Wednesday, November 30, 2011
Wednesday - Midweek Throughts, Feelings & Observations
I had been feeling not so hot for a few days at the end of last week, as it was. But we had dinner plans with our dear friends Ingrid and Grant. Grant is really proud of his BBQ'ing prowess....the kind that takes HOURS to perfect and you see on those BBQ PIT MASTER tv shows. Not your rinky dinky slap a few burgers on the barby sort of thing you see in beer commercials. NO...this BBQing is SERIOUS business. I knew he'd got the ribs the night before, and made his own rub for them and was being UBER careful about the rub he was putting on them, becasue of my food allergies. His wife was being UBER careful about the side dishes with all my food senstivities and allergies, which is SOOOOOOOOOO amazing and wonderful SO, I wasn't about to cancel dinner on them because I felt a little 'off'.
About an hour before we were due there, my husband said to me "Honey, I really think we should call and bail, you don't look like you're up to this tonight."
"I've been medicating. I'll take more. We're going." I insisted. "I'll put makeup on...that's what it's for. No, we're going." Besides, the last time we'd gone for dinner there, we'd had SUCH a GREAT night over there, I was hoping we'd have another great night...
I never wear foundation or that short of heavy shit on my face, but went and put that on, powdered my face, mascara'd, eye shadowed, lipsticked and a blackshirt (in case I needed needles...white shirts show up the blood if they leak...), whipped up a couple of maple pecan pies to take and we headed out.
On route, I felt like I was going to chirp. We hadn't even't LOOKED at food yet and I was feeling barfy. I pulled the mirror down in the car, and sure enough, I was flushing (that's why I was itchy) and my tongue was a bit fat. Shit...So I got out my needle kits. Normally I don't use needles unless we are in an emergency but we were a few minutes away from arriving at their house and I wanted to make sure the drugs would be effective SOON, so I started drawing the needles up in the car. Antony found a safe place to pull in (Assiniboine Park) and a few needles later, we were ready to rucuss. Holy cow, you'd think I'd be over how much they hurt but I never am...they hurt. They make me wince. Sometimes I cry.
We arrived, all smiles.
And all was well for the first two hours. We ate dinner. I was careful to only eat a small amount of everything so as not to over burden my delicate system. I wanted to gorge. The ribs were AMAZING (we used Bradley's Maple Syrup from Orrvile...THE best Maple Syrup money can buy!!!!) and the baked squash/yam dish with crushed pecans on top, and the coleselaw.
So there we are two hours later, plahing Catan (board game), having coffee, when out of the blue, I start sneezing. I don't normally sneeze more than once but I couldn't stop. This progressed quite quickly to tongue tingling, to lip tingling to scratchy thoat to little hack hack hacks, to not being able to swallow my saliva to uncontrolled coughing to gagging to not being able to breathe.. My airway between the back of my throat and down my wind pipe to my lungs had closed in. My lungs hurt. While I was busy fumbling with my epi spray and TRYING to say "I'm fine; I'm ok" my husband reached for my bag and got an epi pen and just stabbed me.
Within seconds the relief in my throat was AMAZING. It was like the vice around my throat was released and the bear sitting on my chest had been rolled off. And...I could breathe.
At this point, we are supposed to call an ambulance and seek medical attention. IF this kind of thing happens to you, I am supposed to encourage you to do the same thing.
I did not.
We did not.
This is my 79th anaphylactic reaction and epi pen in the past 4 years. There are times when I neeed to go to the hospital and this was not one of them. I gave myself a benadryl injection and a steroid injection, and we waited for any signs of a rebound reaction....which did not happen. HAD there been one, absoltuely, we would have called for an ambulance.
Our friends had never seen anything like it. One minute I was fine. Then next I just wasn't. "Welcome to Mastocytosis" we laughed later. We continued to play Catan and I pretended to drink coffee. It's hard to hold a cup when you have epi shakes. Easy to roll the dice, mind you, with the shakes, but hard to hold a coffee cup.
Now, I am sequestered to the house for 5 days to get over the reaction because my body is fragile and any exposure can put me in hospital. I should be taking prednisone right now but I didn't seek medical attention, so I'm just doubling up on hydrocortisone instead.
I'm hardly eating anything though. I have NO appetite. I'm having to force myself to eat things to avoid hunger headaches, but I just can't bring myself to eat much. I've lost my love to eat food. I'm trying to be creative in kitchen for my family, and in the hopes that the deliciousness will inspire me to eat, but I usually just end up puking it up anyway, so WHAT's the point!?!?!? I'm sooooooooooooooo sick of puking.
Guess I can talk to Dr. GLew, my new family Doctor, when I see him on MOnday. He wants to go over the MASSIVE list of medications that I'm on right now and talk about what's what and why. I'll put that list up in a blogpost in the next day or so, so you can see how monstrous and insane it is. Not sure if he'll be able to help with puking thing because it's probably just Masto. or Addison's Disease but...holy Dinah, I barf a LOT. Doesn't even phase my family anymore, they are so used to it.
What I HAVE had the past two days, probably from ALL the steroids I've taken over the weekend, is feeling good. I know it's probably a false sense of wellness, from the steroids but I'll take it. It's nice NOT to be in so much pain you just want to crawl into a hole and die. It's nice to clean your house, visit with people and actually be able to FOCUS on what they are saying because you aren't in agony or needing to run to the washroom because soup is about to explode out of your butthole, or vomit out of your mouth. SO, the Christmas tree went up (early, I know...but my Motherinlaw is visiting for an early Christmas this week, from Ontario!!!) and I've been alert and present and feeling pretty normal. Hope it continues (fat chance...lol.)
Anyway, hopefully we use 1 or less epi pens for December.
Hope you're hanging in there, life is good and that you're being patient with yourself,
Fiona
Sunday, January 31, 2010
Stuck
Saturday, October 24, 2009
This Week
The strings on my yoga pants are longer today. My breasts look bigger to me, because the flub underneath them appears to be shrinking.
I've given up trying to make the few foods I can have, taste good. So, it's easier to pick at small bits of salmon, kamut bread with blueberry or blackberry or raspberry jam (raspberries are on the 'reactive' list but they've NEVER hurt me...), sauteed onions and garlic, squash, peas, green beans. Odd bit of chicken. Just to nourish myself.
What I am doing, is cooking for my family. Portioned for 3. Served with love. Prepared with love, gratitude and the desire to nourish the bodies of those I love.
I'm grateful for my Motherinlaw, who brings over baked treats. This way, I don't have torture myself with making them. Things like Brownies and cookies and muffins are difficult to make without wanting to 'cheat'. And 'cheating' makes my body hurt.
I should pick up some kamut and sourgham flour. These don't hurt me. I tried baking cookies with Quinoa and they tasted bitter and unrepentant. Even spiced with ginger, they were horrid.
