All That Ick Is Gone...

Have been home a couple of days now, and am feeling unbelievably great post hysterectomy. Not sure now what I was ever worried about! Staff and Doctors at Orillia Soldier's Memorial Hospital were AMAZING, and they took great care of me. Precautions were taken due to Masto and my latex allergy, and I only had two anaphylactic reactions the day following surgery. Turns out it was my reacting, we think, to the antibiotic, Cephalax (I think that's how you spell it) that I've been given to ward off infection.

Now we know why I hurt so much.

I'm in less pain now, healing, than I've been in for about 7 years. Turns out I had pelvic congestive disease (not to be confused with pelvic inflammatory disease, which is an STD) which causes severe varicose veins in the uterus and pooling of blood; adenomyosis which is enlarged uterus where the endometrium fuses with uterus muscle and becomes enlarged because it sort of bleeds into itself; and then my cervix was hardened from all that weight and the size of uterus pushing down on it that it had prolapsed half way down my vaginal canal. My uterus was the size it would be if I was between 4 and 5 months pregnant and weighed about 4lbs. Doc says I would've hemorrhaged by about Xmas and quite possibly have died. Glad we got this done now. phewwwwwwwwww. Uterus is being biopsied. It'll be interesting to see if there were any Mast Cells lurking in there (and maybe causing the enlargement?)

Am on strict rest (even though I feel great), as not only had the uterus and cervix removed but he had to repair the ligaments and muscles that were holding the cervix in place under the uterus. They were stretched and badly damaged.

Mum is here for two weeks as I'm not allowed to do anything for 6 weeks.

Crazy...not sure how I'll manage that! But have to.

I would like to thank each and every one of you for your love, warmth, prayers, thoughts, light and grooviness. I felt completely loved and full of comfort going into the actual surgery because of you. Namaste.

This Week

This week has been a good week, overall. Imagine that...do as your Doctor tells you & use the knowledge that you've been learning in your quest to be healthy: avoid triggers and if that means being house-bound, so be it; don't eat foods on the lists (histamine containing and latex cross over concomittant); sleep; drink water; exercise in moderation (so as not to cause a reaction); find things to be joyful about and embrace those things; love fully, passionately and without regret. Be what you are, now. As you are. Stop trying to be EVERYTHING to EVERYONE. Stop setting yourself up for failure, but continue to dream of what you CAN do...

The strings on my yoga pants are longer today. My breasts look bigger to me, because the flub underneath them appears to be shrinking.

I've given up trying to make the few foods I can have, taste good. So, it's easier to pick at small bits of salmon, kamut bread with blueberry or blackberry or raspberry jam (raspberries are on the 'reactive' list but they've NEVER hurt me...), sauteed onions and garlic, squash, peas, green beans. Odd bit of chicken. Just to nourish myself.

What I am doing, is cooking for my family. Portioned for 3. Served with love. Prepared with love, gratitude and the desire to nourish the bodies of those I love.

I'm grateful for my Motherinlaw, who brings over baked treats. This way, I don't have torture myself with making them. Things like Brownies and cookies and muffins are difficult to make without wanting to 'cheat'. And 'cheating' makes my body hurt.

I should pick up some kamut and sourgham flour. These don't hurt me. I tried baking cookies with Quinoa and they tasted bitter and unrepentant. Even spiced with ginger, they were horrid.

I want to feel THIS good everyday. And my wish is for each of you to feel this good too. xoxoxo

Mastocytosis or Severe Latex Allergy combined with Catemenial Anaphylaxis?

Saw Dr. Vadas on Monday.

Since my bone marrow biopsy came back 'normal' (once again an abundance of eosinophils; which I've had with both bmb's and all three live blood analysis' I've done with the Homeopath/Naturopath) he wants to put Mastocytosis on the shelf for a few weeks and forget about it as a possible diagnosis. I am, however, to stay on the medications for it because apparently I need all the help I can get.

He's taking a more indepth look at the whole latex thing. Doing an IgE mediated blood test for latex. As well, we picked 5 of the foods I have trouble with or have had trouble with, from the now extensive list of possible cross-reactive latex foods and we're doing blood tests for those. For the next 6 weeks I am to avoid these foods, plants and other possible reactants, that are on the latex cross over lists, as well as stay on the low histamine diet. Dr. Vadas said nicely, "I guess you'll be eating a lot of meat." I didn't have the heart to tell him that my gut can't tolerate pork & beef, and sometimes has trouble with chicken, turkey, etc. My husband made a joke about me eating lots of tofu...only trouble is, SOY is on the list of DO NOT EATS. So, today I went to get the blood tests (cost us $120.00 because they aren't 'normal' tests.)

