Update

Had anaphylaxis yesterday, at a Church. That'll teach me to branch out and TRY to go somewhere. Two epi pens and drugs later...they let me home. The hospital is used to me now and trusted I could look after myself at home after the reaction.

So I'm on the usual post-reaction protocol and I'm feeling horrid.

The horrid nurse and I had a 'healing' moment yesterday...which I'll write about later when I'm home from seeing Dr. Vadas, my Toronto Immunologist and Canada's Systemic Mastocytosis doctor. Hopefully we can avoid a rebound on route to Toronto and IN his hospital. I reacted a bit last time I was there.

Anyway, I'll check in later. Toronto is a good three hours from here. Downtown Toronto is 4 or 5, depending on traffic.

Who Am I Kidding?

Just got home from a 4 day stint in the hospital.

Remind me NEVER to be an old person in a hospital...there's no dignity in being unable to do things for yourself and being cared for by people lacking compassion. Perhaps it's unfair of me to judge all nurses like the Mennonite one I'm referring to...but my ward roommate, at 94 years of age, having run a dairy farm her whole life, having bore 8 children who then went on to give her 25 grandchildren and 2 great-grandchildren, having been loved by ONE man for 56 years (and who still looks at her like it's the first time he's seeing her AND falling in love), deserved MORE than the treatment she was given.

Never underestimate the power of anaphylactic shock and allergic reactions to reek havoc upon one's life.

My poor husband, I ranted at him for two whole days about HOW he wasn't, isn't and will never be prepared to look after me and the high maintenance life I've become...I felt a sense of urgency to fix EVERYTHING right here, right now despite being housebound at my mother's house. My heart was beating like a fiend. I passed out, um, 4 times?? (which felt a LOT like I was suddenly walking through a huge wall of water and couldn't hold myself up anymore.) My tongue was fat, but not SO fat that I couldn't talk. My tongue tingled. My chest was tight. I convinced myself I was just being anxious and C-R-A-Z-Y.

My previous entry was written two days before my Mum called the hospital and asked them about HOW I was feeling. They said to come in...better to be safe than sorry and to use Epi if necessary. My eyes wouldn't stop tearing over, but I wasn't crying. I felt like a total mental case. Mum talked me into using the Epi....ahhhhhhhhh, INSTANT relief. Tongue went down, breathing no longer laboured, tightness in my throat better, no longer felt the need to vomit, eyes just dried right up and that massive sense of dread, dissipated. So, I was fine by the time I got to emergency. Just shakey from Epi. So, the doctor kept me in for 4 hours standard observation, said I was fine, and sent me home.

On route home, my tongue started tingling and itching again. We probably should've turned around. I didn't mention it. Mum noticed me itching. She panicked. The last thing I needed was my mother panicking too. So, I told her I was fine. Just a wee tingly tongue...I didn't mention the INSTANT sense of dread and fear of dying that was sweeping over me uncontrollably and me telling myself "everything is ok; I'm ok; I'm ok; I'm just C-R-A-Z-Y."

We got home. My children were sleeping soundly. Dad made me a cup of tea. We sat on the couch and chatted. I got up to go pee (read: MASSIVE SENSE OF PANIC OVERTAKING ME...MUST LEAVE THE ROOM!!!!), took about 3 steps from the couch and all of a sudden that wall of water hit me again and I woke up on the floor, with one frantic mother. You can be almost 40 and have a frantic mother. And apparently, can fall down, despite knowing how to walk and having done it successfully for over 39 years.

Mum wanted to take me back to the hospital. I opted for bed. (read: there's nothing going on...this is ALL in my head...) So, while Mum was convinced to go turn my bed down, I got up to go pee and brush my teeth, took about 6 steps and hot dang, THERE was that wall of water again!!! I woke up on the floor. Dad picking me up, said, "better not tell your mother, she'll panic." Agreed.

Off to bed I went. Armed with my arsenal of anti-histamines and a cell phone - in case I needed to call them at the other end of this 3000 sq. ft. bungalow - I fell into a panicked sleep. I dreamt all night about being surrounded by strangers who either didn't believe or didn't know about my 'allergies' or 'condition'. I woke up several times in total death crisis, short of breath, sweaty and fat tongue...all the physical stuff REAL BUT...I wasn't in death crisis, I was ok. I slept with the light on, with that small inner child of mine convinced somehow a light would make it all better. Afterall, NONE of this is real...I'm just a nutbar,...right?

