40 Days of Thankfulness: Days Thirty-one through Thirty-five

Day 31, November 14: Dr. Roberto Salvatori and Johns Hopkins. I found Dr Salvatori to be wonderfully kind, interested and knowledgeable. He listened thoughtfully to my complaints and never suggested that I was simply "fat and depressed". In the first visit, I learned things about my diagnosis that my previous endo had completely skipped. I feel confident that he will take care of any future endocrine issues. It didn't hurt that he was showing my website and bio around to other staff when I went for an appointment!

Day 32, November 15: Facebook. What can I say? FB has brought me closer to people I might not have otherwise known.

Day 33, November 16: Bells. I love playing handbells. Nearly any bells but I really like the lower octave, the G3-B3 area.I'm not so good with 4-in-hand or shelley ringing. For more info about handbell techniques, there's a good article here.

Day 34, November 17: Computers. When the first computer came into this house I wasn't a happy camper. It cost far too much and I couldn't see any value in it at all. There was a tiny grey/yellow monitor, no hard drive. What good can come of this?

Things changed a bit over the years!

Day 35, November 18: Today is the first annversary of my one and only zipline experience. I’ve been thinking about since my kidney cancer surgery 3 years earlier. Since then, I figure I have “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining.

What I wrote then:

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

Today's Schedule!

From http://www.belizecruiseexcursions.com/BelizeCaveTubingZipLineExcursion.htm

Belize Enjoy two of the most exciting tours offered in Belize today, cave tubing and the canopy zip line excursions on your one day visit to Belize!

Your Zip Line adventure begins from the First Platform where you will "jump" from the first Platform to zip to the next Platform found 150ft away. Flying through the air surrounded by nature is the most exhilarating feeling ever encountered, the birds and Howler Monkeys found onsite will be at eye level making you one with the prolific nature Belize is famous for.

The Zip Line Adventure consists of 8 Zip Line Platforms each strategically located within the Rainforest canopy. Double cables (each capable of withstanding 2,000 pounds of weight, the requirement for this tour truly has nothing to do with weight but with the size of the safety equipment) are used for the ultimate safety. All landing Platforms are equipped with safety gear, handrails and Guides to meet your next landing as well as to ensure your personal safety throughout the tour. The Platforms are as high as 85ft into the Canopy and as far apart as 250ft!

On the second part of your exciting excursion you will then reach the Cave Branch System Welcome Area where you will be fitted with your life vest, (if you would like one) cave lamp and your tube.

The walk to the beginning of the first Cave Entrance is an easy gentle 30 to 40 minute stroll through the beautiful Belizean Rainforest. Your guide will take you through two dry caves where many stalagmites and stalactites can be admired along the way. Once we have reached our access point for your Cave Tubing adventure, you will be able to enter the crystal clear, refreshing river and enter the first cave. A picture of the first cave can be seen on our website but unfortunately the picture does not do the area justice as the cave entrance and color of the water is simply spectacular!

You will visit 1 full underground cave system (2 caves) within the Cave Branch System, you will also be guided to underground dry caves within the cave system, a treat only offered by our outfit, X-Stream Cave Tubing! As you approach the end of your cave tubing experience you will float through small fun rapids where you will pickup some speed and end the cave tubing ride in style, bringing you right back to the starting point of your Cave Tubing adventure. Tropical Fruits are offered following your excursion.

If a picture is worth a thousand words the following pictures should give you a great description of both tours.

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Trekking in the Belizean Rain Forest, an easy 30 minute walk with your tube cave tubing entrance

Walking through a cave on the way to the river for the cave tubing

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In the Rain Forest, an easy 30 minute walk with your tube to the river tubing entrance

Off we go on our Xtreme Cave Tubing Adventure

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Regular Cave-Tubing entry and our guides assist you if you need help

Floating through the Belizean underworld

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Exploring the cave system and various formations by the glow of the cave lights (head lights?)

