Category: Stress

The Financial Cost of ALS

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by Rachel Doboga

My mother taught me it’s not polite to talk about money, politics, and religion outside close friends and the nuclear family, but as it’s ALS Awareness Month I want to make clear the monetary cost of the monster inside me.

ALS is often called “the bankruptcy disease,” and with good reason. The finances behind maintaining a decent quality of life are devastating at $250,000 a year. I have survived 8 years next month. Do the math. That’s $2 million.

This is where Medicaid and Medicare step in. I also believe I could not have lived this long without three very lucky factors.

First, I bought into private long-term disability insurance at age 24. This was through my first teaching job right out of grad school. One of my colleagues thought I was wasting my money and let me know. “You could go to the movies with that money!” However, my parents drilled into me “Better safe than sorry!” so my husband Evan and I let Hollywood pass us by.

Second, when we moved so I could be treated at a world-class clinic, we just happened to move into a state with amazing programs for people with disabilities. For example, a housing program gives interest-free loans up to $50k for down payments for first-time disabled home buyers with 10 years to pay it off.

Third, much to my shame, we rely heavily on the generosity of our families. We could never thank them enough for their support. This is hard for me to accept because I have always prided myself on being independent. I got my first job at 15 as soon as it was legal to work and before that I was a companion to a girl with autism.

For my first job, I worked at a cinema cafe, but I couldn’t get anything right. They tried me as a waitress, but I kept dropping things. Then they put me in the kitchen, but I kept messing up all the recipes except the fancy salads.

However, I was committed to working and, oddly enough, my boss was committed to keeping me. I was so friendly and sweet that he didn’t want to fire me so he made up a position for me. I was hostess, and my job was to vacuum the lobby and clean the toilets. My grandma was horrified but my parents were proud of me because I stuck with it to earn money to travel one day. At $7 / hour, I watched my savings account and independence grow. I eventually used the money to go to Russia where I met the love of my life. Relying so heavily on others makes me feel awful and ashamed.

On the Other Hand

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It can be hard to “live my truth.” Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle.

Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral baclofen, which, remember, is heavily sedating. Being sedated is different than being fatigued because I can’t fight it. Chemicals overtake my body and my will. They rush through me, making me heavy, blurring my thoughts. I take baclofen four times a day. It knocks me out for two hours. Being unconscious so much hurts my mental health, relationships, writing, and hope.

I say “being unconscious” because being sedated isn’t always the same as sleep. I sometimes wake up fully rested, ready for an hour of activity before it’s time to pass out again. However, sometimes I wake up feeling like I have only been out a second. It’s disorienting to say the least.

Everyone, from caregivers to family, is overjoyed when I am awake, and they all want to see me. I should be flattered and feel loved. Instead, I feel pressured. Imagine if, as soon as you wake up, whoever is near you is full of energy and ready to play. When I wake up, all I want is a few minutes to myself to check my email, catch up with Evan, maybe send a few texts – all the things you do to slowly come back to the world in the morning. Because it is perpetually morning for me. In an ideal world, whoever finds me awake would express their joy, then ask if I need a few minutes. I think that would help reduce the pressure I feel and make me ready to fight through my discomfort like I decided to in my last post in order to be present for the people who love me.

I’m beginning to fear I will always need the baclofen, that the pump will never work. I honestly don’t know how much longer I can handle this. Choosing hope is harder with each failed bump.

But I know I will go on because I have no other choice. I have up to three years before my lungs fail, and even if I live like this, the time I steal with Evan makes any amount of suffering worthwhile.

The Art of Car Crying

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This one goes out to all the people who can’t cry at home. Whether you are trying to be brave for a loved one or just don’t have the space or privacy to cry at home, I hope this gives you some relief.

Step 1: Park your car somewhere safe, like the edge of a parking lot of a big box store or an off-season community space, such as a pool or tennis court.

Step 2: Be aware of your surroundings. If someone approaches you looking concerned – which has literally never happened to me – don’t roll down your window, just wave them on. They are obviously a carjacker.

