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.

Two Days of Nothing...

I'm almost afraid to write about going two days now without any signs of 'reactions'. Don't wanna jinx myself. No swelling, tongue normal, doesn't hurt to breathe, the spots on my chest have settled down into what I can only describe as sort of light moles (wonder if they'll disappear completely, or hang around?) and they have ceased their tireless itching, no digestive disturbances, no sleep disturbances, no weather disturbances, no emotional disturbances, feeling OK.

WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE HOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!

Mind you, I've been on a low carb diet for two days. And, with the exception of custard this afternoon, dairy free too. Maybe I should eat this way more often? I don't even feel bloated anymore. The swelling around my ankles has died down. I suspect it has to do with the iodine I've been slathering on my hips, that's being absorbed quicker than quick into my body. My Homeopath suggested a couple of years ago that I try this. I take a Q-tip and rub Iodine on my hips in about a Looney or a Two-ney diameter (that's currency in Canada.) If it's still there the next day, my thyroid is just fine and my body has no use for it. If it's gone, then keep applying until my body has no use for it. My iodine spots are disappearing in about an hour at the moment...a sign that my thyroid ain't feeling so hot.

It's 8:30 pm in my neck of the woods and I'm tired, but I'll take that over all the trauma and drama that has been my physical and psychological life recently. I guess being holed up at home has it's bonuses. Haven't been out of the house for two days. Usually I get at least a walk in, but it's been too icy and flaming cold for that. Not even my down filled jacket is enough for me to suit up and hit the elements. My dog, Charlotte, doesn't want to be outside a second longer than she needs to be too, so I'll take that as a sign. I can't wait to hit the pillow tonight.

The Canadian Mastocytosis group put out a message today (or the other day...I just got it today) for submissions of diagnosis stories. As this process is often lengthy, frustrating and disheartening, they are hoping to gather stories of folks who've been down the road. You don't necessarily have to be Canadian to join the research team with your story. I don't have permission to post this message on my blog right now, so I'll hold off until I do. But, I think it's important to know that they are seeking your journey. None of this needs to be in vain.

On that note, I can't keep my eyes open a moment longer. g'night all.

Blogs

Up until recently, I thought 'Blogging' was something that I did when I filled this little box with my ramblings, observations, neuroses, dribblings or moments of enlightenment. It turns out that I can 'blog' by reading the writings of others! Turns out that I can spend a portion of my day NOT feeling cut off from the world (that I knew) by reading the thoughts, visions and arguments of people from allllllllllll over the world...this is freaking brilliant!!! I'm sooooo excited. There's a whole world oooooooooooooout there...

IF you have life-threatening allergies/systemic issues the way that I do, you'll appreciate this point of view all the more. Imagine for a moment NOT being able to leave your home because out there could kill you? I'm not being melodramatic or ridiculous...this is my life now. I do get out every once in a while, but it's in extremely controlled environments. This laptop computer, high speed internet, and the portal that opens with a few agile strokes of the keys is nothing short of life-saving. Well, I'm speaking from personal experience when I say that.

This evening, for example, I read http://unhurriedscribblings.blogspot.com/ and discovered the blog of someone who shares a background/passion for theatre while living in the world and while finding his footing in Blogdom. It's about time someone drew Obama AND Chekhov into the same breath...mind you, there's no better time in USA history/World history for poetic drama than now. Unless you're a suicide bomber, and then you're likely wrapped up in your own poetic drama, so much so, that nobody elses' life/drama/poetry really matters. I really enjoy the connections that Steve makes in his writing, and for reminding me about some of the sources of inspiration that I used to enjoy. It's been a looooooooong time since Theatre was my whole life.

So Steve, thanks, thanks very much for opening my eyes to the possibilities that my Blog and Blogdom doesn't have to be about what I have to say, so much as what I have to share. And reading/listening is equally as important as putting it out there.

Flub

I've written before about weight on this 5'2'' frame of mine but here I am, about to embark on THE worst time of year to 'diet' or 'be good' or whatever and all I can think is...I HAVE to. I've gained 22lbs since I got back to Ontario, and it 'ain't all that good lovin'. I think I must be stuffing my face without realizing it! Seriously. I have NO IDEA HOW this extra 22lbs packed on, and I was overweight to begin with.

Instead of getting all down on myself, which I could, I've decided to be proactive about it. I've spent most of today NOTING what my 'habits' are...and it seems I'm a bird-feeder...small pecks of whatever I can find, throughout the day. I'm thinking THIS might have something to do with my current flub situation.

Some people might want to blame all the steroids they are on for this weight gain...but I don't. That may well be present (inhalers and pills) BUT they keep me alive when needed, so I need to be real about them. I'm just going to have work a damn sight harder to get this under control.

