Vote for WPI!

The Vivint Givesback Project needs your help in honoring local charities that are doing heroic work in communitites across the United States.  You can vote for one charity per day.  The charity that has earned the most overall votes will then be awarded $250,000.  The remaining charities that earn the most from each of the regions will each receive a $100,000 donation. 

Rather than sitting around waiting for a new pill or cure to come along, show support for the doctors in our corner!  Our illness robs of of our power to do much of what we want to do in life but it can never take away our power of speech.  The WPI is dedicated to researching neuro-immune disease with a big goal of developing new treatments for those suffering from CFS.  Right now WPI is in 6th place overall and 1st pace in the region.  If we all vote we can push it up to number 1! 

Chase Community Giving: Vote for WPI!

Chase Community Giving is holding a charity contest offering a share in $2,500,000 to the 100 charities that receive the most votes from Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities vying for votes and they need our support! 

WPI is a vital organization to the CFS and fibromyalgia community that drives significant research, awareness, and advances in patient care.  With enough funds, the institute provides hope for the discovery of definitive diagnostics, treatments, and even a cure for these life-altering diseases.  WPI’s work also contributes to advances in the understanding of other neuro-immune diseases, including autism and Lyme’s disease.

Voting is easy and only takes a few minutes!

If you have a facebook account:
1. Go to http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" at the top of the page
3. Go to http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and select vote!

Remember, every vote counts!  Take a minute of your day to make a difference. 

Event for Fellow Bloggers

If you are interested in learning about blogging and creating communities around chronic illness, join Lisa Emrich of Brass & Ivory, a prominent MS blogger, Amanda Dolan of WEGO Health, and Jenni Prokopy, editor of Chronic Babe, tonight at 8pm EST for a live Webinar entitles "Navigating Your Health Narrative".  

For more information, check out: http://blog.wegohealth.com/2011/04/04/upcoming-webinar-navigating-your-health-narrative

And to register to attend or receive the audio afterwards, go to: http://info.wegohealth.com/navigating_your_health_narrative

I am a Product of Modern Medicine

Last night on CBS news with Katie Couric, news of a study on Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue Syndrome was broadcast (to find out more, check out http://www.prohealth.com/library/showarticle.cfm?libid=15959 and the news broadcast at time point 17:14 at http://www.cbs.com/cbs_evening_news).  The study was conduced at the University of Medicine and Dentistry of New Jersey and claims that, unique proteins discovered in spinal fluid can distinguish between CFS and Lyme’s disease as well as from people in normal health.  If chronic fatigue syndrome can be detected through specific biomarkers, it is much harder to deny its existence.  In addition, such a study will give great insight into new treatments as well as allow for differentiation between CFS and Lyme’s disease (which present with very similar symptoms).  Before I go on, let me just say that I am in no way a medical professional and that I can only offer my opinion on the matter.  With that being said, if this study proves to be valid, it is a pretty big deal.

Having lived with chronic fatigue syndrome, I try my best to keep up with current research.  Whenever new information is released, I am reminded of the large role that modern medicine plays in my life.  For as many times as I’ve felt let down by the medical system, I can honestly say I wouldn’t be here without it, or at least I would not be the same person.  My thyroid would not have the capacity to control my body’s metabolism.  My POTS would leave me unable to walk or stand and my irregular blood pressure would take a toll on my heart.  I would be severely anemic.  My stomach would probably be a mess. And if that wouldn’t be enough to kill me, I would probably be depressed enough to commit suicide because my neurotransmitters are so screwy.  I don’t mean to sounds dramatic, but by having tests available to find my deficiencies and taking pills 4 times a day to counteract them, I am making my life livable.  And that’s a hard pill to swallow (pun intended).

I often hear from family and friends, “everyone has something” or “we’re all on pills.”  While these comments sometimes feel like they minimize my struggle, they do hold some truth.  In the past, there was no such thing as high cholesterol, Liptor, and Aspirin regiments; people just dropped dead of heart attacks.  Today, basic needs such as dentistry and orthodontia allow people to eat food with the nutrients necessary for survival.  If I hadn’t worn braces for 4 years and had several teeth removed, I’m not sure where I would be (probably in dentures or with a lot of extra teeth like a whale).  And then of course we can’t take for granted the fact that most of us in America have proper nutrition and hygiene to allow for basic functioning and prevention of disease itself.  We are so lucky that if our sex lives aren’t satisfactory, we can take Viagra to make that connection good again.

