SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 3); pain on sides (5); general lower back pain (3); lower ab muscles weak; white noise in ears; chest pain (5); mental confusion; hot flashes/night sweats; needle-like feeling in legs; exhausted.
Today was spent the road with my spouse driving. I was wobbly at the wedding and had problems walking, with balance. I might opt for a liver function test. Though I am not jaundiced, I understand that muscle weakness can be a manisfestation of poor liver function, much like what is seen as intolerance to statin drugs.
The Fioricet is definitely helping the headaches, but I still cannot take it unless I nap soon. So it is more like me just trying to survive the headaches for most of the day and then take the Fioricet later. At least I know something works and don't have to feel like a hostage.
Saturday, April 19, 2008
April 18: Surviving in the new normal
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 7); left groin pain (pain rating 3); pain on sides (5); general lower back pain (3); lower ab muscles weak; white noise in ears; chest pain (5); mental confusion; hot flashes/night sweats; needle-like feeling in legs; exhausted.
I made it through my rehearsal. It wasn't my best singing though I don't believe it was my worst. I had the lovely experience of a migraine and a hot flash during. Plus, when I felt the headache coming on, I had taken 800 mg of Ibuprofen to see if it would buy me some time (still was wary of the Fioricet) which rendered me hoarse. Oh, the life of a singer.
I felt tired and anemic while singing... like I was using a 10th of my voice. Tomorrow proves to be another long day as we have to drive to my sister's wedding. My spouse reworked his schedule to go since I still cannot drive.
Good news is that Fioricet seems to be very effective against these headaches. Finally something that works. The side effects from the Fioricet are becoming more tolerable. I hope to drive longer distances soon.
Must close for now. So tired and tomorrow includes 10 hours of driving.
Thursday, April 17, 2008
April 17: Discriminating Evidence
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 7); left groin pain (pain rating 3); pain on sides (5); general lower back pain (3); lower ab muscles weak; white noise in ears; inner ear pain (7); chest pain (5); mental confusion; hot flashes/night sweats; exhausted.
So, yes, I am a casualty of the migraines today. I've been resisting using medicine to see which drug was causing what effect, and, I just hate taking meds if I don't have to. But today I had too. My head pounded with my pulse, even as I was laying down. I could count my heartbeat instead of sheep.
A big question in my mind is just which of the side effects are from an estrogen surge and which are from the Lupron. Definitely the headaches are from the estrogen surge; it's well documented. The confusion... I'm not sure. I know that menopause can cause confusion, but a little air headedness seems different than forgetting one's address, the way to a venue you have been often, etc. in my mind at least. So this is why I am a little bothered by this and trying to discern what is causing what.
I have some new info I am going to follow through on. Here are the links:
http://www.endometriosistreatment.org/
This is Dr. Redwine, who makes some very interesting arguments about endometriosis and treatment. He's a specialist. I'm considering sending him my records for review, which only costs $125 (that's reasonable in my book).
http://www.pelvicpain.com/
This is Dr. Cook, who also makes some interesting arguments re: pathology, what endo looks like, etc. I know for certain when I last went in, my doc just looked for the dark lesions and did not do any tissue samples. As a result, my pain never went away.
I don't know if these doctors are the answer but 1) they take insurance (which wasn't true of Dr. Nezhat in Atlanta who is a world-renown specialist. I don't have $30k+ to throw around on this); 2) I am willing to try another laparoscopic in lieu of a hysterectomy, if they have a different approach and a convincing argument for their techniques.
So maybe these links will help as well. I found the information on their sites to be very helpful at least and it certainly got me thinking. Hoping for a good day tomorrow as I have a rehearsal with a conductor.
So, yes, I am a casualty of the migraines today. I've been resisting using medicine to see which drug was causing what effect, and, I just hate taking meds if I don't have to. But today I had too. My head pounded with my pulse, even as I was laying down. I could count my heartbeat instead of sheep.
A big question in my mind is just which of the side effects are from an estrogen surge and which are from the Lupron. Definitely the headaches are from the estrogen surge; it's well documented. The confusion... I'm not sure. I know that menopause can cause confusion, but a little air headedness seems different than forgetting one's address, the way to a venue you have been often, etc. in my mind at least. So this is why I am a little bothered by this and trying to discern what is causing what.
I have some new info I am going to follow through on. Here are the links:
http://www.endometriosistreatment.org/
This is Dr. Redwine, who makes some very interesting arguments about endometriosis and treatment. He's a specialist. I'm considering sending him my records for review, which only costs $125 (that's reasonable in my book).
http://www.pelvicpain.com/
This is Dr. Cook, who also makes some interesting arguments re: pathology, what endo looks like, etc. I know for certain when I last went in, my doc just looked for the dark lesions and did not do any tissue samples. As a result, my pain never went away.
