Driving At Grandma Ida's

Grandma Ida thought it would be fun to buy these cars for the grandkids.  If you buy one of these, just make sure you have plenty of room for the kids to drive them or else count on alot of "accidents."

Berkley has one of these herself, so she was an experienced driver.

Joshua and Berkley look like they're going out on a date.

Neal was on accident repair patrol.

One accident out of about fifty.

Miriam wasn't brave enough to try driving and Seamus couldn't
wait until he was old enough.

A Visit From the Grandkids

Melissa and her two kids came for a visit on February 1st.  It seemed like a whirlwind visit.  Gregg was working around the clock and Melissa was trying to get some work done while she was here and I was trying to keep to kids entertained, which was exhausting because I'm not used to it.

I wish they would move here because the kids seem to grow up so much inbetween visits.  We did get to get all the grandkids together which was fun, however, it truely makes me feel my age and the effects of EDS.

Berkley and Miriam were best of friends

Trying to get these girls to hold still for a picture was impossible

Seamus was excited to be there too.

Joshua is growing up so fast.  He'll be 5 yrs. old in April.

Grandpa and Seamus have look alike hairdos.

Miriam is still always on the go.  Nothing scares her.  She looks a little
like Melissa here.

Joshua cleaning out the stuff in his shoe.

This is the only picture I could get with all four together.
It was too much to hope to have everyone look at the
camera at the same time.

Tried to fly kites without a breath of wind in the air.

Berkley bought sunglasses for all the kids to wear.





A Morning At The Zoo

And, no, I'm not talking about a typical morning in my life.  Although, at times it can be considered a zoo around my house.

I hadn't had a playdate with my granddaughter Berkley for awhile and wanted to spend some time with her.  I heard that Cyndie and Tim were taking Seamus there, so Gregg and I decided to tag along with Berkley.

It was a gorgeous day in Phoenix, so everyone else had the same idea, but it wasn't too bad.  It was so fun to see the kid's reactions to the animals.  Especially at the petting zoo.  A couple of highlights were when we were by the bear exhibit, the black bear must have been hungry because he was pounding on the door where his food comes out of.  You could tell he was one strong dude as he "boxed" at the door with his fists.  It sounded like the door was going to break down.  We also went into the monkey exhibit where you can walk amongst the (small) monkeys as they perform their antics.  There is a rope that they crawl across that goes right over your head, you just have to hope they don't decide to potty when you're under them.

Seamus and Berkley had a good time and were the best behaved kids I have ever seen.

Seamus was a real trooper

Berkley said "Hi" to all the goats. 

This one was named Brownie,  He started wagging his tail
and Berkley tried to grap it, but he was wagging it too fast.

The tags on the toys are always more fun than the toy itself.

We ate lunch next to the Giraffe exhibit.

By noon we were worn out, so we headed home.  Even Berkley said she wanted to take a nap on the way home.



Alone In A Crowd - The Pain of Ehlers Danlos

I am lucky enough to have close friends and family around most of the time.  But, there have been times that even with all my friends and family around I have felt profound loneliness.

One such time was before I knew I had Ehlers Danlos.  I had been experiencing tremendous pain and trips to my primary care doctor were proving futile.  He would give me pain medicine and tell me to come back if it continued.  Finally, he referred me to an Ortho specialist.  I just knew this guy was going to figure out what was wrong with me.  I even took the day off of school to go see him, I was excited to get to the bottom of this.

I arrived at my appointment with all my MRI's anxious to see what he would say.  He came in the room, not an overly friendly guy, but OK.  He started looking at the MRI's and xrays and didn't have much to say.  He said he didn't see anything.  I felt so deflated.  He did a physical exam as I explained where most of the pain was and how it felt and how excruciating it had become and impossible to live with.  He said he had no idea.  I explained to him that I really need help with the pain as it is too much for me to deal with.  He looked at me and stormed out of the room.

He came back a few minutes later and in an angry voice said, "What do you mean you need help with the pain?  Drugs?  Shots?  What?".  I was stunned and just looked at him because I didn't know what to say.  He slammed the door and the nurse came in a few minutes later and gave me a printed out report and said I was done.

I got to my car and read the report.  At the end of it he wrote, "Asked for 'something' for pain.  Did not give narcotics."  I felt the blood drain out of me.  It was at that moment that I felt a profound loneliness I had never experienced before.  I was feeling something that I could not explain to others in a way that they could understand.  Even more horrifying was that I was alone in this battle and trying to function with constant pain that I could find no relief for.  Even my friends and loved ones could not understand.

At this time I was reminded of Christ in Gethsemane where even God retreated to the corners of Heaven as Christ suffered alone.  But, in His suffering an angel appeared to Him and gave him strength.  My angel came in the form of a former doctor who helped me with my blood clot.  He was sort of a father figure to me and was very caring and understanding. 

