I Will Not Suffer In Silence

12:50pm:
A break in the debilitating pain overnight. Everything ceased, but for the throbbing low back pain. I was fine this morning, til a few minutes ago. This is the last attack – the ‘last gasp’ as my husband calls it – then I’m golden for a couple of weeks.

But right now, I’d rather be out of my body while this is happening. There’s a vice grip on my left ovary, and it’s twisting. The pain is causing moderate nausea.

1:49pm:
I just spent the past half hour doing an acupressure move as found in “Fibroid Tumors & Endometriosis Self Help Book” by Susan M. Lark. I added something to the position, though. I had tried it her way years ago, but in 2007 I found by adding a heating pad under the lower back while laying down increased the pain relief by a lot. So I did that again today when the pain had ramped up too quickly for me to get meds down.

 
Now I’m sitting straight up against the arm of the couch, cross-legged, with two heating pads behind me. I’m still waiting for all this to pass; there’s been very little blood with all this terrible pain. At least the drugs have kicked in for the dissociative part. Forgot to mention earlier – as soon as the pain hit, it immediately spiked, and I downed a whole Tylenol 3 and three Advil gel-caps. I swear, I shot it with some brandy, hoping it would help the drugs absorb into my bloodstream faster. Seems to have worked, though it’s speculation at this point. I got the idea from “The Oil-Protein Diet Cookbook”, by Johanna Budwig. In it, she mentions serving some champagne to the very ill person with their meal so that everything, including the patient’s meds, absorbs faster. Well I didn’t have any champagne, so I worked with what I had.

Today I woke with low-grade vaginal and pelvic cramping, and the need to keep ‘checking’ to see if I’m spotting, yet. I can’t handle the continual need to ‘check’, so I threw on a pad. But every time I go to the bathroom, I’m still ‘checking’. I swear, it’s either obsessive compulsive behaviour or it’s some instinctual female thing. Either way, it’s annoying as hell.

I set out to run my errands, but did not bicycle. I drove my car, instead. I’m too fatigued and the low-grade pelvic discomfort is making me whiney. While driving, I had to have one hand on my inner knee, firmly holding the acupressure point, to try to settle the cramps down.

I also began having hypoglycemic attacks starting on Saturday. I usually get hypoglycemic pretty easily right before my period. Waking up hypoglycemic, and having it made worse by drinking red raspberry tea, was also quite annoying.

George is due on Thursday, but at this rate, I say he’ll be here by Tuesday night.

I have this huge amount of info to share, but I’m not sure yet if it can be related to this journal and this health condition or not, so I’m leaving it off this journal for now. You can read all about it over at my other journal, though. Once I determine its relevancy to this journal, I’ll port the entries over, just like I did before…in order to create this blog.

2:07pm Edit: WTF is it with my bowels today? This is the third dump I’ve had to take. This is WAY out of the norm for me, since by nature I’m a constipated pain in the ass.
Is the endo break-dancing on my bowels or something? Is it my stress level because I’m STILL trying to finish all the homework I got from the teacher training summer intensive? What the hell, man…

Today when I got home from work, I noticed that lovely turn of colour that always happens to signal menses. Two hours later, as I arrived for my acupuncture appointment, the spotting began. It started off bright red, and is now dark brown.

The pain ramped up a bit, but the acupuncture appointment calmed that down. Four hours later, the pain is ramping up again. I popped 600mg Ibuprofen. I ran out of gel caps so it’ll take a bit to kick in. Meh. Thinking of whack-a-mole with the Tylenol 3.
Worried I’ll have to call in sick tomorrow.
Nerve pain radiating down from inflamed endo-ridden pelvis along the tops of my legs to my knees.

Gonna try to sleep.

Hopefully today was what my husband calls The Last Gasp – it’s when the pain and bleeding had gone away overnight, but returns with a vengeance the next day. That day was today.

The bleeding had gone away and hadn’t returned after my walk last night, even though the pain had returned a bit, and my legs were wobbly. I went to bed and slept soundly.

I woke this morning to horrible low back pain – enough to make me whimper. I got up around 8:30am and puttered around the house, doing slow stretches to try to loosen everything up.

I was dismayed to find that Chile had a 8.8 earthquake, which set off tsunami advisories and warnings throughout the Pacific region. While I was searching for live streaming info on the web about my region, as well as internet friends in Hawaii, my legs began to feel weak.

I got up off the couch and began massaging my lower back/kidneys. I did some more slow stretches. Then I needed to go to the bathroom. I had a bowel movement, which thankfully wasn’t too constipated.

I went to the kitchen and microwaved some leftover pancakes for breakfast. I poured some YoBaby apple yoghurt on top of the pancakes. I made some herbal tea from my acupuncturist, but I never got to drink it.

While I was eating the pancakes, the pain and bleeding resumed. All night and all morning, I had been dry – no bleeding, and no pelvic pain. I stood up and began doing slow large hip circles. I began breathing exercises.

The pain ramped up.

