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.

It's Raining, It's Pouring...when do I get to be Normal?

Had 4 incredible days. I felt almost 'normal.' Then today my bubble burst. Began with itching, then gut pain, running to the loo because of the soup leaving my ass, spots under my skin on my chest and face began to surface (and now will stick around for a few weeks, making me look blotchy...and they'll continue to itch.) It's not worth scratching because there's never any relief. I'm not sleeping AGAIN...and it's pissing rain outside. I love rain. Why doesn't it like me?

I can breathe, thankfully.

Headache hitting me. Bone pain is unreal...especially in my legs and back. That place in my lower back, right side, was hurting this afternoon. I should've listened to it. Kidney? Adrenal gland? Gall bladder? Ugh...

It's my own fault. I went to the school (friend had a kid emergency), went to the hospital with them, then to WalMart and the Dollar Store for treats for this kid. I felt fine at the time. Almost normal. Tongue got fat but no distress.

I'm so tired of 'triggers'. I'm so angry with myself for being foolish enough to believe Tara that if I just willed this all to go away, that it would. I wanted to believe, I guess, that I could be in control of THIS, not it in control of me. I'm an idiot. For a scant 4 days, I almost believed it too.

What we know, now, is NOT to ignore these early warning signs. Pre-cursors to bigger reactions and imminent death. So now I have to be hyper-vigilant.

Tara exclaimed yesterday that she missed me, and that she "misses this!!!" (us, hanging out, with only her and her children to be concerned with, shopping, me helping her...) and for a scant few days, I bought into it. I guess the rotten truth is, my 'illness' is ok as long as it doesn't affect her. I hate this observation that has been made clear.

I need to take care of me first. Today and yesterday, I totally cared for other people, before caring for me, and here I am at just gone midnight in unbelievable bone pain, nauseated, diarrhea, itching like hell (when the Benadryl wears off) and no-one else is bothered. I feel like a selfish child right now. I want to blame Tara's insensitivity to all of this, but the truth is...I'm the only one in control of me. And, like my mother before me, I put the needs/wants of others (friends) before my own safety these past few days...and THAT is idiotic.

Lesson learned. Fortunatley, before Epi and a trip in the ambulance. Hope to keep it this way.

My husband is turning 40 May 1st, so I'm trying to plan a birthday party for him. It'll have to be here, at the house. What I like about parties is, I'm always totally happy if only I/We show up. If anyone else shows up, it's like gravy. Really good gravy. So, gravy would be nice. And if not...we'll have our own party. [insert warm fuzzies here.]

In the meantime...loads of love to Dawn and Emma who are having crappy Masto days, especially today. Lots of warmth to Carla and her family as they readjust to life after being in the hospital for 19 days straight with little Gavin.

As well, congratulations to The Canadian Mastocytosis Society for moving forward into awareness and the public domain. Carrie, who started this whole thing is an incredible woman, who's devoted many many hours of herSelf to Masto. awareness and support. Heck knows, we could all use it. She's a very humble woman too...so being grateful for her and her work is all the more rewarding. Thanks Carrie!!!! You're awesome!!!!!!

To the rest of you/us...be careful, and much warmth to you for reaction free days.
oxxoxo
Fiona

Complacent, Bothered and Bewildered...

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

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

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

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

Bone Marow Biopsy and stuff...

First, may I please ask that you continue to keep Dawn and Gavin in your thoughts, hearts, minds and prayers. Gavin's big sister, Chelsea is having an understandably hard time with her Mom being at the hospital this past two weeks and wants them all to be home together. Dawn...I just want to wrap Dawn and her family in a big love blanket, take away all this health crap and enjoy a 'normal' day together...one day....

