Wednesday, June 25, 2008

Natural Rubber Latex Allergy - NLRA...Got Support?

What Do I Need A Support Group For???? It's Just A Latex Allergy!

Having a Natural Rubber Latex Allergy (NLRA) is no fun, financially, personally, emotionally, psychologically, physiologically, medically, or intrinsically. And, as experience has taught me, all too often, people have no understanding of the journey we latex-allergic folks take. It doesn't take us too long to become aware that ignorance isn't necessarily bliss.

Wishing your natural rubber latex allergy will go away, won't help.

Wishing the world would stop purchasing products with latex in them, won't help.

Wishing your doctors and all those pharmaceutical powerhouses could find a way to de-sensitize us to latex, won't help. Currently there is nothing available to us. There is no cure.

Wishing your doctors could offer you more than histamine suppression drugs and prednisone and epinephrine (the life-saver!!!) and these words, "Try to avoid latex as much as possible. Although, I'm not sure HOW you're going to do that...", won't help.

It takes a while to get over this hurdle, but FEELING SORRY FOR YOURSELF, um, won't help.

Carrying an Epi-pen (or a few) WILL help. However, if you've been diagnosed, chances ARE carrying Epinephrine.

I can't think of ANYONE that would WANT to be on the paltry offerings of Long Term Disability or Social Security over being gainfully employed in their area of expertise; of anyone that would WANT to give up what they know about living and the freedom to CHOOSE a path for themselves; of anyone that would WANT to live with fear of reacting anywhere & anytime; and, of anyone that would WANT isolation over liberation.

Ergo, supporting ourselves in the ways that we can (yeah for the internet!!!), writing our stories (or snippets thereof), documenting our journey's; sharing our information and learning to accept what is, knowing what we CAN do to empower ourselves (and holy dinah...I'm SURE we all know about telling ourselves about what it is we CAN'T do; and if you've JUST been will discover) and educating the rest of the world as we learn why having a support group (in person or online) and finding other amazing people who are all together on this page IS one of the best tools we have at our fingertips to help us COPE; LEARN; GROW AND MOVE FORWARD.

We have to do what we have to do. And sometimes it means accessing those resources available (even if not perfect) to us. That could mean resource manifestations online, through local or national Governments or through our own communities - like the offerings of the Salvation Army and food banks. NRLA is tough financially. The loss in the pocket book is just one of the many losses this journey brings us on. It's not just the loss of our personal freedom. At ground-zero, it's the loss of our independence that hurts. Becoming dependent on others, the social security and social welfare system is just the beginning of the various ways we end up...and it's silly not to recognize the losses we face in coping; and, in trying to carve out new paths for ourselves without dying from exposure.

Every one of us with NLRA wishes we were kidding about the severity of this allergy. Everyone of us with NLRA has learned and knows the value in support.

So, while we are all grateful for the life-saving Epi-pen(s), the life-line in strong and supportive online/in person groups may be the difference between weathering the stormy road of anaphylaxis/allergic reactions in personal darkness or braving the elements armed with support, friends, information and personal power.

You aren't alone. I can vouch for this group:

If you know of others, or have created one...then share.

Life sure is different from here. So, no need to go it alone.

Saturday, June 21, 2008


S'funny, I've spent sooooooooo much time trying to unlearn the crap stories that I chose to believe about myself for soooooooo much of my life; learning new steps to walk new roads so as to weave new stories with brighter tapestries and then...I get hit with the news that back in the village that I live in, people are talking. About me.

I didn't realize I was so interesting.

Nor did I know that APPARENTLY, I've been locked up in a some kind of mental institution for the past six months and that APPARENTLY, my mother is actually raising our children.

Nor did I know that APPARENTLY, my husband recently tried to come and retrieve his daughter (like he only has one!?!?!?) and my mother wouldn't let him take her.

Small minds, small town?

I'd like to know WHERE this triteness is born. In the mind of some unkind soul who (obviously) knows NOTHING about the life I've been/we've been living the past six months, a Province away from home, and feels they know enough about me & what we've been going through to take a stab at enlightening some locals with some lore?

Six months, with two daughters, away from their father is no fun. Living at your mothers house, no matter how lovely she is, when you're in your late 30's & married with two children is no fun. Arriving for a short visit after having an allergic reaction (to latex?) on the West Jet flight, & then accidentally touching a rubber band (not having fully recoverd from the flight reaction) and having a massive rebound reaction that sends you spinning headlong into anaphylaxis is NO FUN. Children watching their mother be hauled away by ambulance gasping for breath is no fun. Having multiple anaphylactic reactions in the weeks; the months following is no fun. Having allergy tests and multiple stays in Emergency due to latex and some unknown factors causing anaphylaxis/severe allergic reactions, is no fun. In fact, anaphylaxis is no fun at all. Being stabbed by a pile a of needles is no fun. Staying in hospital is no fun. Hospital food is no fun. Hospital pajamas are worse than no fun. Having to see an Oncologist to have bone marrow testing, is, I'm sure...not going to be fun. Wanting to go home, but unable to because your confirmed life-threatening latex allergy means public transport is too dangerous, is no fun. Wanting to go home but having to wait to see what the Oncologist is going to say, is no fun (8 more days...) Wanting to be able to play with your children anywhere outside of the home, but not able to, is no fun. Being housebound, until the Allergist and Oncologist figure out these triggers, or perhaps the rest of my life, is no fun. Going nowhere but your mother's yard, is no fun. Not being able to take your children to birthday parties (there might be balloons!) is no fun. Not being able to go out for dinner is no fun. Can't risk getting into a car that hasn't been 'de-latexed' is no fun. Can't risk going to work and no longer contributing financially to your household, is no fun. Can't risk going anywhere is no fun. Being away from the man you love, is no fun. Being away from your dog, is no fun. Not sleeping in your own bed is no fun. Your children being away from their grandparents is no fun. Your children being away from their friends and community is no fun. TRYING REALLY HARD NOT TO FEEL SORRY FOR YOURSELF, is no fun. Missing your friends and community is no fun.

The loss of my freedom & spontaneity, is no fun.

But APPARENTLY, someone in my community has taken it upon themselves to inform my community of some untruths. And APPARENTLY is having their own fun.

It'd be comical, IF it wasn't so blatantly nasty.

APPARENTLY, someone doesn't like me.

I can dig that. Not everyone is going to like me. And, until now, I hadn't even entertained the idea that I would be disliked by anyone - is that something ANY of us should really be concerning ourselves with? People either like one another or they don't. But I guess I have my head up my community bottom. Silly me.

The truth is really the only thing that hurts us. And the sad thing is, my truths are hurting me an awful lot at the moment. So, isn't this enough?

True, there are worse things the perpetrator of said untruths could be slogging off, but it seems to me that any of these untruths come from a place of malice and not, as I try to do in all of my endeavours and conversings, come from a place of love.

What's sadder is, my community is listening. Not necessarily believing, but listening.