“But still and forever she remains defective and defeated. Not all the spirit and ingenuity in the world, not all the substitutions or compensations..., can alter in the least her continuing and absolute loss...”
- The Man Who Mistook His Wife For A Hat
By Oliver Sacks
Saturday, 25 May 2013
Friday, 17 May 2013
Eating, Swallowing
My swallowing muscles and chewing muscles have definitely deteriorated noticeably in the last 4 years or so. The first time I got something stuck in my esophagus, it blocked all other swallowing so I had to suction out saliva that built up very quickly. I went to the hospital to get it out. That happened several more times, that I went to the hospital to get something removed. It's a ridiculous ordeal, because the doctors always want to try things that we've already tried on previous visits that didn't work. The treatments that did work were putting a large tube down my throat and either pushing the food down into my stomach, suctioning it out or both. Twice,out of approximately four visits, they used a large tube connected to a camera to get the food out. The first time was without anesthetic and it literally felt like torture. The second time they used twilight sleep, so I was not conscious and it was a much better experience. This way they also confirmed that I didn't have other problems, besides weakened muscles. The first time, the doctor said, "Well, we ruled out cancer." I thought, "Holy fuck, I didn't even know cancer was an option to think about!"
Since then I've learned how to get things out of my throat myself with my suction machine. I just put a suction catheter down through my mouth and keep at it until everything comes out and I can swallow again. It can take 30 mins to an hour to get it all, but it's better than 5 hours in the emergency room.
I'm also more careful about taking smaller bites and concentrating on chewing my food, so that I'm not careless about swallowing food that isn't chewed enough. I avoid steak, because I find it harder to chew and it takes much more effort to chew properly. I also avoid pizza that doesn't have a thin crust and don't eat the end crust part at all. Other things I am extra careful with are shrimp, hot dogs, and any kind of meat that isn't extremely tender. I have to be careful with anything that might get stuck that wouldn't resolve itself, like meat and cheese. Usually bread, crackers, and things like that can be broken down by saliva and if they don't block completely I just wait until it is ready to go down. I also have trouble with large pills, and try to get liquid medications if possible, so I can put them through the stomach tube.
Friday, 10 May 2013
It's Fucking Hard
I wrote this in response to a post that a woman made on a forum I belong to. The forum is a group of women who have Pompe (glycogen storage disease type 2), and we share information, offer support, and generally talk about our lives. The woman I responded to was scared of the amount of muscle damage that showed up in a recent medical test, and was worried she might lose the ability to walk. I wanted to share it here, because it contains a lot of my own fears and feelings about the disease.
I think all muscle damage is scary. I don't think I am speaking for myself saying that we all want to retain as much function as possible for as long as possible. I think that part of the reason this forum exists is to get each other through the fact that, muscle damage and loss of function is inevitable and frightening.
I go through a grieving process every time I have to give something up, whether it was walking, or going to university, or a hundred other different things. It's so hard.
Some days I'm sure that the progression has to stop, because it's already taken so much away; how could it possibly take more? Some days I think that if I lose another function or some specific function that I won't' be able to live with it and I think, "how can I go on?" But then it does happen, I lose it, and I do go on, and it's hard as hell.
I use the support of my family, friends, and health professionals to get through it. Some days it feels like nobody understands, and how could they possibly understand what it's like to feel your body slowly betraying you, or being so tired you can barely think. Honestly, a lot of times they can't, and that is another good reason this forum exists, because the people here can understand. We can be scared together, we can grieve together, and we can go on.
I think all muscle damage is scary. I don't think I am speaking for myself saying that we all want to retain as much function as possible for as long as possible. I think that part of the reason this forum exists is to get each other through the fact that, muscle damage and loss of function is inevitable and frightening.
I go through a grieving process every time I have to give something up, whether it was walking, or going to university, or a hundred other different things. It's so hard.
Some days I'm sure that the progression has to stop, because it's already taken so much away; how could it possibly take more? Some days I think that if I lose another function or some specific function that I won't' be able to live with it and I think, "how can I go on?" But then it does happen, I lose it, and I do go on, and it's hard as hell.
I use the support of my family, friends, and health professionals to get through it. Some days it feels like nobody understands, and how could they possibly understand what it's like to feel your body slowly betraying you, or being so tired you can barely think. Honestly, a lot of times they can't, and that is another good reason this forum exists, because the people here can understand. We can be scared together, we can grieve together, and we can go on.
Thursday, 11 April 2013
The Facts of Life
I've been watching the Facts of Life on netflix and I'm on about the third season. I loved this show as a kid, but I've noticed something as an adult. First of all, all of the main characters are women, and that is amazing. That is pretty unusual in itself, and considering that the first season aired in 1979. The show also talks about social issues. They've covered alcohol, drugs, eating disorders, rape, race, and disability; to name only a few. It's still a comedy, and there is only so much depth you can get in a half hour, but it's not all about boys and sex. This show passes the Beckdale test. The characters are stereotypical, and some of the answers to issues are pretty dated, but I think those are minor criticisms. If you get the chance, give it a watch.
