Category: daily update

Gourmet Fish Oil?

My naturopath has me taking fish oil for depression and joint pain. I had been taking the gelitin encased ones. But my naturopath says you don’t get. Much out of those and he has me on the real thing. One tablespoon straight from the bottle.

It isn’t as bad as I thought. It is a little fishy which is covered by the lemon flavor. I’ve actually kind of acquired a taste for it. In fact I want it to be more subtly infused with thyme. Or maybe rosemary. I think that freshly lemoned fish oil could be a hit in the kinds of restaurants that serve wheatgrass. I’m joking but I’m also serious. San Francisco, I’m looking at you. Let’s see some gourmet mercurey free omega-3s!

inspiring inspiration

We had dinner last night at BH and JW’s. The food was wonderful. They played some great music we had never heard of before. We caught the 1990 hiphop references that are generationally specific.

As we were leaving BH said something to me like “you are my motivation. Whenever I feel overwhelmed or like I have so much on my plate and I think about how much you are going through and how productive you remain.” it was really touching. And affirming.

As per usual I defer much of the credit to my team of  two to three assistants. Without them I would not be able to handle this.

Sharps

spentdrugs02

spentdrugs01

Somehow I was never given a sharps container. So I have carefully collected my spent needles, and syringes with the intent of taking them to my doctor for disposal. I did actually take them to my doctor, but I get so tense when I’m there I forget to ask a lot of questions, and do things like dispose of my sharps.

Can’t Sleep

Its late, i’m up.  Tossing and turning in bed.

I was thinking about the blog.  I was thinking about being done with treatment. I was thinking about how I will have to transition to a new state of not-quite-healthy-forever.  All my lesions will go away.  All my dysesthesia will be under control.  I’ll have a rough time coming down off of my Klonopin, and I’ll get my sex drive back.  But I will still be living with a 15 to 30 percent ‘rate of re-ocurrance.’

I don’t want to do this again.

Depending on how you count, next week is halfway through the 12 month treatment, or two weeks later is halfway through the 48 week self-injection sequence.

And the end of February is the one year mark since I was diagnosed.

I don’t want to do this again.

I Made Dinner

Mushrooms and Ravioli

I made dinner, after I got home, when I was tired. I didn’t order out. I didn’t get something from the deli counter at the fancy place near the subway. Okay, the ravioli were from the freezer, but I cooked them. And I cooked the mushrooms. And it all came out nicely.

I was feeling really low-energy when i got home, but I kept my focus, and went through the motions. And ended up with FOOD!

Amazing

i got a hair cut too

feenix

This is Feenix getting a haircut. One of my parents two dogs.

i got haircut too

my hair kept falling out.  and getting thinner and thinner.  and loosing body.

six months ago i started out with about two inches of pony tail that was a bit over 1 inch thick.  before this hair cut (six months later) i had about 2.5 inches of pony tail that started out at 1/2 inch, in withered to strands by the end.  normally, after 6 months, i would have a big bushy bunny tail back there, with four inches curling back on itself in a pom-pom bun.

today marisa noticed that i have half as much armpit hair as i did before.  or maybe less.  we couldn’t decide whether my chest or other body hair had dropped too.  i did notice a funny hairless patch on my belly, right near one of my early favorite sites of injection, which i have since had to abandon because it turned red (and still is red), and got scaly for a while.

Losing My Hair?

hair

Interferon is not supposed to cause your hair to fall out the way that conventional Chemo does. The traditional chemo patient story is that one day, after the second or third treatment, all their hair on their entire body falls off in one day.

I had relatively little hair loss up until month two or three, when I started to notice excessive amounts of hair in the drain… *when I didn’t wash my hair!*

I also notice that if i undo a hair band, there is maybe 5x the amount of hair that would normally be there.

And I have noticed I can see my scalp. My hair is *thinning* which is what IFN is known to do.

I told my dad, and he jokingly reminded me that this was about when he started to go bald. But we have different mother’s fathers, and my mother’s father didn’t go bald (to my knowledge), so I have hope.

Atarax Update: New Side Effects

Nothing is easy, and there is no free lunch with this stuff.

The Atarax (which I am taking at a lower dose, with greater frequency), *is* helping with the Dysesthesia attacks. Before I would get at least one attack that was at least a level 7 or 8 on a scale of 1 to 10, and several attacks in the 2 to 5 range. The drugs have pulled that top threshold down to a once a day level 4 or maybe level 5 attack, with several attacks that are in the 1-3 range. These smaller attacks I can manage with breathing, self-hypnosis, and temperature (ice and just walking outside.)

So… the side effects. I’m irritable, I’m having nightmares, and I have completely lost my libido. Like “whoosh” gone. It took me a sec to realize that is what had happened. But yes, that is what had happened. You win some, you loose some.

I told my therapist about it, and she said that she was frankly amazed that I managed to continue to have sex through this whole thing at all. Her comment was that between the hormonal shifts, and the physical falling apart, someone not as strong or vital or depression resistant would not have even made it this far.

Shattered Bowl

brokenbowl

rubberglove

My hands are so beat up with lesions and cuts, and my skin is so thin and dry, I decided to use gloves to wash the dishes. It seemed prudent and responsible.

The first dish flew out of my hands, and crashed all over the floor. It was one of the big cereal bowls from my set. The set I grew up with. I had to concentrate really hard to think "it is just an object. do not let this make you fall apart. do not cry."

This is the second time today I had to do that. I had the same feeling, and response when I cut my finger, right under the fingernail, on the edge of a cardboard box. Cardboard cuts me! That’s how thin my skin is.