Friday, February 27, 2009

Is it the Next Day?

Almost 2:30 am and I'm STILL awake. Am finally starting to there sleep soon for me? Please, I got about 4 hours, broken up in the past um, 3 or 4 days. CLoser to 4. Not kidding. This is insane.

Am feeling a LOT less hostile though. A calmness has washed over me. Wonder if this is what it was like for Jesus, for 40 days and 40 nights? His strength is obviously bigger than mine...all I want to do is curl up, be warm and Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

Still up and down with flushing, gut stuff, tongue tingly and only a bit swallon in the back...but I can breathe and swallow and breathe and...although thoughts aren't coming to me with nearly the clarity they normally do. I'd better cut myself some of that slack I'm always going on about.

Oh right, there is 'a chemical warfare going on in this body'...need to understand the physiological, emotional and physical adjustments to ketotifen...hope this passes soon.

[A yawn] I yawned! This could be a sign!!!

Ok, back to bed to try...

Thursday, February 26, 2009

Over 60

Can't believe that I've not slept in over 60 hours now...maybe longer. I've lost track. Have taken every med under the sun, all my antihistamines, and I'm still awake.

No Rest For The Wicked

It's been over 50 hours, oh, 52 now, since I've had any sleep.

Strange thing is, I'm not even tired anymore. Just totally flushed, achy, miserable, mad, grumpy, slightly manic and accusatory. I feel so alone. I know I'm not, logically...but I feel it. I explained it in an email to a close friend last night...I feel like I'm drifting on this big, black, dark, cold ocean, the white-tipped waves like those out of those terrifying tuna fishing documentaries or that film with George Clooney, and no life-jacket on. No boats in sight. No land in sight. Just miles of cold, dark, North Atlantic ocean.

My friend Barb thinks perhaps it might be the Ketotifen that's interfering with my sleep. It's a new addition to my drug regime. Ironically, the bottle says 'May Cause Drowsiness'. Usually the barrage of anti-histamines that I take, mean that I don't have to use a sleeping pill. I took it all last night: Zopiclone sleeping pill, gravol, bonamine (heavier, sleepier, anti-nauseant), I meditated, I drank Sleepy Time tea, I lay still, I got into bed with my children (because their smell is usually sleep inducing and calming), I cleaned the kitchen from top to bottom, floors, bathroom, took a shower, soaked my feet, exercised, did yoga, watched tv, read Education Theory books, read some fiction...and to no avail. I might have to crack open some Biochemistry books.

My husband thinks I should have a dig around to see if we have any weed lying around, smoke that and go to bed. I dunno...

I'm cold. I have eaten barely anything in equally as long, and am not hungry. At least the nausea is at bay.

Tachycardia visits intermittently with its cousin, Brachycardia. Up and Down. Ebbs and flows. Undulating waves of almost reaction, but not quite.

At least my body pain has subsided. So I don't need to take Percoset today. I have a tolerable amount of pain in my knees and leg long bones.

There's a weight on my chest but I can breathe.

My tongue feels fine...which is a nice change.

I'm going to go get under the heat blanket, even at 20 in the house (with new windows, no more drafty doors, new furnace and woodstove) I'm still cold. My hands and feet are cold. Body temp is ok though, teeny bit low but nothing to be worried about: 36.1C/96.8 F. I don't fret until I go down to 92. By which time I can't function.

Wednesday, February 25, 2009


I can't believe I didn't sleep at all last night. Perhaps the drama and stress over this contractor malarky was too much for me yesterday? I can't believe how much pain I was in. I hurt too much to get out of bed to get to pain meds. As I'm sleeping alone at the moment (knee is still healing from surgery two weeks ago), I couldn't ask or nudge anyone. Every long bone & joint in my body felt like someone had taken a mallet to it. My knees, my elbows, my arms, my legs...unreal pain. I wouldn't wish this pain on anyone.