The famous cave wave

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The short walk through the rainforest to reach the first platform.

The Guides instruct the Zip method and explain the cables, platforms and itinerary. You can see the double cables.

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Getting ready for the first jump to the first platform 85ft in the air!

Zip lining away!!!!

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One of the many platforms found high in the canopy

Wayyy up!

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At the end of the Zip Line Excursion you will repel from the last platform back down to Earth.

Easy does it. This is the experience of a lifetime!

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

Posted via email from Cushings Help

Abide With Me: Hymn # 1

I'm sure that many would think that this is a semi-odd choice for all-time favorite hymn.

My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.

Some Sunday evenings, he would preach on a circuit and I'd go with him to some of these tiny churches.  The people there, mostly older folks, liked the old hymns best - Fanny Crosby and so on.

So, some of my "favorite hymns" are going to be those that I sang when I was out with my Dad.  Fond memories from long ago.

In 1986 I was finally diagnosed with Cushing's after struggling with doctors and trying to get them to test for about 5 years.  I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.

I was terrified and sure that I wouldn't survive the surgery.

Somehow, I found a 3-tape set of Readers Digest Hymns and songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.

At NIH I set up a daily "routine" of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.

When I had my kidney cancer surgery, the tapes were long broken, but I had replaced all the songs - this time on my iPod.

Abide With Me was on this tape set and it remains a favorite to this day.  Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700.  When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them.  I sign page 700.

I think that many people would probably think that this hymn is depressing.  Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.

This hymn is often associated with funeral services and has given hope and comfort to so many over the years - me included.

If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.

~John 15:7

Abide With Me

Words: Henry F. Lyte, 1847.

Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:

    This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.

Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:

    O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.

For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.

 

Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.

Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.

Not a brief glance I beg, a passing word;
But as Thou dwell’st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.

Come not in terrors, as the King of kings,
But kind and good, with healing in Thy wings,
Tears for all woes, a heart for every plea—
Come, Friend of sinners, and thus bide with me.

Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.

I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

Finally!

I'm finally, at this moment, caught up on the bios.  I'm sure that there is someone writing another one right now, though LOL

Where did all these Cushies and potential Cushies come from?  This is supposed to be a rare disease.

It's good that the word is getting out, though.  Thankfully, people don't have to suffer with this alone anymore.

Between the jobs that have to be done on this site - and there are lots of invisible ones that members never see! , temporarily watching a friend's message boards, my "real" job, trying to have a life... I am more exhausted than I can remember being for a long time.

Housework is a thing of the far-distant past.

A few weeks ago I went to a handbell festival.  I took a bit of adrafinil on the main day to try to stay awake for the whole day.  It didn't seem to keep me as on as it did before.  I can't be used to it already.  Maybe I'm just that much more tired than I was just a few months ago.

I guess I'm a bit introspective today, too.  It's the first anniversary of Natalie's death.  Last month was the anniversary of Sue's death.

It's just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and curing Cushing's.

Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing's or related to Cushing's symptoms?

I know far too many people, good people, who suffered for many years from this disease that doctors said they didn't have.  Then they died.  It's time this stopped!

Speaking of death - what a cheery blog post this is turning out to be.  NOT!

I had been following the blog posts of a young woman who had "my" cancer".  She recently died.  I never knew her but she sounded like such a wonderful person who truly lived while she had the chance.

I wish I could be more like that and have a real life while I'm still here.  My life seems to be reduced to doing for others. 

 

When is it my turn?

What a day!

From another of my blogs

Yesterday: Nothing to fear...

...but fear itself.

My husband is having surgery in less than 12 hours.  He seems unconcerned.  I'm terrified.  I can't talk to him about it because he'd say it was ok, he's going to live forever.  Yadda Yadda.

But I can't help myself.  All these scary scenarios keep running through my mind and it disturbs me.  I haven't been afraid of my own surgeries.  Why does his scare me?  Was he maybe afraid when I had mine but we didn't talk about it?

