Donate Your Blood to Me Now
It's been over a year since my last post. Maybe Facebook is sapping my creative energy, less than 500 characters at a time.
Anyway, it's been a weird year, not one of my best. I knew I was due after more than seven straight years of unprecedented joy, but I expected my comeuppance would take the form of relationship dramas or unruly adolescents. I've had a hard time wrapping my head around the events of the past year. That's why I haven't written about them - not a word, until now.
(Except for my broken arm, which doesn't count because that was all about high heels and steep stairs. Also I got raced to the hospital in a Telstra van, which demanded documentation.)
In two hours I head off to the salubrious Royal North Shore Hospital, resplendent with its sticky plastic chairs, ripped copies of Women's Weekly, and misspelled notices blu-tacked to peeling manila walls, for a blood transfusion. Ew, right? What's worse is that it will be the first of many - one a month for the rest of my life.
This is the culmination of a year that has included: the broken arm; a peptic ulcer; a brain seizure that made me fall off my chair, lose my English, and get carted off in an ambulance; a sudden inability to lift my left arm above my shoulder due to a compressed nerve (wtf?); blood in my stool (ew); skin erupting with eczema that had me itching like a junky; subtle, pervasive exhaustion; and last but certainly not least - constant, raging, rampant "hay fever" that turned out to be much more sinister than I ever imagined.
Now, the dominant story I've told about myself is that I'm "healthy as a horse". I loved saying to doctors that I'm not on any medication; there was a smug, self-satisfied tone in my voice that I never managed to eradicate until it was snatched away cruelly by another story that was becoming more visible the longer I denied it existed. There was something really, really wrong with me.
There were big clues. I've listed them, above. But even though I'd schedule daily naps, setting my phone alarm 40 minutes ahead so I could curl up on the couch in my office between appointments with a scarf over my head to block the light, I clung to the Myth of Good Health. Despite the development of an obsessive loyalty to one brand of tissue (Kleenex with Aloe Vera -- gentle on the nose but terrible for cleaning glasses) and set a world record for consecutive sneezes in a bottle shop (21) because SNOT RULED MY LIFE, I shrugged it off as hay fever and blamed the leafy North Shore with its conspicuous absence of petrol fumes and aircraft pollution.
Finally, when I started using more tissues at work than my clients and I noticed people backing away from me to avoid shaking my hand, I decided enough was enough and got a referral to an allergy specialist. I explained to him that my American sinuses weren't coping with the profuse North Shore pollen and that I needed the big guns (needles) because mucous production was interfering with my day job. Twelve skin pricks, ten vials of blood, three stool samples, one urine sample, an endoscopy and a colonoscopy later, the good news is that I'm not allergic to anything.
The bad news isn't really that bad. I have this disorder called *big breath* hypogammaglobulinemia, with some Hashimoto's Disease (a thyroid thingie) thrown in for some added international flavour.
This was, as my doctor helpfully pointed out, "a very unexpected result", meaning it's odd that my body has done a big Fuck You and quit producing some of the antibodies necessary to fight infection. No one knows why and there's no cure, but it's not too hard to manage and explains why I've spent years sneezing and blowing my nose. It's likely I've had infections for a long long long time. Gross, right?
But I'm not dying or anything like that, and even though this strange disease may shorten my lifespan (no one's told me that; I'm just being dramatic), now that I'm being treated appropriately with a lifetime supply of blood transfusions, antibiotics, Somac and Thyroxine, I feel better than I've felt in years. The doctors say the transfusions will eventually supplant the antibiotics which doesn't make me happy because I'd heaps rather swallow a daily pill or two than have hundreds of strangers' blood products pumped into my veins every month.
It was pretty confronting learning all this on the eve of my 46th birthday, which has brought with it the awareness that I'll never have another baby and it's likely more than half my life is behind me, but, you know, it could be worse and I'm going to approach this next phase of my life with the heart of an explorer.
PS I've returned home from my first infusion, and I'm pleased to report that it was for the most part unremarkable. The views from the 12th floor of the hospital are stunning, I didn't get sick, and being surrounded by people getting their chemo treatment made me feel chagrined and stupidly self-absorbed. My squeamishness about others' blood products was diminished by a friend who reminded my that "all those people's life blood, the carriers of nutrients and fighters, pledging allegiance to a new body - exciting! - is infused with the generosity, strength and compassion" of the blood donors.
Stardust, she told me. We are stardust.
Anyway, it's been a weird year, not one of my best. I knew I was due after more than seven straight years of unprecedented joy, but I expected my comeuppance would take the form of relationship dramas or unruly adolescents. I've had a hard time wrapping my head around the events of the past year. That's why I haven't written about them - not a word, until now.
