Today sucked.

My last post was at noon today. I ate some leftover dinner, which consisted of crock pot chicken, mushroom soup, spices and rice noodles, and with it I decided to make a medicinal marijuana hot chocolate.

Yesterday I bought a resealable peppermint mocha packet. It says it’s a single serving, but since I’m sensitive to every medication on the planet, I took it easy. I used one tablespoon of the mocha mix in 8oz of heated goat milk, mixed with a tablespoon of Trader Joe’s Sipping Chocolate.
I sipped on the chocolate drink – no immediate results. I sipped until the drink got cold – still no results.

The pain began to ramp up from 3 to 4 and then to 6 on the pain scale. I said screw it and drank down the rest of the no longer hot chocolate in three gulps.

Still nothing.

The pain reached intermittently to 9 on the pain scale, and I broke. I began sobbing from the pain.
In all, it had to be over an hour from first ingestion to feeling any effect of the food grade medical marijuana. At that point, I began to feel light headed. Still crying, I asked my husband very nicely to please scrub out the tub so I could take a hot bath.
The marijuana kicked in while I soaked in the tub. There were a lot of little clots. I bled and bled and tried to just let it all come out. I stared at the soapy water in the tub, and went on some sort of hippie line of thought of interconnectedness, which took me into beautiful mental landscapes and memories of the scenery in the movie Avatar. Once I was able to snap out of my daze, I realised that what I wanted today was pain relief, and what I got instead was a fracking drug trip, and slight dissociation from the pain. But no actual relief. For some reason, the anal pain had returned with a vengeance today, and I wondered if it was due to menstrual blood getting back there and inflaming everything. But no matter what I did, clean myself, soak in warm water – the anal pain stayed on course, stinging and gnawing right along with the uterine pain.

After about half an hour in the tub, I slowly stood up and began drying off. Of course, my period got heavier. I just let it happen. Dried off the best I could, got a new cloth pad on and got dressed.
I applied some Tucks to my asshole and still the pain did not desist.

I paced the house, wondering what to do next for the uterine and anal pain. I sobbed again in the kitchen, I tried to lay on the couch, and then I was in bed, crying from the pain. I tried acupressure as often as I could, and I fear I’ve left bruises on my body from clutching the points for so long.
I told my husband that I didn’t want to be on a stinking drug trip, with sensitive hearing and landscapes of Avatar, being all hippie about how everything is connected to everything else – if I wanted all that, I’d have had a drug party and invited friends over. I wanted pain relief, goddammit. I told my husband I could give him a very detailed report of the pain from a semi-detached point of view, and that’s not what I wanted. I didn’t want dissociation – I wanted NO PAIN.

My poor husband. He’s never done any drugs. He was at a loss for what to do. He felt so helpless and I could see how it frustrated him. He asked me a lot of questions about the trip I was on, about what I could feel and see and hear and what was difficult for me. Hearing is accented; children playing outside, and birds and the sound of the BART train a couple of miles away – were all crisp and clear in my ears, even through closed windows. Cars passing our house sounded muffled in that poorly mixed early 1970s movie sort of way.

My husband fed me 800mg Advil gel caps, and now I had to wait half an hour for those to kick in.
I think it was 25-30 minutes for the Advil to kick in, and the cramps started to calm down.

The medical marijuana made me very tired, and I was glad to be able to get some sleep since the cramps were abating. I slept for nearly two hours, and when I woke, it was dark outside. I had the craziest dreams/nightmares from the marijuana. I cannot remember them, but it was like fever dreams.

An entire day, fighting the pain, on a bad drug trip, caused by ONE TABLESPOON out of a packet intended to be ingested completely in one sitting. The high finally wore off around 7pm. I had a seven hour bad drug trip with no pain relief and minimal dissociation from said pain. DO NOT WANT.

My husband wants me to try the butter again. I’m not touching the medical marijuana again today. If the pain ramps up again, I’m hitting the Tylenol 3. At least I know the effects from that. At least I can split a pill and know what I’m getting into. At least I can still function on the stuff.

Tired on so many levels

I got about 7 hours of sleep before having to wake for the day because the pain forced me out of bed.

