Thank Science I'm Alive

I'm still alive. This amazes me at least once a day. Sometimes, I wake up in the middle of the night because my insulin pump tubing twisted around my arm. When this happens, I look down at this little machine and thank science I'm alive. This little mechanical wonder pumps insulin into my body, because scientists and engineers worked together to make this amazing device. To the people who invented the insulin pump, thank you.

Fifteen years ago, I had a tumor the size of a golf ball wrapped around my aorta twice. 

To the surgeon who cracked my chest and spent almost 10 hours carefully removing the entire tumor, thank you. 

To the anesthesiologist who kept me alive through the surgery, thank you.

To the nurses who looked after me, thank you.

To the pharmaceutical companies who created the medications and equipment to make that surgery possible, thank you. 

To my amazing doctors who have kept me alive this long, thank you. I am 15 years into the bonus round of my life, thanks to all of you. I am so grateful people study science instead of theology. If all I had to rely on was hopeful words and salad dressing sprinkled on my forehead, I'd be dead right now. Instead I'm still here, cancer free and amazed. Thank science I'm alive!

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An Open Letter To Parents Against Vaccination

An Open Letter to Parents Against Vaccination,

You love your children. I don't doubt that. The first moment you held your child is etched into your mind. You're choosing not to vaccinate because you are afraid vaccines aren't safe. You've read alarming stories on the internet. You've seen celebrities talk about the dangers of vaccines. Maybe you think they hurt more than they help.

But, there is something else to consider when you think about vaccinations.

When you think about vaccinations, I want you to think about polio.

http://upload.wikimedia.org/wikipedia/en/2/20/Iron_lungs.JPG

Inside every iron lung is a child. A child who was loved as much as you love your child. No longer able to breathe on their own, they lie still inside a machine because of polio. In the early stages, polio cripples the muscles around the lungs. Polio is devastating.

When you think about vaccines, ask yourself, "Do I want children crippled once again by a disease science already conquered?" 

Or do you want to think about this image instead?

http://www.classbrain.com/artteenst/publish/citation_polio_vaccine.shtml

The vaccine came too late for this man, but not too late for your child. This vaccine you are refusing was celebrated around the world. Before the vaccine, everyone knew polio, and everyone knew what it could do. When that vaccine was announced, parents took their children by the hand and said, "Not my child."

http://www.historyofvaccines.org/

They lined up in towns and cities to receive the polio vaccine. Not as a fearful poison, but as a triumph of science and hope. Vaccines aren't here to hurt your child, but to save them. When you were growing up, did you have friends who had polio? Probably not. Because you and your friends were vaccinated against polio. Vaccines saved you, and me, from polio.

Another vaccine you're refusing to give your child prevents a disease called diphtheria. We can go to Wikipedia and look up diphtheria. We can learn all about it in clinical terms. Or we can look at this:

http://lincolnlog1972.blogspot.com

And we can look at this:

http://lincolnlog1972.blogspot.com

Harriet, George, Joseph, William, Edmond, Lillie, Francis and Fredrick Kershaw all died within 17 days of each other from diphtheria. Lillie and her brother Francis died on the same day. Eight children, loved as much as you love your child, all gone in less than a month.

What did their parents go through as they buried child after child? I can't imagine. I don't want to imagine. That's why I vaccinated my child.

What would Joseph and Julia Kershaw say to you about diphtheria, if they knew there was a way to prevent it, and you refused to vaccinate your child? I think they would cry, "Why not?" 

Do you think the Kershaw family wished there was a diphtheria vaccine? It came in the 1920's. Too late for the Kershaw children. But, not too late for these kids.

http://www.historyofvaccines.org/

The diphtheria vaccine didn't come too late for our kids. Vaccines are amazing, but they only work if we use them.

Outbreaks, though very rare, still occur worldwide, including in developed nations, such as Germany and Canada. After the breakup of the former Soviet Union in the late 1980s, vaccination rates in its constituent countries fell so low that there was an explosion of diphtheria cases. In 1991, there were 2,000 cases of diphtheria in the USSR. By 1998, according to Red Cross estimates, there were as many as 200,000 cases in the Commonwealth of Independent States, with 5,000 deaths.

