yesterday

I've emailed this post that I wrote for my immediate family (to the ones I didn't actually speak to yesterday) to a few of you already, so I'm sorry to repeat myself. However, after some thought, I think it's important for me to be real about this health chronicling, especially when it gets this dark for a person. When I say that if someone had offered to slice my throat for me and let me bleed to death last night and it would have been less pain than what I experienced post reaction, I mean it. I got about an hours sleep last night, and that was with 2 prescription sleeping pills. My life is good, and I love my kids and husband and friends and community (which includes you) but I was tempted to down the remainder of my full bottles of various anti-depressants (that didn't do a thing for me when I was on them, in the end) and the full bottle of sleeping pills I have and anything else that would help this cocktail...last night I was ready to leave this planet because this pain, physical body pain, was unreal. I forgot, until this morning, that I'm usually in hospital at this point and when I get to the point that I can't stand myself and am crying myself into oblivion because of it (and reeling with self pity) a nurse usually suggests that she give me some morphine or percoset (if I can keep things down.) Today, I've purchased a King Sized wet/dry body heating pad because my regular sized one wasn't big enough for the all over body pain I had last night. I couldn't figure out where to put it because every single bone and joint in this body hurt that bad. I was unbelievably cold too. It's July. I had a heat pad on, blankets, wrapped up AND the space heater on in the family room where I slept so as not to wake the rest of the household. I was frozen. My body temp read 89 degrees farenheit.

Reasons to live are important. Especially in the wake of these kinds of invasive thoughts. It's odd today, to me, to be real about how bad that pain gets and how putting yourself out of misery feels like a better way to get through it. Glad I ignored myself. My husband and children are damned good reasons to keep going. Plus, I guess I should really get to work on finishing the two books I'm writing.

I saw my family physician this morning. He's not impressed with how I was handled (or rather not handled, yesterday) and couldn't believe they let me leave the hospital like that. He's given me Percoset for the bone pain. He knows I'm adverse to taking this stuff. However, for nights like last night...

We've also decided to move back to Orillia for the hysterectomy because the only reason the procedure was being moved to St. Michael's hospital was for this whole anaphylaxis/Masto complication thing. This new gynaecologist didn't listen to me about my not doing well on any kind of hormones, or that the IUD I had installed disintegrated inside me, and refuses to call/speak with my Oby/Gyn in Orillia who's SEEN my uterus and knows what the problem is. The new Oby/Gyn has written a full report of my GP, and my GP asked me what I thought of all this. I said I wasn't comfortable with this new guy OR the fact that he wants me to go down roads that I've already been down in the past few years for the same tests to reap the same results and won't even have a dialogue with my Orillia Oby/Gyn. My GP will speak with my Orillia Oby/Gyn about getting this hysterectomy done soon AND they are going to test the uterus for mast cells because it could be that all this hell is sitting in my uterus. Different, but likely. IF I have mast cell issues lurking in vital organs or body systems, my pain sites tell me it's either my uterus/right ovary/right kidney or right adrenal gland, and my stomach/intestines. My GP thinks there is a possibility that we might see an improvement in this whole mast cell malarky without the uterus. There's DEFINITELY hormonal involvement. Got my period yesterday afternoon, with a vengeance.

Anyway, here's what I sent to my immediate family that I did not speak to personally yesterday.
************************************************

I'm so sorry that I'm writing this this way again...I'm tired of talking about this shit so I can't bring myself to repeat myself. I don't want to talk about this on the phone either, right now...if that's ok.

No c-kit mutation on my mast cells. No sign of the other even rarer disease. Oncology/Hematology is closing the book on me and I'm back to Dr. Vadas, my Immunologist.

"WEE HOO!" I said, "so I DON'T have Systemic Mastocytosis!!?!?" My enthusiasm (which when you read down you'll understand why this sentiment wasn't exactly easy for me to express at this time...) was met with a definite "No, that's NOT what this means." It just isn't present in my blood or bone marrow. Quite possibly present somewhere else, I was told. Dr. Vadas might have other suggestions, they said, but likely we won't know until one of my vital organs starts shutting down. They don't know enough about the disease to know what all the markers are for it, and this was a stab in the dark. So I was told I probably still have SM despite this test result being what it is. because clinically, I present in every way as if I have Systemic Mastocytosis. And was told to stay on my medications.

