Saturday 31 March 2012

A Voice in the Dark

The reason I started this blog was primarily to look for people like me. And find them, I did! Haha!


Living with Idiopathic Anaphylaxis has made me feel many times, as though I am in the shoes of Luke Skywalker when he crashed into Yoda's swamp planet, Dagobah. IA tends to wear one's patience and aptitude out. Aptitude for persevering and fighting on and on with no end in sight. Yoda had to break the young Skywalker to build and train where Luke's patience was concerned and the-never-give-up attitude. That is how I felt and still feel, forever being tested where my patience is concerned. And also where the 'fighting-spirit' is concerned. The never-give-up attitude. And to fight the best that I can and come out alive, in one piece.


No one will ever understand what we people with anaphylaxis go through. We can explain till the cows come home but they will never fully understand until and unless they step into our shoes and live our lives. The best that they can do is to encourage, sympathize and empathize with us.


So fellow 'Anaphylaxis-ians', I am glad that we have found each other. Though we are hundreds of miles apart, I am glad that we can share our stories, learn from each other new ways to survive or cope, and just to listen to each others' rants and frustrations!


Anaphylaxis is still not well-known by the mass out there. Let's join forces and spread the word out. Let's be the 'force' that will educate people of this condition. That there ARE people who are living with this condition, who have had to give up their jobs, their lives and their passion (and sometimes, even put their family life on hold) or even re-locate because anaphylaxis came along and turned their lives upside-down and inside-out. They are NOT demented people, not 'craving-and-crying-for-attention' people, not 'joy-suckers' people, not 'faithless-backslidden' people, and certainly NOT people of 'great-IMAGINATION-that-manifests-and-results-in-trips-to-the-ER!' I mean, if someone wanted attention, they would have joined some reality TV show to the likes of The Kardashians or 19 and Counting. Or maybe even Hell's Kitchen? Jersey Shore?


So let's be a voice in the dark until there comes a time, that we are no longer in the dark. That doctors will acknowledge that what we have and go through is REAL! And the scales will fall off the peoples' eyes.


Let's keep on fighting! What say you?


Like Yoda said, 'Do or do not. There Is No Try.'



6 comments:

  1. All anyone can do is fight!! Hey, that sounds like a great idea - reality TV show on someone with IA? Pitch it to a television producer in Malaysia. Write the pilot script and send it off. Put all kinds of dream world analogies and metaphors you are so good at to all the experiences, like a visit to hell. :) An out of body experience, your funeral. This might be one way to get more public education and awareness on the lack of medical supplies...

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  2. Great post. I asked some questions on my comment feed, but in case it's easier for you here, I am wondering what, if anything, has improved for you? Have you had severe episodes like your first few months again? Are you on meds?

    I am SO sorry that you are struggling with this. So glad to have e-met you. Hope it's ok I put a link to your blog on mine.

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    1. Food wise has improved. Though I am careful not to over-indulge in food with salicyaltes. My immunologist/allergist said that it is like a weighing scale. Once it reaches a certain, weight, cut back and go salicylate-free again. For example, if I ate tomatoes today, I would not eat them again for two or three weeks. And even if I eat tomatoes, it would be in minute amounts.

      I had a relapse on my birthday in 2010 which sent me rushing to the ER for a hydrocort 200mg jab. I used an Epi-Pen the moment I felt the symptoms of anaphylaxis.

      I am on 2 tablets of Xyzal everyday. I take them after lunch.

      It's ok to share. I don't mind. I blog to share and look for people like me. I am glad to have met you too!

      Take care!

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  3. Finding you has been one of the miracles that has come out of all of this for me. Yes, I keep fighting...and I pray throughout the day and talk to my Higher Power. I try to see all of the gifts in in, instead of the other way around. Maybe now, I am forced to put focus on myself..where in the past, it was everyone else for me..not me. I have certainly grown to appreciate each day, each moment to its fullest and live more in the present than ever before. Your blog and your sharing...support-have helped me more than I could say here in this short space. Yes, I hope there comes a day where there is public and medical attention given to this disease of the body. How many milligrams of xyzal do you take? I"m wondering why I was never prescribed this? Also, did your allergist give it to you? Maybe I should try it, if it is working for you...Okay then, with appreciation, respect, and wishes for best of health, Cynthia

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    1. Xyzal, 5mg, two tablets. But I have been told Ketotifen (the first generation anti-histamine) is better. No one has heard of Ketotifen over here. They go, 'Keto-WHAT?!'

      This was given to me by the doctor who looked after me when I was admitted of the anaphylactic shocks. The allergist/immunologist is not a practicing doctor anymore. He has retired. He is in another hospital which is VERY far away from my house.

      You take care! ANd all the best. One day at a time.
      HUGS!

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