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I am a 44 year old single mother of two beautiful children; Brian 20, and Nicole 17. Being a mom is the thing I am most proud of; I could sit and ta...
 
 
 
 

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BlogHers - Living, Coping, and Blogging with Chronic Illness

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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

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kittyb2113 5 pts

Hi,

I have been living with ME/CFS for the past 2.5 years but have only recently started blogging at:

http://www.mycfs.me

I'm enjoying it already although also finding it hard at times. Loving all the blogs here, going to nosey through them now!! :-)

kitty x

TrishRobichaud 5 pts

Looking forward to connecting with others who live with chronic illness or disability!

Trish:-)
•.¸¸•´¯`•.¸¸.ஐ
http://www.ChangingPaces.com

jennykanevsky 5 pts

www.jennykanevsky.wordpress.com ( http://www.jennykanevsky.wordpress.com )

Well, here I am along with the rest of you courageous women. Happy to say I'm not just living with fibromyalgia but for the most part thriving. I get such comfort from reading everyone's words and from knowing I'm not alone. My most recent "weird" health issue is one I'm sure many will relate to check out: http://jennykanevsky.wordpress.com/2010/04/12/in-y...

Sherrillynn 5 pts

I have a blog called The Invisible Chronic Illness Experience, http://theiciexperience.blogspot.com. It's about the experience of--you guessed it--living with invisible chronic illness. I was flattered to be asked to present a program on the subject of "Blogging About Your Illness" for the National Invisible Chronic Illness Awareness Week Conference (http://invisibleillness.com), on September 12. The guest lineup is truly awe inspiring. If you can't make it to the conference as it is happening, transcripts of all of the sessions will be available online a few weeks after Awareness Week. The transcripts will be available long term. The ones from the 2006 conference are still posted. I hope you will find something interesting on the site or at the conference, which is September 10th through the 14th. It's all free!

Donimo 5 pts

I'm sure most women living with chronic illness have been told about a million things that they should be doing to get better. I've had chronic pain/illness since I was 16 and believe me, I've got quite a collection of better do's, should's and ought to's. I've just started a new blog wherein I post these words of wisdom in a greeting card fashion. The statements lose their weight and become quite amusing. We have to laugh, right?

www.chronicholiday.blogspot.com ( http://www.chronicholiday.blogspot.com )

Please drop by and add your own doozies!

Thanks for these listings, Catherine!

Catherine Morgan 5 pts

Hi Sandy - Thanks for sharing your experience with heart disease, and the link to your blog. It's so important that women understand just how "at risk" they are, I think there are still many who don't. I'm adding a clip from the first paragraph of a post I did on this subject, most troubling of the statistics to me is this bit of information...Women are less likely to survive a heart attack than men.

You should know that…Women are at a very high risk for heart disease and heart attacks. In fact, heart disease is the leading cause of death among women over 65. American women are 4 to 6 times more likely to die of heart disease than of breast cancer. Women are also less likely to survive a heart attack than a man. -- This is from a post of mine at Women 4 Hope - Women and Heart Disease--Knowing The Facts Could Save Your Life ( http://women4hope.wordpress.com/2007/01/24/women-a... ).

Thanks again for your comment Sandy.

Contributing Editor Catherine Morgan
also at Women 4 Hope ( http://women4hope.wordpress.com/ ) and CatherineBlogs.com ( http://www.catherineblogs.com/ )

sandylevin 5 pts

Add me to the statistics of women with heart disease. I had a heart attack in July, 2006. Before that time, I thought I was a healthy 54 year old who ate the right foods, exercised, had low blood pressure and normal cholesterol. But my Type-A personality got the better of me. My chronic stress, resentment and anxiety sent my arteries into spasm.

It's been a year of rehab and examining every facet of my life. I've started blogging at: Living With Heart Disease ( http://livingwithheartdisease.blogspot.com )

I share my own insites with others and talk about issues surrounding women and heart disease. Stop on by sometime.
Sandy

Catherine Morgan 5 pts

Well, that is just great. Thanks for sharing this. I think we all believe that we can't really make a difference on a political level. But it seems from what you are saying, that maybe we can. That's a good thing to know.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

jrtjosey 5 pts

Yes, My State Senator helped me get my soc. sec. disability. His office called SSI every week asking the status of my claim, so it never got buried. I also wrote to my local Senator on the State level about dead beat dads getting heat assistance from the government when they owe their children thousands of dollars. She immediately introduced a bill, it didn't go anywhere, but it was nice to have someone agree with me. She also points me in the right direction when I have other questions about what resources are available to my family and friends.

jrtjosey
Everyday I wake up is a gift from God!

Catherine Morgan 5 pts

So do you find these agencies to be helpful, or have you been frustrated? Do you find writing to your State Senator for guidance to be helpful?

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

jrtjosey 5 pts

I too like to stay on top on the agencies that are out there for assistance. I have had work experience with Medicare and Medicaid, and I love writing to my State Senator for help and guidance.

Catherine Morgan 5 pts

Not at all Laurie. I understood exactly what you meant, and I appreciate your comment.

But I did go back and forth on whether to include cancer in this particular post, and I did decide not to. I just wanted anyone who might be wondering why, that it was because I didn't think one or two links on cancer would have been enough.

I thought it would be better to wait and do a separate post on how cancer has in many ways become a chronic illness - This way I could include more bloggers, and essentially make a more complete post.

In-fact since we are on the subject - I would very much like any input on other women that are informing and inspiring by blogging about how they are living with their disease. If anyone knows of specific blogs I should check out, please drop me an Email or add a link to this comment. Thanks.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

laurie 5 pts

i hope you didn't take my comment as a criticism...I meant it as "yeah! This really speaks to me!"