12 hours from now I hope to be posting that all is well, he's better than ever, going to get out of the hospital sooner than planned.

I'm saying my prayers and have people praying for him and for me.  Maybe it's always harder on the person who isn't the patient, the one who waits for the good news while trying to stay calm.

So now I try to sleep, so I can be calm tomorrow, ready for whatever news the surgeon brings.

 

Today: What a day!

Yesterday was so long, tiring, hunger-inducing, maddening, yet a blessing!

We got up early to be at the hospital by 7:30 am.  We were a "tad" late, of course, so I dropped DH off at the front door to fend for himself with the paperwork.  I found a parking place right where I always parked when he had his initial incident.  WooHoo. 

This parking lot is very terrible.  They're tearing it up to put in another medical building and a parking garage.  The garage will help eventually but now it makes parking a nightmare.  Some of the staff has to park at my church and be shuttled over.

So, we got to the waiting room, tastefully decorated with monitors showing a tropical fish tank and a gas fireplace.  Very soothing.  Not!

But it wasn't too long before he was called back.  The nurse, Doris, was very nice and we actually had a few laughs and it was kind of pleasant - for me, anyway.

There was a moment of fear when the vampire was putting in the IV.  She wanted to do the right side because his surgery was going to be on the left.  He wanted the right side.  They had quite a discussion about that and I was afraid that DH might change his mind and we'd just go home.  He won, though, with the caution that they might have to change it when he got into surgery.

The pastor from my church came in and we had a nice discussion that ranged from diabetes and the inability to give himself the shots to the Roman Catholic Church to the combat engineers.

The anesthesiologists came in had DH practice with the squeaky toy he'd need to use during surgery to show that they hadn't cut any vital nerves or anything really important.  I don't know where they found it but it was a dog toy that looked like a head with brains spilling out over the top.  EEEWWWWWWWWWW

The surgeon came in just at 9 and reminded us of all the possible things that could go wrong.  All my worst fears.  My minister prayed, I gave DH (not the minister!) a kiss and he was gone.

M and I went back to the waiting room.  He sat with me a while and asked me if I'd eaten and I said no but it was ok.  I didn't usually eat until 2-3 or so.  After a while he left and i went to the bathroom.  While I was in there, my friend showed up and was asking the desk folks where I was and they didn't know (of course).  So, she turned around and there I was.  Amazing.

We went to the cafeteria - good thing! but they only had donuts, bagels, coffee, a little fruit since it was so early.  It was getting close to 11 and the surgeon said it would take about 2 hours so, after glancing quickly at the craft fair in the lobby, we went back to the waiting room.  As promised, the surgeon came out about 11:20 and said that everything went well.  DH did have to have a drain but that was ok.  That the plaque was hemorrhagic. They got all the gunk cleared out and everything was looking fine.  Great!

I called everyone I'd said I'd call to give the good news of a successful surgery.  Yea!

So, my friend and I chatted for awhile, waiting to go see DH.  And chatted.  And waited.  And chatted...

I went to the desk to see why I wasn't going back.  They said he probably didn't have a room yet.

We chatted and waited some more.  2PM Doris came out to talk to another patient.  She said she'd see what was up with DH.  Never saw her again.

More chatting, waiting.  Asked another staff person who said maybe DH was too dizzy (?), he was still in Recovery One. Whatever.

Friend had to leave.  It was about 3. 

About 3:30 I called and left a message that I might not make bell rehearsal that night.  I was tired, hungry, hadn't even seen DH yet, was sure the dog was really messing up the house.

Surgeon came out from another surgery wand asked why I was still there.  I told him and he said that 4 hours in recovery was standard for this surgery.  I said that no one had told me that.  I could have eaten, gone home to walk the dog, not been worrying about what was happening in the back.  That PO'd me just a bit.