Yesterday, I was on the verge of an anaphylactic reaction. Flushed, fat tongue (but breathing and swallowing), pain in my lungs, anxiety, tachycardia & brachycardia changing places every few minutes, knee and leg pain, hand tremors, couldn't get warm, feeling faint (but didn't pass out...pheeeee-ew)...I used my arsenal of drugs. Kept things at bay. I avoided using Prednisone, as it makes me fat and crazy, until late into the afternoon and it was looking like Epi was inevitable and the drama of Emerg. And, it seems to have made all the difference in the world. Instead of flaring up every 2-3 hours, I managed to go 6 hours. Then everyone went to bed, and I read cozied up in my heat blanket. I assumed I would just fall asleep, with all the anti-histamines I'd taken. But no, the pain was to get the better of me. All the other symptoms subsided and I was left with the pain.

At 2 am, I thought about forcing myself to get up, cross the room, to my desk where the meds are all sitting. It's really strange when you hurt THAT badly, that you can't get to what can help you. It's a very disconcerting feeling. Powerless.

At 3 am, I thought about banging on the walls to wake my husband upstairs. I tried, but it hurt too much to lift my arms. The weight was unreal. I also thought that if I took pain killers now, and maybe a sleeping pill (or half) that at this point, I'd be such a grump, intolerable, unwakeable human being at 7 am that I wouldn't be able to stomach myself. I won't do this to my children, or to my husband. Not any more. I can't live with myself for dumping my agony on I'm choosing not to.

My dog, Charlotte, must've known how I was feeling, because she lay right on top of me...not only keeping me warm, but applying pressure (that helps a bit) to my aching body. I wonder if it'll be worth teaching her to retrieve my 'kit' for me? She's incredibly smart, and sensitive, so it might be possible. Sometimes, I swear, she knows I'm reacting before I do. She won't leave my side, and gets an urgency in her eyes that I've not seen in a dog before.

At 4 am, I cried.

At 5 am, I was still crying.

At 6 am, I tried to get up and couldn't. It hurt too much. I felt pathetic, weak, stupid, powerless, drained, exhausted, angry, useless, and insignificant.

At 6:30 am, I had to tell myself off for being so mean to myself. I tried to meditate but my body screamed louder than my ability to master mind over matter. I told myself it was ok, "I don't have to be strong right now because I'm not." Just let it be.

At 6:45 am, I told myself that it'd be ok. My husband would be getting up in 15 minutes and could help me.

At 7:00 am, he came in. "Morning duck, wakey wakey rise and shine!" I told him that I hadn't slept yet. He asked me why. I said that I was in so much pain, I couldn't sleep. He said that I should expect some pain with my knee surgery. You don't understand, I told him, it wasn't just my knees. He asked me why I hadn't taken my painkillers and maybe a sleeping pill. I hurt too much to get to them. He told me to take some now, and when the girls were on the school bus, back to bed. In his morning daze, he sauntered off to the loo to pee. My meds were still across the room on my desk.

At 7:05 am, my oldest daughter came in for her morning hug. I asked her to get my painkillers from the desk. She did, hugged me and said I looked terrible. I said I'd had a bad night, but I'd be fine. She got me a bottle of water, I reluctantly took two Percosets, and waited.

At 7:15, I got out of bed. I don't use these painkillers very often because they're habit-forming, and while I'm fortunate not to have an addictive personality, I don't want to fall into the unfortunate tunnel of painkiller addiction that is so easy to spiral into. So...I wait, hoping not to have to use this stuff. However, this morning, I was thankful for my empty stomach (vomitting and diahrrea all evening last night) because I felt that wave of relief wash over me very quickly.

I haven't gone back to bed yet. Pain-free, and a bit dazed, after the girls got on the school bus, I took Charlotte for a morning walk. We made it to Tara and Pete's house. My first walk in two weeks. Slower than normal, but we made it. I was careful not to push myself too hard. Listening to Eckhart Tolle on my iPod, Charlotte and I walked in the gorgeous blue-skyed, -2, warmish winter morning. My dog, Eckhart, my camera and my Self, the crunch of the snow underfoot was glorious, we walked. I was really proud of myself for getting to their house.

The pain is starting to creep back up on me now. I may have to take some more painkillers soon, but will wait to see how it goes. My face is flushed, I can't stomach the thought of food and I'm cold. Obviously my Mast Cells aren't happy campers at the moment. So, I need to honour what is happening in my body right now. And rest.

