ONE YEAR AGO

August 30, 2006 was the day that Robbi and I first met Dr. Ann Traynor.
August 30, 2007 we are returning to Maine, for the first time since we came home in February.

This is the first official visit to Dr. Ann... we had dinner with her at her sister's home in July. Today I had my first office visit with Dr. Bonnie Bidinger, since April. She had her baby and just returned to work.
Bonnie checked my Skin Score [this is done by assessing the thickness of skin over 17 areas of the body... it is a subjective test with a certain error margin]. My score today is the same as it was in April - which was the same in December 2006...
I hear from others (Devona and Amy, who both had their SCTs in April and May; and Jane, who had hers 2 years ago) that skin softening is one of the major benefits that they experienced. Robbi wonders if it has any thing to do with female / male differences. Aside from that (which may be a factor), what if Scleroderma is genetic (as opposed to viral)? Could it be both genetic AND also be able to be contracted, like some cancers? We are probably many years away from answers.

The other major development of late is that I have been using supplemental oxygen. On August 3rd I had breathing tests that showed a slight decline in my lung performance. The difference between this test and the previous one is small enough that Dr. Fisher (Pulmonologist) wants to wait until the next one to see if it is a true data point or an error. The test in October will give us a better idea.
The other test was to measure Oxygenation - how efficiently the body uses Oxygen. During a walking test, this number should be 90-100% - my number was 88%. This number qualified me for insurance-funded oxygen services. I take the tank when ever I go out. I use it most times when I get into the car, and sometimes when I get out to do something. When the humidity levels rise I need it more often.

I hope to have more stuff to write after meeting with Dr. Ann.

Stay tuned...

Road Trippin' - 7/28-7/30/2007

Suffice to say - we made it and there were no problems along the way. If that's all you care about, then you should scroll along to the next posting. There weren't any spectacular stories... just me and Jayme driving for 3 days...

For more details, read on - - -

The car was so overloaded, (backseat, trunk and roof bag) that I was sure the tires would all explode under the weight. WHY IT DIDN'T IS ANY ONES GUESS.
I chose to drive us out via a route that wouldn't take us up steep mountain roads, like the one we used when we arrived 2 years ago. I feared that we'd blow the engine. Now, I never expressed any of these fears to Jayme. He was so full of excitement to be packed up and heading off to a new career - (more on that, later) - I didn't want to dampen the enthusiasm and joy. besides, it helped me feel good too.
The only normal space in the car was reserved for the driver. As the passenger, we had to straddle the oxygen machine, (which took up nearly the whole floor), and keep the maps handy. The primary tasks of the whole trip were about tracking the progress - how far we expected to travel, by what time... how many miles we needed to drive, by days end, so we could be home by Monday evening... when to stop for meals, gas and 'nature'. We did it all really well. Only once did I make Jay pull over on to the side of the road because my Lasix (diuretic) worked faster than we could drive to the next Rest Area.

A lot of the conversations dealt with the thoughts and feelings he was having as he left his friends and life behind, in NM. It wasn't as traumatic as I expected. He had been preparing for this for nearly a year and was ready. So we began to talk about the life he was coming back to, and the one he wants to build. There were discussions about living at home, after being on his own for so long. We talked about the challenges he was to face - finding a position in a new career path. I think Robbi and I are more anxious about that than he is. Perhaps it's because we are tainted by our own negative experiences and Jayme still has the idealism that flourishes in our youth... or maybe we know how difficult it is to build something from nothing (we have both started our own businesses), he he doesn't know JACK SHIT... I hope it's the former.

So on we drove... 750 miles on Day 1... 900 miles on Day 2... and 750 and walking in the house at 8:30 PM on Day 3. On Days 1 and 2 we drove till about 1 AM. We slept in comfortable hotels, and ate well all along the way.

I was able to sustain myself fairly well. We stopped for gas, etc. about every 2-3 hrs. Getting in and out of the car was a pain in the ass... more specifically, the knees and ass. Jayme drove each morning and I took on the middle hours. This worked well because I not only get tired, but irritated as well, as the day goes on. Jayme was so good to me. He doesn't even flinch when I snap at him. In fact, he hold his own. Just like Emily, he calls me on my shit, and does it in such a way that I know I'm being irrational and so I back down. Jeez, these kids are good people.

