53 times an hour x 8 hours a night x 35 years of being alive =
NO WONDER I’M SO DAMN TIRED ALL THE TIME!
53 times an hour x 8 hours a night x 35 years of being alive =
NO WONDER I’M SO DAMN TIRED ALL THE TIME!
Ironically, just as I was in the middle of writing yesterday’s post I got a phone call from the nurse. I was really excited to hear what she had to say, which unfortunately turned out to be: a whole lot of nothing.
After an awful lot of hemming and hawing, she told me that my sample had been located, and it had been analyzed, but no one was allowed to know what the report said.
So apparently I was wrong; my poo was not on the run. It was actually in the witness protection program.
Apparently the secrets it contains are so valuable to some (what was the effect of the drug on my illness) and so dangerous to others (actually, dangerous to the same people, as apparently releasing any information about my sample would unblind the study, thus causing the earth to crash into the sun and bringing the end of life as we know it) that it is being highly guarded in a secure, secret location. And I don’t have a high enough security clearance to have any further contact with it.
Well alrighty then. Now I understand how Sydney Bristow felt when the FBI wouldn’t tell her how they were planning on taking down SD-6.
So I’m two and a half weeks past the end of the kick-ass antibiotics, and I’m happy to say that I am starting to feel like myself again. So much so, in fact, that every day before he goes to work my husband sits me down, looks me in the eye and says,
“Remember. You are still recovering from a serious illness. You are not well. You need to take it easy today.” Otherwise he will come home to discover that I’ve re-shingled the entire roof and added an extra room to the back of our house while he was gone. And I’ll be upset, because I didn’t get around to repaving the driveway as well.
The people in charge of the study still call me once a week as a follow up, and last week I asked them if they had the results from my final stool sample. The nurse said she didn’t have them at that moment, but that she would call me back this week.
So I heard from her on Tuesday, only to learn that, “We’re having some trouble tracking down your sample.”
Apparently my poo is on the lam.
If I had to guess I’d say that it committed an act of violence against Science, and then escaped to some Latin American country which has no extradition treaty with the United States. It is bilingual, after all.
because I spent last night in a sleep lab doing a sleep study. Because when it comes to sleep, mostly I don’t.
This is not anything new-for as long as I can remember, I haven’t been able to sleep. But even though it seems sort of obvious now, it took me all of these 35 years to realize that I could get help for this, so that one day I might eventually reach the astonishing place of actually being able to sleep at night.
So I got scheduled for a sleep study, and the day finally arrived, and yesterday I was so anxious that at any moment I expected to vibrate right out of my skin, plus I had so much trouble taking in air that I was actually panting, BECAUSE OF ALL THE RANDOM STRANGERS WHO WERE GOING TO BE WATCHING ME SLEEP!!
It turned out to be only one random stranger, who was actually a very nice gentleman named Ken. Ken had me and my husband watch a little video on sleep apnea, then my husband left and Ken told me to take some time to relax. Apparently this “down time” was preparation for the fact that I was shortly to take on the appearance of a science experiment gone horribly wrong. I had wires going down under all my clothes to my legs, bands across my chest and stomach, something plastic sticking up my nose and in my mouth, a pulse monitor clipped to my index finger, and electrodes covering just about every square inch of my head.
As a matter of fact, between the sleep study and the clinical trial I was in for the C DIF drug, I’m pretty sure that the only information about my body that hasn’t been documented somewhere for all posterity is the rate at which I accumulate lint in my belly button.
So I thought I was all ready to go, but then it was time for Ken to tell me a bedtime story. It had to do with Reggie White and sleep apnea. I think the point of the story was that if I had a significant weight change in either direction, then I needed to come back in to get my treatment adjusted.
But it’s entirely possible that this was yet another test, because the story pretty much went, Reggie White, got treated for sleep apnea, retired from football, yada yada yada, AND THEN HE DIED OF A MASSIVE HEART ATTACK. As in, “Not only have I made it physically impossible for you to get comfortable, now I will mess with your mind. Let’s see you sleep now, bitch, Mwa ha ha ha ha!!”
Astonishingly, I did actually fall asleep long enough for them to collect the information they needed to determine my treatment. So they sent me home, and I stumbled into the house at 7 this morning only to find that the cats had chosen to express their anguish at my absence by attempting to set a world record through barfing 11 times in the 12 hours I was gone. Plus my head is covered in sticky white electrode adhesive, making me feel like perhaps I accidentally got drunk last night and decided it would be a great idea to style my hair with an entire package of cream cheese.