(Except for my broken arm, which doesn't count because that was all about high heels and steep stairs. Also I got raced to the hospital in a Telstra van, which demanded documentation.)
In two hours I head off to the salubrious Royal North Shore Hospital, resplendent with its sticky plastic chairs, ripped copies of Women's Weekly, and misspelled notices blu-tacked to peeling manila walls, for a blood transfusion. Ew, right? What's worse is that it will be the first of many - one a month for the rest of my life.
This is the culmination of a year that has included: the broken arm; a peptic ulcer; a brain seizure that made me fall off my chair, lose my English, and get carted off in an ambulance; a sudden inability to lift my left arm above my shoulder due to a compressed nerve (wtf?); blood in my stool (ew); skin erupting with eczema that had me itching like a junky; subtle, pervasive exhaustion; and last but certainly not least - constant, raging, rampant "hay fever" that turned out to be much more sinister than I ever imagined.
Now, the dominant story I've told about myself is that I'm "healthy as a horse". I loved saying to doctors that I'm not on any medication; there was a smug, self-satisfied tone in my voice that I never managed to eradicate until it was snatched away cruelly by another story that was becoming more visible the longer I denied it existed. There was something really, really wrong with me.
There were big clues. I've listed them, above. But even though I'd schedule daily naps, setting my phone alarm 40 minutes ahead so I could curl up on the couch in my office between appointments with a scarf over my head to block the light, I clung to the Myth of Good Health. Despite the development of an obsessive loyalty to one brand of tissue (Kleenex with Aloe Vera -- gentle on the nose but terrible for cleaning glasses) and set a world record for consecutive sneezes in a bottle shop (21) because SNOT RULED MY LIFE, I shrugged it off as hay fever and blamed the leafy North Shore with its conspicuous absence of petrol fumes and aircraft pollution.
Finally, when I started using more tissues at work than my clients and I noticed people backing away from me to avoid shaking my hand, I decided enough was enough and got a referral to an allergy specialist. I explained to him that my American sinuses weren't coping with the profuse North Shore pollen and that I needed the big guns (needles) because mucous production was interfering with my day job. Twelve skin pricks, ten vials of blood, three stool samples, one urine sample, an endoscopy and a colonoscopy later, the good news is that I'm not allergic to anything.
The bad news isn't really that bad. I have this disorder called *big breath* hypogammaglobulinemia, with some Hashimoto's Disease (a thyroid thingie) thrown in for some added international flavour.
This was, as my doctor helpfully pointed out, "a very unexpected result", meaning it's odd that my body has done a big Fuck You and quit producing some of the antibodies necessary to fight infection. No one knows why and there's no cure, but it's not too hard to manage and explains why I've spent years sneezing and blowing my nose. It's likely I've had infections for a long long long time. Gross, right?
But I'm not dying or anything like that, and even though this strange disease may shorten my lifespan (no one's told me that; I'm just being dramatic), now that I'm being treated appropriately with a lifetime supply of blood transfusions, antibiotics, Somac and Thyroxine, I feel better than I've felt in years. The doctors say the transfusions will eventually supplant the antibiotics which doesn't make me happy because I'd heaps rather swallow a daily pill or two than have hundreds of strangers' blood products pumped into my veins every month.
It was pretty confronting learning all this on the eve of my 46th birthday, which has brought with it the awareness that I'll never have another baby and it's likely more than half my life is behind me, but, you know, it could be worse and I'm going to approach this next phase of my life with the heart of an explorer.
PS I've returned home from my first infusion, and I'm pleased to report that it was for the most part unremarkable. The views from the 12th floor of the hospital are stunning, I didn't get sick, and being surrounded by people getting their chemo treatment made me feel chagrined and stupidly self-absorbed. My squeamishness about others' blood products was diminished by a friend who reminded my that "all those people's life blood, the carriers of nutrients and fighters, pledging allegiance to a new body - exciting! - is infused with the generosity, strength and compassion" of the blood donors.
Stardust, she told me. We are stardust.
sorry to hear what crap you have been going through- but so glad that you know what the issue is and you are now able to work toward feeling better! and I'm really glad that it isn't something worse, although I know it still kinda sucks for you to have to go through all that stuff!! Love you!
ReplyDeleteStephanie
xxx - at least you will be able to throw away the tissues now! I know it was bugging you to be so 'allergic'. Thanks for sharing all the details and don't you think the body is a fascinating thing? Have you considered writing for 'House'?
ReplyDelete