Progress and Stumbles / Dumplings

We had a really busy week last week.  I tried to schedule a few down days, to recoup my energy in between some events we had going on -- I'm learning to be aware of not over-scheduling things.

Wednesday we had an appointment at Duke with Dr. Raja.  This is a LONG trip for us -- it is 4 hours' drive from our home to Durham.  Our appointment was late afternoon, so we packed up for staying overnight IF we decided to do that.  We stopped for lunch at Cracker Barrel, and arrived at the clinic just a few minutes early.  I was happy to be able to walk into the place on my own steam this time!  My first visit, 3 months ago, I was wheelchair bound and on oxygen 24/7.

July, 2018

October, 2018

Dr. Raja was quite pleased with my progress; so were we!  I'm continuing on the same medicine regimen for the time being.  We will likely try reducing the prednisone again  in a few weeks.  She noted I had gained 5 pounds in three months.  Hey, I'm on prednisone, I thought I was lucky not to have gained 50!

We headed home --  the lure of our own bed was too great!  We made it back home around 10 pm.

Making some recognizable progress is a great feeling!  Boosts my confidence some -- which I have to tell you took a huge hit this summer.

I had a couple of "rest days" on Thursday and Friday -- which I needed, because Saturday and Sunday were jam-packed.  I puttered around a bit, did some "fun" things -- like sewing projects, and sorting through some papers and photos.  I try to plan things that I can do sitting in a chair or curled up on the sofa.

Saturday, we went to Charlotte for a Caleb Ministry meeting.  Over the past month, I made 14 Angel Gowns of various sizes to deliver.



Later the same day, we had a MakinG Connections gathering, which is an MG support group -- also in Charlotte.  This one was hosted by Alexion Pharmaceuticals, and they presented a really informative talk about the medication Soliris, that is used in treating some kinds of Myasthenia Gravis.  It does not do much for my particular "flavor" of MG, but I wanted to learn about it anyway.  We met some other folks, both patients and caretakers, who are traveling this strange MG path -- and really did make a few connections!

I was worn out when we got home.  I went to bed at 8 pm, I think I was asleep after about 3 breaths -- and I didn't wake up for 11 hours!

Sunday was equally as busy.  I was the Scripture Reader during worship at my church.  This was the first time I would be reading since the onset of MG.  In the past few days, the double vision and speech slurring have both returned.  I tried to "rest my mouth"  (HAHA) prior to the reading -- I didn't talk much, didn't sing.  I noticed a few slurs, but I'm more aware of it than others.  (I am my own worst critic.)  I think I read Psalm 34: 1-8 fairly well.

I'm an Elder in my church, and we had a Session meeting afterwards.  Again -- I had to speak, it was my turn to provide the opening devotional.  I knew I was tiring out, but I was DETERMINED to get through what I had to say.
And I did.  I stumbled over a couple of words but overall it was ok.

I'm trying so hard to find or be "NORMAL" again.  There is progress, but there are also some stumbles.

I took a short nap when I got home -- we had tickets to see HAMILTON in Charlotte that night, with our friends Deb and Jim!  I so wanted the evening to be "like normal" -- a "double date" for dinner and a play.  Deb and I had already plotted to "dress up" for the evening, and I had just the perfect dress.  I wore nice jewelry that David bought me on our honeymoon in Hawaii, my dress fit great, I was having a good hair day.  I put on makeup, hose, and slight heels (I don't wear high ones anyway).  I really WAS feeling close to normal, overall.

But I knew the double vision was going to be a plague.  While I wanted to see Hamilton, I didn't want to see it twice at the same time!!
Feeling confident, I decided to take a leap of faith.  I'd wear an eye patch, in public.  I've purchased several -- and they are pretty.  Hey, if I've got to be a pirate, I'm going to SPARKLE at it!

We drove to Charlotte (again, 2nd time in 2 days!), picking up Deb and Jim on the way.  David parked in the parking garage downtown, and we began to walk to Basil Thai for dinner.  We had barely gotten a half-block when a lady stopped me to tell me she thought the eye patch I was wearing was FABULOUS!
That made me smile, and was a real confidence boost!   In the restaurant, again someone gave me a big compliment about it.  Those two kind strangers made up for the odd stares I got here and there throughout the evening.

Yes, at this point I'm feeling pretty good, pretty normal.