Tuesday, February 24, 2009

I'm adding a couple of photo's today. There's a couple of me on a good day and my usual Self. The others, are me in the beginnings of a reaction. Flushing has begun, it's all over my chest and creeping up my neck and over my shoulders; my eyes are starting to get puffy; the bridge on my nose is starting to swell, and you can't see it but my tongue begins to swell and my airway becomes constricted and obviously, I am unable to take photo's of myself at this point; then I vomit and usually get horrendous diahrrhea. And then it's ALL happening at once, I start to panic and feel like I'm gonna die...

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, 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:, 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...

Sunday, February 22, 2009

Mastocytosis In Action

The following You Tube video was recently posted on the Canadian Mastocytosis Support Group website.  I want to share it with you here because THIS is what my emergency situation often looks like, but sometimes mine appears worse.  However, it's ALL life-threatening, as you will see here.  I've learned from this video to stop being a 'hero' and waiting until it all gets much worse than this to call for help.  Remember that this girl in this video HAS ALREADY used her Epi, which is why her symptoms are subsiding, for now...and I'm not quite sure how she feels so fabulous when she leaves the hospital, I feel like death for days, sometimes weeks.

 The other video I'm posting is for the Uticaria Pigmentosa form of this disease. I 'flush' or get red and blotchy they way that Baby Candice does.  And those benign 'tumours' that burst, I've had and get those too.  They only appear during a reaction and takes weeks to go away.  They itch like hell.

Friday, February 20, 2009

It's Been A Couple of Good Days...

Living with Systemic Mastocytosis means that you, essentially, learn to 'go with the flow'. Do what you can on good days. Don't on bad days. Perhaps some spiritually sound folks have an easy time with this? Perhaps not. I know that this particular part of my life journey, now with a confirmed Systemic Mastocytosis diagnosis, means that I really need to cut myself some slack. I'm very quick to encourage my friends, family, community to do this...however, taking some of your own medicine can often taste bad, even if it's good for you.

I'm not really enjoying the taste in my mouth; my Self; my soul right now.

Dr. Vadas' comments to me the other day, are ringing clearly, loudly and poignantly in my head. "Fiona, this IS your life. You are going to need to adjust to the reality of this disease."

He's a good, strong, compassionate and understanding doctor. At least my first 3 hours with him say so. I asked my husband tonight if this was real? "Do you think taking all these meds will help? Do you think it's worth it? Do you think they'll work?" My husband pointedly replies, "Honey, you don't have three articles published in the Toronto Star without reason. I think this man knows his shit and I think we need to listen to him." Strong words coming from a man who has hitherto referred to doctors as "quacks" (whether they are allopathic, homeopathic, naturopathic, Chinese Medicine, Ayurvedic, etc.) Where did he see these articles? "They were on his wall," he replies. Whoa, in my self-consumption, I didn't notice anything except Dr. Vadas, the elephant on his desk, the garbage can (I almost threw up in his office) and my husband. Talk about being the center of your own Universe...I didn't even notice this man's credentials and celebrations of his VERY important life work. I was completely absorbed in what he thought was going on with me; and what we could DO about it...if anything.

I understand my self-absorption. It's been a seriously long journey getting to this man. And, to this diagnosis. In the land of Systemic Mastocytosis, you get told and treated like you just have some anxiety issues, and misunderstood by many in the medical profession, as well as in your personal life. You get called a "hypochondriac" and "crazy"...and then worse, you start telling yourself these untruths because...well, for me, I just couldn't understand WHY I was feeling this shitty and WHY I kept having these anaphylactic reactions and WHY I hurt so much in my joints and bones and WHY I was so itchy and WHY the gorgeousity of the mid-day sun made me feel weak, itchy, and fatigued beyond belief and WHY I couldn't keep my body temperature comfortable (I get REALLY cold) and many many more WHY's.