I stood groggily in the bathroom, staring in the mirror, trying to figure out if I should take Tylenol 3 with Advil, or eat some more medicated butter with Advil. The pain rose to a 7 on the pain scale.

I remembered eating just a few slivers of the medicated butter on a gluten-free waffle last night. The effects took 20 minutes or longer to kick in, and then I was pain-free for about an hour to an hour and a half. Then the pain returned, but was not an alarming pain. I went to bed with heating pads. Within half an hour, I was awake again and severely stoned. What?!? How did that happen? I was dizzy and slightly nauseous due to being so stoned. Was it the fact that I’d been on half a Tylenol 3 before eating the medicated butter – did it prolong the high? It just seemed like a new wave of stoned was washing over me – after I had gone to bed. Kinda scary.
When my husband crawled into bed around 3am, I woke suddenly and was dizzy and discombobulated. I cried out. I had no idea what was happening. I was on the verge of hallucinating.
My sleep remained broken and full of strange dreams all night.

This is why I stood in the bathroom this morning, contemplating which drug to medicate with. I know the Tylenol 3 like the back of my hand. The medicated butter is new and scary for me, especially since the dosing is completely up to me to figure out, and is not so cut and dry as pill splitting.

TMI FOLLOWS:

When the pain got to a 7 this morning, I also got the urge to defecate. Usually this is bad news – whenever there is pressure on the bowels or the bladder, the endometriosis pain becomes excruciating. While having a movement, I sometimes yell or cry out in pain, and sometimes I get quite nauseated from the pain, but once I’ve had the movement, the pain subsides, leaving me exhausted physically and emotionally. It does not matter if I have a soft stool, or diarrhea – if the bowels are agitated, it can get real bad for me, pain-wise. Of course, if I’m constipated, forget it, I’ll be on the verge of passing out from the pain.
Thankfully this morning the pain did not reach nauseating levels, and I was not constipated. Thankfully the pain abated immediately after the movement, and I’ve been about a 3 on the pain scale for the past hour.

That means I have delayed taking any medication, but the question still faces me – Tylenol 3 or medicated butter?

Today is Sunday. It is only my second day of full on menses and pain. I estimate I’ll be missing work tomorrow, based on years of experience as to how long my cycle lasts and how many days of bleeding and pain go with it.
That means I should not feel guilty over whatever medication I choose to take today, and if it leaves me too groggy to go to work in the morning, it’s okay, because I am taking care of myself today and in the here and now while the pain is present.
I spent too many years pushing myself to go to work despite still being in a lot of pain, or being exceedingly groggy from the pain and the medication to treat it. When my body tells me it is ready to return, and that could be tomorrow, then I will return. If it is not ready to return, then I will take the day off. No more of dad’s words in my head, telling me to “crawl in to work if you have to“. No more bullshit in my head from the Celestine Prophesy/The Secret/What The Bleep? cultists out there who say that I’ve manifested my own illness by way of pessimistic thinking or as they call it “Law of Attraction” (I’ve ranted about this in the past).

I’m tired.

I’m tired because of my broken sleep last night. I’m tired of proving myself to the entire world that I really am doing the best I can to treat the illness as it exists in my own meatsack. I’m tired of going through the pain every month, and the side effects of various treatments and medications. I’m tired of losing sunny days to the pain (this is Day 2 of not being able to go out into the warm sunshine and bicycle or go for a walk or run around town with my husband in a care-free manner, enjoying the weekend).

I’m currently at a 3 on the pain scale, with intermittent ass-shooting pain, which takes me up to a 7 on the pain scale. Need more breakfast food. Will report back later.

Three days early, aren’t I lucky.

My last post was Thursday, January 28th, and I began spotting on Friday, January 29th, so I guess I can’t even go by the mucous colouring. Last month it was about 48 hours from the time the mucous turned until menses arrived. This month, it was 16 hours. Well, I dunno though. I was spotting pretty lightly all day – is that day one of menses? Or is Saturday, when the spotting turned to flow the first day of menses?

Traditionally for me, I have held that my first day is when the spotting gets heavier and turns to actual flow. That would make Saturday the first day – which is still three days earlier than my calendar predicted, but right on for what my gut feeling had predicted as early as last Tuesday.

