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13

Sep

Fight Like A Girl

Posted by steph  Published in Endometriosis Awareness, Featured, support

Endometriosis sisters J and S posted a website on their social networking pages, which I want to share here.

The site is called  Fight Like A Girl, and was launched in April, 2010, according to the domain’s whois information, so it’s pretty new on the web. I like the site because it appeals to young women who are battling serious illnesses, including endometriosis. Some of the other illnesses covered on their site include cancer, diabetes, lupus, chronic fatigue syndrome, and fibromyalgia. There’s more, so check out the site today!

To quote directly from their website,

“The Fight Like A Girl Club was formed to provide a place where women battling cancer and other diseases, survivors, and loved ones can come together to share stories, experiences, hope, and encouragement with one another, a place where you can come to relax and devote time to yourself, a place where you feel accepted and cared about, a place to soothe your soul with meditations, poems, and inspirational quotes, to release your fears and anxieties through sharing and writing, to put your problems on the backburner while playing games and puzzles, to request Prayer from others who truly care, a place to CLAIM YOUR POWER!”

“Our mission is to provide a loving, safe, and nurturing environment where women battling cancer and other life-limiting diseases, survivors, and loved ones can come together to share stories, experiences, advice, encouragement, and hope with one another. Men are warmly welcomed, as well.”

“Our vision is that through sharing and connecting with one another, each of us will discover and claim the Power that is already within us.  Through cultivating and bringing together all of our ‘individual’ Power, we will create a ‘collective’ Power that will defeat cancer and disease once and for all.”

no comment

20

Nov

Examining online health records-keeping

Posted by steph  Published in news article, support

This morning I read a three-day old story on NPR, entitled “Patients Turn To Online Community For Help Healing“.

In that segment, three websites were plugged: Microsoft’s My Health Info, Google Health, and Patients Like Me.

I decided to check these sites out. I was thwarted immediately upon reaching Microsoft’s My Health Info page, because it wanted me to install Microsoft software called Silverlight (because they hate Adobe Flash for some reason). Nope, sorry, I won’t do it right now, thanks anyway.

Next, I checked out Google Health, and signed up. I shared the site with my female cousins who I suspect also have endometriosis. The site seemed alright at first…until I wanted to upload my medical files. Apparently I can’t just upload scanned documents – I have to go through some third party website, register there, and upload my medical documents there…or something. Another thing – while I can send email notifications to share my info with people, there doesn’t appear to be a forum or community to discuss my condition.
So I was not impressed with Google Health.

Lastly, I checked out Patients Like Me, and was thwarted at the sign-up page, because they do not have Endometriosis listed as a condition I can sign up to talk about!

Their website registration page has a sentence which reads, “Our current communities are for people with ALS/Motor Neuron Disease, Anxiety, Bipolar, Chronic Fatigue Syndrome, Depression, Epilepsy, Fibromyalgia, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson’s disease, and PTSD (Post-Traumatic Stress Disorder).”

I noticed the “Don’t see your condition? Request it here” link, and clicked through to fill out the request form to add endometriosis to their website.
Then I signed up on their site, anyway, choosing “Mood conditions (depression, anxiety, bipolar, OCD, PTSD, etc)” from the drop-down menu.
Endometriosis very often leaves me severely depressed, so it’s relevant.

So far, the Patients Like Me site seems like it’s doable. There’s a quick glance in chart format as to my mood and health, and there are forums for people to talk about their issues. You can search people with your same condition and find them in your geographical part of the world to really connect with.

Hopefully they’ll get that Endometriosis community going soon, because I really like the way they tie in symptom tracking and forum communities in one website!

In the meantime, for emotional support, check out the many sites I have listed on the right sidebar of this website, under “Online Support and Advice”.

For symptom tracking, check out the three sites listed in the left sidebar of this website, under “Symptom Tracking”. They are CureTogether.com, ReliefInSite.com and MyMonthlyCycles.com. I personally find ReliefInSite and MyMonthlyCycles the most helpful in tracking and more importantly sharing info about how endometriosis affects me, but CureTogether’s awesomeness comes in collating information from people who share their symptoms, and churning out reports and also a book to educate others! Register with one or all three if you wish!

no comment

19

Nov

Online support groups for endometriosis

Posted by steph  Published in Administrative, support

Two days ago, I was told about another online support group out there, so I want to make mention of it – it is called MDJunction. It stands for “Making A Difference” Junction.