I guess what I’m really trying to say here is that modern medicine has pervaded our lives in immeasurable ways.  The bottom line is it makes chronic illness possible and it is the reason I am able to sit here and write to you all.  We are living longer than ever and are increasingly more functional then ever, despite odds that say we shouldn’t be.  And it’s only going further.  So for as much as I harp on doctors who have denied my illness, made me feel like a lab rat, or given me harmful treatments, it seems to be part of the package.  In a way, I feel proud to be chronically ill because I represent the possibility of managing symptoms and living a full life.  At this point in my journey, I don’t expect for a miracle cure to come along and save me; I consider it a miracle to be doing what I am doing right now. 

Powerful Video

This video was made by Laurel from the blog http://dreamsatstake.blogspot.com.  Thanks Laurel for making this powerful video with such an important message. 

Happy Holidays!

Happy holidays everyone!  This year I decided to send out a holiday card (actually e-mail) to my friends and family with a bit of a chronic fatigue syndrome flare.  Check it out: 

Dear Family and Friends,

Happy Holidays!  This year, I have watched the holiday cards flood into our mailbox with smiling faces and kind greetings.  In the spirit of the season, I wanted to make a holiday card of my own, but with a bit of a twist.  This year has been anything but typical for me and I feel the need to update the people I love about it.  If this were any other year, you might be getting a holiday card from my family (emphasis on might because sometimes they just don’t happen) sharing my accomplishments like making the honor roll or taking a great vacation.  Unfortunately, this year my accomplishments have been of a very different kind.  They have included things like finding a medication to stop me from fainting several times a day and getting strong enough to stop using a wheelchair.  Perhaps I should start from the beginning.

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal.  In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years, which vary from fatigued but functional, to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a major flare up.

While I do plan to return to college this upcoming semester, chronic fatigue syndrome and fibromyalgia are chronic conditions that I will have to contend with for the rest of my life.  While my symptoms can be somewhat managed, there is always a threat that I will have another flare up like I did this year that will leave me unable to function and take care of myself.  However, there is some hope.  On October 8, 2009, a report was printed in the journal Science citing a possibility that chronic fatigue syndrome is caused by a HIV-like retrovirus called XMRV. Motivated by this discovery, scientists are working diligently to devise better treatments for people with my condition.

I have decided that I can no longer sit around and wait for a cure to come along for me.  I want to be part of the solution.  For five months I have been homebound.  I have felt hopeless, helpless, and my faith has been tested.  Knowing that there is a test available that might explain why I have suffered the way I have provides me with a glimmer of hope; but the fact that there is no treatment leaves me in a bad place.

This holiday it is my wish to raise money for the Whittemore Peterson Institute for Neuro Immune Disease, the facility that discovered XMRV and is driving research and treatment efforts.  I know that the economy is horrible and that everyone just had to shop for the holidays, but like many social issues of our day, beyond generating awareness, the only way to fuel action is through donations.  Up to 10 million U.S. citizens could already be infected by XMRV and our blood supply is contaminated. 

Below is a button that you can press to donate through PayPal using your credit card. Thank you so much for all of your support.  Have a wonderful holiday season and a happy new year.

Happy Holidays,

Marah


Like I did with my family and friends, I challenge you to make a donation!  Press the button below...

Vote for MCWPA's Ad Campaign for the Washington Post

As a CFS and FM patient who has struggled for years for answers within the medical community, I am always on the lookout for ways to support research and raise awareness of these illnesses.  Recently, the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient group, has been working on an ad campaign to run in the Washington Post.  The goal of the ad campaign is to encourage reporters to do a story the will delve further into the experience of CFS patients and generate awareness within the general population.  For years patients have not received the care they deserve due to lack of funding for research and a lack of public awareness about this problem.  MCWPA is sending the message that addressing the needs of patients is the responsibility of society, not just the patients themselves. 

Get involved!  MCWPA has designed 4 different ads and is allowing the public to decide which one will run in the Washington Post.  Cast your vote at http://mcwpa.org/2010/11/ads-ready-for-final-vote/.  Voting ends on Monday, November 29 at midnight EST.