I want to feel THIS good everyday. And my wish is for each of you to feel this good too. xoxoxo
Monday, October 12, 2009
Couch Potatoe
This isn't where I ordinarily spend my time. Ordinarily, I am running or puttering around cleaning up after my family. However, the past few days have been one of those 'not quite right' episodes. Nothing drastic has occurred but I feel like I'm on the edge of a big ugly reaction and am trying to keep the storm at bay. Tongue feels fat at the back (goes down with epi spray for a while and that comes back feeling all thick), it starts tingling (stops with epi spray), my gut has been on fire all evening tonight, felt like I was going to fall down (and didn't! Yah!), acid reflux (that I don't normally get), some lung pain and horrendous bone pain. I feel weak. I am exhausted, but can't sleep. I flushed several times today, the bright red ring around my nose and cheeks, leaving my center cheek bleach white. Very odd looking. And I'm itchy...the unscratchable itch. The itch that moves all over the body, under the skin & feels like it's inside too. Unscratchable.
I've taken all my meds, and as instructed, have doubled up on some. I feel sick to my stomach (haven't puked yet...yah!) and just feel 'not right'. We don't go to the hospital for 'not feeling right' unless I can't breathe; can't swallow or have passed out. Felt close to all those things today (and some yesterday) but it hasn't gotten out of control.
So what brought this all on?
Could've been the initial perfume on some woman in Tim Hortons (where I'm usually ok for short periods of time). I got itchy tongue, all over body itching, running nose and eyes within seconds of her scent getting up my nose. I was standing in line. I used my epi spray as discreetly as I could. I got up to the counter to order and both nostrils literally let go. Blood. Haven't been feeling right since. Have had a bunch of nosebleeds like this, spontaneously, since. This'll teach me to say out loud that I've been well for over 5 weeks now. Wellish.
I mentioned before this combination low histamine and latex cross over foods diet has been improving a number of things. For one, I'm not puking near as much as I have been this past 2 years. I'm experiencing less bloating and gastric distress. Less bone pain. Clearer mind function. No full on anaphylaxis. My tongue has even reached normalcy. It was like being reintroduced to an old friend: "Hi Tongue, wow you look great!" Not today though. It's swollen, cracked, has the little red sores that appear on it when I'm reacting, and...is fat.
My good friend Kim, in Winnipeg, sent me a great book recently called The Maker's Diet. The author has cured, yes cured, himself of Crohn's Disease. I have a good friend locally with this disease so I've seen how crap it is. My little brother has it too...he's managed to improve his symptoms with a combination diet and Naturopathic care over the years. The book is really cool. The author, who is Christian, has gone back to the Bible seeking guidance, and examples, of foods that our Biblical forefathers ate. They lived much longer lives than we do. And not living in our toxic world, obviously weren't aggravated by the side effects in our quest for 'convenience'. I'm a fair chunk of the way in. Some of the stuff outlined in the book isn't rocket science...to those of us who are, have been, or beginning to be chronically 'ill'. While everyone would benefit from eating this way and living the ways outlined in the book, it's not for everyone. Some of us feel we can't 'give up' our 'convenience'. However, for those of us who've HAD to give up that 'convenience', there's some good advice to be heeded inside the covers of this book. So, I'm trying it. I've got nothing to lose. I am unable to eat a bunch of stuff in the 'recommended' section due to the latex cross over and low histamine thingy but (perhaps not so surprisingly) most of the 'do not touch' lists are foods and things I need to avoid regardless.
There are some things in this book that I didn't know about till now. HSO's, little organisms found in dirt and such can be beneficial to all human beings. I have to be careful with mold spores and such but he suggests gardening as a good way to get your fill of HSO's.
So, what have I changed this past week or so, since getting the book?
1) I'm combining bentonite clay (in liquid form...I tried the dried stuff before and could never get the ratio right enough to be able to palate it) with psyllium (ok, orange flavoured Metameucil...it's what I have and we have to be careful about money right now.) It's gently removing any residual mercury or other heavy metal toxicity I may have left floating around in this body. (Mercury, is another LOOOOOONG story in my 'getting sick' journey...for another day.) The psyllium is removing the sludge from my intestines and colon. It's working. And before you suggest it, I don't think this is aggravating my symptoms this episode. It was definately that woman's perfume that triggered me....if we can pinpoint ONE thing. I feel no discomfort with this cleansing concoction. Drink it on an empty tummy at night before bed...cleaned out and on the loo by morning. I'm going to keep doing it. I feel improvement in the digestive area. Once my batteries are charged and changed on my scales, I'll see if my 'feeling' lighter has translated to physical lightness.
2) Am no longer consuming pig products. At all. Ironically, the pigs we've grown on our farm this past summer, that are almost ready to go to 'get dressed' (Nov. 25th) will not be eaten by me. Perhaps for the rest of the world this is ok, but for 'sick' people, it's one of the first foods you should eliminate from your diet. They are 'bottom feeders' (like lobster, crabs, shrimp, clams and oysters.) The book's stand on this is that 'bottom feeders' are "unclean" (garbage in; garbage out) and that the Bible clearly ascertains that man shall not eat pig. I've asked some Christians about this (who eat pig) and they tell me it's more 'custom' than anything; they tell me that back then there were no refrigerators to keep the meat from rotting and it rotted quicker than say a chicken; they tell me it's a guideline...not necessarily to be taken to heart. Interesting that other passages or instructions are taken to heart, but not this instruction. Where do you draw the line? Well this book says you draw it where God says so. Do not eat pig. If you're reading this, and you're Christian, I'd be very interested to hear your take on this subjecct.
3) Chew your food really slowly, with intent and permit your body to have the time it needs to prepare the digestive enzymes that will help digest what you shovel in. I'm doing this...chewing 30-70 times per mouthful...and what I've discovered is, I can't eat as much as I used to. Don't need to.
4) Get sleep. (Oh, says I, on the computer at 12:30 pm)...for every hour before midnight that you get to bed, it's like having an additional 4 hours of real sleep. Apparently. I'm up right now because I had a flare up and I have trouble sleeping on these nights. Ergo, I'm on the couch. I also pee a lot more when I flare up, so I'm nearer to the loo. But, I do need to get going to bed momentarily.
That's as far as I am. Lots more in the book to talk about. And if I find any other useful hints, directions and such, I will post them. I'm already doing a bunch of other reccommendations (cutting caffeine; relaxing, etc.) but I'm thinking there must be something IN this approach. If God has truly offered instructions and guidelines for living healthy and long, then we might want to heed His advice? Interestingly, The Qu'Ran's guidelines aren't that much different. Nor are Orthodox Jews'. So...maybe it's true that the pigs function on earth, much like the shrimp or lobsters fucntion, is to clean up and not be eaten? For me, for now, this 'garbage in/garbage out' approach makes some sense...and I often throw pig back when I eat it, so I don't eat it much anyway. I know that our pigs have been fed well, but the stuff you're buying at the supermarket has come from a feedlot where ALL the waste goes, so that's what you're eating. I wouldn't feel good about that, no matter how it's smoked or prepared. So as much as I love a bacon sarney/sandwich, it's no longer a choice for me.
