What do you expect?
It's been a rocky few days around here. Shelbie's unexplained fevers and Sam's GI bleed is more drama than this mama can handle!
So, of course, we had to be seen in Salt Lake because locally, they don't know what to do anymore and our team down there always make us feel like there are answers, solutions, help...or, maybe that is just all in our own little heads.
We come to expect that doctors are going to do what doctors learned to do...diagnose and treat. I don't care how many times, we learn that this is not how it goes, we still expect it. Every. Single. Time.
This trip, I had planned to bring my mother bear self along. I try to be patient and polite; not that I wasn't that, I was a little more vocal about the fact that these kids are getting sicker and sicker and no one takes it seriously. I want someone to take charge of this wayward team of specialists and sub-specialists and make a plan. That's what I expected on this trip.
What did they expect? Well, they expected to just treat the narrow minded things they know about. That's not bad, it's something, but it's not what we need or all that we need. It's like a house burning down but the firemen, just focus on the curtains burning up.
So, there is a lesson in this...we all have different expectations of what the outcome should be. Every last one of us, and those expectations are both personal and deeply rooted and different depending on how close you stand to the flames of this disease.
My kids feel like their whole world is burning down around them and they are panicked and scared and expect that their complaints and dis-ease will result in being heard and treated. They need some fires to be put out or at least under control. As they lay there, suffering, in my head, I'm saying, "What do you expect me to do?"
I expect that as a mother of adult children and their primary caregiver, doctors will respect the fact that I spend countless hours watching my kids suffer, struggle and stumble along and I do it un-medicated and holding down a full time job. The least they could do is help. Actually help. Telling me I need to get a massage and reward my efforts with some hot yoga, or ice cream is not helping. Being patronized, is fanning the flames that are spreading out of control. I expect that they will understand that, while I do a lot of research, I don't know as much as they know. As I sit there, suffering, in my head, I'm saying, "What do you expect me to do?"
As a doctor, they have their long list of expectations as well and I respect that. They listen to hard stories and tragic stories all day long and they can't save everyone. They clearly stated this week that I need to step up my game. Shelbie has missed some doses of her seizure medication. I didn't realize I was suppose to call to Utah for more injection refills after 3 months. I haven't pushed the high doses of Vitamin D because last time we did that, it did nothing at all for her but add another pill to swallow. And, when they said they would call to schedule iron infusions but didn't, 6 months ago, I neglected to bug them and get it scheduled myself. They sit back and scratch their head and say, "What do you expect us to do, if you aren't doing your job as a caregiver?"
They forgot to weigh the fact that it's not just Shelbie I'm taking care of, it's her complications times 3 or 4 if you count my failing health. Factor in the emotional problems and angst of everyone and I'm also working full time just trying to pay for the privilege of all this chaos. So, what do they expect?
And this my friends...is ground zero in the world of chronic illness. I don't know how to remedy this problem. I don't know how to not expect things. Expectation is a hard pill to swallow and I don't think we can ever be aligned in this worthwhile cause. Maybe all I can expect, is to expect nothing.
So, there is not a plan to deal with Shelbie's fevers. Either they will resolve or the cause will become more clear. They will not do anymore PET scans or CT scans or any imaging. She has reached her threshold of radiation. In lieu of those vital tests, she will have a 3 day EEG done to try to determine why her neurological problems are increasing. We've already established that her seizures are happening deep in her temporal lobe and EEG's will not pick them up that deep...but now, if I voice my opinion on this...the answer will be..."Well, what do you expect us to do then?" So, we will do the 3 day EEG. She will also get the iron infusions she was suppose to get 6 months ago. I will step up my game.
Now we are home and Shelbie is not one ounce better, in fact in many ways, she is just worse.
It's frustrating and disheartening and it's really hard to keep going...I mean, what do you expect?
So, of course, we had to be seen in Salt Lake because locally, they don't know what to do anymore and our team down there always make us feel like there are answers, solutions, help...or, maybe that is just all in our own little heads.
We come to expect that doctors are going to do what doctors learned to do...diagnose and treat. I don't care how many times, we learn that this is not how it goes, we still expect it. Every. Single. Time.
This trip, I had planned to bring my mother bear self along. I try to be patient and polite; not that I wasn't that, I was a little more vocal about the fact that these kids are getting sicker and sicker and no one takes it seriously. I want someone to take charge of this wayward team of specialists and sub-specialists and make a plan. That's what I expected on this trip.
What did they expect? Well, they expected to just treat the narrow minded things they know about. That's not bad, it's something, but it's not what we need or all that we need. It's like a house burning down but the firemen, just focus on the curtains burning up.
So, there is a lesson in this...we all have different expectations of what the outcome should be. Every last one of us, and those expectations are both personal and deeply rooted and different depending on how close you stand to the flames of this disease.
My kids feel like their whole world is burning down around them and they are panicked and scared and expect that their complaints and dis-ease will result in being heard and treated. They need some fires to be put out or at least under control. As they lay there, suffering, in my head, I'm saying, "What do you expect me to do?"
I expect that as a mother of adult children and their primary caregiver, doctors will respect the fact that I spend countless hours watching my kids suffer, struggle and stumble along and I do it un-medicated and holding down a full time job. The least they could do is help. Actually help. Telling me I need to get a massage and reward my efforts with some hot yoga, or ice cream is not helping. Being patronized, is fanning the flames that are spreading out of control. I expect that they will understand that, while I do a lot of research, I don't know as much as they know. As I sit there, suffering, in my head, I'm saying, "What do you expect me to do?"
As a doctor, they have their long list of expectations as well and I respect that. They listen to hard stories and tragic stories all day long and they can't save everyone. They clearly stated this week that I need to step up my game. Shelbie has missed some doses of her seizure medication. I didn't realize I was suppose to call to Utah for more injection refills after 3 months. I haven't pushed the high doses of Vitamin D because last time we did that, it did nothing at all for her but add another pill to swallow. And, when they said they would call to schedule iron infusions but didn't, 6 months ago, I neglected to bug them and get it scheduled myself. They sit back and scratch their head and say, "What do you expect us to do, if you aren't doing your job as a caregiver?"
They forgot to weigh the fact that it's not just Shelbie I'm taking care of, it's her complications times 3 or 4 if you count my failing health. Factor in the emotional problems and angst of everyone and I'm also working full time just trying to pay for the privilege of all this chaos. So, what do they expect?
And this my friends...is ground zero in the world of chronic illness. I don't know how to remedy this problem. I don't know how to not expect things. Expectation is a hard pill to swallow and I don't think we can ever be aligned in this worthwhile cause. Maybe all I can expect, is to expect nothing.
So, there is not a plan to deal with Shelbie's fevers. Either they will resolve or the cause will become more clear. They will not do anymore PET scans or CT scans or any imaging. She has reached her threshold of radiation. In lieu of those vital tests, she will have a 3 day EEG done to try to determine why her neurological problems are increasing. We've already established that her seizures are happening deep in her temporal lobe and EEG's will not pick them up that deep...but now, if I voice my opinion on this...the answer will be..."Well, what do you expect us to do then?" So, we will do the 3 day EEG. She will also get the iron infusions she was suppose to get 6 months ago. I will step up my game.
Now we are home and Shelbie is not one ounce better, in fact in many ways, she is just worse.
It's frustrating and disheartening and it's really hard to keep going...I mean, what do you expect?
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