The first time I went to my immunologist, I was sent there by my ENT. I knew NOTHING about CVID, and when he said it was a “rare” disorder called Common Variable Immunodeficiency, that’s all I could focus on. Rare vs. Common. He also said I was to take it serious and I needed IVIG treatments. Starting yesterday. I needed to stay away from hospitals and doctor’s offices. They were death. “Go home and read about it on the Internet. Read whatever what you can.”
Me–stunned, mouth open, no idea what to say or ask. Hard enough to turn to Plan B when you don’t know what Plan A is
I had shingles. He looked at my levels. I think. He still stayed far away. He didn’t ask to see the shingles. He took the other doctor’s word for it. I don’t remember much else, because to me neuron uptake drugs are like crack or excessive amounts of alcohol. Everybody takes me for a drunk without the smell and mess. I don’t remember a lot more than that. I’m pretty sure I was there. Just ask Birdman.
I am ready. I have studied. I have had three IV infusions, and the results have not been fun. I am going to suggest switching over to the subcutaneous method. I must do this myself. I pretty much know all I should know and I am READY. I will not take Tramadol again. He must prescribe Percocet..
He starts out with his concerns. He tells me that I have been suffering from a condition called Acute Meningitis Syndrome and I can no longer do the IV method because my brain is swelling after each infusion and I could suffer all manner of bad things including stroke or death.
What is it with this guy? I had my ducks in a row. Then he throws out meningitis and stroke and brain swelling. I watch Grey’s Anatomy. I know what happens in hospitals with strokes and brains swelling.
Luckily, I was ahead of the game this time. I recovered in time to ask for the Red Ryder BB Gun before Santa pushed me down the slide. I did better than Ralphie. I told him I had already decided I wanted to try the subq method to get the Gammagard. That I wondered if I needed a small dosage preventative antibiotic (I read about this, like he told me to. He said no. I was glad.). I asked him if it was less expensive (he didn’t know). I wanted to know how it worked, and who would teach me how to do it. (A trained nurse would show me). How often (1x a week). Side effects? (Not as bad as with the straight IV infusion.)
He wrote me a prescription for Percocet, because he didn’t want to deal with loony-on-Tramadol Natalie. And I think he was tired of me talking. So that’s how it works. I thought it was Go Fish, but it’s wear them down until you get what you want. (Addicts, take note. This is the first prescription for Percocet Dr. Distant has written in 15 years. I really just want enough for the headaches. I haven’t even filled the prescription yet.)
And he asked me whether I thought it was better or worse each time. I started to tell him and he interrupted me, and asked Jeff.
Then he said to me, “You talk a lot.”
I said, “Well, no one can answer my questions but you. And you told me to research it, and I did. So I want my questions answered. I have limited time with you.”
Fair enough, Dr. Distant.
I talk a lot? Sheesh. I never talk. Never. I didn’t start that conversation with our waiter at dinner last night. No I did not. I’m not sure how we got talking about his name (Levi) and that he was not born of religious fanatics, but rather of Amish heritage. His parents were raised in Pennsylvania but his dad left the Amish long before and moved to Washington, D.C. That’s where Levi was born, and then he moved to Vegas to work for Cheesecake Factory, but he didn’t like Vegas, so he ended up at Red Lobster in St. George. That show Amish Mafia? He has the same name as the leader of the mafia.
Everybody finds out this much from their waitperson, right? Right.
Fine, I’ll shut up. (Fat chance)