Amazingly, I woke up Sunday morning feeling perfectly fine. NO physical symptoms at all and no panic.

Mum and Dad had their entire congregation coming over after their meeting on Sunday. I decided, since I felt fine, that I would make sure the house was spotless when they returned. I cleaned and cleaned and sweated and sweated and got light-headed and thought, when I'd not done a whole lot, "boy, I'm really out of shape or something, what's my problem?" I tried to push past the feeling and carry on and then I felt flushed & sick to my stomach. I stopped. But, the floors were all vacuumed, dishes all done, kitchen & bathrooms all swept and washed and, the house smelled nice.

Guests came, I mingled from the couch, and they left. Just as the last ones were leaving, I ventured from the couch, took a few steps and DANG, there was that blasted wall of water again! Melissa (a family friend who hadn't left yet) caught me mid-fall. I was sat down. I apologized for being such a klutz. I excused myself by saying that perhaps I hadn't eaten enough. I was given some food but it just burned in my gut going down, so I couldn't eat it.

Everyone left, and we all had a wee nap. Even my kids were tired. It was a quiet afternoon.

Got up, felt better. We decided to have a game of SORRY with the kids. So Mum, her friend Liane, myself and the chitlins sat down at the kitchen table for a game.

During the game, I felt myself 'flushing' and had this burning sensation in my gut. I asked for a drink of water. The flushing continued during the game, my arms felt itchy underneath the skin so I scratched, my tongue felt fat but not huge, it was tingly but not getting larger...Mum, Liane and my oldest daughter asked me numerous times if I was ok. "Yeah, I'm ok" I lied.

And then, the wall of water found me, seated at the table about to move my little yellow man into the safe-zone. I remember thinking, "oh shit" but Mum says what came out was, "Mum!" and the next thing I know I'm on the ground, Mum screaming at Dad for my Epi pen and to call 911. My girls were sobbing. Liane was rubbing my side and asking me if I was hurt anywhere? I found myself sobbing uncontrollably. Mum steadied the Epi on my thigh and asked Liane to hold my leg. There was NO WAY I could've given it to myself.

Once administered, a wave of "ok" washed over me and my body. The panic, that I hadn't realized until that moment of 'ok', completely disappeared, my throat let up, my tongue shrank, the flushing subsided, the itching vanished and I felt totally stupid for being on the floor. Liane continued to rub my side...I hadn't realized that she'd put me in recovery position. I was told to stay there. Mum was on the phone with 911.

The First Responder got to me first. He took my BP: 110/63 WITH Epinephrine. Low. He called it in. Pulse: blah blah blah. He remembered me. He'd been to see to me in January of this year when we'd called 911 too. He told me I was going to be ok and that the Paramedics were on scene now.

The Paramedics came in. They took my BP: 143/98. Going up. Epinephrine. To be expected. They asked what happened. Mum talked. Liane talked. I couldn't. I was sooooooooo tired, all of a sudden. They said I should go in. They got in position to have me sit up slowly. I did as I was told and got up slowly. As soon as my torso was vertical, that wall of water hit again. I woke up with them lifting me onto the stretcher.

As they loaded me into the ambulance, the First Responder told them to be careful because last time I had looked fine, said I was fine, and then gone downhill really fast and to be aware that I rebound. He also told them that I'm a Firefighter and First Responder back home. They gave me an acknowledging look while they hooked me up to ventolin/oxygen and put an IV in. They asked me to let them know the second I stopped feeling ok. Which was about 5 minutes later. They gave me another Epi shot and some other injection. Momentarily, my tongue stopped tingling.

Got to the hospital, and it was the same doctor as the night before. My vitals were fine, except for being tacky (that's medical-speak for 'beating fast'..."tachycardia"), which is to be expected with Epi. I was put in observation and my Mum was told I would be there all night. They weren't going to take any chances.

THen, I felt sick. Mum went to get something for me to puke in, as it was already in my mouth. Too much, too quick...I made a dash for the toilet nearby. I'm not totally stupid, I'd gone down a few times today already, so I sat on the floor to puke. All bile. Mum came back and rubbed my back. She had this dinky, kidney shaped thing for me to hurl in. THIS is a nurses' idea of puke bowl? Hmmmp.

