Vaccines and One Other Thing

I haven't posted in a long time, even though there is stuff I want to write about. Although, some of the stuff I want to write about I can't really make public for a variety of reasons. How's that for vague? Anyway, I just wrote this on Facebook and figured I'd share it here as well. The post is referring to this article: http://www.vaccinestoday.eu/vaccines/how-measles-can-change-a-life/


I'm sharing this article for two reasons. The first is the overt idea of herd immunity. Herd immunity occurs when everyone that can get vaccinated does, which then protects all those who cannot get vaccinated because of allergies or age. This is extremely important. The parents in the article say it best, "But what drives us crazy is the fact that all of this could have been avoided, had obligatory vaccination protected more children from getting infected by measles and that other dangerous “childhood” diseases." Their son could have lived and  been healthy. "If only" is a terrible thing to live with.

The other reason is secondary. When the parents were told that their son would not live, there was no cure and no hope, they turned to quackery. Everyone can understand this and nobody can blame them.

In their own words, "We were numb, desperate... the doctors were telling us that we would lose our child – no matter what. We spent nights on the internet seeking for rescue, for some sort of treatment that would stop us from going down the path of the inevitable. We established contacts with medical scientists in India, Turkey and the US. We imported homeopathic medicine from India; we applied ß-interferon, vitamins, fish oil, minerals..."

This is something that makes me so angry I want to cry. There are people out there who will try to sell you anything, and say it will cure everything. I know this, because my parents went through this. They were desperate and spent hundreds of dollars on remedies that did nothing, because they desperately wanted to cure their little girl. Guess what? NONE OF IT DID ANYTHING. It's all bullshit.

A lot of people say, well it can't hurt to try. That is also bullshit. It deprives people of money they often don't have (and think about how that money could have been spent to make the life of a loved one better in a meaningful way). The money that people spend in their desperation gives the illusion of legitimacy to the remedy and the person selling it (if other people spent money on it, there must be something to it), and it gives the person selling this crap the resources to continue selling it. Worst of all, it gives false hope. There is nothing wrong with hope, but false hope is extremely hurtful. If someone tells you that they can save your loved one, how would you feel? Elated, joyful, thankful, grateful? How do you feel when you realize that not only did the treatment not work, but it had no chance of working, and that someone decided that they wanted to make money from your desperate bid to save the  life of someone you love by selling you nothing? I know how I feel about all those people who took my parent's money. Angry, extremely angry. How dare they?! What kind of person does that? What kind of person tells a parent that they can save their child, no problem, just buy this bottle of pills or vial of fluid? I'd like to say knowing full well that it won't, but I know some of these people, somehow, honestly think that they can help, even with the flimsiest of evidence. It's wrong, and I wish there were stricter laws about what you can claim something will do for someone's health, because consumer discernment cannot be counted on when the life of a loved one is a stake. The false hope that these people sell just adds insult to injury.

I feel the need to point out that I am not against naturopathy necessarily. There are a lot of "natural" remedies that work. I put natural in quotes because everything on earth is by definition natural. Anyway, there are proven medicines outside of the medical system (I'm not sure what to call it, western traditional medicine?). Notice I say proven. There must be evidence from science and this most often comes from legitimate peer reviewed scientific research. Of course, there isn't always that kind of research out there for everything, so sometimes you do what works for you. However, steering away from fads and what the current incarnation of Dr. Oz recommends is a good idea, because usually that is bullshit too. If I'm not sure about something I consider the source, and ask someone more knowledgeable and reputable than myself.

There is so much information out there now, it's hard to know what's real and what isn't. If it's too good to be true it most likely is not true. Chinese medicine cannot cure your cancer, etc.

Sorry for the rant, but this is something I feel very strongly about. People still offer cures and treatments for me that are outside the scope of what could possibly improve my condition and frankly, it pisses me off.

Casual Violence

I just saw a cartoon someone linked on facebook that went like this (bear with me, I have a point):
A man carries a beat up woman into a hospital.
Doctor: Holy shit! What happened?!
Man: She played fifa
Doctor: Did she lose?
Man: Yes.
Doctor: Then, I don't understand.
Man: It was my account!!

So, obviously, this man beat the shit out of this woman, because she lost a game on his account. It's supposed to be funny. I looked at the comments and a woman posted "Reported". The comments below hers are typical misogynistic, take a joke bitch, type stuff. I liked her "reported" comment and then thought, you know, I am going to report this too. A cartoon that makes it look like violence against women is okay is totally not cool and I am going to stand up too.

Now that I've reported it, and posted in support of the other person who did, why do I feel weird? I feel like maybe, I might get in trouble, or that I am being too sensitive or lack a sense of humor. I know that's not really true, but, I really feel like I should duck and cover or something.

Psychology Today - Personal Version

I am taking a class on a website called Coursera.  It's free and the classes are put together by professors from some pretty impressive universities.  The class I'm taking right now is Introduction to Psychology.  A recent lecture talked about the "locus of control".  It's basically a term that talks about how much you feel you can control the world around you.  If you have an external locus of control, you feel a lot like the world is controlling you and you don't have much ability to shape the world around you.  If you have an internal locus of control you feel that you have a lot of influence over your life and the world around you.  Many people with an internal view are very positive, tend to be leaders; whereas people who have a strong external view tend to be depressed.

I wrote a post on the class forum about locus of control and my feelings about it in relation to my life.  It's much more personal than technical so I thought I'd share it here as well.