Friday after lunch, around 2pm, I took 2 Harmonizing The Moon Chinese herbal pills, and by 3pm I was a nervous chatterbox, ready to have a manic fit. I had a doctor appointment at 4:30pm and when my pulse was taken it was 88. For me, that is high.

By Friday night I was sobbing, and again Saturday morning I was a crying basketcase because it was 60°F and the sun was out…and I couldn’t be out in it to enjoy it. Again. I told my husband I would count how many warm sunny days I miss in one year to further let people know how this illness impacts my life.

This manic-depressive stuff is very unusual for me. The last time I acted this way was when I was on Yasmin in February 2007.

Saturday morning, the pain was bad enough that I was doing the pressure points and breathing exercises. Around 2:30pm, I took 600mg Advil, half a Tylenol 3, and two Harmonizing pills. No relief half an hour later, and then finally the Tylenol 3 kicked in, but the pain didn’t seem to want to go away. I decided not to take any more Tylenol 3, and instead asked if we could go to a medical marijuana dispensary. My husband was fine with this, so he drove me there.

This is the first time I’ve ever been to a dispensary. I had read what it would be like to enter one, and so I was not surprised by the sight when we drove up to the heavily barbed wire compound in Berkeley. Nor was I surprised about having to show my ID no less than 3 times to enter the front door and each room of the dispensary. I filled out paperwork, added my husband as my caregiver, took a tour, and asked a ton of questions about the various edibles. We came away with some butter and a single serving packet of peppermint mocha mix.

I didn’t want to try out my new groceries right away, since i was still stoned on Tylenol 3, and didn’t know if I’d have any adverse reactions if I also ate something with medical marijuana in it. I’m so extraordinarily sensitive to even over the counter medications, I didn’t want to take any chances. I mean, I’m the one who hallucinates on Tagamet for chrissakes. Check it out, hallucination is listed under rare side effects for that product.
Lucky me. :/

At 7:30pm, I had minimal pain and I took 2 more Harmonizing herbal pills. The pain returned by 8:30pm and was roughly a 6 on the pain scale. I was at a friend’s house when the pain hit, and I stood up and paced for a few minutes, then spent the rest of the time rocking to and fro, trying to do subtle hip circles to work out the pain. It got up to a 7 and fortunately, around 11pm, people began to leave, so I had an out as well. Honestly I didn’t want to leave earlier cuz I was enjoying being around friends. But when everyone suddenly got up to go, I went with.

When I got home, I made a gluten-free waffle and spread some medical butter on it. I believe it was about half an hour before I felt like I could say I was feeling the effects. I didn’t use much butter at all – I didn’t want to chance taking in too much on the first try.

The awesome thing is that my cramps disappeared. Gone.
Not “I was dissociated from the pain” – the cramps effing went away. How awesome is that?
I smiled at my husband and said in a stoned voice, “If I’ve been suffering all these years, and all it took was for me to ingest marijuana by way of food to stop the pain, I’m gonna be real mad.”

Sadly, an hour and a half later, the cramps returned. I’d say I’m about a 3.5 on the pain scale.
Also, about 2 hours after initial ingestion, the high continues to ebb and flow, feeling much stronger at times, making me dizzy.
So the thing is, I need to of course not be at work while on the butter, and I need to keep using as little an amount as I did tonight (I’d say it was a teaspoon or less that I used on the waffle), and I’d need to do this every hour and a half to couple of hours to remain pain-free…but I can’t because the high lasts much longer than the pain relief. I’d get too high and therefore sick on the medication. This presents a problem. Something to think about now is all…

Lastly, my fingers have been splitting open and bleeding, again. I started remembering the 2 Chinese herbal pills twice a day in earnest in the past week. I told my acupuncturist to ask her provider if there is any chance that gluten or yeast could be in the ingredients for both types of pills she has prescribed me.
I am wary of the Chinese herbal pills, and I may decide to stop taking it altogether.

Phew. Let’s hope this post makes sense when I wake up. It’s the middle of the night and I’m still stoned silly.
Current pain is a 2 on the scale.
Sweet.

