I just read a post on Hells Bells and Mast Cells about what to give as a gift for someone with a mast cell disorder, and it was SO spot on.
Ideas like books, music, and videos being good for us housebound folks, or a delivery service, or any gift cards that work for online items you can order?
Not something I really ever thought much about, honestly but so true. So absolutely spot on. I am passing this thing on to friends and family, seriously.
Well, except for me the books would have to be digital because the off gassing from new paper is a trigger for me. :-P
But digital books are great and so easy to get now, so woot!
Thursday, December 8, 2016
Saturday, June 4, 2016
Why asking questions could save lives in the medical profession: the Doctor's
I was in labor for 48 hours with my second child, my son. The friends who had volunteered to watch our daughter all had to go back to work after 48 hours of child care duty, and so as I lay in the hospital bed with my new baby boy, my husband went back home to watch our daughter, planning to come back the next day to get me and our newest itty-bitty.
For the entire 2 hours after he left, the nurses continually tried to persuade me to give them our baby so they could bottle feed him, even though we'd requested breastfeeding only. And then our son had to be taken to the NICU because he was too cold. An hour after that, I am in a panic because the new nurse on shift DOESN'T KNOW WHERE MY SON IS and I find that a little bit disturbing. When I finally got him back, it was about 3-4 in the morning, I hadn't slept in about 3 days, and I was so wired from not knowing where my son was that I couldn't sleep until I went back home later that day.
For the entire 2 hours after he left, the nurses continually tried to persuade me to give them our baby so they could bottle feed him, even though we'd requested breastfeeding only. And then our son had to be taken to the NICU because he was too cold. An hour after that, I am in a panic because the new nurse on shift DOESN'T KNOW WHERE MY SON IS and I find that a little bit disturbing. When I finally got him back, it was about 3-4 in the morning, I hadn't slept in about 3 days, and I was so wired from not knowing where my son was that I couldn't sleep until I went back home later that day.
Monday, March 14, 2016
Progress part II, and wow, some people just don't get it
So, aside from a nearly 2 month family bout of 'the flu of horror,' I have been continuing to work on my home, refining this sucker as it goes.
And it's working. It's working great, so far. Every day, I pick a room and clean a little section of it. Maybe it's just a tabletop, maybe it's an entire corner of the room, but it's something. And then every day I am adding in what I hope to be habits.
These two alone have made a huge difference
2-5 minute pickups when I have the chance
Moments when I have spare energy, doing something small, like a dish or two
With making a real effort to get a tiny bit more done per day, and then doing the 5 minute pick ups to keep it clean, my house has been slowly but steadily getting cleaner.
I got also got a huge boost for cleaning my garage when my ex came to visit to drop off my son and offered to help get it in shape. I am truly grateful for the help, but it's fascinating (okay, and infuriating) to hear his opinion.
Because the thing is...he doesn't really believe in chronic illness in terms of its reality. Don't get me wrong, he believes it exists. He believes I have one. But the day to day reality of it never becomes part of his internal dialogue about my daily life.
I think my interactions with him, where I've heard most theories that came into his head about my life and my actions (often whether I wanted to or not), have helped me understand how completely clueless folks can be when they don't have the same experience as someone else.
It's easier with something big and obvious - this person is blind, that person lost a leg, this person is from a different culture. People see that and there is an obvious physical sign that they may have a different life experience than you. But what about folks like myself, those with chronic illnesses, often invisible illnesses? I don't think most people understand just how different our realities are from their own. After all, it looks the same on the outside, right?
And so people try to frame what they see by their own experiences: why do THEY do the things that they see us, the chronically ill, doing?
And they can get it so terribly wrong. If we have a messy house, it's because we're slobs or hoarders, not because we're ill and exhausted and made a choice that day, or that month, to sleep and avoid further illness rather than clean the house.
If we choose to clean only a little bit each day, it's because we're lazy or procrastinators, not because that's the only amount of energy we have to spend that day.
If we choose to not go to a social gathering, it's because we're anti-social, not because we're sick.
And this knowledge? It has actually helped me a lot this visit, believe it or not. Because I have been slowly improving things in my house and my life (thank goodness for new treatments that are working!), and then the ex comes along and starts to share what he thinks is wrong, and how things 'should' be done...and it's all so completely the opposite of my own experience that it helped me realize that I'm doing the RIGHT thing.
And it's working. It's working great, so far. Every day, I pick a room and clean a little section of it. Maybe it's just a tabletop, maybe it's an entire corner of the room, but it's something. And then every day I am adding in what I hope to be habits.
These two alone have made a huge difference
2-5 minute pickups when I have the chance
Moments when I have spare energy, doing something small, like a dish or two
With making a real effort to get a tiny bit more done per day, and then doing the 5 minute pick ups to keep it clean, my house has been slowly but steadily getting cleaner.
I got also got a huge boost for cleaning my garage when my ex came to visit to drop off my son and offered to help get it in shape. I am truly grateful for the help, but it's fascinating (okay, and infuriating) to hear his opinion.
Because the thing is...he doesn't really believe in chronic illness in terms of its reality. Don't get me wrong, he believes it exists. He believes I have one. But the day to day reality of it never becomes part of his internal dialogue about my daily life.
