being pioneers

[Gabes-Apg]

whether we are comfortable in the role or not, as people diagnosed with MC, we are pioneers.

MC** is a condition that is relatively unknown not just to the general public but to the medical community world wide. the medical systems in most countries are quite fragile with limited ability to support people with conditions such as MC.

the medical fraternity itself is very tribal... it takes years to join the tribe, many years and published articles to be acknowledged in that tribe. based on that culture it will be rare to find a doctor who is willing to acknowledge never mind encourage treatment protocols outside the acceptance of the tribe.

this also applies to functional/wholistic practitioners, yes they take a wholistic approach albeit the treatment protocols will be based on 'the majority' ie what is known, published, documented, taught.

i think we as MC pioneers need to have realistic expectations of the medical system we live within given these limitations, and adjust our mindset, attitude, approach accordingly.
be thankful for the families, partners, friends, work colleagues who do 'get it' and give us unconditional support
have compassion for those that dont, whether what we are living with scares the sh*te out of them, or they are unsettled that we are accepting and moving on with out pioneer role despite the challenges, or those flares that are like wild crazy summer storms dont scare us as much as time goes on.

to our MC tribal leaders (originators/moderators/regulars with awesome advice) heartfelt thanks for all your hard work to date, sharing that knowledge and making our journeys easier and less intense.




MC** meaning the collective of conditions discussed on this forum

[tex]

Gabes,

I certainly agree with your thoughts, and I appreciate your insight. "Pioneers" is an appropriate descriptive term, because just like other pioneers who have gone before us, we were dissatisfied with the way things were going, so we set out to find a better way of life, and along the way we learn to be self-reliant. And as you say, like pioneers, we help each other, whenever help is needed.

As usual, you've written a very thoughtful, and inspiring post.

Thank you for your insight,
Tex

[nancyl]

Gabes,

Well said. Pioneers we are.

And, like Tex said, we are all here to help each other. Thank goodness for that. I can't even imagine where we would be without each other.

Nancy

[cjbndtsn]

After watching the horrible news on TV of the CT shooting at the Elementary school, being choked up as it was watching this......I then read Gabes post. We are blessed for one another, blessed for the advice shared, blessed for the friends created and blessed that we know the routes we need to take and the diets we need to follow to capture our own health and well being. I truly believe we can get through this and continue to live our lives the best to our abilities. Those poor little children killed today will not and their families will probably never be able to enjoy a Christmas ahead. I hope we all pray for those families and toast them and think of them at our own Christmas festivities. Just because we can't eat the old favorite foods.........at least we have our families at such a time. Gabes.........you hit the nail on the head.......thanking all the pioneers and moderators, newbies and experienced bloggers for everything we have shared.
I know my life has become a better life all around because of my MC.........rough way to get there but now that I am doing so much better....I eat better, exercise more, taking Yoga.........and best of all RETIRED from that stressful job. Thank You all

[Carriagehouse]

Gabes,
Very insightful and well-spoken. I know I'm brand new to this, but the information I've gathered from this group alone is invaluable. I already feel I can deal with LC and it's many challenges, and on those days when it feels like too much, I have an entire support group to turn to. I am so very grateful for this forum and all the thoughtful, intelligent, and compassionate people who take time out of their day to listen and respond to each of us. Thank you.

[wmonique2]

Good post Gabes. Good thinking.


Love,

Monique

[DebE13]

Well said, Gabes.

I was asked why I didn't sign up for the employee Christmas party and I declined because its easier for me to go home for lunch since I live about two minutes away. I'm not a social person anyway and generally steer clear of any sized groups of people. Someone made a comment that they knew why I wasn't attending and jokingly said that I didn't look sick and implied I gave the reason for an alternative motive. It was not at all mean spirited but it just stuck in my head. I feel awful all the time and really wanted everyone to know what an accomplishment it is for me to come to work everyday. Of course, I wouldn't get that personal. I usually joke and say I'd be more than happy to eat (insert forbidden food here) but I will get sick and then with a big smile tell them ill have to go home, which might be a not-so-bad idea even though there is no truth to the statement. That usually makes for a god chuckle and the conversation continues.

We are pioneers whether we want to be or not. I find coworkers often ask me questions about a variety of food related interests.

[Gabes-Apg]

Deb
that is part of why i wrote the post. Some people set out with great intent to be pioneers, others sort of fall into the role do ok and others (like some of us) get 'forced'?? 'pushed'?? into the role whether we like it or not

when you read about pioneers and pioneer archetypes it does involve isolation/alienation/'arrows in your back'/quizzing and justification.
there is HUGE socialogical pressure to follow the pack. (it is the principle of most marketing campaigns)

hang in there. times like xmas seem to have additional pressure.

[Joefnh]

Deb in my first year with MC I reacted the same way you did, but decided to do things differently the next year. I decided I was not going to let myself be alienated due to MC and gatherings like the Christmas party. I spoke with the group secretary who was organizing the event and offered to cook a couple of dishes and bring enough for all to share.

In the first year I did this I made my BBQ ribs recipe with some well cooked veggies on another dish. I made 4 full racks of my GF,DF,SF ribs and they went very quickly. It's now a tradition and I'm asked weeks beforehand if I'm making my ribs this year.

It doesn't have to ribs obviously it can just be a favorite recipe. In taking control of how the event affected me I found that I could contribute and enjoy in these events and still eat safely. Now the group counts on my contribution. I guess I found a way to convert a negative into a positive.

[MaggieRedwings]

Morning Gabes,

Such an insiteful post and yes - some of us are definitely pioneers. Just being here from the original group of 10+ years ago when no one even heard of what we had and we kept plodding along to establish ideas and new ways of eating to go through dealing with this disease. We have had some rough times with the board but the family that exits here and exchanges ideas, diet, ways to deal with the disease keep me feeling that there is a pot of gold at the end of the rainbow. Your post gave me a true lift to the day.

JOE - I deal the same way - especially with community events as we are in a 55+ comminunity who loves to do gatherings. I take a very large dish or 2 and then I have something that I can eat and they keep asking for some of the dishes for a return visit.

Love, Maggie

[Zizzle]

Gabes,
I like to think of myself as a pebble in the shoe of my allopathic doctors. Small and insignificant, but enough to make them uncomfortable.

Keep searching!!