Friday, May 27, 2011

Anemia...My Other New Best Friend

Right before this week's Phlebotomy #3, I checked out my labs from each pre-phlebotomy blood test and what I saw was a trend towards anemia. For some reason, I thought each time my blood was drawn, that my body would just automatically make new 'hematocrit' and that it was super simple.

But, apparently, it's not that simple. The body maybe doesn't recognize that it needs to make new 'hematocrit' until it runs low, kind of like an alarm in your car when you're about to run out of gas. Which basically means you reach a state of 'mild anemia' in order to trigger that response in your body. Which also means that for the time of my initial phlebotomy routine, this is the state my body will be in. I admit I felt a bit deflated after my doctor called me later to explain that.

But I'm working 'with it'. I'm drinking lots of Pedialyte and taking my vitamins, talking with my doctor about running my B levels and possibly getting a Vitamin B shot if they are too low.

Monday, May 23, 2011

In the Immortal Words of the Beatles...Hello, Goodbye...

I say high, you say low 
You say why, and I say I don't know 
Oh, no 
You say goodbye and I say hello
[excerpt from Hello Goodbye by the Beatles]

Growing up I listened endlessly to an old BASF tape cassette recording of the Beatles. It was my first experience as a teenager connecting to the darker parts of my life. 'Blackbird singing in the dead of night...take these broken wings and learn to fly,' filled the corners of my room as it did the corners of my adolescent angst. I do believe the Beatles were the original 'teen spirit'. And once again, twenty years later, I glean from them the understanding I need to look at my biggest hindrance: detachment-attachment.

In meditation last night, the Dharma teacher shared a story about a realization she had one day when everything she looked at, she appreciated more because she realized that as she said 'hello' she would at some point (sooner or later) say 'goodbye'. She didn't mean that one just lets go of enjoyment or love or people or jobs. This concept is not about giving up all one's worldly possessions or pleasures. Indeed detachment is often the other side of the coin of attachment, only reinforcing the concept of clinging. Instead, it is about embracing the moments and watching them wax and wane without pushing away or holding on so tightly. For loving unconditionally. With faith.

Fundamentally, I get change. I'm a huge proponent of change. I grew up in 7 different homes, 6 different schools. Being in the tech industry, I have also had the fortune to change jobs frequently and get a wide range of experiences. I almost know nothing else.

But now, I have had to welcome Hemochromatosis into my life. It's all very good to be so 'tongue in cheek'. It is hard to articulate what a 'sea change' this kind of health issue has had on me in the span of a few short paragraphs.  When I heard the meditation leader's story, I thought I recognized that in me that which has always and even more strongly sees everything around me as 'hello'. I also thought I recognized an ability to say 'goodbye'. But then as I reflected on it, because I've seen and felt a lot of loss in my life, I believe I greet every person and experience as 'goodbye, hello'. I'm pretty sure that is missing the point. I'm pretty sure that I say 'goodbye' to many experiences I never then have a chance to say 'hello' to.

That realization brought to mind a boyfriend who spoke to me about 'trust'. At the time, I believe he was a little frustrated with me but he meant well. I didn't really understand it. I thought I was being so nonchalant. I thought my little questions were casual. But I often have a 'piglet' (from Winnie the Pooh) complex and don't expect others to pick up on my innermost feelings. But some people can really surprise you with their ability to notice you.  And I have this underlying issue that I wasn't even aware of. I really appreciate that someone took the time to point it out to me, as later when I started to really understand what trust means for me, that seed he planted grew into understanding.

The order of my 'goodbye, hello' is something I am going to keep reflecting on and noticing in my life. I hope I can reverse it to 'hello, goodbye'.

Wednesday, May 18, 2011

Weird Artsy Girl on the Loose or Did You Ever Want To BE a Lilac??

I remember loving lilacs so much that I wanted to BE a lilac, that way I could never forget the beauty of it. The small, the tiny perfectly shaped flowerettes. The perfect bunches I could just squeeze in the palm of my hand. The heady scent as it filled my room. In college, one night I was inspired to, in the cover of darkness, go pilfering lilacs all over campus. I filled my dorm room with dozens of branches of lilacs all in plastic cups of water. When I love something, I tend to be very intense about it. I have some problems 'letting go' but I'm working on that.