I sent a modified version of my last blog post to my family and close friends (who are really like family to me, and since I REALLY believe we are part of a global family, I am no longer going to make the distinction.) I did this for a number of reasons. Firstly, because they care and, independent of one another, have inquired about what's going on with me and my health situation at some point during the past year...especially when it's been posted on Facebook that I've just had a reaction, or am in the hospital AGAIN, or recovering from reactions. Sometimes I get to post that, and sometimes my husband posts for that my family know the reason for my silence. Secondly, it seemed the more I sent this message, and wrote introductions to it, the more this all became a little bit more real for me. We should never underestimate the power of denial in our lives. Or the power of sharing, for healing. Or, the power of words. Perhaps that's why I write.

I've been encouraging my good friend Dawn, who has SM, to keep her chin up and, not to let the despair get to her - despite losing her home; her ability to help provide an income for her family; her loss of her career & her identity; and, the multitudes of fear and stress she undergoes every time she suffers a reaction, or an episode. She lives in the USA where she and her husband have to fork out, straight out, of their pockets for her healthcare. You can read about her journey with this disease on her blog: In the USA, having an illness and insufficient, or no, private insurance can just about kill a family financially (not to mention ALL the stress that goes with that) and with the present recession, it's even worse. So, they lost it all, and have had to start new without home ownership. But you can't put a price on healthcare or the necessary pricetag that comes with keeping you alive...and that price needs to be paid. Dawn is worth it. She's an incredible woman, with twin daughters that need her, a man that loves her unconditionally and a family that love her too.

Like Dawn, I have also lost my ability to have a career; contribute financially to my family; my identity and while I live in a FABULOUS country, with its healthcare coverage (for which I am utterly grateful), I find myself feeling like a total hypocrite right now...for encouraging her to be the best she can be inside of this disease and her losses. Because this sucks. REALLY sucks.

Aren't I lucky that we haven't lost our home yet (because Canada picks up the tab for my healthcare...and, thank you!) and we have insurance with my husband's job...and thank goodness for that because otherwise, we'd be approximately $6,000.00 in the hole right now. My Epi pens, alone, at $115.00 a pop and needing almost 40 of them last year alone...well, you get the picture. That doesn't include ambulance rides, and the cost of my ACTUAL care at the hospital or my stays there. Dawn can tell you what it REALLY costs...because they've had to pay it.

I encourage Dawn to embrace the love of her husband, her children, her family and the love that we need to have for ourselves because, quite frankly, it's NOT easy being non-functional. And with this disease, we have lots of non-functional days. Dawn and I both share the massive sense of guilt and self-beratement that comes with being non-functional...because our whole lives we've been functional, and more. I know that Dawn would tell me not to be so hard on myself because what I WANT to write, and express, is my utter anger at having this disease, these reactions and I'm totally pissed off about the loss of my freedoms.

This too, will pass. Denial. Anger. Acceptance...all part of the grieving cycle. And that's what it's like to have a life-threatening &/or terminal illness. Our 'what is's outweigh our 'what we'd like's. And that's just how it is.

So as I swallow the taste in my mouth, the taste of Systemic Mastocytosis. I try to cut myself a little slack because this disease does not make me a failure...despite my feeling like one. And, like I said in my message to my family, there has to be a silver lining in all of this somewhere...because without this hope, it's not worth getting out of bed in the morning. And I need to get out of bed, especially when I don't feel strong enough to.

Thursday, February 19, 2009

Systemic Mastocytosis

I saw Dr. Vadas in Toronto yesterday. If I may comment, he's compassionate, thorough, informed, caring and patient. He specializes in idiopathic anaphylaxis and is Head of Immunology & Allergy at St. Michael's Hospital in Toronto. I was there for almost 3 hours with him. He says he's 99% sure I have SM but the only way to tell for sure is to do the c-kit mutation test...which is another bone marrow biopsy. He thinks I've been through enough already, including a bone marrow biopsy (bmb), and it can wait because quite frankly the only thing it would do is tell us is what we think we already know and he said it would be sort of like just finding the answer and closing the question door.

I told him that I just want my quality of life back and to be well. He laughed nervously and then leaned forward and said to me, "Fiona, dear, THIS IS your life. This is it. All we can do is try to make you comfortable. There is no cure for this disease at this stage, we're looking, but we have to try to minimize the anaphylaxis reactions and keep you comfortable. So we are going to try a combination of drugs..." Plus, I have to do all the things I'm already doing.