We walked back to the Blumenthal PAC for the show.  We'd bought those tickets over a year ago, and had been looking forward to seeing "Hamilton" for such a long time!  I've listened to the soundtrack, read Ron Chernow's biography, and watched a lot of Lin Manuel Miranda's work on YouTube.  This was going to be GREAT!

Now, besides being double, my vision just isn't always great.  Sometimes my depth perception is off; often even with glasses things are fairly blurry.  Sunday was "one of those days."  In a dimly lit place, such as a restaurant or theater, I can barely see at all.

As we made our way to our seats, David was ahead, looking for our row.  Deb and Jim were behind me.  Then -- all normalcy ended, for a while.

I missed a step down -- I flat out did not see it, even though I was looking down.  No depth perception.  I turned my right ankle, caught myself before I hit the floor (thank goodness!).  Two ushers were there immediately to help me.  I was OK.

Embarrassed -- I'd yelped in blind fright as my foot turned -- but it could have
been worse if I'd hit the floor and rolled! The theater manager stopped by and asked if I was ok, and did I want ice for my ankle.  I thanked him, told him I thought I was fine. (He checked on me again at intermission, and an usher walked with us back towards the parking deck after the show, just to be sure I was okay.)

At that moment, I was pretty much bummed, wigged out.  So much for a "normal" evening. I calmed myself down; had a sip of David's coffee.  Lots of internal positive self-talk.  Shook it off.  Pretended to read the program.  Breathe.

We were here to see HAMILTON!

The show did NOT disappoint!   The four of us had a BLAST, I left with a smile on my face.  I'd go see it again and again and again (if I won the lottery, haha)!  The entire production is amazing, from the singers and dancers, to the costumes and set.  The music and lyrics tell the story, interweaving melodies and rhythms in such a way that captivates the audience.
I learned a lot of history, both from the musical and from reading the book.
I highly recommend BOTH.  (I am telling you:  GO SEE IT!!)

The next morning, my ankle was tender, but no big deal, just bruised a bit.  But for all the earlier confidence boosts....inside I've felt like crying.  Nothing is the same.  Nothing can BE the same.  I may LOOK the same on the outside, but I'm NOT the same.  I often feel like I am trapped inside a chain-link cage, watching the rest of the world that I used to live in  I want to break out, I want to participate, to jump in and DO THINGS like I used to do.  But I'm locked inside this MG cage and I don't see any way to get out.

So along with progress, there are stumbles.   I learn what I can do; I learn to make adjustments.  Some, I am not too crazy about having to make.  I'll likely take a cane when I go to theaters or the movies from now on.  I think it will be a good safety precaution.

Life goes on....

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Untethered Time Travel:  DUMPLINGS

It is 1975.  I am 19 years old.
I'm a new bride this winter, going to college in the NC mountains.  I'm also learning to cook some.  This is obviously NOT one of my greater talents.

It's cold outside, and I decide I'd like to make chicken and dumplings.  My new mother-in-law makes wonderful chicken and dumplings, so I call her to ask how to make them.  She tells me that all I have to do is boil a chicken until it's done, make some biscuit dough and roll it out really thin, cut it into strips, and cook the dumplings in the chicken broth.  

So that's what I tried to do.  
It was a complete and total disaster.  
The dumplings had pretty much clumped into a huge doughy mess.  
The chicken was pretty good, actually.  
But you had to work at finding it in that mess of gooey dough.
My new husband tried to scoop out some in a bowl.  After a taste or two, he got up and ceremoniously walked over to the garbage can and dumped it out.  Then he said to me, "Don't you EVER ruin a perfectly good chicken like that again."  Then he made himself a bologna sandwich for dinner.  

(Only we didn't have a dog!)

My feelings were hurt, for a long time.  
Eventually, I learned to make fun of myself, telling that story
 (along with other kitchen disasters that I created). 
This was a big stumble.  But.... life goes on.

It took about twenty years before I attempted to make chicken and dumplings again.  By then, I'd learned of a "secret weapon" called Anne's Frozen Dumplings that I could buy in the grocery store.  

This time, the meal was delicious.  My kids liked it; even their dad liked it -- and maybe that erased the memory of my first attempt for him, who knows?  

I STILL like it, though I'm not the cook around here now. 
But man, when David goes on a road trip.... way back in the freezer is a pretty red and yellow box, and I'll make myself a small pot of chicken and dumplings, with lots of pepper....  

To Anne of Anne's Frozen Dumplings, 
I don't know who you are, but THANK YOU, and I LOVE YOU!