Saturday, March 22, 2008

March 22, 2008: The Pain Game

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.

Friday, March 21, 2008

March 21, 2008: Specialized Medicine

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...

Thursday, March 20, 2008

March 20, 2008: Pain is like spicy food

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.

Wednesday, March 19, 2008

March 19, 2008

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...

Tuesday, March 18, 2008

March 18, 2008

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.

Monday, March 17, 2008

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

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.