Liz's Trip - Day 1 & 2 - My Adventure Quota Has Been Met

Thursday AM, I was ready to go!  I was riding to work, then heading off on my trip as soon as my
boss let me out.

Frosty definitely knew something was up, and was being very pathetic.

I left work around 3:30, it felt so good to be on the road.

About 30 miles from Syracuse, the bike started running badly.  When I gave it throttle, the engine would bog.  I moved out of the passing lane, just in case I needed to get to the shoulder.

Eventually the bike died. I got it onto the shoulder, and tried to start it - it would start, but die again as soon as I gave it throttle.  Eventually it stopped starting and an odd electrical tic showed up ...the tach needle would bounce up and down when I tried to start it.

Hmmm, fuel or electrical issue?

When I got off the bike, I quickly realized that the wind created by passing semis was going to push it over...and that my phone was almost dead.  I'm on the side of the road trying to keep my bike upright and rummage through my luggage for my battery pack.  Happily, my pannier lid was the perfect size to wedge against the side of the bike.  It gave it just enough support to prevent it from tipping over.

Yeah, ADVENTURE.

I couldn't call AMA for a tow until my phone charged, so I decided to drain my carb while the phone was charging. I was hoping that if there was crud in the carb causing my issue, it might get flushed out.

While I was working on the getting the drain screw loose, a car pulled onto the shoulder - it was my friend Ken! He was on his way to Buffalo and noticed a yellow KLR just like mine on the shoulder, lol.  He called AMA for me for a tow.  Unfortunately, only one company can tow off the Thruway, and they (of course) do not accept any travel club memberships.

While waiting for the tow truck, Ken offered me the use of his BMW GSA1200 for the trip.  I was astounded, excited and a wee bit scared, as I've only ever ridden KLRs, and Sam's V-Strom (twice). I didn't want to jeopardize my meeting Brenda and riding to Ketofest, so I decided to go for it.

Oh, the indignity

When the driver arrived, he asked what the issue was.  I explained the symptom, and that I expected I had crud affecting the main jet. His response was to ask whether I had gas, and whether the bike was rideable.  Really? You think I'd pay you a bunch of money to tow a rideable bike instead of limping it on the shoulder?  He also told us that he doesn't let his wife near his bike.  

Yeah, this is going to go well.

If Ken wasn't there, I'm not sure we would have been able to get the bike on the tow truck.  Even though they routinely tow bikes, there was no motorcycle dolly.  We had to stabilize the bike as the driver winched it onto the flatbed, avoiding stepping on oily areas on the already slick steel deck. (Well, Ken did the stabilizing, I steered)
The drive took the bike to the nearest exit, and unloaded it in a gas station parking lot.

AMA found and sent a company who would get us back to Rome for a reasonable price, we finally got home around midnight.

This morning, I woke up early to retrieve Ken's bike. The garage door of the facility broke the day before, so Sammy came along to lend a hand with opening and closing.  I was doubly grateful he was there, as we also needed to roll a Jeep around to make a space big enough to get the bike out.

I made it home with the Beemer, got it packed, and realized I had to RTFM to adjust the electronic suspension. (Seriously, electronic suspension).

I was back on the road a little after 10am, and made it to my first night's destination around 3pm.

Lara is my oldest (um, longest?) friend.  I've really enjoyed spending the afternoon and evening with her and Paul.  There is always stimulation conversation!

I didn't get much sleep last night, so I am heading off to bed now!

Tea & High Counts

I was a part of a study which was published January 4, 1979.  I’ve attached for easy viewing. 

In 1979 I was 14 years old and participated with five other thalassemia patients in a study conducted out of Rochester, NY.  I really don’t remember much of why or what the outcome was.  As a kid with a chronic illness since birth you tend to not ask many questions.  You just kinda try to do what other kids do.  The more tedious daily worries like staying alive are solely on the shoulders of those who love and care for you.

 I wasn’t told much about the study going into it.  But I had been poked, examined, and tested all my life so I really didn’t give it much thought.  I was told it was a research study and we would need to drive out to Rochester (NY) up to several times a week for many weeks.  And, this was the big AND.  AND I could not chelate during this time. We called it using the desferal.  Well, for this sweet 14 year old this was like a vacation of a lifetime. Time off from school and no DESFERAL!  NO needles every night, no itchy belly from the chelation! Every night free without being attached to that dreaded pump! At this time the pump was the size of a small coffee pot!

I remember driving out as a group the first time.  The head of hematology took us out the first day.  We piled into the doc’s family truckster. If you’ve seen Family Vacation, that’s what I remember his station wagon to look like.  On the way out there was a loud explosion.  Doc handled it calmly and pulled over to find a hole in the sidewall of the front tire the size of a grapefruit.  

Following the initial visit I do not remember the doctors continued attendance.  However we did continue to go as a group. Sometimes half at a time depending on schedules.

This is what I remember of the tests.  We arrived early in the morning following an overnight fast.   We were given plane, I think two hamburgers (at least one) from the local BK diner (BurgerKing). Then a laboratory type person suited up in a blueish suit. You know, the kind you see in the movies.  Only minus the backpack style oxygen tank. She’d (always a girl) be carrying a led container with the standard radioactive tape and markings on it.  There was a syringe for each of us.  She’d squirt the contents of the syringe on to a tablespoon of applesauce. Then, we’d eat it.

