Stressful Realities

We are facing stressful realities at our house. A week ago my husband Steve's mother fell and broke her arm. The fall also broke her rib. Ruth has a pulmonary embolism and congestive heart failure. Ruth is 91.

She took a turn for the worse last Thursday a few hours after Steve talked to her on the phone. Steve's older brother Jay lives in Virgina, so he hurried down to Florida. We have been talking to Jay on the phone every few hours since Friday.

Since she fell, Ruth has been in the hospital. A C-pap machine helped her breathe, but it made her miserable and she kept trying to take it off. Over the weekend Steve, Jay, and Ruth made decisions about what to do next. It was decided Ruth would go back to the retirement community where she lives and begin hospice care in the nursing home. Ruth isn't taking any more medications, and the dreaded C-Pap machine is gone. A few hours ago an ambulance arrived to take Ruth to the nursing home. I am waiting for Jay to call me with more information once they arrive.

Steve and I are planning on driving from Illinois to Florida in a few days to give Steve a chance to say goodbye to his mom in person. At the same time we are also waiting for the call. The one that starts with, "I'm sorry," and ends with my husband in tears. We have no way of knowing if we will be traveling for a last goodbye moment, or a memorial service. All we know is we're going to Florida soon. I'm doing my best to support Steve as he goes through this. It's been stressful.

I'm sad for Steve and his brother Jay. I'm also sad because my relationship with Ruth was complicated and I wish it wasn't. Now it will never be what I wish it could have been. This is a difficult time for all of us, but especially for Steve. I can't take Steve's pain away, but I can be with him and love him in it.

I won't be online much in the next few days. There is no internet access at the nursing home in Florida. It's so isolated there isn't cell service, either. Should I get a moment to go online, I'll update my blog then. Thanks for reading along. Your support means a lot to me.

Duet

This afternoon I was practicing cello. After warming up I played Irish folk songs and symphony themes. Then I started playing Bach. There is something magical about Bach's Six Unaccompanied Cello Suites. Every time I play them I get the feeling, "This is what a cello is for, and this is why I play."

I was playing Suite One, Prelude in G major. (It sounds like this.) I love this piece. I learned it when I was 11. It's one of those pieces of music that takes a month to learn and a lifetime to master. Today while I was practicing I got caught up in the music. I felt joy and bliss and then...

I heard XPU my insulin pump alarm in my pocket. A duet for cello and insulin pump! The pump that keeps me alive sang with Sir Barclay, the cello that makes my life worth living. How awesome is that!

It totally made my day.

Real People Sick Again

I'm real people sick again. Third time this year. Achoo! *Sniff!* Achoo! MG is definitely acting up. It is common for illness to make MG worse. I'm keeping a close watch but doing OK. Diabetes is being, well, diabetes. Blood sugars are making no sense at all.

All in all, I am doing OK and for that I am grateful.

Water Water Everywhere

There are still several feet of water in our yard.

The flood turned our backyard into a duck habitat. Glad to know at least someone is enjoying the aftermath of the Chicago Flood of 2013.

Flooding in Chicago

It rained over 5 inches last night. Our backyard used to look like this.

Now it looks like this.

That stone slab marks the spot where our neighbors buried their dalmatian Veronica's ashes. The slab is knee high.

A local foot bridge over the DuPage river is now an aqueduct. Every river in our area is flooding. It's a mess everywhere. A few blocks from here cars are still floating. Right now I feel very lucky that aside from our roof leaking in a few places, we made it through just fine.

16 Years With Myasthenia Gravis

Today marks my 16th anniversary with MG. I wrote about how MG arrived here, so I won't repeat it. I'm amazed to still be alive. I am delighted to still be here. Life is valuable and worth fighting for. Sixteen years with MG. Fifteen years post thymoma. Nine years and 348 chemotherapy treatments. Almost two years with diabetes. Almost one year with XPU my insulin pump. And I am still alive. The part of me that has fought with fierce determination says, "I've made it 16 years. Here's to 16 more."

Then there is the other side of me. The part of me that stays in bed all day Tuesday. The chemo made me throw up last week. Usually my anti-nausea meds keep that from happening, but not this time. Throwing up from chemotherapy isn't like being drunk. It's more like being drunk, while having a stomach virus, in rough seas on the SS Chemo. After I got back in bed, tears ran down my face. I said, "I can't do this anymore."

