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.
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