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?
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?
2 comments:
{{Hug}} Fiona.
I'm reading backwards here to catch up.
Listen, you can phone me anytime. Like you, I'm pretty much housebound most of the time. I've set up a system with my friends....we call each other and keep in touch that way. When I'm up to it, I call them and they come to me or we meet or go out for a bit. Nobody makes demands. They get upset when I don't phone them so maybe your friends are trying to respect your need to care for yourself. Just pick up the phone and say you just want to gab about their life, anything. And I'm always here. As is Denise and so many others who are usually up for a phone chat.
If not for the pet emergencies here the past 2 months I would have been in touch already by phone. I'll do better with that.
Oh...not sure if this helps, but online or even books on CD are a great help to me when my eyes are fried and I just can't do anything. I have some links if you're interested. Lots of good stuff at BBC radio, some at CBC, NPR etc.
Carrie
So I'm NOT imagining it that my eyes are fried and am incapable of reading!??!!??!
Would love those links. THanks Carrie.
Having written all this, I'm pretty crap with the phone. I know it's a lifeline but I just don't enjoy time on it, with anyone. I love words. I love company. But hey, if the phone is the best we can do...so be it.
I appreciate you so much. Thanks.
xoxxo ((hugs))
Fiona
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