To quote one of my favorite bloggers, Mighty Maggie,
Today I am feeling every single moment of the three months Iâ€™ve been sick. I think now that the infection is gone and Iâ€™m off the medicine, Iâ€™m settling into my body and just feeling things out; okay, this is what has happened, and this is where I am right now.
Iâ€™ve been taking an inventory: okay, this is how my knees feel; hm, it still hurts to walk and wear shoes; wow, my jaw is tight. Itâ€™s almost like Iâ€™m getting reacquainted with my body. I have to get to know myself again after all that I went through in the fall.
And if I was tuned in before to people and situations that were not a good match for me, now I am super-sensitive in those areas. I know right away if an opportunity or a relationship is not going to work for me, and I literally cannot rest until I take the action Iâ€™m being prodded into by my inner guidance.
Mostly that has meant, once again, learning to be okay with disappointing myself and other people. Iâ€™ve had to rearrange some tutoring clients to better accommodate my needs, rather than fitting myself in around their lives. Iâ€™ve had to let go of being able to manage our entire household, and instead pick just one thing to do, like keeping the kitchen clean. Iâ€™ve had to learn to speak up and say, no thanks-please donâ€™t tell me about the C DIF research youâ€™ve been doing on the Internet, or all the illness horror stories other people are sharing with you, because that makes me feel worse, not better.
Today Iâ€™ve had to learn how to be all right with the fact that I feel bad-Just. â€˜Cuz. Thereâ€™s nothing to investigate, and nothing to blame. In my recovery, today is just a day where I donâ€™t feel good. Today the best I can say is that I was here, and I showed up for this day. And eventually, this day will pass.
in the form of my husband.
Today before he left for work he looked me in the eye and said, “Remember-you are still recovering from a serious illness. You are not well.”
And it was a good thing he reminded me, because I’d already begun to hear the siren song of a little voice in my head that said, “You know, I bet it would be totally fine for me to vacuum the entire house today all by myself.” And I believed it.
What is that-that part of me that has absolutely no connection whatsoever to reality?
I really don’t know.
All I know is, that part of me will not be vacuuming today. Lying on the couch and watching NCIS on DVD is probably a much better option for me.
So I had this big plan to write a whole “2007 In Review” post today. But I’m not, because I don’t feel good.
I’ve treated it pretty lightly here, but the truth is that I’ve actually been really sick for the past three months, and am probably looking at a few months of recovery and recuperation.
Fortunately I was told about this great website called CaringBridge, which is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery.
If you’d like to check out my page, read a little more about my experience with C DIF, or sign my guest book, you can find me here:
Here’s to a happy, healthy 2008 for us all!
Today I had a follow up visit with Science.
This visit went much better than last week’s, because I was able to be seen right away, plus Robert-the-blood-guy knew exactly where to stick me in order to insure the least possible blood-taking drama.
I also met the doctor who is supervising Science.
Good News: He completely believed me when I told him that I’m experiencing reactive arthritis as a result of this illness. (Which was good for him as well, because I had loudly declared to the Universe at large that if one more person said to me, “Hm, I’ve never heard of arthritis happening as a result of C DIF”, I was going to punch them in the face.)
Bad News: When I asked him how long I could expect the arthritis to last he said, “I don’t really know. You’re the first person I’ve ever seen who had it.” (Important Cross-Referencing Note: See also, Being A Trailblazer, And Why Sometimes It Totally Sucks Ass)
Before I could leave I had to let Science take my vitals, a process which really didn’t go very well last time (as you may recall). So we made it through the temperature taking, and the weighing, and then all we had left was the blood pressure reading.
So Science, who is alleged to be a registered nurse, put the cuff on my arm, pumped it so tight I could no longer feel my fingers, and then put the stethoscope…directly over my heart. And stayed there for like, an Entire. Minute. I have no idea what she was listening to-perhaps the dying moans of my poor, deprived cells as they cried out for oxygen.
Finally she realized that something wasn’t quite right.
“Oh, what am I doing?” she asked, laughing giddily.
“I have no idea,” I replied, counting down the seconds until I would be free from the clutches of Science.
And frankly, I think that’s a question you should have asked yourself a long time ago, like perhaps back during the moment in which you were choosing your future career path.
That is really unfortunate, because “they” are the people involved in treating my C DIF. Not my doctor-him, I love. But because this illness is becoming more and more of a problem, and because the medicine required for its treatment is apparently handcrafted by tiny elves who live in remote workshops in a distant land and spend all their days grinding down rare nuggets of 24-caret gold into a fine powder, carefully placing the powder into fragile, jewel-encrusted capsules, and then glazing the capsules with the wings of the silver faeries who reside in the blossoms of a flower that only blooms at the stroke of midnight on the top of the tallest mountain when the light of the moon falls gracefully across its petals, causing each individual pill to cost somewhere in the neighborhood of 850 frajillion dollars, my doctor suggested that I allow Science to step in and lend a hand.