There were only 3 of us left in the waiting room and it was getting dark.  Finally, about 5, they told me he was in a room.  I gathered my stuff up and found him on the 5th floor.

He looked good except for the bandage on his neck and the drain. We talked for a while and he wanted a book so I said I'd go home and get it and take the dog out etc.

Amazingly, the dog hadn't done anything in the house at all.  She's only 6 months old and I was amazed at her self-control.  I took her out, gave her a little dinner while I tracked down the book. I had a handful of honey almonds (most nut-ritious!) and a bit of stale coffee.

Back to the kitchen for her, back to the hospital for me.  This time it was very hard finding a parking place - and my gas was getting very low.

DH was in his room chomping down dinner. We went for a little walk around the perimeter of the floor and that was kind of tiring.  Talked for a bit.  He's going to slow down and work less.  We're going to travel more.  I've heard all this before so I nodded and said uh huh when appropriate.  We'll see.

About 8 or he was fading so I left.  I could have turned left out of the hospital and gone to the end of rehearsal but i didn't.  I went right and to the grocery store where I got 2 small bags of chips and a sub - and some real stuff.

I took the puppy out again, gave her dinner, called my best friend.  We talked for about an hour, me sipping some wine.  I had my 2 bags of chips, my sub, finished my wine and zonked out, exhausted.

He's coming home today.  The drains, IVs and all are out now, I think.  I have to go back in about half an hour to get him or to wait for the discharge papers.

Then, I'll bring him home, get settled, and head off to my temporary job. After about 7 tonight I can sleep.  Yea!

Then, tomorrow I pick up my Mom to take her to the dentist and the next round begins...

Decisions, decisions

Although this was not completely unexpected, I have been asked to be the interim assistant music director of my church. Prior to being asked, I had always thought that I would turn this position down immediately but now I find myself thinking about it. I have said that I would call in my decision on Monday so my weekend is cut out for me.

When I did the music camp that wiped me out, that was 15 hours a week plus a couple after-camp meetings. Could I do that every week plus an additional 5 hours sometime during the week?

I already put in quite a few hours during the school year. I currently usually play bells on Sundays (2) and I often sub in a youth group (1), have 2 bell rehearsals on Tuesday (2), have a rehearsal on Wednesday (1), children's handbells and play piano for another group on Thursdays (1.5). That's 7.5 hours already and more than enough to add to the time that music camp was.

Could I, with my nap schedule, pull all that off?

This is a temporary position. When a new music director is hired, the current acting music director will resume her "real" job, which is the one I would be doing. Hopefully, a new permanent director will be hired soon.

My ideal thing would be to say yes, get the prestige, such as it is, of having this job, then they hire someone who starts the beginning of September so I never have to actually do the work.

As a volunteer, I can always say no to coming in for an extra rehearsal. As an "official person", I think I would have less leeway to do that.

I have worked with the acting music director for many years and we work well together.

Other than the schedule above, I can set my own hours.

This job involves emails, computer scheduling, other computer stuff, all of which I can do easily. If there's any recruitment, I don't think I could do that.

The acting music director says that she will help me with repertoire since she is very aware what they have in the library and I don't. I would hate to choose music only to find that that choir had just played the piece in the spring.

I need help deciding - what should I do?

survive the journey: Cushing's Help is on the (BlogTalk)Radio Network: Got yer ears on?

survive the journey: Cushing's Help is on the (BlogTalk)Radio Network: Got yer ears on?

Thanks, Robin for that great post on your blog!

My comments were:

Yes, of course I'm out here!

I don't remember exactly how these came to be regularly on Thursdays but I think it was because of the long-time regular text chats on Wednesday nights and that I always had handbell rehearsals on Tuesdays.

I remember also that it was nearly a full year before these interviews started that we were talking about how to start a podcast of some kind but not quite sure of how to do that.