I used the oxygen fairly often. A lot more than I expected to. Every time we go out of the car, I used it when we settled back in. The weather was very hot and humid the whole way.

So, now we are back... more to come soon...

News From The Borderland (Las Cruces, NM)

THE FOLLOWING IS NOTES FROM THE 7/25 AND 7/26/2007 - When I traveled to New Mexico.
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The saga began, yesterday (July 25th) , at 8 am... Robbi and I, neither of whom is usually doing anything that requires eye-hand coordination at this time of day, were on the road to the Providence airport. Although my flight was at 11:15 am, I had to get there very early so that I could get my special breathing equipment checked through security. Aside from that, I move very slowly and knew that I was going to get scrutinized for all the electronic stuff I travel with. I was also requesting wheelchair assistance to get me to the gate.

The ride to the airport was emotional on several levels. For one, it's always that way when either Robbi or I are traveling to be with Jayme. Which ever one us is going - that one is doing the work of both of us... 1 hug from both parents... 1 set of eyes that looks at everything as though we were both there... it's a mission of love.

Secondly, as noted in the previous posting, Robbi and I have many things to work through - and last nite I added another one to the mix. You'd think that after 26 years I'd figure out how you avoid land mines... and how not to create unnecessary problems. Think again.


When we parted at the curb, I cried. In the best of circumstances I hate leaving her... this time was extra tough.

Walking is tough normally, now I'm walking with a wheeled duffle bag, 15 lbs. of computer on my shoulder, and the Portable Oxygen Concentrator, which is also a wheeled cart. The Transportation Security Agency(TSA) had just raised the Alert Level to ORANGE! - Like that will ever make a difference... (Who are they trying to scare??? Terrorist?) The raised level means that everyone is expected to do all the things they get to paid to do every day. For travelers - it means nothing.

The flights were fine. These days, every plane is booked solid. As a matter of fact, each of the flights I was on (and several others at the same gates) were over booked and the airlines were offering incentives to anyone who would delay their travel.

The total travel time for me (10 hrs) got me into El Paso about 7 pm (9 pm at home). Jay to me to dinner and on a tour of the TV station he works for (until Friday). It was cool... very cool. Got to sleep about 1 am (my time).

The air out here is pretty dry, but it still got to me. I had trouble sleeping. Even though Jay's condo is air conditioned, my breathing was labored throughout the nite.

Today, I got to see Jayme work. He is a true professional. He interviewed family members of a guy being tried for child abuse and murder. I stood there and watched him talk with the guy's brothers and prepare them for the live interview, for the 12 pm news. The jury had just begun deliberations and these brothers were calm and articulate and believing in their brother's innocence. As soon as they were done, he shifted gears to catch up with the DA in the parking lot to get her feelings about a situation that had just developed last nite - a home invasion during which the home owner shot at the intruder. I was standing in the background, hoping to appear like I belonged with the cameraman, when the DA cut Jayme off and asked who I was. Jayme didn't skip a beat, (while I tried to evaporate into thin air), and he immediately introduced me, and joked and told everyone how I had come out to NM to help him pack and move home. Then it was right back to questions about the home invasion issue... When you realize that the DA and her assistants are real people dealing with real (often tragic) issues, and they are talking with MY SON as he searches for serious answers... it's just too awesome.

After seeing all that, I had to go and find a way to pack Jay's car to fit everything that we wanted to bring back East. I found a roof-rack set that I had to assemble. It was about 95 degrees outside... Robbi says that the New Mexico weather is like living in front of a hair dryer. I have to agree. Everytime I was outside for more than a few minutes, I had to struggle back upstairs into the condo, to suck on the Oxygen machine. I was so glad that I had it to rely on. It's not that it was a miracle worker, but it helped me calm down and not struggle for long periods of time. Perhaps it was as much a psychological benefit as it was physical.

Friday nite, the 27th, Jayme's best friend Andrew (and his daughter, Eileen) came ove to pack the car. I wasn't able to do anything other than sit and give orders. They were all very patient with me and did a great job of packing up 90% of the stuff. The rest would wait for Saturday AM.

On Saturday, Jay and I finished the TO DO list that included all the things that Robbi wanted us to do to "present" the condo for potential renters or buyers... finished packing - which still amazes me that we were able to fit it all in! Then we hit the road!!!

More about that in future posts...