So for the next ten days I’ll be filling out excessively detailed reports documenting every, minute bodily occurrence (as in, “Lost 5 eyelashes on upper left side at 10:39 am Saturday morning in freak gift wrapping accident”), and in exchange for all this scintillating personal data, Science is covering the cost of my treatment.
But as grateful as I am for the medicine, I must admit that I have really not been all that impressed by Science.
For example, on Wednesday I arrived at Science’s office, where I was told that I would have to complete a number of tests, undergo a short physical, and provide data on the history of my illness. Part of this data involved the taking of my vitals, which Science knew in advance that it was going to have to do. But apparently neither Science, nor anyone else in Science’s office, possessed a thermometer. So Science was forced to send its nurse (who incidentally, is also Science’s real-life daughter), to the drug store to purchase one.
Once Science was finally in possession of the necessary medical instrument, it tried valiantly to affix a protective plastic cover over the end of the thermometer before placing it in my mouth. But no matter what it tried to do, it wouldn’t fit. So Science was forced to call on the aid of her daughter, who took one look at the situation and said, “Mom, you have to take the cover of the thermometer off first, before you put the plastic part on.”
I very nearly gave up on Science at this point, but unfortunately I was too sick and tired to be able to make my escape.
Science also needed to collect some of my blood, so next we paid a visit on Robert, the guy who collects all the blood. It did not go well.
Science then informed me that I would have to return in three hours, once I’d taken my first dose of the medicine, in order for Robert to collect even more blood.
I then turned to Science, looked her dead in the eye, and said, “This medicine had Better. Fucking. Work.” And Science had no idea what to say to that, because Science is clearly used to spending all of its time with numbers, graphs, and various bodily fluids, rather than desperate, half-crazed women who have been sick for the past three months and might, at any minute, decide to rip your face right off your head and make you eat it just so they can find a little relief.
But I F-I-N-A-L-L-Y got my medicine. And the second trip to Robert was a little easier. And I have been faithfully filling out my worksheets (“At 5:04 am, right buttock began twitching uncontrollably in time to the song, “Ice, Ice, Baby”).
And even though Science did give me a little check to cover my traveling expenses, right now?
My feeling is pretty much that Science can just go ahead and suck it.
So as I mentioned yesterday, I finally escaped Excessively Loud Jolly Man and made it in to see my doctor. He, I, his medical assistant, we were all pretty sure that yep, I still/once again have C DIF, and that it’s time to move up to the seriously bad-ass medicine for this round of treatment.
Only he wouldn’t give me a prescription for said medicine until he got back the results of my stool sample. Which was fine, except that they wouldn’t take my sack of poo! They told me I had to drive it over to the hospital and find someone over there to take it.
So I did, even though it was extremely odd to basically be chauffeuring my poo all around the greater Atlanta area.
I parked, and for the sake of this story, let’s say that my parking lot was in northern Georgia. And then I had to walk all the way over to the front desk which, metaphorically speaking, was all the way over in southern South Carolina. There I once again had the privilege of informing a complete stranger that, Hi, I’m carrying around a sack full of my own poo, looking for someone who will pretty pretty please take it off of my hands.
At which point the receptionist looked at me, looked at my bag, and said, “Well okay, but first you’re gonna have to go and take it to get registered.”
Me: (as in, I have to register it so that it can go off to an educational summer camp and then get into a really good school with all the other stool samples?)
So I trudged on over to, say, central South Carolina and explained my situation to yet another random stranger in hopes that maybe she would finally give my poo a loving home.
But no, they wouldn’t take it in there, so they called the courtesy (golf) car(t) to come and take me back over to northern Georgia, which is where I started out in the first place.
Finally, almost an hour later, I found the correct lab where I was met at the reception desk with…stunned outrage and indignant disbelief that, of all things, I brought a stool sample! To a lab! A stool sample on which I had the audacity to expect them to perform laboratory tests, if you can even believe the nerve of me.
I had well and truly had it by this time, and was one dirty look away from responding, “Look, lady-I wasn’t the one who decided to go into a job where you have to deal with other people’s poo on a daily basis. It’s not my fault.”
So she was a real bitch, which is really not what you need after suffering with hostile alien bacteria for over 2 months, but in the end she took my stuff, and they did the test, and it came back positive, which meant I could finally start treatment.
I’ll save that story for tomorrow, because it I don’t really have the energy right now to write about how I almost had to rip someone’s face right off and make them eat it. That’s a story for another day.