It's easier to list what I CAN eat, rather than what I can't. So far, I've got:

oats
chicken (when I can tolerate it)
salmon (never have a problem with it)
raspberries
blueberries
rice
lemon

That's it. I'm likely to lose some of this bloody weight on a diet like this. Gonna have to be careful not to get constipated. Not sure if any of you fluctuate between severe constipation and diahrea but I do. No fun. Rarely is my gut balanced these days. Hasn't been for about 3 years now. And getting worse. It's weird how you get used to it.

I AM going to say this. I've been trying to cut out wheat from my diet for the past two weeks, since seeing my family GP, who can't believe that we haven't tested me for Celiac yet. His suggestion that I try it. When I don't eat it, it seems, my bones don't hurt half as much. It's incredible really. Nor do I bloat half as bad. It turns out that wheat is on the list of latex-cross over reactive foods...I didn't know that. I thought I had the list but it turns out it is WAAAAAAAAAAAAAAAAAAAAAY more extensive than I thought or had researched. Dr. Vadas says there are new lists. And, this is one of those cases where self-education is good for the patient.

Additionally, connected or not?, I went for the visual field test at my Optometrist's office today. She needed this last test to finalize the report for my GP and Dr. Vadas. Seems my left optic nerve has NOT repaired itself the way that we had all hoped it would over the past 3 years, and is worse. Love that question: "Fiona, have you been tested for MS?" I have. They found very small lesions on my brain that they said were of no consequence unless they get bigger. I sense another trip to Sudbury and an MRI sometime soon...

Hysterectomy is on hold. Dr. Vadas needs to sign off on the OK for it, due to the whole anaphylaxis thing. He says unless I have cancer in my uterus, NO WAY. Apparently, I'm too high risk and whatever pain I am in will have to stay for now. We have to get a handle on the anaphylaxis first. That's our first priority. This led to the discussion of Catemenial Anaphylaxis. This funky phrase basically means anaphylaxis during your female cycle. Ergo, more reactions during ovulation and menstruation...welcome to my world. This could be Masto too though.

So...sort of feel like I'm in the midst of a HUGE guessing game, OH WAIT, I AM!!!!! I'm past being frustrated. I realize now the importance of 'elimination' in this game, and my body needs me to remain calm, focused and as happy & healthy as I can be. This includes resting on those days I just can't do anything. Like yesterday. I'm exhausted today too, and haven't done much. And, this means being kind to myself.

No more telling myself that I'm a loser; that I'm useless; that I'm worthless; that I'm 'fine' and to just get on with it; that I've somehow 'created' this illness/whatever it is in myself.; and, no more hating myself for where I've ended up. What I must do is to treat myself with kindness and care. If I loved myself half as much as I love my children, I might feel as secure, loved, worthwhile, happy and healthy as they do. I can do this much for me.

shocking

am reeling from 3 days of shocking, in and out of hospital, 4 epi pens and almost 10 puffs of epi spray and all the usual meds. will write more when I'm stronger. remnants of this systemic response are hanging out in my gut...still can't eat. On the plus side, I've dropped 11 pounds according to my scale. not exactly the way to do it.

am weak.

Perfect.

Had you known me in University, when I was actively pursuing a Theatre Degree, you would know that I was on a quest for perfection. I was determined to leave this planet after giving my best. Personal perfection, intellectual perfection, creative perfection, carnal perfection, and worldly perfection drove me. Even when I succeeded and was commended by external stimuli/people/teachers/lovers/friends/family, I never permitted myself to listen to that praise. I never wanted to stay there. I moved forward as quickly and swiftly as I could, never stopping long enough to take in what good I had created. This same quest in High School pushed me. I was, insanely, on this same quest in my first, and only, year at Senior School in England.. .I was 11 going on 12. There was no sign of this quest leaving me when I joined the Fire Dept., when we moved to the countryside...I was in my 30's. Or had my babies. Or got married. Or continued taking classes. Or worked overseas...in my 20's. I worked hard. I played hard. I thought hard. I rested hard. I ate hard. I dotted all my "i"s and crossed all my "t"s. Then filed them alphanumericalbetically. Then updated my file list. I have no trouble finding things. Perfect.

