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.
Saturday, March 29, 2008
March 29: These *effing* headaches
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8)
Because this is all I can think about this very second... the pounding in my head. I can barely see; taking a shower was dizzying; I can barely think. Why won't this go away? There's nothing else that exists this very second except my incessant heartbeat felt as the pounding on the top of my head.
Later in the day...
Today was awful. During the middle of these mind numbing headaches, I received an urgent call from the hall to listen to balance for an important concert tonight (not one I am performing on but one I am involved with in other ways). Luckily, the hall is practically across from my house, though I don't remember how I got there. The sound was deafening to me and just reverbrated along with everything else inside my head. I barely managed to listen or be human.
I didn't get to go back tonight though I was needed and needed to be there to meet and greet, be supportive, meet with donors, etc. Way too pained. So I stayed home and struggled to stay focused enough to work on other marketing projects. Perhaps this is what the crown of thorns felt like...
Because this is all I can think about this very second... the pounding in my head. I can barely see; taking a shower was dizzying; I can barely think. Why won't this go away? There's nothing else that exists this very second except my incessant heartbeat felt as the pounding on the top of my head.
Later in the day...
Today was awful. During the middle of these mind numbing headaches, I received an urgent call from the hall to listen to balance for an important concert tonight (not one I am performing on but one I am involved with in other ways). Luckily, the hall is practically across from my house, though I don't remember how I got there. The sound was deafening to me and just reverbrated along with everything else inside my head. I barely managed to listen or be human.
I didn't get to go back tonight though I was needed and needed to be there to meet and greet, be supportive, meet with donors, etc. Way too pained. So I stayed home and struggled to stay focused enough to work on other marketing projects. Perhaps this is what the crown of thorns felt like...
March 28: Mixed Bag
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 4); left groin, left side transverse colon meridian (pain rating 4); lower back, upper left corner sacrum (pain rating 5); hot flashes during evening and night; rib cage on the side (pain rating 5); left leg pain (pain rating 4); knee pain (pain rating 4); Hip pain (pain rating 3); Elbow pain (pain rating 4); blood in stool; heart racing/palpitations; fatigue.
Today (really yesterday since I am posting late) was still payback for pushing things too far the day before. I managed to squeak out a successful two-hour interview in a dark corner of Starbucks but was brutally tired afterwards. Everything started ramping up a notch, still manageable, but took a lot more effort. I am wondering about the passing of blood... that perhaps with all the ibuprofen I've caused an ulcer somewhere. I don't feel it if I have, other than being very tired. Am I anemic?
I have a ridiculous amount of work that needs to be completed in the next 48 hours. Tonight is another public appearance at a Broadway gala that I know I need to be there for. At the same time, I'm wondering how I will pull it off being on my feet so much.
Today (really yesterday since I am posting late) was still payback for pushing things too far the day before. I managed to squeak out a successful two-hour interview in a dark corner of Starbucks but was brutally tired afterwards. Everything started ramping up a notch, still manageable, but took a lot more effort. I am wondering about the passing of blood... that perhaps with all the ibuprofen I've caused an ulcer somewhere. I don't feel it if I have, other than being very tired. Am I anemic?
I have a ridiculous amount of work that needs to be completed in the next 48 hours. Tonight is another public appearance at a Broadway gala that I know I need to be there for. At the same time, I'm wondering how I will pull it off being on my feet so much.
Friday, March 28, 2008
March 27: Pushing the envelope
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 4); left groin, left side transverse colon meridian (pain rating 4); lower back, upper left corner sacrum (pain rating 6); hot flashes during evening and night; rib cage on the side (pain rating 5); left leg pain (pain rating 2); knee pain (pain rating 2); Hip pain (pain rating 3); Elbow pain (pain rating 4); heart racing/palpitations.
The headaches were manageable but began to ramp up as the day wore on. Today was a big test and I knew I was pushing the envelope. There was a concert/lecture series at 1pm for which I prepared and gave program notes. Shortly thereafter, I had a two-hour meeting with an unexplored contact whom I hope will become a donor and/or connect me with potential sponsors. By the end, I was drained and my lower back was in rebellion.
When I got home, walking was a chore. It was that upper left corner on the sacrum that was crying foul. Again, had the headaches been at their worst this would have impossible. It wasn't easy. But I made it. I functioned for four hours in public, with 30 minutes of that time standing. Very difficult but not impossible.
The headaches were manageable but began to ramp up as the day wore on. Today was a big test and I knew I was pushing the envelope. There was a concert/lecture series at 1pm for which I prepared and gave program notes. Shortly thereafter, I had a two-hour meeting with an unexplored contact whom I hope will become a donor and/or connect me with potential sponsors. By the end, I was drained and my lower back was in rebellion.
When I got home, walking was a chore. It was that upper left corner on the sacrum that was crying foul. Again, had the headaches been at their worst this would have impossible. It wasn't easy. But I made it. I functioned for four hours in public, with 30 minutes of that time standing. Very difficult but not impossible.
Thursday, March 27, 2008
March 26: Reprieve Extended?