I started shoveling the food into my mouth so that I could take my medication. By the time I finished my food and was shoving a whole Tylenol 3 into my mouth, I was shaking from the pain. That’s about the time my husband woke up. I was pacing around the house and talking to him with a high pitch to my voice, teeth clenched. Within minutes, I was on my back on the couch, instructing my husband to help me with pressure points.
We couldn’t find the right points in the inner knees, so he tried my ankles, the bottom of my feet, and I held the points on my ears. The pressure seemed to help when my husband held the bottom of my feet. The points in my ears helped, too, but these didn’t help for very long. I told my husband I felt nauseous, but I needed more Tylenol 3. I took a half a pill on top of the whole pill I’d recently consumed.

The pain was so bad, but when I cried, tears didn’t come out. I went and sat on the toilet, and began moaning through gritted teeth. My eyes went vacant. At this point, I realised I’d hit a 9 on the pain scale.

I came back from the bathroom and tried to engage my husband in conversation to keep me from going mad from the pain. We talked about the tsunami warnings and other stuff. I yelped in pain pretty often, but carried on conversation so I wouldn’t go crazy. I had the heating pads on me, but I couldn’t get comfortable on the couch. I leaned over the arm of the couch with the heating pads on my lower back, until my calves felt like they were going to give out from the standing.

Finally, the drugs kicked in, and I became very tired. I settled onto the couch and my husband sat with me until I fell asleep. Then he went to work on stuff for his band, and eventually had to go to the studio to confer with the rest of the band on the tracks they’ve recorded.

I have spent the day continually drugged on Tylenol 3. The bleeding subsided again around 7pm, and so I decided to take a hot epsom salt bath. But first, I had to scrub out the tub, and I was still in pain, and my husband still wasn’t home.

This is a problem. But yet, I fought through the pain and scrubbed the damned tub, the shower doors and the shower walls, still streaked with husband’s hair dye. Once it was all clean, I was able to take a nice half-hour bath.

After the bath, the bleeding did not ramp up again, thankfully. I’m hoping today was the last of the cycle.

The pain has been really severe this cycle. Two things happened:
#1: Last Sunday night, I took a Monistat-1 treatment for a yeast infection caused by taking antibiotics for the sinus infection. By Monday morning my inner labia had swelled up really badly, and everything in that area burned. I showered and saw a doctor who examined me externally and said I’d have to ride it out. He suggested I soak in the tub. I came home that afternoon and told my husband I needed to soak in the tub, but did not have the energy to do a massive scrubbing of said tub.
Uh, apparently neither did he, and he didn’t care, because the tub did not get scrubbed. I did not ask him directly, “could you be a dear and scrub the tub for me?” – I just assumed he’d be a gent and see that I needed help and do this for me. But after nine years with this man, I should know better than that. I have to ask. Asking hurts my pride. It’s a cycle I need to break out of.

Late Monday afternoon, I began bleeding. At first I thought it was my period, but I had no cramps, and the bleeding and debris was light in flow and colour.

#2: I began taking the specially prepared tea from my acupuncturist – 1tsp up to three times a day. I saw her last Thursday, and she did treatment mainly for my sinus infection, but had also done some cupping on my lower back, which I’m convinced brought on some minor cramping Thursday night and into Friday.

Anyway, the light bleeding and debris lasted until Wednesday, when my actual period, complete with heavy bleeding, clotting and cramping started. I continued taking the tea.

I noticed that the pain this time around feels like a bladder infection. I stopped taking the tea last night and took 600mg ibuprofen on top of the Tylenol 3, and the bladder pain eased.

I resumed the tea this afternoon AFTER I had gone through a really bad spell of cramps this morning, and the bladder pain resumed. Could it be the cattail in the tea?

I cannot say for sure if it’s the tea or lingering side effects/damage from the Monistat.

I still feel gutted. I’m still getting sharp pelvic and bladder pains. I’m worried the Monistat did some damage. I’ll need to hire a new gynecologist this week, because Dr. Lisa Bernard-Pearl just retired from the practice this month, and I’ve not been able to see a new gyn, yet. I’ll just phone up anyone in that office and ask to be seen ASAP.

I keep feeling like today is Sunday. I’m so glad I have another day to recover before the work week begins again.

So far this weekend I missed a mostly sunny day today and two parties tonight because of the endometriosis.

Sour grapes – I didn’t wanna go out, anyway.

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.

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.

My husband woke with very little hangover, shockingly enough. I woke with the usual low back and neck pain. The bleeding had stopped again.

Around 12pm, we ate breakfast. I had made Trader Joe’s gluten-free pancakes, and my husband had cooked up some Trader Joe’s Smoked Chicken Apple Chardonnay sausages. Mmm, mmm good!

We puttered around the house, and around 2pm, I tried doing some laundry. Well, within half an hour, that put me back to square one with the pain and bleeding. I passed a lot of clots. It was around 2pm that I took 600mg Ibuprofen gel caps. An hour later, the pain was still bad, so I took 1/2 of a Tylenol 3, and I’d been doing acupressure to also try to stop the pain. I was still moving around cuz I’m stubborn. In fact, I took half an hour to 45 minute breaks here and there, but for the most part kept at housecleaning and such.

This evening, I stood for a couple of hours straight while sorting through pictures, before my upper back finally cried uncle and I stopped. The bleeding was diminishing, and stopped after a nice hot shower. I’ve been puttering about at the computer for the past hour to hour and a half.
I did get some weakness in the legs, and some low-level nausea, but the pain and bleeding has not returned, so I’m going to bed.

My gut tells me though that this is not the end of the cycle yet.