My fighting spirit says, "Yes I can! I can do this. I've done this for 16 years. Of course I can make it 16 more." But, there is a point where a fighting spirit meets stronger forces. Even a champion heavyweight boxer can't stay in the ring indefinitely. MG has beat the crap out of me for 16 years. I am becoming increasingly aware that I can't take chemo every week for the next 16 years. Another 832 more chemo days is more than I can imagine. It's more than anyone should expect me to do.

And yet...

Medical science keeps advancing. I look at XPU and my Dexcom and imagine a day when my pump and my CGM talk to one another. One day the artificial pancreas will stop being an experiment. New and improved insulins will be discovered. I believe there is hope for my diabetes. Because MG is rare I have less hope, but maybe someone will figure out a new treatment for MG. Something less toxic, less painful, and less overwhelming than what I am doing now. Will it happen? I don't know. I do know if I give up now I'll never find out.

So on this anniversary instead of promising myself I can face down 16 more years with MG and diabetes, I am promising I can deal with it for now. I did not survive the past 16 years to give up now. I have music to compose and performances to plan. I have a book to finish. I have things I want to do. I have love to give and receive. I have fragile health and a strong will to thrive nonetheless. Sixteen years ago I could not have imagined what my life is like today. Perhaps sixteen years from now I will look back on today and be so damn glad I didn't give up. Right now I am glad I didn't give up back in 1997.

Chemo days have been rough lately. If you could keep me in your thoughts on Tuesdays I would appreciate it. I can't deal with this alone. Thanks to you I don't have to, and that matters.

But, I'm not low!

A few days ago I had the strangest reaction to a low blood sugar I've ever had. I have to admit, it scared me.

Normally when my blood sugar goes low I treat and move on, but not this time. Dexcom alarmed 60. I tested and sure enough I was in the low 60's. Instead of treating, a switch flipped in my brain. I knew my Dexcom was lying. My meter was lying. The entire thing was a conspiracy. I was not low. I didn't have to treat.

Dexcom alarmed 55. 52. 44. 42. 40. Low.

I watched the numbers going down, but didn't do anything about it. I decided my blood sugar would fix itself if I just waited long enough. Why should I treat when I wasn't low? My Dexcom and meter were wrong. I was fine. All I wanted to do was iMessage with my friends. Leave me in peace Dexcom. I'm not low. I'm fine.

I tried replying to iMessages from my friends Jeff and Matt, but I couldn't think straight. I was seized with the uncontrollable urge to rhyme, chime, mime, pine, shine. Every sentence I wrote, quote, float, boat ended up looking crazy, daisy, hazy.

Both of my friends, who also have diabetes, suggested EATING SOMETHING.

But, I wasn't low, bow, stow, throw. I was just fine, nine, twine. I tried explaining that I wasn't low to them, gem, stem. Only nothing I typed made any sense, pence, fence, tense. What is happening to me, pea, flea? Why can't I stop rhyming, timing, priming? Is it because my blood glucose is low, tow, mow?

Finally, I treated the low and my blood sugar came up quickly. Once my blood sugar got above 60 the urge to rhyme disappeared. Denying I was low, and then not being able to stop rhyming, really scared me. There is actually a name for the uncontrollable urge to rhyme: clanging. I'm a wordsmith, so maybe that's why my glucose starved brain started tossing out rhymes.

Hypoglycemia took me to a new level of hell. I never want to visit there again. That was the scariest hypo I ever had. Even worse than this one:

At least I had already started treating before that <20 reading showed up on my meter. I drank a whole can of Coke before testing. That <20 scared me, but this last low was a thousand times worse. I have never been so out of it that treating never occurred to me. Thanks Jeff and Matt for helping me out of that low blood sugar hell hole.

I have an appointment with my endo next week. I'll let them know what happened. Maybe they will have suggestions on how I can intervene before my brain goes offline. Until then I'm reminding myself I can argue with my meter and Dexcom all I want, after I treat my low. If I get angry and tell myself, "I'm not low." That's a sure sign I am low and I need to do something about it. Now!