This has been a real downer for me because I've been sooooooooooo disciplined about hitting the treadmill the past 3 weeks. And here, I have a 22lb weight gain to show for my building up to 50 mins of treadmill cardio, plus my 20 minute walk with the dog to warm up. The biggest downer is HOW HUGE I feel. My ankles are swollen, my face is puffy and swollen and I feel like I'm carrying around dead weight on my body...oh wait, I AM. I'm overweight by about 70lbs right now (and yes, yada yada, I carry it well) which is sort of the equivalent of carrying around my oldest daughter all the time. No wonder my knees are killing me!!!

IF you have any pointers, I'm all ears. I gotta move this weight. I can't feel like this much longer. It feels horrid!!!! And wrong. I could totally understand this if I sat on my ass all day, but I don't. I obviously need to keep moving MORE. Eat less. Eat differently? There's no surprise in my not digesting/tolerating a lot of foods...think I might seriously, for health reasons, have to switch to a total vegan diet. Meat, dairy and I do NOT do well at all. I keep thinking I have to eat it because, um, I do...which seems like a shitty reason to eat stuff that your body obviously isn't processing very well.

Like I said...any pointers are most welcome.

I AM drinking water. And drinking diuretic teas today in the hopes that it'll shift some of this body swelling (different from flub)...ugh. I feel like dung.

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.

Asking

Apparently, one of the biggest problems that I face in being a human Being, is my inability to ask.

Should I have to?

Do I wait for others to ask me what it obvious? Do I teach my children that they should sit on their ass until incited to action by someone asking? Or, do I teach them to be compassionate observers, listeners, and empathic Beings...so that they may be able to do both, ask and do without being asked. Sometimes it's nice not to have to ask. It makes receiving all the more bearable.

Which brings me to another point...receiving. I'm not particularly good at this either. My friend Barb has become a HUGE lesson in reception for me. Normally I would run for the hills in light of someone's generosity but as Barb explains to me, it helps her to feel human, and good, and healthy to be giving...by virtue of which, requires there be someone to give to. In this case, me.

I've been humbled by her friendship, the gifts of art lessons, baking, food together, ideas and the "big plans I have for you"...like others before her, she feels she sees something in me; something worth nurturing, loving and encouraging. I'll be honest, I find this exhaustive. SOOOO much pressure. WHAT exactly IS this great purpose??? This great purpose for me???? Do we all, at some point, find ourselves juggling this argument, trying to figure out why we're all here, and what we need to be doing in our lives to move forward or enhance the planet and the lives of others? Barb feels this great work begins at home, right in our backyard, obviously with me. How exactly did I become a stray cat? I mean no offense in saying this at all. I have had my fair share of stray cats. Funny thing is, I've tried NOT to have any the past few years, and all it's made me is selfish, unhappy and unhealthy...so maybe there is something to be said for Barb's argument that her nurturing in her own backyard makes her feel healthy?

Is this what we all need to do to be healthy? Help others? Help others. Be of service to one another, including ourselves and our families and health/happiness will roll in? Boy, wouldn't that be nice.

Tubal Ligation vs. Vasectomy; Me or Him?

After a couple of kids, a couple of pregnancy scares and sorrows, it's that time in our marriage when we need to do something, um, long term. The question is, which one of us?

I have girlfriends that swear that THEY had the babies, so therefore it should fall to the man to 'take one for the team'. I have other girlfriends that think that it's THEIR body and they've always done what they need to do to take care of not getting pregnant when they didn't want to. And then there's us.

I've tried JUST about everything available to womankind for birth control: pills, injections, IUD, condoms (sooo much fun with a latex allergy!), non-latex condoms, spermicide, abstinence, morning after pills, pull-out, do everything else but, and here we are...Nine years into our marriage, two children, and he doesn't trust doctors. So, things are still falling to me to take care of.

This past September was horrendous. I had to have a 'medicinal abortion'...surgery being a bit risky for a girl with such serious latex allergies, and with this past year's allergic reactions to who knows what?...and I'm not kidding when I tell you that it (the actual 'purging' part of the week long ordeal) was worse than having my second daughter. Since then, I have been terrified, and I mean TERRIFIED, of another 'oops'. Since my husband was at work when I was forcing my body to dispel of our unborn child(ren), he perhaps doesn't understand or realize HOW bad it was and HOW terrified I am of EVER having my body go through that hell ever again. Let alone the moral implications of it all. Or spiritual. Apparently this ordeal, his mother's rendition of it too (she got me through it, with drugs, heat pads and loads of 'it'll be ok"s), nor the lecture she delivered to him when he did arrive home, was enough for him to book himself an appointment to go and speak to our doctor about getting snipped. And why would he...afterall, he didn't feel anything, and it's easy to forget when you haven't felt anything. But I remember.

So, I booked an appointment to speak to a doctor about tubal ligation. Not because I want the risk of dying under anaesthetic or want my body meddled with ANY more this year, but because the fear of getting pregnant again is too huge for me NOT to do something about it.

We had our appointment with the doctor in Ambulatory Care at our local hospital, about an hour after my bone marrow biopsy. His opinion was/is that it is far better for women to have their bodies dealt with than mens because:

a) it's women that get pregnant, not men
b) men go through 'menopause' too and it's psychologically difficult for men NOT to equate their no longer having a first thing in the morning erection (when they get older) with having been snipped earlier in life and that they are prone to affairs, buying expensive cars, and taking off on their wives...blaming the snip (and being forced into it) on this whole sordid lack of masculinity (manifesting in no longer having an A.M. boner.)
c) men don't like to have their testicles messed around with.

