Extension trial update: Month 8, Part 1

While I was traveling for work, I received several calls from my new care coordinator, "B", for the extension drug trial in which I am participating.  He told me the window for my visit with Dr. G and getting my blood work done, etc.  I told him a couple of days to try to schedule with the doctor and Sonora, and told him that Wednesday did not work.  He scheduled my appointment on Wednesday.  I had forgotten to put my appointment with Dr. H on my calendar, so it was good that he didn't schedule that day, but I feel that he was not listening.

There were a couple more calls to confirm.  I was confused that I was seeing this doctor since I usually see Dr. M quarterly when he runs through the tests with me, but I didn't think I was seeing Dr. G during the extension trial.  B confirmed that I was seeing Dr. G.

Although my appointment was at 9 so I thought I wouldn't get much work done, I decided to go into the office before going to Dr. G's office, and it was a good thing.  B called to let me know that he was running late because his patient was running late, and asked me to come a little later.  I arrived and he seemed unorganized, unsure what he was doing with the binder, and I think he was still working with the other patient as well.

He found his checklist in the binder and asked some indecipherable question about getting my labs done.  I thought we were going to Sonora next, but he didn't schedule it.  I was shocked: he knew (and said again) that I was a "hard stick" (as he called me) but he didn't schedule it.  He thought maybe we could go back to Hope and someone could do it, but he didn't have any confidence in his ability since my previous coordinator (who he indicated was good) was unable to do it.  I asked if we could do a walk-in at Sonora instead of scheduling but he, well, first, didn't realize that I don't pay for it, they do, and second, didn't know what he was supposed to take for billing.  (I mentioned that they billed me last time and they aren't supposed to.)

Dr. G took me to a room for some simple (lame) questions, but he had to leave the room to find B and I heard the doctor kind of letting B have it--he didn't provide the right pages for the notes, he didn't mark the pages the doctor was supposed to fill out, he didn't fill in the part he was supposed to fill in...

B was apologetic for "inconveniencing" me, as if I'm not inconvenienced EVERY MONTH by these appointments or even EVERY DAY by having MS.  I'm really mad at myself for being so damn polite about it.  He has NO fucking clue how much of an "inconvenience" it is that I have to go back tomorrow--he'll schedule this "first thing in the morning" so that I'm still in my "window" for the visit.  My choice was go back today (when am I going to work?) or go after 7 am tomorrow. 

I took an hour out of my workday to go today.  Tomorrow, I have to be in Tempe for Dr. H by 9:30, and will probably be out of the office for 2 or 3 hours.  I promised to be on a conference call at 9 so I was hoping to be parked in the garage for the doctor's office by then.   Since I have class tonight, I'll be getting home around 10 and then back up super-early to go to this appointment he scheduled (not at Sonora, at the research center, so we'll see if I end up at Sonora anyway).  My drive for the day will be "east California" to North Phoenix to Tempe to Arcadia to "east California."  That's not an inconvenience--it's a punishment.

I don't think it's unreasonable that I'm totally furious about this, but maybe I'm overreacting since I barely got any sleep last night either.   I've been having a LOT of trouble with my laptop lately not being able to load webpages, although sometimes some work fine some of the time.  It took me a half an hour to complete my Amazon order which included a medication/supplement I take and the attachment for my Foodsaver.  I was frustrated and a little angry that I couldn't get any real help (and my PC is fucked too) and I can't figure out how to fix it.  (Although my IT guy gave me some ideas today, so we'll see if I can fix it "on my own.")  I have so little productive time that it is really frustrating to be left to deal with things I don't understand because I haven't been left (or allowed?) to deal with them before.  Grrr.

I got some energy around 10 (he was already asleep!) so I worked on stuff I needed to get done but keep putting off because I have no energy by the end of the day--I washed and dried all the mason jars, cleaned the kitchen, did some laundry--you know, the exciting stuff.  When I went to bed it was nearly midnight.

The last days of Ptolemy Grey

I'm a fan of Walter Mosley writing so I may be biased but I really liked this book. I listened to it almost constantly when I was in my car. Mr. Grey's battle with dementia is described with such vivid detail of his earlier memories and his battle to live life on his terms. It was engaging. The characters are amazing. This is definitely worth reading.

Worst dinner guest ever

After bowling (terribly), we went to Cafe Zamora in Avondale.  I was there once before, when I was just learning about my diet restrictions.  So today, I asked about the chips; the first girl left to check and never came back and the second girl said that they make their own chips and fry them separately.  So I had some chips and their awesome garlicky salsa.  Then I had a 3 taco plate--one each, chicken, fish, and shrimp--with rice and beans, no cheese on the beans or chicken taco.  It was excellent and I had enough left for another meal.  We also took some chips and salsa to go.


I think it's funny, but I'm only 3 of the 5!


Later, we went to our friend's house to watch the Superbowl.  I realize that I'm a horrible dinner guest now, but I ate a big lunch, had dinner waiting at home if needed, and had chips and salsa to munch on.  Plus, they like me!  She made posole and went through the ingredients with me.  The only questionable ingredient was the organic chicken broth, which contained yeast extract.  After all my research, I still don't know if I can or cannot have that.  So I thought I wouldn't have any, but later I gave in.  Because I love posole.  My husband doesn't, but I (heart) posole.  And it was good.  And I had some of the chips and salsa from Zamora's.

I realize that I my dietary restrictions make some people uncomfortable and make some people curious.  I know some people want to help and some people want to ignore the issue.   I know that it's not so simple as eliminating one thing from the menu.  I realize that I am the worst dinner guest ever.  But it's not impossible to feed "one of us" a tasty meal, and if we can't eat what you have, be graceful like my friend when I thought I wouldn't eat the posole, and don't make a big deal about it.  There's always next time.  There is a next time, right?  And an Amazon wishlist...

Addicted to Pinterest

Source: a-pink-dream.tumblr.com via Vanessa on Pinterest

According to this, I'm happy, elegant, peaceful and patient.

Foodsaver

I got one and can't wait to use it for freezer meals and salad in a jar!

Classy

I had class in north Phoenix.  After class got out, I went to Sunflower Market and Sam's Club.  I like to go to Sunflower occasionally, although they have a lot of the same inventory as Sprout's--which is more convenient for me--they have other items I don't see at Sprout's.  They had a table of gluten-free products so I went through it and found a couple things I could have and bought a few other things.  At Sam's, I like to get frozen fish, and sometimes nuts such as pistachios, or Trio bars; the rest of my shopping at Sam's is for my husband.

Agility class

We were able to run a course twice and changed the second run.

Teka had great weaves.  She came back out of the tunnel instead of going through once.  She did better with the rear cross I did the second run to influence her to not go on the dog walk.  On the second run, I also used no words or verbal commands for Teka, and instructor J said it was "great."

Instructor J loved Cassi's "go on" that I use at the end of the course; Cassi really picked up speed.  She was slower on the rest of the course.  She paused before the tire jump but it was just briefly, and she didn't have a fast teeter but it was okay.

I used "tight-walk it".  Both did good on wrap on the second course.