Having said all that, my desk has always been a mess. A disaster zone. Chaos. Still is. Um, not perfect.

My friend Drea says that I've "...been through fucking hell this past year..."

My Mum tells me that Jehovah has given me this illness because my shoulders are big enough to carry it.

My Father tells me he's worried sick about me. And nearly always interjects that it's Ontario that is making me sick, because this province is toxic. You can't live between Toronto ('Smogville'), Hamilton ('Steel Town') and Sudbury ('the land of Nickels') and not have the air and water affect you. The natural resources are sick. Ergo, I'm sick.

My Husband tells me that I need to make the necessary adjustments to relearn to live my life.

My Immunologist tells me that I need to make the necessary adjustments to relearn to live my life.

Drea points out that I no longer have to work, live on 128 acres of land in the middle of nowhere, can take my kids swimming for free in the lake ANY time I want to (weather permitting, of course), that I have all day to myself, that I have a man that loves me, two gorgeous kids, family and friends that love me and whom I love, and don't have to answer to anyone. Aside from the whole illness thing, she quips, your life is perfect. Drea does intellectual stand-up comedy: Spoken Word. She's brilliant at it. I'm a fan. Perfect.

A different person would take the time that I now have, sit on their arse on the couch and watch tv all day, while nibbling every so often and going for a pee. I have a great deal of trouble doing this, depsite wanting to sometimes. That drive for perfection speaks to me really loud most of the time. "WASTING TIME!!!!!! DO SOMETHING!!!!!! USE YOUR TIME WISELY!!!!!!!!", etc. Some of you may be familiar with the "etc.s" too.

I'm not sure where this drive comes from.

What I do know is that sitting too long on one side of the fence isn't good for you. Nor is the polar opposite. Seems to me, that some sort of balance needs to be present.

You can't be this driven and healthy too. Ergo I'm not.

I'm not saying that the insanity that I've called my life for the best part of the past 20 years is responsible for reaping some serious physical and emotional side-effects. But it can't have helped.

My husband has said to me on more than one occaision, "Nothing is ever good enough for you. You're never happy." In various tones and circumstances. THIS is usually what our arguments are about. When we have them, which, thankfully, isn't very often, it usually boils down to that. Once every 2 or 3 years I am given a sobering dose of someone else's reality and told that nothing he ever does for me is good enough. Until this past year. He's easily said it to me 7 times. In one year! I can't be responsible for why he's driven to have a woman in his life that pushes these buttons for him but I can be responsible for not being that person, because it's not healthy or balanced or ok. And, I can be responsible for not pushing myself to the brink of death 'proving' myself to the world. Quite frankly, it's not that interesting. Nor am I. Who cares if I prove anything? No-one but me. Perhaps if I give myself permission to relax and appreciate things as they are, I can enjoy the fruits of my labour when I take on projects or challenges...instead of rushing and pushing through them so they are over and I move onto the next thing. OR WORSE, I throw myself so hard at something, that I burn out and never finish it. How many unfinished projects or 'things' do we human beings have?? Don't get me started on the guilt associated with not finishing things...lol.

What has happened is, despite my new limitations, that I have continued to try and push forward, in the same way that's always worked for me before. Really hard. And am no longer reaching my destinations...not even close. Ergo, there is a sense of failure.

This sense of failure is all too familiar to me. It's not just reared its head in the past year or so. Systemic Mastocytosis and a life threatening latex allergy haven't created this. I can't remember a day as a child, or teen, or young adult or adult that I didn't feel like a total failure. While every one was sharing accolades with me, praising and enjoying my work, stories, food, hospitality, singing, teaching, listening, sharing, theatre, children, marriage, fire department, yoga, running, fraternizing, whatever...I was sure it was never good enough, ok, or worthwhile. Or that I was. (The guilt over not receiving the love, praise and offerings of those people kind enough to share their time with me is another discussion altogether...) I never savoured a moment of perfection, in those moments being perfect as they were.

If I may be permitted to observe my own Self for a moment...this is pretty sad. Not to mention, unecessary.

It's even sadder that it's taken my world becoming infinately smaller, through illness, for my appreciation and love of my Self to begin growing. That might sound a bit new agey, but there isn't really another way to explain it.

Tonight, despite the downpour soaking my farm and my hair, I looked around me and was aware that my life is already perfect. I just haven't taken the time to "smell the roses" or Be right where I am, as I am. All this time I've spent searching, driving, proving, and trying to be happy, I just needed to BE happy. "Do or not do, there is no try."...says Yoda. It really IS as simple as a CHOICE. And I haven't always chosen this.