Add fuel to an already sensitive fire: I had a reaction in their waiting room before I saw the doctors. I'm pretty sure it was the Polish lady that came in with super strong alcohol-floral based perfume and sat across from me. We can call this a little reaction, or medium. I was fine when I got there, and all the way down to Toronto in the car. Although, now that I think about it, my bones were already hurting and I had a slight headache, which I attributed to possibly being ready to have my period (which hit me dead in the face this afternoon on route home...oh joy.) There is a huge correlation between menstrual cycles and Systemic Masto. in women, they are discovering. However, after about 20 mins in the waiting room, I began coughing, spluttering, getting short of breath, flushed real bad, eyes and nose running. I've had waaaaaaaaaaay worse reactions, but it was unpleasant. No-one came to see if I was ok...I mean, I wasn't coughing when I showed up. Ant went to ask someone to move me after two epi sprays didn't keep it at bay, initially. They fumbled around not really taking him seriously until he yelled at someone "Look, my wife has life threatening allergies and someone has worn stinky perfume or something and set her off, now PLEASE help me!!! She will go into full ugly anaphylaxis if we don't move her out of the allergen!!!! NOW!" I heard them say they had a room, Ant came back to get me. I got up to go with him, and probably shouldn't have because I was feeling super light headed all of a sudden when I was sitting, and the tachycardia (rapid heart beating) I'd had since before I started coughing and the sense of panic/dread/omg, I'm gonna die feeling that had prompted the 'go get someone' nudge, suddenly disappeared seconds before he returned and I felt 'funny'...next thing I know, I get the all over body tingle and then...I'm on the floor saying, "I'm sorry, I'm sorry..." (and not knowing why I was saying this but aware I was saying it, like it was someone else saying it...) and my head hurt like hell. I have a nice goose egg on my skull where my head, apparently, made contact with the cement floor. A nurse was called, and came over to see me while Ant was holding me on the floor telling I'm ok, "you're ok, I've got you, you're ok, I've got you..." over and over. She asks me what happened. I try to tell her but it hurts to talk and breathe and my tongue is fat.

No-one gave me epinephrine. Or took me to Emerg. or called for help. Not because I didn't need it but because they all just stood there going, "...er..." Not sure where all those people came from but...none of them knew what to do.

I continued to feel like I was going to fall down, even though I was already down...that's a flippin' weird sensation. I've gotten really good at knowing this drop in blood pressure feeling now. It was really fast. And disconcerting.

Someone decided to move me to a room, and collectively they grabbed me and put me in a chair in a nearby examining room. I gave myself more epi spray because this reaction wasn't over.

Doctor came in to check my pupils and they were fine, just a raging headache. I'd given myself one more epi spray by then. And all that breathing, trouble swallowing feeling, pain in my lungs eased up. Then I puked that wonderful ball of allergic foam that I do during reactions. And puked some more.

Then they told me about the bone marrow biopsy results and told me that I could go home. To come to Emerg. if I didn't feel right, started having trouble talking or passed out again.

Don't think Dr. Vadas is going to be very happy about this. I left there with a throbbing head, fat tongue (no -one looked at it and they were afraid to use their instruments to check my breathing, lungs, etc because of the latex issue) and am now in excruciating post reaction bone pain, headache of unbelievable strength, feeling worthless, useless, depressed and super sorry for myself. I should be exhausted, but as usual, I can't sleep now. I'm in so much pain, I, I dunno, I can't even describe it. Thankfully I have a loving husband and children because...I'd let someone shoot me right now otherwise. I'm sooooooooooo frustrated. Don't get me wrong, I'm thrilled this isn't in my bone marrow/blood (no ugly genes or gene coding to pass on to my girls) but the two doctors I saw (Dr. Hicks, my Hematologist is about to drop those twins, hasn't yet, and wasn't feeling well enough to come in today, so I had her replacement - Dr. Hicks brought her up to speed on the phone this morning about me - and this other doctor who got called when I passed out...) just said they were sorry, my life must suck. Avoid triggers and stay safe. Maybe 10 years from now they'll understand more about this disease and its markers but for now, it's so new, they don't really know, and obviously bone marrow biopsies are proving not to be all that helpful (THEN WHY, WHY did I have to go through this again!?!?!??!)...it's a guessing game. For all they know, I could be the first of something else and this could well be Fiona Smith Disease...oh great, THERE's a legacy that I want to leave on this planet.

