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...
Saturday, March 29, 2008
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.
Subscribe to:
Posts (Atom)