Lupron Journal

Research for Endometriosis and New Treatments

2008-09-25T08:35:00.002-04:00

Hi, all. I received an email recently from a researcher who is involved in a project regarding endometriosis and treatment options. I thought I would post their message here for anyone that would like to participate.

In other news, I finally feel as though the Lupron is out of my body in terms of my energy levels. I walk a mile a day. I did read some disturbing stats regarding neuropathy-like effects from Lupron and I am wondering if their is connection.

Message below:
Dear Reader, Neurocrine Biosciences (a San Diego biotechnology company) is conducting an endometriosis patient research survey as a part of our ongoing efforts to understand the disease of endometriosis and the needs of women suffering from its debilitating symptoms. The first 50 qualified participants will receive a $25 honoraria for participating. The survey should take approximately 30 minutes to complete. The information you provide will develop our understanding of the symptoms of endometriosis, the process leading to your diagnosis, and the available treatment options. At the same time, this information will guide decisions on the clinical development of an investigational drug having the potential to treat the symptoms of endometriosis. Your responses are completely confidential, and all results will be used at the aggregate level and only for research purposes. If you are interested in participating, please send an e-mail to endosurvey@neurocrine.com, and we will contact you directly to fill out a screener to determine your eligibility. We appreciate your willingness to share your experience and the important guidance you will provide to our efforts to develop a better treatment alternative. Kind Regards from Neurocrine Biosciences.

May 27 and thereafter: Cycling off

2008-06-04T16:36:00.004-04:00

SIDE EFFECTS FOR THESE DAYS: left groin pain (pain rating 5); side pain (2); tired; problems with mobility due to the groin pain; problem with finding a comfortable way to sleep because of the groin pain.

As far as I can tell, I have cycled off Lupron. In the past week, I have had no headaches, maybe one hot flash. Except for being tired and the familiar pain, I'm back to what life was before I started the shots. I'm thankful that cycling off has not been bad considering what so many others went through.

I wish everyone else well on their journey with Lupron. I know it has the capacity to help some people, though I was not one of them. I hope the chronology of my own treatment can serve as a benchmark, regardless of the success of your treatment.

That being said, if you are a classical singer, I would never recommend this treatment to you. You are at great risk of changing your voice and the downtime is severe. It was nearly impossible to perform and my entire voice shifted more than by fach and category. I'm still waiting to see what the long term effects are vocally. Again, I specify that this warning would be for classical singers. MT/Broadway, pop, etc use mikes and would not be as affected.

May 20 - May 26: Losing another one

2008-05-26T13:21:00.006-04:00

SIDE EFFECTS FOR THESE DAYS: left groin pain (pain rating 5); lower back pain (4); side pain (2); variable headaches (2-7); swollen uterus; very tired; lack of focus; increased hot flashes/night sweats; problems with sleep.

My body wasn't too happy with going back on Lo Estrin yet, so I stopped it. My uterus began to swell (or my ovaries) like a tight ball. After a couple of days, it subsided after quitting Lo-Estrin. The headaches are no longer a daily occurrence, but I am not past them either; I got saddled with another migraine on Saturday night. Energy levels are better, but I still require 12 hours of sleep. Yet, each day I am finding I am able to do more things, even if I require significant rest after doing them.

I have spoken a little that I lost my mom many years ago. It was to leukemia. At the time, we had no clues as to why and were only left with the daunting task of surviving the grief once she was gone. Many of the questions were left unresolved until a few years ago. Her first cousin (ML) was diagnosed with the same form of leukemia. They were very close in age, were brought up as siblings a couple of doors down from one another for several years.

What we learned by the second diagnosis was that it was environmental. My mom and her cousin were exposed to something in their neighborhood that left their mitochondria irreversibly altered.

We also learned that, though ML fought the disease 20 years later with newer and better drugs/techniques, nothing could be done for either of them. ML died Friday night, surviving leukemia for a shorter period than my Mom.

There are many points to be made here. As related to those that struggle with reproductive illnesses, we increasingly point the finger at Dioxin, a pesticide linked to all kinds of illnesses (reproductive and otherwise). Companies profit from this chemical at the expense of our health. Draw your own lessons from that one.

Strangely, I feel some resolution with my mom's death. As I explained to my younger sister who was too young to remember the entire odyssey with my mom's illness, against the odds, lack of contemporary medicine and studies, she lasted four years. ML lasted far fewer. With this type of leukemia, there was little that could be done for either of them.

As I think of both of these women, I consider their indelible mark on me. My mom's link is obvious. I am part of her. She raised me as best she could.

ML had an artist's heart and I have her to thank for exposing me to the arts. She had studied ballet and her love for the arts never died. When her artistic aspirations didn't work out, she volunteered for the ballet in her city for 20+ years. She didn't live close to where we grew up, but we visited. Each visit was full of the arts. I'll never forget the time she got me access to the stage before a show and I stood there under the lights looking out into an empty house. It's a memory that comes back to me each time I step out onto the stage. And I feel them both there: my mom who never knew the career I would have and her cousin that lit the spark.

May 19: The lesser of the evils

2008-05-20T09:38:00.003-04:00

SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (2); headaches (2); very tired; lack of focus; increased hot flashes/night sweats; problems with sleep.

My energy levels are better though I find that I tire easily. I at least have bursts of energy in which I can get things done. Driving is much easier. Running a vacuum cleaner and other household chores are now possible. I don't know if I was turning a corner on the Lupron, if it is the Lo-Estrin, or if it the cycling off, but day-to-day things are getting better. I'm getting back to pre-Lupron state, which I never thought was a blessing before, but it sure looks like a better place to be now.

My throat is very swollen today and my voice hates me. Good thing there is no concert today! I'm trying to do as little phonating as possible. My larynx feels like a Mac truck in there.