Must get some needed sleep now. I hope you each are well, happy and loving your lives. And if you're Canadian, I hope you've had a fabulous Thanksgiving weekend this past weekend. I'd like to thank my Mother in Law for a gorgeous turkey dinner yesterday. It looked amazing. She makes it look so easy...another thing I aspire to do well in this lifetime. Happy Thanksgiving. We have a lot to be grateful for.
xooxo

Monday, August 3, 2009
shocking
am weak.
Wednesday, July 29, 2009
Wallowing Wednesday
That's all I have to say on the subject right now.
[Place wry smile here.]
Sunday, July 19, 2009
Confession
Perhaps because this whole Systemic Masto. thing became a LOT more real to me this week, in the wake of a negative c-kit mutation in my bone marrow biopsy and then being told that this negative test does NOT mean I do not have this incurable and ever so frustrating disease. The news that we just sort of have to wait and see which of my vital organs starts shutting down first so that we can tell WHERE these funky mast cells are lurking, hit me pretty hard. Plus, having another very real and ugly reaction AT the hospital, and the fallout from that at the same time...it's been a bit sobering, to say the least.
This whole sense of limbo has shifted in some ways, and not in others.
I sort of mostly do as I'm told to, by these doctors.
Sort of.
Confession: in the four days before I went to St. Michael's hospital for the bmb test results I looked into my bottle of Cromolyn/Gastrocom, that costs $380.00 per month and thought 'is this stuff really making a difference?' and thought, 'we can't afford this' and thought, 'if this is all in my head and I'm just a hypochondriac then I don't really need this'. It doesn't take a genius to figure out that our drug plan, that caps us off at $5000.00 per calendar year is going to say 'no' to the prescriptions at some point in the next coming months. Gastrocom is only ONE of NINE medications that I take daily. So, I did, what some other masto patients do, and cut my four doses per day down to three, then two...and that's about as far as I can stretch it; make it last longer; cost less. There's a price to pay for this cutting though: I flush; have horrendous gut pain, puffy tongue, I itch, and flare up at the hint of an allergen. Turns out that I can't cut down this much at all. I guess Dr. Vadas is right about having to take it ON TIME, PROPERLY...or else, someone's perfume can set you right off.
My past 12 weeks of no hospitalization/emergency crew reactions had me thinking that I was actually immune to this shit. I was starting to believe I'm normal. I was starting to believe I'm ok. I was starting to believe that I don't really need to take all this medication; stay in my house/on my property; starting to believe that somehow, on some level, I just want to be a social dropout and that I'm somehow creating this little bit of 'sick' reality for myself. I was starting to believe that if I just WISH/THINK I'm ok, I will be.
Wrong.
I've mentioned that I'm not the only Masto patient that does this. However, the fallout from this not taking our medicine's properly stupidity is just that...stupidity. It's unecessary. And, it's foolhardy. There is a possibility that HAD I been taking my meds properly, I might not have had such a massive reaction to that woman's perfume. Having said this harshness, I am aware of the internal struggles that we have in coming to terms with this weird disease and its impact on our lives. So this juggling or roller coaster ride is pretty normal, despite being not very healthy or ok. The whole not knowing FOR SURE that you have Masto though and whether or not these drugs are actually helping you or not (for real???) is always present.
I've done this before. And you think I would've learned. Everytime I do this (forget my meds; get slack about the meds; think I don't REALLY need the meds; get into my pocket of medicinal denial and tell myself this is ALL in my head and I am nothing but a big loser for ending up where I am, healthwise, UGH...) I get into trouble. I have a HUGE reaction. I usually end up in hospital. This toll is a large price to pay for my own stupidity and denial. Not just for me, physically. There is my husband, children, family & friends to consider too. This messes with everyone's schedules, and welfare, emotions and concern for me and concern for my children and animals.
So, lots of thought about WHY I do this, has crossed over and over the gray and white matter that fills my skull in the past few recovery days...it's because I want this all to go away and not exist. And, I want to believe that I don't need these drugs. And I don't want to be dependent on medicines to keep me safe and alive and well. Especially Western/Allopathic medicines, that ALWAYS have some kind of side effect that'll catch up with you one day. And, because my diagnosis seems so defined one day and not the next...I don't know whether I'm coming, going, been or gone.
Dr. Vadas is right. KNOWING is better, than not knowing. We were all hoping the bmb would reveal something other than limbo. But here we are...swinging in and out of possibilities, and the fact that the 'markers' for Systemic Mastocystosis still have a long way to go. Hematology at St. Michael's Hospital seems to be under the opinion that the bmb just reveals SM's presence IN your bone marrow and blood, and only that. It can and could be lurking elsewhere. Ask Dawn, of Breaking of Dawn Blog...turns out that hers has been in her stomach this whole time. (You can link to to her story over there on the right...)
So, where is mine?
I had to use Epi spray twice again yesterday to stave off serious fallout from paint fumes at the parental's home (my fault, I shouldn't have gone down to see what Niall, my brotherlinlaw, was creating...) and from some other unknown while we were out grocery shopping. I obviously can't go into stores, despite my unwillingness to accept that I can no longer fulfill this vital family function in our home anymore. There are a few shops that are the exception, thankfully. Mostly wholistic, whole food and organic/natural shops. I'm not sure about what is an ok amount of Epi spray to be taking, as I can't find this info anywhere...so my GP/Family doctor is on this and trying to find out. He couldn't find it on his palm pilot either. I've had Epi spray almost every day for the past two weeks. This can't be good. And, it's a sign that some things need to shift. Taking emergency medicine daily isn't ok.
So, the confession is this: I didn't take my meds properly; I've been in denial AGAIN; I've been stupid AGAIN and there is a price to pay for this. And, it's not ok. So, it has to stop.
Friday, July 17, 2009
yesterday
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.
************************************************
Wednesday, June 3, 2009
Yes it is...Yes, yes it is & Bone Marrow Biopsy
They are in agreement that another bone marrow biospy is needed to do the c-kit mutation testing. This is sort of the FINAL diagnostic test they have for SM right now. While a final diagnosis won't change the course of treatment that they have me on currently, it will offer some peace of mind that no-one's missed anything and that THIS is what is going on with the insanity that has become my body. I haven't mentioned much that they are also testing me for some other disease that is so rare that it doesn't really have a name but is referred to with a bunch of numbers and letters only. This disease is even rarer than Systemic Mastocytosis BUT is curable. No-one has mentioned what the cure is, but apparently it's curable.
