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My doctor just gave me a good email lashing. I let her know of the recent deterioration and that I have not been taking the supplements because we ran out and they were more expensive than we could afford at that time. Boy she let me know that she is absolutely convinced that it is a mitochondrial storage disease because of my deterioration and not being on the supplements. Of course, to avoid further lashings, I did not tell her that I had not had them in months (probably 5 to be precise) and was doing fine up until 3 weeks ago... Boy she really would have let me have it. I didn't do it on purpose, but when you have to choose between 200$ for groceries for 4 kids or $200 for supplements, which would you choose? She reiterated that just because they are "supplements" and not prescription doesn't mean I get to just quit taking them... Once again, not done on purpose, but being disabled and waiting for your husband to get a job in law enforcement, which took a little over a year, made it kind of difficult to make the "supplements" a priority. Anyway, "Supplements" are ordered now and will be resumed once they get in.
You see, I could get them from Walmart,but one of them is only supplied in 100mg capsules at 16$ per bottle of 30 capsules. I take 2000 mg. That's 20 capsules. Seriously??? I just don't think so. So I order them off of ebay which has higher dosages as well as more dosages per bottle. I just ordered a bottle of 600mg capsules with 300 capsules in the bottle. It's ok if I take a little more, the body just pees it out, so I take 2400. That's still 4 capsules a day. Which means that 60$ bottle of capsules will last me at least 75 days. Which do you think I am going to do? Buy it for 16$ for a day and a half or buy it off ebay for 60$ for 75 days??? Hmmmm. Hard choice?? But, given that, no matter which way I chose, I still have to wait until we have money for the expense of both. So there you have it.
I guess when it comes in I will see if it makes a difference or if this "deterioration" is really from something else. My muscle biopsy did not show evidence of a storage disease. So I am not as convinced as she is.
Ok, done ranting for the night.
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