My parents used to cringe when that was how I started a phone call from college. We still joke about it.
Something happened recently that I decided not to blog about. You see, I am generally a happy person, I go about my day like we all do and when some s**t falls from the sky, well, I blog about it. This blog is about the tougher part of being a single dad with a severely disabled teenage daughter. Yes, I have her, own a high tech company, and a small coffee company, and do all sorts of stuff. And life goes on, and all in all, it is pretty good. I have the respect of lots of people, good friends, great family, incredible daughter, great son, etc. But here, on this blog, you just see the pot holes. So this thing happened, and trust me, it was devastating, and I decided not to blog about it. Sort of like, heck, I wouldn’t believe it either. Wheelchair, guardianship, then this … no way.
Now that it is solved, I think, I’ll share. So, like I said …
Hey mom, everything’s fine … now.
Background: Pearlsky and her brother are pretty much the first in medical literature with what they have, there are now a couple of dozen known cases. They do not make an amino acid that we do (you eat protein, enzymes break it down, you get amino acids) (you have just graduated from Father Guido Sarducci’s Five Minute University) (yes, go watch it). Once diagnosed, we found a supplier and they take the amino acid multiple times a day. We have done lots of research on them, etc. and have actually saved other kids (found and fixed in utero). Without the amino acid, well, this blog would be titled “Single Guy.”
I have been buying two kilos of the amino acid monthly over a period of about 15 years. It is not something easy to find, and I buy it from a place that sells their stuff to the health food market and they sell vitamins, strange fish oil stuff, etc. Years ago they gave me special pricing because of the quantity I buy.
So I call yesterday morning for my monthly batch.
Oh, I’m sorry, we discontinued that product.
Never told me. She did agree to sell me the dust left on the shelf. Believe it or not, they sold me the last bit, 1.2 kilos, at almost twice the price I had been paying. And there is no more. They won’t even respond to polite emails asking who their supplier is (was).
Here I am, with about four weeks worth, and no other source. Every year or so I would look for a backup, but there really were none, at least not competitive. I was paying (out of pocket since the FDA does not consider this a drug, or anything really) $375 per month ($175 per kilo plus shipping). I did know of one other source, and yes I confirmed yesterday, who would sell it to me for $600 PER KILO, upping my price to over $1200 per month.
First, I take two Xanax and a few shots of VOX (oh, come on, of course not). Then I call two pharmacists and a friend who owns a vitamin factory. Then I reach for the VOX. Then I’m on the internet all night.
I find that most of it comes from China. One place will import it at $45 per kilo. Shipping on that is $350 and goes up a lot per kilo. There are the guys in India, but their website keeps crashing, not a good sign. All searches for domestic suppliers either come up with the company I was dealing with or people who sell it in other unusable forms.
Finally, one (fantastic, goddess-like) pharmacist got me in touch with another pharmacist who does not have a real pharmacy, but only does “compounding,” that is, makes up drugs that are needed from other stuff, nothing “off the shelf.” It does bring to mind a picture of some Chinese herbal market in Shanghai with jars of lizards in wine or whatever, but who cares if they can help.
Supposedly in ten days I can go there and pick up two kilos for $300. In plastic bags (can’t wait till the police stop me with that), not officially marked. They knew I was paying more than that, they could have charged me more, but are not. I hope someone tells me the secret password …
Now let’s check the tally:
- Carlson Labs : evil, poor business practices, uncaring
- Roxanne the pharmacist : absolutely wonderful, goddess material
Everything’s fine … now.
Hey, if you got this far …
In the “Everyone Is Retarded In Their Own Way” category … Sarah Palin goes after Rahm Emanuel here … someone is being a twit.
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