I don't particularly like the idea of someone messing around with my ovaries.

I don't like the idea that perhaps, just perhaps, some miniscule piece of O.R. equipment might contain latex and throw me into anaphylaxis while under anaesthetic. I might not wake up.

My friend Barb offers that she got her tubal ligation years ago because men are dealing with hundreds of sperm in one load, while she deals with a single egg, monthly. It seems reasonable to her, and seemed reasonable, that she should take one for the team.

I might be ok with this equation, if my 9 year marriage didn't feel like it's usually, or always ME, taking one for the team. It's difficult not to be petty. There is very little that is important enough to my husband for him to wake up on a morning and feel utterly motivated to DO anything on his own...if I was a guitar or a computer, this would be different. I hate thinking this way about him. HATE IT. I want to look at him with compassionate, gushy eyes and remark to myself how amazing he is...but it's difficult to do that when you find yourself clawing, gnashing your teeth or worse, nagging. About anything. Even taking out the garbage. Too bad I'm not a guitar or a computer.

After nine years of marriage, you'd think that I would've learned my lesson. His dad says he's been like this his whole life, as do all of the women who are close enough friends with his parents to be called 'Aunty'. I foolishly thought if I got the ball rolling, with talk of a tubal ligation, that he would be spurred into action, actual action, so that I wouldn't have to go through something else. But apparently I'm not loved enough for this action. Once again, I am the brunt of inaction...much the way I would still be driving him around IF his dad hadn't called, booked his driving lessons, and we just told him he would go. What is he waiting for...me to TELL him to go get snipped???? Why can't I be important enough for him to just DO it? Oh right...because I'm an idiot; I'm not a computer and I'm not a guitar. And because the whole time that he is comfortable in his inaction, his world is ok. It doesn't matter if this causes discomfort to anyone else...no his wife being uncomfortable the whole week of Xmas 2008 is going to be worth it because he didn't have to do anything, his body won't be messed with AND he won't feel a thing.

I should mention that I'm not entirely comfortable with the idea of him being meddled with either. And it bothers me that he is uncomfortable with it all. And I don't want to force him into anything...because (and again, perhaps foolishly) I want him to arrive at DOING on his own.

As I continue to remind him, my problem is never what he DOES do, it's usually what he DOESN'T do.

This is who I'm married to, and he's not willing to change. So, despite what unpleasant opinions I am forming about the man I love & despite my not wanting to form those opinions, it remains & looks like I'm taking one for the team again.

This sucks that it's come to this.

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.

Feeling Good

The other day, I was having a seriously dark day. Being virtually housebound can get to a girl sometimes. So dark in fact, that well...it was darker than dark. I called a good friend, in Winnipeg, who reminded me of some the things I used to do for myself to FEEL good. These included, writing, painting, creating things, burning incense and wearing sexy underwear. I made a joke about putting a corset and garters on under my sweat pants and then, it occurred to me that this might actually be a good idea.

So, upstairs I went.

I don't really have a 'sexy' drawer (as my good friend Lori calls it) because my corsets, garters, stockings, babydolls, toys (when I didn't have such a life-threatening latex allergy), etc. have always been tossed in with my regular gotchies, bra's and socks. So, I riffled through my stuff. Not sure that this stuff would even fit me anymore but...ok, I put on a corset, and a pair of garters and strapped a pair of long knee-high socks to the garters. Then I laughed at myself. Because, the thought of ACTUALLY putting my 'lounge' pants (fancy word for sweats turned yoga) on top of these slinky bits was absurd.

But put my old lady, hanging around the house, sweats back on, I did...

And guess what? I FELT AMAZING.

I vacuumed, I did the dishes, I made tea, made the kids their after-school snack, cleaned the rats, walked the dog and got ready to go to 'game' night at Lori's. At game night, I felt great and it wasn't the wine. We ate great food, drank wine, played our game and chatted up a storm...and I'm glad that I then felt silly for feeling so grotty earlier on. Here I'd been ready to hang myself in the barn rafters and all I needed to do was put on some sexy underwear.

I'd forgotten HOW GOOD garters feel on the thighs, especially when you sit down/stand up and they tug a little. And I remembered why I used to go to University dressed this way, on most days. No-one knew I was all vixened up under my student clothes, but me. There is something about being dressed for sex, any moment of the day, that is...liberating, tantalizing and confidence-building. No-one knew, not even my husband, that I was all vixened up under my Mum-clothes at game night in Orrville. But I did. And that, I learned, is ALL that matters.

So, I don't need to be 22 and looking to get laid to wear my things. I just need to want to. And want to, I do. In fact, I think it's time to go online and buy some more...because it's about how I feel. And if I feel amazing with a corset and garters under my sweats...so be it.