Just Another Weekend with S.M.

We went over to a friend's house on Friday night. She's been brilliant about de-latexing her home for me and I've flushed and not felt right a few times there but nothing that drugs hasn't taken care of. But on Friday night, I REALLY didn't feel right after being there for a few minutes. And, I didn't feel right after getting out of my husband's car. So what was it? Dunno. Anyway, I began flushing...which isn't a crisis in and of itself. I don't usually start panicking until it's mixed with other things, oh like, having trouble breathing and/or swelling tongue/throat. But, I just had the pain in my right lung that I get during 'reactions'. No gagging, no spluttering, no drama. But I didn't feel right.

Then, I needed to go pee. The loo is upstairs. So, I asked my husband if he'd mind helping me to the bathroom. I managed to navigate the kitchen. However, it was in the entrance to the living room that the room got all woozy and the immediate sensation of numbness in every part of my body, and zero control over my extremities hit. I remember thinking, "No!" and the next thing I know, I'm on the ground, left knee throbbing, husband behind my head telling me that I'm ok and my friend Lori, in front of me, holding my hands telling me that I'm ok.

The words, "I'm sorry" fell out of my mouth over and over again, as I tried to regain control of myself, the situation and...well, me.

I was told that I didn't need to be sorry.

My right knee was hurting like hell.

Together, they pulled me into a sitting position, and then when the world wasn't so woozy, they helped me back to the kitchen to a chair. I still needed to pee but I needed to sit still, more. I was totally flushed and rashed over my face and neck. My heart was racing, although Lori said it didn't seem to be to her when she felt my pulse. I took my meds: allerdryl, ranitidine, doxepin, reactine, prednisone, ventolin and waited. My right lung still hurt when I breathed in, and out but eased up after the ventolin. And we waited. All the friends gathered there for the gaming night looked on, with sympathetic glances and I felt like a total moron. The drugs kicked in eventually, and everything began to settle down. I still felt woozy, but didn't fall down. Mind you, I didn't get up except for one supervised and assisted trip to the washroom, and then out to the car to go home.

Saturday, I felt like I'd been run over by a truck.

Sunday, I awoke feeling the same way. Pounding head, rapid heartbeat intermittently, flushing and sick to my stomach. I slept until 9:30 am, went back to bed at 11:30 am and slept until 2pm. We went to the inlaws for an early supper. All was well until I went to whip the cream for dessert. During whipping, a gust of air popped up from the hand mixer and literally choked me on contact. And whammo, I couldn't get any air. Or much. I gagged, I coughed, I spluttered, I removed myself from the kitchen so as not to disturb the dinner table guests, and coughed my heart out. My husband found me, and grabbed my meds. We shoveled them in, with his saying, "Do I need to stab you?" Avoid Epi, at all costs, has become my new motto. Do not stab unless cannot breathe on own. Do not stab unless unconscious. Do not panic. "No", I gasped, "wait." And we waited. And it hurt to breathe. And my tongue tingled but didn't get bigger than it was. And I puked and puked that weird white foamy crap that only appears during an allergic reaction. And we waited. And then it all started to settle down...eventually. It still hurt to breathe, but I wasn't spluttering. I felt sick but wasn't puking. I felt woozy but wasn't falling down. We went home early. The drugs knock me out.

Monday, I woke up feeling like I'd been run over by a truck. No energy. Heavy. But alive and breathing. I got through kids lunches, breakfast, dressing, teeth, hair, snowsuits and out the door. I walked the dog for an hour outside in the cool air (I was dressed warmly) and took immense pleasure in being outside, in breathing, in Being. Came in, and called my Immunologist's office. I'm just about out of meds. Do I need to come down to Barrie to see him (2 hour drive) or can it be called in? I'm now on max dose of Doxepin, and not because I want to be. I've stayed out of the hospital but am still having reactions...WHY?

Monday afternoon, the Immunologist's office called me back. My ears must've been burning, I was told. I'd been discussed most of the morning. My test results, and patient file have arrived in their office from Winnipeg; from my previous Immunologist who suspects I have Systemic Mastocytosis and who's sent me to two Oncologists...one says I have it; the other says I don't. My Barrie Immunologist needed to see for himself the RAST, tryptase, catchecolomine, IgE testing for himself, and now that he's seen it all...he wants to send me to St. Michael's Hospital in Toronto to see Dr. Vas. (his name is too long for anyone to use it for real, apparently) who can do the c-kit mutation testing, and whatever else they are going to do. They will book me an appointment as soon as possible. In the meantime, stay on the meds, stay safe, don't risk unknown environments and avoid environments in which I've reacted; avoid 'reactive' foods; avoid latex at all costs and other possible chemical and environmental allergens.