* Here is how the test works: watch a movie, any movie, or even a particular episode of a television series, and then see if it fits the following criteria:
1) There are at least two female characters that are credited with actual names so it does not count if they are called “female officer 1” or “girl at diner”.
2) Any two named female characters must then at some point in the film have a conversation with each other.
3) This conversation must last at least 45 seconds…
4) …and it must be on any topic other than boys, men, or males in general.
* Here is how the test works: watch a movie, any movie, or even a particular episode of a television series, and then see if it fits the following criteria:
1) There are at least two female characters that are credited with actual names so it does not count if they are called “female officer 1” or “girl at diner”.
2) Any two named female characters must then at some point in the film have a conversation with each other.
3) This conversation must last at least 45 seconds…
4) …and it must be on any topic other than boys, men, or males in general.
Monday, 25 March 2013
I miss...
I miss:
Walking
Showers alone
Standing up
Washing my own face & body
Stretching
Being able to go inside the dwellings of family & friends
My family visiting me without pain on their faces
Putting on my own clothes & makeup
Sleeping in the same bed as my lover
Initiating affection & support without having to ask the person to help me hug them
Cooking , cleaning laundry, dishes
Being alone
Privacy
The ability to go outside and sit in the yard, go for a walk, shopping, eat out, leave the house without planning
Spontaneity
Being able to move around comfortably in a small space
Stairs - especially because the lift I use scares the shit out of me. I don't like heights & I do have nightmares about it plummeting to the bottom
Not being depressed.
Rarely taking pills
Being naked for no particular reason
Wearing a robe - I used to have a nice silk one
Organizing my own crap
The days when I could think of this disease as a condition & the effects wouldn't be real until far in the future
Not worrying about how close I am following the special diet
Being unafraid of carbohydrates. I feel like every gram I eat is going to help kill my muscles faster
Eating carbs without feeling like a bad person
School - I adored university & will forever regret I did not even get a degree when I planned to get a PhD
Scratching itchy spots
Playing with my pets & being able to make them behave
Being warm in normal temperatures
Gardening
Sitting on the couch
Sitting without pain
Traveling
Dancing
People not staring at me
Having a job
Having energy
Sleeping less than 10 to 12 hours. Also mornings.
Being able to reach the floor or a spot more than a few inches in front of me
Pain
I promised I would write here more. I feel like I should be saying something profound for some reason, but if I only write when I have something profound I may never write.
Today is a bad pain day, and yesterday was bad, but not as bad as today. The day before, I didn't need any extra pills, but the day before that I did. Two days in a row before that I didn't take any either. There seems to be no rhyme or reason to this. I can't see a pattern. Some of it has to do with the adult brief and pad that I have to wear, more bulkiness under my butt, and sometimes there are wrinkles or bunches in them that are just a function of them being absorbent. (I refuse to use the "D" word.) The pain is basically from sitting. I only have two options. Sitting and laying down. I really don't want to spend more time in bed than I already do. **
I take codeine every day; T2s before I get out of bed and time release twice a day. I am allowed to take more T2s or hydromorphone about 5 to 6 hours after the first dose. The last couple days it's been hydromorphone.* All of these opiates lead to crazy constipation which means I have to take fairly serious laxatives. To make matters worse, my smooth muscle is affected by this disease, as well as skeletal. This means that the muscles around my intestines are getting weaker. I was in the hospital over a month ago for what we thought might be a bowel obstruction. It turned out not to be and the treatment they tried worked very well. The problem is that I cannot get to the bathroom in a timely manner. I hate having accidents. It's gross and embarrassing I suppose this is the bright side of wearing briefs and pads; things are more contained. I am experimenting with dosage of the laxatives to find a happy medium between being regular and not shitting myself. It's depressing.
It's another thing that I feel that my body has done to me. Dignity gets more scarce as time goes on. I never expected this to be one of things that changed. It just never occurred to me. I can usually see ahead to what is going to happen next. Things get slightly more difficult, then difficult and then I can't do them anymore. This isn't something I foresaw.
