The Day the Internet Crashed

Finally, the day had arrived.  Gary was going to get his surgery behind him.  On Friday morning, July 22, 2024, at 4:15 a.m., we met our driver, Joe Lapp, down in the main lobby of our building and we proceeded to Charlottesville (65 miles away).   Joe dropped us off at the University of Virginia Hospital at 5:30 a.m. and went back to Harrisonburg. 

(I can't drive because of the double vision I've been experiencing for the past few weeks. More on that later.)

We were met with a big surprise --- we discovered that the computers were down.  This wasn't just the hospital, it was a world-wide problem.

 

No one in the hospital could do anything.  The hospital computers couldn't even access their medical files!!!  Not only that, airports, banks, police, firemen, and businesses all over the world were hit by this problem  so they were all "dead in the water."  

 

It turns out that Microsoft had put out a security update and there was a mistake in the programing.  Things are slowly getting back on, but not all.

We sat in the waiting room and kept waiting for a couple of hours, thinking things would be back up and running soon.  We turned around to discover the whole, large waiting room was emptied out.  Guess those folks lived in Charlottesville so they went home.

The receptionist felt so bad that she gave us each a gift card for Walmart of $5.  Plus, she kept apologizing.  She was so sweet.

We had hired Joe to drive us over, Gary would have had his surgery Friday,  and Joe would come for us on Saturday.

 

So...... Gary did not get his surgery behind him after all. He'll have to continue to get up 4 or 5 times a night until then..

 

We'll have to go back when the computer glitches are fixed.   He tried calling the office all weekend - just got a recording.  Today he reached them.  

 

They are trying their best to adjust schedules in order to work all the surgeries scheduled for Friday in as soon as possible.  He could choose to just make an appointment but there is no  opening till next year!  So, he'll be patient, as much as possible, and will wait to hear from them and hopefully, they'll work us in ASAP.

This whole episode makes me think how a terrorist could take over the whole world!!!  Perish the thought!!!

I Got Shot!!

I got the first Covid-19 vaccine shot last Saturday and what an accomplishment that was! 

A neighbor gave me a number to call to register.  I was on the phone a long time as I was transferred to different numbers, and given numbers to try.  

They also sent me to some websites.  http://stlucie.floridahealth.gov/   
The health department number is - 772-462-3800 - the neighbor said let it ring and ring and ring.  Someone will (might) answer.

My determination grew along with my frustration.  I had registered online more than a week ago but one operator said people registered multiple times and it crashed the website so, all the people who thought they were registered on a waiting line - ARE NOT!!!

One operator said that there was a vaccine clinic planned for January 19-20 at the Civic Center, which is very close for us.  I had friends who tried to register for that one but got the message that there were no appointments available.  

Well, another option appeared.   I learned that they had a walk-in (not a drive-thru) for Saturday 9:00 - 4:00, which means no appointments.  This was at a health center on Midway Road in Ft. Pierce.  I figured we could try our luck on Saturday and if we didn't get in, we'd try for January 19 or 20.

Jane Raymond and I left at the o-O-dark-thirty time of 7:00 a.m., which we thought was plenty early since it didn't open till 9:00.      Ha!

  Some people went at 5 a.m. and you can see their coffee, blankets, etc.

The line was all along the side and across the back of the building and was getting longer all the time.   It ended up spilling out onto the sidewalk beside the building and kept growing by the minute.

Mind you, the photo above shows only one leg (1/3) of the line at 7:20!

Thank goodness I had a chair in my car so Jane and I took turns sitting.  Also, the weather was slightly cloudy and about 65-70 degrees.

We were getting pretty exhausted by about noon but decided that we already had over 5 hours invested so we'd stick it out.   Finally, they took our phone numbers and had us wait in our cars.  They called us when we could go in.  When we did get in, the shot took seconds but the paperwork before and after took time.

I figure I spent about 2 hours on the phone on Friday and we were waiting about 10 hours on Saturday.   Oh, well, what's a day, anyway?

The happy ending is that we did get our first Covid-19 shot!!!!

The better news is that we have an appointment for our 2nd shot in 28 days. 

My Brain Surgery is Behind Me!

Praise the Lord!!  The surgery to correct the trigeminal neuralgia is behind me.

They had said I'd be in the University of Virginia hospital (about 65 miles from home) for a couple of days and after that I would go home.  I was there for 4 days but when they discovered I live alone, things seemed to change.  I came to a rehab facility here in the Shenandoah Valley, which I chose so I would be nearer home.