I joined today.

I belong to a number of online support groups for endometriosis, and I check in when I can. I hope to see you there!

no comment

10

Mar

New endometriosis support group in Boston, MA

Posted by steph  Published in support

A new endometriosis support group has sprung up in the Greater Boston, Massachusetts area. Please check them out at greaterboston_endo · MA!
This support group was formed under the Endometriosis Association’s blessing.

no comment

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Don't Have Endo? Please Read!

  • The Letter From Survivors

  • Public Service Announcement!

  • We Are Not Seekers

  • What I Should Have Said

  • "...but have you tried..."

  • Sick Humor: The top ten worst
    suggestions commonly given to
    someone with a chronic illness


  • Our Life In Comics

Important Pages

  • Research and Medical Journals

  • Myths about Endometriosis

  • YouTube Video Blogs

  • Applying For Disability

  • Be Aware!

  • Endo and Menopause

  • Is Endo A Cancer?

  • Job Discrimination

  • Fallen Endo Sisters

Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

Organisations

  • Endometriosis Association

  • Endometriosis Research Center

  • endometriosis.org

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • World Endometriosis Society

Symptom Tracking

  • CureTogether.com - Compare
    symptoms with people like you,
    Find treatments that work,
    Optimize your health

  • ReliefInSite.com - Real-time pain
    mapping, monitoring, analysis

  • MyMonthlyCycles.com - free
    personalized tools to track,
    monitor, and manage your
    monthly menstrual cycles!

Endo Products


  • HagRag.com - cloth
    menstrual pads

  • Lola's Loft - cloth
    menstrual pads

  • Naturally Hip - cloth
    menstrual pads

  • EndoFEMM - Microwavable
    corn-filled cloth heating pads
    (mention you saw them here
    and get 10% off your order!)

  • Bed desk - use for books,
    writing, laptop, eating while
    bedridden from the pain

Endo Blogs

  • Amanda’s Patch
  • Autoimmune Life
  • Barb’s Bumpy Ride
  • Brandzilla, living with endo & IC
  • Canadian Girl In Pain
  • Chronic Healing
  • Cure Endometriosis?
  • Dear Thyroid
  • Endo en Vogue
  • Endo Friendo
  • Endo Times
  • EndoJoanna
  • Endometriosis Interactive Support
  • Endometriosis Journey
  • Endometriosis, Among Other Things
  • Endometriosis: Facing The Battle Head On
  • Endometriosis: The Silent Life Sentence
  • Field Notes from an Evolutionary Psychologist
  • Foxy In The Waiting Room
  • Hope Garden
  • I Will Not Suffer In Silence - My continuing Endometriosis story
  • Jenny With Endo
  • Life With Endo & PCOS
  • light at the end of the tunnel
  • Lupron Journal
  • My Healing Journey
  • My Journey With Endometriosis
  • My Life With Endo & Infertility
  • Resilience
  • Sallie Speaks
  • SansUterus
  • Squidgeaboo’s Endo Blog
  • Stuff Sick People Have To Put Up With
  • Surviving Endo
  • That Girl With Endo
  • The Battle Continues…
  • The Ins and Outs of Endo
  • The Mud and The Lotus
  • Whispered Words …
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Medical Journals

  • Journal Of Endometriosis


Awards

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Recent Posts

  • The Dangerous Panic over Painkillers
  • Early detection of endo may soon be possible
  • Vitamin D Affects Genes for Cancer, Autoimmune Diseases
  • Endometriosis in African and African-American Women
  • Interesting read on treatments doctors do not seek for themselves
  • Prescription Painkiller Addiction: 7 Myths
  • Red and processed meat increase risk of bowel cancer
  • Cautious support for aromatase inhibitors in endo treatment
  • Unbelievable doctors in the 21st century
  • Epigenetics of endometriosis
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