I know this would all be doubly hard to take IF I hadn't been awarded long term disability benefits recently. I would be stressed beyond belief about getting back to NORMAL life and being a productive member of my household (because I've got some messed up notion that the housework; food; laundry; writing and house sorting that I do is somehow unvalued and unappreciated.) Once again, I need to remind myself that whatever NORMAL was; it isn't any longer...the parameters of NORMAL have shifted, and I need to do as the doctor tells me. So I am. Reluctantly.

New Year 2009

This is the day we feel we begin our resolutions – the promises of a changed us; the setting of goals for an improved me & marks the beginning of the next 364 days of effort to keep those promises.

I don’t normally set New Year resolutions, but this year I need to.

I HAVE to drop this additional 50lbs that’s currently hugging and weighing down my 5’2” frame. My BMI is ridiculous and I think I fall into the severely obese category. It’s odd that I don’t FEEL this huge…except when I want to run; except when I climb the stairs; except when I want to keep up my with children; except when I can’t fit into pants that fit me 6 months ago; except when I look in the mirror. I want to make excuses for it. I want to say things like:

I don’t eat THAT much.
I exercise.
I gained this when I got pregnant again, and it just won’t budge.
I’ve taken a LOT of steroids for my allergic reactions this year.
I’ve always been curvy.
I’ve always had a big bum.
I don’t have a sweet tooth.

And the list goes on.

I guess the truth is, I’ve been completely unrealistic about how I eat, why I eat, and what foods don’t agree with me. I often ingest, for example, dairy products that either give me an immediate headache, flatulence (that’s a fancy word for FART), diarrhea, constipation, blocked sinuses and tummy ache. HOW stupid can I be? I mean, if I was a cat and food did this to me, I just wouldn’t eat it. If I was a child and food did this to me, my parents wouldn’t give it to me and at some point I’d just stop eating it because I KNOW it’s going to hurt me in some way. WHY, as an adult, do I keep thinking I should eat dairy? All that calcium that’s supposedly in it? Do I believe the hype and propaganda of the Dairy Board who are in charge of Dairy advertising? I guess somewhere along the line, I have believed this stuff. And, I must like it. Otherwise I wouldn’t be drawn to the multiple types of cheese out there, cream, milk, cheese sauce, chocolate milk, Tim Horton’s French Vanilla Coffee, and there are a whole slew of foods out there that contain milk but aren’t milk…like bread. There was a time in history when bread contained nothing more than water, yeast & flour. Now we fill it with soy isolates, milk byproducts, and various grains and enriching vitamins (the ones that we strip from wheat in the first place.) We also enrich milk & milk products because we strip it of vital nutrients when we pasteurize it. So, I need to revise and adjust WHAT I’m eating. Ironically, I hated cheese and milk as a kid.

So, I will be blogging about my continued struggles with my ‘allergies’ and ‘weight’. Who would’ve thought my life would become about these two things? For now, though, they need to be. These are my struggles and I obviously will learn a thing or two from them. So, I need to be real about this all.

I’m overweight and it’s hurting me. Time to DO something about it.

I’m going to have to be careful about making excuses NOT to succeed though. Things like:

It’s winter and my treadmill is broken.
It’s too cold to go for a walk with the dog.
I’m too tired today to exercise (that’s ironic.)
I can’t afford to eat properly.
I’m too busy to take care of me.

Oh, and the list can go on…

But I’m not going to let it. I’ve dropped weight before with exercise and eating less. I’ve dropped weight before with Herbal Magic. Don’t think we can afford Herbal Magic’s high prices, so I’d best go back to DOING MORE and EATING LESS and differently.

I’m already on a restricted diet due to the allergy thing. No potatoes, No chocolate, No shellfish, No alcohol, No tomatoes, No nuts. Apparently these are high histamine-containing foods. I’ve been pretty good, although not perfect, about this stuff over the holidays. Last night, I had a Bailey’s on Ice and a banana/zambuca shooter and this morning I feel like I drank 6 bottles of wine and mixed it with Johhny Walker’s or something. I don’t feel so hot. I feel pretty grim actually. I can’t do that again. I’ve taken two Advil’s and they’ve barely taken the edge off. I hurt. More fool me.