Don't you see what caused diphtheria to return? A lack of vaccinated children. Do you want to go back to a time where classmates were crippled from polio, and entire families died from diphtheria?  Or do you want to move forward into a world without childhood diseases? I know what world I want for my child, and for your child. 

Choosing to vaccinate your child is a big decision, and I know you're afraid. Please look at these pictures again and think hard about vaccines. For more information, get the facts. Please don't fear vaccines because it is trendy, and celebrities talk about vaccines like they are going to hurt your child. If you must be afraid of something, be afraid of polio and diphtheria. Then do the right thing for your child. I'm glad I did.

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Preparing for Chemo

Preparing for chemotherapy probably sounds like preparing to die. The word chemotherapy is frightening. It conjures up images of hair loss, vomiting, and pure misery. Truth is, chemo sucks, but if you're prepared it sucks a lot less.

How do I know this? Because I've been a chemotherapy patient since August 2005. I started with moderately high dose IV chemotherapy on a three week cycle. This lasted until January 2007 when I switched to weekly pills at home. After 23 cycles of IV chemo, and over 365 doses of weekly chemo, I'm an expert at preparing. Tomorrow is chemo day. Since I'm preparing for it, I thought I'd share what I've learned.

Preparing for Chemo

Every chemo protocol is different. They don't all have the same side effects, but a lot of these drugs cause nausea, fatigue, taste and smell changes, and hair loss. So, I'll focus on those.

If your protocol requires several IV cycles, get a port. I waited to get a port and scarred the insides of my veins. IV's don't work for me very well anymore. Everything about ports will be carefully explained to you by your doctor, so I won't do that here. Wait, did I say everything? I meant almost everything.

What no one will tell you is the rubber inside the port might make a popping sensation the first time it's accessed. It didn't hurt, but the pop scared the shit out of me! So, if it happens, don't freak out like I did. It only happens the first time, after that it's fine. The nurse cleans your skin, pokes the needle in the port and it's over. It's much easier than an IV. If you're needle phobic, or sensitive to pain, ask for Emla cream. It numbs the skin like magic. Remember, you don't have to watch what the nurse is doing. Hold still and look somewhere else.

The process of getting chemo might take hours. Sitting in a recliner in a treatment room, attached to a pole, with a pump and IV bags, is stressful. It is also boring as hell. It's not stuck in an airport boring. I mean it is fourth grade, staring out the window on a spring day while the teacher drones on about random bullshit, boring. If you don't have a tablet, now is the time to buy one, or borrow one. Playing a thousand games of Angry Birds, or watching movies, will help with the boredom and stress.

Nausea is a common side effect of many drugs. It's also a scary one because we've all puked and we know it sucks. Your doctor will prescribe a combination of anti-nasuea meds. Some will go in your IV before the chemo meds. Some you'll take home. Once you get home, take your anti nausea meds before you feel sick. If you wait, you'll puke. Trust me. I made that mistake for you so you won't have to. The anti-nausea drugs work amazingly well. If you're still nauseated, talk to your doctor. They'll change the drug combo and help you feel better.

Fatigue after chemo may be profound. I slept off and on for at least five days after each treatment. It might have been from the anti-nausea meds, or just the powerful medications. But, I was knocked on my butt for days. To deal with fatigue, plan for it like you would a trip: pay bills, do laundry, clean the fridge, arrange child and/or pet care. Next, gather food (suggestions later) and prepare a nest. It might be on the couch or your bed. Before your first treatment, figure out a quiet place where you can watch TV and sleep for days on end if necessary. You might be down for days, or up and around the next day. Either way, plan on resting. You've earned it.

Taste and smell changes. Not all drugs do this. If yours does, I'm not gonna lie to you: it sucks. I was smelling phantom scents: chemical smells and rotting smells. Fortunately for me this only lasted a few days after treatment. If you're dealing with altered sense of smell, stay away from scents you normally like. The hand lotion you love will be tainted and you'll hate it later. Avoid strong cleaners, fabric softener, and laundry soap. Remember, the weird smells aren't real. Hopefully it will be only temporary.

