SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 3); pain on left side (3); general lower back pain (2); heart palpitations/racing; lower ab muscles weak; white noise in ears; red, itchy, rash on left arm, left thumb, abdomen, nose, chest, right ring finger; hot flashes/night sweats; exhausted; extreme dizziness/light headedness.
Not too bad compared with earlier this week. Still trying to adjust to the Fioricet. It requires me to lie down during the day and makes driving very challenging. It gives you an odd sensation if you close your eyes - almost dizzying, but not like vertigo. Very hard to put into words. I do think it is helping with the headaches, unless I'm just going through a cycle where they have subsided anyway. Regardless, to have those headaches under control is a major victory.
I noticed I was getting frustrated and restless today. For the last few days, I've been mostly on the couch or in bed because of the Fioricet. By this evening, I was getting restless and a bit pissed. When do I get my life back? Here I am, someone who once called herself a distance runner hobbyist being more sedentary than your average Joe. So I hopped on a bike and pedalled in absolute rebellion.
Of course, my quads immediately said "WTF????" because I have been so debilitated for months, but my adrenaline got the best of me (maybe it's the caffeine in the Fioricet?). Yes, my head pounded but I smelled the trees, grass and flowers. I felt wind on my face and really, I could have cared less at that moment had I crashed the bike and cracked my skull on the pavement. For a few minutes, I was me again. I could have been on a Big Wheel and been happy. At least I could pretend to have a life for a few minutes.
Saturday, April 12, 2008
Friday, April 11, 2008
April 11: Getting by?
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 3); pain on left side (3); left knee pain (pain rating 2); left leg pain (pain rating 2); general lower back pain (4); heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; white noise in ears; prickly pain - like a random stabbing with needles in the face, feet and legs; red, itchy, rash on left arm, left thumb, abdomen, nose, chest, right ring finger; hot flashes/night sweats.
So today was the first trial with Butalbital (Fioricet) for the headaches. I could feel them coming on early so I wanted to see if this would really stop them. The first dose was non-eventful but within minutes of taking the second dose four hours later, I became dizzy, lightheaded, ....not exactly sleepy but required an immediate vertical position. Unfortunately I was in the car when all this happened so I was rushing like mad to get home. I was unaware it would have this kind of effect at all. I looked online and it said until one gets used to it after a few days, this is "possible." Great. Thanks. Yet another reason I am uncomfortable driving.
My headache did not get worse though and for that, I am thankful. So if I can adjust to the Fioricet and keep the headaches at bay, then maybe I can make it through the next month. The steroid cream helped the rash. It's not nearly as itchy and no longer hurts. I don't think it has popped up anywhere new. Keeping my fingers crossed.
All in all, today was not bad. I was very productive in the morning, not so much once the new drug kicked in.
I did have to cancel a concert today that was to be in two weeks. I'm very unhappy about that but I knew it would be a stressor. Hopefully I can reschedule the fall. I am still going to try to do the program with the Met conductor. God help me be healthy that day.
As someone who always prized her academics and always strove to be at the highest level, I find myself being okay with getting by. This is a tremendous departure from my goal-oriented life and one, while I certainly understand the lessons, has caused problems otherwise.
Dealing with endometriosis and the past month of side effects, I've had to cancel so many things or been slower than normal on projects. This has caused a huge financial fall out that I am not quite sure how to resolve. I'm working as hard as I can at the moment, given the circumstances, but fear the next two months financially. My health insurance is expensive. I'm incredibly frugal but there is only so far you can go. If I can hope for anything, it's that I can survive minimally scathed and I can "get by."
So today was the first trial with Butalbital (Fioricet) for the headaches. I could feel them coming on early so I wanted to see if this would really stop them. The first dose was non-eventful but within minutes of taking the second dose four hours later, I became dizzy, lightheaded, ....not exactly sleepy but required an immediate vertical position. Unfortunately I was in the car when all this happened so I was rushing like mad to get home. I was unaware it would have this kind of effect at all. I looked online and it said until one gets used to it after a few days, this is "possible." Great. Thanks. Yet another reason I am uncomfortable driving.
My headache did not get worse though and for that, I am thankful. So if I can adjust to the Fioricet and keep the headaches at bay, then maybe I can make it through the next month. The steroid cream helped the rash. It's not nearly as itchy and no longer hurts. I don't think it has popped up anywhere new. Keeping my fingers crossed.
All in all, today was not bad. I was very productive in the morning, not so much once the new drug kicked in.
I did have to cancel a concert today that was to be in two weeks. I'm very unhappy about that but I knew it would be a stressor. Hopefully I can reschedule the fall. I am still going to try to do the program with the Met conductor. God help me be healthy that day.