 

VMRC (Virginia Mennonite Retirement Community) turned out to be a wonderful choice.  I was there for 18 days and realize I needed the therapy, especially to work on my balance and stamina.  A therapist had to come check my house to be sure it would meet Medicare's standards for safety before they could send me home.  By that time, I had worked hard in therapy and was relieved I didn't need home therapy or outpatient therapy.

I asked the surgeon for more information about how the surgery was done.  There were two surgeons and they started with loupes like jewelers use.  Then they switched to microscopes.  That's when they inserted the Teflon pad to stop the friction between the nerve and blood vessel.  

The faint circle shape towards the bottom of the incision is where they used a 1" drill to drill  through my skull.  Afterwards, they covered the hole with a titanium plate and used screws to hold it in place.  I do wonder if I'll set off the alarms at the airport security lines!

At first it scared me because I was still having some face pain.  The doctor at rehab explained that the nerves in my face have been attacked and beat up for three years.  It takes a while for nerves to calm down and recuperate so I must not panic.  He was right - I've been over a week without a pain pill.  

Now I can get on with my life without living in fear of an attack coming at any time, plus I don't have to take all the medications that caused me such dizziness.  I do think the surgery was a success! 

This is all so mind-boggling to me! (Pun intended!)

 

p.s. It is now 2021 and I have been through the mill.  The surgery didn't work after all.   

 

Next, I had a cyberknife procedure in 2017.   Cyberknife for the Monster in My Face  That changed my "affliction" to Anesthesia Dolorosa.  Updates will follow.

 

 

 

My Brain Surgery is Soon

Trigeminal neuralgia (TN) appeared on my face three years ago, affecting the nerve that comes from just above my ear and branches in to 3 nerves onto the left side of my face.  An attack feels like an open electric cord is touching my face.  I never know when it is going to strike or how long it may go on.  The pain is so intense that it is called "The Suicide Disease."

An MRI was sent to UVA (University of Virginia) and reviewed by a panel who then sent it on to specialists.  The MRI shows that a nerve and a blood vessel are crossing and rubbing against each other.  In order to correct this,  I will be having brain surgery on Wednesday, September 28, 2016.   

Yes, you read correctly.........brain surgery!!!!!  Am I scared?  You'd better believe I am!  They will drill a one-inch hole through my skull behind my ear.  Then, using micro probes, they will go in and insert a piece of Teflon between the blood vessel and the nerve to stop the rubbing.  They will then put a titanium plate over the hole.

Does this indicate to you how bad the pain from the TN is?  Letting someone drill a hole in my skull!!!

The result?  I will get out from under these ever threatening pain attacks.  AND I will be able to stop the 3 prescriptions (with their numerous side effects) used to avoid and treat attacks.

I would appreciate your prayers as I go through this Microvascular Decompression Surgery in trying to escape this Trigeminal Neuralgia pain.  Pray for the surgery process to go well, for speedy recovery, and that this will end my TN pain.

Heebie-jeebies with Lyme's Disease!

I've heard of a guy being a "chick magnet" but I must be a "tick magnet."  The way I dress to garden is downright comical (and UGLY).

I wear jeans tucked into tall socks and tick spray where they meet, long-sleeved shirts buttoned to the neck, gardening gloves to my elbow with tick spray where they meet, a sweat band with a big  sunhat and spray on the hair between the hat and my collar, AND a wide  neck bandanna sprayed with tick spray.  Doesn't it sound like that should protect me from ticks? 

I still sit down to weed and it is still necessary to tether my tools to my apron because I keep losing them.

My photographer (Maribeth, my sis-in-law) thought the back view was amusing, too.  It rained so weeding is easier and muddier (is that a word?).

 

Today I came in and took my usual shower with major scrubbing all over, especially my scalp. 

 

Much to my shock and horror, about an hour later, a tick crawled down my neck.  I scratched my head like crazy and two more of those nasty creatures appeared.  They're tiny and don't die easily.  I smashed them but with great difficulty and washed them down the sink with boiling water.  

I am pretty sure they were not deer ticks. They were small and did not have the red on their bodies.

My 13 days in the hospital in 2010 with Lyme's Disease is not something I wish to repeat! 
http://angeliladventures.blogspot.com/2010/10/bullseyes-everywhere.html
http://angeliladventures.blogspot.com/2010/10/home-sweet-bed-o-mine.html

Since the 3 ticks showed their ugly little selves, I've got the heebie-jeebies, itching and feeling like more ticks are going to show up.  Do you think it's my sweet blood? 

Endodontist Ends Excruciating Pain

This was from March 27, 2012

When I told my endodontist that I was soooo glad to see her, she said not too many people feel that way.  I'd had four days of zinging pain and was barely able to sip room temperature Ensure through a straw, even the tiniest bit of toothpaste or touching my face sent me through the roof, so yes, I couldn't wait to see her!