Taste changes also suck. My chemo drug made me feel like I was eating metal shavings. The metal taste couldn't be masked with toothpaste or mouthwash, because the foul taste had nothing to do with my mouth. It was in my brain. Sucking on lemon drops helped. Mint made it worse. But, that's me. You'll have to figure out what helps you.

Food choices while recovering from chemo also matter. Don't eat anything you normally like. Once you eat it with an altered sense of taste and smell, you'll end up hating your favorite food. Stick to bland things like crackers, rice, vanilla pudding, and vanilla wafers, with tofu or chicken breast for protein. Ginger ale helps, too.

While I was going through IV chemo, I slept six hours, woke up and ate, slept ten hours, and ate again. It was a week long haze of grazing and sleeping. Then I'd emerge from my chemo cave. My sense of taste and smell was back to normal. The nausea and fatigue was better, too. The worst of it passed and for the next few weeks, I felt much better.

Hair loss didn't go away, though. No one told me my scalp would hurt. My head was sensitive to touch. I chose to wear the softest knit hats possible. What you chose is up to you. Your hair will grow back. Promise. Mine did. We changed the medication from IV to pills and I got to grow my hair.

My weekly chemo routine is pretty similar, only feeling shitty lasts one day instead of the entire week. In a few hours, I'll be back in the chemo cave. Tomorrow I'll feel sick to my stomach and tired. I'll bolus a crap load of insulin through my pump while I eat crackers and drink ginger ale. After 14 hours, I'll eat a bland dinner. The next day I'll wake up feeling much better.

Chemotherapy sucks. There's no getting around that. But, I've learned that planning ahead makes it suck less. I look at chemo like a tollbooth on the highway of life. It's the price I pay for survival. After over 365 chemo days, it's still worth the fee.

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Talking about chronic illness

Don’t talk about it. That is an unwritten rule about chronic illness that I have trouble dealing with. If I bring up my chronic illness, I make other people uncomfortable. If I don’t talk about it, I make myself uncomfortable. Sometimes I want to give voice to my concerns and struggles. Only, I learned a long time ago that no one wants to hear it. To keep peace, I keep quiet.

Talking about chronic illness makes some people feel uncomfortable. I have one of those scary neuromuscular nightmare diseases. It’s the kind of thing that almost never happens to people, the kind of disease that people fear. No one wants to think about becoming debilitated. We want to be independent. Even a toddler wants to do things for herself. Losing independence is frightening. I understand why my illness scares people. I understand why talking about it makes people feel vulnerable and frightened. At the same time, THIS is not imaginary for me. THIS is the most real thing in my life. It’s here in my face, 24 hours a day without a moment off. And I can’t talk about it.

I understand why able bodied people don’t want to hear about disability. If a disabling disease can knock you over, that means it can knock me over, and… and I don’t want to think about that. So, don’t talk about it. As if by keeping silent I can pretend THIS isn’t real. Except for the weakness in my arms and fingers. The insulin pump in my pocket beeping. I have medical devices and medicines that keep me alive but never make me well. Sometimes I wish I could just think myself well. Mind over matter, believe you will be better and presto! Instant health in a minute. Unfortunately, reality doesn’t work that way.

I took a few weeks off from my blog because I got depressed. Depression and chronic illness go together. If I didn’t get upset about perpetual illness, I wouldn’t be human. Because I am human, I am able to conceptualize what life would be like without a chronic illness, only I am unable to have that life. Everywhere I go, I can see other people who don’t struggle with their health. I vividly remember what life was like before I got sick, and sometimes I miss that life so much it aches. I have become old before my time, aware that the sand in the hourglass is falling faster for me than other people. Most days this makes me more aware of how precious life is. Other days, I just get sad inside. When I feel sad inside, I back away and pause to regroup.

