Reaction Recovery

Not sure how it happened. Didn't touch anything. Tongue just got tingling and then the right half of it swelled (looked VERY odd), started to hurt when I breathed (especially that spot in my right lung), my lymph nodes under the earlobes started hurting, got light-headed and dizzy upon standing (so had to sit or lie down) and...I began feeling that 'impending doom' feeling.

I got a lecture from my Immunologist this past Monday about not using Epi when this kind of thing starts. "You don't know how it's going to go" she always tells me. Hmmm, that's ok for you to say [I think] because it's not YOU the doctors and nurses look at like you're an idiot when you get to Emerg. and your vitals are good. Tongue will still be slightly fat, but not HUGE (and, let's face it, they have NO idea what my tongue looks like when it's happy) and how is it possible that pain in breathing is only in this ONE spot in your right lung???? They use the "c" word when they look at me. "Crazy."

Or at least, that's how I feel.

So here I am today, post-Benadryl, and the rest of the arsenal of medications that I have. I didn't use Epi...it's SUCH an ordeal using that stuff. Mind you, maybe I'd feel better right now if I had? I don't feel right. My tongue is still swollen and now, being Day 2 - it hurts. Solid food is impossible today. I tried. It won't go down. Who wants food anyway? I've been vomiting and/or on the loo with diahrrea for three days. AND, I'm not sick. Oh, and that spot in my right lung hurts like heck. I won't even get into the details of the excruciating knee pain.

My Immunologist wants a second opinion from another Oncologist/Hematologist and that bone marrow test done. She says SM NEEDS that bone marrow testing done. SO, I'm now waiting to hear of my impending appt. with another doctor. Oh joy.

Ever feel like a rat, running around on a wheel?

ugh.

The Sticks and Stones of Systemic Mastocytosis

I'm not much for labels. However, I guess this means some people I know will quit calling me a 'hypochondriac' or thinking I am. Instead, they can share their own personal involvement with a person with a RARE disorder/disease/dis-ease, and give their lives some semblance of purpose in knowing someone with something awful.

WHY don't people like to share GOOD NEWS???? No-one ever walks around saying, "Did you hear so and so has been healthy for the past forever?"; "Did you hear that so and so is totally in love with her husband and their marriage is wonderfully strong?"

Nope, people like to hear the shit. The misery. The sorrow.

So, my appointment the other day with the Oncologist (that I was so scared about) was bitter-sweet. There's good news and bad news. I doubt the good news will be shared. But I hope it will. The bad news is what it is. Can't do much about it. I hope there is more to talk about than my bad news.

Good News: The Oncologist didn't do a bone marrow test on me. She said it was pointless.

Bad News: The Oncologist said there was no question in her mind that my bone marrow would have excessive mast cell proliferation in it. My clinical history, combined with the funky tryptase blood and histamine in the 24 hour urine testing was enough to convince her that my Allergist (Western) was correct in her diagnosis of Systemic Mastocytosis.

Wait a minute...I thought we were 'ruling this out'????

Apparently not.

Apparently, we were 'confirming' the diagnosis.

Everything I've read since says bone marrow is essential for testing this disorder. The Oncologist I saw says in her experience bone marrow testing is painful and for this particular disorder/disease is unhelpful because it doesn't tell her WHERE the proliferation of Mast Cells are hanging out. My liver? My adrenals (my right adrenal gland hurts a lot of the time...WHY do doctors look at me like I'm from Mars when I tell them this? I KNOW where it is BECAUSE IT HURTS!!!!!! and it's atop my right kidney!!!!)? My Spleen? My Stomach? She says we'll have to wait for one or more of these organs to start malfunctioning to KNOW. In the meantime, she tells me, I have her sympathies as living with this illness is NO FUN.

Hmmm, no shit. I'm not really a big fan of anaphylaxis; allergic reactions; stomach pain; knee and long bone pain (for which I'm due to get surgery...better re-visit THIS procedure); headaches (which have actually improved since I started de-stressing); vomiting; diarrhea; depression/irritability; intense fatigue; brain fog, inability to control my own body temperature and often suffering with hypothermia, the shakes, and my favourite...blacking out/passing out...they call that 'syncope' in the medicine world. And then, there's...etc. "Etc" includes all those foods that make me puke or shit myself senseless...sometimes, sometimes all of the time and sometimes most of the time, but not always. "Etc" is how I feel when I wake up the heat of a summer's smog day in Northern Ontario and feel like crap before I've even rolled out of bed.

I guess it's been difficult watching me go to doctor, after doctor, after doctor for test after test after test and to NOT think I've been a hypochondriac. This past 5 years, I've gone down the Multiple Sclerosis road; the Parkinson Road; the Neurology road; the Mercury poisoning road; the Candida road; the Thyroid road, and a pile of other roads that make me tired just thinking about them. And then, my latex allergy took me to an Allergist who was thorough. And, here we are...having figured it aaaaaaaaaaaallllllll out.

Ahhh...well, now we have a diagnosis. The tumultuous road of hypochondria and insanity is over? The insanity might not be, but at least the name calling might be.

Oncology & possible Systemic Mastocytosis

I'm scared.

Tomorrow afternoon I have my first visit with an Oncologist. I'm going because my Allergist wants to rule out Systemic Mastocytosis/Mast Cell Disease (and perhaps even that insidious Leukemia.)

I don't have cancer. I think I could FEEL it, if I did.

However, we are ruling out these rare conditions because of the sheer number of anaphylactic/syncope/allergic reaction episodes that this body of mine has experienced in the past year.

I'm not scared of what might be, but rather of the testing itself. Bone marrow testing, apparently isn't very nice. Ok, apparently, despite local freezing, it's downright painful and awful. I have a fairly good threshold for pain. But, for some reason, THIS is terrifying me.

Elevated levels of histamine in my 24 hr urine sample and some funky tryptase levels, apparently, are cause for serious concern. I've tried to make light of this, but here I am, the night before...scared.

Why call it something else? Fear is fear.

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.