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.

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