Many people might describe these as instruments of torture but I say they're instruments that delivered me from pain. 

Most offices have some files but I learned that

endodontists have LOTS of files!

When I'm being worked on, I always try to envision what's happening.  I asked what they used to get the infection out and, as I thought, they use files..... all of teeny sizes! 

Here is my dear Dr. Jusarra Morsani and her assistant, Tanya.  This is the 2nd tooth she's done for me and I think she's THE best!

The thing I was most curious about was what they refer to as a rubber damn.  A former endodontist called it a raincoat.  Here the good doctor gets the rubber damn ready for me.

I'd been trying to imagine what it looked like so took my camera.  Oh, my, I didn't realize how strange this was!  It isolates the tooth and prevents anything from falling in my mouth while they're working.  The sunglasses protect my eyes.

Now comes the most amazing part!  Dr. Morsani works with a microscope and when it's a top tooth, she does it in reverse with a mirror.

I took a picture of my X-rays on the large computer monitor she has in the corner of the room where she works.  Somehow infection got under that 2nd crown I had gotten in December.  There was lots of infection in all four roots but luckily it hadn't reached the bone.

Now I have a clearer understanding of why flossing is crucial --- it keeps germs from gathering under our teeth.

Good-bye pain and another thousand bucks!!  
It was worth every penny. 

Hospice - a Good Decision

We’re both pleased with Ed’s decision to go with Hospice, as we now have a whole team of professionals to help us. This week, we’ve had visits from his nurse, his new doctor, the Hospice chaplain, social worker, the oxygen delivery guy, a medicine delivery, and a dietitian will be coming.  We also have a 24/7 number to call to speak with a nurse with even tiny questions. They take over all Ed's medical care.

His nurse will come weekly and later, if he needs help with showering, etc., a nurse’s aide can come. There’s also a beautiful new facility a few miles away.

Hospice people don’t sugar coat things and they discuss in different ways what Hospice means.  We had thought it was just for the last couple of weeks of one’s life, but we’ve learned it’s far more than that. I see that comfort care includes “coaching on how to LIVE” in the best manner possible for as long as you can, even if you have to adapt your activities.

I can already see a difference in Ed’s spirit and he seems more peaceful, as am I. Hey, how many patients get a home visit from their doctor these days? He told our minister that he might be around another year --- but that’s all in God’s hands.

p.s. Ed’s mind is totally intact so he’s not missing a thing.  As the admitting nurse left on Monday she said to me, “I really like Ed. He’s quite a character!”   Yep, she’s already figured out “our Ed”, hasn’t she?

Hold on Hospice

Hospice came to do a baseline evaluation of Ed today.  He says he's not ready for someone to come by to check on him, even as seldom as every two weeks.  We're glad to know there is such an excellent program here and it will be available to us in the future.

Yes, he's lost 45 pounds since October so looks very gaunt, but his meds have helped with his breathing and he seldom coughs these days.  

It seems like it's a relief to him that he's made the decision not to have any more chemo, especially since there's only a 10% chance it'll help.  We've also decided not to return to Virginia in May, but to see how things go, and I think he's relieved to have made that decision, too.  (Thank you to Maggie, our house sitter, for staying in our house there for now.)

His flamboyant, feisty spirit shone through for the Hospice nurse!    He told her he's also going to try to put on some of the weight he's lost.  He certainly is better than he was a month ago.

We know that his lung tumors aren't shrinking but, hey, he was told in October of 2008 that he had only 3-6 months to live!  He says he could be around another year!!

Prayer is powerful and I think it's helped!  Thanks to all our Prayer Warrior family and friends.

Trek to Tampa

Ed had his appointment at Moffitt Cancer Center in Tampa last week. Steve, his son, came up from Ft. Lauderdale to drive us over. The trip took about four hours because of tons of traffic around Tampa.  We stayed one night at a hotel nearby.   Moffitt is part of the University of South Florida and the campus/hospital complex is huge with many, many buildings. 

We saw Dr. Jhanelle Gray, who went to medical school at Cornell. Since Ed had been to 5 oncologists (see "A Bit of Background", below) there were lots of records and disks but Dr. Gray had read them thoroughly and came in with a paper full of notes. She took her time, answering our questions as she went. A clinical trial would involve many trips to Moffitt and, considering the advanced stage of his cancer, Ed said he does not want to do that.

She gave him a prescription for an Advair inhaler to help with the breathing, along with the nebulizer and other things he’s already using. She gave two treatment suggestions. One is a pill called Tarceva. This used to be only for a certain type cancer but is now used with other types. The other option is a type of chemo called Pemetraxed. Dr. Bellam will be able handle this her in Port St. Lucie, thus avoiding that long haul to Tampa.  

