Another Bout of Days

Woke up today still itchy. Got these red spots where I was all blotchy yesterday. They look like the red spots that have appeared on my face, that I keep saying are the residue of reaction and NOT pimples. They've lingered on my face for weeks now, and don't appear to be going away. Now I have two on my chest that are unbearably itchy today.

Tongue is still fat, but not so I can't eat or talk. Just sore.

That spot in my lung feels better with the ventolin today.

The flushing has been unreal today, and I was dealing with it during the night too. I've been awake since 3 am. It's now 1:30 pm. However, once all the drugs kicked in a few hours ago the flushing subsided. Of course, I'm ready to fall over.

My stomach has settled down. Thank goodness for small relief.

Got the itchy's around my eyes though and in my nose...and I don't have a cold.

I'm not moaning so much as documenting.

This makes this Day 3 of not feeling right.

Yesterday at the Xmas party I started reacting badly. I hadn't touched anything, other than our camera and some food (I arrived early to help set up.) Perhaps it was the 300 rubber soled shoes in the building? Or some baby toy? Or a rubber band pinged off of something, somewhere in the building? I don't know...but anyone that knows me noticed me reacting. I remained calm, and said I should maybe exit the premise. Friends told me that they'd find my husband and let him know. Another friend offered to drive me anywhere I needed to go. Other's said they'd watch my children and make sure they took photo's when Santa showed up. Sigh, another event that my body couldn't handle...

So I left for the comfort of a friends' house (Lori) who lives nearby in the Village. Thank god she didn't blow the balloons up for her daughter's birthday in the kitchen, which is where I hung out by myself (stupid, in hindsight) in full on anxiety mode. I almost used Epi because I seriously thought the sense of doom was never going to lift and the swelling wasn't going to stop and the flushing, itching and nausea/vomiting wouldn't end. BUT I reminded myself that I still had a good airway, and despite laboured breathing, I was breathing. I trusted that the onslaught of meds would work...and 100mg of Benadryl and Prednisone, as well as all other anti-histimines later, and...relief finally rolled over me like a plush fleece blanket. I don't normally take such high doses of Benadryl and Prednisone but 50 mg's wasn't doing anything. My Immunologist has given me permission to use that much and see. Although, her take is use Epi FIRST and THEN that stuff...yeah, ok, but the drama is too much and I just wanted to wait and see...was it going to be ok?

It was. Eventually.

My husband reminds me this morning not to fuck about. He says the last time I felt this way (about a month ago), I went 4 days like this...up and down...and then it only took the whiff of a newspaper to send me into full anaphylaxis and a three day stay in hospital, in and out of 'reactions'. So, I'm in lockdown. Can't leave the house. Take the meds as directed, keep the cells in this body suppressed so that I don't go into full anaphylaxis, and try to relax.

This is so NOT where I want my life to be. However, as my doctor and husband remind me...there's not much we can do about it right now. WHAT exactly am I waiting for???? That's what I feel like...WHAT am I waiting for? Am I waiting for myself to accept fully that this is life? Or am I waiting for some miracle to pull me out of this funk? Guess I'm an eternal optimist, so I'm opting for the second and hoping that my hope isn't poor laden and that I'm not being a total moron for wanting there to be another answer, or for there to be a solution when there is none. Something; anything. I HAVE to believe this will get better. Whatever it is.

Insensitive Shoppers

It's been difficult trying to make sense of life.

Granted, I'm not the only person encumbered with this undertaking.

However, there is a marked sense of insensitivity in people when you finally decide to leave the microcosm of your home, and go mingle with 'the rest of the world' with 3 (three) surgical masks on - just in case there are airborne latex or chemical or other potentially life-threatening allergens out there. I want to get a t-shirt that says, "I'm NOT a Weirdo, I have life-threatening Allergies!!!"

Life is about risks, non? Imagine for a moment taking the risk of DYING by doing the most mundane tasks, things that the everyday folks take for granted...like shopping, like going to the bank, like going into a school, like taking public transport, like walking down the street...you can forget riding a bike (unless you have an super old one like mine with plastic, not fancy rubber-gripped handle bars.) The world is VERY different when you have life-threatening allergies.

I think what I miss most is my ability to be spontaneous. My get up and go hasn't gotten up and gone so much as been locked up for its own good. I'm involuntarily agoraphobic.

So, when I do venture out...WHY do people HAVE to stare??? Yesterday, in Value Village, a woman gave me a sympathetic smile. I smiled back and realized that she couldn't actually see me returning the warmth of that smile, so I had to say to her, "I'm really smiling behind this mask." She gave me an acknowledging wince of pity. OMG...I'm being pitied. Children have less barriers, "Mommy, what's wrong with that lady??" or "Mommy, that lady looks weird." Yep kid...that's me...the weirdo. I took the chance of going out somewhere, Epi-pens on hand - and, for all my hopes, I was glanced at like a weirdo, pointed at, spoken about, and I felt sorry for my children who's mother is the 'weirdo'. Thank goodness they are still at the age of not noticing this all, and perhaps, just perhaps, I'm being overly sensitive but I have to ask myself if it's worth it? My children won't always be oblivious. At what point will I become an embarrassment?

I did get some capri's, a few needed t-shirts and a fuzzy housecoat but was it worth the sweat from the heat underneath the masks, the fogging up of my glasses with the masks on, and the side-ways glances & whispers?

There are waaaaaaaaay worse ways of being marginalized. I am aware of this. However, life has handed me this really interesting, sucky but interesting, pile of lemons and I am ardently trying to figure out HOW to make some kick-ass lemonade out of them.

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.