I must have been talking podcasting because the Christmas of 2006 my son got me a book on podcasting as a gift. I remember reading it and thinking it was way too complicated. LOL

You made that short podcast on "Diurnal variation in diagnosing Cushing's" in December last year then the first of the year we had our first test podcast where you interviewed me and then we were off...

I remember being terrified at first, and being so well prepared with the person's bio all printed out and advance questions to ask.

Now, when I'm hosting, I pretty much just wing it.

I do think that this is a great way to help spread the word. Last time I looked at the stats, we had over 6,765 on BlogTalk alone. That's nearly a thousand listeners a month. I have no idea how many people listen through the main site or on iTunes.

Personally, I have all these interviews on my iPod so I can listen/re-listen anytime or, if I go to a Cushing's meeting, I can play them for people who may not have a computer.

I think that they're always interesting and I know I learn something new every week. And, amazingly, there's been no dead time where no one could think of anything to say.

One thing I like about these interviews is that listeners can call in with their own questions or comments or, if they wish, they can sit in the chatroom and post what they'd like to say in there and it can be introduced into the conversation.

BTW, I love that broadcasting logo. Can I borrow that sometime? I don't like the one I've been using which is just the ribbon with Cushing's Help Podcast across the top of the ribbon.

Thanks for all your help with these podcasts, Robin. I don't think that they would have gone as far as they have without you hosting/co-hosting and your support. Surprisingly, there is more behind the scenes work that goes on promoting upcoming chats and getting finished ones on iTunes but I think it's all so worthwhile.

So...thanks for all your input, help, knowledge, willingness to talk and just being there. You're a great "Cushie Crusader"!

Vision(ary?)

Yesterday, I went to a friend's to play piano duets. I put in my contact lens. I only wear one most days. When I ring handbells, I wear a special "bell lens" in my left eye so I can read music across the bell table.

Anyway, when I left for my friend's house, my vision was a little blurry but I figured it would clear up during the drive. I even went in the house to take out just to be sure it was in.

Luckily, I know the way really well so I didn't need to read any signs or anything. I mentioned my blurry eye to my friend and said it was lucky I had an appointment with my ophthalmologist Thursday. She said she had one the same day but her's is 8:30 and mine is 9:30 so I guess she'll be doing the eyedrop thing when I first get there. Very strange that we should set up such similar times.

An aside about my ophthalmologist...I've been going to him for nearly 28 years. My husband first found him when I was playing the organ at this little church. I had been there practicing on a Saturday and the minister's cat came in and walked across the top of the organ. I am very allergic. When Sunday rolled around my eyes were glued shut. I had to call around for a substitute organist and my husband called around for an eye doctor. On Sunday morning, there weren't any and our local hospital hadn't been built yet so there was no close-by ER to go to. This doctor, who had never seen me before, agreed to open up his office and see me immediately.

I have been indebted to him ever since and I've told all my friends about this kind doctor. When I was first scheduled for NIH testing pre-op, I told them that I couldn't come for that start date because I had an appointment with this doctor and I didn't want to break it.

[aside over]

Anyway, I got home and checked the case - I had the correct eye cover off and the right eye lens in.

So, I took the lens out, cleaned it very carefully and soaked it over night. Today, the eye was blurry again. On a hunch, I tried the lens in the left side of the case and it worked.

Guess I must have been so tired when I took out my left lens on Sunday after ringing bells that I put it in the right side of the case without thinking.

Today I have a massive headache, probably from squinting all yesterday.

At least I'm not going blind, just yet!

2:30 - The Dental Time

Ok, my teeth weren't hurting but it was time to go back.

I have put off going to the dentist for a couple years and I have a couple things that really need to be taken care of and I'm terrified.

When I was a child, the dentist tried a new thing on me - drilling cavities with only a headset to keep out the noise. I wasn't supposed to feel any pain that way. I was feeling pain and kept turning up the sound to try to help. The dentist could also hear my music and he didn't like it so loud so he would turn it down and I would turn it up.