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 4); left groin, left side transverse colon meridian (pain rating 4); hot flashes during evening and night; left leg pain (pain rating 2); knee pain (pain rating 2); Hip pain (pain rating 3); Elbow pain (pain rating 3); heart racing/palpitations.
Posting this just a little late...
Most of today was a 2nd day into the reprieve. For the most part, the headaches were not a factor, just a low buzz of pain. I feel a bit drugged during the day(current regimen is 3.2g ibuprofen during the day, switch to 2 Darvocet 100-650 at night, add in Dramamine); however, if I can diminish these headaches, everything else is manageable at a moderate level. Severe is just severe; not much you can do about that.
Of course, everything was going pretty well until we tried to go out to eat and then I feel the claws of pain on the top of my head again. It didn't ramp up to terrible though, so I'm hoping it will go back down. There's really no rhyme or reason to this... no pattern I can establish with diet or sleep. I'm not even sure all the medicines help since there were certainly days in which they didn't. But I'll hold out for hope that maybe I'm past the flares? Or at least the worst part of them?
Of others' experiences, I've read where (and was warned by my doctor) to expect a period that would last for many, many days. That hasn't happened. I don't know if it will or if what I experienced was the worst of it. It's a little like waiting for the other shoe to drop while trying to stay positive.
Interestingly, I've just discovered in my own research that apparently Lupron is part of the treatment for women seeking in vitro? I cannot fathom wanting a child so badly that someone would actively choose this course of treatment. That's certainly not a criticism; it's a more a striking realization on my part that I've never harbored any kind of feeling like that. I'm sure what I'm describing must be as foreign to those of you that do, as your feelings are to me.
Posting this just a little late...
Most of today was a 2nd day into the reprieve. For the most part, the headaches were not a factor, just a low buzz of pain. I feel a bit drugged during the day(current regimen is 3.2g ibuprofen during the day, switch to 2 Darvocet 100-650 at night, add in Dramamine); however, if I can diminish these headaches, everything else is manageable at a moderate level. Severe is just severe; not much you can do about that.
Of course, everything was going pretty well until we tried to go out to eat and then I feel the claws of pain on the top of my head again. It didn't ramp up to terrible though, so I'm hoping it will go back down. There's really no rhyme or reason to this... no pattern I can establish with diet or sleep. I'm not even sure all the medicines help since there were certainly days in which they didn't. But I'll hold out for hope that maybe I'm past the flares? Or at least the worst part of them?
Of others' experiences, I've read where (and was warned by my doctor) to expect a period that would last for many, many days. That hasn't happened. I don't know if it will or if what I experienced was the worst of it. It's a little like waiting for the other shoe to drop while trying to stay positive.
Interestingly, I've just discovered in my own research that apparently Lupron is part of the treatment for women seeking in vitro? I cannot fathom wanting a child so badly that someone would actively choose this course of treatment. That's certainly not a criticism; it's a more a striking realization on my part that I've never harbored any kind of feeling like that. I'm sure what I'm describing must be as foreign to those of you that do, as your feelings are to me.
Tuesday, March 25, 2008
March 25: Reprieve
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin, left side transverse colon meridian (pain rating 3); hot flashes during night only; left leg pain (pain rating 2); knee pain (pain rating 2); Hip pain (pain rating 3); Elbow pain (pain rating 3); heart racing/palpitations.
Today is like a much needed rain storm during a drought. I had a hard time sleeping last night, up until 4.30a, and I might have over-medicated. But the pain was so much less today. Who could have predicted that after yesterday being so bad? The headaches were virtually non-existent, which made it easier to deal with everything else. Now I realize just how taxing the headaches are. I was pretty foggy today... again probably too many meds. But at least I didn't hurt much. Thank God for small victories.
Today is like a much needed rain storm during a drought. I had a hard time sleeping last night, up until 4.30a, and I might have over-medicated. But the pain was so much less today. Who could have predicted that after yesterday being so bad? The headaches were virtually non-existent, which made it easier to deal with everything else. Now I realize just how taxing the headaches are. I was pretty foggy today... again probably too many meds. But at least I didn't hurt much. Thank God for small victories.
Monday, March 24, 2008
March 24: Navigating what has to be done
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin, left side transverse colon meridian (pain rating 7); hot flashes during night only; left leg pain (pain rating 4); knee pain (pain rating 4); Hip pain (pain rating 4); Elbow pain (pain rating 4); spine pain between shoulder blades (pain rating 5); heart racing/palpitations.
Could these headaches get any worse? Just when I think they have to start fading, they slap me with their intensity. I ventured out of the house today... the first time in five days. I met with someone important and committed to a date, all the while wondering if I should. It was all I could do to stay focused and make an attempt at a normal conversation. I wonder how I was perceived? Did I seem spacey? Did I seem like a normal person? Was I blinking too much?
The light actually got to me a little in the bright sunlight-drenched Starbucks. But I had to do it. Had to go out and try to just be a person again, if only for 90 minutes.
My heart beats hard today and the palpitations make it seem as though my heart is like a fish out of water, flopping about on dry land. When I walk my hips ache, my groin feels like it's being stabbed. Some of this I can mask, if it stays at an even level. Some of it, when it suddenly ramps up for no reason, brings me close to tears.
In my virtual world of emails and e-projects, I can start and stop, go back and double check. It's easier to hide behind the facade. My face can wince at will. No one bears witness as I lay my head down on the table out of desperation when the pain gets the best of me.
Is this my new normal? A redefined dimension where chronic pain is the standard benchmark? I want to run again... to bike again... to sing again. I can only hope there is something better at the end of all of this.
Could these headaches get any worse? Just when I think they have to start fading, they slap me with their intensity. I ventured out of the house today... the first time in five days. I met with someone important and committed to a date, all the while wondering if I should. It was all I could do to stay focused and make an attempt at a normal conversation. I wonder how I was perceived? Did I seem spacey? Did I seem like a normal person? Was I blinking too much?
The light actually got to me a little in the bright sunlight-drenched Starbucks. But I had to do it. Had to go out and try to just be a person again, if only for 90 minutes.
My heart beats hard today and the palpitations make it seem as though my heart is like a fish out of water, flopping about on dry land. When I walk my hips ache, my groin feels like it's being stabbed. Some of this I can mask, if it stays at an even level. Some of it, when it suddenly ramps up for no reason, brings me close to tears.
In my virtual world of emails and e-projects, I can start and stop, go back and double check. It's easier to hide behind the facade. My face can wince at will. No one bears witness as I lay my head down on the table out of desperation when the pain gets the best of me.
Is this my new normal? A redefined dimension where chronic pain is the standard benchmark? I want to run again... to bike again... to sing again. I can only hope there is something better at the end of all of this.
Sunday, March 23, 2008
March 23: The Quest for Normalcy
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin, left side transverse colon meridian (pain rating 7); hot flashes during night only; left leg pain (pain rating 4); knee pain (pain rating 4); Hip pain (pain rating 4); Elbow pain (pain rating 4); heart racing/palpitations.
Today is not great. Nothing is making a dent in the headaches/groin pain and there are some new casualties I just don't want to deal with... hips (yes, both) and elbow (both). My hopes of localizing this to the left side are not honored as I try to think of ways to block these new feelings. And I look at the coming week and wonder what it will bring as well.
It's times like these that make me question what the hell I was thinking to begin with. Why am I doing this? What am I trying to avoid? Is this really worth it? And when your head hurts, you struggle just to complete the thought.
I remind myself that this is a diagnostic, first and foremost. I should have my answer in a few weeks.
I'm avoiding a hysterectomy or trying to. Somehow bringing in a hormonal imbalance so early seems risky with all the cancer warnings from add-on estrogen therapies. I also worry about the effects on my voice that a hysterectomy would have. And while I wasn't ready to close the door on fertility options, it was never a top priority or even a goal. At least that part is not hard for me to face. There are plenty of children to love; they needn't be my own.
That being said, there are also instances in which a hysterectomy does not get all of the endometriosis, depending on where it has embedded. Wouldn't that smack of irony if one went through such a major and invasive surgery, only to have it not work? Hard to know what can of worms to open and how far...
All-in-all I think that people who deal with chronic pain seek normality again. That distant past time when colours were rosy, there was money in the bank, the sky was endless and blue. Seems like a dream world. And yet, I keep telling myself, it exists. Most people do not have to navigate their lives like this, constantly aware, constantly rushing to mentally block the adversary within. Most people are just fine. That's what I want again... to be just fine.
Today is not great. Nothing is making a dent in the headaches/groin pain and there are some new casualties I just don't want to deal with... hips (yes, both) and elbow (both). My hopes of localizing this to the left side are not honored as I try to think of ways to block these new feelings. And I look at the coming week and wonder what it will bring as well.
It's times like these that make me question what the hell I was thinking to begin with. Why am I doing this? What am I trying to avoid? Is this really worth it? And when your head hurts, you struggle just to complete the thought.
I remind myself that this is a diagnostic, first and foremost. I should have my answer in a few weeks.
I'm avoiding a hysterectomy or trying to. Somehow bringing in a hormonal imbalance so early seems risky with all the cancer warnings from add-on estrogen therapies. I also worry about the effects on my voice that a hysterectomy would have. And while I wasn't ready to close the door on fertility options, it was never a top priority or even a goal. At least that part is not hard for me to face. There are plenty of children to love; they needn't be my own.
That being said, there are also instances in which a hysterectomy does not get all of the endometriosis, depending on where it has embedded. Wouldn't that smack of irony if one went through such a major and invasive surgery, only to have it not work? Hard to know what can of worms to open and how far...
All-in-all I think that people who deal with chronic pain seek normality again. That distant past time when colours were rosy, there was money in the bank, the sky was endless and blue. Seems like a dream world. And yet, I keep telling myself, it exists. Most people do not have to navigate their lives like this, constantly aware, constantly rushing to mentally block the adversary within. Most people are just fine. That's what I want again... to be just fine.
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