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 inevitably crash really hard and wake up feeling horrible. Like I'm glued to the bed with a tractor-trailer parked on my head and cement blocks stacked on my limbs. When I sleep at night, I have bad dreams. Fortunately, I suppose, they’ve mostly digressed from outright nightmares to restless visions that are 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, and I usually feel pretty OK. Then at some point before it seems like it should, my body shuts down without warning.
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 it went hand-in-hand with menstrual pain so excruciating it tops out of the 1-10 scale.
It's a little scary for me for a couple of reasons that the headaches are back in full force. 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. The test 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 showed a steady decline in my kidney function, which is an expected side effect of the Amphotericin. Worse still, 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 the last block: dialysis.
Because of my weakened kidney function, it would be dangerous for me to be injected with the contrast agent (gadolinium) that is used to view my brain lesions in the MRI process. Basically, the dye 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 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 the 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.
I have a very vivid memory (unfortunately) of struggling down the stairs, grasping the handrail, then collapsing on the floor of my parking garage and filling a barf bag I had brought home from the emergency room the night before. I made it to the hematologist's office that morning, barely able to sit upright, and shaking like a leaf in a wheelchair. When Dr. Thorough saw me in his office Friday morning, standing on my own, with makeup on and a smile on my face, his eyes bugged out of his head. He threw his arms around me and rocked me back and forth.
So yeah, I can't drive yet. And I get dizzy from walking up stairs. And I have these “shaky on the inside” spells. And I'm a long way off from rejoining my marathon team. But, I'm alive and [apparently, I look] well. So there's that to be thankful for.
I'm getting a metric ton of blood work done tomorrow, and an ultrasound on my kidneys. I'll know more in a couple of weeks about whether the damage that's been done by the drugs may be reversible — as well as whether there is anything still going on in my body that's contributing to the further kidney decline.
This week I’ll have an update as to how my body is doing at regenerating its own blood, and sometime in the next week or so, I think I should hear what the status is of my liver, which they’ll be closely monitoring since the pills I’ll be on for the next year can cause damage there.
In the meantime, I’ve got some unrelated medical concerns to address, so I would appreciate prayers and good vibes in all areas of my physical health, as well as my mental and emotional strength.
Sorry there’s not much humor to this update, but I guess I haven’t felt all that jovial as of late.
A few nights ago, the gravity of everything kind of all caved in on me (as it does from time to time) and I broke down in tears. I was having to stay over at my friend’s house because I had realized nighttime driving was going to be a no-go for now, and between my sobs I just kept telling my friend, “I just want to feel normal” and “I’m so tired of being sick.”
I brushed my teeth before going to bed and literally sobbed the whole way through it. (By the way, I challenge anyone to brush their teeth thoroughly while bawling their eyes out — not easy.)
I don’t like pity parties, and I want to stay strong, and I’m doing everything I can to keep things positive. I know it’s nothing short of a miracle that I’m not in a much worse state — like still in the hospital or six-feet underground. But sometimes it all piles on, and it’s just too much to handle.
There’s a lot going on at all times, and unfortunately sometimes the thought of trying to post an update feels like just one more added stress in my day. But I do give my word that I won’t wait two weeks before the next one.
Love and mercy,
-Molly
When I nap, I inevitably crash really hard and wake up feeling horrible. Like I'm glued to the bed with a tractor-trailer parked on my head and cement blocks stacked on my limbs. When I sleep at night, I have bad dreams. Fortunately, I suppose, they’ve mostly digressed from outright nightmares to restless visions that are 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, and I usually feel pretty OK. Then at some point before it seems like it should, my body shuts down without warning.
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 it went hand-in-hand with menstrual pain so excruciating it tops out of the 1-10 scale.
It's a little scary for me for a couple of reasons that the headaches are back in full force. 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. The test 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 showed a steady decline in my kidney function, which is an expected side effect of the Amphotericin. Worse still, 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 the last block: dialysis.
Because of my weakened kidney function, it would be dangerous for me to be injected with the contrast agent (gadolinium) that is used to view my brain lesions in the MRI process. Basically, the dye 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 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 the 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.
I have a very vivid memory (unfortunately) of struggling down the stairs, grasping the handrail, then collapsing on the floor of my parking garage and filling a barf bag I had brought home from the emergency room the night before. I made it to the hematologist's office that morning, barely able to sit upright, and shaking like a leaf in a wheelchair. When Dr. Thorough saw me in his office Friday morning, standing on my own, with makeup on and a smile on my face, his eyes bugged out of his head. He threw his arms around me and rocked me back and forth.
So yeah, I can't drive yet. And I get dizzy from walking up stairs. And I have these “shaky on the inside” spells. And I'm a long way off from rejoining my marathon team. But, I'm alive and [apparently, I look] well. So there's that to be thankful for.
I'm getting a metric ton of blood work done tomorrow, and an ultrasound on my kidneys. I'll know more in a couple of weeks about whether the damage that's been done by the drugs may be reversible — as well as whether there is anything still going on in my body that's contributing to the further kidney decline.
This week I’ll have an update as to how my body is doing at regenerating its own blood, and sometime in the next week or so, I think I should hear what the status is of my liver, which they’ll be closely monitoring since the pills I’ll be on for the next year can cause damage there.
In the meantime, I’ve got some unrelated medical concerns to address, so I would appreciate prayers and good vibes in all areas of my physical health, as well as my mental and emotional strength.
Sorry there’s not much humor to this update, but I guess I haven’t felt all that jovial as of late.
A few nights ago, the gravity of everything kind of all caved in on me (as it does from time to time) and I broke down in tears. I was having to stay over at my friend’s house because I had realized nighttime driving was going to be a no-go for now, and between my sobs I just kept telling my friend, “I just want to feel normal” and “I’m so tired of being sick.”
I brushed my teeth before going to bed and literally sobbed the whole way through it. (By the way, I challenge anyone to brush their teeth thoroughly while bawling their eyes out — not easy.)
I don’t like pity parties, and I want to stay strong, and I’m doing everything I can to keep things positive. I know it’s nothing short of a miracle that I’m not in a much worse state — like still in the hospital or six-feet underground. But sometimes it all piles on, and it’s just too much to handle.
There’s a lot going on at all times, and unfortunately sometimes the thought of trying to post an update feels like just one more added stress in my day. But I do give my word that I won’t wait two weeks before the next one.
Love and mercy,
-Molly