So, I'm on Gastrocom now. On top of everything I already have. And, am to continue following protocol for the anaphylaxis when it hits. And to continue to be isolated; keep safe. He says it's a good job I'm already on Long Term Disability because I need it.

He says there are three types of this disease. The leukemia kind; the kind where you have a positive bmb and uticaria pigmentosa, itching, etc.; and the kind that I have with no positive regular bmb (because it's not about having TOO MANY mast cells, so much as mast cells that don't behave properly) repeated anaphylaxis, skin flareups, digestive disorders, severe osteo-arthritis (which my orthopedic surgeon found last week when he did my knee surgery), joint swelling and pain; bone pain, flushing, itching, severe fatigue, etc. And then there's the day to day feeling like shit that comes with all of this. We talked about that too.

I hadn't realized until recently HOW itchy I am a lot of the time. Not all of the time though. I think I've spent an inordinate amount of time being 'out' of my body so that I can't feel it. Because when I permit myself to be REALLY present in this skin, I'm itchy. Especially during flareups. Dr. Vadas says I'm not crazy that the shower totally aggravates this too!

We talked a LOT about triggers for me. Heat and cold, especially the extremes. We've ascertained that it's definitely aggravating or causing flareups. We had a joke about living where we live, and how not good for this disease it is. But, this is where we live...

Then there's foods, alcohol, drugs, emotions, latex, chemical sensitivities, bees/wasps...we talked about that too. I'm not to get any venomous snakes any time soon.

He gave me some handouts on Dr. Cem Atkin's work on this indolent form of Masto. He told me it's a super rare disease and that it will take some time for my primary care providers up here in Parry Sound to start understanding what I'm dealing with. He thinks, like I said, that doing another bmb (especially because I go into shock with lidocaine and xylocaine, so I can't have any freezing for it) wouldn't change how we manage me, because it's obvious that I have some sort of mast cell degranulation issues. So, we are going to assume it's SM because, as I mentioned, the treatment and management are the same. All my other tests results and my clinical history point in the SM direction. Glaringly so.

I go back to see him in 6 weeks, am to ring him if I have anaphylaxis in the meantime, and we'll talk about the bmb then. Like I mentioned, he said it's more a question of "I have a final answer", as a patient, that will change for me with the bmb, not a change in management. He thinks it's too much pain and personal suffering for a final answer when we have this much info. already. And, he urged me to come to terms with this disease. It's real. It affects me. It's changed my life. It can kill me. I'm not crazy. It's time to start living WITH this disease instead of hoping it will go away, because it won't. There is no evidence to suggest that anyone has spontaneously corrected themselves, and there's no cure.

So, that's 4 doctors/specialists who think I have SM; and 1 who doesn't (she was only looking for the leukemic form of the disease.)

Ironically, stress and emotional upset/joy can cause flareups too. So, Ican't even get upset about all this! ha ha sniffle ha ha.

Tuesday, February 17, 2009

The knee is healing, albeit stiff. BUT hurts a lot less than before the surgery, which to my mind, is a good sign. The whole post-anesthetic thing has shifted and I'm feeling more human. This is Day two of no anti-histamines and mast cell stabilizers, as I am seeing Dr. Vas tomorrow in Toronto. I think he's doing the whole c-kit mutation testing, etc. ("etc." means I have no idea what else is going on...) I'll be honest, I'm full of hope that this man will have some answers for me; some solutions; some hope? Not sure if that is a ridiculous wanting, but it's there nonetheless.

I was nervous about being med-free for so many days. So far, so good though. I'm pretty much confined to my office/family room at the moment. I've been sleeping here, on my own, since knee surgery last week. (The thought of my husband, or children, or the dog whacking my knee during sleep makes me cringe.) And, I have an essay to write for my distance education course in Adult Program Planning, so there's all the more reason to be confined to my office space/thinking space/work space...sans guilt. My husband went to work today, with the loving stern warning, "no foolishness today, ok?"...meaning, no un-necessary risks, like attempting to go grocery shopping, or going to a neighbour's house for a cup of coffee..all pose the risk of anaphylaxis. My healing knee gives me impetus NOT to go for our usual morning walk...otherwise, I'd feel guilty about that too. So...I'm being 'good'. I'm in my 'safe' room, and here I will stay until tomorrow morning's soujourn down to Toronto. Hopefully this trip will be incident free too. The risk of anaphylaxis is always there.