I think my interactions with him, where I've heard most theories that came into his head about my life and my actions (often whether I wanted to or not), have helped me understand how completely clueless folks can be when they don't have the same experience as someone else.
It's easier with something big and obvious - this person is blind, that person lost a leg, this person is from a different culture. People see that and there is an obvious physical sign that they may have a different life experience than you. But what about folks like myself, those with chronic illnesses, often invisible illnesses? I don't think most people understand just how different our realities are from their own. After all, it looks the same on the outside, right?
And so people try to frame what they see by their own experiences: why do THEY do the things that they see us, the chronically ill, doing?
And they can get it so terribly wrong. If we have a messy house, it's because we're slobs or hoarders, not because we're ill and exhausted and made a choice that day, or that month, to sleep and avoid further illness rather than clean the house.
If we choose to clean only a little bit each day, it's because we're lazy or procrastinators, not because that's the only amount of energy we have to spend that day.
If we choose to not go to a social gathering, it's because we're anti-social, not because we're sick.
And this knowledge? It has actually helped me a lot this visit, believe it or not. Because I have been slowly improving things in my house and my life (thank goodness for new treatments that are working!), and then the ex comes along and starts to share what he thinks is wrong, and how things 'should' be done...and it's all so completely the opposite of my own experience that it helped me realize that I'm doing the RIGHT thing.
Tuesday, December 8, 2015
Progress
What I'm trying to do:
Keep up with the idea of routines, as opposed to 'keep my house immaculate' or 'keep my body super awesome.'
So far? I like this a LOT. It's not perfect. In fact, after just a few days I can down with a nasty cold which has knocked me for such a loop I wasn't able to do anything for a couple days.
But I WAS able to do my little routines even when pretty miserable.
Keep up with the idea of routines, as opposed to 'keep my house immaculate' or 'keep my body super awesome.'
So far? I like this a LOT. It's not perfect. In fact, after just a few days I can down with a nasty cold which has knocked me for such a loop I wasn't able to do anything for a couple days.
But I WAS able to do my little routines even when pretty miserable.
 |
| Including some new ones, like eating more carefully! |
Thursday, December 3, 2015
Deslobification, chronic illness style
I came across this blog the other day: http://www.aslobcomesclean.com
It's nice to listen to someone who is pretty honest about how hard they find it to keep things clean, and their own personal habits. She called her process 'deslobifiction,' which sounds just so appropriate to how this feels that it makes me grin.
She's a person who is trying to stay clean and who does NOT like to do it. That's so me - I would be quite happy to hire someone to clean for me so I can spend time doing something else I want to do with that time. If I could afford it.
She's a person who is trying to stay clean and who does NOT like to do it. That's so me - I would be quite happy to hire someone to clean for me so I can spend time doing something else I want to do with that time. If I could afford it.
And I enjoyed a lot of her ideas. The concept of building routines - like doing a dish when you have a free moment - really appealed to me.
I was struck, however, by one thing that this gal discusses, which I've seen in a lot of cleaning blogs: routines and habits that involve doing X or Y before you go to bed.
Yeah, thats not going to happen for many of us with chronic illness.
Monday, May 25, 2015
Homeschooling kids with allergies
Okay, so this is not so much funny as uplifting, okay? This is my 'do it yourself' blog post with a helping of 'you can totally do this!' added in.
When you have a kid with severe health problems, and you have at least one parent making enough money you can get by, homeschooling is something that often comes up. Sometimes even if you don't have enough money to get by.
But the big question becomes for many parents: can I do this? Can I homeschool and not turn my children into raging voids of ignorance and social isolation? It's not so much 'Are you smarter than a 5th grader,' it's 'can you raise someone to be smarter than a 5th grader.'
I have two kids now, both teens, both homeschooled from kindergarten on up. And I will share my copious wisdom, or rather kind of so-so wisdom and stuff I picked up accidentally over the years, in the hopes that it might help you out.
When you have a kid with severe health problems, and you have at least one parent making enough money you can get by, homeschooling is something that often comes up. Sometimes even if you don't have enough money to get by.
But the big question becomes for many parents: can I do this? Can I homeschool and not turn my children into raging voids of ignorance and social isolation? It's not so much 'Are you smarter than a 5th grader,' it's 'can you raise someone to be smarter than a 5th grader.'
I have two kids now, both teens, both homeschooled from kindergarten on up. And I will share my copious wisdom, or rather kind of so-so wisdom and stuff I picked up accidentally over the years, in the hopes that it might help you out.
Sunday, April 19, 2015
The Ass Alarm
Since I've restarted this blog, I've realized that I have no information here anymore about what it's all about. A quick summary may be in order.
I have a disorder called a Mast Cell Activation Disorder. It doesn't have any more name than that because doctors don't yet know more than that. There are a few Mast Cell Activation Disorders that are known, and named. There are more that doctors are just now realizing exist. With testing, experts are comfortable enough to admit, 'yes, your mast cells are acting completely wacky.' But they don't know why, and they don't have names for my particular brand of wackiness as yet.
So I just get to say that I have MCAD and leave it at that.
And MCAD? It is truly bizarre and can lead to an amazing number of situations that are honestly rather ridiculous and hilarious.
Like my butt.
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