The need to rush to the next minute or moment or thing to do went "POOF!" and here I am, findng that time (an illusion) has slowed right down to a pace that feels good. Perfect. Why didn't I let this perception in, years ago? Hmmm, chances are good that I wouldn't have recognized it. How would I know NOT to speak unkindly to myself, if I had no idea that I was speaking unkindly to myself (and possibly others?) Thank God we have the ability to learn.

So that list of unrealistic expectations that I have of my Self needs to be rewritten or thrown out. Imperfect perfection is what I am, and that feels good. (Do I get to thank Adam and Eve here?)

If anaphylaxis, Systemic Mastocytosis and freaked out cells have brought me to this place, then I am grateful for it. I wouldn't wish it on anyone. And, I wish I didn't react to the world we live in the way that I am BUT, I've arrived at "I'm alright" contentment...so thanks.

Complacent, Bothered and Bewildered...

My friend Tara's comments about my 'illness' being a mental matter have taken up all together too much time in my mind, mullings and memory. I shouldn't permit this. So I will thank her for providing me the opportunity to re-examine my feelings and thoughts about HAVING an 'illness'.

What I did become aware of this week was the unmistakable pain present in my ascending colon region. I have pain in the front AND in the back of this area of my anatomy. My Hematologist gave me a serious examination the other day and asked me if my gall bladder has ever been looked at? Scanned? Issues? No, no, no. The pain there is UNREAL. On par with the same kind of pain I had when my appendix went (the week before our wedding.) Brings tears to the eyes involuntarily when touched...and when I rest my arms on my gut...and when my children sit on my lap (don't want to be touched there.) Wonder what THAT's all about? Another thing to note. This is where my gut pain resides.

So, the other day at St. Michael's hospital, I met my new Hematologist. She's super nice, super pretty and super thorough. I thought I was going to have a bone marrow biopsy. It's been pushed to April 29th now. My doctor was concerned about doing a bmb without freezing. She called it 'inhumane'. Her and my Immunologist want my upcoming hysterectomy moved to their hospital from the much smaller small town hospital I was supposed to have this done at. They say that they can handle potential complications there much better than this other hospital because they understand the nature of my allergies/mastocytosis. My new family doctor agrees too. I met him on Friday. He wants to see me once a month to stay on top of what's going on. My Immunologist is not going to be happy that I had another reaction on Friday night. And I was having SUCH a great day.

I hope I don't become complacent about this whole health thing. But it's hard to listen to the broken record that's become your life with a life threatening latex allergy and this whole mastocytosis picture.

Feeling Off

Not feeling so hot today. That'll teach me to have a sip of alcohol. I've been flushing on and off since (two nights ago), stomach distress and today, I feel like someone has taken a mallet to my body as well as sucked the life right out of me. Obviously a sip is too much.

Add to this that I've started on Ketotifen. Have to start at low dose, and increase gradually over a few days. So, yesterday afternoon was the first step up...so, not sure if my malaise/fatigue is due to the increase. Hopefully, it will even out soon. Ketotifen is a mast cell stabilizer and an H1 histamine inhibitor. I read yesterday, on Masto Mama's website, that her little guy is in need of this medication but that it's not available in the USA yet. I spent a good chunk of my night last night trying to think of ways to get it to her. Haven't come up with anything solid yet. She asks if anyone knows of good sources in the USA, to please let her know. Her blog link is in the top right hand corner of this page.

Also, my friend Dawn, in the USA, has been denied her social security claim. This is a huge blow to the little bit of hope that we Masto folks need to have. IF anyone is USA side, or even Canadian side, and has been awarded either Social Security or CPP Long Term Disability based on your Mastocytosis case, PLEASE email me: gypsyprincessa@hotmail.com, so we can help Dawn. I would like to put together a comprehensive list of arguments as to WHY this is vital, needed, deserved and necessary. Please share your story with me. Whoever is adjudicating her case obviously has NO IDEA what it's like living like this. I went through similar trials with my latex allergy claim (before we knew about Mastocytosis...either way, EVERY doctor I have encountered agrees that I need to be on Disability.) Dawn has tried every which way to remain 'functional' but this disease has got her beaten, and now the security system that should be there to protect her in such situations, isn't. I would say her Masto is far more aggressive than mine, and mine is bad.