If my c-kit mutation test reveals I DO have Systemic Mastocytosis then, the prognosis for cure is grim. However, life IS possible even in the face of feeling like absolute crap. Just have to avoid 'shocking' and anaphylaxis at all costs...easier said than done with triggers like latex, dust, dust mites (those things are EVERYWHERE!!!!), massive list of food that is growing steadily (all the tasty stuff too!), pain, hot, cold, extremes or quick changes in temperature, medications, perfumes, cleaners (we're a Dr. Bronner's Hemp soap, hydrogen peroxide, tea tree oil, lemon, vinegar and water household now), some animals and some silicone products., etc. Especially "etc.". The list is all together too big to note here right now.
If my c-kit mutation test reveals I DON'T have Systemic Mastocytosis, there is a fear that I have some "orphan" disease of my own...because SOMETHING isn't right. I've asked if it's possible that this is all in my head. Apparently, it's not. Not with what my body has been through and experiences. (So,...I'm NOT crazy?!?!!??!)
If my bone marrow biopsy reveals I have this other disease, there's a cure.
So, that's where I was at when we headed south to Toronto yesterday to the pre-op department at St. Michael's hospital. The real meal deal here is that there is a TEAM of doctors working together to help me at this hospital.
Dr. Chen opened the door with my file in hand, introduced himself and said he had read the lengthy file on me, and sat down. He looked at me with pity. Nice pity, if you know what I mean. And then told me that Systemic Mastocytosis is "life-changing". Er....yes, yes it is. I was confused. This doctor KNOWS what my life/our life has become.?! Different. Changed. Altered. Other. Uncomfortable. Painful. "You know Masto?" I asked, confused. Was I really not going to have to try and explain this disease to this doctor and hope that he would believe me that he really needs to call my Immunologist and speak to him about what's going on with me? "Horrendous disease," he quipped, "Life-changing." Er....yes, yes it is.
"I thought I was here to test to see if I have this disease, not that I have it." I replied.
He said he's not an Immunologist or a Hematologist but he's read the file, chances are good I will test positive but we'll see and that Dr. Hicks (it notes in the file) has already spoken to me about this. Yes, yes she has. He told me that Dr. Hicks is a wonderful doctor and she knows what she is doing. I agreed. He said her notes were pretty strong and we need to behave as IF I HAVE Systemic Mastocytosis for this test and anaesthetic because, chances are good this is what ails me,. So precautions, markers and preparations need to be made because this is rare, and serious. Yes, yes it is.
He then said it's an insane disease because it's one disease where getting upset can actually kill a person because sufficiently triggered, mast cells behave in these insane ways in a person with Systemic Mastocytosis. Add this, he went on, that for me, latex is a massive trigger, so that combined with getting stressed or upset can be detrimental in an O.R. SO, they are having me first thing in the morning and will prep the room without latex and let it sit and 'clean' overnight. First patient of the day in that room. SO, their job is to make me as comfortable as possible; I am not to be stoic and am not to permit myself to be in pain (they can help me) because pain is a trigger as the body has it's own stress-response to pain and THAT is massive in and of itself. And, bone marrow biopsies are painful. No two ways about it. Unlike other people who've had or can have lidocaine or local freezing to assist with the perception of that pain, I cannot. All terrible triggers for me. And, have hurt me/created reaction in me before. So, he said sedation and pain management post procedure were crucial to pulling through this well and without incident. At the end of the day, we want no incidence. Agreed.
It hadn't occurred to me that pain IS a trigger.
He said he had a good idea about what medications we could use and not use to sedate me but would check with Dr. Hicks/Dr. Vadas. I told him that Dr. Vadas has a list of medications not tolerated well by Masto. patients. The list comes from Michigan and Dr. Cem Atkin's office. I coudn't find my copy of it (think it might have got left with my Emerg. Room file or Patient File when I was in my local hospital last month for 4 days (well 6 days, if you count the two and half days in and out of Emerg.) So I pulled from the Mastocytosis Society in the USA's website Dr. Maria Castell's Emerg. Protocol for Systemic Mastocytosis and/or Mast Cell Disease and the printout on Anaesthetic on the same webpage. He asked if he could keep them. I said I'd brought them for him. The pages noted their sources. I was relieved he wanted them. He also told me that there's a good chance he won't be my actual Aneasthetist next Tuesday, June 9th, when I have this bone marrow biopsy done, BUT would write a detailed letter outlining what needs to happen with this/with me. He trusts his colleagues implicitly, he said.
It was so nice NOT to have to convince a doctor of the validity of this disease.
I feel so incredibly lucky to be living in Ontario right now, with this care team. St. Michael's Hospital and the University of Toronto have every right to be proud of three of their doctor's. They are doing their best for me. And, Systemic Mastocytosis. I appreciate it.
I was really worried about having this bone marrow biopsy because of what happened with the last one, in October, in Parry Sound. I've written about it in a previous post, so I'll spare you the details. But, I was not looking forward to this test without freezing or painkillers. Wasn't actually sure I would be able to go through with it. I don't say that about much in my life. Never have. But THAT was doing my head in. Dr. Hicks says it would be "inhummane" to do a bone marrow biopsy like that. Dr. Chen said he once had a patient, with Systemic Mastocytosis say that a bone marrow biopsy was like the torture machine on the movie The Princess Bride when Weslely is being, well, tortured and he lets out that primal scream that is the scream to end all screams because it's the cry of man who's lost his true love...THAT is the kind of pain a bone marrow biopsy without freezing, sedation or painkillers is. And even with sedation, Dr. Chen said it would hurt coming out of anaesthetic because there is no freezing in the area. He said that drawing out the bone marrow is like that Princess Bride scream because it's the "core of a person", just like the heart...to touch those things is to "mortally touch or wound a person" and it is excrutiating. So, it's going to hurt real bad afterwards so, I'm not to be stoic. No body or emotional stress over pain. He would order epi, benadryl, ranitidine and steroids on order for post procedure too. He knew I would need an iv line for all of that going in. I am to take my ketotifen, cromylyn and meds with the tiniest bit of water and let them do the rest.
So...that's the deal. I had intially thought going all the way down to Toronto for a pre-op would be a big waste of time and an emotional drain. It was anything BUT that. The nurses who did my physical were gentle, awesome and incredible (had to get nasal and anal swabs because I've been admitted to a Canadian hospital in the past year...swine & avian flu and SARS...thank you. The nurse gave me the swab and said I could go to the loo and do it myself if I wanted. Yes please. So no embarassment, discomfort or lack of privacy. Thank you.) I walked out of there with a sense of calm and trust. My husband remarked, "that went well." Yes it did. Aside from the anal swab. Yes, it did. Worth the trip.
Thursday, May 28, 2009
Perfect.