Ed will decide which suggestion he wants to try first.  He also has the option not to try either treatment for now and if that's his choice, I'll try to accept it.

Ed, Steve, and I feel it was worthwhile to have made the trip, especially since the Advair is helping with Ed's breathing. 

A Bit of Background about Ed’s Cancer and Chemo

When Ed was diagnosed with lung cancer in the fall of 2008 in Virginia, he did not want to let chemo interfere with his life.  He started chemo in Virginia and we took off to Florida in our RV.  We spent part of the winter in Ft. Lauderdale, where he continued chemo, and the rest of the winter in Ft. Myers, where he finished the 2nd course in the spring of 2009.  At that point, the treatments didn’t shrink the tumors much and Ed decided to quit chemo.

He went to Dr. Augustin Schwartz in West Palm Beach after being referred by Rene Angelil (Ed’s first cousin who’s married to Celine Dion).  Dr. Schwartz monitored his spring and fall CT scans until policies changed and he no longer accepted our insurance.

The tumors stayed about the same until the fall of 2011 when growth showed.  So, he took two courses of chemo in Port St. Lucie, Florida.  The chemo didn’t work and, much to the disappointment of his oncologist, Dr. Bellam, the main tumor grew even more.  That motivated the trip to Moffitt for another opinion.

Shucks, It's Shingles

Ed went to our Primary Care Physician (PCP) Wednesday morning for his follow-up visit after 4 days in the hospital last week.  At the end of his visit, he asked the doctor to take a look at the redness on the side of my face.  

As Dr. Pinto approached me I said,  "It can't be shingles because I had my shingles shot last fall."  He took a look, declared it shingles, sent me for blood-work, and gave me a prescription for the virus.  The dermatologist verified his diagnosis today. 

He said shingles shots are only 60% effective.  If I had known that, I might not have gone through all the hassle to get the shot last fall.   (Misinformation Melodrama - November 5, 2011)  Than again, I would have thought I wouldn't have fallen into the 40% of non-success stories!

He even said to not use my CPAP machine for a few nights because the straps are going to aggravate the red rash, swelling, pain, etc.

I think the stress of dealing with Ed's worsening lung cancer and getting cars repaired undoubtedly helped bring this on.   (I backed into a our friends' empty car last Saturday evening, breaking both driver side tail lights and causing some scraping on both cars.)

My shingles aren't super painful and I first thought it was because it was diagnosed and treated quickly.  Now, I'd be willing to bet it's a mild case because of my shingles shot!!  (I just read online that if you had the shot, you have less pain and shorter duration of shingles)

So "shucks on shingles" but when you hit 50 or 60, DO get your shingles shot!

Moving More, Mostly

Does this sound familiar?  "My New Year's resolutions are to lose weight and to exercise."  Yep, as with MANY folks, that's my mantra AGAIN this year but this time I am determined to "just do it!"
"Movement is a medicine for creating change in a person's physical, emotional and mental states."  ~Carol Welch

One of the main focuses in Weight Watcher's to help with weight loss is to MOVE MORE.   I have to tell you that I do NOT like exercise and have never found anything that I could stick with.  Also, the pain from my fibromyalgia is always there.  Nevertheless, I started at Curves a few weeks ago.

Thanks to my scuba dive buddy and friend, Chris Guld, Curves sounds realistic for me.  As she said, "You're in and out in 30 minutes." 

Some things I like so far are that it's only women (no men to gawk at you), it's 30 minutes, it's very near our house in Florida, the workout includes cardiovascular and resistance training, and the background music is peppy.  
Another motivator is that it's covered by my health insurance under the Silver Sneakers program.  As long as I go at least twice a week, it's free!!

The set-up is a circle of alternating machines and platforms.  You do a machine for 30 seconds, the PA system tells you when to move on, you stand on a little square platform and jog or move 30 seconds, then move to the next machine, etc.

  

Sally is our trainer.  She stays busy at teaching newbies and making sure we don't slide into bad habits by using a machine incorrectly. 

I notice she doesn't bug people though. 

Let's work on those "bat wing" upper arms, OK?

You can see by my "bed-head" hairdo that whenever I wake up, I just get up, put on my clothes, and GO.

It's Cool Down Time

If the beach scene on the wall is to help us feel like we're somewhere else, then I've got news for them --- it ain't working for MaryMay!

In closing, let me quote Anonymous, who said, "The only exercise some people get is jumping to conclusions, running down their friends, side-stepping responsibility and pushing their luck."  Here's hoping I can do better than that in 2012.