Worsening fatigue and emotional state

Today for some reason I’ve wanted to cry all day. I’m super emotional about everything. It’s as though my heart is broken. At one point, just before my lunch break at work, I was talking with my co-teacher/head teacher and she kept correcting my language, telling me to stop using adjectives. She said the director of the school always tells her to watch how she phrases things so as not to create a legal issue. This teacher would like me to follow the director’s advice, also.

All I had said was that I needed to know which recepticle to use as the wash bowl, so I could wash the easel. This teacher has in the past told me not to use the cleaning bucket, because according to her, it contains trace amount of bird feces, because we wash the lunch tables with it, and the birds are always landing on the tables and leaving their feces there.
She told me earlier this week not to use the dirty water bowl that the children use to empty water from their work jobs into, because that could create cross contamination if there is bird feces or some other type of contamination on the easel. She says it could be transferred from the easel to the bowl. She refuses to acknowledge that I wash the bowl thoroughly with hot soapy water before and after using the bowl for cleaning.
So I wanted to know WHAT to use to do the washing, said since she did not like my choice of vessels thus far.

She went on a long explanation about proper use of language and avoidance of adjectives, saying she does not lIKE or DISLIKE anything, and that it’s a matter of keeping the children safe and respecting the parents’ POTENTIAL wishes, and they MIGHT wish that their children were in an environment where they were not at risk of contaminated materials.

I about burst into tears. I just wanted her to tell me WHICH FRACKING BOWL TO USE, since she always has a problem (oh wait another adjective – she’ll say she has no problems at all) with what I’m choosing to wash the classroom stuff with.
The discussion ended without her telling me what vessel to use, so I chose the dirty water bowl again and hoped she’d not correct me and tell me to put the bowl down again like she did the other day. As I washed the easel, I noted aloud how tired I was. My co-worker told me that she read or heard of an interesting study whereby if people declare they are for example tired, that they will BECOME tired. I tried to not sound angry but told her firmly that it’s not a self-fulfilling prophecy kind of thing – it’s a FACT that I am tired, and it is part of my health condition, which renders me bedridden every month, and by the way I may not be at work on Monday because of it, FYI.

She didn’t talk to me anymore after that. She is in that camp of people who think that even after 23 years of living with a chronic incurable painful condition such as endometriosis, that I somehow manifested this illness upon myself by pessimistic thinking.

I want you to know that that camp of people will be the first to get the pain transference device strapped to their heads once it’s invented. Ever see the movie Strange Days? The transference device I’m thinking of is like the ‘SQUID’ recordings used in that movie: “experiences recorded directly from the cerebral cortex which when played back through a MiniDisc-like device allow a user to experience all recorded sensory inputs as if actually doing it themselves” –wikipedia.

Anyway, the conversations with this teacher is what nearly broke me for the rest of the day. I literally had tears in my eyes for the rest of my shift, even on my lunch break. I got out of work, came home and had some hot chocolate (Trader Joe’s Sipping Chocolate, mixed with goat milk), and wanted badly to have a complete emotional breakdown. However, I had to be at my acupuncture appointment within an hour, so i could not have my breakdown.

I want to let you know that it is not the teacher who CAUSED my emotional state. I was already fragile to begin with. She is not willfully malicious or mean in any way towards me, ever. My emotional state has nothing to do with her personally. I’m just exceedingly fragile today.

During the acupuncture appointment, the doctor stuck me in the bottom of the right foot and it stung really badly. I yelped and it wouldn’t stop stinging, so she removed the needle. It continued to sting. She said that’s the point for something dealing with my blood. Wish I could remember.
I had needles in my feet, legs, pelvis and head. I laid there for 20 mins, then she came back and removed the needles. I turned over. She put needles in my lower and upper back. These needles – every single one of them – were so painful going in that I yelped and/or cried out, voice shaky and near tears. The one in the lower right side i think it was – that one stung for several seconds, but I rode it out and it abated.
Afterwards, we talked about the herbal supplements I’ve been taking. I am wondering if the ginseng, dong quai and licorice are causing my emotional issues. I’m wondering if the mania I experienced two weeks ago is also related to these ingredients. I have in the past gotten hypoglycemic and irritable on those noted herbs. The acupuncturist said she’d think on it and do further research. I agreed to continue taking the supplements until my next menstrual cycle at the end of February, just so we can note developing patterns.

