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!


Chronic Illness And Anger

When I was still attending church and trying to adjust to a chronic illness, anger was unacceptable. To feel angry was to deny God’s sovereignty in my life. I was told to submit to God’s will and trust Him. The mental gymnastics required to feel angry, but express happiness, tore me apart inside. 

What I wanted to say, needed to say, remained bottled up. I smiled on the outside. I listened to the scripture verses people quoted. I listened to the holy cliches. The more I listened, the more conflicted I felt. I felt crazy, until I left religion. Funny how letting go of my faith allowed me to gain my sanity.

I am so glad I don’t have to pretend to be someone I’m not anymore. Truth is, I'm angry. All day long I see people who don’t have to deal with muscle spasms and weakness. I vividly remember a life I no longer have. Of course it makes me angry. I have one of those neurological nightmare illnesses. The kind of thing people fear getting. What helps me deal with my anger is acknowledging how I feel without sprinkling it with sugar.

I’m angry, but the Lord knows everything.
I’m angry, but I know God has a plan.
I’m angry, but I shouldn’t feel that way.

No more of that. I’m a human being and I get to feel angry. When I feel angry, I don’t have pretend I don’t feel it. Instead, I recognize that feeling pissed off over chronic illness makes sense. Sometimes I get mad because I have to deal with symptoms, but most of the time I get pissed off over the word, incurable. I hate that word. Incurable. 

Synonyms: Remediless, Unrecoverable, Cureless, Hopeless, Fatal

Venting anger by yelling and screaming tends to make me more angry. Some people can vent their anger and get it all out, but that doesn’t work for me. I just explode. The safer way for me to get rid of my anger is by defusing it. I can write about feeling angry, or listen to angry music. I can play violent video games. When I am angry, I express it without fanning it into a rage. I don’t want to spend the rest of my life having a temper tantrum. I could. I have a thousand reasons why I could yell and scream all day long. I just don’t enjoy feeling angry. It’s exhausting. 

I’ve learned to express my anger for a while, and then back away from it. I back away by doing things I enjoy. I change the music I’m listening to from angry to quieter and more upbeat. I’ll play a different video game, one with less violence, and more laughter. I’ll binge watch something funny on Netflix. Other times I back away from my anger by spending time with friends and family. Or knitting. Or being with my dog. Or reading a good book. Or just sitting outside in nature. 

I give myself permission to lose my temper. I also give myself permission to quiet back down. Giving myself permission allows me to live a quieter, and much more peaceful life. Chronic illness isn't going anywhere. It's not going to stop making me angry. It's not going to stop me from enjoying my life, either.

What do you do with your anger? Do you have any special ways of defusing your anger?


Call Me An Unholy Roller

I'm not a socially outgoing person. I freely admit, I have taken out my cellphone and pretended to get a call just to avoid talking to people. If I can get away from strangers without saying a word, or even having to wave, I consider this a successful outing. 

I saw them in the park. Two women walking together. Both had hair long enough to sit on. One wore a pale blue kerchief covering her head, and the other wore her hair pinned back with barrettes. They both wore long denim jumpers. They saw me in my powerchair and they practically tripped over themselves to get close to me.

"Have you asked Jesus to heal you?"
"Do you know the Lord?"

Are you fucking kidding me? 

"Do you have a church home?"
"You should come to our church. We have a healing ministry that does miracles."
"Yes we do. You could be walking right now if you had the faith the size of a mustard seed."
"Have you asked the Lord Jesus into your life?"

One woman touched my powerchair! One woman touched my arm! Both women raised a hand in the air and began praying. "Oh Jesus, heal this poor woman. Oh, Jesus, heal her. We speak a healing in the name of Jesus. We rebuke the demon of lameness. We rebuke the demon in Jesus name! Ora-manda-anda hona-krabbandi. Or-han-on-lomoni, lokora-monda..."

What the actual fuck is going on? Why is this happening? I cringed and tried to figure out what to do next. All I wanted, was to go to the park on a beautiful day. Suddenly I was being prayed over like I went to a Benny Hinn revival. The most ridiculous part of this misadventure is, it wasn't the first time. My powerchair is a magnet for super Christians. 

Total strangers have no problem walking up to me and asking if I've accepted the Lord, or if I want to go to their prayer meeting. I've been invited to healing services. They will touch me and pray for me. They will "God bless," me. I want to tell them all to shut up and leave me alone. But, my parents installed Manners in my operating system, and then set an encrypted password so I can't uninstall the program. 

When these two women in the park finished praying, they told me their church raised people from the dead. Excuse me? Raised people from the dead? In 2014? Seriously? And that was supposed to encourage me to go with them to church? All I wanted to do was get away as fast as my batteries would take me. I was so irritated, but I didn't know what to do.

What pissed me off the most was, they didn't see me. They saw my chair and made a list of assumptions about me, and none of them were right. My powerchair is not a symbol. It is a tool. Glasses are for eyes. Wheelchairs are for legs. That's the only difference between them. Would these women have walked over to a person wearing glasses and pawed them? Would they have put their hands on their faces and babbled nonsense in Jesus name? Of course not. But, because I use a chair that makes me fair game?

Assuming I need healing because I am using a wheelchair pisses me off. If I am using a powerchair, I'm having a good day. That means my neuromuscular disease is attacking my legs today. 

What I want to tell people who assume I'm suffering because I'm using a chair is:

If I am using a wheelchair, I can breathe today.
If I am using a wheelchair, I can feed myself today.
If I am using a wheelchair, I can brush my hair today.
If I am using a wheelchair, I can speak today.
If I am using a wheelchair, I can use my computer today.
If I am using a wheelchair, I can see today.
If I am using a wheelchair, I can drive today.
If I am using a wheelchair, I can play music today.
If I am using a wheelchair I am having an absolutely kick-ass, awesome day.

I don't need my legs to work. I need my arms. I need to be able to breathe. I need to be able to chew, swallow, speak... Of all the muscles that muscular dystrophy weakens, my legs are the least important. Wheelchair days are the best days. I can't always see, chew, swallow, breathe comfortably, or move my arms. Days when I can are good days. Having strangers assume I am suffering because I use a wheelchair drives me nuts. If you must assume something about a person with a disability, assume competence. 



Sooner or later, I'll run into more tongue-speaking super Christians who want to touch me and heal me. The suggestion, "Climb out of your chair and praise the Lord just to screw with them," isn't my style. Can you help me figure out what to do next time instead of cringing? What is a polite solution to a rude problem? If you have any suggestions, or just want to commiserate, please leave a comment. Thanks!


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.

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?

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."
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:

And we can look at this:

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.

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

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.


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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