During my blog break I took some time to breathe and center myself. I don’t have health. That doesn’t mean I cannot be well. Wellness has more to do with my coping abilities than physical health. Focusing on what helps me cope—reading, listening to music, playing video games, writing, spending time alone in nature—doing these things help me rebound. Talking about chronic illness helps me cope. I need to know that I’m not alone. I need to know that there are other people who wake up, look in the mirror and wonder, “What the hell happened?” I need to know that sadness is normal and makes sense sometimes. I need to know that it is OK to not be OK.

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Divorcing God

When I was a Christianus Sickus, I alternated between asking God for healing, and asking God for strength to endure. I refused to believe my chronic illness was permanent. I looked at all the current scientific research about my illness and studied. If there wasn’t a cure, I was going to find one myself. There had to be an exit. I remember feeling so desperate for a way out that I went half insane. I felt like I was dropped into a deep pit with no means of escape. The life I used to have was gone. I wanted it back. I needed it back.

I started praying, “Lord, heal me.”
Silence.
“Lord, please heal me.”
Silence.
“Lord, I know you love me. Please heal me.”
Silence.

The silence twisted me up inside. I couldn’t understand it. Why wasn’t God answering my prayers. Why the silence? So, I tried something else. “Lord, I want to do your will. Heal me or use me. Tell me what to do.”
Silence.
“How can I do your will?”
Silence.
“What do you want from me?”
Silence

This went on for three years. The more I prayed, the more unhappy I became. People told me God had a plan and if I had faith God would reveal it. Meanwhile, my illness progressed. I felt depressed and hopeless. I read the scriptures people recommended, and felt even more hopeless. There wasn’t a peace that passed understanding. There was an endless silence that left me in tears. After years went by, I got angry. Angry that I got sick and angry that God wasn’t hearing my prayers. If God wanted me to be sick, then I was willing to be sick. I wanted to be a blessed Christianus Sickus, but I wasn’t one. I wasn’t a saint-in-training. I was just me, and I was broken. My faith and my whole life shattered like glass.

 I tried focusing on Christ’s suffering, and uniting my spirit with His suffering. I tried to believe that the suffering of Jesus was beyond anything I could imagine. But, a crucifixion ended his agony. Chronic illness doesn’t always kill you. Sometimes it leaves you alive, but wishing you were dead. I started wishing I would die. My entire life became unbearable. Praying for strength, and healing, only made it worse.

Then I had a flash of insight that changed my entire life. “What if there isn’t a God?” That single thought was like dropping an anvil from around my neck. I felt like I was floating. If there is no God, then praying for healing and strength, and not being healed, or strengthened, isn’t a problem. Maybe my prayers came back return to sender, because no one was listening. If there isn’t a God who planned for me getting sick, then there isn’t anyone to appeal to for a reprieve. If God isn’t real, I don’t have to pretend this is a blessing in disguise. I don’t have to pretend to be someone I’m not. I get to be real. I get to be a human being who is doing the best she can under the circumstances. If there is no God, I can finally be at peace. What if there isn’t a God?

I got terrified by that thought. Of course there is a God. This is the Evil One tempting me. God loves me. I need to get into His word and get right with God. So, I opened my Bible and read it. The entire thing. As I learned more about the God of the Old Testament, I wanted a divorce. That God character was far scarier than I realized. I read about genocides and God demanding the murder of infants. As I read along, I discovered 1 Samuel 15:3-4 was particularly horrifying. Under the 1949 Geneva Conventions, 1 Samuel 15:3-4 is a war crime. Why would I want to draw near a war criminal? After learning about God in the Bible, I wanted nothing to do with religion. Finishing the Bible allowed me to understand that God is imaginary.

Letting go of religion freed me. It gave me peace. I stopped wondering why God allowed this to happen to me. I stopped fearing God’s wrath for not being holy enough. I stopped worrying that I wasn’t doing God’s will for my life. For the first time since my diagnosis, I had something Christianity couldn’t give me: hope for the future.

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Don't Stay Sorry For Yourself

"Don’t feel sorry for yourself." Another phrase people say to shut down my emotions. Is it better to live a lie that makes other people feel more comfortable, at the expense of myself? Of course I feel sorry for myself. My diabetes has been a bitch lately. No matter what I do I have high blood sugars. Low blood sugar can kill me in minutes. High blood sugar is what leads to all the diabetes horror stories. I’m frustrated and angry.