The groin pain and lack of sleep is what it is: nothing new.

May 18: Lupron and HRT Reimbursement

2008-05-19T11:39:00.003-04:00

SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (5); headaches (4); exhaustion; lack of focus; increased hot flashes/night sweats; problems with sleep.

The performance was fine though between the dress and the performance I went through 30 minutes of chaos in my lower register (chords not approximating). I don't know if it was the Fioricet that threw my voice off (the headaches started coming on so I had to take a half dose to keep it at bay) or what. Fioricet has caffeine, which is tough on the chords. After steaming, it worked itself out, thankfully.

I wanted to share a rebate for Lupron and HRT I found online. I saw this on someone else's blog and thought I would get the word out here as well. https://www.endofacts.com/register/rebate.aspx

This will be especially helpful for those of you who have to pay out-of-pocket. This drug is not cheap. I am hoping it can help cover my partial payment as well.

May 17: Bone tired

2008-05-18T12:41:00.003-04:00

SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; increased hot flashes/night sweats; problems with sleep.

I had a rehearsal today and was so tired. All I wanted to do before and after was to sleep. The piece I am doing is physically taxing, but isn't especially long. It probably would not feel quite so taxing if I weren't so tired otherwise, though it does deal with the extremes in range.

I've noticed an increase in hot flashes, sometimes several an hour. When I am sleeping something else is waking me and then about 30-60 second the hot flash sets in. I know some women feel that the actually sweating wakes them. For me, it is whatever is happening prior... a bad dream, some other chemical trigger, that is doing the waking.

I started back on the Lo Estrin on Friday, so we will see how it all goes. Hoping for the best.

May 16: Back in the saddle

2008-05-17T00:54:00.004-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

Today I cooked a four-course meal for the first time in months. I've missed cooking. It's something I enjoyed for years and this past year, cooking has been markedly absent. It was nice to have a little energy to stand and create.

I slept horribly again last night, with vivid nightmares, interrupted sleep, etc. Groin pain is worse at night, as it always has been. It's very difficult to find a comfortable position to sleep in.

My doc advised me to start my bcp again so I am back to the Lo-Estrin. Should be interesting to see what happens as my body takes time to process through the Lupron and the intake of the Lo-Estrin.

May 15: Aging beyond my years

2008-05-15T21:57:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

I am so tired I am about to fall asleep this second. I cannot believe how exhausted I continue to be. That being said, I made it to the grocery store and actually carried about 25 lbs of groceries by myself. This is the first time in weeks and weeks I have been able to do that.

I watched myself on TV tonight and could not believe how much I have changed. I looked old, frail and emaciated - not in the anorexic sense but in a malnourished sense. I know they shot me early in the morning, but still... I looked awful.

Last night I barely slept. I woke at 4.30a and worked; I napped later. Now I find I can barely stay awake so perhaps I will sleep.

May 14: Not out of the woods

2008-05-14T23:44:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

If yesterday taught me anything, it's that the side effects (whether it be estrogen loss or Lupron) can come back at any given time, regardless of the number of manageable days you have. Yesterday was a beast. The pain in my head was close to unbearable.

I woke up early and tired this morning, with a headache. I made it through the interview no problem. I was just exhausted. I had wanted to crash as soon as I got home, but it didn't happen. Hoping for sleep tonight.

May 13: I know my pulse because I can feel it in my head

2008-05-13T16:52:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin pain (pain rating 6); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

I'll write more later but right now I have one of the worst migraines going on. And I have a rehearsal in two hours. Lovely.

=============
Tonight was a living hell for a couple of hours. My headache started in the morning and I was hoping it would go away. By the afternoon, it was excruciating. Any note I would try to sing left me reeling. This with a rehearsal looming large. The work that I am performing this weekend is very high and very loud. It takes a lot of strength and it is a bit of a work out. In desperation, I took a half dosage of the Fioricet. It cut the headache to manageable and I wasn't a complete space cadet, though a flubbed a couple of passages. I was very tired by the end.

Tomorrow I have to be up early for a TV interview. I just want to sleep.

May 12: Where is my brain?

2008-05-12T23:49:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 6); lower back pain (4); side pain (5); fleeting, needle-like pain in shins; exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

I am very forgetful today. For two hours, I could not think of my nephew's name. Today was early-ish day in any case and I am generally fuzzy/tired on those days, but this was worse. And I am having a hard time finding a position to sleep in comfortably again.

Wednesday would be my third shot. But I am not going down that road any more. Now I'll be writing about cycling off, which i hope won't be quite so bad.

May 11: Tired

2008-05-12T06:54:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 6); lower back pain (4); fleeting needle-like pain in shoulder/neck; exhaustion; lack of focus; hot flashes/night sweats; problems with sleep; nightmares.

I was so tired. I had to wake up early for a Sunday appointment an hour away. The appointment was draining so I would imagine much of my exhaustion was from that. I was so drained that I had no appetite afterwards, no energy, no focus and went back to sleep as soon as I could.

I also went to bed, again, early in the evening.

May 10: Old Faithful

2008-05-11T01:38:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); ovarian pain (4); lower back pain (4); leg pain (3); pain on left side (2); hot flashes/night sweats; problems with sleep; nightmares.

I practiced today. I'm about a week out from a regional premiere and realized how far behind I am. But my voice, if it holds, will be fine. It's in a good place right now for this work.

I slept for a long time last night, but was interrupted by half a dozen nightmares. These dreams seem so vivid and true. Some of them in recent days are about people I haven't thought about in years and others involve my current cast of characters. All the nightmares involve my worst fears... I guess all nightmares do. They are just so incredibly vivid. Though I have always remembered my dreams, these seem so real that when I wake I can barely separate them from reality. Strange.

I did not get to walk today, but I managed to carry some things to the car and the dumpster. I did some housework.