When I got out of the acupuncture session, I felt a little less like bawling. The back pain I’ve had on and off all week, and especially painful today, returned right away. It always feels like I’ve pulled a muscle or several muscles in my back every month right before my period. I hate that.
Oh and my vaginal mucus began turning tonight. The last time it did that was on January 5 and two days later I got my period. George is due February 1 but I’m thinking he’ll be here Friday or Saturday.

And on that note, just after 9pm, I’m taking 600mg Advil gel caps and going to bed.

The pre-doom special

Last night I went to bed around 9:30pm. Tonight I’m doing the same. I’ve been thoroughly exhausted for the past two days. I’m bloating like crazy. My lower legs and ankles are swollen. I get worn out and breathe laboriously just by walking or having to get up.

I take my vitamins and I’ve upped my Chinese herbal supplements to 2 pills twice daily. I got anxiety so bad around 3:30pm today that I thought I’d have a panic attack at work. I had to do my breathing exercises and it almost didn’t help. I had to fight through it with anxiety, racing heart and feeling of being suffocated. I left work at 4pm. I wonder if it’s PMS and I’m just stressed out by the data collecting I have to do on the job – I’m just an assistant – my head teacher should be doing all of this. She should have the long day, not me. Ugh. Give me the damned title and pay already, people.
So perhaps it was just that. But part of me is now wondering if it’s the herbs. I’ll talk to my acupuncturist tomorrow. I’ve got to ask her questions about how to deal with bloating and fatigue, as well.

I’ve been feeling low dull pain with the bloating since Monday. On Saturday and Sunday is when the right side ovarian stabby started – at least that abated by Monday.

I took 400mg Advil gel caps before bed last night – doing the same thing tonight.

On a bright note, my husband’s gym is offering a special so I signed up today after work. Half of what he pays per month, plus a month free, plus a free session with a fitness trainer. I told the trainer what my physical restrictions are, about my illness and what my goals are – we are to meet after this upcoming round of doom is over.
We are also experiencing a break in the rain – I think it’s rained constantly for a week and a half, I forget. Today there was no rain. Tomorrow is supposed to be dry, too, and then the rain returns on Friday. Imagine my mixed feelings at this – it’s bad timing for my health, cuz I’m winded just getting up out of a chair right now, and my body feels like lead. I want to bicycle but if I bicycle the one mile to work in the morning, I’ll have used up too many spoons to get through the workday, which involves literally running after children on the playground, both to entertain them and to get to them before or right after injury happens. There’s also the lunchtime cleanup, which involves sweeping around and under 3 picnic tables. It may sound easy to some but operating a broomstick really hurts my back and sides and abdomen a few days before menses. Then I’d have to bicycle back home – if I made it back at all without collapsing, I’d surely collapse for the night as soon as I got home from work. So bicycling this week is out of the question – not enough spoons.

I’ve been doing slow stretches of my arms up as far as I can reach and holding it, then tilting to one side, then the other – very slowly. My back feels like I’ve pulled the muscles. This is ‘normal’ and happens every single month, right before menses, as my body tries to fold in on itself like a pillbug. I’ve also been doing the large hip circles I always do to try to manage the pain. Sometimes it’s really painful to begin working the hips, but after awhile things loosen up and I really do feel better. So it is part of my pain management process.

Gah. It’s nearly 10pm now. I really need to be sleeping but I really needed to provide an update on the premenstrual madness.

Goodnight!

More and more, I just can’t keep up appearances

Today I am super tired, have mega pms cravings, and low dull uterine and ovarian cramping. Doom is due by Sunday at the latest.

Yesterday I allowed myself to feel slighted by some stranger on IRC. I felt like she gave me a bunch of shit about my pain issues, and basically wrote me off because I have not yet seen a reproductive endocrinologist, nor will I try further hormonal treatment for my pain issues.

