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PostPosted: Fri Dec 15, 2006 12:33 pm 
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Joined: Thu Dec 14, 2006 6:16 pm
Posts: 3
Location: Utah
Ever since my daughter and I have been suffering together with her food allergies I have wanted to do something positive to make sure that I could help another person in our shoes. Finding out about selene's allergies has been the most heartbreaking lonely experience of my life and I don't want anyone to end up in the place I did; I was diagnosed about a month ago with an anxiety disorder and now I'm on zoloft. And its all due to all the terrifying thoughts of selene eating something she's allergic too, it even got as bad to were I started having frequent nightmares. :(

Well if anyone knows of ideas on what I can do to make my experience into something positive and help everyone as much as I can (i'm still learning myself) I'd appreciate it, thank you.

_________________
My daughter is allergic to Nuts, Milk, Soy, Eggs, and Beef. :(


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PostPosted: Fri Dec 15, 2006 3:51 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
That's a really good question, Brittany. And I like your attitude! :)

A few thoughts, looking back on our own allergic journey...

For me, the first positive thing I could do was to make sure I was keeping my kids safe. Make sure that the house was safe for them (for us that meant no peanuts, nuts or legumes at the time) and that I knew the rules for labelling, etc. so that I didn't accidentally feed them unsafe foods. Sounds "selfish", in that I wasn't helping anyone outside the family, but it was crucial for our peace of mind. When the allergies hit our family (2 kids diagnosed with severe multiple food allergies within the span of 6 months - a 2 year old and a 5 month old), I realized that for awhile, my family would have to become my "charity" and that all my "volunteer work" would have to focus on them.

After awhile I joined an online support group (it actually took me a year or two to find one :( ) and for me, the second positive thing was finding a community of people who "got it" and who could offer me info, support, hope, humour, etc. The positive in that is that I stopped feeling so desperate and sad and depressed and started to realize that we would be okay. So I was a happier mom and a happier human being, which was good for everyone.

As time went on and I got more educated and knowledgeable, I was slowly able to respond to other people's questions on the forum and provide advice and info. So for me the third positive thing was finally being able to give back to the community. I got so much from that group that I felt able to take on the job of leader of our local support group. (I'm like you - I hate the thought of someone else going through what we went through!!)

So now I'm able to help those in my local community. I've had people whose kids are newly diagnosed thank me for helping them and say, "I wish I could do something to thank you!" And I tell them that one day they will be in a position to help someone else, and that will be enough. For me, that's what it's all about.

And of course I now have the pleasure of being the moderator for the Talking Allergies forum. :)

And for fun, my sons and I have created two allergy super heroes (the main idea came from my then-6-year-old) called Epi-Man and Epi-Man Jr. You can read about them at www.epi-man.com . So now for us another positive thing is having fun with these 2 super heroes and also helping others become aware of life-threatening allergies, and giving allergic kids something fun to focus on with allergies - to realize that they can be heroes too by taking care of themselves, and their friends can be heroes by helping their allergic friends.

So what's my point? I guess you have to find a forum or support group and just share your knowledge and experiences. Even those who are very new to the world of allergies should share their ideas and insights, because we all benefit, newbies and old timers.

If you can find other creative ways to help others, go for it. You never know when what you say or do will help someone. Start small and see what happens. :)

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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PostPosted: Fri Dec 15, 2006 7:54 pm 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
Brittany, I think your first step needs to be getting comfortable with this your child's allergies. Helping other people often means hearing their problems and fears, and until you are at peace with your child's allergies, being burdened with someone elses fears will just add to your own.

It's been over 15 years since I was diagnosed with food allergies, and about 6 years since we discovered our son is allergic to insect venom. Although I do sometimes start feeling very stressed, usually I'm OK about it all. I joined an on-line support group many years ago, and I now volunteer as a moderator on that list.

I've also been able to help people face-to-face a few times. When a friend's son was diagnosed with the same food allergies as me I was able to give her a list of what specific brands are safe for him to eat. This could have caused me an extreme amount of stress because she decided it was just to time consuming to have to shop at more then one store to get the safe brands. :shock: She said he's *not that allergic* even though he reacts with an itchy throat just from smelling the food. It was hard for me to NOT scream at her that HE IS WORTH THE TRIP. Instead, I had to remain calm, and tell her I hoped she was right, and if she ever changed her mind to get in touch with me again as the *safe list* changes often. One important thing I learned is that to help others you do have to respect their comfort zone.

I've also been able to halp a friend that was arranging a children's church party and wanted to make it safe for a few pa children that were attending. Since my friend doesn't have pa she asked me for a list of safe brands and some recipes. I gave them and told her to check with the moms because they may not trust a company that I do.

I've also affected a few minor policy changes at my son's school by making suggestions to his principal. Changes that will keep all kids with health problems (not just allergies) safer.

********

I realize these are just little things. But, if one little thing makes one child safer, or one child happier, then it was worth my time. I'm not an organizer -- and I know it. But, talking one-on-one is something I can do.

_________________
self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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PostPosted: Sat Dec 16, 2006 12:15 pm 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
I agree with AnnaMarie that you need to get comfortable with your own fears for the time being. Take care of yourself first before you take care of others. Like Karen says, dealing with allergies is a journey, and I don't think you're ready yet. Allow others who have been there before you to help you and get your own anxieties under control.

As far as your anxieties are concerned, is it really an anxiety disorder when you're dealing with real concerns? An anxiety disorder is when a person has irrational fears and worries, it's more of a psychological thing. There is nothing irrational about food allergy worries, it's all too real. I have a feeling that once you know more about dealing with allergies, your fears will subside considerably. Knowledge is power. They won't always go away completely, and that's a good thing because it allows you to remain vigilant, but day to day living becomes easier.

Keep hoping too. Keep telling yourself that your child may outgrow some of her allergies and that a cure is being actively sought, that anaphylactic reactions happen rather rarely and that you do have the Epipen to counteract.

There will be plenty of occasions to help others later on.

_________________
15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only


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