Back in June 2007, I spent some time in ICU on a ventilator. It was a pretty horrible experience. The beginning of January of this year I went into the hospital for some tests and ended up on the ventilator in ICU again. I hated it. I hated the drugs and the isolation. But, the tests came back and I don't have wegeners... So that is good. I should be back at work very soon, which makes me happy.

Long Time

Apparently I am pretty confident in my memory...to the point where I don't think I need to write anything down these days.

You are gone, and I miss you.

There are birds in the courtyard, some in cages, some wondering on the grass. It is sunny and cool. There is a small Italian cafe on the corner- so out of place, and yet so memorable. This small part of town is an oasis in a dirty, filth- ridden city.

5 Year Old Ninjas

Apparently the age of 5 is one where kids love to push the sanity buttons of those in charge of them. My boys have it down to a science, which is odd considering they still cannot manage button-up jeans. And yet they are the ninjas of driving me crazy.

It is a holiday for the boys, which means they are home all day, which in turn means I am on boy duty. I also have a doctor's appointment at 1:00. They have to come with me. I expect them to melt down on the way there, while there, and also on the way home. I figure if I expect the worst, I won't be disappointed.

Pictures

Me - with new hair. By the way - this wig HURTS to wear. It fits better than the other one, but gives me a flipping headache. Won't be wearing it all the time is all I am sayin'

I guess Todd took this last night with my phone when Roark and I fell asleep. I found it on there this morning. Cute.

Hair No More

I wear a lot of hats now. I have a wig too - but I am having trouble getting used to it. It seems so...bushy. I prefer the bald head I think. The only reason for the wigs is to avoid staring strangers and business meeting freak-outs. My husband thinks formal presentations require hair. At least he thinks it will make people less uncomfortable. I suppose he has a point...however I tend to think "screw all people" so it is hard for me to cave to that. Regardless I have decided to wear 'hair' for meetings. Am weak and self conscious. I am also drawing eyebrows on my face. So stupid...so very stupid.

The boys are great:

Todd is great (and my wig looks better on him than me:

And the girls will be home for Christmas soon:

SLE

I was diagnosed with SLE Lupus a while back. It was a suspected diagnosis for years, although anyone with Lupus will tell you that an official diagnosis takes a long time to get. I have no idea why... I think it has to do with sunspots or alien life on earth. Just my guess...

I have been on high doses of prednisone along with a cocktail of other drugs for the past 4 months to combat all of the havoc SLE throws at my body. The goal has always been to reduce the prednisone or stop it completely, letting the other drugs control things. However that wasn't happening with me, and apparently long term prednisone at those doses is not very easy on the body. So the recommendation was to begin chemo - medium dosage, long term. Many different drugs were discussed, however my doctor decided to start with Methotrexate. I will be taking it weekly - forever, or until we find something better / with less side effects, that works for me.

I am thankful that there are options for treatment, unlike 50 years ago - however I am not thrilled with THIS treatment option. I started taking it during the week (Tuesday) and quickly learned that weekday dosing is not a good option for me. I spend at least a day or two sick, sick, sick, followed by a day or two of being so tired I cannot get enough sleep. This is followed by a day or two of normalcy - and then, back to chemo again. I did the second round of chemo on Friday, and felt ok all evening. Saturday was a mess. Sunday was better. Monday and Tuesday were DRAINING. Today I feel human again. This Friday I have to take it again. I hope this gets easier. The doctor added compazine for this round - which is supposed to help with the nausea. Although, initial research lists nausea and vomiting as a side effect of compazine - I have my doubts about its usefulness.

I am very lucky that what I have is treatable, that I am not facing a death sentence. I am glad that there are medicines available to treat SLE, and that I was able to get a diagnosis before my body was worn out and unable to recover. I am thankful for good doctors that know how to treat this disease, and I am so so grateful for my family and friends for being supportive while I whine and complain about the insignificant things going on with me. I promise to keep the whining down to a soft drone.

So - what does this mean in terms of me, what I do, how I live, etc? Apparently it doesn't really affect it much. I am still working full time, I am slacking at home, but luckily Todd is tolerant of my lack of energy and has been picking up the slack. I don't think I can take advantage of that forever though. I drink a little (although the medication doesn't really support that), and am starting to run again, although exercise has been difficult the past few weeks. I feel flabby and need to at least pick yoga back up again to have some sense of well being. I would ideally like to continue running and maybe get back into swimming - but finding the time is HARD. We are trying to eat well and keep life low maintenance, which is perfect for me. My biggest worry is work...how to spend the time needed on it to be successful without sacrificing my health and sanity. But - this is an issue we ALL face, isn't it?

The Locker Room

I work with a group of frat house boys. Not literally, but certainly figuratively. Every conversation is speckled with expletives and raunchy stories of days gone by. There is an abundance of booze and drunkenness and unbelievably uncomfortable conversations in the evenings. There seem to be no boundaries when they are together. But, it is different for me. I am criticized for either being too engaged, or not engaged enough. It is perplexing.

I spent a few days out of town recently at a team meeting, and ended up sick, as happens when you have no immune system. I didn’t want to go out and play the last two nights and was criticized immensely for it. “Be a team player” “Your co-workers feel like you are distant” “The team dinners and off-time are critical to forge a bond that is needed in this job” and yet told “Be careful what you say” “Don’t get too personal with your co-workers” “keep your distance”. I don’t know what to do with this advice except laugh and call it a double standard, and little bit of bullshit.

This company is male abundant. Most technology companies are. This isn’t surprising. What is surprising is that this is one of the few times I feel a different set of rules apply because I am a woman and not a man. It makes me feel vulnerable and lacking control – something I have tried very much to avoid in my career.

Admittedly I do not currently have much of a filter when it comes to sharing. I tend to just be me. It is uncomfortable for some people, and I suppose I “get” that. But I do understand politics and business how to behave around customers.

What escapes me is a solution. I can get very good at what I do so that the other stuff doesn’t matter, grow some tougher skin, keep my mouth shut, or move on. Money is such a little whore though – and I really like having it so moving on isn’t all that appealing. That makes other fun options less intriguing (like becoming a writer or construction worker).

Sleepless Nights

I lie awake in bed, waiting for the cellophane haze of the Ambien to surround me. I notice that I am always tense; my shoulders, back, neck, hands. My attempts to relax are useless, as if my mind and body have no real connection. I remember a period of time when my brother and I were much, much younger and he was faced with sleeping issues. He would try tensing every muscle and then relaxing them each one by one, trying to teach his body to relax. I have tried this. I have tried meditation. I have tried baths, candlelight, exercise, chamomile tea, reading, television, sticking to a schedule, complete silence and darkness, wine, Benadryl, Trazadone, Tylenol PM, Unisom, ditching all caffeine. And yet, sleep eludes me.

The rare times I am able to fall asleep unaided by medical intervention, I am awake after only a few hours as if I have been asleep all night. This of course leads to three o’clock death march later that afternoon. I am constantly thinking about how to get more sleep. I Google insomnia and read about how it is all psychological, all the while wishing my head were screwed on right. The same advice is everywhere – follow a schedule, get up if you cannot sleep, try not to worry about things before bed, keep a journal, do not drink alcohol or caffeine, get exercise and eat well, stop worrying about not sleeping because it won’t kill you – unless it does.