Anyway, feeling like this means that I need to take it easy today. Maybe moving ALL the living room furniture, piano and tables around yesterday, and cleaning up the contractor's drywall carnage was a bad idea? The living room looks great though. The window guy should be by today to finish up framing out and trimming the three windows and door. It's a different world in my living room. However, after my bath (in a tote box...long story), I will be snuggled down in the family room with my Adult Education Theory books, putting together my next assignment. And napping.

For those living with Masto., or those loving those with Masto., and those living with deadly allergies, my thoughts and warm are with you today. Be safe out there...

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.

Doctors

I feel blessed to live in Canada, where we don't have to fork out of pocket hundreds of dollars to see a doctor for a few minutes. If we did, we might view the moments that we spend IN the doctor's office with a bit more scrutiny. We might find ourselves fighting a bit harder so that we don't leave the office feeling like, "well, THAT was a waste of time..." So, this post is bitter-sweet. On the one hand, I am utterly grateful for living in this country; on the other, I don't understand WHAT takes so freaking long!?!?!?

At the beginning of November, I had a pretty bad 'systemic' reaction (to who knows what?) after being exposed to some latex earlier in the week. Two Epi's, ambulance and a 3 day stint in the local hospital, more steroids than I care to remember as well as rebound reactions and my doctor (who I really like & appreciate) tells me that she thinks I need to see an Immunologist closer to home. She knows one in Barrie, ON and will have me referred there. My current Immunologist is in Winnipeg, where (in my opinion) she's been both careless AND thorough (odd, I know...) However, Winnipeg is a two and half day drive or a 3 hour plane ride IF you can take a plane, which I cannot.

In the middle of November, I called my doctor's office to see where this 'referral' was. "On her desk" is what her secretary told me; along with the letter that I drafted (at my doctor's request) stating that I am available for work ONLY if the environment is latex-free; the work is latex-free and the building is latex-free; and can be guaranteed.

At the end of November, I rang again...seeking the same thing. And was told the same thing. At which point, I kinda lost my cool, found myself seething, immediately flushing and having a 'reaction' (hmmm, guess stress IS a trigger!...I had, until recently denied this.) I asked the secretary IF she, or my doctor could fathom, even for a millisecond WHAT IT MUST BE LIKE being almost totally housebound, unable to work, unable to function in life, unable to move forward and to be sitting here in your home WAITING for life to start!?!!?!??!!? I got the rote, "I know this must be difficult for you, Fiona"...yaddah, yaddah, yaddah. Yep, you all know how hard it is for me right up until there is something YOU can do to alleviate this situation. Ugh. During this conversation I was able, at least, to get the name and number of the Immunologist I would be going to see. So, being pro-active, I rang, left a message and requested an appointment given that the referral was now going to be with them.

Two days later, I followed up. Nope, the referral and my letter was still "on her desk". I asked WHAT my doctor might be doing with my file, other than maybe hoping that I would go away? "She's reviewing the file, that's all I can tell you," her secretary replied. "THAT file," I shuddered, "is ME; I'm not a flaming file OR a piece of paper." "I know this must be difficult for you Fiona, let me see what I can do," she replied.

It's now the middle of December, and today I got my referral appointment with the Immunologist. April 20th 2009. So, I've been waiting over a month, so that I can wait ANOTHER 4 months. I am MORE than slightly irked, because it's not like I am dealing with some digestive discomfort that kind of puts a damper on my ability to have Tapas or go to Potlucks. I can't leave my HOUSE!!!!!!!! And when I do, I wear masks, and gloves and am ANYTHING but conspicuous.

It occurred to me, while I was talking myself out of over-reacting, this evening, and taking some Benadryl for the immediate flushing, tongue swelling and need to vomit that...whoa, stress REALLY IS a trigger. How ironic that the very medical system that is supposed to be HELPING me is CAUSING me to 'trigger'. It then occurred to me that this appointment in April will be one of those appointments (unless I do something about it) where I show up, and the Doctor has an empty file, looks at me, asks me some questions and I find myself repeating my WHOLE last year and half of ordeals (this time frame being the most crucial and recent of 'episodes') and that, NO, he has no medical records from my GP/MD OR the Immunologist I've been dealing with in Winnipeg for over a year. THEN, he'll likely tell me that he'll have to request this information. WHY ISN'T THIS FOUR MONTHS BEING USED TO TRANSFER MY FILES/INFORMATION/TEST RESULTS, etc???? I know this is how this will go (unless I handle it...which I will) because I've been down this flaming road already, with Immunologists, Oncologists, Pathologists and Hematologists!!!! I keep repeating myself to ALL these doctors, when really, they should be speaking to each other ABOUT me!!! What the hell are we paying them for!??!?!!?!? (Or rather, the Government, on our behalf.) Seems to me, some medical auditing might shed some light...but that isn't going to happen in a medical system already burdened.