As someone who always prized her academics and always strove to be at the highest level, I find myself being okay with getting by. This is a tremendous departure from my goal-oriented life and one, while I certainly understand the lessons, has caused problems otherwise.
Dealing with endometriosis and the past month of side effects, I've had to cancel so many things or been slower than normal on projects. This has caused a huge financial fall out that I am not quite sure how to resolve. I'm working as hard as I can at the moment, given the circumstances, but fear the next two months financially. My health insurance is expensive. I'm incredibly frugal but there is only so far you can go. If I can hope for anything, it's that I can survive minimally scathed and I can "get by."
Thursday, April 10, 2008
April 10: The Verdict
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on left side (4); left knee pain (pain rating 2); left leg pain (pain rating 2); general lower back pain (7); pain in ears and throat (pain level 5);fatigue; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; white noise in ears; prickly pain - like a random stabbing with needles in the face, feet and legs; red, itchy, painful rash on left arm, left thumb, abdomen, nose, chest, right ring finger; hot flashes/night sweats.
I went to the doc's today in hopes that I might be removed from this drug. Dr. K thinks I am still experiencing an estrogen flare and I should tough it out so we know for sure. She did give me something else for the headaches (non-narcotic) and some ointment that is supposed to help with the spreading rash. That's not what I wanted to hear because I'm ready for the severity of the side effects to go away. Dr. K said she had not predicted anything quite this severe but still felt like this is in the scope of the estrogen flare and not the actual drug.
The rash has now jumped over to my thumb. It not only itches in all the affected places, it also burns. It itches a lot now!
My ears hurt and my throat hurt. I wonder if I am coming down with something or if these are more side effects.
My lower back was pretty awful today. I do not feel depressed though; that at least is an improvement. The headaches stayed very low. Still very tired so I'm calling it an early night.
I went to the doc's today in hopes that I might be removed from this drug. Dr. K thinks I am still experiencing an estrogen flare and I should tough it out so we know for sure. She did give me something else for the headaches (non-narcotic) and some ointment that is supposed to help with the spreading rash. That's not what I wanted to hear because I'm ready for the severity of the side effects to go away. Dr. K said she had not predicted anything quite this severe but still felt like this is in the scope of the estrogen flare and not the actual drug.
The rash has now jumped over to my thumb. It not only itches in all the affected places, it also burns. It itches a lot now!
My ears hurt and my throat hurt. I wonder if I am coming down with something or if these are more side effects.
My lower back was pretty awful today. I do not feel depressed though; that at least is an improvement. The headaches stayed very low. Still very tired so I'm calling it an early night.
Wednesday, April 9, 2008
April 9: Questions
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on left side (2); left knee pain (pain rating 3); left leg pain (pain rating 3); general lower back pain (4); extreme fatigue; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; white noise in ears; prickly pain - like a random stabbing with needles in the feet and legs; red, itchy rash on left arm, abdomen, nose, chest, right ring finger; hot flashes/night sweats.
This is short and sweet tonight. Not much changed since yesterday other than I continue to be exhausted, more so today. My mood is better, but I can hardly keep my eyes open.
I called ScriptAssist today to discuss my side effects. This is an independent Rx service here in the US that you can call to ask questions, etc. The medical professional with whom I spoke said, given my history, she never would have expected my side effects to be so severe. Nor could she advise me as to whether or not the side effects would abate or continue. She said that less than five percent of patients have the range of side effects that I am having. Lucky me.
I made an appointment to see my surgical OBGYN tomorrow to know whether or not I should continue this treatment. Because the drug has to be shipped and my next shot is scheduled for April 15, I have to give Pharmacy Solutions a lead time. I'll let you know.
The rash continues and is more broken on my chest today. It also is very irritated and actively itches. Nothing seems to make a dent.
I am so tired today, beyond the exhausted I have known so far. No words can describe just how tired I am. I also realized since beginning this drug, I've lost seven pounds. This I want to be careful of because I'm petite anyway. I have not been eating much lately, admittedly. I'm just too tired.
Thanks everyone for writing and for your support.
This is short and sweet tonight. Not much changed since yesterday other than I continue to be exhausted, more so today. My mood is better, but I can hardly keep my eyes open.
I called ScriptAssist today to discuss my side effects. This is an independent Rx service here in the US that you can call to ask questions, etc. The medical professional with whom I spoke said, given my history, she never would have expected my side effects to be so severe. Nor could she advise me as to whether or not the side effects would abate or continue. She said that less than five percent of patients have the range of side effects that I am having. Lucky me.
I made an appointment to see my surgical OBGYN tomorrow to know whether or not I should continue this treatment. Because the drug has to be shipped and my next shot is scheduled for April 15, I have to give Pharmacy Solutions a lead time. I'll let you know.