Having said all that, my desk has always been a mess. A disaster zone. Chaos. Still is. Um, not perfect.
My friend Drea says that I've "...been through fucking hell this past year..."
My Mum tells me that Jehovah has given me this illness because my shoulders are big enough to carry it.
My Father tells me he's worried sick about me. And nearly always interjects that it's Ontario that is making me sick, because this province is toxic. You can't live between Toronto ('Smogville'), Hamilton ('Steel Town') and Sudbury ('the land of Nickels') and not have the air and water affect you. The natural resources are sick. Ergo, I'm sick.
My Husband tells me that I need to make the necessary adjustments to relearn to live my life.
My Immunologist tells me that I need to make the necessary adjustments to relearn to live my life.
Drea points out that I no longer have to work, live on 128 acres of land in the middle of nowhere, can take my kids swimming for free in the lake ANY time I want to (weather permitting, of course), that I have all day to myself, that I have a man that loves me, two gorgeous kids, family and friends that love me and whom I love, and don't have to answer to anyone. Aside from the whole illness thing, she quips, your life is perfect. Drea does intellectual stand-up comedy: Spoken Word. She's brilliant at it. I'm a fan. Perfect.
A different person would take the time that I now have, sit on their arse on the couch and watch tv all day, while nibbling every so often and going for a pee. I have a great deal of trouble doing this, depsite wanting to sometimes. That drive for perfection speaks to me really loud most of the time. "WASTING TIME!!!!!! DO SOMETHING!!!!!! USE YOUR TIME WISELY!!!!!!!!", etc. Some of you may be familiar with the "etc.s" too.
I'm not sure where this drive comes from.
What I do know is that sitting too long on one side of the fence isn't good for you. Nor is the polar opposite. Seems to me, that some sort of balance needs to be present.
You can't be this driven and healthy too. Ergo I'm not.
I'm not saying that the insanity that I've called my life for the best part of the past 20 years is responsible for reaping some serious physical and emotional side-effects. But it can't have helped.
My husband has said to me on more than one occaision, "Nothing is ever good enough for you. You're never happy." In various tones and circumstances. THIS is usually what our arguments are about. When we have them, which, thankfully, isn't very often, it usually boils down to that. Once every 2 or 3 years I am given a sobering dose of someone else's reality and told that nothing he ever does for me is good enough. Until this past year. He's easily said it to me 7 times. In one year! I can't be responsible for why he's driven to have a woman in his life that pushes these buttons for him but I can be responsible for not being that person, because it's not healthy or balanced or ok. And, I can be responsible for not pushing myself to the brink of death 'proving' myself to the world. Quite frankly, it's not that interesting. Nor am I. Who cares if I prove anything? No-one but me. Perhaps if I give myself permission to relax and appreciate things as they are, I can enjoy the fruits of my labour when I take on projects or challenges...instead of rushing and pushing through them so they are over and I move onto the next thing. OR WORSE, I throw myself so hard at something, that I burn out and never finish it. How many unfinished projects or 'things' do we human beings have?? Don't get me started on the guilt associated with not finishing things...lol.
What has happened is, despite my new limitations, that I have continued to try and push forward, in the same way that's always worked for me before. Really hard. And am no longer reaching my destinations...not even close. Ergo, there is a sense of failure.
This sense of failure is all too familiar to me. It's not just reared its head in the past year or so. Systemic Mastocytosis and a life threatening latex allergy haven't created this. I can't remember a day as a child, or teen, or young adult or adult that I didn't feel like a total failure. While every one was sharing accolades with me, praising and enjoying my work, stories, food, hospitality, singing, teaching, listening, sharing, theatre, children, marriage, fire department, yoga, running, fraternizing, whatever...I was sure it was never good enough, ok, or worthwhile. Or that I was. (The guilt over not receiving the love, praise and offerings of those people kind enough to share their time with me is another discussion altogether...) I never savoured a moment of perfection, in those moments being perfect as they were.
If I may be permitted to observe my own Self for a moment...this is pretty sad. Not to mention, unecessary.
It's even sadder that it's taken my world becoming infinately smaller, through illness, for my appreciation and love of my Self to begin growing. That might sound a bit new agey, but there isn't really another way to explain it.
Tonight, despite the downpour soaking my farm and my hair, I looked around me and was aware that my life is already perfect. I just haven't taken the time to "smell the roses" or Be right where I am, as I am. All this time I've spent searching, driving, proving, and trying to be happy, I just needed to BE happy. "Do or not do, there is no try."...says Yoda. It really IS as simple as a CHOICE. And I haven't always chosen this.
The need to rush to the next minute or moment or thing to do went "POOF!" and here I am, findng that time (an illusion) has slowed right down to a pace that feels good. Perfect. Why didn't I let this perception in, years ago? Hmmm, chances are good that I wouldn't have recognized it. How would I know NOT to speak unkindly to myself, if I had no idea that I was speaking unkindly to myself (and possibly others?) Thank God we have the ability to learn.
So that list of unrealistic expectations that I have of my Self needs to be rewritten or thrown out. Imperfect perfection is what I am, and that feels good. (Do I get to thank Adam and Eve here?)
If anaphylaxis, Systemic Mastocytosis and freaked out cells have brought me to this place, then I am grateful for it. I wouldn't wish it on anyone. And, I wish I didn't react to the world we live in the way that I am BUT, I've arrived at "I'm alright" contentment...so thanks.
Sunday, April 12, 2009
Dawn and Gavin
xoxoxoxo
Fiona
Friday, April 10, 2009
Talking
I do believe that thoughts become action. And, I have had a LOT of conversations with myself, grappling with this very issue: am I making myself ill? My Immunologist says I'm not. And, he says I'm not imagining this...this is real.
So, I've been busy thinking about my garden, tending to my new chickens, planning the produce for the season ahead, planting my plugs full of flowers and seeds that need to be started indoors, writing letters to people I love and care about, playing WordPath/PathWord on Facebook (careful...it's addictive!) and telling myself how much I love me.
However, the reality is this...I've been struggling for about 4 days, on and off, with what my husband is now calling "masto symptoms"...flushing, itching, tongue swelling, headache, insomnia, bone pain, diahrrhea, nausea, puking and this new one...face swelling. I woke up this morning with a round, puffy, edema-like face. My cheekbones weren't seeable and I looked liked I'd gained 30 lbs around the face overnight. Don't think about it, I told myself...or you'll make it worse. So, we all trekked over to Barb's Sugar Bush for maple syrup production...with all the snow this past week and freezing, the sap was running full hog today. We stoked up the fire pans. I had a coughing fit after hauling 9 buckets full of sap. My husband told me to take it easy and I was relegated to sap drainage into the big barrels (to then be scooped into the evaporator pans). Many hands make light work. So there were neighbours and Barb's cousin helping out. It was fun. I puked in the bush. Fatigue washed over me. But, I focused on the gorgeous blue sky, the sap at hand and the Bengali Spiced Tea that was brought out from the house. It was a perfect morning. Aside from not feeling so hot. Even Barb said I didn't look right.