I think this week has been better, all in all, but I keep going back to the same question. Did the Lupron help what it was originally supposed to help? The answer is no. It's my understanding that I would have seen improvement by now, yet even as I type, I feel the familiar knife-like pain in my groin.

May 9: Functional and Pensive

2008-05-09T23:57:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); ovarian pain (4); lower back pain (4); leg pain (3); pain on right side (2); lower ab muscles weak; hot flashes/night sweats; problems with sleep.

I drove today. In a major city. And got very lost.

None of that I can attribute to estrogen loss. Rather, I blame Google Maps.

But I was able to carry on a nice conversation for two hours and made it back home. Tonight I was able to walk 4 blocks to a favorite restaurant. The walk back was easier... after drinking a lot of wine. :-)

I'm very tired though.

I received a nice mention in the daily paper regarding the Yom HaShoah service I did last week, which was completely unexpected. Very sweet.

Turn that 180 degrees and I find myself regarding some paths that I feel like are coming to an end. There's some sadness, regrets ...wondering what's next.

Beyond a full night's sleep, I'm not sure.

May 8: Triggers

2008-05-09T02:11:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); ovarian pain (4); lower back pain (4); leg pain (2); pain on right side (2); chest pain (5); tingling in fingers; lower ab muscles weak; hot flashes/night sweats; problems with sleep; nightmares; exhaustion.

I fell asleep twice this afternoon/evening from being exhausted, but I did get out to walk 20 blocks between rain storms.

My sleep is being interrupted by vivid nightmares combined with chest pain and numbness/tingling in my right hand. I've got no answers on that one! I know how some people feel as though the hot flashes wake them, for me it seems as though the trigger to the hot flash is waking me... whatever that trigger is. After I wake, I noticed I have about a minute before the hot flash hits. Or at least it seemed in the last 24 hours.

2008-05-08T00:19:00.004-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); ovarian pain (4); lower back pain (4); leg pain (3); pain on right side (2); lower ab muscles weak; hot flashes/night sweats; problems with sleep.

Ironically, the problems today are mostly the problems I sought help for in the beginning... this damn groin pain, the lack of sleep, the reduced mobility.

Today was not so bad with everything else. I walked 11 blocks west and 5 blocks north, both ways. I did get very tired trying to push a shopping cart today.

I'm exhausted right now while listening to a Rent soundtrack. How funny to me I've never seen this show. I'm in my own little classical world, which is a world apart from Broadway.

Sorry that I am not very verbose tonight. I have to wake up very early tomorrow.

May 6: Promenade

2008-05-07T00:10:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 4); ovarian pain (4); lower back pain (2); leg pain (3); pain on right side (4); lower ab muscles weak; hot flashes/night sweats; problems with sleep.

Today was one of my better days. What started out as a rotten day because of my mood, improved once I forced myself to take a walk to get some fresh produce. If I can just keep my head from pounding and my groin from hurting enough, these short, slow walks are possible and obviously beneficial.

May 5: What are my choices

2008-05-06T00:23:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 4); ovarian pain (2); lower back pain (4); leg pain (5); pain on right side (4); lower ab muscles weak; hot flashes/night sweats; problems with sleep; hoarseness.

My headaches started coming back today so I headed it off with the Fioricet. I halved the dosage to see what would happen; could it stave off the headache and then I remain functional? I did okay. It didn't completely take away the headache and I wasn't as dizzy. So this is better. I'm hoping it's something I can fall back on if needed.

The weather was okay today where I am so I got out and walked a little. I'm still having a lot of pain my torso and down my left leg into the shin. It's not easy to walk; I don't always feel up to it, but if I can walk down the block, it's better than nothing.

I forgot to mention last night at the concert, I forgot everyone's names. These are people I know well and for several years. Strange.

I really don't think I can tolerate the Lupron for a third shot. Unless something dramatically changes over the next week, I'm going to cycle off. The journey has been to costly... personally, financially, professionally. I feel as though it has impacted very aspect of my life. I don't think it has helped anything and made everything much worse. Very frustrating!

May 4: More

2008-05-05T00:34:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 6); ovarian pain (6); lower back pain (6); leg pain (5); lower ab muscles weak; hot flashes/night sweats; problems with sleep; hoarseness.

Today the groin pain and the ovarian pain was as bad as it has ever been. It did seem to respond to a high dose of Ibuprofen, but I felt shaky. I don't understand why the Lupron is not at least taking care of that.

On the bright side, once I got the pain under control, I was able to take a walk for about half a mile and listen to a concert. The concert was harder than the walk. I'm going to try really hard to walk a little everyday and try to build some strength. My appetite is horrible though. I don't have any fresh unprocessed food and anything heavy makes me feel ill.

I am so tired right now.

May 3: Test

2008-05-03T23:52:00.004-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); pain on sides (2); lower back pain (6); leg pain (5); lower ab muscles weak; hot flashes/night sweats; problems with sleep; hoarseness.

Today was a big test: could I walk 1/2 miles to a bus stop; could I drive myself to an airport 2 1/2 hours away; could I drag all my luggage by myself.

Yes.

I am so lucky today ended up being okay, despite feeling really horrible last night and not sleeping well. Normally, this travel schedule would have been no big deal. I've done this a million times and many more rigorous schedules. However, pre-Lupron days are not my present Lupron reality. It took a lot of concentration to drive so far. It took a lot of strength to hoist relatively light bags onto buses, shuttles and luggage compartments above my head (I'm 5'4").

All that being said, today I was functional.

I didn't have the headaches. I did have a lot of groin, leg and back pain, which made it challenging to walk... or at least not walk like a complete gimp. I swear it look like I have a peg leg (not there's anything wrong with it).

And how old am I???

35 going on 99.

