One of the benefits of quarterly trips to San Francisco for my ALS Clinic visits and Botox shots, is discovering new areas of such an interesting city. There are historic or interesting things around every corner.
But first, we had to get up early to get my 10:30 Botox appointment at UCSF Mt Zion on Divisadero. The fastest way is always Highway 37 at that hour of the day. I love seeing all the birds along that road.
Here is your quarterly picture of my painful Botox shot.
Then we had lunch at our favorite deli in the Botox building. Then off to UCSF Parnassus for my ALS clinic visit. For once, they did not take my vitals again but used the ones from the morning appointment.
My friend Barb, who is a research pharmacist in Canada, had emailed me some ideas. After reading my last blog she had several ideas as to what could be happening. One was slow gastric emptying, which could be helped by a drug available in Canada. I had taken that before for breast milk when I was pumping because my little preemie could not breast feed. The other idea was that the Omeprazole could be reducing acid so much that stomach muscles take over and push food both both up and down. So I stopped taking Omeprazole, despite her warnings that quitting suddenly could lead to massive amounts of acid. (That didn’t get me until Saturday).
They were amazingly receptive to her ideas, although the emphasis was on slow gastric emptying with no consideration given to Omeprazole. (She is a research pharmacist and one who works with lots of meds). So we worked out a plan where I would try bag feeds dripped at a slower rate (2 hours vs half hour), then try domperidone, the medicine with the champagne name that we have to get from Canada. And for some reason I need an EKG before the domperidone (not in 2000) and I should have had one before Neudexta in 2016. And then the 3rd step will be a change in formula. I am also switching to the lower dose acid reducer and I will ask my GP about tapering off Zoloft which seems to be making me very dry.
Stan said he thought I was walking slower but I, in denial, blamed it on the Xanax which can increase risk of falls. But I do have to admit I am more clumsy and move slower especially when tired. And it is harder to turn in bed. And I do get cramps in hands and legs. Of course, we will get to the bottom of the reflux and headaches right when I start failing faster in other ways.
But back to interesting San Francisco. We stayed at the Hilton Financial District for the first time. It is on the edge of China Town and right across from Portsmouth Square which was hopping on Saturday morning with live music. There is a playground and lots of Chinese Chess players.
From our room, which faced north, we saw an interesting building with a blue dome on top.
Stan thought it must be an observatory. But I had to Google it – it was built by an eccentric Italian Architect in 1933. You can read about it here in an SF Chronicle article called “A Quirky Tower on Telegraph Hill”
So my ALS story will continue with quarterly visits to San Francisco and eventually I will leave my brain in San Francisco.