Friday, June 23, 2017

Killing Me


I usually don't post about political things, but reading about the proposed healthcare bill that would replace "Obamacare" terrifies me. Should our current healthcare system be replaced by this atrocity, it could kill me. And others. Literally.

The majority of people on Medicaid are disabled, elderly, mentally ill, and children. I've read a lot in the past couple days about any cut in funding putting these people at risk. At risk of what, they don't usually spell out, so I'll do it for you. It puts elderly people, children, mentally ill people, the otherwise uninsured, and disabled people at risk of getting more ill. At risk of dying. 

Should I lose my Medicaid, I would not be able to afford health insurance. It would mean going off of the medications that I take that keep me functional, because I wouldn't be able to afford them. If I go off of these medications, I will no longer be able to walk. My joints would deteriorate to a greater extent, and quickly. It would be difficult for me to get out of bed. My autoimmune liver disease, which is at bay thanks to these medications, would rear its ugly head and could eventually necessitate a liver transplant, which I would also not be able to afford.

Losing Medicaid could kill me, slowly and painfully. 

For those of us who could possibly lose health coverage, the results could be devastating.  We could be refused treatment due to the regulation of which medications we're "allowed" to take or a cap on the cost of medications covered. Or the state could decide that insurance companies are no longer required to provide health insurance to those with pre-existing conditions, as that decision would be left to each state to decide, if I'm understanding correctly. 

I didn't choose to have a particularly aggressive case of psoriatic arthritis, ankylosing spondylitis, autoimmune liver disease, Hashimotos thyroidosis, celiac, OCD ... am I missing any? I planned on going back to work. Instead, I struggle every day to get out of bed and to keep moving, even with treatment. I give back through volunteer work, which would also become impossible should I go off of treatment for my illnesses. 

Disabled people do not choose to be disabled, nor do people with Alzheimer's or dementia or clinical depression or bipolar disorder choose how their brains work, nor do those children born into poverty choose to not be able to afford health care. Many people are one health crisis away from needing assistance themselves. 

The solution to this health care situation will not come about through the current administration's plans. It will, in fact, be made worse for the most vulnerable among us. 


Sunday, June 18, 2017

How Old?

Sometimes birthdays catch me off guard.

Yes, I knew Haley's birthday was coming up - that it's today. We got her a gift and planned a (albeit joint birthday / graduation / Father's Day) celebration. What I failed to do was wrap my brain around the fact that Haley is fifteen today. 15. One year away from sixteen. How the heck did that happen? How is my third child that old???

Looking back over the past year, I came to the realization that most of the highlights of Haley's year have involved performing in some way shape or form...

In Androcles and the Lion at Camp Calumet Drama Camp:


In Epoch Arts' Mini Production, Collide, in which she got to create her own character and write her own part:


In Haunted House (at Epoch Arts, of course!):


And made leaps and bounds in creating SFX make-up gore:


 In Epoch Arts' Arts Response: Responding to Hate with Love in which she sang "Losing" by Tenth Avenue North and in Dinner Show, in which she sang "Light in the Hallway" by Pentatonix and did a Jabberwocky skit.


She did have fun with friends at Lake Compounce, Mystic Aquarium (what an adventure the first time we attempted to go!), and other places: 


And most recently she played Finn, Seeker of the Snagglelump, Tooter of the Trumpet, Tamer of Deegan, Clanger of the Cymbals...in Epoch Arts' Mainstage Production, Unfinished People:


Haley amazes me every day with her ability to overcome joint pain and exhaustion in order to accomplish all that she does. Her bold creative spirit inspire me every day to overcome my own insecurities, step out of my comfort zone, and do crazy things like use the sewing machine. One of the things that I admire about her most is that she is fearless in her endeavors and jumps in with both feet - whether it's performing, crafting, special effects make-up, or cooking amazing things from scratch, without a recipe, and with whatever happens to be in the fridge at the time.

Happy 15th Birthday, Haley!!! May you always remember that the Snagglelump is always with you and to stay connected to something bigger. I love you! 







Wednesday, June 14, 2017

Beautiful Things


In celebration of Pastor Wayne Gollenberg, on his retirement....

Endings are emotional and difficult ... and exciting, as they are also beginnings.