May 2: Eyes bigger than my stomach

2008-05-02T22:19:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2 ramping now to 6); left groin pain (pain rating 4); pain on sides (6); lower back pain (6); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; problems with sleep; hoarseness; lack of focus.

So I bit off more than I could chew tonight. I often cantor Shabbat services (Reform and Conservative). I never think of it as a performance because that's not what it is. I'm giving voice to a congregation as we collect our prayers, our Psalms in song and then send them upward. Music is what takes our words to the next level... the emotional, the spiritual.

I've missed being able to cantor as much this season, especially at the shul around the corner from me. The group is a bit irreverent, a lot of fun and we regard each other with open arms and family.

But I wanted to do Yom HaShoah (Holocaust Day of Remembrance) and it happened to fall on Shabbat, which makes it very special. The music is not hard and I even asked for a mike, which normally I would never do. But I stood for such a long time. The longer I stood, the weaker I felt. My head started to pound. I began to be hoarse. Hot flashes, etc. This week, we didn't have accompaniment for the normal Shabbat tunes, only for the special music for Yom HaShoah. I was feeling very naked and so ill.

But the congregation got me through it with their genuine love and support. They were so happy to see me. Though I am lying here in bed now feeling like I was runover by a truck, I know in my heart that no one scrutinizes me there. We are there because the union of music and spirituality brings us together. In fact, it reminds us that there are so many things larger than ourselves.

May 1: What now?

2008-05-01T23:30:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; problems with sleep; lack of focus.

I noticed looking at last month around two weeks after the first shot there was a reprieve and I am wondering if I am in the same cycle. Today was pretty decent comparatively. Just wondering if the bad stuff will come back.

What I do know, though I thought it was diminishing, the groin pain has not gone. That was the whole reason I did this shot... as a diagnostic. I was told by a surgeon in Miami that I would have my answer after the flare. If the groin pain was because of the endometriosis that I have, the Lupron would make it go away. If it didn't, there is something else causing the problem.

My OBGYN thought it could be adenomyosis on top of the endometriosis.

Where do I go from here?

April 30: Yes and No

2008-05-01T00:59:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 6); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; blurred vision; lack of focus.

Today is not bad but the groin pain is still there, as is this bizarre ovulatory pain. I don't have much energy or focus, but I still perceive things as better than they had been in recent days. Though I still say I am worse off than before I started this drug.

Must sleep.

April 29: Don't know what you got 'till it's gone

2008-04-29T21:30:00.005-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 8); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; blurred vision; lack of focus.

I was so tired today. Last night I had some of the sharpest groin pains I have had in a long time. Not quite sure why that would be happening and I am still getting the sense that I am having ovulatory pain. That puzzles me because I thought by now that would be impossible. Am I not in menopause yet? Isn't my ovulation completely suppressed?

So many facets of this drug regimen I just don't understand. Other than the weakness and being very, very tired, today was not that bad. So I've had a few decent days strung together. Interestingly, I feel as though one doesn't truly know one's gifts until you've had them taken away. So when I have a decent day (which is still worse than the pre-Lupron days) I feel like celebrating! Woo-hoo!

Originally I was supposed to be out of town today but I've rescheduled travel for the weekend. I hope I am feeling up to it!

April 28: The Wisdom to Know the Difference

2008-04-28T22:41:00.004-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on sides (4); lower back pain (4); lower ab muscles weak; hot flashes/night sweats; weakness and tiredness; reduced mobility; blurred vision; lack of focus.

Today was not too bad in terms of pain though each day is a little like the other shoe dropping. Except what dropped today was my voice... about a third. Damn, I wish I could have sung today! (only other singers will recognize the importance of this, especially given what I sang yesterday)

In any case, I am grateful that I wasn't curled up and comatose yesterday. I think I forgot to mention how I couldn't remember names last night. A fourteen-year volunteer came up to me and I could not remember his name. Nor the underwriter for last night's concert. Ugh.

I was sad today, but it was more because of personal reasons than the drug. I don't know how often one is supposed to extend second chances, but I guess when they reach the double digits, that's probably plenty.

Tonight was to be a regional premiere that I had to postpone. I'm okay with it now... disappointed but okay. My next engagement is in about three weeks... another regional premiere. I'll try not to stress; as long as I am standing it shouldn't be too difficult in terms of where it lies in my voice. I have a lot of highly focused homework to do. That's where I am lacking.

I'm reminded of these words:

God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

April 27: I had a good day

2008-04-27T16:46:00.005-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 7); pain on sides (4); lower back pain (4); lower ab muscles weak; hot flashes/night sweats; weakness and tiredness; reduced mobility.

Just wanted to post this quickly and will fill in the rest later... the performance was fine. No headaches. Of course, I'm still having problems with the supported breath from the lower abs, but I was fine. I lost myself in the music. Isn't that the point?

Later....
From morning until about 6pm, I had a very good day. Perfect, since I sang early in the day. By 6pm, things started creeping in... headaches, blurred vision, intense groin pain and then pain that feel ovulatory (how is that possible since I am supposed to be in menopause?) I'm so thankul I made it through the really important part of the day. Now I can sleep.

April 26: I'm a guy

2008-04-26T17:41:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin pain (pain rating 3); pain on sides (4); lower back pain (6); lower ab muscles weak; hot flashes/night sweats; weakness and tiredness; reduced mobility; vivid dreams.

So maybe I should gone with the Danazol, as I am currently sitting here on a strong barbiturate buzz watching the NFL draft. I've always been a sports fanatic though I am a huge klutz. I'm a rabid ACC basketball fan, Braves fan and a NFL junkie. Watching the commercials and camera takes of these well-sculpted athletes just makes me want to go outside and pretend I could be a pro-bowl running back. (That's the Fioricet talking).