Thanks for sharing all these great links.

laurie
www.notjustaboutcancer.blogspot.com ( http://www.notjustaboutcancer.blogspot.com )

Catherine Morgan 5 pts

I agree completely that cancer is often times also a chronic condition. And, I didn't mean for it to appear that I overlooked this condition for this post on chronic illness.

I actually considered putting a link to breast cancer, and then I thought it might be a better idea to do a whole post (in the near future) on cancer as a chronic illness. This way I would be able to feature many more bloggers as well as types of cancers.

So I apologize if it seemed I overlooked this important condition, and I promise that I will be doing a post on the issue of cancer as a chronic illness in the very near future.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

Catherine Morgan 5 pts

Hi Kerry - I'm happy I was able to bring attention to your blog and to the condition of diabetes. Too often people suffering with chronic illness feel alone and uninspired, your blog and others are working to change that...and that is commendable. Thank you.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

Catherine Morgan 5 pts

Thanks Nordette...I'm happy you found the post to be resourceful, that is exactly what I was going for. I agree that these blogs are both informative and inspiring. Thank you for the recognition.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

Nordette Adams 6 pts

Thank you for listing these informative and inspiring blogs, Catherine. I consider this post to be a resource.

"Love is liquid. Brew and be drunkards!" ~~Nordette ( http://jerseygoddess.blogspot.com/2007/04/april-is... ) And here's a link to the blog ( http://jerseygoddess.blogspot.com/ ).

ratherbesailing 5 pts

I completely agree that cancer can be seen as a chronic illness. One of my aunts has MS and the other suffered from breast cancer. Each of them had had their own health issues to watch carefully, their own embarassments and their own frustrations. I just wish I had the power to make everything ok!

sixuntilme 5 pts

I am completely honored to have my blog featured in your post - thank you so much for the mention of Six Until Me, and for helping spread the word so that other women living with diabetes can connect and inspire. :)

-- Kerri.

Six Until Me. ( http://www.sixuntilme.com )
EXIST Magazine ( http://www.existmag.com )

Catherine Morgan 5 pts

Hi Margalit -- I think the idea of highlighting the political side of living with chronic disease is very important.

I know there are many people dealing with these same types of issues so I wanted to create a link to some of the specific posts on your site that deal with these frustrating political problems. I hope you don't mind but I went over to your site ( http://outtamymindwithworry.blogspot.com/ ) (looks great, I'm going to have to come back when I have a bit more time)...and I searched your blog for "Medicare" ( http://outtamymindwithworry.blogspot.com/search?q=... ), so someone reading this can easily get to some of your posts on this issue just by clicking on the link ( http://outtamymindwithworry.blogspot.com/search?q=... ).

Thanks for your comment.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

Catherine Morgan 5 pts

Hi Rachel - Thanks for sharing with us about your experience with multiple chronic illnesses. I think it is really important for others that suffer, to see they are not alone...and blogging is such a great way to do that.

Your idea about a "pain-o-meter" sounds interesting. It would be a great way to let family and friends know how you are feeling...it's so easy to just say "fine" when someone asks us how we are.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

margalit 5 pts

Although I'm not just blogging about my chronic deseases (yes, plural), I do write about the frustration of living with hypertrophic cardiomyopathy, congestive heart failure and diabetes quite often on my blog. Mostly I like to highlight the political side of living with a chronic disease, such as dealing with Medicare, Medicaid, SSDI, and various federal agencies, all of which cause me more frustration than my teenage twins.

Margalit ( http://outtamymindwithworry.blogspot.com )

mia3mom 5 pts

It's funny - I consider Celiac Disease a lifestyle, not a chronic illness, but I guess it is. I've also lived with it for over 4 years, so there's more acceptance.

Right now I'm living with Celiac Disease, and then Lyme Disease induced Fibromyalgia (which isn't responding to treatments), arthritis, and something else as yet unknown - I may also have CFS, or it might be due to meds or unremitting pain. I've been in chronic, severe pain for 18 mos, and have girls age 9, 7, and 3 1/2.

My blogging helped me first get diagnosed with Lyme and treated. It's also helped me find different doctors, treatments, and ideas. In addition, it has given me a place to talk about my pain when my family just doesn't want to hear any more.

I need to rig up a pain-o-meter on my blog: my family and I decided to use the Homeland Security code to discuss how I'm feeling. Today's reddish-orange.

Thank you for bringing attention to other chronic disease sites!

Rachel - a Gaggle of girls and sites
blog ( http://www.ourgaggleofgirls.com/agog ), recipes ( http://www.ourgaggleofgirls.com/recipes ), and book reviews ( http://www.ourgaggleofgirls.com/books )

Catherine Morgan 5 pts

Hi Laurie -- Thanks for sharing your link. I agree 100% that in many cases of cancer, the diagnosis can be looked at as a chronic illness.

If you have a story about how writing your blog has helped you cope with any aspect of your illness, I would love it if you would share that with us too.

Thanks again Laurie, you always have insightful and thought provoking comments.

Catherine Morgan
Women 4 Hope ( http://women4hope.wordpress.com/ ) and Be The Change You Want To See In Yourself ( http://catherinemarie.wordpress.com/ )

laurie 5 pts

My medical oncologist encourages his patients to think of Stage IV cancer as a chronic illness. The descriptions you post above certainly speak to my experience.

I think that, in my case, this is a hopeful lens to look through - it implies an illness to be managed, with setbacks, yes but also many good days.

laurie
www.notjustaboutcancer.blogspot.com ( http://www.notjustaboutcancer.blogspot.com )