Finally, I bit him.

He sent me out of his office and told my parents never to bring me back. Instead of supporting me, my parents were mortified, I was punished and I never went back to any dentist until I was in High School.

Since then, I've done ok, but I have a really small mouth and a very big gag reflex.

In spring, 2006, I was eating GrapeNuts, the hard kind, and cracked my bottom tooth. That left ragged edges and scratched the underside of my tongue and cheek during the night. Felt like my tongue was swollen on the underside.

Naturally, this was the one weekend that my dentist was out of town. I saw some substitute dentist on Monday morning.

Swallowing hurt, and I think I was talking funny (Julia would say funniER, especially if the dentist was from New York!)

Actually, my tooth didn't hurt at all, but it was the jagged edge that was cutting under my tongue, making it hard to talk, swallow and eat.

Probably this incident set off several others, too.

Monday morning I was nervous about this upcoming dental stuff, worried about Sue (who had lung cancer at the time) and other things. I woke up on Monday with a mild sciatica attack and a stomach ache from living on soft pudding and such.

When I got to the dentist's office, his whole front parking area was torn up, construction vehicles everywhere. There was a big sign, a floppy one, blowing in the wind, that was hard to read but I could see something about parking in the back so I turned the corner looking for a back way in.

Naturally, the office complex said NO Parking for Dr J's office. So I kept going. Ended up back where I started from and called the dentist. Turns out I was supposed to weave through the construction equipment and workers. In the back was very little parking so I squeezed my car into a place where I was sure it would be hit by someone else backing out. Fortunately, that didn't happen.

The doctor shaved down the tooth some so the scraping wouldn't continue and put down some kind of plastic sedative film over the whole thing until the real work could start. They couldn't do a whole x-ray because of the pain under my tongue. So they're not sure if I need a root canal or not - I would bet any money that I do, since that's more $$$ for the dentist. They wanted to put in an implant for $3,500 but insurance doesn't cover any of that. The root canal sounds like a bargain. That was to be a 2-hour appointment in March, 2006.

So I left there, still not able to talk much because of my tongue, and went to my mother's to try to convince her to cancel my piano students for the afternoon. By then I couldn't talk and I was limping from the sciatica which was getting worse.

A friend of mine gives me her old Wall Street Journals to give to my mom. I thought that taking those up to her would be a good bribe so she'd call my students. She hates making calls almost as much as I do.

Taking the papers out of the car, I somehow managed to hit my eye with the corner of the stack of newspapers. Now my eye wass in pain, tearing and it was hard to see.

So, I limped up 3 flights of stairs, half-blind, sore mouth, mild stomach ache. I promised my mom that it would be mostly answering machines - no worries about talking to actual people. Of course, you know that only one turned out to be a machine!

Went home, took a much-needed nap.

Tuesday, I woke up in excruciating pain from the sciatica. It was the worst I had ever had this. I called my doctor's office and luckily he was able to see me. He thought that all the stress that's going on right now contributed, as well as sitting in that dentist chair all tense.

Finally, I had 2 new meds to make everything a little better, but they knocked me out and made me dizzy.

But things were getting better. My eye stopped watering and I ccould see again. I wasn't getting any more cuts under my tongue. And I could take my meds and go back to sleep.

I made the followup dental appointment and planned to go but then Sue died. I had thought that I would be going to her funeral and so on, so I canceled that appointment.

Then, the tooth seemed fine, so I put it off.

Then, in late April 2006, I found out I had cancer myself with surgery in early May. One of my diagnostic tests was a bone scan to be sure that there was no cancer in my bones. The next evening, I was playing handbells during a rehearsal and a crown just fell off. I figure the radioactive stuff or something made the bond weaker.

Sometime in June or July a crown on the other side came off. Eewww.

I figured the cancer was bad enough so I was taking the year off from my dental woes. I wasn't even sure I was going to survive the year!