I'm coming out of my mood/funk. As usual, it lasted about ~three days, but I think the estrogen loss is making is more severe. Yesterday was awful... sad, despondent, inconsolable.

I think the groin pain is lessening... I think. The other night was bad but for the most part, I perceive that it is less. But at what cost? My voice? The rest of my body? My financial security (guess what - artists that don't work, don't get paid). I'm not even as functional as I was with just endometriosis, so is this really worth it? I've been out of the house twice in the last week.

Headaches today started from the moment I opened my eyes. I waited awhile to see if it would go away. No luck. Thus, the Fioricet, which is very effective. Just not very functional while on it.

That's it for right now. Hoping for the best for the performance tomorrow.

April 25: Tired

2008-04-26T00:30:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); pain on sides (4); lower back pain (6); lower ab muscles weak; hot flashes/night sweats; weakness and tiredness; reduced mobility; white noise in ears.

Just tired, down and sad today. That's all I have the energy to say right now.

April 24: The Door

2008-04-24T22:19:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 3); pain on sides (4); lower back pain (4); lower ab muscles weak; aching shins; hot flashes/night sweats; needle-like feeling in legs, face; weakness and tiredness; reduced mobility; white noise in ears; apathy.

Love the new pain in my shins. Wow! That was no fun.

I feel as though I am saying good bye to an old friend or maybe a couple of old friends.

1) My voice.
Once my constant companion, my passion, my raison d'être, I feel as though I am saying a very prolonged and painful good-bye... not too unlike saying farewell to my mom when she suffered with a terminal illness. I watched her slip away, struggle and then leave abruptly when we least expected. I've felt this day coming for two years... slipping away, me trying to recapture it again and now finding it's leaving on its own terms and schedule, not mine. Nor do I have the same spark about performing that I once had or the unbearable need to do so. I feel resignation.

2) Me.
I can think back to what I once was in the not so distant past... runner, cyclist, e-brainchild, musical prodigy. And now I see how things are this second. Me... lying on a couch most days. Me... barely able to walk into the kitchen. Me... forgetting everything. Who IS this person and what did you do with the other girl?

I'm so tired of things not working out, whether it's my health, my personal relationships, the people I trusted, my career.

I'm trying to find the door to open to get beyond this. I know it is there somewhere. I hope for something better on the other side.

April 23: Trying to Move Forward

2008-04-24T00:07:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 4); left groin pain (pain rating 3); pain on sides (4); lower back pain (4); lower ab muscles weak; hot flashes/night sweats; needle-like feeling in legs, face; extreme weakness and tiredness; white noise in ears.

I was tired all day today. I woke up early and then fell asleep later in the day for a few hours, but nothing diminished how tired and weak I feel. I believe that I read on someone else's blog that lack of estrogen causes the tiredness. Really? Do our hormones really have that much control of us?

I've always firmly believed that an important part of life was bettering ourselves through self-analysis and fixing what's broken. Otherwise, the same problems present themselves over and over again in our lives.

I hate feeling stagnant, in any regard. I want to move forward. I want to solve this and the other issues that I feel need to be solved so I can move on to the next challenge. If we don't move forward, what is life? What's the purpose? Just sitting in front of the TV and punching the time clock at work? I won't accept the status quo or that there is no answer to this condition or that there is no answer to everything else going on. There is always an answer. We just might not like it. But that's the point. Learn your lesson and move on.

Easy to say but hard to do when you are stuck in bed...

April 22: Living

2008-04-22T20:19:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 7); left groin pain (pain rating 3); pain on sides (7); lower back pain (7); lower ab muscles weak; hot flashes/night sweats; needle-like feeling in legs; weak; white noise in ears.

Today started out as no headache and then by 5pm it took over. Earlier in the day, I was having problems with mobility from the aches in my body. And when I taught piano, I was hoarse and without energy. Then the migraines started. So I took some Fioricet and though I am on that barbiturate buzz, I'm still sitting up sans headache.

Today has been odd. I've been trying to work and practice, but was derailed by uncovering some disturbing news. I won't go into it here, but this is life. And how does one still deal with the normal bumps in the road when the status quo is a pot hole. When I have the answer, I will let you know.

I have a HUGE performance this weekend. I'm praying for clarity and health. It's out of my hands and I recognize that too. As we say in German, was kann man tun?

March 21: Okey-dokey

2008-04-21T23:28:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 1); pain on sides (7); lower back pain (7); lower ab muscles weak; hot flashes/night sweats; needle-like feeling in legs; better energy during the day but exhausted by night.

Today was not too bad in terms of energy level. The headaches were at a minimum, but the pain in my lower back and sides was much worse. Oddly, because my energy was so much better, it wasn't as troubling to me. I still managed to get a lot done though I am tiring sooner. I would have to say this is a step in the right direction. I'm hoping it holds through the weekend.

I am noticing the hot flashes during the day are much more frequent, several times an hour. It still doesn't bother me perhaps because I've always had a low temperature. This is the first time I can remember not being constantly cold.

I am drifting though so I should head to bed. Funny that I used to stay up until 3a or 4a. That's not yet returned.

April 20: Treading Water

2008-04-21T00:29:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 3); pain on sides (5); lower back pain (6); lower ab muscles weak; white noise in ears; mental confusion; hot flashes/night sweats; needle-like feeling in legs; exhausted.

I am ridiculously behind on a number of projects, even with canceling next Monday's concert. With so few hours where I can focus (meaning not dealing with side effects from one drug or another), I get so little done. Which brings up a point for women with families and/or jobs that do not allow telecommuting: just how does one get through this and be functional?

The lower back pain was more present today... a stabbing pain on the right side. It was fleeting but came back often. It's the kind of pain that startles you and makes you catch your breath.