All day long I see people who don’t live like this, people who have no idea what it is like to have their body betray them. I want to trade bodies. I can’t, and that makes me even more frustrated. Sometimes, I feel sorry for myself. Feeling sorry for myself is liberating. When I feel sorry for myself I’m being honest. I’m grieving the loss of my own body. Unlike grieving the death of my mom, there isn’t a moment where I can find resolution. With my mom, I can tell myself, “She’s not suffering anymore.” With my chronic illnesses, it’s not like that. My own suffering goes on.

Of course I feel sorry for myself. When I acknowledge how I feel, I give myself a moment to take the mask off and be real. So many things in life are phony. Feeling sorry for myself makes sense sometimes. When I’m frustrated and unhappy, I allow myself to feel it all. I let it rise into a tantrum when I need to. I let my tears fall. I become my own personal thunderstorm. For a while, anyway. Grief and chronic illness go together. To have a chronic illness is to always be aware of loss.

Telling someone, “Don’t feel sorry for yourself,” doesn’t help. It just shuts down the freedom to be real. Being real is more valuable to me than a fake smile. I did enough pretending when I was a Christianus Sickus, pretending to be beatified by my illness. Now I get to admit that it sucks sometimes, because it does suck sometimes.

Instead of telling myself, “Don’t feel sorry for yourself,” I say, “Don’t stay sorry for yourself.” Wallow for a while. An hour. A day. A month. Even a year if necessary. As long as it takes to let the pain out. Then I can stand back up inside. Self pity is a place I visit, not a place I stay. I don’t want to live in a permanent thunderstorm, raining down pain on myself. I need to build shelters in the rain, because the rain isn’t going anywhere. This blog is my shelter in the rain. If you need a shelter, you’re welcome to join me here.

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Positivity is not a cure

“Keep a positive attitude.” It’s one of those phrases people say to shut down my emotions. A positive attitude is easier on other people. It makes chronic illness seem less scary, and less difficult. Everyone is familiar with acute illness, an earache, flu, or a cold that slaps them down for a bit, but then they recover. Chronic illness isn’t like that and it is hard for people who don’t have one to understand what it is like.

A positive attitude will carry you through a stomach virus, or even help you recover from surgery. But, when there is no recovery, the advice just hurts. The only way I can keep a positive attitude is by pretending that this doesn’t bother me. Truth is, this does bother me. Some days it bothers me a lot more than I let on. A positive attitude doesn’t change my reality. My reality is brutal, like January in Minneapolis. Acknowledging the brutality of chronic illness doesn’t mean I am giving up. It just means I know I am fighting a battle I cannot win. I am free to lament. Free to grieve my losses. It is spring right now and all around me people are riding bicycles. I see them going up and down the street. I live between a park and a bike path. I remember riding a bike. I remember how it felt to push the pedals, to glide down hills with the wind in my hair. I remember riding my bike. I loved my bike. Now it is gone and I am still here. I am here watching people do what I can’t. On this warm spring day I am free to recognize that I feel left out. I am free to feel tears in my eyes. I am free to grieve the loss.

A positive attitude is not a cure. Painting a happy smile and a rainbow over my head doesn’t change the feeling of loss. It just adds guilt to the sadness, because I don’t feel like smiling through the pain. Instead of keeping a positive attitude, and  pretending that everything is wonderful, when it isn’t, I’ve learned to work on balancing my perspective. No, I didn’t sign up for all this. If I had to choose the one person on earth least likely to handle chronic illness well, it would be me. But, I am here. I am alive. I am outside looking at a garden full of flowers. I planted those flowers 15 years ago, three months after cancer surgery. The flowers greet me each spring, reminding me where I’ve been and how hard I fought to get to this place.

The flowers remind me to balance my perspective. I cannot fix what is wrong. I can acknowledge its impact openly and honestly. Then I can lift myself up again. The garden is beautiful. There is still beauty in this world. The beauty doesn’t always out weigh the ugliness, but I’m learning to pause to look for beauty nonetheless.

