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.

That's So Cliché...

The other day I was feeling a bit desperate which led me to write a list of motivational words to cheer myself up.  As it turns out, it did the trick so I thought I’d share it with all of you:

Be patient.

Things will get better.

Time heals all wounds.

All is not lost.

Family and friends aren’t going anywhere.

Seek gradual improvements.

Be good to yourself.

Breathe.

Find comfort in small things.

Listen to your body.

Get a second wind (or third or fourth…).

Start small and grow.

You are not your illness.

Strategize, make plans, set goals.

Stay in the present.

Don’t compare yourself to others.

Never give up.

Stop feeling guilty.

Stop judging yourself.

Love yourself.

Give yourself some credit.

Be proud of your accomplishments.

Pamper yourself.

Nurture yourself.

Learn to let go.

Don’t sweat the small stuff.

Be appreciative.

Rise to the occasion.

Conquer your fears.

Relax.

What Goes Down, Must Come Back Up

Lately, I’ve been doing a lot of reflection on my life and its most recent events.  Looking back, this has been a year of great loss.  I have lost many of my abilities due to my health issues, and as a result, I have lost my sense of confidence and direction in life.  At the beginning of this year, I was dealing with chronic fatigue syndrome and fibromyalgia but it was very manageable and did not stop me from being in school, having a boyfriend, and keeping up with my friends.  Now, I am at home where I only have one friend, have been dumped, and have the hobbies and activity level of someone in their 70’s rather than someone in their 20’s.  I sleep the majority of the day, knit, and have even taken up watching Jeopardy and Wheel of Fortune every night with my parents.  In addition, I have had two very traumatic trips to the hospital due to fainting spells.  I’m hoping to go back to school for next semester but nothing with me is ever certain.  So where do I go from here?

Well, what I’ve concluded is that the only direction is up.  I have been thoroughly cast scanned and MRIed (yes, these are verbs in my book) and it has been concluded by several members of the medical community that I am not dying.  This fact alone eliminates any further surprises.  Other than that, I know for certain that my friends (though they may be long distance) and my family aren’t going anywhere.  While I don’t do much every day and I don’t have much of a direction, I’ve learned to believe this is only temporary.  And as far as my health is concerned, I have a new doctor and am going to defer to his suggestions.  All I can do in the meantime is focus on minimizing my anxiety and stress level.  I can’t predict the future and trying to only leads to fear. 

I guess what I’m really trying to say is that I need to live in the present and take each day as it comes.  When I feel sad, I will let myself feel sad.  When I feel tired, I will sleep.  And when I am in pain, well … they actually make pills for that!  And while at times this seems like a pretty pointless existence, it is only a temporary state. Though gradual, I do see improvements in my health and I know from past experience that my illnesses tend to peak and plateau.  If nothing else, I am living to see this thing through and find out what the future holds.  I do believe that there must be some purpose to all this suffering and that whatever/whoever is out there (g-d or whatever you believe in) isn’t just being cruel and making an example out of me for no reason.  I might hold the key to some answers or at least be able to guide someone else through a similar experience someday, who knows?

Questions to Consider:

What keeps you sane?

How do you deal with times when you are homebound?

How do you confront loss?

Elimination Diet

About 4 years ago, I began to experience very troubling acid reflux.  Taking the traditional route I saw a GI doctor and had an endoscopy.  The test came back showing mild irritation so I was tried on several different proton pump inhibitors but got no relief.  The only thing that seemed to help was TUMS, which I began taking several times a day.  About 2 years later I started seeing a new doctor who put me on Aciphex, a proton pump inhibitor I had not tried before, and told me that I had a large list of food allergies (corn, cow’s milk, tomatoes, yeast, and all red, blue, and purple fruits).  I felt some relief but not completely so I continued with the TUMS and continued to deal with the discomfort as best I could. 

My symptoms were manageable until March of this year when I went to the emergency room with stomach pain so severe that I thought my appendix was bursting.  I was evaluated and sent home with a week’s worth of pain medication.  I was told to follow up with a GI doctor if my symptoms did not resolve by then.  After a week spent hugging my heating pad, I was out of pain medication and left with serious discomfort so off to a new GI for another endoscopy as well as a colonoscopy.  Both came back negative so I was given a diagnosis of IBS, the diagnosis you get when you have lower GI issues with no visible explanation.  I was put on every anti-spasmodic medication available but they did nothing.

As a result of this negative experience, I began seeing a chronic fatigue and fibromyalgia specialist who told me that the allergy test I had been give 2 years earlier was a scam and that I had avoided the list of foods for nothing.  At this point, I decided to take matters into my own hands.  I believed that if there were no visible abnormalities in my esophagus, stomach, colon, or intestines, then my problem must stem from what I put in my body.  Based on my own research and discussion with the new doctor, I decided to try an elimination diet. I went on Amazon.com and settled on the book “Dealing with Food Allergies” by Janice Vickerstaff Joneja (to look into it further or buy one for yourself, the link is available in "My Favorite Things" section). 

The diet begins with 10 days of the “few-foods elimination diet” which includes a small (emphasis on small) list of food that do not cause allergies in the majority of the population.  This was not easy.  By the end of the 10 days I would sit and watch people eat because I was feeling so deprived.  The next phase of the diet is called the “challenge phase” in which food groups are reintroduced sequentially.  I am still working on this phase but so far I have discovered that I have sensitivity to egg yolks, uncooked tomatoes, cauliflower, and sugar in large amounts.  I have still not reintroduced dairy, wheat, yeast, and alcohol (except for vodka in honor of my 21^st birthday). 

The results?  The feelings of starvation and deprivation were totally worth it.  I am not completely symptom-free but my upper and lower GI issues are the most controlled they have been since they began.  If anyone out there is struggling with chronic fatigue syndrome or fibromyalgia and GI issues I would definitely recommend looking into food allergies and trying an elimination diet.