I am trying NOT to be selfish about the four month wait that I have ahead of me. Really, trying. However, I'm finding it difficult NOT to react to it all. Because, quite frankly, WHAT is this Immunologist going to do for me? More 'trigger' testing? More blood, RAST, Tryptase and 24 hour urine-catchecolamine testing? Like all the testing done earlier this year, those tests will likely show that I have elevated tryptase (22+) and histamine in my system (and that's when I'm NOT reacting.) Do these people NOT understand that this is ANOTHER 4 months without any significant improvement; without the ability to provide financially for my family; without the ability to be the wife, mother, friend and community member that I want to be; have been and hope to be again.

My husband said to me last night, very nonchalantly, "...until you've finished adjusting to your new life..." This hit me like a tonne of bricks. AM I THE LAST PERSON to KNOW that life will NEVER be what I know it's capable of being??? Am I truly living a life without ANY hope of being a functional member of my family, community and society? Am I really going to have to live the rest of my life in this farmhouse?

Am I stupid for not wanting to accept that THIS is it!?!? I am aware that life is being reinvented for me (or rather that I have to reinvent it), but underneath it all, I keep hoping my life will return to some semblance of normalcy and that I'll, at least, be able to drive again. I'm a Gypsy...I need to travel; to move. I always have. So when I'm feeling like a caged animal, WHY can't any of these Doctors understand that I need them to help me NOW, not after going through all this shit for the past year and half AND waiting another four months...just to SEE someone. It's not like he's going to help me on the first appointment.

No wonder I feel so flaming paralyzed.

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.

The Day After...

The sun is shining and the heaviness in my heart has lifted. Turns out I was having a mild reaction yesterday. I WISH I could KNOW when that panic/anxiety that fills me is what it is, and only that, and when it's part of a reaction. It can make a girl feel like a nutbar.

Oddly, some Benadryl, Reactine, Ranitidine and Prednisone and while still itchy well into the night and during sleep, the panic subsided. As did the heart palpitations, sense of impending doom, and my tongue ceased to swell. Epi works waaaaaaaay quicker, but I didn't want the drama of the hospital Emergency Room at West Parry Sound Hospital, and being looked at like I am an insane woman seeking attention by the nursing staff, or certain Doctor's,...so I waited, and waited and waited. It hurt to breathe, because, for some reason, during these reactions there is a spot (always the same spot) in my right lung that hurts like hell when I try to breathe. I used my puffer (Ventolin) but it only takes the edge off. I don't have Asthma. It takes a few hours, usually, for the discomfort to subside. And, yesterday it was my ears, not my kness that hurt like hell post-reaction. I absolutely DO NOT understand WHY this happens, but it does. It's one or the other. Today, I still have earache.

I find crocheting like a madwoman is kind of therapeutic during these episodes as it's meditative and I have to focus on the stitches instead of what is going on in my body. Poor tongue, it looks like it was dragged backwards through a bush today and is covered in what I call the 'red trails of reaction' and is sore, so eating is a chore today. My stomach is purging what little bits I'm putting in today. My poor bottom. Only my eyes and tongue are itchy today, which is better than the neck blotching and face flushing that I had last night.

I consider this a minor reaction. To what? The new computer mouse that my husband bought yesterday? Stress? Feeling sorry for myself? Something from the new furnace? No idea.

I'm soooooooooo sick of this.

However, I AM blessed enough not to be in the situation that Judy is. I don't know Judy. I've never met her, but I listened to her story yesterday afternoon on CBC's White Coat, Black Arts with Dr. B. Goldman. Judy has been living in a hospital room on the East Coast, since last May, on life-support, afflicted with AlS or Lou Gehrig's Disease. Yet, inside of her body shutting down, system by system, vital organ by vital organ, and the prognosis that she might have a year and half left of life, she remains full of love, positivity and has a thirst for living. I find myself inspired by her joy inside her grim situation. So, upon reflection today, I find myself feeling guilty for having let the anxiety/fear of dying/loss of self-control consume me yesterday. The blotches and facial flushing disappeared alongside the fear and today is a brand new day.

