Sunday, January 24, 2010
Oh...bleach shouldn't be used on human skin? Well, what about bleach wipes? Wait, those either? I guess that warning label makes a lot more sense now:
Friday, January 15, 2010
I was at the salon recently, getting a cut from Carlos. I always tell him, “Do whatever you want.” The first time I said this he broke out into a huge grin, and although he always does a fantastic job, I thought, Why is he so happy? What did I just agree to? There was no need to worry about Carlos, of course. But as he was snipping away this time, he paused, then shouted, “Look, you have a gray hair!”
I saw age 30 a couple years ago, but I had yet to see a gray hair. So I yelled, “Pull it! Pull it!” He wouldn’t do it, so I asked him to single it out so I could pull it myself. I think Carlos assumed I was having a fake meltdown, but I still believe a minor anxiety attack was the correct response. When I saw it was snow white, I was both horrified that he was right about its very existence, and relieved that it wasn’t dishwater gray. It also reminded me of my grandmother, Celia, whose snow white hair always looked so pretty, albeit perpetually in need of a slight trim.
I was hoping that Snow White was an anomaly. A single strand that peaked before its time. But after my experience this evening, I know it wasn’t.
Normally, I don’t think this would be hitting me so hard but about half an hour ago I finished “Still Alice,” by Lisa Genova, a novel about a woman’s rapid descent into early-onset Alzheimer’s. It was very moving but deeply depressing, and left me vowing that my next read would involve a Parisian police detective who solves a heist at a candy factory with the help of his friends, a pair of married chocolatiers. Or something similar.
The malaise caused by the book will pass, but something else is weighing on my mind tonight. My birthday is about 4 weeks away. I don’t particularly love birthdays, but this time of year also marks another anniversary – the onset of my immune system disorder, CVID. I will be celebrating by starting home care, which my insurance company just approved. A nurse will visit me every four weeks to administer my intravenous immunoglobulin treatment (IVIG), replacing my monthly trek to the infusion center at my immunologist’s office.
Intellectually, I know this is a great development. Going to the infusion center isn’t fun. I get there at 8:30 a.m. and am hooked up to my pre-meds (a cocktail of Tylenol, Benadryl and a steroid, to prevent reactions) by 9:15 a.m., and start my infusion at 10 a.m. I then spend 3 hours hooked up to the IVIG, during which time I sleep, due to the Benadryl. Afterwards, I trudge out, exhausted from the medication and the amount of liquid being pumped into me, and pour myself into a taxi so I can go home and sleep for the next four hours and gradually regain energy over the next couple of days.
At least if I get it at home I don’t have to leave, don’t have to wait for the nurses to attend to anyone else, and don’t have to worry that I won’t find a cab during the lunch rush.
The home care company called me several times. I have, thus far, spoken to an intake coordinator, a nurse and someone from the pharmacy department. They all asked me a myriad of questions, including my height, weight, medications, fruit intake, freckle-to-skin percentage and linen thread count. They also explained that I should expect an introductory package in a couple weeks, which would include basic supplies. Like an IV pole.
My very own IV pole.
Nothing screams, “Hey, I’m young, I don’t have gray hair and I’m available!” like your own IV pole. In fact, I may add it to my eHarmony profile.
It’s funny, because reading “Still Alice” reminded me that I am actually very lucky. My immune system deficiency isn’t fatal, although it does increase the risk of other illnesses. It will never impair my cognitive function. And by discovering it and receiving treatment, I am sick much less often than I ever was before.
But the last two years has seen my life change in many ways, confronting possibilities I never thought I would be considering at this age. I can’t believe I am old enough to have an IV pole, let alone a home health care worker. I’m a little worried someone will pick me up one day, drive me to a nursing home and park me in front of a television, where I will nap in a wheelchair and only wake up long enough to complain that the television is both too loud and not loud enough.
Unlikely, I know. But frankly, I was kind of hoping that if I had to have a lifelong illness that I would at least get to keep my hair color for a few more years.
Oh well. I guess that’s why they invented Garnier Nutrisse.