As you begin this next exciting time of your life, I find myself having difficulty expressing the appropriate amount of gratitude for your presence in and impact on my life over these past fifteen or so years. What is stunningly clear to me is that you have been the vehicle through which God has done many beautiful things, not only in my life, but in others' lives and in our Church (a people, not a steeple).

Many people may see your retirement- your leaving our congregation - as painful, a loss. We will all miss you and all you do for the Body of Christ. It seems to me, though, that some are missing the fact that in many ways you will remain a part of all of us, and a part of our Church, always.

Over the years, you have time and again preached just the sermon I needed to hear at particularly low or stressful times. Consumed with worry over overwhelming financial, health, and personal struggles, I found myself getting my young children up and ready for worship one Sunday morning when I'd have rather just stayed in bed, in misery. I cried the entire drive and barely pulled myself together and into the fellowship hall for worship. As the words of your sermon washed over me, so did peace and an understanding of just how much God's love was continuing to work in my life, even through times of trial. That was the first time I fathomed the depth of God's grace and the words, "don't worry, God is with you." It was truly life changing for me.

Thank you for Tuesday Night Sunday School, which is the reason my family started regularly attending worship. And for inviting parents to Confirmation class, as I needed it as much as my children did. The vast amount I've learned through both ministries has come into sharp relief as I navigate my way through the School of Lay Ministry. Thank you for being such an involved, in tune, and inspirational teacher.

Somewhere along the way I found your suggestion of "wouldn't it be great if we had an interpretive movement performance of It's About the Cross after the pageant" had somehow turned into me heading up the Interpretive Movement Ministry at OSLC (which still needs a shorter name!). Not that I mind, as it's a wonderful "I get to" in my life.

Thank you, Pastor G, for you...and for doing so many beautiful things during your ministry at Our Savior Lutheran Church. We will miss you immensely, but the beauty of your works and your words will remain with us and in us.

Tuesday, June 13, 2017

The Cost of Living


I could minimize the pain I experience, the exhaustion, the migraines, and the overall ill feeling that clings to my being. I could choose to avoid doing things that wrack my body with pain and necessitate days of recovery time afterwards. I could merely exist.

I choose to live. I choose to pay the quite high cost of living in this body. I choose to pay the price of pain, nausea, fatigue, even pain-induced panic attacks in order to live life to the fullest.

Every day I weigh the cost of doing anything from mundane tasks to fully investing myself in a day full of theatrical rehearsals, the care and keeping of a horde of teenagers, and doing daily mom things. At times, a trip to the grocery store necessitates rest for the remainder of the day. Other times, I can keep going all day ... or for a few days ... and then spend two or three days, sometimes a week, paying back the debt of energy and body use.

The wrench in the works is that I never know how much I have in my being-a-functional-person bank each day. Some days I start out feeling like I can do everything on my to do list and then some, only to find that halfway through my second errand that I'm about to pass out from fatigue or pain. Other days I feel like my stores are beyond depleted, yet rally toward the end of a day of relative rest.

The constant uncertainty makes every day an adventure, although most days, not the adventure I'd otherwise choose.

Not long ago, tech week for Unfinished People - an original play in which two of my children acted and for which I did costuming, made props, and various other things - engulfed my life. We had rehearsals daily for a week, followed by three performances. The same week, I spent at last fifteen hours working on a book of remembrance for my pastor, who retired on the day of the last Unfinished People performance, as well as leading an Interpretive Movement Ministry performance, needle felting twenty caterpillars for cast gifts, and trying to balance daily living, five children, running a household, and getting enough rest so my body wouldn't shut down.

Things were going ok until Thursday, when I had a migraine that nearly caused me to cancel all plans for the day. Thankfully some ibuprofen, caffeine, packing my head in ice, and taking a nap helped me on my way. An increase in medications that keep me moving made the rest of the week and the weekend possible. 

And then there was this past week. I was barely able to get out of bed for three days. The first day, I didn't get out of my pajamas. I managed a trip to the grocery store the next day, a trip to the thrift store another, and another couple errands day four. I still haven't made it back to relative normal, but should in a day or two. 

This is the price I pay for doing what I love. And that's ok. Along with scheduling doing things I love, I schedule time to recuperate from said things. This is my life, and I choose to live it, not just go through the motions, even if the cost of living is high.