Like my friend Dawn says in her blog...she's won the husband lottery. She's discovered that her 20 year relationship with Marc is proving to be what we all hope we'll never need...unconditional love and support. My husband too. He spent the entire afternoon yesterday picking up my laundry slack, working with the girls to clean their rooms, did the dishes and appreciated my paltry attempt at dinner (and ate it!) It's hard to imagine being as young as we are (40 ish) and needing THIS much help at home. We have to roll with the days when we can do stuff, and cut ourselves some slack when we can't (someone remind me of this when I'm having a bad day, please.) The whole sense of personal failure slaps you smack in the head when you find yourself unable to get out of bed; or coping with those surges of anxiety that partner with flushing, digestive disturbances, infernal itching, difficulty breathing, body pain, and panic...SO, on a quiet, good day (like today) we are all the more thankful for the peace, tranquility and the kitchen that doesn't need cleaning because your husband already took care of it for you. THANK YOU!!!!!

I am am emblazened with gratitude. The beds are made; the bathroom clean; the kitchen clean; the garbage taken I can sit down and write my essay, guilt-free.

I'd best get to it, as now I'm obviously stalling.

Thursday, February 12, 2009

My knee surgery went well. But, I'm not feeling so hot, post-anesthetic. Keep getting a rancid headache and need to puke. This itching that I'm feeling isn't just under my skin either...I'm all blotchy and red.

I'm tired of this.

Am seeing Dr. Vas. next week. That's not his real name, but that's what he goes by because his surname is so long and complicated. Apparently, he's the only doctor in Canada that might be able to help me? It'll be interesting GETTING to Toronto on 3 days of no meds. Not sure what tests he'll be doing, but he'll be doing something...ergo, no meds/anti-histamines.

My Immunologist has written out some sort of protocol/letter so that I don't run into the 'are you sure you don't have anxiety?' issues with the hospital again. He says he's not surprised, but hopefully this'll help. I hope so too. Nothing like being treated like a nutbar...

Friday, February 6, 2009

Next Wed (Feb 11) I have knee surgery. Had to have a pre-op yesterday and my Immunologist wanted to speak to the anesthetist because going under can kill a person with Mastocytosis (didn't realize we had an official diagnosis yet? Just three opinions that I do; and one opinion that I don't). So, they can't use the usual knock-out cocktail and I need to have benadryl, rantidine & steroids intravenously before and during the procedure. They will intubate me as soon as I'm under, and have Epi on hand in case something shitty occurs. The Anesthetist said, if all goes well you'll wake up in recovery with a painful knee and a really sore throat; if not, you'll wake up in ICU.

Am recovering from an anaphylactic reaction on Wed. NO IDEA what caused it. I've been fighting with reaction-symptoms for about 2 weeks, and a couple of times it looked like I needed Epi but I used my arsenal of meds instead, waited, prayed, meditated (with my husband holding my hands going 'ohhhhhmmmmmmmmmm' for me and coaching me through the pain/constrictedness and asking intermittently if he needed to stab me), tried to breathe and it eventually got better not worse, so didn't use it. But Wednesday, shortly after writing the last blog entry, it all blew up bigger than I could handle and my throat closed in. I thought I was going to die. It really upset me. So the anxiety component was massive.

The Paramedics and First Responders were awesome. But at the hospital, because the Epi worked, and the swelling had all gone down, I was breathing, my O2 saturation was 100% and just had a bit of flushing on the face and neck left...they treated me like I wasn't there. Then, the doctor started asking me if I'd been treated for anxiety before? Ugh. This was after 4 hours of being there, and me telling them that they needed to call my Immunologist so that he can explain to them what's going on, and what they need to do in case I rebound (which I did...) They ignored me and THEN came in at 4:45 pm to tell me that my Immunologist's office closed at 4:30 pm. I know. That's why I told you over 2 hours ago to ring him, and I told you that this is the time the office closes.

