Drugs, Hope and Tests (For Less!)

I’ve emerged from the bitching, moaning and groaning pity party of my last post. I don’t do it often, but when I do, it’s in a big way. I cried my eyes out, ate too much peanut butter (that is my "treat" here), and got away with wearing pajamas to physio. All is well and calm now. For the moment -- my eyes are dry, the dizziness has subsided, and I am still walking and talking despite the increase of IV antibiotics to double what they were. For inquiring minds, I think the dizziness was a yeast problem in my entire body (thank you antibiotics for another lovely side effect).

I’m tired from the extra medicine, and anxious to get this IV catheter in my arm removed. It’s rudely invading my veins, the tape holding it itches, it’s honing in on the spot where my favorite bracelets go, and I’ve tried to pull it out more than once in my sleepy subconscience.

After running out of some medicine from home, the nurses order them this morning from a local chemist (pharmacy). As I lounge in bed resting from all the stair climbing and one-legged standing to practice balance, they deliver it to my room. Yes, I said deliver. No charge. And, I don’t have enough cash to cover it, so they are coming back. Yes, they will really come back. And no, they didn’t take the medicine away until I pay. Oh, and they were nice about it too. You’d have to see it to believe it.

Several of these drugs I ordered are ones my insurance has decided I would be fine without. My doctor says I won’t. So, the dance of who will pay continues while I hesitantly fork out the $500+ every 30 days for a common antibiotic called Zithromax. Here, the same exact brand and dose, one-month supply, comes in at just shy of $14.

The IV antibiotic, which my insurance is also convinced I don’t need, would cost over 10 times more at home. That’s the bottom line cost with no needles, nurse to administer it, tubing, alcohol swabs, or anything else you actually need to get it into your body. I did injection form when I was last on it, so I didn’t have to worry about the nurse. It made it a bit cheaper, but most don’t have the luxury (or the needle confidence). I took it for over five months (that was a very sad I-can’t-afford-Sushi time in my life). The flat cost of the drug itself was the same as if I would have taken it IV -- $70 a day. Here, it cost me $5 a day with everything included.

Did I mention they delivered?

I immediately want to stock up, cram suitcases full, take requests from fellow Lyme Disease sabotaged friends, and bring candied colored pills to all in need. If customs would let me, I could be the Santa of sick people, bearing a tiny reprieve from one of the challenges of managing uncontrollable, chronic disease. In this cost-effective country, I am so overjoyed at my “found” money, I almost lose sight of the unfairness of having to take all this medicine in the first place.

I guess I’ve come to terms with the needles, endless swallowing of nasty pills, and the messiness of mixing the powdered concoctions. But, every single month when I go to the pharmacy and see the big "MUST PAY CASH” next to a hand-written question mark (which means in pharmacist code, “This is so expensive, I wonder if the patient can possibly afford it”), I cringe. Lyme Disease patients always have the best stories of risking their lives to capture accidentally spilled medicine or retrieving lost pills from extenuating circumstances. I’ve been there myself. Even if your insurance picks up the tab, you know how much it would be because they feel the need to tell you. The pharmacist will look at you sadly through their bi-focals and say, “Oh my, this is almost a thousand dollars. Hope your insurance doesn’t start declining it. They usually do.” For months, I took an ultra-thick yellow paint like liquid -- $900 for the bottle, and I needed 1.5 bottles each month. I’ve never licked a spoon so clean in my life.

As of now, I know it’s a long road full of unknowns, what ifs, and we’ll sees. My hope is that one day (even if far, far away), I will be confidently well and my beloved tablespoon will be used only for dipping into chocolate frosting and other yummy things.

Tomorrow, I’m off into south Delhi (this is the only description of the location I got) for a SPECT brain scan, to compare to the one I took in April. Last year’s report was less than stellar, with words on it like “abnormal” and “hypoperfusion.” It showed decreased blood flow to certain parts of my brain where the disease had attacked. It was more pronounced on one side of my brain than the other. I wish I had gotten one done just before I came so I would have a very clear before and after. I don’t expect that this soon, the scan will be remarkably better, if at all. Stem cells are slow to mature, but the doctor wants to see. So, for $250 U.S., I will get the test that I remember costing close to $5,000 in California. A few months after I’m home, I’ll begin the battle to get my insurance to pay for a repeat so I can track the progress. Who would have ever thought I'd have a brain scan timeline??

Medical tests in this country are always an adventure, even if just a simple x-ray. This one involves lying still for long periods of time, before and after dye injections -- a near terrifying recipe for someone in chronic pain. It seems just when someone says, “Ok, now I know you are confined to that tube, but don’t wiggle at all or it will mess up the test,” everything begins to hurt worse. If you move, you commit yourself to more torture, having to start all over from the beginning.

So, with visions of a shrine built of chocolate frosting tubs representing the hope of “one day,” I’ll try not to think too far ahead. Forget being nervous about waiting for the results of the scan. The true test is in getting it finished. Everything after that is already considered victory in my eyes.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog