SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); 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 (2); fatigue; low mood; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; hot flashes/night sweats.
My doctor and I had discussed add-back therapy as a way to combat hot flashes and sweats. To be honest, I've been so cold for so many years, I actually enjoy the heat. It doesn't seem to wake me up even though I sweat profusely at night. I'm all for fewer drugs if I can help it.
I've been reading some other endometriosis journals that I have run across and will add links to help others. I would never wish this condition on anyone else, but as I read other journals, I do feel comforted in that others have some similar symptoms. Sometimes when you lose so much sleep and are fighting something adverse, you wonder if part of this is self-inflicted. I am reading about others having the same leg pain and pain below the ribs (left side like me). Does anyone know why we get this?
For a disease that affects so many women, it seems like the drug companies would stop trying to make billions more off of everything else and would attack this disease for a while. Haven't you made enough money already? Why not run fewer ad spots and throw a little money this way??
I also rest in the fact that I have already been doing a lot of things right. Over and over again I'm reading about the importance of nutrition, especially cutting processed foods, foods with estrogens, and trying not to expose yourself to certain pesticides. So for those of you that have given me crap about the way I eat over the years, you can stop now (that's the sanitized version of what I'd really like to say to you).
This is a good sign! I'm snarky again! :-P
Saturday, April 5, 2008
Friday, April 4, 2008
April 4: Bargaining with God
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 6); pain on left side (4); left knee pain (pain rating 3); left leg pain (pain rating 5); general lower back pain (4); fatigue; low mood; heart palpitations/racing; chest pain; pain in lungs; lower ab muscles weak; hot flashes/night sweats.
Today was not that bad. The headaches were barely there. This is probably the closest I've been to normal in a long time. So I'm hoping maybe I am out of the woods, that the next shot won't bring the worst back.
I got an email from a well-placed conductor to sing on something he was conducting outside of his prestigous opera house. Immediately, what sprang to mind was a silent prayer begging for the health of my voice. Funny how I immediately wanted to plead with God to set things right, to give me back the lovely Suzuki voice of two years ago, somehow... magically... make it right.
As I've been singing through this piece, I notice how weak my lower abdominals are right now, as weak as they were immediately after surgery. They will not engage and my breath is labored.
So I tried to bargain with God.
I know that's really not how life works, as much as I would like for it to be otherwise. If there has been one lesson that had been taught to me in my 30s, it's that I have so little control over what happens. The best thing I can do is use my gifts to always be prepared for the opportunity that might come my way.
Am I ready?
Please can You make it so?
Today was not that bad. The headaches were barely there. This is probably the closest I've been to normal in a long time. So I'm hoping maybe I am out of the woods, that the next shot won't bring the worst back.
I got an email from a well-placed conductor to sing on something he was conducting outside of his prestigous opera house. Immediately, what sprang to mind was a silent prayer begging for the health of my voice. Funny how I immediately wanted to plead with God to set things right, to give me back the lovely Suzuki voice of two years ago, somehow... magically... make it right.
As I've been singing through this piece, I notice how weak my lower abdominals are right now, as weak as they were immediately after surgery. They will not engage and my breath is labored.
So I tried to bargain with God.
I know that's really not how life works, as much as I would like for it to be otherwise. If there has been one lesson that had been taught to me in my 30s, it's that I have so little control over what happens. The best thing I can do is use my gifts to always be prepared for the opportunity that might come my way.
Am I ready?
Please can You make it so?
Thursday, April 3, 2008
April 3: Paradigm Shift
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 6); left groin pain (pain rating 6); pain on left side (6); left knee pain (pain rating 4); left leg pain (pain rating 5); fatigue; feeling of electricity in the face; heart palpitations/racing; chest pain; hot flashes/night sweats.
Today was a mixed bag. I woke with a low buzz headache, which lead me to wonder whether these headaches come on because I am interrupting something upon waking. I do not ever sense a headache when I am asleep. I know hot flashes occur then. My vague understanding is that the pituitary gland is involved in the GnRH antagonist (am i using the terminology correctly?). Are the headaches the body's response to not being asleep when these adjustments are being made? Not sure why I had that sense this morning, but I suddenly realized I am never woken by a headache. Perhaps that would explain why symptoms are less in the morning? Just a theory...
There were times today when the headaches were problematic. I was working at a friend's office today trying to help with an email campaign set-up. Every once in a while I just wanted to put my head down. I worked through it but then when I got up to leave, the pain in my side was severe. Funny I didn't feel it until I moved. Plus, it was both sides. And then my back kicked in. I wanted to stand as still as a statue.
And here again, this is when I was faced with survival. I'm trying to do the normal things that come up in my life... trying to figure out the new paradigm.... trying to do the old normal in the new normal environment. How does that work, I wonder?
Today was a mixed bag. I woke with a low buzz headache, which lead me to wonder whether these headaches come on because I am interrupting something upon waking. I do not ever sense a headache when I am asleep. I know hot flashes occur then. My vague understanding is that the pituitary gland is involved in the GnRH antagonist (am i using the terminology correctly?). Are the headaches the body's response to not being asleep when these adjustments are being made? Not sure why I had that sense this morning, but I suddenly realized I am never woken by a headache. Perhaps that would explain why symptoms are less in the morning? Just a theory...
There were times today when the headaches were problematic. I was working at a friend's office today trying to help with an email campaign set-up. Every once in a while I just wanted to put my head down. I worked through it but then when I got up to leave, the pain in my side was severe. Funny I didn't feel it until I moved. Plus, it was both sides. And then my back kicked in. I wanted to stand as still as a statue.
And here again, this is when I was faced with survival. I'm trying to do the normal things that come up in my life... trying to figure out the new paradigm.... trying to do the old normal in the new normal environment. How does that work, I wonder?
Wednesday, April 2, 2008
April 2: The Veneer
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 5); pain on left side(4); left knee pain (pain rating 4); left leg pain (pain rating 4); fatigue; feeling of electricity in the face; heart palpitations/racing.
I woke up tired this morning and already the low buzz of a headache was there. I've been pushing the envelope for three days and I knew at some point it would catch me (all the while cramming in as much work as possible). I thought I remembered an Emily Dickinson poem that said something like "I heard a fly buzzing in my head" and realized I had the poem wrong. Nevertheless, that's what it feels like. Not only is the headache continuing to ramp as the day wears on, I feel the electrical current in my face.
I grew up in the South (US) and for those of you not from those parts, let me share with you a little about the culture. Being a girl brought up in the South, there are a few ideas that are etched into your brain. One word in particular comes to mind... ineffable. I mean this in the sense that some things should not be said. Ever. And why would that be? In the South, we (especially women) are taught not to rock the boat. Our purpose is to present a veneer so calm and pleasant that nothing would ruffle us. You treat every situation as though you are the hostess at a party. Nothing should be said to disturb your guests and if one of your guests says something disturbing, you dismiss it and turn the conversation to a more pleasant direction. The exceptions are funerals. But then why do you think we stay out of public after someone dies? To re-establish the veneer...
This veneer, arguably, is generational. I'm sure this happens less and less, but in a rural community, this was still certainly something we swore by. This veneer is the same veneer that prevented me from feeling comfortable about asking my mom health questions and prevented her from sharing what was within her own body. Sadly, I lost her before these conversations might have seemed more comfortable for both of us. I know very little about her female health.
And even today, I find there is a veneer that I fight for and struggle to maintain. It's the veneer that I put on because in public I don't want to people to read my face, know how much this hurts, that this struggle has become daily. It's a veneer that I feel much protected behind when things go horribly wrong.
I'm not saying this is the right thing to do. I'm just noticing how this is presently one of my struggles... how to appear normal around others, to mask the pain, to just try to continue my life in a deviated path to normalcy.
I woke up tired this morning and already the low buzz of a headache was there. I've been pushing the envelope for three days and I knew at some point it would catch me (all the while cramming in as much work as possible). I thought I remembered an Emily Dickinson poem that said something like "I heard a fly buzzing in my head" and realized I had the poem wrong. Nevertheless, that's what it feels like. Not only is the headache continuing to ramp as the day wears on, I feel the electrical current in my face.
I grew up in the South (US) and for those of you not from those parts, let me share with you a little about the culture. Being a girl brought up in the South, there are a few ideas that are etched into your brain. One word in particular comes to mind... ineffable. I mean this in the sense that some things should not be said. Ever. And why would that be? In the South, we (especially women) are taught not to rock the boat. Our purpose is to present a veneer so calm and pleasant that nothing would ruffle us. You treat every situation as though you are the hostess at a party. Nothing should be said to disturb your guests and if one of your guests says something disturbing, you dismiss it and turn the conversation to a more pleasant direction. The exceptions are funerals. But then why do you think we stay out of public after someone dies? To re-establish the veneer...
This veneer, arguably, is generational. I'm sure this happens less and less, but in a rural community, this was still certainly something we swore by. This veneer is the same veneer that prevented me from feeling comfortable about asking my mom health questions and prevented her from sharing what was within her own body. Sadly, I lost her before these conversations might have seemed more comfortable for both of us. I know very little about her female health.
And even today, I find there is a veneer that I fight for and struggle to maintain. It's the veneer that I put on because in public I don't want to people to read my face, know how much this hurts, that this struggle has become daily. It's a veneer that I feel much protected behind when things go horribly wrong.
I'm not saying this is the right thing to do. I'm just noticing how this is presently one of my struggles... how to appear normal around others, to mask the pain, to just try to continue my life in a deviated path to normalcy.
April 1: Living Life
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin (pain rating 6); lower back (pain rating 5); hot flashes during evening and night; left leg pain (pain rating 6); knee pain (pain rating 5); cramps (pain rating 3); heart racing/palpitations.
I woke up this morning and thought I had been run over by a truck. I was so tired, to the point that I wondered if I could be more tired. The concert drained me. I did all of load in and had help for load out, but I was on my feet and under the hot lights. I was thankful I did not perform and only moderated; my voice was mostly gone (I think the Ibuprofen might be bringing on hoarseness). My legs and arms were muscularly sore. I had so little energy. Deadlines loomed large.
The headaches were not a problem today, though I was in pain otherwise. I still find the headaches to be the most debilitating. My groin pain ramped up though and makes me less mobile. But I made it through today, including four hours of a research interview.
So tired though. I must close for now.
I woke up this morning and thought I had been run over by a truck. I was so tired, to the point that I wondered if I could be more tired. The concert drained me. I did all of load in and had help for load out, but I was on my feet and under the hot lights. I was thankful I did not perform and only moderated; my voice was mostly gone (I think the Ibuprofen might be bringing on hoarseness). My legs and arms were muscularly sore. I had so little energy. Deadlines loomed large.
The headaches were not a problem today, though I was in pain otherwise. I still find the headaches to be the most debilitating. My groin pain ramped up though and makes me less mobile. But I made it through today, including four hours of a research interview.
So tired though. I must close for now.
Tuesday, April 1, 2008
March 31: Bone Tired
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin(pain rating 4); lower back (pain rating 6); hot flashes during evening and night; left leg pain (pain rating 5); knee pain (pain rating 5); cramps; heart racing/palpitations.
I am exhausted, but I made it through tonight. This is the first time in two weeks (maybe longer?) that I've pushed myself physically for a full day. I am so tired. The concert went well; thank God the group that came in were pros. Now I am going to go to sleep. I hope I sleep for ten hours.
I am exhausted, but I made it through tonight. This is the first time in two weeks (maybe longer?) that I've pushed myself physically for a full day. I am so tired. The concert went well; thank God the group that came in were pros. Now I am going to go to sleep. I hope I sleep for ten hours.
Sunday, March 30, 2008
March 30: Treading Water
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin, left side transverse colon meridian (pain rating 4); lower back (pain rating 6); hot flashes during evening and night; rib cage on the side (pain rating 5); left leg pain (pain rating 5); knee pain (pain rating 5); cramps; heart racing/palpitations.
As quickly as they come, they die off. I have absolutely no idea why or why they come back. I can't say that it's related to medicine, though I would like for them to be (that would mean somehow I could control it). But I wait for the less painful times and try to get as much done as possible. I know I should rest, but my rest times have to count as my pain times so I can catch up otherwise. These deadlines aren't controlled by me.
Today I am feeling cramps for the first time in a while. The doctor said would get a period though, after all this time, I thought perhaps it had passed. I hope it's not as bad as she said it would be. Or at least wait a couple more days. Is there ever a good time to be struggling?
Sometimes I question why I just don't go ahead and get everything removed and be done with it. If I knew for sure I'd really be done with it, sometimes that doesn't seem like such a bad choice.
As quickly as they come, they die off. I have absolutely no idea why or why they come back. I can't say that it's related to medicine, though I would like for them to be (that would mean somehow I could control it). But I wait for the less painful times and try to get as much done as possible. I know I should rest, but my rest times have to count as my pain times so I can catch up otherwise. These deadlines aren't controlled by me.
Today I am feeling cramps for the first time in a while. The doctor said would get a period though, after all this time, I thought perhaps it had passed. I hope it's not as bad as she said it would be. Or at least wait a couple more days. Is there ever a good time to be struggling?
Sometimes I question why I just don't go ahead and get everything removed and be done with it. If I knew for sure I'd really be done with it, sometimes that doesn't seem like such a bad choice.
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