I'm also worried about (just as some of you that have written me) the estrogen surge on the other end of this treatment. Does that happen to everyone if our bodies aren't ready to go into menopause (which would mean nearly all of us)?

To echo a brave gal that wrote me lately, there has to be a better way.

April 19: Weak

2008-04-19T23:01:00.001-04:00

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.

April 18: Surviving in the new normal

2008-04-19T00:46:00.004-04:00

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.

April 17: Discriminating Evidence

2008-04-17T20:20:00.004-04:00

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.

April 16: A fog descends

2008-04-16T22:39:00.003-04:00

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?

April 15: Round two

2008-04-15T19:14:00.004-04:00

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.

April 14: The other shoe

2008-04-15T01:00:00.005-04:00

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?

April 13: Closer to fine

2008-04-13T23:22:00.002-04:00

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.

April 12: Training Wheels

2008-04-12T21:58:00.002-04:00

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.

April 11: Getting by?

2008-04-11T22:05:00.004-04:00

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."

April 10: The Verdict

2008-04-10T22:33:00.003-04:00

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.

April 9: Questions

2008-04-09T22:06:00.003-04:00

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.

April 08: That other dirty word - depression

2008-04-08T18:56:00.003-04:00

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?"

April 7: Uncle

2008-04-07T18:12:00.003-04:00

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.

April 6: Sanctuary

2008-04-06T19:42:00.005-04:00

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.

April 5: Some Like It Hot

2008-04-05T20:12:00.003-04:00

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

April 4: Bargaining with God

2008-04-04T20:49:00.004-04:00

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?

April 3: Paradigm Shift

2008-04-03T23:57:00.008-04:00

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?

April 2: The Veneer

2008-04-02T19:07:00.006-04:00

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.

April 1: Living Life

2008-04-02T00:05:00.004-04:00

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.

March 31: Bone Tired

2008-04-01T00:34:00.003-04:00

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.

March 30: Treading Water

2008-03-30T22:17:00.002-04:00

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.

March 29: These effing headaches

2008-03-29T12:40:00.003-04:00

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...

March 28: Mixed Bag

2008-03-29T09:31:00.002-04:00

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.

March 27: Pushing the envelope

2008-03-28T03:30:00.002-04:00

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.

March 26: Reprieve Extended?

2008-03-27T00:30:00.002-04:00

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.

March 25: Reprieve

2008-03-25T22:10:00.002-04:00

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.

March 24: Navigating what has to be done

2008-03-24T20:51:00.003-04:00

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.

March 23: The Quest for Normalcy

2008-03-23T17:52:00.004-04:00

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.

March 22, 2008: The Pain Game

2008-03-22T22:51:00.002-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 4); pain points that are no longer connected (pain rating 7): left groin, left side transverse colon meridian; hot flashes during evening and night only; heart racing; left leg pain; knee pain(pain rating 4); bloatedness; intense, fleeting skin pain/tenderness (pain rating 8).

There's a science to pain management. You have to stay ahead of the curve, which I did not do as well today. If I take Darvocet at night which fights pain via acetaminophen and narcotic, then I can take 3.2g of Ibuprofen the rest of the time. This seems to be the most effective in terms of functionality, ability to work, and self-sustainability.

Today, I got behind the game. I woke up with my skin on either side feeling as though it were severely bruised. I couldn't touch those areas without feeling as though I were poking myself with a red-hot iron. This effect was fleeting. The groin pain and side pain were intense and left me with greatly compromised mobility. The headaches came and went, but were more under control. I did not feel the pinching of the facial muscles as I had in recent days.

My side and my groin were very pained, moreso than usual. But there were good times today too. I finished three major marketing campaigns and was well on my way on the fourth. My focus was better. Hopefully, that will continue into tomorrow if I stay on medicinal schedule.

March 21, 2008: Specialized Medicine

2008-03-21T15:10:00.003-04:00

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); pain points that are no longer connected (pain rating 7): left groin, left side transverse colon meridian; hot flashes during evening and night only; heart racing; left leg pain; diminished hearing by "white noise"; bloatedness.

Over the past several days, I've noticed that side effects are less intense in the morning and increase over the course of the day. I'm not sure if that's because the Darvocet (100-650) still lingers from overnight use or if there is a different reason. I forgot to mention that I initially started on a 2400mg (400 6xd) of Ibuprofen. I now understand I can ramp up to 3g as long as I am cautious about the effects on my stomach.

While some other pains have subsided, there are two spots that are highly concentrated today: the left groin and then that point on my left side. The headaches are not so bad today though I still get that pinched feeling on the left side of my face, as if the end points of my face were drawing together. The hoarseness is diminished today. The white noise of blood rushing in my ears is still there.

One of the big questions in my mind before taking this drug was how functional would I be. If I had a job that required lifting or a lot of physical movement (for example, a courier), I would not be able to work. If I had a sedentary job that required little movement, how functional would I be? If it entailed talking, that would be difficult. Programming, writing code, writing paragraphs is doable but takes longer and with more concentration. As for the performing aspect of my career, that is currently impossible. I'm also worried about the hormonal effects this drug and this condition could have on my voice. However, I'm trying not to let that be my focus.

My frustrations with this journey have been dealing with a medical system that seems overly specialized. While my problems of recent years seem to be reproductive, I've found that many doctors are so highly trained and focused on a specific area, that they have no idea how to look or treat the whole patient. And sometimes the specialization is so acute, that they lapse in how to treat something, which in my opinion, does fit in their ken. Case in point, when I had surgery for cervical cancer, the groin pain (which I have been attributing to endometriosis) was already there and grew worse post-surgery. The surgial OBGYN's advice was to ignore it (I think she did a great job with the surgery, btw). Not only was endometriosis never discussed, she never ordered any kind of ultrasound as a further diagnostic. All this in spite of me being very descriptive about the cycles of pain. It wasn't until later and with a different doctor that we discovered a cystic ovary and then, in surgery, the endometriosis.