So, I remind myself that even though I might have to sit in the car for the Children's Christmas Party in Orrville, Ontario today, that I CAN go out in the car and play "I spy..." with my 7 year old daughter, and that Judy can't. I can still speak, as I am not intubated. I can still listen to CBC in the car (thank goodness...CBC is proving to be one of my connections with the 'real' world out there), or while I bake cookies for the Christmas party. And for these small blessings inside this rollercoaster of hell that is either my latex allergy OR this Systemic Mastocytosis thingy OR whatever the heck is going on, I am utterly grateful.

Angry

I'm really angry.

I'm trying not to be, which is manifesting itself as pointlessness, restlessness, futileness, meaninglessness, and a tight jaw.

I'm aware that I'm angry. Which is better than not being aware of it.

I think (as I try to reason with myself) that I'm angry because I'm missing the Christmas party at the Firehall AND the Conn Family's Annual skate and Christmas Potluck festivities. I'm angry that someone else had to take my children (but grateful that she offered, and then took them. They will have seen loads of their friends today and had a nice time playing.) I'm angry because, after telling myself that it'll be ok and realizing that I'll have a nice evening at home with my husband...he got the phone call: there's a risk of Risk. He didn't even ask me if it was ok tonight, just put Bart on hold for a sec and looked at me. What am I going to say? DON'T go? THAT would be selfish. I mutter something about how nice it must be to go out anywhere he wants to and that, the girls and I will be fine. They aren't home yet because my girlfriend, who said two hours ago that they were leaving now (so no...my husband couldn't take me to a quiet restaurant for dinner...we were going to try it, see if it was 'safe'), is now breastfeeding her baby and they haven't left yet. I guess I can't get angry over a breastfed baby...but part of me is, because...well, (selfish me) I didn't get to go out for dinner, for once.

When I said, just over a year ago, that I wanted to spend more time at home, this is NOT what I meant. So, we should be careful what we wish for. I didn't want my latex allergy to get so bad that I can no longer get into just any car, or go to any concerts, or take my kids swimming, or take them to birthday parties, or go shopping, or have a job, or have my driver's license taken away by the Ministry (on Doctor's orders), or to be couped up in this farmhouse in the middle of nowhere fighting with the Canadian Government over whether or not I am entitled to Long Term Disability benefits...I just meant, I'd like to spend a bit more time tending to my home, my kids and my husband. I was, afterall, burning my candle at three ends.

I KNOW this is my fault somehow. It doesn't make it any easier to deal with though. And I'm having a really hard time NOT feeling sorry for myself. The isolation is getting to me. My husbands' non-understanding of this rollercoaster of emotions is really difficult to digest and deal with...mind you, I can't imagine that I'm a barrel of fun or roses to deal with either. One day I love it here, the next I want to move back to Winnipeg where I have friends who WILL drop in on any given night and hang out. More than anything, I miss the music that was in our home there, and the food I got to prepare (and people I got to prepare it for, and who would eat it) and falling asleep while my husband and our mutual friends played music into the night. There's none of that here. He goes out to play, if he plays. No-one drops by...and why would they? We live in the middle of butt fuck nowhere. When I drove, I compensated for this by going to them.

I'm sure none of this is helped by the lack of sunshine in the sky. For the past two weeks, the sky has been heavy with snow. There are brief moments of blue that have blessed the skies in between the netherdim of gray that's hung over our heads and then dumped feet upon feet of white stuff at our doorstep, under our cars and on our roof. It's too wet to make snowmen with. My ass is too big to get on the GT Racer, so pummeling down our hill with the kids hasn't been an option either. I broke the snowblower the only time I used it this season...and it isn't even January. The dog doesn't even want to go out for very long. I guess I should be grateful that it isn't -40 below.

This Christmas was supposed to be a warm, fuzzy family affair...with Tracy coming all the way from England to spend the first of eons' of Xmas' in England. This'll be cousin Lauryn's first Christmas, as she's now 18 and no longer under the squelch of her Jehovah Witness parents. And we, were supposed to be joining them. My brother, being my brother, was the first to bail. He's got a new girlfriend, and in typical Simon fashion can't and WON't tell a girl that his family is important too...because we aren't yet. We'll have to wait until he has babies for that. (I know...I'm guilty too.) But, due to my inability to fly, and the difficulty in traversing Canada's Great Lakes' climate this time of year, and my inability to guarantee life-safety in a hotel room on route, we had to decline the invitation to spend the FIRST Christmas in over two decades with my family as well. My husband's family wins the monopoly on the festivities again.