The rash continues and is more broken on my chest today. It also is very irritated and actively itches. Nothing seems to make a dent.
I am so tired today, beyond the exhausted I have known so far. No words can describe just how tired I am. I also realized since beginning this drug, I've lost seven pounds. This I want to be careful of because I'm petite anyway. I have not been eating much lately, admittedly. I'm just too tired.
Thanks everyone for writing and for your support.
Tuesday, April 8, 2008
April 08: That other dirty word - depression
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on left side (2); left knee pain (pain rating 3); left leg pain (pain rating 3); general lower back pain (4); extreme fatigue; very low mood; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; white noise in ears; prickly pain - like a random stabbing with needles in the feet and legs; red, itchy rash on left arm, abdomen, nose, right ring finger; hot flashes/night sweats.
Headaches at a low level today though I feel them coming on even as I type. The rash continues and now has appeared on my right ring finger. It itches, but not as bad as poison ivy. It's odd where it shows up. More sensations of a needle like pain in my legs and feet. This too seems random.
What's mostly disturbing to me today is how exhausted and depressed I feel. Depression & mental illness runs in my family and this was one of the side effects with which I was most concerned (who knew the headaches were going kick my arse so thoroughly... btw, according to the manufacturer literature, my side effects are "rare." right...). I've felt despondent for a few days now; it came on suddenly... just when I thought I wasn't going to get that side effect.
I thought, like with most drugs I've taken, if you are going to have a side effect, then you would get a sense of what that would be like sooner rather than later. But these side effects have changed as the time-release action of this drug progressed. This rash and the depression only showed up a few days ago. I have so little understanding of this drug. Have people really researched it for treatment in women? How could anyone in his or her right mind prescribe this?
I went ahead with treatment because all the doctors I spoke with gave me the okay. In fact, one medical professional told me despite all the forums criticizing this drug, only the patients that are among the sickest before taking this drug are the ones who have the bad experiences while on it. Other than the endo (which we are all still trying to figure out if this is a symptom of lupus or something else), I was okay. Yes, the endo was robbing my life because of the pain and lack of sleep, but that surely doesn't warrant these side effects, right? I don't even know what to make of this drug, other than I give up and want some Higher Power to take this off my hands. Please say it will stop soon. I can barely breath.
I have four performances in the next five weeks. The only word in my head right now is "how?"
Headaches at a low level today though I feel them coming on even as I type. The rash continues and now has appeared on my right ring finger. It itches, but not as bad as poison ivy. It's odd where it shows up. More sensations of a needle like pain in my legs and feet. This too seems random.
What's mostly disturbing to me today is how exhausted and depressed I feel. Depression & mental illness runs in my family and this was one of the side effects with which I was most concerned (who knew the headaches were going kick my arse so thoroughly... btw, according to the manufacturer literature, my side effects are "rare." right...). I've felt despondent for a few days now; it came on suddenly... just when I thought I wasn't going to get that side effect.
I thought, like with most drugs I've taken, if you are going to have a side effect, then you would get a sense of what that would be like sooner rather than later. But these side effects have changed as the time-release action of this drug progressed. This rash and the depression only showed up a few days ago. I have so little understanding of this drug. Have people really researched it for treatment in women? How could anyone in his or her right mind prescribe this?
I went ahead with treatment because all the doctors I spoke with gave me the okay. In fact, one medical professional told me despite all the forums criticizing this drug, only the patients that are among the sickest before taking this drug are the ones who have the bad experiences while on it. Other than the endo (which we are all still trying to figure out if this is a symptom of lupus or something else), I was okay. Yes, the endo was robbing my life because of the pain and lack of sleep, but that surely doesn't warrant these side effects, right? I don't even know what to make of this drug, other than I give up and want some Higher Power to take this off my hands. Please say it will stop soon. I can barely breath.
I have four performances in the next five weeks. The only word in my head right now is "how?"
Monday, April 7, 2008
April 7: Uncle
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin pain (pain rating 4); pain on left side (2); left knee pain (pain rating 3); left leg pain (pain rating 3); general lower back pain (3); extreme fatigue; low mood; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; white noise in ears; prickly pain; lips extremely chapped (is this a side effect?); red, itchy rash on left arm, abdomen, nose; hot flashes/night sweats.
I'm disheartened today. Last night my headaches again ramped to as severe as I have had without the added benefit of them going away when I slept. I had convinced myself I was getting past the flare, but last night proved otherwise. I tried to sleep and I must have drifted when I heard the fire alarm go off. Or I thought I did. I bolted out of bed and ran into a door (nice), only to find no alarms going off. It was so clear and vivid in my head. I even thought I heard it echo throughout the house.