Also, one of the most amazing people I know and love is coming to terms with her father's suicide/death right now and, while I can't possibly know what it's like to lose my parents (her Mom died of cancer a scant couple of years ago...), I want to ease her pain and suffering and loss. Drea, I love you. xoxooxoxo

It's really odd when you become your own administrator. Two weeks ago I saw Dr. Vadas in Toronto, and he says that he is not in receipt of the abnormal tryptase/24 hr catecholamine (elevated levels of histimine) results that were done in Winnipeg by Dr. Hicks's Immunology office. Weird. All my other stuff had been forwarded. It has taken me two weeks to get a hold of an actual person...and they wouldn't forwarded those results to Dr. Vadas because I have to sign a medical release form, apparently. I've signed one for Dr. Fischer's Immunology office in Barrie...so I asked if they could send it there. I called Jane, Dr. Fischer's INCREDIBLE administrator, and she said she'd watch for it, and send it on immediately to Dr. Vadas. Once again, she had my file on her desk. She says I'm a 'special' patient. We joked, NOT the kind of 'special' a person really wants to be. So...FINALLY, that should be sent on...

I see Dr. Vadas again tomorrow. I've had one Epi-breakthrough reaction in the past two weeks, and days of facial and throat swelling. This subsided yesterday FINALLY. I feel almost human today...which is amazing!!!!

Bone marrow biopsy with another Dr. Hicks in Toronto, at St. Michael's tomorrow morning. This time for the c-kit mutation. No-one has told me whether I need to be on or off meds for it; no-one has told me anything except they know about my severe latex allergy and to show up. I'll need to tell them I can't have lidocaine or xylocaine or painkillers...as I go into shock. Mind you, I guess if that happens, I'm in the right place???? Ugh, NOT looking forward to this. I have managed, pretty much to put it out of my mind. But, it's looming, getting closer....I don't ask for people to think of me very often, but please, if you could tomorrow morning...that would be grand. I'm scared. This test hurts soooooooooooooooooo bad; and is super unpleasant (excrutiating) and...I wouldn't wish this on anyone.

Dawn and Gavin

Please keep Dawn and Gavin in your thoughts, heart and minds...they are both in hospital suffering with Masto and gut-related symptoms, and have been for a few days.
xoxoxoxo
Fiona

Talking

I had a conversation with my friend Tara yesterday. She told me that by talking about my illness, I am manifesting it. Apparently her and the ladies at Playgroup were discussing me on Wednesday. They want me to be well. Tara is of the mind that by talking about what ails me, I am making it happen in my life. She says that my dad is right when he says that I've been ill ever since I moved here. Because I have tried to be too much to too many people too much of the time. She says that I need to take care of me, and that includes not thinking about what's wrong with me all the time, looking forward with the assumption that I am well and healthy.

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...

Tuesday's Trivialities

Let me begin with asking you to keep Dawn in your thoughts today. Masto bites. Lots of love and warmth coming your way Dawn...thinking about you.

The chickens arrived today. Ok, we had to go get them. But here they are.

That took the life out of me. Mind you, there were 60 of them. 24 for us; 36 for friends who loaned us the truck to go get them. The snow made it harder for us to transport them from truck to coops. My lungs still don't feel right but I'm breathing...

I'm having trouble seeing today. And, I've 'lost' time a few times today. I look super tired, black rings under my eyes...not myself. Eyes are sore. Feel like I didn't sleep, even though I know I did. Tongue is puffy. I'm itchy.

At least my tummy feels better. Now, if I could just keep warm.

Hoping your day is better.

Monday Meanderings

Snow is falling heavily on our Northern Ontario community. It's unseasonably odd.

Our yearling chickens are supposed to be here tomorrow, so at 6pm, after work my husband is out in the cold putting together some kind of rudimentary housing for them until our chicken coop plans arrive and I can start putting together a straw bale coop (insulated!) I appreciate him being out there in the cold doing this. This isn't usual weather for us, so normally it would be sunny and brisk for the arrivals. Alas...

I ate half a pecan pie today because I was so miserable. Then fell into a coma all afternoon. No wonder I feel like a dead weight and moderately miserable right now. Ugh....I was annoyed because Ant didn't ring before he left work to get the updated grocery list. Which means he didn't check his email and FB messages either and...came home without all the stuff I need. Or think I need.

Part of my problem is this isolation and loneliness. Tasks like shopping, and missing an item from the list seems insurmountable when I'm not able to pick these items up myself. In light of the fact that my husband rarely cooks (but when he does, it's amazing!) and that a missing item can mean the difference between being able to make what you think you're going to make; and not. It doesn't bother him. And why would it? He goes into work everyday. He now has to deal with the chaos of stores that he frequents to purchase our groceries. He sits in traffic jams (small ones...we live in a small community.) I can go days without seeing anyone but myself, my husband and two children. And it's not by choice.