While as patients we can never take a back seat to owning what our medical care is, I would like to think my doctors have a better understanding of my body than I do. After all, they are the ones that went to medical school; I did not. Yet, I find all too often unless I do research and learn what questions to ask, they don't go the extra mile either. All I can claim is a far-removed minor in Chemistry and vague training as a Pharm tech. Surely they must be able to make better judgements than I can. One would think...

March 20, 2008: Pain is like spicy food

2008-03-20T14:12:00.005-04:00

SIDE EFFECTS FOR THIS DAY: headaches (responsive only to combination of Darvocet and when ibuprofen is used synergistically with Dramamine - pain rating 6); pain points that are no longer connected (pain rating 5): left groin, left ovary, left side transverse colon meridian, left kidney, front left below rib cage; hot flashes now also during the day (fewer); lessened spinal pain with focal point between shoulder blades (pain rating 3); heart racing; left leg pain; vertigo; bloatedness.

I'll try to add numerical ratings to the pain points (0 being least severe and 10 being most).

Though I have been resisting use of narcotics as a pain management technique, it does help with the headaches. Plus, using dramamine with ibuprofen increases its efficacy. I would have to say that the headaches are what is most troublesome and what renders me least able to focus. As the day wore on yesterday, it got so severe that I could feel the left side of my face flinching and drawing up. It was hard to keep my left eye open. The pain left side of the crown, went down the back of my neck and into my shoulder (all on the left side). My right side, thus far, remains unaffected.

The vertigo is new and it happened several times yesterday while I was trying to drive. The headaches also give the sensation of low-level current running through the skin. I no longer feel the skin as skin, more like an electrical conduit, and then the musculature underneath, which is very separate. The blood rushes in my ears like white noise and I begin lose hearing. I even began to see specks in my vision. I mused that my brother, who has severe schizophrenia, and I would make quite a pair.

I attempted to get the nurse to call in something for me (this is a different nurse than the one who gave me the shot). This nurse, who obviously missed her Nurse Ratched casting call, was dismissive. She even fought with me when I reminded her that I requested something non-narcotic (twice) and she was irritated that she had gone to the "trouble" of calling in Vicodin. Last time I checked she has a job because people need her help. Hmmm... she didn't get the memo. After two days of fighting with me, she suggested Excedrin and hung up. Nice.

After dealing with chronic pain for many years now, I equate it to eating spicy food. Everyone has a certain tolerance and you can build on that tolerance once you are aquainted with a certain level. I can function to certain degree with pain that I am used to. The new pains take time. Like an anatomical dance, a new pain registers and my mind/body rushes to block it. It adjusts and I counter. On it goes as best I can. All in an attempt for normalcy. Whatever that is.

This morning was better because I was still on the lingering effects of Darvocet. Yet even as I write, I feel the pinched snarl trying to etch itself across my face.

March 19, 2008

2008-03-19T09:01:00.005-04:00

SIDE EFFECTS FOR THIS DAY: intense headaches (non-responsive to ibuprofen); pain that goes from left groin to left ovary (maybe a little higher) wraps back to left kidney and wraps forward to just below rib cage; hot flashes now also during the day; spinal pain with focal points between shoulder blades; left knee pain; left leg pain.

This entry includes a little more about what happened throughout yesterday, as well as what I am noticing today.

Yesterday was a bear. Let me speak a little bit about this spinal pain. It has focal points that are dully there at a constant buzz. Then suddenly it hits you in a concentrated point between the shoulder blades... lasts for about 10 seconds. It's a pain that makes you want to cry because you have no warning and you just keep telling yourself it will go away without knowing if it will. It's a stunning pain.

The headaches really bite. It's not the kind of headache that's behind the eyes. This emanates from the crown of the head and goes to the hairline. When it starts throbbing, someone might as well be hammering your head. You try to breathe through it to reduce your heart rate.

This pain point on my left side (I wish I knew more about anatomy) is in the same meridian as the lowest point of transverse colon, lower than the spleen and higher than the ovary. That seems to be a particular point of pain.

I actually slept last night, miracle of miracles, without waking up once. Though the pain did not seem responsive to Ibuprofen, when I switched to Darvocet late last night, I got some sleep.

Today, I wake with a headache (no surprise there). This knee pain is new. There is now a line of pain that goes from the left groin, travels down the leg, and into the knee. Today is slightly less painful than yesterday, maybe because the Darvocet hasn't completely worn off. I am hoping my doctor can call in something non-narcotic for the headaches today.

Interesting that all of this is staying on the left side, which is exactly where all the problems have been. I cannot imagine what this would be like if this were covering my whole body.

Better try to get some work done...

March 18, 2008

2008-03-18T10:22:00.002-04:00

SIDE EFFECTS: intense headaches (non-responsive to ibuprofen); pain that goes from left groin to left ovary (maybe a little higher) wraps back to left kidney and wraps forward to just below rib cage; hot flashes now also during the day; menstrual pain seems less today; spinal pain with focal points between shoulder blades and again at tail bone (more on left top corner of sacrum); heart racing; dizziness.

Obviously today is really ramping up so I am blogging early and may blog again tonight if things change or I feel up to it. Today is already hard. It's the first day where I feel that I might not be able to carry on a normal conversation with someone who doesn't know what is going on.

More history...
A few years ago I was diagnosed with a late-stage pre-cancer/ early stage cervical cancer. I was already having the groin pain (endo), but just thought it was a running injury (in my less painful days I was a not-so-great distance runner). After my surgery for the cervical cancer (I kept my cervix), the pain grew more intense. I was mostly afraid the cancer had spread. My doctor, who had been so brilliant with the cervical surgery, told me to ignore it. So I tried. At that time, the pain was cyclical and I did have some days that were pain free (hard to remember was those were like). My periods were awful, passing heavy clots and feeling very tired and fatigued.

