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...you 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 diagnosed...you will discover) and educating the rest of the world as we learn more...is 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: LAForum@yahoogroups.com

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

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

Rumours

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.

Awakening

I've recently discovered the writings of Eckhart Tolle...and discovered the path I thought I was seeking has already been discovered. Eloquently, too. Oh Pooh.

Each of us create our own stories. We call these our "life".

The lives we create for ourselves are composed of not paragraphs, sentences or comma-splices but of the ideas we've chosen to believe about ourselves or; the ideas others have had about us that we've chosen to believe for ourselves. These ideas float around in our heads and give birth to all of our thoughts. Our emotions are our reactions to those thoughts. Each of us will give birth to multiple narratives in this lifetime. Most of us live lives in reactivity to emotions.

My hope is that the narratives we create are fully conscious ones; that we are aware. I'm not the only person wishing for this, and knowing that a Global consciousness IS possible. And it starts with us, individually.

Consider that our stories/narratives are connected to those stories of others and as such our consciousness is one sense of awareness away from collective and personal freedom. We Are. You Are. I Am. Being.

Woo hoo, I get to CHOOSE my story or stories from hereon in. I no longer need to live 'the Victim Story' or 'the Saviour Story' or 'the Sick Story' or 'the Gypsy Story'...just because I've chosen to believe that fear is my friend, that I need to be needed, or that I need to run from relationships every three years...doesn't mean that it is so, that things are or that I Am. Just because I've come from certain societal, communal, familial or personal beliefs, doesn't mean I have to keep entertaining them as real or definite. Fact or Fiction?

We are the Creators of our own Truths.

"Free your mind, and your ass will follow" are words by the 1970's Funk band, Funkadelic, and the backbone of Mr. Tolle's 'HOW TO ' manuals...the navigation through personal, emotional and spiritual transformation...the awakening of mankind.

More to follow...

Facebook

I haven't figured out if this 'social utility' is a godsend or my worse Japanese Anime anti-hero unleashed...BUT what I am grateful for is the ability to reconnect, catch up and refurbish relationships of days gone by. What brilliance.

It's a gorgeous detail in my life's journey because it has reopened roads I thought had fallen apart or closed.

So evil, as my friend Drea calls it, or not...I'm an addict.

Happy trails.

Personal Armour

I've decided this week that I no longer need my personal armour.

That's the flub I carry around on this 5 ft. 3 in. frame that my inner critic believes will keep it safe from 'everyone out there'...at 30-something years old, I've been walking with the wolves 'out there' and am fine. Mostly because, it's not all wolves.

I've spent a long time acquiring and keeping this flub.

I've even had spells of time where I've lost it all. ALL of it. Skeletal me.

It's irrelevant HOW I look to the outside world...people are still drawn to me, I am still drawn to them and relationship's still form. Keeping myself fat isn't going to change any of that, other than the amount of time I'm likely to be able to spend on this earth forging those relationships into life-long magical moments.

I still have sex.

Whether I'm 118 lbs or 180 lbs, and I'm sure (if I were) 280 lbs...although my ability and agility would be compromised at the latter...I'd still be able to be intimate with someone.

SO WHAT THE HELL AM I HOLDING ONTO TO THIS FAT FOR!?!?!?!?!?!?!?!?!!?

Underneath my loving, warm, amicable, often seemingly outgoing demeanour...is the little me that believes that if I'm fat then I am safe from the hourds of men and women who'll want a piece of my womanhood. There are a number of myths in this statement:

1. Fat people still get laid.

2. Not everyone I meet wants to have sex with me.

3. Even if they did...that's not really a bad thing...it becomes a bad thing IF they act on it.

4. There is no safety in fat. Only a lifetime of health issues, which include: an overtaxed liver, adrenal stress, onset of diabetes, depression, ill-body smells (fat people smell bad...I've yet to meet one that doesn't), nerve malfunction, inability to move freely, poor self-image and oh so many many more things that decrease the longevity and quality of living.

5. I am woman, whether I'm healthy or unhealthy (which is to say, ideal body weight or overweight) so wanting to be anything OTHER than that is ridiculous. I am a woman whether I'm fat or healthy. Better to be a healthy woman, than an unhealthy woman.

So...this past week, I've made the conscious decision that I don't want, nor do I NEED, my body armour anymore. It protects me from NOTHING. In fact, when I sat down and thought about it fully, clearly, fairly, non-judgmentally but rather matter-of-factily, I realized that I've created this pocket of self-delusion about my weight for almost an entire decade. If not longer.

I've blamed having babies for it. NOW I have the convenience of crapped out thyroid readings, weirdo liver readings, waiting to see an Endocrinologist-doctor-person, and a multitude of other health reasons, to NOT take responsibility for the fat person I've created. And, perhaps I do have a crapped out thyroid...chances are, I've created that problem, as quite frankly, I haven't always had this problem. It's 'crept up' on me, so my kind doctor tells me. Years of not loving myself, is more like it.

Nope...scarfing bread/toast/pasta before bed (because it makes me sleep better...apparently I use it as a sedative, which loads of people do) is a really bad idea. I'm not exactly getting a good workout at 10 pm, am I? Even IF I were to have rambunctious sex with my husband, it still wouldn't burn off enough calories...so, those carbohydrates get stored as flub.

I use carbohydrates as a sedative. My blood sugar spikes and then drastically drops (surprise...ok, not really, I'm hypoglycaemic...like soooo many North Americans.) Ummm, that toast knocks me out at night. It's better than valium. Or so I tell myself. Or have done.

(Meditation is a much healthier way of relaxing.)

This isn't all that surprising given my life history. In fact, this is fairly text-book case scenario.

WHAT I've never wanted is to be a statistic or a text-book case. And since I am...I need to shift that paradigm. And, the choice is MINE to make.

I can choose to feel sorry for myself and carry on looking and feeling the way I do (or getting worse) OR I can choose to get off the damned couch, go for a walk, MEAN IT WHEN I SAY I DO YOGA and damned well DO it daily (rather than once in a while), I can be kind to myself, take rests as I need them, choose foods that don't hurt me and understand the relationship I've had with foods that hurt me, AND I can implement these DOABLE changes in moderation.

So, that's what I've decided this week. And, I happen to be the kind of person that once having decided something, can and does stick to it.

I'm committed to my own well-Being. And that means, I give myself permission to no longer need this armour.

I do not need protecting.

I do not need to continue punishing myself (my body) for allowing it to be raped; for allowing it to be abused; for allowing it to be neglected; for allowing it to be bulimic or bullied for sooo very long; for allowing it to starve, and for allowing it to be hurt, over and over and over. I do not need to exert THIS kind of control.

I am allowed to LOVE me.

I am allowed to be WELL.

I am allowed to be HEALTHY.

I am allowed to be STRONG.

I am allowed to be ME, in all of my imperfect incarnations.

I am allowed to REST.

I am allowed to SAY NO.

I am allowed to GIVE freely.

I am allowed to ENGAGE IN LOVE.

I am allowed to HAVE A VOICE.

I am allowed to HAVE A BLOG, so I can SHARE.

And, I am allowed to FEEL SAFE, as I am.

I am allowed to be me.

May each of you love the YOU that you are. May each of you walk without armour. And, may each of you have no need for it.