I did ask if maybe this was all in my head and was met with a united, "NO! There's no way your body can do all of this psychologically. Impossible. No, there is definitely something wrong; You are definitely sick..."

No shit. All of you know though, that I refuse to define myself this way. I'm not in denial that something is wrong but I can't stuff myself into the 'sick' box and stay there. If there's a box that I'm to be stuck in, I won't stop trying to redecorate it, get out of it, make it more comfortable and find ways of enjoying it or to escape from it, even if temporary. Not today though. I'm raw. And hurt. And angry. You all know too, that I try very hard NOT to be these things. Or to feel sorry for myself. I know it could be worse. I don't have leukemia...it's not my child with this. But fuck, I've had it.

Have gotten home, and there is chicken carnage all over the garden, down the driveway, down the road...and it's too dark to see how many of our 32 hens are left. We've found 4, who are alive but might not make it to morning due to shock. Will reassess in the morning.

I can't do this anymore...I'm so tired. Someone please make this go away. And I'm sitting here asking the rhetorical question: HOW the hell did I manage to invite this crap into my life?

Thank you for your continued love, patience and listening. I love each of you for reasons and for lives that are too enormous to mention.

I know sarcasm is the lowest form of humour but, Wee Hoo, I get to live another day.

oxoxoxoxox

fiona

Hell on Earth, or at least Parry Sound

I'm home from the hospital, where I've been since Sunday. Technically, I went in Sat. night, but they sent me home Sunday mid-morning, to return a scant 5 hours later in full anaphylaxis again. Only this time, I managed to get a stomach bleed with it and now have an hiatus hernia from all the wretching/gagging/coughing/puking. Since Friday night, I have suffered 9 full anaphylactic reactions. I blacked out with the reaction on Friday night so after the epi, went to bed instead of calling 911.

Lucky me, I got to take TWO ambulance rides this past weekend. And they had to shoot me up with additional epinephrine on route.

I think I spent most of Monday curled up in a ball in my hospital bed, tears involuntarily streaming down my face, soaking my blue hospital gown. They gave me morphine, benadryl, gravol, pantoloc, some other stronger steroids and ranitidine via IV. The pain ebbed. My self-beratement lingered.

At our local hospital, they have a doctor on weekly rotation who handles ALL the floor patients. This week, it was my lucky week. I had a doctor who refused to return Dr. Vadas' phone calls to the hospital because he didn't "really feel speaking to him will shed any light on the situation, we have it under control" and "I have 30 other patients on this floor, I don't really have time for this call." He'd never heard of SM or Systemic Mastocytosis, nor did he think it real. He wasn't interested in learning about it either. Nor did he think we needed to follow the post reaction protocol of Benadryl every 3-6 hours; prednisone and double up on reactine (super simple and effective things to take and do.) He didn't think it possible that I could be having an allergic reaction THIS continous. He thought I MUST have an ulcer or some kind of gastric otherness going on. Nor did they think I needed to take Ketotifen and Gastrocom/Cromylyn (because they didn't have it in the hospital and had never heard of it.) Ergo...I rebounded...and continued to. Nurses were at a loss as to 'what' was setting me off; and this doctor busied himself with prepping me for a gastrectomy and/or an endoscope. Thank GOD the surgeon who was to do these procedures said he wouldn't do them on someone in anaphylaxis rebound and thought I'd been through quite enough.

So then this doctor decided to do a barium xray. They came to get me as I was coming out of another anaphylactic reaction (nurses shot me up with benadryl and epi), and I was wheeled down to xray puking my guts up. Ummm, the joys of 'allergic foam' and bile.

Add to this that because I'd been admitted to their hospital in the past 6 months and admitted to another Canadian hospital in the past year, I had my nose, mouth & rectum swabbed and was in "isolation/quarantine" until the tests showed I had neither SARS nor Swine flu. So, EVERYONE had to gown up (something I lovingly came to call as "the yellow gown of shame"), mask up, glove up before they came into my room, and I was taken down to xray, in the same gear, trying to throw up through a mask that I wasn't permitted to remove.

Needless to say, when we arrived in xray, I had a total meltdown.