My Immunologist says my hospital are getting complacent. He says that they are now so used to my responding well to Epinephrine, and seeing me fine by the time I get to them (sometimes an hour, because of where we live) that they're no longer on alert for me rebounding. Despite knowing that I have a history of rebounding, I was pretty much ignored. When I was rebounding, they all ignored my coughs, splutters and calls for help (which were barely inaudible as I was having trouble). When the doctor finally came in, he remarked, "OH! oh dear, you're rebounding!" and called for a nurse. No shit Sherlock. He then said he could hear me coughing and was waiting to see if it would get better on it's own, or if...maybe I was just feeling anxious. THIS is one reason I hate using Epi and having to go to Emerg. It's when I get treated like this is all in my head, and nothing is going on that I want to crawl into a hole and suffer on my own. Oh wait, I WAS suffering on my own.

They also left my poor husband in the waiting room for over 4 hours. He says this has never happened before, and he thought something really awful was going on because he wasn't allowed in. No, we were just being ignored.

I'm chewing on whether I should write a letter of complaint.

Anyway, as usual, post-reaction, I feel like I've been run over by a lorry/truck and am exhausted. So, I'm off to lie down with my usual post-reaction cocktail of meds. Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

Wednesday, February 4, 2009

The Tide Has Ebbed

I have an infernal cough that won't leave me alone today, and it doesn't feel like a cold. My tongue feels fat at the back, I can't keep warm (house is up to 23 and I'm STILL cold!!!...I can't blame the windows and doors now either, they've all been replaced), and it feels like there's a bear on my back where my lungs hang out. This sucks after SUCH an empowering feel good day yesterday. Like my friend Dawn, with SM, I got three loads of laundry done, all the beds made, rooms tidied AND cleaned the bathroom.
(Dawn has a great blog too, btw.

Today, I feel like I've been run over by a truck and I didn't want to get out of bed this morning. But I did. Grumpy (and trying to control it, which makes me grumpier!) but got everyone's breakfast, lunches, kisses, hugs and out the door to work and school. I feel like such an awful human being (arghhhhhhhhhhhhhhhh...guilt) for permitting the grumpies into my life...and the life of my incredibly patient and understanding family.

I've become aware that I'm tuning out the itching. It's a hard to describe itching, as it comes from the inside to the out. And, it sort of stings from time to time. If I relax and let myself be 'present' in my body, there it is...ITCHY...and I don't have enough hands to scratch all the places it is. So, it seems that I spend most of my waking moments blocking this discomfort out. This is counterproductive to someone who's hell bent on becoming enlightened and Being present.

My tummy isn't happy either. But we won't talk about this. Thank goodness I have a clean bathroom to bear witness to my discomfort. What's the point in eating?

I have blossomed to a super unhealthy 195lbs. On a 5'2" frame, this isn't natural, healthy or ok. No wonder my knees are giving way. No wonder my knees hurt like hell. The odd thing is, I've gained all this weight DESPITE doing all the right things...I exercise daily, get a good 30 mins of cardio in (on top of my morning walk with the dog), I eat healthy, can't snack (have to avoid all the good stuff: corn, potatoes, chocolate, dairy and alcohol), and I drink enough water to sink a ship, not to mention herbal teas (I'm cold most of the time, so I'm constantly trying to warm myself up internally.) Thank goodness my 195 lbs doesn't show in my face. As the Endocrinologist said to me two years ago, when I was up to 192lbs "and WHERE exactly are you putting this 192lbs?"...she didn't believe me, put me on a scale and was gobsmacked. Apparently, I carry my weight well. Lucky dee dah.

I'm tired too, but my brain feels super active. My husband just called, and wants to make sure I get a nap in this afternoon, as I've stopped doing this...out of guilt. Ok...guess I'd better put the heat blanket on.

Oh great...and now I'm flushing....

Tuesday, February 3, 2009


We live in a world of MORE. We want everything, immediately, and we often have and get those things with finances that don't actually belong to us. Fortuitously, I've recently been forced into a situation where I am forced to live with less. And you know what? It's better.

More on this to follow. In simplifying my life, one of the provisions I've made is to make wholesome, homemade snacks for my children for when they come in from school...which is just about I need to go do that.

Less IS more. Seriously. But I will return to convince you of this, later.