So, here we are in July 2008. The receptionist had called to schedule my husband (who wasn't home, of course!) so I bit the bullet - no pun intended - and said that I was about 2 years overdue. I told her about the gag reflex and that I needed to have sedation.

So, the check-up, cleaning, X-Rays, estimate and all took place this afternoon. There were no problems that I didn't already know about - the missing crowns and such. Estimated cost, over $8,000. Part will be done this year (maybe! maybe I can draw this out another couple years...) and part next to take advantage of insurance.

Thank goodness there's no pain, and there weren't any new problems!

Music Camp is done!

I posted last week about my energy levels and music camp teaching. I came out of it better than I thought I would but I ended up having a headache from Friday until Sunday. And, I'm not supposed to take any meds without approval from my kidney surgeon. So, I toughed out the headache.

The first day was a nightmare - one of the 6th graders started crying during the first handbell rehearsal. I don't blame her, either. She was the only one in the group who had never rung before. Her class had also come directly from Orff class and I guess that some experience would have helped there, too.

The second day our church's assistant music director got sick with a high fever and didn't come in. Actually, she didn't make it for the whole rest of the week. So, there was a lot of shuffling around of classes and some students were moved from one class to another. Somehow, we got through the day. I had to take a bit of extra Cortef to make it until naptime.

By Wednesday I figured that I could have 2 groups ready to play something on Friday, both with a water theme. So, the second graders would play Lightly Row and the sixth (even the cryer!) would play The Water is Wide, both by that famous composer - Traditional.

Thursday I was finally getting the hang of all these different classes. There was virtually no time to set up between class which made it a little tough since every class had different pieces and some had chimes instead of bells, some doubled different parts, some had TAs filling in. But it worked out!

Friday was mostly spent on the dress rehearsal and show. My kids did great playing their pieces before the show. My mom even came to see!

I left Friday with such a headache. It started in the right side of the back of my neck, then worked its way up to the left side of my forehead by Sunday afternoon.

Sunday, the kids performed a couple songs from the musical at all 3 church services. My husband even came to the first service. Even rarer than my mom coming to the performance. Since the assistant director was still out sick, I stayed for all 3 services as a second director in case the kids looked my way.

All in all, a success!

Things must be getting better. When I first started music camp about 5 years ago I would sleep until about 11:30am, go to camp, get home about 4:30 and sleep and sleep. I think I was on growth hormone by then, too.

I was definitely on cortef again at that point. I had been off for something like 15 years after my pituitary surgery, then the scar tissue caused the pituitary to not work so well so my endo had me go back on the cortisone. He wanted me to take a lot more but when I did, the Cushing's symptoms - including weight gain and that hump - started coming back.

So, I'm on the smallest possible dose. It's not enough to help me feel better but not enough to bring on Cushing's. When I'm "stressed" I'm supposed to up the dose. The growth hormone was supposed to help with my energy and weight issues but it did neither.

Then 2 years ago I had just had my kidney cancer surgery and I was still tired from that experience - and newly off the growth hormone. (Because of the cancer, I can't take growth hormone) I got through camp, just barely.

So, maybe next year, if I still get "volunteered" I'll be able to do this without any extra cortisone and no headaches.

Summer Music Camp

My church is doing music camp again this summer as it has for the last 4 or 5 years. And once again, I was "volunteered" to help out. Every year, for the whole week, I have come home exhausted, bone-tired.

This year is no different but I found out last week that I was in charge of the handbell classes. EEEK! There are 5 classes each day from second to sixth grade. Each group is a mix of kids, some have rung for a few years, some have never rung at all. Getting these kids organized and capable of playing something at the end of this week will take a miracle! Except for the sixth grade, at the end of the first day none of the other classes could ring any actual music other than left hand, right hand, left hand...

I don't know if I could have handled (no pun intended!) this pre-Cushing's when I was younger or not but the stress and the long afternoons are really sapping my energy levels to next-to nothing.