My husband keeps telling me that I have to start finding personal peace in what IS; where we ARE; who I AM; how things ARE...instead of hoping for a miracle.

I've always been comfortable in my own company. However, I never expected to have THIS much time to myself....

I shouldn't complain. Others would LOVE to have this time at home.

Sunday

First off, little Gavin is having an endoscope this morning to try and find out the source of his internal gut bleeding and discomfort. IF you will, please keep him in your thoughts and prayers this morning, and hope for his doctors to find the source.

Gavin's Mom, Carla, keeps a poignant blog about her family's health issues and the journey with Masto and its complications. Today's entry is particularly poignant. Carla discusses her walk with tribulation and the comfort she's found in God. It's worth reading. Even if you're not God-fearing or God-loving. She manages to express the fragility with which we walk with illness, and those we love who have it.

http://mastomama.blogspot.com/2009/04/ah-alone-at-last.html

It was a tough week for me. I had a reaction (ironically at a Church) on Tuesday...I was attempting to have a 'day' in town. I was feeling strong when I left for town in the morning. And ended up in the Rescuc. Room in Emerg. by 1pm. I've been flaring up and down since. I flared up yesterday at the Christie District Fire Fighter's Pancake Breakfast. I wanted to go out and support them - even bursting into tears at my family's dispondency about getting there because "these people come out and save me all the time"...I started reacting within minutes of having a coffee and my eggs. Antony wonders if maybe they used a rubber spatula on the eggs in the kitchen. That's all it takes. Fortunately, got through it with 100 mgs of benadryl, and all the other drugs I have. I wasn't willing to use Epi, despite coughing because I wasn't gagging and in total distress. Just discomfort.

I got a lecture about this earlier this week. I saw Dr. Vadas in Toronto. He wants to see me again in two weeks. Around the same time that I have my bone marrow biopsy. He says I'm waiting too long to use Epi. Use it first...THEN chuck the antihistamines at the body to keep the reaction at bay.

He laughed nervously when I asked if he saw any reason why I couldn't have my driver's license back. I need to be reaction and blackout free for a year before we can even revisit this again. Ugh...THIS is the worse loss of personal freedom.

I'm wondering about staying here, on the farm. Antony has a good job here, with great benefits, and all that but I'm soooooooooooo isolated. And, to be honest...the friends that I have here don't make an effort to come to me. Perhaps though, this is because I make too much of an effort to go to them. And, apparently, it's dangerous. Wonder if they'll miss me if I am just not around? I'm starting to doubt it. I know this wouldn't be true of my Winnipeg friends. I get it that they are busy with their families...I'm just lonely.

Have to take my medication ON TIME. No missing doses, no not being regular. Dr. Vadas thinks this might have been part of the reason that I had a reaction coming out of knee surgery the other week. I'm to ask Dr. Smythe (Ortho. surgeon) whether they used Torodol on me. And, Dr. Vadas has put me on Gastrocom, to see if it helps with the gut issues I'm having. Have to take this 4 times a day.

Also, Dr. Hicks, in Winnipeg, has not forwarded the abnormal tryptase report to Dr. Vadas/Dr. Fischer. I have to get this for him. It'll be quicker than if he gets his secretary on it. So, this'll be part of the things I need to do tomorrow.

I'm tired of talking about my healthcare situation. There are sooooooooo many more interesting things to write about. However, this is my reality. We write what we know, right?

Hysterectomy

Now I have to have a hysterectomy. Get to keep my ovaries. Not an option. No other ways out.

So, I'd like to thank my womb for bringing two amazing girls into my life.

Thanks.

Post Reaction and a trip to see my Immunologist

I can't talk about it. Will try again tomorrow. OMG...WHERE have my words gone!?!?!?

Update

Had anaphylaxis yesterday, at a Church. That'll teach me to branch out and TRY to go somewhere. Two epi pens and drugs later...they let me home. The hospital is used to me now and trusted I could look after myself at home after the reaction.

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.