Congrats, you are 1 year without another major flare!
You win: One Institutionalized Mother!
Showing posts with label close friends. Show all posts
Showing posts with label close friends. Show all posts
Friday, March 6, 2015
Friday, April 4, 2014
Don't Move, Don't Breathe, Don't Do Anything Except... Pray
Today was a rough day.
You know what I mean, rough day? Like, everything makes you want to cry kinda day? It was definitely one of those days.
Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again. We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished. Way stressful. So let's start the day there.
I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness. As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things. And of course, this morning, I had someone who was on the higher end of MS symptoms.
I truly love my job, because the people I see need me as much as I need to see and help them. It is healing on both fronts. But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others. You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.
It doesn't help the heartache when they leave that there's very little you can do. And it doesn't help you feel hopeful that your own condition won't look like that in a few years. How else are you supposed to feel about MS when that is what you see every week?
Later today, I had another appointment with the radiologist and hour from work. I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes. That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.
Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.' It's really how you feel. And about 80 minutes in, I started to lose it, and wanted to scream to get out. Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride. When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI. I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.
Obviously I made it through okay, but what a nightmare. I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me. Oy.
At least I grabbed a bagel on the way home. It's Friday, right? Until next time -
You know what I mean, rough day? Like, everything makes you want to cry kinda day? It was definitely one of those days.
Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again. We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished. Way stressful. So let's start the day there.
I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness. As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things. And of course, this morning, I had someone who was on the higher end of MS symptoms.
I truly love my job, because the people I see need me as much as I need to see and help them. It is healing on both fronts. But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others. You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.
It doesn't help the heartache when they leave that there's very little you can do. And it doesn't help you feel hopeful that your own condition won't look like that in a few years. How else are you supposed to feel about MS when that is what you see every week?
Later today, I had another appointment with the radiologist and hour from work. I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes. That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.
Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.' It's really how you feel. And about 80 minutes in, I started to lose it, and wanted to scream to get out. Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride. When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI. I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.
Obviously I made it through okay, but what a nightmare. I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me. Oy.
At least I grabbed a bagel on the way home. It's Friday, right? Until next time -
Wednesday, March 26, 2014
Making Decisions
I decided to go with Gilenya. I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues. It's the day after my birthday, FAN-TAS-TIC.
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
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