Everything’s fine … now.
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.
And, finally, new to this blog? Have you added to our Gallery? Please do.
Expecting Emanuel to resign for the remark is like having expected a resignation from Obama for his Special Olympics comments. I do believe that Emanuel should apologize for his use of the word, as he would certainly be apologizing if he used other politically incorrect language such as the “n” word or “f” .word.
The problem I have with the use of the “r” word is that it hurts most, those who are most vulnerable. The word has become an insult through its usage and yet remains to be used to describe a particular handicap that cannot be helped. It’s infuriating to me that this word is so freely bantered when we tread carefully in describing some situations of folks that are perfectly able to fight for themselves. Why do we want to add to the hurt of those who are mentally handicapped? Why do we expect them to have a stiff upper lip about that word when we have eliminated other phrases that are hurtful and used as insults for other groups of people?
OH HOW SOON WE FORGET, SARAH.
Seriously, if you call your own son “the retarded baby,” you should explode from all the cognitive dissonance if you call others out on using the “r-word.”
Palin is the Queen of the Ignorant and her subjects love her.
P.S., SD, if you don’t mind my asking, which amino acid are you referring to above? I’d like to help if possible.
Using the word “retarded” to describe someone who has a diagnosis of mental retardation is NOT the same as using the word “retarded” as an all-purpose insult. I’m not saying Sarah Palin is a great person and she may well have been talking about Trig in an insulting way, but that doesn’t mean she can’t be offended by Emanuel’s word use (though calling for his resignation is going too far). I usually don’t use the word “retarded” to describe intellectually disabled people because at this point it’s picked up so many negative connotations that it can end up sounding hateful no matter what the context is. But not everyone who uses it is being insulting.
Regarding the original post, I’m really sorry. That sucks.
I loved the link! But you and I share the same disdain, I think, for political correctness.
As for the amino acid debacle — oh, my god. I feel, lately, that I’ve just replied to your posts with direct appeals to the heavens. I have nothing to offer, no advice to give, no suggestions or anything and it feels terrible. I am relieved that things are starting to happen and hope that this shit is resolved soon. In the meantime, I’m glad you have this place to vent — I do think of you drinking coffee or grinding beans or being incredibly clever at your job as well…
Amino acids are responsible for so much one way or another it seems – Angelman Syndrome, missing or non functioning enzyme that targets proteins (in the brain) for degradation, PKU, missing an enzyme that breaks down proteins. I’m sure there are more.
Glad you got this sorted out, hope the same goes for everything else.
AWV, it’s obvious based on the article I linked to that Palin was using the word in a derogatory way, which is unacceptable IMO.
Jesus H Christ, that is fucking insanely scary! I’m so glad it’s all ok now. I wish it were harder to believe that a company would screw you over like that. Your pharmacist friend is great!
I really like Ama’s response. Ditto.
I agree fully that using the word “retarded” in the context of describing the condition of someone who is mentally handicapped is at all the same thing, not even close to using the word as an insult. The problem is that the word is used so often as an insult now, that it has tainted the technical definition of the word. For those who are mentally handicapped especially, the word hurts. Just hearing it hurts because the insult part of the word has really overshadowed the technical usage. I see no reason to cause those whose feelings are hurt by this word this pain when it is so easily avoidable. Far less vulnerable groups have managed to get words that have negative connotations about them become politically incorrect.
Single dad, you are amazing.