Blogging changes that and gives us all a chance to connect yet again!

    Thanks for the new resource
    Jill O.
    President & Founder, IC Network

  2. Hi Jill – Thanks for the comment. I totally know what you mean about people with chronic illness losing many of their social contacts, and blogging really does give us the opportunity to connect with people we otherwise would have never been able to.

    I’m glad you found BlogHer, it’s a great community of women. If you haven’t already you should comment on this post at BlogHer (which is where I originally posted this)…
    http://blogher.org/node/19718
    you can also post on the BlogHer forums to introduce yourself and your blog.

    Thanks again for making me aware of your site.

    Catherine

  3. Alix Mayer said

    Thanks so much for including my story in your article. The past 10 years have been a huge struggle for me, but thankfully I was armed with a research background and figured out how diet was impacting my illness. I have about 80% of my health back and it turns out I may not have lupus, but there are still a couple MDs who say I do. I might be more in the CFIDS camp and am pursuing some treatments for high titers to EBV and HHV6. Red marine algae has shown strong HHV6 inhibitory activity in vitro and according to “From Fatigued to Fantastic” by Jacob Teitelbaum, MD, Olive Leaf Extract might also be a good inhibitor of HHV6.

    There is a clinical trial about to begin at Stanford right now for CFIDS people with high titers to HHV6 and EBV using valgancyclovir (Valcyte) for 6 months. That might show some promise, as 18 of 20 patients who have been treated prior to the trial are reporting near complete recoveries. The other 2 patients didn’t have super-high titers, so the upcoming clinical trial will only focus on those with the highest titers. Just thought all of you out there with chronic fatigue and the presence of those viruses might want to know this news.

    In health,
    Alix
    http://www.mednauseum.blogspot.com

  4. Thanks for your comment Alix. I wish you the best in your treatment, and hope you will let me know how it all works out for you.

  5. Velda Kyle said

    I am so thankful for all your comments. They help to keep me on the road to recovery. I suffer with several illness but the most debilitating hasbeen arthritis. I have found that the faith that I am recovering has been my best medicine. In hopes that my experiences might help some one, I blog about them at http://livingwithachronicillness.blogspot.com/ It is encouraging to know that your are not alone in your situation-no matter what it is.

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