The whole conversation on IRC started with medical marijuana questions – I wanted to know if Prop 215 had worked out well for anyone locally. I did get some good advice, but this one person stuck in my craw.
She asked what my pain issues are. I told her I suffer from stage III endometriosis. What happened next is what often happens – people ask me the same tired old questions – “have you tried this for the pain?” YES. “have you tried that remedy?” YES. “have you had surgery?” YES.

Honestly, people, do you really think I would live with this illness for 23 years and NOT try all the basic shit in the books, first, then surgery, then go from there?

Then she asked if I’d seen a reproductive endocrinologist. I told her no, I’ve not been to one, yet. This is where she got all huffy with me and basically wrote me off as some ignorant wretch.
I looked back through my records – I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.
The person on IRC seemed like she was telling me that I obviously didn’t try hard enough and therefore I must be happy to be in pain all the time.
I told this person that I’ve seen other specialists in the past 12 months, but she stopped talking to me.

I wanted to yell at her and say IF I HAD THE INSTRUCTION MANUAL TO MY BODY, I’D HAVE READ AND IMPLEMENTED IT.

Why did I feel so slighted by someone I don’t even know?

The answer is that I’m in defensive mode with the world at large over my illness – all the time.

People range from well-meaning to outright abusive towards me with regards to my illness. The people in question range from absolute strangers online and on the street to co-workers, friends and family. All. the. time.

I can tell the same people what I’ve tried and what I’ve not tried, what I’ve been through with what treatment – several times – and still get the same questions asked again and again. This is precisely why I started blogging about my pain, the what I’ve tried, the doctors, the vitamins, the diet in general. I’m always repeating my story to people, and therefore I’m always defending my rationale for trying or not trying this or that treatment. Everybody’s got an opinion. Everybody thinks they know best. Hell, it seems like everybody thinks I must be a total fracking idiot, living with endometriosis and not doing a damned thing about it.

Even presenting all this information on my website goes unnoticed it seems. People still ask me the same tired old questions. I copy and paste a url to them. They don’t care. People just want me to shut the hell up and be healed already. They want me to quit my whining. They want me to stop bringing them down.

This same type of write-off I get from people extends to my doctors and specialists. They all get tired of me after awhile and cast me off. That’s why I’ve seen 15 doctors in 9 years and am now on my 16th and counting. My current gynecologist lost her patience with me about a year ago because I wouldn’t get another cauterisation type laparoscopy by a different surgeon – I want an excision laparoscopy and I need to be sure of the doctor before I go and get the surgery. Also, I work very hard for miniscule money – I make $11/hr the expensive Bay Area of California, and I have a very expensive diet, no thanks to all of my damned food allergies. Also, I cannot take time off work just like that. I need 11 or more days off work to recover from surgery. It took 11 days and I was still in a heap of pain upon my return last time, and that was a desk job. I have a preschool job now. Also, there’s the co-pay. It cost me $1,500 out of pocket last time, but I was making $19/hour. I have different insurance now and it’s a different surgery that would be performed compared to last time. The co-pay could be much more. It doesn’t matter though – my gynecologist thinks I can easy peasy just take the time off work and get that “minor” surgery taken care of anytime! Oh and you know, I was not told about in advance, and did not ask for those hideous stretch marks I got from being inflated with carbon dioxide for the laparoscopy.

She actually used phrasing suggesting I liked being in pain because I would not schedule a second surgery.

She actually gave me an ultimatum of January 2010 to find pain management and other specialists, because she will not be refilling my Tylenol 3 prescription anymore.

Goodbye, Dr. Lisa Bernard-Pearl. You worked so well for me in the beginning, but in the end you turned out to be just as mean as the rest of them, casting me aside, giving up on me. You gave up on me. You threw me away.