This rash is truly strange. I don't know what it is. It's not in places that I could say this is a "heat rash." It looks like I'm allergic to something, but what? I am wondering if anyone else has suddenly become allergic to something while on Lupron or know what this rash is. It's not responsive to cortisone cream or Lubriderm.
Because my brother was eleven years my senior, I often found myself saying "Uncle" as a kid. It would have been prompted by him smashing me, bending an appendage in an unnatural way, or some other mayhem until I uttered "Uncle." It was a test of wills; he was trying to make me submit and I would have nothing of it until his size got the best of me.
If it were only so simple in our lives today. These problems with my body... the side effects of this drug... I'm not trying to test anyone's will. I submit. I give in. Uncle. Now f-ck off.
I'm disheartened today. Last night my headaches again ramped to as severe as I have had without the added benefit of them going away when I slept. I had convinced myself I was getting past the flare, but last night proved otherwise. I tried to sleep and I must have drifted when I heard the fire alarm go off. Or I thought I did. I bolted out of bed and ran into a door (nice), only to find no alarms going off. It was so clear and vivid in my head. I even thought I heard it echo throughout the house.
This rash is truly strange. I don't know what it is. It's not in places that I could say this is a "heat rash." It looks like I'm allergic to something, but what? I am wondering if anyone else has suddenly become allergic to something while on Lupron or know what this rash is. It's not responsive to cortisone cream or Lubriderm.
Because my brother was eleven years my senior, I often found myself saying "Uncle" as a kid. It would have been prompted by him smashing me, bending an appendage in an unnatural way, or some other mayhem until I uttered "Uncle." It was a test of wills; he was trying to make me submit and I would have nothing of it until his size got the best of me.
If it were only so simple in our lives today. These problems with my body... the side effects of this drug... I'm not trying to test anyone's will. I submit. I give in. Uncle. Now f-ck off.
Sunday, April 6, 2008
April 6: Sanctuary
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1 ramping to 5); left groin pain (pain rating 4); pain on left side (2); left knee pain (pain rating 1); left leg pain (pain rating 1); general lower back pain (2); fatigue; low mood; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; white noise in ears; prickly pain; red, itchy rash on left arm; hot flashes/night sweats.
Today started out not to be quite so bad. And thankfully, I am getting the sense that I might be on the other side of the flare. Since Friday, things have not been too bad and it's the closest to normal I've been since taking the shot. As the day has worn on, some things have ramped up like the headaches. Like I've said before, once you experience a certain kind of pain, you grow more used to it. Not that it doesn't hurt all the same, but there is a benefit to dealing with an adversary you know.
Something new today is this red rash. It's like I'm allergic to something, but I haven't been out of the house in quite some time so I know that isn't it. It's not as though I've been pulling weeds outside. It's causing welts and it itches like poison oak.
I relish solitude; when I have had it, it's helped trying to get through all of this. Though I find myself in the performing arts, at heart I am very shy and quiet. When a major part of your life is performing or having to be in public, the last thing you want to do is bring that chaos and invasion into your private life. You have to get away from all of that. When I have quiet, I can wish all the pain away. I can close my eyes and see a silent, dark place devoid of stimulus. There are no annoying queries to answer, no one to entertain, no one to interrupt my work, my focus, or my practice. I can peel off the layers of stress like clothes. I'm in my zone and my element. This is my perfect sanctuary.
===========
Later (about midnight)
My head is screaming again. Nice. More often than not, this does seem worse as the day progresses.
Today started out not to be quite so bad. And thankfully, I am getting the sense that I might be on the other side of the flare. Since Friday, things have not been too bad and it's the closest to normal I've been since taking the shot. As the day has worn on, some things have ramped up like the headaches. Like I've said before, once you experience a certain kind of pain, you grow more used to it. Not that it doesn't hurt all the same, but there is a benefit to dealing with an adversary you know.
Something new today is this red rash. It's like I'm allergic to something, but I haven't been out of the house in quite some time so I know that isn't it. It's not as though I've been pulling weeds outside. It's causing welts and it itches like poison oak.
I relish solitude; when I have had it, it's helped trying to get through all of this. Though I find myself in the performing arts, at heart I am very shy and quiet. When a major part of your life is performing or having to be in public, the last thing you want to do is bring that chaos and invasion into your private life. You have to get away from all of that. When I have quiet, I can wish all the pain away. I can close my eyes and see a silent, dark place devoid of stimulus. There are no annoying queries to answer, no one to entertain, no one to interrupt my work, my focus, or my practice. I can peel off the layers of stress like clothes. I'm in my zone and my element. This is my perfect sanctuary.
===========
Later (about midnight)
My head is screaming again. Nice. More often than not, this does seem worse as the day progresses.
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