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Five Ways Atheism Helped Me Deal With Chronic Illness

When I got sick, my church expected me to respond like a living saint. No complaining, no questioning, joyful and reverent… I spent three years trying to live up to their expectations. I went to chapel services and was anointed with oil for healing. As if rubbing salad dressing on my forehead was going to cure muscular dystrophy. The words of comfort they offered were empty. God knows what you are going through. God understands. God cares. Trust in God. Lean not on your own understanding.

Stop. Just stop. I dreaded going to church. Being called Job grated on my nerves. Something had to change. After three years, I decided to stop going to church. I still wanted to hold on to my faith, so I did the one thing no Christian should ever do: I read the entire Bible.  When I started reading, I was a Christian. When I finished reading the Bible, I was an Atheist with a capital A. People assume I am an atheist because I am angry with God for not healing me. That’s isn’t why I am not a Christian. I’m not a Christian because of the verses pastors leave out during their sermons. I read about a talking snake, a magical boat, a talking donkey, giants and unicorns. Many people have written extensively about the craziness that is in the Bible and done a better job than I could ever do. My point is, I read the entire Bible and I was amazed anyone believes this baloney is real. The Bible is wrong about science, and math, and reality. It reads like a book written by desert nomads who were guessing about how the universe worked. It was written by ancient people, for an ancient civilization. It is hard enough for me to imagine life during the American Civil War, let alone comprehend the social and moral rules of a civilization 2000 years gone. Reading the entire Bible cemented my decision to stop going to church.

I stopped praying and started dealing with my new reality face on. Do you know what? It was a relief. Once I embraced atheism, my life improved in these five ways.

1. My emotions belong to me   

By walking away from religion, I freed myself from the pressure to be a Christianus Sickus. Having to be a living saint added a level of pain to my life that I no longer carry with me. When I am sad because my body doesn’t move like it should, I get to feel sad. I get to feel angry and frustrated. I have a progressive, incurable, sometimes fatal, neuromuscular disease. I also have insulin dependent diabetes. Know what? That sucks. I don’t have to pretend I’m OK. I don’t have to put on a happy smile and go to church, nod and smile and laugh when people call me Job. I just get to be me.

2. There isn’t a deeper meaning to chronic illness

I don’t have to search for a metaphysical reason why I have chronic illnesses. I don’t have to figure out what a deity expects me to do with it, either. Not everything that happens to me has a higher purpose. Chronic illness has no higher meaning for me than falling on ice. Why did I get sick? Because I live on a planet where sometimes the lion catches the gazelle. There is no reason why this happened to me. I just know I didn’t cause it.

3. This is not part of a deity’s good plan for my life

If someone deliberately gave a person muscular dystrophy and diabetes as part of a master plan, they would be evil. Progressive, incurable illness, where you get to helplessly watch your body fall apart and then die, is a cruel fate. I don’t have to pretend it isn’t cruel. What is happening to me is tragic, but it isn’t anyone’s fault. A deity didn’t cause this any more than I did. Disease is not part of a master design, but a battle we human beings have been fighting and winning with science. When I inject insulin, I don’t thank a deity. I thank Dr. Banning and Dr. Best. I thank science I have insulin. It is because of science that I am alive.

4. I don’t have to pretend this is a blessing in disguise.

If a mass murder was given my illness as a punishment for just one week, it would be cruel and unusual punishment. Chronic illness is ugly. It makes no sense. Making sense of nonsense and accepting the unacceptable is a way of life for me. This is not a good thing pretending to be a bad thing. It is a bad thing. I don’t have to paint chronic illness with pretty rainbows. I can face reality with courage and truth.

5. I’m responsible for how I respond to my chronic illness

This is a huge gift to me. I’m free to respond to how my illness impacts my body, cognitive abilities, and emotions. I don’t have to wait for rescue from on high. I can rescue myself right now. My life is not over. It’s different from what I expected, but still worth living. I’m happier now than when I was a Christian. The enjoyment I get out of life is simpler and more pure. It’s not hemmed in by platitudes. Life is messy and doesn’t always make sense. That doesn’t mean life isn’t good.

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