My insomnia these days is sort of self-inflicted. I fight going to bed like it's my mortal enemy, mostly because it feels like it is.
When I "nap," I crash really hard and wake up feeling awful. Like I'm glued to the bed with a tractor trailer parked on my face and cement blocks stacked on my limbs. When I sleep at night, I have bad dreams. Fortunately, I suppose, the dreams have mostly digressed from outright nightmares to restless dreams that as stressful, strange, or slightly disturbing. I guess the Amphotericin is wearing off.
I've been trying to ease back in to the lifestyle of a normal human being, but it's not been as easy as I had hoped. I go out into the world and do things normally functioning people do, then at some point before it seems like it should, my body shuts down.
People tell me I don't look sick, which is nice, I suppose. But I'd rather not feel sick either.
I've had a pretty rough headache for one week straight. It's a pressure headache, ranging in scale from 5-10, most often on the higher end. It's accompanied by a stiff neck and (ATTN: MEN, skip the rest of this paragraph if you don't like hearing about women's health issues) for three whole days went hand-in-hand with menstrual pain so excruciating it tops out of the 1-10 scale.
It's a little scary for me that the headaches are back in full force for a couple of reasons. First, as far as I know, the only way the doctors have to verify the infection has stopped destroying my brain is a new MRI approach, which was planned for early July. It would look for calcification on the brain lesions, which would indicate scarring, which would in turn allow the presumption of ceased activity.
The problem with that is I recently learned I am not going to be able to have an MRI in the foreseeable future. My daily blood work in the hospital exposed a steady trend of decline in my kidney function, which is an expected side effect of the Ampho. But my post-hospital blood work shows an even more rapid and exponential decline.
I saw a phrenologist last week, who told me my kidneys are currently functioning at about 27%. He showed me where I land on a color coded chart, and the next block over from mine was "dialysis."
Because of the weakened kidney function, it would be dangerous for me to be injected with the contrast agent, gadolinium, used to view my brain lesions on the MRI images. Basically, the due would stay in my body because my kidneys won't process it out.
The second thing that sucks about the return of the headaches is that because of the kidney situation, I am no longer permitted to take NSAID drugs, such as Ibufrofen, Motrin, Indomethacin -- also known as the only drugs that help my headaches (and crazy intense menstrual pain) without knocking me out. My pain relief choices now include Vicodin, Norco, Valium, and muscle relaxers...not exactly meds I can take and expect to do anything other than sleep (you know, that thing I've been avoiding at all costs).
There are some headache meds out there like Tramadol or Altrim that I have had multiple very bad reactions to, so they're not an option for me. I'm hoping to hear from my neurologist tomorrow that there is some magic drug that won't affect my kidneys or knock me on my butt or give me a panic attack.
Though I'm constantly frustrated by the pain, and the shaky hands, and the weak body, and lack of stamina, I'm trying to keep things in proper perspective. For instance, despite the fact that I could no longer hold my eyes open by 8:15 the other night, and had to call for a heating pad at midnight, I'm still light years ahead of where I was less than one month ago.
When I "nap," I crash really hard and wake up feeling awful. Like I'm glued to the bed with a tractor trailer parked on my face and cement blocks stacked on my limbs. When I sleep at night, I have bad dreams. Fortunately, I suppose, the dreams have mostly digressed from outright nightmares to restless dreams that as stressful, strange, or slightly disturbing. I guess the Amphotericin is wearing off.
I've been trying to ease back in to the lifestyle of a normal human being, but it's not been as easy as I had hoped. I go out into the world and do things normally functioning people do, then at some point before it seems like it should, my body shuts down.
People tell me I don't look sick, which is nice, I suppose. But I'd rather not feel sick either.
I've had a pretty rough headache for one week straight. It's a pressure headache, ranging in scale from 5-10, most often on the higher end. It's accompanied by a stiff neck and (ATTN: MEN, skip the rest of this paragraph if you don't like hearing about women's health issues) for three whole days went hand-in-hand with menstrual pain so excruciating it tops out of the 1-10 scale.
It's a little scary for me that the headaches are back in full force for a couple of reasons. First, as far as I know, the only way the doctors have to verify the infection has stopped destroying my brain is a new MRI approach, which was planned for early July. It would look for calcification on the brain lesions, which would indicate scarring, which would in turn allow the presumption of ceased activity.
The problem with that is I recently learned I am not going to be able to have an MRI in the foreseeable future. My daily blood work in the hospital exposed a steady trend of decline in my kidney function, which is an expected side effect of the Ampho. But my post-hospital blood work shows an even more rapid and exponential decline.
I saw a phrenologist last week, who told me my kidneys are currently functioning at about 27%. He showed me where I land on a color coded chart, and the next block over from mine was "dialysis."
Because of the weakened kidney function, it would be dangerous for me to be injected with the contrast agent, gadolinium, used to view my brain lesions on the MRI images. Basically, the due would stay in my body because my kidneys won't process it out.
The second thing that sucks about the return of the headaches is that because of the kidney situation, I am no longer permitted to take NSAID drugs, such as Ibufrofen, Motrin, Indomethacin -- also known as the only drugs that help my headaches (and crazy intense menstrual pain) without knocking me out. My pain relief choices now include Vicodin, Norco, Valium, and muscle relaxers...not exactly meds I can take and expect to do anything other than sleep (you know, that thing I've been avoiding at all costs).
There are some headache meds out there like Tramadol or Altrim that I have had multiple very bad reactions to, so they're not an option for me. I'm hoping to hear from my neurologist tomorrow that there is some magic drug that won't affect my kidneys or knock me on my butt or give me a panic attack.
Though I'm constantly frustrated by the pain, and the shaky hands, and the weak body, and lack of stamina, I'm trying to keep things in proper perspective. For instance, despite the fact that I could no longer hold my eyes open by 8:15 the other night, and had to call for a heating pad at midnight, I'm still light years ahead of where I was less than one month ago.