Got up s-l-o-w-l-y, with Mum's help. Told her I was ok (I was) and took 2 steps out of the loo when, CRAP! THERE was that damned wall of water again. Woke up on the floor of the observation room. The nurses were taking my BP...which, of course was fine. But less than being 'tacky'. They told me I would sit up slowly and we'd get back to bed. Cool. I did as I was told, sat up slowly and as soon as I was vertical, DANG! THERE was that wall of water again. Me and the floor (which was nice and cool) were becoming good friends.

I have no idea how I got back into bed.

My tongue got tingly again. I told a nurse. But, was ignored. As usual.
My back hurt to breathe again. I told a nurse. But, was ignored. As usual.

So, feeling like that, I fell asleep. Mum left at some point. No idea when.

I woke up about 6:00 am, feeling GREAT!!! No tongue tingly, no back hurting. EXCELLENT...I can go home.

Wrong.

I got sick in the gut very shortly thereafter waking. And 'flushing'. I started hurling into the big silver bowl that magically appeared on my side table during slumber. And it was just bile and phlegm and mucus and spittle and it went on for hours. And no-one checked on me, and I was soooo tired of all of this, and being house-bound, and not being able to take my girls out anywhere, not being able to be the Mum I love being for them, not being with my husband, of being almost 40 and STILL at my Mum's house (7 months now) with my husband and our home an entire province away, and I'll admit...I FELT COMPLETELY SORRY FOR MYSELF!!!!!!! My insides got all itchy...like the entire underneath of my skin was rashed...only there was NOTHING on the skin. I seriously thought I couldn't deal with this ANYMORE. And I found myself sobbing. Actually sobbing...like a child who's lost her parent in a crowded place...only I'd lost me in the sea of life, and wasn't sure how to go about finding myself again.

A nurse came in and asked, "Dear, what's wrong?"

I couldn't answer. I shook my head and mumbled, "nothing, this is all in my head, I can't do this anymore..."

She left.

I, now, can't believe I had that many tears inside me. It just kept coming and coming. I have no idea how long I cried alone for. All of a sudden Dr. D was standing beside me.

"Fiona, what's wrong?" he asked, gently.

I couldn't answer him. My sobbing was too huge. He waited. And waited some more.

Then, he sat on the bed beside me, facing me and took one hand off the puke bowl and held my hand in his hands.

"I'm crazy" I wailed.

"No you're not," he reassured me.

"I must be. I can't do this anymore!!!" and then, I spewed...it all came a-rushin' out...more emotional vomit than the mucus in my silver bowl.

He listened attentively. And then he gently told me that it's not hard to understand why I'd be feeling THIS overwhelmed. He wanted to keep me in a few days, for some rest, to make sure I didn't rebound, to break this cycle of reaction/panic and he wanted to up my anti-depressants to twice the dosage I was on now. Boy, and I had thought I was on max dosage.

I didn't argue. I had nothing left. I was exhausted. I was spent. I was numb.

And so, I was admitted.

I spent the next few days between the daze of anti-histamines, horrid hospital food that I couldn't eat, sleeping, learning about the 94 year old woman in the bed next to me (and wondering HOW I could help her; and then when I felt better I just acted on it...I fed her, I helped her to the washroom, I tucked her in, I adjusted her bed/pillows, I rubbed her feet with peppermint foot lotion, I put music on for her, I sang to her, I put my Carmax on her dry, shredded & sore lips until they healed, I brushed her hair, I woke up in the night everytime she woke up & drizzled drops of water on her parched lips & even put the bed covers over her when she stumbled out of the toilet and got into the closest bed...mine, and slept in a chair for 3 hours because her dentures had fallen out of her mouth at some point during the night and were strewn over her own bed & covers) AND, I tried to come to terms with learning to identify an allergic reaction; identifying panic; identifying anxiety and learning to permit what IS, to be.

I guess they don't keep people in hospital without reason.

Is this the paradox of Systemic Mastocytosis, a life-threatening latex allergy or sheer anxiety attacks? Perhaps all three? Because whatever it is, NO-ONE in their right mind would CHOOSE this.

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.

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.