We came home. I puked some more. I had a raging headache...the tylenol and subsequent percoset that I had taken, took the edge off, but it was present. Migraine? Took a Zomig. Laid down. Woke up to a fat tongue that I was having trouble speaking with. I showed Antony. He said he thought we should use an Epi because it was huge. I agreed. My face felt puffy, fat, big, huge...looked in the mirror...I'd sprouted an extra chin! I was breathing fine though. But, I didn't feel right and STILL had this unbelievable headache. Didn't feel like a 'reaction' per se.
Reluctantly, I used an Epi pen.
Tongue relief was almost instant. Holy dinah...I didn't realize HOW bad I was feeling until it began subsiding. I could feel my face going down.
Antony told me to get under the covers. I've been so cold lately. Body temp has been between 33.8 and 34.1 C, which is sort of in the 92/93F range. And, I always get cold with Epi. The shakes weren't as bad as they usually are....possibly because we were very relaxed about the whole thing. And here I am, on the futon in the family room, under blankets, surrounded by my books, seeds, farming journal and my laptop. Feeling tonnes better. But not completely ok.
I'm supposed to go to Emerg. when I've used an Epi. But, what are they going to do for me, that I can't do here?
I've since taken some Benadryl and a Prednisone and am about to take Ketotifen, Gastrocom and Ranitidine. I should be fine.
So, while trying NOT to think about it all, I STILL flared up.
I am not posting on Facebook how ill I feel or how ill I've been feeling because...I'm sure everyone is sick of hearing about it. God knows, I'm sick of writing about it. However, this is my Blog...and I can write what I want here. If not for myself, then for others with Masto. who are going through this same insanity...
Antony says today (and the past few days) has definitely been Masto and not 'reaction' so much. I am inclined to agree.
The Epi shakes have now worn off, and I'm feeling all the better for having 'shocked' the system. I might even be able to eat something now? Think I'll start with a cup of tea though.
I've begun keeping a handwritten journal of flare ups and the manifestations. No use mumbling on about sort of this, and sort of that, when I see Dr. Vadas on Thursday. I'm back to Toronto to see him and get another bone marrow biopsy for the c-kit mutation.
Forward ho...
Wednesday, April 1, 2009
Post Reaction and a trip to see my Immunologist
Update
So I'm on the usual post-reaction protocol and I'm feeling horrid.
The horrid nurse and I had a 'healing' moment yesterday...which I'll write about later when I'm home from seeing Dr. Vadas, my Toronto Immunologist and Canada's Systemic Mastocytosis doctor. Hopefully we can avoid a rebound on route to Toronto and IN his hospital. I reacted a bit last time I was there.
Anyway, I'll check in later. Toronto is a good three hours from here. Downtown Toronto is 4 or 5, depending on traffic.
Sunday, March 29, 2009
Gavin & other important friends
My friend Dawn, of Breaking of Dawn Blog, has had a rough past week or so with colitis and some Masto-related hell. I thought she was being unusually quiet. I wish I could take her health crap away so that she could go about living and enjoying her life with Marc and her gorgeous twin girls. She's been in hospital with it. Which, in the USA, costs an arm and a leg too. I seriously think we need to get some funding together for Masto folks, to help those in countries where trips to the hospital are paid out of pocket and seriously hamper a family's ability to function financially. This whole mastocytosis world means multiple trips to the hospital...wish I could say, even annunally, but for many of us, it's monthly or weekly. I've digressed. What I want to say is, Dawn, I hope you are healing from the digestive hell, that you are resting and that you are being kind to yourself. This disease is not your fault, it can't be helped when our body flares up and...please, just envelope yourself in as much love and light as possible. Big hugs.
I've had an off week. Not as turbulent as it can be or could be or has been. I've had 3 days of pretty serious insomnia due, I think, to bone pain and digestive disturbances. I've had 4 days of serious digestive issues...it seems like whatever I feed myself, churns, burns, refluxes, bloats, gas pains, diahrrea's or constipates (I fluctuate, hourly, between the two...NO fun) and just plain ole hurts my tummy. Sort of like a headache in my tummy, as my daughter once told me when she was four. I'm farting REALLY painful, uncomfortable farts right now, as I write this. Ugh...WHAT do I need to do!?!?!? I've ordered some Macrobiotic Diet books from Amazon. Perhaps eating THIS way will help. I'm having serious problems digesting meat. Huge issues. I tried lamb last night, only a small amount, and I had a night of digestive distress and am still hurting this morning. I guess it could've been the other foods, but I'm not sure what. Oh, maybe that cheesecake slice (we had friends over for dinner, so my hubby went and got a nice mixed cheesecake for afters). Hmmm....in retrospect, now that I mention it, THAT was stupid. I know dairy and I don't do well together.
My weight continues to burden me. Just feel myself getting heavier and heavier. Dawn and I have spoken to, and about, this. I'm wondering if the Ranitidine, in it's lowering the GI stomach juices, is interfering with our ability to digest foods? Ergo, our absorption continues to suck (we have enough issues with this, as is) AND our bodies are perhaps, not able to process our foods efficiently, ergo gets stored as fat? I might ask my Immunologist about this when I see him on Wednesday. Wow...where did 6 weeks go? Anyway, I've digressed again...my knees are on the mend, so I'm hoping to add some cardio (gently) to my week coming up to get my body limber and moving again. Yoga is definitely ON the plate too. Gotta move.
I've been flaring up, flush-wise, too for the past 4 days. I think part of my problem was that I went to WalMart and Sobey's with my friend Barb the other day (she drove) and, while I took a pile of drugs to offset any reactions in stores (which, unfortunately, has happened multiple times) and while, I got through my shopping quickly and without incident, when I got home, I flared up. And, I've been dealing with it since. Apparently proximity to allergen filled zones STILL affects me, even if the drugs are working WHILE I'm in the store. My body is still taking IN the allergens and dealing with them when the drugs wear off. UGH!!! I wouldn't have gone at all, except my husband had a digestive flu for 4 days last week. I would think I had this too, except that I get all the other masto-crap with mine. SO....not sure if it's a bit of both?
Anyway, much love and warmth to each of you in the week ahead. Especially for Dawn and her family; Gavin and his family and if it's ok to ask...for me, and my family too.
Saturday, March 28, 2009
Pray for Gavin
Come on little guy, you can get through this!!!!