On January 6, 2010, I had an apointment to see a pain management doctor. I was on my way there when traffic got snarled. I phoned to say I would be a few minutes late, and the receptionist told me to just turn around and go home, because the doctor would not see late patients. I told her I left work on time, but there was unforseen construction holding up traffic. She asked me if I had the new patient paperwork. I asked her WHAT PAPERWORK.
Apparently paperwork is usually snail mailed to new patients, but a particular receptionist at that office emailed it to me. I told the person on the phone I never got it.
I came back home in tears and looked through my email. I found the email – it had been sent in an unprofessional manner – it looked like spam because it had no subject line, was from a stranger’s first name only, and contained an attachment. OF COURSE I never opened it. I called the office back to complain about the woman, and they did apologise. However, there was no seeing that doctor again – it was her last day in that office – she’s moving to an office 50 miles north of me. They told me another doctor in that office would call me but that never happened. In the meantime, I’ve been too angry to call that office back, and too apathetic to find another pain management specialist this month.

However, on January 21 I saw gynecologist Dr. Streitfeld, on January 23 I saw Dr. Ellis, and on January 29 I will see Dr. Fredian. Today I put in a request to see Dr. David Adamson (referred by Dr. Streitfeld), who is a reproductive endocrinologist, and I also put in a request to see Dr. Grace Eng – the same endocrinologist I tried to see last year around this time.

All of this costs money. Most of this takes time off work. Both are difficult for me, because I miss enough work as it is by being bedridden, no workplace I’ve ever been with wants me to also miss more work on top of that for doctor visits, let alone recurring surgeries.

You know, the record on repeat is enough to make me spit. Really. I was sick of it three years ago. I was tired of it five years ago.
Just go back through my entire journal. I’ve got diary entries dating to the 1980s. Have a good read. And don’t offer me any more insight, suggestions or advice about endometriosis and treatment options unless I ask for it.

Postscript ~
I felt damned near homicidal tonight. I spent all night writing this blog entry. I stepped away to do laundry and grocery shopping, and ported over some more really old diary entries. I took half a Tylenol 3 to medicate against the rage. Rage is the best way to describe how I felt all day today and still feel to a degree even now while drugged.

Fighting spirit continues to waver

Yesterday I saw Dr. Roger Stephen Ellis, also known as the Pot Doc. – January 2010. My husband’s friend referred me to Dr. Ellis on January 16 as we both sat talking about our pain issues at a mutual friend’s birthday gathering.
She swears by this doctor, who advocates for medical marijuana patients. She says he’s the only doctor the California Medical Board certifies as above-board with his paperwork and patients. I guess this is supposed to make me feel like the local police and the federal Drug Enforcement Administration (DEA) would leave me alone if I started using marijuana.

Anyway, a week later, on January 23, I had an appointment with Dr. Ellis, and he took one look at my surgery report and diagnoses and wrote me a prescription for medical marijuana, good for six months. I have to provide ongoing documentation which states I still suffer from the pain, and in six months I can re-up on a year-to-year basis. It’s one more thing I will try officially, on the record, and note whether or not it has worked for my chronic pain. I have yet to get the prescription filled at a local pot club.

I would like to note for the record that I have in the past self-medicated with marijuana during my period, and both times, the cramps got worse until I was crying in agony. The first self-medication was sometime in 1997 or 1998 with street-bought pot. The second self-medication was sometime in 2004 or 2005 with medical-grade pot that a friend had. Both times, I smoked it.

Someone told me on January 24 that marijuana use elevates estrogen levels in the body. Endometriosis feeds off of estrogen, so that could be why my pain got worse. I found one study which corroborates this, but I need to read up on the issue a lot more.

The fighting spirit is MIA

I’m feeling bad for myself today.

I saw a new GYN today – his name is Dr. Hank Streitfeld and he was referred to me by two of my co-workers. We went over my surgery report, all the doctors I’ve seen for endo, my diet and herbal remedies, other specialists I’ve seen, my expectations, and what he does, can do and can’t do.

Basically, he thinks both cauterisation type laparoscopy and excision laparoscopy has its place. He prefers Lupron as his drug of choice for fighting endometriosis. He agrees with me that I can’t be on hormones or Lupron to treat the endometriosis; he is able to cite enough studies where women are as sensitive as me to drug therapies and went cuckoo. He agrees with me to steer clear of the Nezhat brothers. He had good things to say about Dr. Andrew Cook and Dr. David Redwine, and he also mentioned a Dr. David Adamson who also does excision surgery – said I should definitely see both him and Cook to get all my questions answered.