252 At 2:52

It's 2:52 in the morning. My blood sugar is also 252. Nice of them to synchronize like that. I've given myself a rage bolus and now I'm up waiting to see if it will work. I'll be really upset in an hour if my blood sugar is 352 at 3:52. I already spent the past few hours close to 400 and it wasn't a lot of fun. Sucks when 252 is an improvement. Sucks even more lying awake in the middle of the night wondering...

Did I give myself enough insulin? Too much? The perfect amount? If I have a blood sugar of 252 at 2:52 in the morning, with a correction factor of x how many units of insulin does it take to bring my blood sugar down? That is not a math problem I can handle right now. At 3 in the morning my math skills look like this:




Sleep noun \slēp\

1. Something people without diabetes enjoy at 2:52 am.

How To Adapt a Cello Bow For Disabled Cellists

A little while ago I posted Adaptability Trumps Disability about how I adapted my bow to make it easier to hold. I have weak muscles in my hand and I kept dropping my bow, until I figured out how to adapt. This morning I received an email from a cellist who has a disability. She wanted to know how to adapt her bow, so here goes…

What you need before you start:

2 orthodontic pacifiers
Scissors
Instrument polish, or furniture polish
Cotton swabs
A clean rag.

1. Purchase 2 orthodontic pacifiers. The orthodontic shape is what makes this adaptation work. For a cello bow I use the 6 months and older size. Make sure you use cash. If you use a credit card you will receive an assortment of coupons for your new baby and several parenting magazines. Ah, the joys of modern living and data mining.

2. Take the screw out of the end of your bow. It comes all the way out.

Remove the frog from the slot. Be careful not to touch the horsehair or get it tangled. Set your disassembled bow aside.

Cut the silicone part off the pacifiers. Trim any rough edges.

Cut a small hole in the top part of each pacifier. You want that bump for your thumb rest, so don't cut through it. Pinch the top of the pacifier and make a small snip. This can be tricky. Here is where you want to cut.

Test to see if your hole is large enough to put your bow through. Adjust the size until it fits.

Line up your pacifiers together like this. Cut sides together.

 

Starting with the left pacifier part... Dip your cotton swab in polish. Polish the inside of the silicone piece.

Polish the bow stick. Do not get polish anywhere near your bow hair.

Thread the bow through the hole you cut into the top of the pacifier, then through the larger hole in the bottom. 

Slide the silicone piece on your bow all the way up to the winding.

Repeat with the other pacifier part.

Wipe your bow clean.

Reassemble your bow by putting the frog in the slot and putting the screw back in place. Tighten your bow.

Slide both parts of your bow holder down toward your frog. Carefully wipe away any remaining polish.

Hold your bow. Adjust the fit.

Go practice because practicing makes you happy!

I hope this helps. If the silicone is too mushy, you may have to try a cheaper brand. Unlike a baby, we want a stiff pacifier, so you may have to experiment with different brands. You can slide your thumb adapter higher on the stick if it makes your hand more comfortable. Remember, adaptability trumps disability. Always. And remember to practice because cellos are the best. Here's proof:

Happy Turtles

Changing How I Think About Change

Over the weekend I watched, with growing envy, people riding bicycles. I live a block away from The Illinois Prairie Path. Bikes zip past my house on the way to the trail. It's slowly sinking in that MG isn't going to relent and let me ride my old bike anymore. It's a change I don't want to make, but I have to make it.

How I make that change matters. I can make that change in ways that destroy my inner peace. I can cling to my bike and refuse to let it go. I can steep myself in bitterness, dwelling on how I feel cheated. I can throw tantrums. I can lay guilt trips on my husband and daughter because they can still ride their bikes.

Or...

Or I can grieve this loss. I can acknowledge how much it hurts to be left out. I can pass through those sad feelings and not cling to them. I have to adjust to this change. I can do it in ways that enhance my life or in ways that tear it down.

I'm choosing to build myself back up. Grieve the loss and let it go. Meanwhile I'll save my money and maybe next year I'll get myself a power assisted bike. Like this one: http://www.nycewheels.com/currie-izip-path-electric-bike.html

Adaptability trumps disability. It has been my creed for 15 years and it is still true. Adding an electric assist would allow me to ride without fear of wearing my muscles out and getting stranded a mile from home. When I get too tired to pedal, I can coast. An adapted bike for an adaptable person who is changing how she thinks about change.