So here goes. A new year and there lies the opportunity for an improved me. Mind you, that opportunity lies in every day, not just January the 1st 2009.

Doctors II

I wrote a few days ago, or so, about how great it is to live in Canada with our healthcare system, because it's better than having to fork out of pocket each visit. Then I grumbled about having to wait 4 months when I continue to have life-threatening reactions. Like the two reactions that I've had in the past 3 days. Obviously, I'm at home now and stable.

I spoke to the Immunologist's office this afternoon, and the secretary/nurse was quite annoyed that my doctor didn't indicate on my referral form that I've had this many anaphylactic reactions, let alone 2 this week. She said she needs to know if patients are urgent and obviously April is waaaaaay to long a wait to see Dr. F. So, I now have an appointment first thing in the morning. He's concerned.

I called their office because the two doctors that I've seen in Emergency in the past 3 days both said they wanted to refer to me an Immunologist right away. I told them I have a referral in April. This referral was made in November after another reaction and a 4 night, 3 day hospital stay. April 2009. Seemed forever away when all you want to do is find some answers and get, if possible, healthy. Both E.R. doctors told me to phone the Immunologist and see if I can get on a cancellation list. They were going to call but it's the weekend, and would be pointless. So, I phoned today. Sometimes, we need to proactive with our own healthcare.

Tomorrow, I will take with me a full year and half of chronology of my year with anaphylaxis, near death experiences, weight gain, inability to eat (ironic, I know), and photos that I have started taking during reactions so they can SEE what my tongue, skin, eyes, etc. look like when I'm reacting and when I'm not. I don't want to start this trip from the beginning, and an empty patient chart. I want to be well. I want to be functional. I want to live.

It's ponderous that my own doctor did not indicate on the referral the severity of my allergies/SM responses, etc. Ponderous.

CPP Long Term Disability and Latex Allergy

I received a phone call this morning, while in hospital. When I got home, I called back. Long Term Disability are awarding me disability benefits. This is amazing news, as I've been fighting since last January for them to understand the magnitude of this allergy. I have had zero income for the past 15 months, save for Sick Leave benefits for 15 weeks. They will pay me retroactively for the past 11 moths. Ironic, isn't it, that I was in hospital recovering from a reaction last night.

To any and all folks fighting with Disability or Social Security regarding latex allergy issues (when they become life-threatening and THIS severe), it's worth appealing, it's worth fighting and most of all, it's worth educating the decision makers about this deadly allergy.

IF I can help you in your fight, please contact me. I know this is a grim, stressful and dark road.

Losts

My fire guys are outside my window tonight. The red lights atop Truck 5 & 4, flash like the beacons they are, into the expanse of night on our road. They'll be on traffic control. Not usually necessary at this distance from scene out here in the country, but the crest of the hill and the new bridge make it a possible road danger, with a fire so close. Trucks 2 & 3, pumper and tanker, respectively, will be closer to my neighbour's house, or her barn, or her kennels. That's where I'd usually be, up beside the pumper, with Chief, taking his notes, responding to his constant requests for updates and wanting to know WHO he has and on what team to go in...that's me: taking care of Accountability, and making sure that no-one (and I mean NO-ONE) gets past my body with it's weighted down with Crew Tags clipboard, without tagging in. Except that for the past year, I've been unable to serve with my Crew.

Not quite sure HOW I missed the sirens wailing past our house. There's only a river, about 20 acres, and one home between their home and ours. Not only can I no longer drive over and see if my neighbour needs a hand with her daughter in the wheelchair, her two horses, her bitches about to have their Registered Labrador pups, their chickens and their beloved house dogs BUT I also can't help put out the fire. I love to put out fires.

At first, I really liked being one of only two women in our Fire Hall. But soon, it didn't matter that I was a girl...on the Fire Dept., you are never a girl, you are always (along with everyone else) a Firefighter. Nancy and I joined the same night, in November 5, years ago. Naturally, we grew close. And, as is natural with a Fire Crew, we all grew close. You don't clean up accidents on the highway, pull people from boating wreckages, save a drowning victims life, try to rescue someone and they become a recovery, try to save your neighbour's grandfather with CPR and Defribrilation, put out bush, vehicle, train, teenage drinking sites & structure fires without getting close.