I don't know if these doctors are the answer but 1) they take insurance (which wasn't true of Dr. Nezhat in Atlanta who is a world-renown specialist. I don't have $30k+ to throw around on this); 2) I am willing to try another laparoscopic in lieu of a hysterectomy, if they have a different approach and a convincing argument for their techniques.
So maybe these links will help as well. I found the information on their sites to be very helpful at least and it certainly got me thinking. Hoping for a good day tomorrow as I have a rehearsal with a conductor.
Wednesday, April 16, 2008
April 16: A fog descends
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 3); pain on left side (3); general lower back pain (5); neck pain (pain rating 3); lower ab muscles weak; white noise in ears; inner ear pain (4); chest pain (5); mental confusion; hot flashes/night sweats; exhausted.
Today was a big test. I had to fly to my other residence. On normal days for me, this would be no big deal. There were some years I was on a plane 40 times. But today, everything became more significant. I would have to spend more time out of bed. I would have to pack a rollerboard, drag it, get to and from the car, go through security, etc. All the things that used to be normal, now seem huge.
I hadn't seen my other place for three months. A few things happened that were disconcerting to me. I couldn't remember a neighbor's name and had to ask my spouse. Tonight, I couldn't remember the way to the theater from our house. The house seemed new. I had no recollection of where I had put anything.
This is a little frightening.
I know how hard I fight every day to make mental connections, to think past pain, to stay focused. What is this new fog? This seems to go beyond the befuddlement of recent days. These are huge lapses in memory. Has anyone experienced this?
Today was a big test. I had to fly to my other residence. On normal days for me, this would be no big deal. There were some years I was on a plane 40 times. But today, everything became more significant. I would have to spend more time out of bed. I would have to pack a rollerboard, drag it, get to and from the car, go through security, etc. All the things that used to be normal, now seem huge.
I hadn't seen my other place for three months. A few things happened that were disconcerting to me. I couldn't remember a neighbor's name and had to ask my spouse. Tonight, I couldn't remember the way to the theater from our house. The house seemed new. I had no recollection of where I had put anything.
This is a little frightening.
I know how hard I fight every day to make mental connections, to think past pain, to stay focused. What is this new fog? This seems to go beyond the befuddlement of recent days. These are huge lapses in memory. Has anyone experienced this?
Tuesday, April 15, 2008
April 15: Round two
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 3); pain on left side (3); general lower back pain (1); neck pain (pain rating 7); lower ab muscles weak; white noise in ears; hot flashes/night sweats; exhausted; extreme dizziness/light headedness.
Wow! I just discovered they put birds on Lupron?! What?! And they don't seem to like it any better than we do:
http://community.livejournal.com/cockatiels/1000152.html
Last night the headaches tried to ramp up, but I took the Fioricet and I think it worked to keep it moderate. However, today, I needed to be clear-headed to finish taxes and drive to the doctor's office. No meds (do you think I could endure natural childbirth by the end of all this???). My spouse, who has only seen me probably four days in the last eight weeks because of his own schedule, noticed how shaky I was. And I thought I was having a decent day! But this does demonstrate why I have not felt that comfortable driving more than a few miles. Something isn't quite right and I do not know how to describe it. There are times I feel addled, I forget words, I forget where I am. There are times when my hands are shaking, that I cannot stand, that I cannot do anything that requires muscular control - but not because I feel overmedicated. Something feels imbalanced and I lack the words for an accurate description.
So today was the big day: Lupron Redux (a.k.a. Injection #2). The last injection day was no big deal so I thought today would be easy. I looked a little bit more at the shot and its container (I was too scared last time). It comes with a liquid and a powder that is separated; the nurse then draws the liquid into the powder and mixes it. There were five nurses watching because they had not seen it before. Really makes me wonder how often they administer this drug.
I got a different nurse this time. While I might be on the petite side, I do not lack a rear-end for them to give me this drug. However, somehow this nurse, sweet as she was, managed to miss my ass!!!! Can you believe it? It was too high... for a second I thought she had nabbed a kidney. The room went black and I thought I was fainting. What a whimp I am! On the way home, I felt awful and could barely drive. There was a vice like pain that started at my spine from my shoulders and tightened its grip on the back of my neck into my head. So much for the no-brainer. Ugh.
Tomorrow is an early flight. I get to be at my other place for the first time in three months. I've missed it and hope I can rest before my rehearsal on Friday and a very busy Saturday. Hoping for health and the least side effects possible. That seems to be my daily prayer as of late.
