Just as I lay down to sleep, the nausea hits. It's been every night for a couple weeks, and I'm starting to wonder if it's totally in my crazy head. Why only at night?
Without fail, I lay down to relax, and the shivers start. Followed by upset stomach, and that feeling of waiting to vomit. I remember when I was pregnant, and I would lay as still as I could, and wait for the wave of nausea to pass...this is the same feeling, only it doesn't really pass. Some nights I fall asleep and it vanishes. Other nights, I wake up in the wee hours and after assessing the chances of puking, make the walk to the kitchen to take a Benadryl and Prednisone. I'm not sold that these do anything, but the antihistamine knocks me out, and well, the Prednisone gives me a bloated feeling and a headache? Not sure that's a good thing...
In defense of these meds, I have yet to visit the UCLA trial. I hope I don't see those people for a long time...not that I don't like them, but if I'm seeing them, it means I'm sick. So, I'd rather skip it. I told them not to take it personally.
Morning comes, and I feel exhausted...better, just tired. This bloody weather is NOT helping, but hopefully this bag of Sun Chips and Vitamin Water will. Don't judge me, sometimes a girl just needs a bag of chips for breakfast. Don't tell my acupuncturist.
Thursday, August 20, 2009
Friday, August 14, 2009
Welcome to the Study
Got the call--accepted to the UCLA study! With this comes great piece of mind that when I have a brutal attack, I can page them and get the treatment I need...
What's that? Oh, the clinic is closed for a week? No problem. I'll do my best to stay well until then.
Like I said, piece of mind. Well, starting next week, I guess. Gotta love budget cuts.
What's that? Oh, the clinic is closed for a week? No problem. I'll do my best to stay well until then.
Like I said, piece of mind. Well, starting next week, I guess. Gotta love budget cuts.
Monday, August 10, 2009
UCLA Clinical Trial
The morning of meeting the clinical trial team at UCLA had finally arrived. More than anything, I was excited to meet the fancy Dr. Riedl--a man who actually knows all about this disease, and can answer questions with more than, "wow, I wish I had actually heard of this..."
As I pull up to the gorgeous Ronald Reagan wing of UCLA medical center, I am amazed at how I feel like I'm visiting the Getty--it's no wonder this is where Michael Jackson was, it's right up his alley. The valet parking dude takes my car, and is very friendly. Yes, that's right, valet parking (and the best part is, the trial covers it).
Once upstairs, I approach the nurses station, and they know who I am. A very friendly nurse named Robert takes me into a room and makes me very comfortable. "Are you in any pain? Do you need anything?" I said no, then realized I should have asked what my options were first. Luckily on this day, I was feeling pretty good, so I just drank my decaf coffee.
As I sat in my posh hotel suite I almost felt guilty. I kept thinking about people in other countries, even in our country, who are not fortunate enough to have access to such amazing care. I felt very secure, I must admit, and thankful.
For the next two hours I was able to talk to the doctor, get all the details of the trial, ask a million questions, and fill out tons of paperwork. I was feeling more and more comfortable with the idea of this whole thing. Less of a lab rat, more of a lucky sucker to live in LA. Dr. Riedl was comforting, nice, professional, and honest. I kept finding myself wondering what he's like when he's not at work--does he ride a Harley and bungee jump from high rises? Or does he have a lovely, immaculate home in Malibu with little dogs and a flat screen TV that he watches the food network on? I have always enjoyed making up backstories for people, I think it's fun, and more often than not, I am totally wrong. I even like that part of it.
After the doctor leaves, my Robert the nurse takes boat loads of blood from me, and gives me an EKG. "Your heartrate is slow, have you been told this before?" Uh, no. "It's normal for people who work out a lot, but I assume with two kids you don't do much of that..." Are you saying I'm chubby, Robert? I thought I liked you..."you know what I mean," he clarifies. Uh huh. So I tell him that I DO exercise, and he asks where and I tell him and he says he works out there too...turns out his partner takes the same spinning classes I do! Small world. Suddenly we are pals and I'm not the fat, sick mommy chick he's offering pain meds to. Funny, even through all this, all I want to know is where he bought his watch. It's crazy cute. I also try to talk him into being my nurse friend who will come over to my house and do these infusions for me so I don't have to do them for myself. He laughs, says I'm funny. I don't think he realizes that I'm half serious.
Now I wait. Wait for results, wait to be accepted, wait for the next attack. I'm trying to find my zen pants about the whole thing, but it's still hard. I know it will get easier, and every time I freak out I have to remind myself how fraggin' lucky I am to have access to this and so much more...life is good. I honestly believe that. Now if I can just find that watch online...
As I pull up to the gorgeous Ronald Reagan wing of UCLA medical center, I am amazed at how I feel like I'm visiting the Getty--it's no wonder this is where Michael Jackson was, it's right up his alley. The valet parking dude takes my car, and is very friendly. Yes, that's right, valet parking (and the best part is, the trial covers it).
Once upstairs, I approach the nurses station, and they know who I am. A very friendly nurse named Robert takes me into a room and makes me very comfortable. "Are you in any pain? Do you need anything?" I said no, then realized I should have asked what my options were first. Luckily on this day, I was feeling pretty good, so I just drank my decaf coffee.
As I sat in my posh hotel suite I almost felt guilty. I kept thinking about people in other countries, even in our country, who are not fortunate enough to have access to such amazing care. I felt very secure, I must admit, and thankful.
For the next two hours I was able to talk to the doctor, get all the details of the trial, ask a million questions, and fill out tons of paperwork. I was feeling more and more comfortable with the idea of this whole thing. Less of a lab rat, more of a lucky sucker to live in LA. Dr. Riedl was comforting, nice, professional, and honest. I kept finding myself wondering what he's like when he's not at work--does he ride a Harley and bungee jump from high rises? Or does he have a lovely, immaculate home in Malibu with little dogs and a flat screen TV that he watches the food network on? I have always enjoyed making up backstories for people, I think it's fun, and more often than not, I am totally wrong. I even like that part of it.
After the doctor leaves, my Robert the nurse takes boat loads of blood from me, and gives me an EKG. "Your heartrate is slow, have you been told this before?" Uh, no. "It's normal for people who work out a lot, but I assume with two kids you don't do much of that..." Are you saying I'm chubby, Robert? I thought I liked you..."you know what I mean," he clarifies. Uh huh. So I tell him that I DO exercise, and he asks where and I tell him and he says he works out there too...turns out his partner takes the same spinning classes I do! Small world. Suddenly we are pals and I'm not the fat, sick mommy chick he's offering pain meds to. Funny, even through all this, all I want to know is where he bought his watch. It's crazy cute. I also try to talk him into being my nurse friend who will come over to my house and do these infusions for me so I don't have to do them for myself. He laughs, says I'm funny. I don't think he realizes that I'm half serious.
Now I wait. Wait for results, wait to be accepted, wait for the next attack. I'm trying to find my zen pants about the whole thing, but it's still hard. I know it will get easier, and every time I freak out I have to remind myself how fraggin' lucky I am to have access to this and so much more...life is good. I honestly believe that. Now if I can just find that watch online...
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