Locus of control is a weird balance for me.  I am disabled.  I have a genetic, progressive muscle condition, and over my life I will get weaker and more fatigued.  I was diagnosed at 14, and told I would die in my early twenties (I'm now 37).  There is very little in the way of treatment and at my stage of the disease what became available did not help.  I stopped walking in 1999.  Now I have very little use of my body, except my hands and my brain.

Relating that to locus of control.  I have zero control over my condition,there is no cure, it will always get worse.  I often have little control over what kind of medical technologies I can access.  For the most part, I have to accept what the government will fund or what a "charity" will reasonably decide to fund.  There is incredibly technology out there, and most of it, especially the newer stuff, I will never have access to.  Money talks and anything medical needs a loud voice.  Another thing I have no control over is how tired I am.  It is variable from day to day, some better than others, but I know that I need to be in bed about 13 to 14 hours of the day and sleep somewhere between 10 and 12 of those hours.  I had to give up the dream I had since a child of going to university and getting a PhD.  I don't have the energy for a job. I am on social assistance, which means I'm poor.  Leaving the house for several hours is guaranteed to tire me out enough that I need to plan an uneventful day the day after.  I can push it, but I will pay.  I don't know if anyone has seen the website about chronic conditions that has the "spoon theory", but it's worth a look. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/  I need full time caregivers, I can't wash or dress myself.  I need help to eat.  I can type, crochet... so use my hands in a very prescribed way.  All of these things, and more, I have zero control over.  My own body has betrayed me and trapped me. This is all external and some days I feel like all these things are done TO me.  I often feel like I have very little to do with what happens to me.

Now, what can I control?  First, I can control my attitude.  I live daily with massive amount of frustration, anger towards myself, anger towards the system... I realized, though that I could live my life as a miserable bitch or I could try to do the best with what I have, and the fact that what I have will always change (physically, always for the worse).  People don't want to be around a miserable person, I don't want to feel miserable all the time, even though I suffer from depression and anxiety.  I chose that I would continue to use my brain as much as possible.  I read voraciously, non-fiction and fiction.  I can't go to university, so I will try to be self-educated.  I wanted to produce something useful, to do something so people would remember me, so I re-learned to crochet.  I can use my hands enough for that, so I always have a project on the go and give most of what I make as gifts (though I have had a few commissions).  It's very satisfying to produce a useful product.  This is my internal locus.  These are the things I CAN make choices about.

I have also been lucky.  I have parents that decided that putting me in a home would be the death of me mentally and physically. They were right, I have stayed in one for six months.  It was hell.  I've been lucky over the last 6 years.  I thought I would be dead by now, but instead I have met the love of my life, made friends outside of online chat rooms and socialize with people that care about me.  In the last 3 years, I was able to move away from my parents and be with my partner.  I think this upturn is in part my will to keep trying and luck in finding the right people. I think all these external things, things I often feel kind of fell into my lap, are things I couldn't control.

So, locus of control. I know they affect each other, and sometimes they intertwine. (Luck at meeting someone who is willing to be with someone with a severe disability, but my intelligence and personality helped us have a loving relationship). There are a huge number of things I have no control over and will never have control over.  This has been imposed and is not fixable.  However, I also have chosen to make the most of the things I CAN control.  I will continue to try to make the best of what I have.  I will continue to try. It is extremely hard everyday.  If you watched the videos with Phillip Zimbardo about evil and heroes and how people can be either, but they are usually ordinary people; that's how I feel about myself.  I am an ordinary person and I'm not looking for sympathy here.  I just wanted to share my thoughts on how locus of control, for me, often feels like a strange thing that I have to struggle with quite a bit.

Me

“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

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.

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.

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.

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.

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.

Assistance

What is with people and these pictures saying things like, "I work and pay taxes, so people who could work can collect welfare", or "We should drug test everyone on welfare"? I find these statements to be ridiculous and insulting. First of all, welfare is crap, you are below the poverty line, and the majority of people do not want to be on it. Second, if you can work they make you find a job. You can't just sit around and collect money just because you feel like it. Third, YOUR taxes don't pay for welfare, EVERYONE's do.  Just like you don't pay a policeman's salary (I never understood this, police pay taxes, so are they paying their own salary too?). Finally, there are very few people abusing welfare.  The last stats I saw were 1% or less. Now, for the drug testing. First of all, this would be incredibly expensive. The amount of money you might save by kicking people off welfare for testing positive would be a tiny fraction of what it would cost to test people. Plus, if someone did test positive you'd have to prove it was illegal and not some kind of medication. Opiates in particular show up as just "an opiate"; the person might be taking cough medication with codeine.  This would have to be investigated, and huge amounts of money would go into figuring this shit out.  What would you do with someone who tested positive?  Kick them off welfare?  Those people would end up homeless, in hospital, in prison or some variation of the three quickly. Providing those services cost much more than a welfare check.  Finally, who the fuck are you to tell people how to spend their money?  That woman buying ice cream with food stamps might have a kid at home with a birthday. If you are on welfare your life is probably crap, so why can't they live on ice cream or cake if that's what gets them through? Why do you care if they smoke, or drink, or whatever it is they do, to make their life bearable?  You personally did not hand them money, and you personally have no right to dictate how someone lives their life. What's next?  I know people who won't like this, and I say too damn bad.  If the government feels that someone doesn't deserve a welfare check, let them deal with it. There needs to be thinking about practicality. Practical things like, what is the ACTUAL number of people abusing government assistance? What are the costs of implementing restrictive laws? Welfare is a last resort for most people. Do you really want to put people and their families out on the street? What would that accomplish and how can you possibly justify it? But for the grace of god, go I.  People on assistance are not OTHER, they are normal people whose life took a shitty turn.  It could easily be you.