So, when I got put on light duty just over a year and half ago, I was frustrated but ok with it because I became a scene-Scribe. Apparently, I made legible & very accurate accounts of fire or rescue scene's as they played out. My Drama writing skills earned through my degree in Theatre appear to have come in handy for something. Even doing Accountabilty, I still felt useful. Now, I am watching the red lights flash around, and around, and I ache to be out there in the snow with them. I ache to be part of the problem solving and the elevated levels of cortisol that fire up when you throw yourself into this kind of situation. Yes, it's possible to create "fight or flight" situations for yourself. Join the volunteer Fire Dept. in your small town and find out for yourself. They'll even throw in a uniform and training for you...seriously, it's amazing. Not necessarily healthy for you, but amazing. (OH, and training at the Ontario Fire College...absolutely BRILLIANT!!!)

I realize not everyone wants to be a Fire Fighter. And I never did, until I was working in the Municipal office and the 'tones' would go off, and a bunch of guys from the office would stop whatever they were doing and run out the door. The whole time they were gone, I was consumed with what they were doing. Then they'd return later, with either elation or melancholy present on their faces. I was struck by how seldom anything in between appeared on those faces. I started asking questions about the 'calls'..."did it go ok?"; "anyone hurt?"; and if it went well, you'd get lots of details; if it didn't go well, you'd get a shake of the head. Depending on who you were talking with, the melancholy would last anywhere from an hour or so, to days. I didn't understand the magnitude of the divide between the two fully, until I did my first rescue/recovery/death. It took me over a week to recover...and I talked to someone. I was offered counselling. I almost took it but then a peace washed over me and there was light back in my heart. The peace washed over me as we CPR'd a man to life again. OK...this IS worth it. Volunteer Fire Departments aren't all about fires, the Jaws of Life, and blowing off hose. Although, blowing off hose is seriously great fun. It's serious stuff too, and needs to be handled responsibly, but, ok, it's fun.

My latex allergy got bigger than me.

While efforts were made to minimize latex in the our fire hall, and our vehicles, latex reactions were behind my no longer being able to Fire Fight. I was crushed. It took me over 6 months to return my red jumpsuit, my boots, my goggles and my pager. I had done the responsible thing as soon as I could no longer drive (license revoked to blackouts that are now attributed to drops in blood pressure during allergic reactions) and given my radio to a new guy who was looking to be a serious keep for our District. Turns out my instinct was a good one, and he's using that radio to this day and responding to most calls. That makes me proud and happy. But sad. When my District Chief gave me one of the halls new tshirts, I burst into tears. I felt wrong taking a shirt for something I was no longer doing. He hugged me and told me, "once a Fire Fighter, always a Fire Fighter. You'll always be part of our team whether you're on scene or off. You've been there, you've done what you could and now you have to let us do our bit. But you're one of us. And when they figure out how to help you, you'll do it again. Until then, you gotta stay safe." He asked me to stop crying because he thought he would. We laughed and the tears subsided. That was just a couple of months ago.

It's been over 4 hours and the lights are still out there. Smudged between the moisture on my farmhouse windows and my tired eyes, the red hues flicker as they rotate. I hope my neighbour's ok. I hope her family and animals are ok. Normally I would know what is needed to help in the aftermath, but I'm out of the loop. I wouldn't have known they were out there if I hadn't been on the phone-tree in the neighbourhood. We might be acres apart, but we all KNOW what's going down next door. And it's important that we are there for each other as neighbours. I will have to find out from someone else if there is anything we can offer from our home and land to help our neighbours. Until then, my guys are out there, and I'm in here. Just feels wrong.

I know it's important that we count our blessings with this allergy, especially when it gets to life-threatening proportions. Being human, I find myself trying to count those blessings. But, am overwhelmed by the sense of loss I feel in not being able to help my neighbour in her hour of need. It's hard thinking about what I've lost, to add this to my List of Losts. Some people call them "Losses" but that seems so, permanent. I like to think of them as Losts because there is the underlying implication that somehow, someday & somewhere, they might be Founds. So until we have a cure, and until we learn how to prevent this allergy from getting any worse, I need to view the changes in my 'normal' life as Losts, not Losses. There's hope in Losts.

I hope my neighbour hasn't got a long list of Losses this evening too. I hope we reached her in time, and I hoped we helped.