I’m not sure if it was the same day or the following day but following the apple sauce, at some point we also drank plain black hot tea.  Then we each individually had to sit for several hours in the vault.  If you’ve ever been in a bank vault or seen one in the movies that’s what this was.  The inside of this vault was about 8x12 with a dental type reclining chair.  I vaguely remember not being able to have any metal on us. Like belts, zippers, jewelry.  Once inside on the chair reclined to a “comfortable” position, the huge metal door was shut.  There was light.  And they would pipe in music.  We were encouraged to bring our favorite albums and books.  This is where we’d sit for several hours.  Alone and extremely board.  I learned to come tired.  Sleep was the best passer of time.  I'm still not sure how the vault worked but somehow it was connected to a machine able to measure the iron in the body.  The radioactive juice withing the syringes had something to do with it.

I still see and am close to one of the other contestants. She is my age so we have a lot in common.  We occasionally think back to this study and wonder why our parents would allow us to be radiated. We always come to the same conclusion.  They were just looking for someone to cure their child.  Or at least something which would allow their child to live.  As difficult as it sometimes was living with thal, I’d hate to be a parent assigned the duty of raising a thal child.  I have a Son and would not want to spend the endless hours at his bedside watching them in white stick needles of all shapes and sizes into my baby!  Yup, they had to make the tough decisions.  But always looking for the miracle.  

Of the six of us who experienced this study only two of us survive to this date.  No, no deaths were the result of the study.  Thal took them.  Most not many years followed before they succumbed to thalassemia. 

After all these years I never knew much about the results of this study I played a part in.  All I remember being told is, let’s try to keep the counts high and drink tea.  Now that I have the actual publication I find it interesting.  I don’t have any medical background so my interpretation may not be right on. 

1. Tea can reduce the amount of iron we retain from everyday foods.
2.  And with a higher hemoglobin we retain less iron.

I’m not sure how overall accurate it can be with such a small sample and really no control group.  Also has it been duplicated?  However, I am living proof that a normal iron level can be reached.  I do still drink plain unsweetened fresh brewed iced tea. Not every day but quite often.  At least several days a week and I usually order it when out for dinner.  Recently I have been attaining a much higher hemoglobin (8.5ish to now 9 – 9.5) and even with receiving more blood more frequently my ferritin has dropped to the lowest it has ever been (131).  This made me think of the study and I wanted to read and see what its conclusion was.  I’d be interested to hear from today’s doctors and researchers regarding the results of this study.

Special thanks to my niece Samantha for helping me find and get my hands on the publication. 

CAF Confrence (The Ride Out)

Mr Grey resting in his stall

Mr Grey and I made it to MD.  Ride out was a met with some obstacles.  Ride through NY and PA was pleasant and DRY.  As soon as we hit MD the skies opened up!  Take note, even if your phone is waterproof.  It may not be WATER proof.  Humidity and or water seeped into the charging port and prevented it from receiving any charge even though it clearly had a battery with the charging signal.  Eventually it died and I had to navigate old school.  Yup, transferring map info to paper to place in the clear window of my tank bag to read as wheels rolling.  Do people still do this? yuk!!  Dried phone with a hairdryer at the hotel.  Seems ok now.

My riding "pal" thal tried to come alive today.  Between the early morning (kickstand was up at 5:30 am) and no breakfast.  I started to feel a little icky.  I made a quick pitstop and fueled up with breakfast and a coffee shake.  Don't know what it is but the sugar and carbs seem to work every time!

Had a great offer from some new friends to go into DC to the Cheesecake Factory but this old man is too tired to hang with the youngsters tonight.  Settled for a great burger.

Local IP and one of the best burger I've had in a long time.

Looking forward to tomorrow!

CAF Confrence

Mr. Grey and I are ready to put this town in the side mirror. Kickstand up first thing in the AM. It'll be a full eight hour ride with stops down to Hyattsville, MD.  With the forecast of rain and possible thunder showers for most of the day all along the route, I'm sticking to the interstates this ride.  Hopefully we can avoid anything too sever.  Always an adventure!

It'll be great meeting others living with Thal. And seeing what they are doing to make life good.  Additional posts to follow. LIG 😎

Liz's First Long Solo Trip!

This Thursday after work, I will be heading west on my first solo adventure.

Right now, the plan is to head west to Iowa, ride along the Missippi River up to Minnesota, then head to the Chicago area to meet up with a friend and continue on to New London, CT for Ketofest.
In all, it will be about 3500 miles for me and the Moose.

Brenda also rides a KLR. It isn't too often you see women on KLRs, let alone two of 'em travelling together.  I'm way more excited about it than I probably should be!
This is Brenda's first multi-day motorcycle trip, she has been planning this for months.
Her bike is in nearly pristine condition, so the only work she needed to do is to increase her comfort.

Yes, I'm scared.
I have no idea how different things may have turned out if Sam wasn't there to advocate for me when I hit the deer in South Dakota.

I'm doing things to protect myself - carrying the SPOT tracker, and I upgraded both brakes and lighting on the Moose...but still...

Patiently waiting to hit the road.