Friday, June 19, 2015

Updates: Protocol and Finances

Treatment Update:

I outlined James's daily protocol back in April. He's gone through a few, mostly minor, adjustments since then. His protocol as it stands today is:

Mei Huang Tea 4, 20 pills, 2 times a day
Shi Zhen 1A tea, 6 capsules, 2 times a day
Good Mood Tea, 5 capsules, 2 times a day
Cream III-VB, once a day only on his lower legs and once a day full body. We use about a jar a week, but I suspect this will go up as he is now using it on his lower legs. This is new.
Huang Lian bath  - this is new and was on back order, so we weren't charged and aren't starting it yet

The total for all this (minus the bath) was just over $1000.

Dr. Li has asked for another test from our allergist, a Progstaglandin D2 test, which is a marker for Mast Cell Activation Syndrome. Imagine my surprise upon reading the e-mail from him that he was happy to order the test - James's urine would have to be collected for 24 hours. Honestly, things like this are not in the baby books! I am certainly glad he is older.

She also asked us to come to New York in July instead of October for a session she runs of weekly appointments, one consult and then a week's worth of acupuncture. So, the beginning of this week was a bit of scrambling for travel arrangements but everything came together nicely.

Financial Update

Here's my initial thoughts on affording TCM and truly our costs have only gone up since then, especially with an unexpected trip this summer. 

The Cell Phone

What a (continuing) saga! Ting did not work out at all. It may be a good option if you are not porting a number however it was nothing but headaches for me. My number ported, but I was not able to text. I could make calls and receive texts, but I could not send any texts. I contacted their customer service and after they attempted helping me eventually their response was, "Is it raining there?" I live in a drought zone. "Well it's raining here. I think that's interfering with your signal." And this is when my head exploded.

My husband had to take over and they had him do a complete reboot of my phone, which means that I was left with a phone that could only make phone calls. I lasted approximately 1 1/2 hours.

My husband found Scratch Wireless. They offer free texting and free everything over wi-fi. If you don't have wi-fi, you can pay for a pass. You need to use their phone (it's a Coolpad something - a Chinese made smartphone. It is not fancy but it works. It's $99 though them. You can buy it used but we bought it new because I have had enough problems).

This works for us because we have no-data cap cell phone internet through my husband's work. It can come with me wherever I go. If you live in an area of high wi-fi coverage, this would work. If you would need to regularly purchase a pass, it might not be worth it.

We decided to also buy one for James. We have pre-order the Veta Epi-Pen case and up until now, he has not had a cell phone.

Edited: Scratch is no longer offering free texting, only over wi-fe. And, honestly, after six months, I was already frustrated with the service and the phone. I have asked for a "grown-up phone" for Christmas.


Satellite has been cancelled. This is much more of annoyance for my husband than I. Half the time I don't even notice if there's a buffering or if the show if running properly. That said, Sling TV has a tendency to get stuck at the end of a show and the next episode needs to be selected in order to be watched. Some channels (ESPN) don't run the commercials; they put a graphic up. You would think this is a benefit but ESPN it turns out has a ton of commercials. It's more graphic than programming. I, of course, think this is a reason to not watch ESPN, but not everyone in my household agrees.

Mental Status

The past week has been a strain: unexpected travel, unexpected testing, rising costs, downgrading of lifestyle (first world problem :-) ). I did what every good Southern Californian does when under stress - I headed to the beach. 

A small reminder to myself, that it is most important when the burdens seem high, to continue living our lives, enjoying ourselves, and making time for the fun.


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