Day 22: 40 Days of Thankfulness

 

Today is the 31st anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Day 21: 40 Days of Thankfulness

 

Today I’m so thankful for OakMarr and its swimming pool!

Most Mondays, Wednesdays and Fridays I go to water excercise classes there.  There is a different instructor each day which was weird at first but I like it now because they all teach different exercises.  One of my favorite instructors is actually a sub, but I love how she explains why we’re doing things.

Aqua passes are a better deal than signing up for a specific day/time and they have more classes that aren’t available to people who sign up for an assigned class, especially over holidays and school vacations.

For NoVa locals, aqua fit passes are on sale now until the end of the month – 10% off 20 visits, 15% off 30 visits.

Not our class…

Day 20: 40 Days of Thankfulness

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

Day 19: 40 Days of Thankfulness

 

Today I am thankful for my dog, Mimi. She’s a beautiful dog, sweet, loving and usually very mild-mannered, but she’ll bark her head off whenever she hears someone in the driveway.

 

Tonight, she barked at potential trick-or-treaters and we have lots of candy left over. :)

 

Thanks, Mimi!

 

Stay Safe Out There!

 

 

 

Scotland Invented Halloween :)

IT SOUNDS like a bold claim to make, but evidence suggests that, if not for Scotland, Halloween would not exist – at least not as the world knows it.In medieval times, the 31st of October was the last day of the old Celtic calendar.

 

Scots druids referred to it as Samhuinn, a term which loosely translates as ‘summer’s end’. For comparison, the Scottish Gaelic for November is An t-Samhain.It is believed that ‘Halloween’, a Scottish contraction of All Hallows’ Eve (All Saints Day) first entered common parlance in Scotland in 1745.

 

Source: How Scotland invented Halloween – The Scotsman

 

 

Day 18: 40 Days of Thankfulness

Adapted from https://cushieblog.com/2010/11/22/40-days-of-thankfulness-days-thirty-one-to-thirty-five/

 

Today is the anniversary of my one and only zipline experience.
I had been thinking about doing this since my kidney cancer surgery 3 years earlier.  I figured I had “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining.

All the following is I wrote then:

Day Four, November 18, 2009: Belize City, Honduras

Today’s Schedule!

Up and at ‘em early this morning.

This is finally the zipline day I’ve been thinking about since my kidney cancer surgery 3 years ago. Since then, I figure I have “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked this cruise.

Our tour left first so after breakfast, Michael and I got on the tender for Belize. Tom’s tender was about 45 minutes later. Even though the tender went zipping along, it was about 20 minutes to shore.

We got on our bus with about 30 other brave and not-so-brave folks and our guide, Eddie, told us a bit about Belize City, Belize in general and what to expect on our tour.

Belize City used to be the capital of British Honduras (as Belize was formerly named) but it’s 2 feet below sea level and prone to hurricanes so the capital was moved to the other city – Belmopan in 1970. It was almost entirely destroyed in 1961 when Hurricane Hattie swept ashore on October 31.

Because of the altitude, graves are all above ground.

The main languages are English (the official language), Spanish and Kriol. Eddie said the kids learned English in school but, as soon as they were out, it was back to the Kriol. They wear uniforms to school.

Bordering on Mexico, Guatemala and the Caribbean, Belize is the second smallest country in Central America (after El Salvador), with an area of approximately 9,000 square miles that includes numerous small islands off the coast known as cayes.

More than half of the mainland is covered with dense forests, and at its longest point Belize is 174 miles long while its greatest width is 68 miles. Long a strong advocate of environmental protection, the government has set aside approximately 20% of its land as nature reserves.

There are also several important Mayan sites situated on the mainland such as Altun Ha and Xunantunich that make for excellent day trips and are included on shore excursions by most cruise ships. As a matter of fact, Belize has the highest concentration of Mayan sites of all the countries in Central America.

Eddie tried to tell us that our tour would be scary – but FUN, it would be hard – but FUN. He himself had done the zipline only once, because he had to for this job. He said that the caves might have things brushing up against us but they would be leaves and twigs. The caves might have “log-gators” in them, too.

We travelled along the 37-mile drive along the Western Highway – the scenery changed from city to suburbs, to a settlement called Hattieville where hurricane survivors met to life after the country was destroyed, to the beginnings of the rain forest.

We turned down a road to a jaguar preserve – yes, they have them here! then, finally, to our destination, Caves Branch National Park.

Eddie handed out water (which we had to leave on the bus). A bathroom break, then off to the zipline area.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with braking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Here we are, after getting our gear off. The people behind Michael are just starting out on their zipline adventure. I thought maybe we could go again…?

Next stop was lunch in the trees. It was a buffet similar to those in Barbados – a jerk chicken (Eddie had said it would taste like chicken – might be egret, road kill, log-gator or even…chicken!), peas and rice, a pasta salad, cake, fruit salad, the usual fare.

Next up, cave tubing! This is the event I got my new waterproof camera for. Thanks again, Alice!

 

If you’re interested in reading the cave tubing part, it’s here: http://www.cushingsonline.com/cruise/cruise2009.htm

Day 17: 40 Days of Thankfulness

 

Our son Facetimed Sunday, just to chat.

I am thankful that he’s doing so well for himself, has a wonderful new wife, has a good job, good friends, is a fine musician and that he’s not afraid to say he loves his parents.

 

We love you, too!

 

Day 16: 40 Days of Thankfulness

 

Today I am thankful for my church choir.  Last year at this time, the “low voice choir” formerly the Men’s Choir sang this:

 

 

I’ve had a long history with singing from the time I was a kid singing in the choir at my Dad’s church in Springfield, Mass.

In High School we had a great choir and it was the time before “political correctness” would have banned us from singing such wonderful classical music like Brahms’ German Requiem.

In college, as a music major, there were choirs and when we finally got to our current home, I joined Sweet Adelines.

I was a member of Sweet Adelines for 10 years, singing bass, before Cushing’s robbed me of that particular pleasure. SA takes lot of energy between rehearsals, performances, competitions, traveling. I just loved it but I couldn’t keep up.

My old chorus, but years after I left:

 

 

For a few years, I belonged to a local woman’s group but even that got to be too much after a while. There wasn’t the traveling or the competitions but rehearsals and performances cut into that energy.

A few years ago, our church choir director opened up the opportunity to sing for just the Christmas Cantata. No long-term commitment and only half the rehearsal time for about 10 weeks.

I hadn’t sung anywhere outside my car for about 10 years but, with trepidation, I signed up. Because of my bell-ringing and work with children’s choirs, I knew most of the other choir members and that made it a LOT easier on shy-me.

Christmas came and singing with the choir and orchestra was just fantastic. There was the invitation to stay, to become a part of the choir for good but I had my Cushing’s Interviews on Thursday nights and I couldn’t see how I could work all this in.

Then, the choir sang How Lovely Is Thy Dwelling Place from Brahms’ German Requiem and I was hooked. How could I not join?

 

 

So, I moved the interviews to Wednesday nights and Thursdays are free for choir rehearsals.

 

Day 15: 40 Days of Thankfulness

 

Today I am thankful that the skunk already passed by when I took Mimi out for a walk a couple days ago!

It’s so not fair! I can’t smell lots of flowers or perfumes but I can smell a skunk blocks away.

 

 

 

 

 

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