I have a huge appreciation for living - my mother was only in labor for me for an hour or something insanely short like that. The family story is that I couldn't wait to get out into the world. In my early twenties, my whole family saw my father grow sick and disabled. And my family fell apart too. I felt like I had lost everything. And again, in my early thirties, I watched as 3000 people died in my subway stop at the World Trade Center in New York City. Each time, I determined to grab on to life and never let it go. The only problem with that is, it's not possible.

I understand why I did it. The reason, to appreciate life, this is not a bad aim. It's a good intent. But it's not realistic.

Living with something like Hemochromatosis (at least at this early stage) is teaching me about the tiniest ways in which something is impermanent. The sunshine I see out the window of the Google shuttle right now as I write this. The meal I just ate. Even the plastic bottle, whose permanence I fear more than desire. All these things wax and wane. Things are born and then they die. Thank goodness the poufy hairstyles of the 80s died.

 I'm grateful now when I wake up in the morning, when I get to exercise, when I brush my teeth. I'm grateful when I talk to people that dislike me. It's the oddest thing. The things that used to depress or bother me, either don't anymore or they are things that I now pause and give much more consideration to. I weigh every potential 'upset' against my new barometer: 'Is this more important than life or death?' 

Hardly anything causes me to answer 'yes' and, therefore, instead of reacting, I must wait, observe and trust.

Monday, May 16, 2011


Don't you just love how
the nurses matched my
shirt - and without me
even asking!
Sookie: Wow. I feel a little weak.
Bill: Of course you do. I fed on your blood. You should take some vitamin B-12 to replenish.
Sookie: Will I need to do that everyday?
Bill: If you don't mind, yes. And no garlic

My 2nd phlebotomy is done and over with, and I was down for the count.  I did a poor job of hydrating. Or, rather, I didn't know how much I should hydrate beforehand. Apparently, ALOT more than I did. I almost passed at about the halfway mark. But the nurses are trained to look for that and swiftly raised my feet and brought me apple juice. I drank 4 bottles during and after. I continued to be thirsty for three days. And tired. And so dizzy I felt like I was walking on one of those moving sidewalks. And cold.

Aside from drinking alot of water, taking a B Complex, Vitamin D, electrolytes and eating some decent meals, I also used my heater at night and bundled up more than usual. I've been wearing hats and gloves and scarves over the past week as well. I know, I know...I live in San Francisco - I should be used to that already. But let's just say that if I was a little chilly before, post-phlebotomy is more like a winter on the East Coast. 

I have gotten some good tips since then that I'm going to try on my next phlebotomy (next week). I was advised to do a couple things (before and afterwards) to raise my blood pressure. For those of you who know that eating salt is 'bad' well in this case it's beneficial. It will not only increase the pressure in my circulatory system, but it will also make me thirstier resulting in increased water intake which also will increase the pressure. In addition, drinking a more hard core electrolyte fluid like Pedialyte will also increase by blood pressure by increasing blood fluid volume as well as salt which should raise the pressure.

Apparently this will have two very important affects on me: 1) the blood will flow faster during my phlebotomy, making it quicker and 2) my blood pressure should be higher and therefore more stable once the pint is removed.  The results should be that I won't feel like I'm looking at myself in a fun house mirror or taking a spin on the lastest roller coaster. Hopefully. Anyways, I'll give it a try and report back.

Don't forget your B-Complex...essential for making new blood! ;)

Friday, May 6, 2011

Meditating on a Raisin

Last night in meditation class, we did an exercise where we each took a raisin and held it in our fingers. We rolled it around, feeling its skin and looking at it. Have you ever looked at a raisin for a full minute? There's a lot more to see than you'd think. And when we held it up to our ears to listen to it, to hear the crinkling of the skin as I rolled it in between my thumb and forefinger? I felt a giggle rise right up inside me.

What is the point of a meditation on a raisin? And what does it have to do with Hemochromatosis??