I don't give a shit about Christmas this year. Ho ho fucking ho. Who'd like a crocheted hat...that's ALL I've been able to produce/make so far this year...unless you'd like my watercolouring offerings (that are pretty sad.)

I've been trying, with this time that I've been given (either due to my latex allergy being so severe OR this Systemic Mastocytosis loose-diagnosis by one Oncologist and denial by another Oncologist) situation OR whatever the hell it is that's going on with me, to remain positive. Tonight, obviously, I'm having a bit of a hard time with that. I've been trying to think about ALL the gifts this situation has given me. However, the List of Losses (as I've come to lovingly address them) that I've accumulated, is MUCh bigger than any of the pluses or gifts so far. I'm having trouble enjoying this time at home (how do people who win the Lotto do it????) but all I feel is guilty.

Guilty over what I'm not doing; guilty over the days that I can barely get out of bed; guilty about how much this body often hurts; guilty about the huge fear that I'm developing (and wish desperately for it to go away!); guilty over letting my family down for Christmas; guilty over letting Mandi down with her movie (I have a part in it...and have yet to film the last two scenes...I need to get back to Winnipeg to do so); guilty over this weight that my body keeps gaining, despite working out and eating 'healthy' and well; guilty over killing our baby/ies in September; guilty about not being the best parent I can be to the two girls we have; guilty over not being happy about being at home; guilty about not having our home 'perfect' despite all the time I have in it; guilty about resenting my husband a game of Risk with mutual male friends; guilty about not being 'there' for anyone recently; guilty about not saving lives with Seguin Fire Services; guilty about not being well enough to live this life I've been given.

And then...I remind myself that these are all JUST thoughts. But my God they can inundate a person.

Thank God, I can still write.

Flying

It's been 8 months since I last step foot on a plane.

I had a latex reaction on board my last flight. I was afraid to use Epi on a flight, especially with two children in tow. So, I took a pile of Benadryl and hoped for the best. I got through it ok, but still didn't feel well. The next day, I inadvertently touched a rubber band...that sent me reeling into FULL anaphylactic shock. I was advised NOT to fly.

Now 8 months on. My husband is STILL in Ontario, at our farm, with the only job in the family (which has benefits...a total God Send.) SO...we are venturing back. I've been soooooo depressed being apart from him, and our dog Charlotte.

Everyone is concerned. At first we thought it would be best if we drove. That would mean my husband would drive two days here to get us, and then drive two days back the other way. That's a heck of a lot of driving for one guy. My syncoping with SM has had my drivers license pulled. (What? No blacking out behind the wheel of a car????) However, as my Immunologist points out, the risks are the same with flying as with travelling two days by car...ANYTHING can happen...we just need to be prepared.

The difference flying THIS time is that I will have a treasure trove of medications in me, with me and on me to deal with the situation. AND, with all the reactions I've had in the past 8 months, I've learned that Epi REALLY is my friend and is to be used when necessary. When in doubt, use it. I've only exacerbated reactions by NOT taking it...so lesson learned.

AND, I'm sooooooooooo impressed with West Jet.

I spoke to a lovely lady at the "Special Guest" hotline yesterday. I told her I would be travelling with two children, 8 Epipens and doubling up on my antihistamines (so will be heavily medicated), short-term, for this 2 and half hour flight...was there anything special I needed to do? She told me it's what THEY needed to do for me. So the girls and I will have a flight crew person assigned to us to take care of us, check on us and, if necessary hand deliver us to my husband in Toronto. I am to advise the crew of where my Epi's are, and give them verbal consent to administer them in the event of an emergency. She took my 'emergency' contact info and applied it to our reservation/file, and said we were all set. I feel SOOOOOOOO much better about flying now.

So, tomorrow night we will be off to Toronto. Headed home. We won't get in until really really late. But, I miss my husband, miss my dog, miss my family, friends and community there and just wanna get home. Even if my dad thinks that Ontario is totally toxic and is killing me.

We have plans to make. Things to do, and to move. With my SM, the farmhouse isn't a good place to live. The dust and mold are huge triggers for me. But then, so is stress and anxiety. I'm learning to be more Zen.

So, this flight will be what 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.