I swear, I think I'm gaining about 2 pounds a day.
Joacim got me a beautiful dress from one of my favorite stores, Athleta, for Christmas, but my water baby makes it looks much less nice on me.
The cravings are powerful, but I've been stuffing myself with HEALTHY stuff, like peppers and cucumbers and strawberries. How on earth can I not be peeing out all of this water?
Dammit.
I miss being healthy. I miss being pretty. I miss being athletic. I miss a lot....
In 2 days, the two things I love the most are going to fly to another county and leave me here. This is the first time in 4 1/2 years that I've been by myself this long....4 1/2 YEARS!!! It's awesome, and yet freaking me out. I know me and my tendencies....my brain will be thinking "better take advantage of all of this uninterrupted time and get something productive accomplished", while my body will be thinking, "YAHOOOOOOOOO.....SILENCE!!!".
I'm trying not to make a list of all of the things I could do on my "vacation", but it's hard not to. I DO hope to give myself a little challenge though. I'd like to do yoga or pilates every day that they are gone. I have no excuse (unless I'm sick) while they're gone, and time is on my side, but getting started is always the hardest part, right?
Saturday, January 5, 2013
Thursday, January 3, 2013
Update on latest clinical trial : FSGS Sucks
Do you have any idea how hard it is to keep everything straight in regards to my health care. I mean, I'm amazed that I'm able to do it as well as I am (which isn't all that great lately).
I just got a call from Mayo for the latest clinical trial that I'll be participating in. Seems like I'll be going on February 21 in order to do a follow-up for the FONT study (which is the 5-year study that I had to back out of due to abnormal pap results), as well as get consented for the newest clinical trial (whatever that means).
Once I'm consented, I'll need to do 2 first-morning voids, as well as have the pharmaceutical company that's sponsoring the study review my biopsy slides to confirm my diagnosis of FSGS.
First of all, do you have any idea how hard it is to get biopsy slides??? It's nearly freaking impossible!!! Annoying that I can't get my own tissue samples, isn't it? Sort of like it's annoying that I can't get lab results through the lab, but rather have to wait for them to be seen by my doctor first before I can get them. IT'S MY BLOOD....MY TISSUE....and always my hassel.
I think Mayo already has my slides from when I started my care there back in March. At least I hope they do, because IU Med Center has them, and they're pretty stingy about releasing them, which equates to more delay.
Today is one of those days that I'm completely tired of it. Tired of keeping it all straight, tired of the hassel, tired of all the work. Just tired. Literally, mentally, physically tired. Do you know that I took a 10 minute nap in my car this morning in the parking lot of work before I went in because I COULD NOT stay awake? I had a full 8 hours of sleep last night...I'm off the melatonin too. UGH.
I just got a call from Mayo for the latest clinical trial that I'll be participating in. Seems like I'll be going on February 21 in order to do a follow-up for the FONT study (which is the 5-year study that I had to back out of due to abnormal pap results), as well as get consented for the newest clinical trial (whatever that means).
Once I'm consented, I'll need to do 2 first-morning voids, as well as have the pharmaceutical company that's sponsoring the study review my biopsy slides to confirm my diagnosis of FSGS.
First of all, do you have any idea how hard it is to get biopsy slides??? It's nearly freaking impossible!!! Annoying that I can't get my own tissue samples, isn't it? Sort of like it's annoying that I can't get lab results through the lab, but rather have to wait for them to be seen by my doctor first before I can get them. IT'S MY BLOOD....MY TISSUE....and always my hassel.
I think Mayo already has my slides from when I started my care there back in March. At least I hope they do, because IU Med Center has them, and they're pretty stingy about releasing them, which equates to more delay.
Today is one of those days that I'm completely tired of it. Tired of keeping it all straight, tired of the hassel, tired of all the work. Just tired. Literally, mentally, physically tired. Do you know that I took a 10 minute nap in my car this morning in the parking lot of work before I went in because I COULD NOT stay awake? I had a full 8 hours of sleep last night...I'm off the melatonin too. UGH.
Tuesday, January 1, 2013
Improved creatinine AND appetite : FSGS Sucks
Haven't updated in awhile....just honestly haven't felt like writing much.
A bit of good (ok, probably great) news is that my creatinine is back down to 1.6 after 1 1/2 weeks off of Prograf and bactrim. It appears that the Prograf was becoming toxic, explaining the sharp increase in my creatinine and all of the other symptoms.
A negative side effect of this, however, is that I've totally regained my appetite. I had lost about 12 pounds in the last month, probably due to not eating / lack of appetite. Sadly, I think I've gained it all back in a few short days. I am CONSTANTLY feeling hungry. I've been on a salt binge too, which is exacerbating the weight gain. Vicious stupid cycle. But DAYUM, food tastes GREAT again!
So I guess now I'm preparing for Dr. Fervenza's study. I'm also going to get a local nephrologist to handle my primary care. I'm not getting the warm and fuzzies that I need with Dr. Fervenza right now...it just seems as though, since he has no other treatment options, that I can't be "treated" anymore. What I mean by that is that he isn't very good about preparing me for the future...discussion options and what not, and that's what I need right now.
I'm realistic and sometimes optimistic, but that in no way belies the fact that the inevitable WILL happen someday. My sanity requires preparation and lots of discussion.
A bit of good (ok, probably great) news is that my creatinine is back down to 1.6 after 1 1/2 weeks off of Prograf and bactrim. It appears that the Prograf was becoming toxic, explaining the sharp increase in my creatinine and all of the other symptoms.
A negative side effect of this, however, is that I've totally regained my appetite. I had lost about 12 pounds in the last month, probably due to not eating / lack of appetite. Sadly, I think I've gained it all back in a few short days. I am CONSTANTLY feeling hungry. I've been on a salt binge too, which is exacerbating the weight gain. Vicious stupid cycle. But DAYUM, food tastes GREAT again!
So I guess now I'm preparing for Dr. Fervenza's study. I'm also going to get a local nephrologist to handle my primary care. I'm not getting the warm and fuzzies that I need with Dr. Fervenza right now...it just seems as though, since he has no other treatment options, that I can't be "treated" anymore. What I mean by that is that he isn't very good about preparing me for the future...discussion options and what not, and that's what I need right now.
I'm realistic and sometimes optimistic, but that in no way belies the fact that the inevitable WILL happen someday. My sanity requires preparation and lots of discussion.
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