I later learned that the ortho specialist had immediately sent out his report to all my doctors so they would be alerted to the fact that I was seeking drugs.  This doctor I went to couldn't believe the ortho doctor did that and said he should be barred from practicing.  He then hugged me and said we're going to figure this out.  It was he that referred me to the right doctors that finally diagnosed my EDS.

Since then I have formed a support group and have attended conferences and have met so many people that understand my pain before I even have to explain it to them because they feel the same thing.  It comforts me and gives me strength to know that I am not alone.  We are fighting a battle because most doctors know nothing about this or they don't understand the scope of how EDS affects every part of the body.  Along with aching, burning joints and muscles we deal with up and down blood pressure, adrenaline highs and lows (energy highs and crashes) several times throughout the day and constant dislocations.  Chronic fatigue from sleepless nights, weak muscles, fragile skin, digestion problems.  All these things are going on in our bodies at the same time - it's crazy.

We confuse doctors, we are high maintenance patients.  We say we're tired all the time, but they see us when we have an adrenaline high and see all the energy we are displaying at the moment.  We say our pain is extreme, yet nothing shows up on MRI's and we look perfectly fine.  Our skin is smooth and velvety.

Thankfully, there are a few doctors who are devoting their lives to researching this and getting published.  They even give up some of their precious time to come and speak to us at conferences because they know how desperate we are to find answers and get relief.  Thankfully, I have a doctor who believes me and is reading the research that I give to him.

I have made it my mission to educate everyone around me about Ehlers Danlos Syndrome so that no one has to feel the loneliness that I felt after my visit to the ortho doctor.

Christmas 2011

I'm finally getting around to putting up Christmas pictures, but when I looked at my camera, I guess I d8idn't take very many.  I was very tired this year and felt like I had to push through everything.  We took our friends the Riemenschneiders to the Temple Lights and they loved it.  Melissa and Garren did not come this year because she and the kids are coming in February.  It feels like a big hole in my heart when I can't have all my children and grandchildren together at Christmas.

So we had a quiet Christmas with Gregg and I going over to Cyndie's and Tim's for dinner on Christmas Eve.  On Christmas day we went to church (Gregg spoke) then Cyndie and Tim, Ashley and Bryant and Grammy Ida came over for a brunch and open gifts.  Neal and Krista spent Christmas with her family this year, but we did see them and Berkley at Grandma Joyce's later on Christmas day.

Seamus learned real quick how to open gifts

Gram Ida and Seamus

Seamus is still opening presents

Bryant and Ashley came over from SanDiego where he is stationed
as a marine.

I have always hated January.  I get the after holiday blahs, but at least I don't have to go back to school.  I really hated starting a new semester right after the holidays and jumping right back into craziness that comes with teaching.  I don't have the strength to do it anymore.  I am watching Seamus a couple of times each week so Cyndie can work in Gregg's office during tax season.

You Know It's December in Arizona When . . .

It's been hard to feel the Christmas spirit this year.  Pain from EDS keeps me from doing all the things I used to do and takes the fun out doing what I can do.  In Arizona you have to try a little harder to get into the Christmas spirit because we often enjoy 60 to 70 degree weather which is Spring or Summer weather for some people up North. 

But, there are a few signs that tell us that Christmas is near, such as:

A sprinkling of snow on the Four Peaks mountains just north of the valley.

Citrus ready to pick.  Last year we had a lot of little oranges, this year we
only got a few, but all of them are large.

Some rain clouds in what is usually a cloudless sky.

There's nothing like going to see the lights at the Arizona Mormon Temple to put
you in the mood for Christmas.

Ashley and Bryant's Military Ball

Written by Ashley:
Bryant and I went to our first military ball this year on November 19th. We were very lucky and had it at the Disneyland Resort! We made a weekend trip out of it and stayed at the resort. Becaus we were guests at the reosrt we were able to get into Disneyland an hour before every else, which was awesome! We spent the morning going to both parks, and I spent the afternoon getting dolled up :)

The ball was packed! Over 1,000 people there. It was the most formal thing I have ever seen. It felt like something from the 50's because we were all dressed up and they were playing 50's music. The first hour was social and picture hour. Some of the people I met were covered in medals and ribbons (meaning they have been in the military for a very long time). They even socialized with us! They finally let us into the ball room which was massive. Nicely decorated. Before dinner they did a ceremony. It was very emotional. They talked about the pearl harbor and 9/11 attacks and those we have lost. I don't think there was one dry eye in that place. A couple of the head people of 9th Battalion had a few words to say as well.

After the ceremony, they served dinner to the 1,000 of us there. Not your typical dinner...You know where they decorate they food and the plates. After we stuffed our selves it was dancing time!

A moment of slince: The empty chair and single lone table draped in black signfy all of our fallen comrades who were not with us that evening, because they have given their full measure of devotion to our country. The single lighted candle reminds us of the flamae of eternal life that the momory of our fallen comrades will be with us always. The purple heart medal is displayed to reflect the shedding of blood and the ebb of life in battle.

It was very cool to be a part of. Unlike anything either of us have been to before. Good times had by all :)