Then he told me that due to the lack of pain relief from surgery, I should consider that I might have a condition called adenomyosis. I’ve seen the word mentioned in the endo forums, but never researched it. According to the Mayo Clinic website, “Women who have had prior uterine surgery, such as a C-section or fibroid removal, are at greater risk of adenomyosis.” Well does laparoscopy count as prior uterine surgery? Did I have adenomyosis before the laparoscopy or do I have it as a result of it? Did it just come on naturally in addition to the endometriosis?
Dr. Streitfeld said that adenomyosis may be detectable on an MRI – so that’s something I can consider – cuz the only other ‘real’ diagnosis of adenomyosis comes through removal of the uterus and dissecting it to find whether adenomyosis is present.

Dr. Streitfeld was every bit the cool doctor my co-workers said he would be. I liked his no bullshit demeanor, his relaxed and calm style and his staff. I’ll totally recommend him to people. I’m just sad he couldn’t be the doctor for what I need.

I’m at T-minus 11 days until the next bedridden. Even though I got good referrals out of Dr. Streitfeld, it’s just the idea that I’m still going doctor to doctor, trying to find help for the debilitating endometriosis, and on top of it, now I’m told I should consider the idea that I might have adenomyosis on top of the endometriosis. And so the fighting spirit is drained. I’m crying like a scared child; “Mama, I don’t wanna go to that bad place again!!! Why can’t anybody help me mama?”

One week post menses – pain

The weekend after I was feeling better, my husband and I were intimate twice. This resulted in pain for me both during and after, lasting for a day and a half. There was some debris and moderate intermittent cramping.

I wanted to note it here. I forgot what my diet was like that weekend. I know that on the mental front, I was quite manic and it seemed out of the blue. Mercury retrograde was ending, and there was a New Moon. I want to say I was having Irish Tea (caffinated) once daily at lunchtime. I forget if I was eating a lot of chocolate or sweets.

And then of course I have lately been of the mindset that food and drink don’t even need to be recorded because the pain will be there no matter what.

So there it is, recorded – dyspaneuria continues for me.

Monday – feeling better

On January 11, 2010, I returned to work, but I feared another round of pain would be on the way. I stepped cautiously through the day, and to my glee, there was never any further debilitating pain! I was moderately fatigued, which for me is normal coming off my period. I took it easy when I got home from work.

Start the clock – T minus about 22 days til next bedridden.

Now I need to switch acupuncture herbal meds and start taking the ‘Unicorn Pearl’ for the next few weeks.

Did I ever give a breakdown of the current acupuncture meds I’m on? Let’s do that now.

The meds are from a business called Giovanni Maciocia Chinese Medicine UK, and my acupuncturist goes through one of their distributors to get said herbal remedies. I take the “Women’s Treasure” blends.

Unicorn Pearl contains:
Radix Ginseng
Radix Angelicae Sinensis
Radix Rehmanniae
Semen Cuscutae
Radix Dipsaci
Radix Morindae Officinalis
Rhizoma Atractylodis Macrocephalae
Cortex Eucommiae
Fructus Lych Chinensis
Rhizoma Polygonati
Poria Cocos
Rhizoma Cyperi
Herba Leonori
Radix Glycyrrhizae Prep.

Harmonizing The Moon, which I am to take the week before and during menses, contains:
Rhizoma Corydalis
Semen Coicis Lachrymajobi
Radix Paeoniae Rubrae
Sclerotium Poria Cocos
Rhizoma Curcumae Zedoariae
Rhizoma Spargani
Herba Lycopi
Fructus Liquidambaris
Radix Notoginseng
Ramulus Cinnamomi Cassiae
Radix Angelicae Sinensis
Radix Ligustici Chuanxiong
Cortex Phellodendri
Semen Cuscutae
Radix Rubiae Qian
Radix Rehmanniae
Cortex Moutan Radicus

Out of all of the ingredients above, four matched ingredients I took in 2007 under another acupuncturist’s care:

Radix Angelicae Sinensis
Radix Peaoniae Rubra
Radix Rehmanniae
Radix Glycyrrhizae

(if not all of the links to the herbs are there, I apologise – I was too tired to find each one. It is my goal to return to this page to finish linking the herbs).