The Radiologist took me seriously. And, refused to shove barium down me until we cleared it with Dr. Vadas. It took about 20 mins, but Dr. Vadas spoke to this doctor and told him that he'd like the barium xray done BUT they must have someone standing by with epi. So, it took another 20 mins for them to find my nurse, (an unbelievably gorgeous young man named Nelson - "Hi Fiona, I'm your nurse" [gahhhhhhhhhhhhh, WHY do I get the gorgeous man-nurse when I've been pushed through several bushes backwards, have no pants on, haven't bathed for two days, am about to drink some barium crap that will then cake to my lips making me look like Al Jolsen ready to sing "Mammy" and am swollen up bigger than big because of the monster steroids they fed me the day before!?!?!?!?]- who arrived with epi.) The xray with barium was fine. Good job I do yoga though...some of the twists and positions I had to get into would be difficult for some folks. It showed an hiatus hernia as the source of the stomach bleed, this newly acquired pain in my chest/back, unbelievable gut pain and burning (acid reflux is unbelievably painful in this manner), as well as the continued vomitting. Interestingly, the lower and mid gut pain totally subsided whenever they shot me up with benadryl (leading me to conclude that this pain was allergic inflammation pain) and came back with a vengeance as soon as the benadryl wore off.

The arrogant doctor came in yesterday morning and told me that I'd be released because they didn't really know what else to do for me (the kitchen had no idea what to feed me either.) The stomach bleed was under control and wasn't caused by an ulcer but rather from this hernia I've acquired, and it looks like I must be suffering with a serious allergic reaction.

No kidding...

So, he advised me to go home and follow the protocol that my specialist had me follow and to come back in if I couldn't breathe or had further serious anaphylaxis. He called in a prescription for pantaloc to help with the hiatus hernia and the reflux I'm suffering because of it, and percoset for the pain. Told me to take it easy eating and drinking. I hadn't eaten since Sat. morning. Been on IV the whole time. Couldn't keep water or ginger ale down, or pills...so why eat?

Add to all of this too, that I got my period during the first night of my admission to the facility. Seems like I get the bulk of my reactions during or right before my period. Dr. Vadas says there seems to be some sort of link between flare ups and our hormones.

I was so glad to get the hell out of there because I can take better care of myself.

And, my epi spray arrived today from the USA. Dr. Vadas wants me to have this but be careful about using it. He thinks we need to cut the response time down as much as possible.

So, I'm exhausted, home and happy to be alive.

I hope I never have another 9 anaphylactic reactions in a 5 day period EVER again.

Just Another Weekend with S.M.

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

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

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

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

My right knee was hurting like hell.

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

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

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

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

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

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

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.

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.

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.

Reaction Recovery

Not sure how it happened. Didn't touch anything. Tongue just got tingling and then the right half of it swelled (looked VERY odd), started to hurt when I breathed (especially that spot in my right lung), my lymph nodes under the earlobes started hurting, got light-headed and dizzy upon standing (so had to sit or lie down) and...I began feeling that 'impending doom' feeling.

I got a lecture from my Immunologist this past Monday about not using Epi when this kind of thing starts. "You don't know how it's going to go" she always tells me. Hmmm, that's ok for you to say [I think] because it's not YOU the doctors and nurses look at like you're an idiot when you get to Emerg. and your vitals are good. Tongue will still be slightly fat, but not HUGE (and, let's face it, they have NO idea what my tongue looks like when it's happy) and how is it possible that pain in breathing is only in this ONE spot in your right lung???? They use the "c" word when they look at me. "Crazy."

Or at least, that's how I feel.

So here I am today, post-Benadryl, and the rest of the arsenal of medications that I have. I didn't use Epi...it's SUCH an ordeal using that stuff. Mind you, maybe I'd feel better right now if I had? I don't feel right. My tongue is still swollen and now, being Day 2 - it hurts. Solid food is impossible today. I tried. It won't go down. Who wants food anyway? I've been vomiting and/or on the loo with diahrrea for three days. AND, I'm not sick. Oh, and that spot in my right lung hurts like heck. I won't even get into the details of the excruciating knee pain.

My Immunologist wants a second opinion from another Oncologist/Hematologist and that bone marrow test done. She says SM NEEDS that bone marrow testing done. SO, I'm now waiting to hear of my impending appt. with another doctor. Oh joy.

Ever feel like a rat, running around on a wheel?

ugh.