Step 3: Let it all out. If you have trouble getting started, listening to sad music usually works. You can also try a crying playlist. This one has 118 songs. 152152149153 This means that if one doesn’t work for you, you can click next until something hits you.  I have included my favorite tear-inducing tunes below.

Step 4: You’ll know when you are done because your mind will start to wander to something unrelated, like if you have enough lettuce for dinner (don’t worry about it; no one really likes lettuce). Also, your breathing will even out.

Step 5: Take ten deep, slow breaths, counting to four as you inhale and six as you exhale.

Step 6: Carry on.

These are my top three go-to songs for crying. The first one completely wrecks me because I always think of my husband Evan. Indie, country, pop – there’s something for everyone (probably).

 

 

 

Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)

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I have never really been one to get excited about New Years. Early on, my mom instilled in me a lasting fear of the hordes of drunk drivers careening about all night. I am now 30 years old, and to this day, I have never been to a New Years Eve party I couldn’t walk to. I will probably continue this habit for the rest of my days because no one can prove that it hasn’t saved my life.

Rachel does a Sparkler Dance

2006 ; The acceptable distance to a New Year’s Eve party = My front porch

As for New Year’s resolutions, I remember my dad saying every single year, “I don’t see the point of making resolutions. If you need to make a change in your life, don’t wait. Do it immediately.” This advice, combined with my perfectionist tendencies, made me a reflective, proactive individual.

Lately, though, I have been thinking about the value of making resolutions. I still agree with my dad’s advice because, frankly, if you’re only taking stock once a year, you’re not living your best life. However, when everyone around you is examining their lives and discussing changes they want to make and goals they want to set, a uniquely supportive environment forms. If you randomly tell someone at any other time of year that you want to be better about keeping in touch with family or watching less TV, you just don’t get the same reaction as you do if you share those goals as resolutions around New Year’s. This time of year lends gravity to decisions. It signals that this is a Big Deal to you, which can elicit bolstering enthusiasm from your social circle or prompt advice and conversation. Best case scenario, you may end up with a resolution buddy who loves your idea and hops on board. Having someone to help you through rough patches, prevent backsliding, and celebrate successes with can make all the difference in the world.

Because mental health is on my mind more and more, I have been thinking about what gets me down, what triggers my depression and PTSD, and how I handle (or more accurately, don’t handle) stress. I began research new-to-me ways to improve my mental health and maybe even my physical health as a result.

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This NY Times article offers suggestions on ways to be healthier in 2018 that even those of us with ALS can try. The ones that appealed to me the most were:

  • GETTING BETTER SLEEP 147154 – There is a LOT of information on this page. It is divided into five sections, which you can navigate by clicking on the submenu text immediately beside the title in the black bar. Or you can just hit the down arrow. I especially liked “How to Wake Up,” which is nested under the section called “Morning Lark or Night Owl.” (See what I did there? Nest? Lark? Owl? You’re welcome.)
  • CONQUERING NEGATIVE THINKING 151155 – The art of acceptance is a tough one to learn, but if I want to stop the cycle of dark thoughts that keep me up at night, I better start learning.
  • REDUCING STRESS 151156 – Whatever your anxious little mind likes to obsess over, from relationships to your health, there’s something here to help. Now the key is not to stress about reading this whole article.

One of the ways that the article lists to decrease stress on the body and mind is yoga. That may seem impossible for many of us with ALS, but chair yoga is real thing. I recommend exploring video guides on YouTube by searching “gentle chair yoga,” which will yield countless results. I especially enjoyed this ten minute wheelchair yoga video. The neck stretches felt heavenly (using the Tobii requires me to keep my head very still, and after a few hours of writing, I get vicious neck cramps).  I could not actually do most of the movements because I can barely move my arms, but I think a caregiver could help me. I’m super excited to see if I can get in Eagle Pose. Before ALS, that was my favorite way to ease back pain. Note: it  is important that you do close your eyes when the instructor tells you to. This will allow you to focus on the sensations of the practice.