There is the option not to take the pain pills, but being in pain changes me. I spend time and energy, mental and physical, ignoring it. Pain makes me tired. I am less able to enjoy life. I am less able to hold conversations, to pay attention to the people and things around me. My partner notices that I zone out more. I tend to focus on TV shows or movies. In fact, I notice that I watch shorter shows and avoid movies when I'm in pain. Some days, I try to be stubborn and not take the pills, but I ask myself, "What is the point of doing that?". My partner tries to encourage me to take the pills and not be stubborn. I'm afraid of becoming addicted. I talked to my doctor about this recently and she said if I was going to become addicted to anything I would have already. I was very relieved to hear this, but I still worry anyway. She did say it is possible to build up a tolerance to the drugs. I'm not sure what happens if the codeine stops working. I move up to hydromorphone all the time? What do I do if that stops working? It worries me. We are trying to change my seating on my wheelchair (new cushion and back), but it is slow going, it will be more painful for the first couple months at least, and we have no idea if it will actually work. Discouraging to say the least. The story about the seating is another blog post entirely.
*Side note: I react to opiates and other medications differently than other people. I seem to need more pain pills, of any kind, than other people to get rid of the same amount of pain. Sleeping pills usually make me high instead of sleepy. The first sleeping pills I ever tried made me slightly hyper. I always wake up from anesthesia sooner than expected, and I usually do not become unconscious easily. Anesthetic always works, but I wake up early. Also, at times doctors thought I should be unconscious (low oxygen levels) I am up and awake.
**Right now I spend about 13 hours in bed per day. I actually get into bed around midnight and then start getting up at 1pm. Needing 10 to 12 hours asleep at night is very annoying.
Today is a bad pain day, and yesterday was bad, but not as bad as today. The day before, I didn't need any extra pills, but the day before that I did. Two days in a row before that I didn't take any either. There seems to be no rhyme or reason to this. I can't see a pattern. Some of it has to do with the adult brief and pad that I have to wear, more bulkiness under my butt, and sometimes there are wrinkles or bunches in them that are just a function of them being absorbent. (I refuse to use the "D" word.) The pain is basically from sitting. I only have two options. Sitting and laying down. I really don't want to spend more time in bed than I already do. **
I take codeine every day; T2s before I get out of bed and time release twice a day. I am allowed to take more T2s or hydromorphone about 5 to 6 hours after the first dose. The last couple days it's been hydromorphone.* All of these opiates lead to crazy constipation which means I have to take fairly serious laxatives. To make matters worse, my smooth muscle is affected by this disease, as well as skeletal. This means that the muscles around my intestines are getting weaker. I was in the hospital over a month ago for what we thought might be a bowel obstruction. It turned out not to be and the treatment they tried worked very well. The problem is that I cannot get to the bathroom in a timely manner. I hate having accidents. It's gross and embarrassing I suppose this is the bright side of wearing briefs and pads; things are more contained. I am experimenting with dosage of the laxatives to find a happy medium between being regular and not shitting myself. It's depressing.
It's another thing that I feel that my body has done to me. Dignity gets more scarce as time goes on. I never expected this to be one of things that changed. It just never occurred to me. I can usually see ahead to what is going to happen next. Things get slightly more difficult, then difficult and then I can't do them anymore. This isn't something I foresaw.
There is the option not to take the pain pills, but being in pain changes me. I spend time and energy, mental and physical, ignoring it. Pain makes me tired. I am less able to enjoy life. I am less able to hold conversations, to pay attention to the people and things around me. My partner notices that I zone out more. I tend to focus on TV shows or movies. In fact, I notice that I watch shorter shows and avoid movies when I'm in pain. Some days, I try to be stubborn and not take the pills, but I ask myself, "What is the point of doing that?". My partner tries to encourage me to take the pills and not be stubborn. I'm afraid of becoming addicted. I talked to my doctor about this recently and she said if I was going to become addicted to anything I would have already. I was very relieved to hear this, but I still worry anyway. She did say it is possible to build up a tolerance to the drugs. I'm not sure what happens if the codeine stops working. I move up to hydromorphone all the time? What do I do if that stops working? It worries me. We are trying to change my seating on my wheelchair (new cushion and back), but it is slow going, it will be more painful for the first couple months at least, and we have no idea if it will actually work. Discouraging to say the least. The story about the seating is another blog post entirely.
*Side note: I react to opiates and other medications differently than other people. I seem to need more pain pills, of any kind, than other people to get rid of the same amount of pain. Sleeping pills usually make me high instead of sleepy. The first sleeping pills I ever tried made me slightly hyper. I always wake up from anesthesia sooner than expected, and I usually do not become unconscious easily. Anesthetic always works, but I wake up early. Also, at times doctors thought I should be unconscious (low oxygen levels) I am up and awake.
**Right now I spend about 13 hours in bed per day. I actually get into bed around midnight and then start getting up at 1pm. Needing 10 to 12 hours asleep at night is very annoying.
Monday, 11 March 2013
Purpose
I thought that I would use this blog mostly to talk about disability in a more scholarly way, book reviews, posts about social and disability issues, but I think that might have been too ambitious. I think I need to start keeping a journal regularly again; it's good therapy. I started another blog for that reason, but I figured there was no reason to have two. In any case, I want to try to write here more often.
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