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...
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...
3 comments:
I know we don't know each other but I have to tell you - this post is making so incredibly angry for you.
Your so called friend. Would she tell a friend it's all in her head if she had cancer or diabetes or aids? Of course not - that's a "real" disease. Because these people haven't heard of masto, seen the true results of a flair are going to reduce it down to "it's all in your head".
You and I know that it's not. It's a very real disease with very real symptoms and no known cure. It's only normal to need to process this in your head and in your heart. Even when you've made peace with your disease... whatever it may be, it's still there and you still have to deal with it.
I hope this is making sense. I'm having brain fog issues today.
I'm glad you are on the mend. Sending you healing and non-puffy vibes.
You should continue to post your status on facebook etc. so that those of us that really care can be thinking about you while your going through these trying times. The ones who are "sick of hearing of it" can take a hike!
Thank you...[sigh]...just thank you.
xoxoxoxo
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