Friday, January 29, 2016

At what price...

The FDA issues a strong risk advisory against a medicine I've been taking for almost five years. My doctors won't prescribe it anymore and they have no alternate suggestions. Since the medicine helps me digest food that I can't normally process due to gastroparesis, I'm stuck - literally. And I'm scared.

It's easy to understand the physicians' concerns about liability since the medicine can, according to the FDA, cause cardiac issues; however, the drug is available in other developed countries. Are we, in the U.S. to be deprived of this right? Is this "big pharma" running the show? Is it more lucrative for them to have those of us who rely on this drug end up in the hospital and, potentially, dehydrated, at the brink of starvation, and in need of radical surgery?

Here are my options:

1) Stop the medicine cold turkey and wait until I am sufficiently impacted and in enough pain to be admitted for emergency treatment.
2) Find and try supplements (pills, teas, oils, balms) from thousands of "natural" stores or websites that are eager to fill this gap.
3) Risk buying the drug from another country that only accepts e-checks.
4) Begin a purely liquid diet to see if I can manage it myself.

In the past few weeks, I've adopted a rudimentary combination that includes substituting the medicine with an organic supplement pill, edible oil and a custom herbal tea blend. I risked the purchase from New Zealand by supplying them with both my routing and account numbers from a personal checking account where it will take up to three weeks to get the darn, non-FDA approved pills. And, I am gradually switching to an all-liquid diet.  But, I'm angry. I can't eat and I can't poop. If this is TMI, you haven't been reading my blog very long because I share everything to try to help others. 

Lastly, I've also found a supplier of medical marijuana that I am now using for the joint pain from Lupus and my high anxiety that is attributable to constantly performing triage on myself every single day and trying to manage physical and cognitive medical problems WITHOUT all my doctors communicating with one another. It's exhausting. But you know that already.

The price tag so far for all the crap I've bought and tried this past month including my "regular" prescriptions is nearly $1000 and I don't know what, if anything will work. But the toll it takes on me is much, much higher. If another doctor fails to return my phone call, I'll, I'll .... do nothing or go to sleep. I've been a professional patient for 20 years now due to Stage IV Lymphoma and Lupus. Harsh chemotherapy is certainly the gift that keeps on giving!

There's one final possible solution discovered by someone in my online gastroparesis support group that I find hilarious. Eat sugar free Gummy Bears available on If you read the reviews, you will laugh yourself silly. One of my fellow GP sufferers is actually going to try eating them rather than force-drink the gallon of medicinal liquid provided for a colonoscopy that we literally can't stomach.

At least there's a light at the end of the tunnel - pun intended - and it's possible that it will be gummy bears to the rescue!

Sugar Free Gummy Bears from

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