Wow! I just discovered they put birds on Lupron?! What?! And they don't seem to like it any better than we do:
http://community.livejournal.com/cockatiels/1000152.html
Last night the headaches tried to ramp up, but I took the Fioricet and I think it worked to keep it moderate. However, today, I needed to be clear-headed to finish taxes and drive to the doctor's office. No meds (do you think I could endure natural childbirth by the end of all this???). My spouse, who has only seen me probably four days in the last eight weeks because of his own schedule, noticed how shaky I was. And I thought I was having a decent day! But this does demonstrate why I have not felt that comfortable driving more than a few miles. Something isn't quite right and I do not know how to describe it. There are times I feel addled, I forget words, I forget where I am. There are times when my hands are shaking, that I cannot stand, that I cannot do anything that requires muscular control - but not because I feel overmedicated. Something feels imbalanced and I lack the words for an accurate description.
So today was the big day: Lupron Redux (a.k.a. Injection #2). The last injection day was no big deal so I thought today would be easy. I looked a little bit more at the shot and its container (I was too scared last time). It comes with a liquid and a powder that is separated; the nurse then draws the liquid into the powder and mixes it. There were five nurses watching because they had not seen it before. Really makes me wonder how often they administer this drug.
I got a different nurse this time. While I might be on the petite side, I do not lack a rear-end for them to give me this drug. However, somehow this nurse, sweet as she was, managed to miss my ass!!!! Can you believe it? It was too high... for a second I thought she had nabbed a kidney. The room went black and I thought I was fainting. What a whimp I am! On the way home, I felt awful and could barely drive. There was a vice like pain that started at my spine from my shoulders and tightened its grip on the back of my neck into my head. So much for the no-brainer. Ugh.
Tomorrow is an early flight. I get to be at my other place for the first time in three months. I've missed it and hope I can rest before my rehearsal on Friday and a very busy Saturday. Hoping for health and the least side effects possible. That seems to be my daily prayer as of late.
April 14: The other shoe
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 1); pain on left side (1); general lower back pain (1); lower ab muscles weak; white noise in ears; hot flashes/night sweats; exhausted.
So this was the third time in the last month in which I had two consecutive days that were okay. This has happened approximately a week apart each time. Is this a pattern? The other two times I had some of my worst days immediately following. Tonight, I could feel the headaches ramping again and I took a Fioricet. It seems to help... I think? We'll see what tomorrow brings. (Tomorrow is also my 2nd shot).
I received an informative email today from a brave gal in Canada who has a similar story to mine. Frighteningly, she had been doing okay on Lupron after she got past the initial flare until her fourth month. Then all hell broke loose. I do not understand how this drug works or why that would happen to her. Her side effects were so severe that she discontinued use and did not complete the full six months. She is now sixteen weeks past her last shot and described herself as someone that feels like an old woman. Prior to this treatment, she was athletic and slim.
Is there any kind of comfort level that can be reached for those of us that get the side effects or are we left navigating our lives as though we are walking on eggshells waiting for the other shoe to drop?
So this was the third time in the last month in which I had two consecutive days that were okay. This has happened approximately a week apart each time. Is this a pattern? The other two times I had some of my worst days immediately following. Tonight, I could feel the headaches ramping again and I took a Fioricet. It seems to help... I think? We'll see what tomorrow brings. (Tomorrow is also my 2nd shot).
I received an informative email today from a brave gal in Canada who has a similar story to mine. Frighteningly, she had been doing okay on Lupron after she got past the initial flare until her fourth month. Then all hell broke loose. I do not understand how this drug works or why that would happen to her. Her side effects were so severe that she discontinued use and did not complete the full six months. She is now sixteen weeks past her last shot and described herself as someone that feels like an old woman. Prior to this treatment, she was athletic and slim.
Is there any kind of comfort level that can be reached for those of us that get the side effects or are we left navigating our lives as though we are walking on eggshells waiting for the other shoe to drop?
Sunday, April 13, 2008
April 13: Closer to fine
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 1); pain on left side (1); general lower back pain (4); lower ab muscles weak; white noise in ears; hot flashes/night sweats; exhausted.
Today was a challenge; I performed in public for the first time in six weeks and also was honored at an awards ceremony. Translation? Long day. However, I felt decent, though I am very tired right now.
My next shot is on Tuesday and I keep hoping that my current adjustments stay on track. I fear the 2nd shot will make the whole cycle start over again. I guess I won't know until I try.
Today was a challenge; I performed in public for the first time in six weeks and also was honored at an awards ceremony. Translation? Long day. However, I felt decent, though I am very tired right now.
My next shot is on Tuesday and I keep hoping that my current adjustments stay on track. I fear the 2nd shot will make the whole cycle start over again. I guess I won't know until I try.
Saturday, April 12, 2008
April 12: Training Wheels
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.
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.
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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