In the realm of emotions, there are 'tones' if you will. They are not unlike tones in music or color theory. Very broadly, these tones are divided into three groups: pleasing, displeasing and neutral. The exercise is created to familiarize ourselves with noticing each of those three types of emotions.

Most people at this point ask 'Why do I need help noticing those? I notice them plenty! When I get on the train and someone won't make room for me, when someone talks on their cell phone in a rude!' and so the story goes...

But this is a little more nuanced than that. What we're asked to do is not just notice the feeling but to stay with the feeling. Most of the times we have a feeling and the next thought is the judgement or the reaction to that feeling. We hear a man on a cell phone in a cafe and we think 'he's so selfish'. Feeling, thought. Feeling, thought. Feeling, thought. It's so natural. Like breathing. Automatic.

Staying with the feeling allows for me to fully experience it and to notice, just observe the range of reactive thoughts I have as a consequence. And to choose which of the reactions I want to take on.

So my experience with the raisin was one that I'm sure is not the norm: terror. Having been newly diagnosed with Hemochromatosis, I am in a state of panic about everything I put into my mouth. I'm afraid of iron and yet iron is in everything.

I'm learning slowly, day by day that I should be able to eat meat by pairing it with things that prevent absorption, like calcium supplements or cheese, tannins, something called phytates, etc. But that knowledge is not tacit yet and my body is still freaking out when I eat or think about eating. So that raisin terrified me.

What was great is that I could see my judgements about the raisin as good or bad for me and could start to question it. I realized that I had no idea how much iron was in a raisin or a handful of them. In the course of writing this blog, I found that raisins are choc full of iron...4% of the RDA allowance for a small box of them, ie a couple handfuls. Who knows what 4% really means for me because the RDA probably sets the required daily allowance for a normal person without hemochromatosis pretty high. The FDA and the medical community love them some iron. We won't get into that now, but I'm learning a lot about how misunderstood iron is in our society.

This is an extreme example right? I can't very well go around refusing to eat. And I can't very well stop eating things with iron altogether as there are other nutrients I'd end up missing out on. But what I can do is pair those foods with other foods that prevent the iron from being absorbed. I'm a little concerned those blockers might prevent other nutrients from being absorbed, but I'll learn more about that.

And what are my choices? Not eat? Eat without any discernment and end up having more frequent phlebotomies? Those are my choices.

Tuesday, May 3, 2011

Coffee is my new BFF!

Does anyone have any good coffee resources? Or black tea resources? I'd like to learn more about coffee and tea, especially good decaf coffee brews. I have never been a coffee drinker my entire life...I mean, my *entire* life.

Yay for all the tannins in coffees and black teas that will block some of the iron from getting absorbed into my system. Who knew?

Where's a girl to start? 

Monday, May 2, 2011

There go my dreams of being a marine biologist...

One of the off the wall things about this disease is that there is a virus called  V. vulnificus. that thrives on Iron and it means that I can't eat raw shellfish if I don't want to get terribly sick and possibly die from it. I might not be able to eat raw seafood period. And I'd have to be careful cooking fish at home. My question is will I be able to eat it when my iron is low again, after my phlebotomies? I'm not sure.

But needless to say, I've been putting the bullet in the gun for years on that one, with all my sea kayaking and seashell collecting. I even touched all those sea slugs that washed up on Surfrider beach in Malibu, not to mention the touch tank at the Seymour Center that I volunteered at for a summer. I've been pretty lucky I think and I have always been good though about washing my hands. 

I spent almost the entire weekend near or on the water. Saturday I went to the Marine Mammal center out in the Headlands here in San Francisco and watched some scientists doing necropsies. There was a whiteboard nearby where they had written down the suspected ailments of two sea lions and one elephant seal. Life for all animals is just so temporary and fleeting. I'm just glad that there are scientists who are curious and want to do good for the world.

I have often thought if I were to change my career, I'd go into Marine Biology. I absolutely love the ocean. I've SCUBA dived off Santa Barbara Island, wandered the beaches and kayaked the waters off every coast I find myself at. I just hope that I won't always have to avoid the ocean. But it's a possibility.