Three months. That’s how long I want to wait to go see my retinologist, which means I have one and a half to go. I should have already seen him.
I should have already started my interferon.
Interferon. I still don’t have it. Here’s why: Remember, when I talked about waiting for the insurance company to approve the medication? I called several times and it hadn’t been approved yet. About two weeks ago, I called again. This time the pharmacy told me they couldn’t get it. Really. After weeks of waiting for insurance approval, they tell me they can’t even get it. And, they can’t tell me if this means it was approved by the insurance because the prescription is no longer in their system. They kicked it back to OHSU and the Casey Eye Institute doc.
“So, what do I do?” I asked them.
“You have to find a specialty pharmacy.”
“Great, tell me who to call.”
“We don’t know.”
“You don’t know? So, how am I supposed to find one?”
“Call your doctor.”
I called my doctor’s office at OHSU. The lady I spoke to had no idea what to do or where to look, except that she knew that Walgreen’s sometimes did “specialty” medications. There is no Walgreen’s where I live. And, if interferon really does make me sick, I don’t want to have to drive an hour to get the medication if I don’t have to.
A hospital, I thought. A hospital would know where to get it. I emailed St. Charles in Bend, the largest hospital in the area. It’s been five days and I haven’t heard a word.
In the meantime, I’ve stuck to the Wahls Paleo Diet and I feel better. No muscle aches, I have energy, and the rash that’s been on my face for years has lightened up, and a place on my nose that’s been sore for years isn’t sore at all any more. It makes me hopeful.
For four years I have been on hard hitting drugs that have done nothing at all for my eyes. I’ve also taken eye drops the entire time and had injections. So, I’m thinking of giving this new way of eating (and exercising) a trial period. Three to six months and still using the three eye drops. If I notice my vision getting worse, I will call the doc.
I think it’s getting better though, my vision I mean. Last night, I was writing in my “Wahls Log” in bed. My bedside lamp is pretty dim, and I haven’t been able to write and see anything (paper and pen writing) for a long time. Another hopeful sign.
Another thing that I have come to realize, doctors treat symptoms, not causes. They don’t know the cause with me. The protocol that I am giving a whirl, and will do for the rest of my life if it continues to benefit me, repairs my cells…the cause.
For clarity’s sake, I’m not recommending that anyone else go off and experiment on their own. I’ve had a long time with this stuff…over eighteen years. I know my way around it pretty well. And, if you’re at the beginning especially, you need to see a doctor. They can stabilize you. I’m not giving my doctor up…at all. I’m just waiting a little while longer to see him again to see if my lifestyle changes are having any impact. If they aren’t, I will figure out the whole interferon thing.
Sometimes…risks are worth taking. Sometimes…they’re not. We will see.
Blind Possibility 