Big love, hugs and prayers to you and your family, Carla. Gavin is so fortunate to have you in his court.
xoxooxxo
Fiona
Friday, March 27, 2009
Healthy Nails
http://healthandfitness.sympatico.msn.ca/News/ContentPosting?newsitemid=1666403032&feedname=CP-HEALTH&show=False&number=0&showbyline=True&subtitle=&detect=&abc=abc&date=False&paginationenabled=false
I would like to add that tongues, eyes, poo, pee and skin are other valuable measuring tools. We don't look at tongues and eyes too much this way, but should. My tongue speaks measures about Systemic Mastocytosis flareups and anaphylaxis for me. I am now able to gauge my own personal recovery, and where I am at...OR am beginning to be able to predict when a serious reaction is around the corner (and can take measures to offset it.)
Here is that article in full, so you don't have to go to link:
What the nails know: Fingernails can provide early warning of health problems
Helen Branswell,Medical Reporter, THE CANADIAN PRESS
TORONTO - Fortune tellers say they can divine a person's destiny by reading the lines in the palm of the hand. But when it comes to discerning the state of one's health, turning the hand over is far more illuminating.
Fingernails can reveal an amazing amount about a person's health, medical experts say, with a surprising number of conditions manifesting themselves with changes in the shape, colour or overall state of the nails.
"It may be the first sign, it may be the herald sign of ... an internal disease," says Dr. Yves Poulin, a Quebec City dermatologist and president-elect of the Canadian Dermatology Association.
Lung disorders, nasal polyps, anemia, inflammatory bowel syndrome and liver diseases can provoke changes in the fingernails.
In some cases those alterations can prompt people to seek medical attention, in the process bringing to light previously undiagnosed conditions. In others, the state of a patient's nails will help a physician clarify what is at play.
"For us, it helps to make the correct diagnosis to look at the nail," Poulin says.
The bed of the fingernails of healthy individuals should be a light pink. Nail beds that are white may suggest anemia - a red blood cell deficiency which itself can be a symptom of other, sometimes serious, diseases. When the nails themselves grow opaque and white, it can be a sign of liver disease.
White nails with a dark band at the tip - a condition called Terry's nails - can be a sign of aging but could also signal congestive heart failure, diabetes or liver disease, according to a photo slide show on fingernail conditions on the Mayo Clinic website. (http://www.mayoclinic.com/health/nails/WO00055)
Kidney problems are suspected with a condition known as half-and-half nail, in which the lower part of the nail bed is white but a portion towards the tip of the nail is pink.
Bluish nails can signal a lack of oxygen, a sign a person might be suffering from one of a number of lung conditions. Green nails can be caused by infection with Pseudomonas aeruginosa, a bacterium which is common in the environment. Antibiotics can clear up this condition.
Poulin says respiratory tract problems - such as nasal polyps and chronic sinusitis - can trigger yellow nail syndrome, which he describes as rare. It can be corrected in some cases, depending on the cause.
"I had a guy in recently, he was an attorney, he was 40 and he had yellow nails on all his nails. And he had a nose surgery and it all went away," Poulin says.
Strangely shaped or marked nails are also indicative of a variety of conditions.
Thickened, misshapen and cloudy nails - sometimes on the fingers, but more often on the toes - are generally a sign of infection with a fungus. Called onychomycosis, the condition is unsightly and makes the nails difficult to trim and maintain.
Onychomycosis can and should be treated, Poulin says, and the earlier the better. The longer the problem festers, the harder it is to treat, he says.
And while thickened toe nails may be merely an esthetic problem for a 60-year-old, when that person is 80 and diabetic, toenails that can't be trimmed can trigger infections in the skin around the nail bed, erode foot health and threaten mobility.
"It may be an open door for cellulitis, for infections of the skin, in diabetic people," Poulin says. "(But) this is often neglected. People don't look too much at their toenails."
A brown or black streak or dot under a nail that persists can be skin cancer - melanoma, which can be deadly if it isn't caught early. And if there is no evident reason for the change in pigmentation, it should be checked out, says Dr. Mark Davis, a dermatologist at the Mayo Clinic's Rochester, Minn., campus.
"If patients can remember some trauma to their nail - that they actually have a reason for getting blood under their nail and it's usually painful - then it's nothing to be worried about," Davis says.
"But if somebody develops a new pigmentation on their nail, just like a new mole on your skin, it's best to have a dermatologist look at it and make the judgment as to whether it could be a melanoma or whether it's just a mole. And sometimes that can be quite difficult even for the dermatologist to decide."
Melanomas under the nail aren't common, but they do occur. But because people don't necessarily know of the possibility, such melanomas can go undetected, threatening chances of survival.
"People come very late with melanoma of the nail plate," says Poulin. "They have a black streak in the nail for years."
Someone who has horizontal groves across all their fingernails has experienced an illness that has interrupted the growth of the nails. The condition, called Beau's lines, is associated with uncontrolled diabetes, circulatory diseases or illnesses associated with high fever, the Mayo Clinic says.
While nail changes can signal something is going on with a person's health, sometimes the message they send isn't specific to a particular disease.
"For example, when you see clubbing of the nails, there's like 20 different things that can be associated with that," Davis says. He adds the warning, though, that "if that happens and it's new, it can be a sign of lung cancer."
The term clubbing is used to describe the swelling or enlarging of the tips of the fingers, with the nails curving downwards over the tip. While some people are born with clubbing, if it develops later on it can be a symptom of lung disease, congenital heart disorders, inflammatory bowel disease or liver problems.
Spoon nails, on the other hand, come about when the fingernails soften and curl inward from the sides, creating a concave surface. Also known as koilonychia, spoon nails can be a sign of iron-deficiency anemia.
Davis suggests paying attention to, but not fretting unduly, over changes to fingernails.
"If they notice a change in their nails, I think it's reasonable to check on it, but not to get overly alarmed about it. Because there's lots of things that happen to the nails themselves that have nothing to do with any underlying conditions."

Tuesday, March 24, 2009
Off Day
I had gleefully walked over to my friend's Tara and Pete's house...something I like to do after the girls get on the schoolbus and head out for their learning and socializing day. It's MY time, with Charlotte...our dog. It was a week ago today that my right knee had arthroscope for the arthritis and patella femoral (runner's knee). I hurt sooooooooooo bad when I got home that I was utterly thankful for Tara giving me a ride home. Not sure I would've made it. It is, approximately, 2 km's to their house down our dirt roads. I took my time getting there this morning, and still got there in 45 mins. Normally, we are easily half that time and I sweat. Today, I plodded along with my cane, camera's and canine. However, it still felt like maybe I'd overdone it.
So, in my infinite wisdom, when I felt like crying this afternoon, I broke down and took a percoset. Which of course, made me jittery and super mellow all at the same time. Then my face broke out in little raised bumps, that itched. Then I flushed on the chest, and itched. Then I spent all afternoon in the loo consoling my diahrrea-ached bottom. Thank goodness a free issue of Allergic Living arrived in the mail this week...I had something to read. Ugh. And it didn't ease up all night. My armpits hurt too. That pain in my right kidney (?) again.
The pain become unbearable about 6 hours later. Since I can't take aspirin or ibuprofen and even, tylenol has become as issue as of late...I took two percoset. Kill or cure, was my thinking. And here I am 8 hours later in agony. I'm such a moron. Emma, is right. Percoset DOES seem to be aggravating me.
This all over body itching is unreal. Under the skin, nothing on top of it...except in a couple of places. Scratching does little to relieve the discomfort, so I continue to attempt mind over matter techniques. To no avail. So now, I'm waiting for it to go away.
I'm grateful that I'm breathing ok, and am not currently at the hospital post epi. We almost used one earlier when I was doubled over in the loo, puking up allergic foam and bile. I do have pain in my right lung (a typical reaction) but I'm breathing fine and my tongue isn't swollen.
EVERY bloody time I feel this way, I wish for something else. EVERY time this happens, I wish to be in another body. EVERY time I trigger, I think I've learned enough NOT to let myself be triggered again. Is it any wonder that I so often feel useless, helpless, worthless and utterly powerless with Mastocytosis? I suppose I'm only human...
So I'm learning that perhaps I'm not actually going at this alone. I'm finding comfort in perhaps there being a God that loves me and cares about me too...and that I've not been forsaken, so much as challenged. It could be a LOT worse. I could, like Masto Mama, have this horrendousness going on in my children. But I don't. It's in my body right now. And I've been given this disease because my shoulders, perhaps, are big enough to hold it. Even, if I don't always feel that strong.
There are others with more pressing, life-threatening situations going on in their lives right now. So, if you're the praying type, perhaps you could pray for Baby Stellan (born with what seems to be a congenital heart failure problem, of sorts) and for Audrey's Mom as she continues to cope with losing her little Audrey (and choosing to carry her pregnancy to term, despite knowing she was carrying a dying baby...THAT is courage) and pray for little Gavin, who deals with what I deal with but is not even 5 years out of the birthing gate and is one heck of a trooper for still smiling with this kind of pain. Please keep these people (that I've never met) in your thoughts, and in your hearts because, I know firsthand, it helps. I haven't met half of you, and I'm utterly grateful and filled with grace for your time, your love and your warmth.
Wednesday, March 18, 2009
Post Op
Before surgery, I must've had the same conversation with about 9 people. Allergies, what drugs NOT to use, what knee was being done, what precautions need to be taken, what not to use, etc.
However, I woke up, post-op, in a room, with nurses bustling around me, freaking out. I was hypothermic. And boy was I cold! They wrapped me in some sort of foil blanket and then 8 more heated blankets on top, plus my head all wrapped up. I couldn't get warm. They were rubbing me, saying things like, "Come on Fiona, stop shivering...Come on Fiona, warm up...Come on, you can do it." I was barely conscious. But aware I was freezing. I wanted to be warm too.
Not sure how long this went on for, but it seemed like forever, and then I could feel my body warming up, my teeth weren't involuntarily chattering together as quickly, and I could feel myself IN my body, finally.
They moved me to Recovery. It wasn't until I was in Recovery that I realized that my knee was hurting...oh right, I'd just had knee surgery. The nurses asked me if I needed some painkillers. Yes, I did. So they gave me some percoset, orally. On an empty stomach, it didn't take long for them to kick in.
And then, I started to feel itchy. Then, my face got flushed, my chest flushed, and I got REALLY itchy. One of the nurses came over to see if I was ok. I said I was sort of feeling like I was beginning to have a reaction, but was ok right now. She said to call her if I got worse. Then my tongue started tingling, my ears felt like they were on fire, and I called for help because I felt like I was going to be sick. Which I was. White, allergic, foam. Mixed with brown coffee-like grounds. Blood. From my intubation while under. I can't have xylocaine or lidocaine or any other caine, so it'd gone in cold turkey...obviously catching my trachea. (It's still really sore.) Then, I started coughing, coughing some more, flushing some more, and then puked white foam again. This was allergic puke, not anaesthetic puke. I'd been given drugs during surgery to make sure I didn't puke after anaethetic. This was the usual white allergic foam I hurl.
My motherinlaw appeared out of nowhere, took one look at me and said, "She's having a reaction. Where's the epi?" And she got my kit out of my bag. Three nurses were now standing around my bed watching me. One of them said they had notified the doctor. My motherinlaw asked me to show us my tongue. I opened my mouth. Everyone's jaws dropped. My motherinlaw said that it was huge; the nurses agreed. Hmmm...no wonder I was having trouble talking. Eyes and nose watering, I started coughing on top of coughing and then was gagging, then I couldn't swallow. Time for epi. My motherinlaw handed it to a nurse who said it would be better if I gave it to myself. So I did. And...relief began to wash over my body quite quickly.
The nurses, all standing around watching me, were amazed how quickly it all died down.
The doctor showed up. And, I was almost fine. The nurses said that he should've seen me minutes ago. We'd used the epi. "Good," he said, "that's the right thing to do." They discussed whether they should move me over to Emerg. or keep me there. And, opted to keep me there. Which is where I stayed, with epi shakes until I said I felt ok to go home.
And, I'm now recovering at home. Benadryl every 4 hours, plus percoset for pain (trying not to use it....) and just...feeling crappy.
Wish this would all go away.
Monday, March 16, 2009
Offerings
To my friend Nikki, who lost her Uncle to cancer this weekend - our condolences.
To the Bray Family, who lost their Mother and 12 year old Daughter; Wife; Sister; Niece; and all the many many wonderful things they were to you - our condolences. Their ATV fell through the ice on our big Lake Rosseau this past weekend. And the rescue became a recovery.
To my sister Imogen, who's dealing with some hefty issues with her son Bryn...much love, hope for a diagnosis soon, and peace in your lives.
To the parents of Baby Abby who continue to pray for a miracle, and hope, for their little girl with leukemia - and have received some really horrid flack for posting her journey and requests for prayers on their blogsite - our love to you.
To my friend Nikki, battling her own cancer...much love and strength.
To my friend Dawn, who has Systemic Mastocytosis, and is often pulled under by the sheer weight of this incurable disease's manifestations & it's financial hardships...much love, strength and warmth.
To my friend Drea, who struggles for happiness, balance and personal peace. I love you, just the way you are.
To Carla, and her two little darlings with Systemic Mastocytosis (yes, all three of them!!), glad to see Gavin is eating again (and putting on weight), that God has answered your prayers for love, strength and financial aid. I will be donating to your cause, as soon as I can figure out my PayPal account password and ID. It's here somewhere. They live in the USA, and their meds are eating them out of house and home. I'm so lucky to live in Canada and that my husband has a brilliant drug plan with his work.
All the best, for each of you.
Much love,
Fiona
xoxoxoox