Eventually, because of my travel schedule, I needed to see another doctor. When I mentioned all the pain I was in, he immediately ordered a transvaginal ultrasound. We found a moderately-sized cyst on the left ovary that appeared as though it were torquing. When we did the laparoscopy, the endometriosis was discovered. We have attributed the pain to that ever since.

Until recently, I never knew that endometriosis could also be part of an immuno response illness. I was recently talking to another doctor (I was pretty afraid after I read all the side effects listed on http://www.askapatient.com/viewrating.asp?drug=19010&name=LUPRON). This doctor, a friend of a friend, is an oncological surgical OBGYN. This means when he goes into surgery, he is dealing with more than just reproductive organs because the cancer has advanced. When I described my pain symptoms, not all of them follow the typical endometriosis pattern. There is no doubt that I have endometriosis, but it can also be asymptomatic. He thought I might be having other problems and recommended that I do Lupron as a diagnostic. If the pain goes away (after these initial flares), it's the endometriosis causing the pain. If it doesn't go away, then it's something else. The other opinions I have received thus far are a mass growing in the wrong place, something benign, something more dangerous or Lupus (as the overall condition).

After researching Lupus and considering my entire health history, this is a strong possibility (one I'm not too thrilled about). I've had a history of strep, scarlet fever, bronchitis, pneumonia, photo sensitivity, back pain, blisters inside my mouth, Raynaud's coloration and a number of ailments that have caused high fevers. I do not have the arthritis or the shoulder pain they describe, so I am not 100% sure. Not something I am exactly wishing for.

In the beginning... 3/13 through 3/17/08

2008-03-17T21:45:00.001-04:00

Because it took me a several days to come up with the idea to blog my daily experience, my first post is not a single-day entry.

March 13, 2008
SIDE EFFECTS FOR THIS DAY: NONE

Lupron has to be shipped (at least in my state with my insurance) from a company called Pharmacy Solutions in IL. In fact, when my doctor first suggested Lupron two months ago and I initially said "yes," it was Pharmacy Solutions that called me out of the blue asking for sensitive information. I didn't know I was going to receive a call that sounded so strange without them being able to verify who they are. So with Lupron, I now call this distributor who then ships it to my doctor. Apparently it's a controlled substance, not in the narcotic sense, but in a different way.

So I had to wait for it to come in, which it did late in the day. I scoot over to my doctor's and weigh in at 112 lbs. It would seem to me that since I try to keep my weight down, my body wouldn't produce the estrogen that's causing the endometriosis to grow. In fact, when my doctor was re-reviewing what the likely side effects are, we discovered I had been having hot flashes already since I was 31. All this time I thought I was running fevers that were breaking in the middle of the night. The middle-aged nurse laughed when I said that. Still, if I have been having perimenopausal symptoms for all this time, why is my body still fighting me? I thought this was supposed to go away as the estrogen decreases.

For those taking the shot, it comes prepackaged with its own needle. The nurse didn't like this too much, as I guess she would have preferred to use a different size needle. It was relatively painless though.

If you would like to compare notes, my doctor advised me that I would experience a "flare" between the first and second shot, at least a week or two after the first shot. She told me I would experience some of the most severe pain and probably the worst period imaginable, but all of this would subside. A nurse that I spoke to that has a lot of experience administering this drug told me that people that are pretty sick before they take Lupron seem to be the sickest while they take it. I know that would be a hard pill to swallow for the men prescribed this treatment for advanced prostate cancer (my prayers are with you, btw).

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March 14, 2008
SIDE EFFECTS FOR THIS DAY: NONE

I do not notice anything re: the Lupron. I did have to go off of the Loestrin Fe to start this treatment so the twinges I am starting to feel I believe are related to that. I've been suppressing my periods for nearly two years so this should be interesting.

Just to fill in the blanks... my pain is always on the left side, particularly the left groin. At first it used to follow a cycle and there would be days where I did not have any pain. Now it is constant, like there is an ice pick in my groin. It's very hard to sleep at night and that's really been what's destroyed my coping mechanism. My doctor gave me Darvocet a couple of months ago (I was too afraid of the Vicodin). I doesn't stop the pain but it makes me sleepy.

In the pictures they look during the laparoscopic, the endometriosis did not look bad. There was plenty of healthy tissue, but I think it must have embedded. I estimate I have had endometriosis since 2002.
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March 15, 2008
SIDE EFFECTS FOR THIS DAY: Pain in shape of an "S", racing heart, night sweats

I have a lot of pain on the left side, but it feels more menstrual. It starts at the groin and goes underneath my ribs in something that feels like the shape of an "S". My heart is racing off and on today. I have night sweats, but I was having them before too.
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March 16, 2008
POSSIBLE SIDE EFFECTS FOR THIS DAY: Pain in shape of an "S", intense headaches, night sweats

The headaches start. At first it seems responsive to ibuprofen, but as the night wears on, I find I cannot bend over because of the intensity. I feel waves of heat from my torso to my shoulders. The waves feel like they are rippling. The menstrual sensations increase. My stomach isn't digesting food well. It feels like it is just sitting there and the outside of my stomach actual burns beneath my skin.
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March 17, 2008
SIDE EFFECTS FOR THIS DAY: Pain from groin to below ribs, severe headaches, night sweats

The headaches are close to a full blown migraine. Ibuprofen does nothing. Anytime I do something that makes my heart beat (picking up laundry, bending over, the least bit of exertion), my head throbs. Menstrual symptoms increase. I've been passing lining for a few days and now it seems to be more of a flow, though very little. Not really sure how my uterus could have anything in it if I have been blocking it all this time.