I Will Not Suffer In Silence

Thursday was a pain-free day! Yay!

On Friday, the pain returned. I had a lot of joint pain and back pain that day. By evening, my upper back was trying to seize up. By the time we left our friends’ house, my left upper arm was in constant spasm. As a matter of fact, it’s still in spasm.

Despite the low back and pelvic pain for much of the day (which was kicked up after being intimate, OF COURSE), I went walking all over town with my husband, and I refused to take pain medication in case I wanted to partake in any alcohol with friends (which I did later that evening).

I wondered if the resurgence in pain could be attributed to having been intimate with my husband, or if it was due to the impending rainfall, or if it was due to eating inflammatory foods, or all of the above. I felt guilty only for the inflammatory food ingestion, but only a little guilty. I have to LIVE my life, dammit.

When we got home last night, I thought I would need to go right to bed, because for some reason I was running a 99.9°F fever. I got all paranoid that someone I’d spent time with at two Thanksgiving gatherings the day before had gotten me sick. The flu is going around, and I’ve been trying to avoid the preschool crud for the past month as it is.

Despite the fever, I found I was restless. This is when the urge to CLEAN came over me again, as strongly as the urge had been on Wednesday night, when I was on my hands and knees wiping down baseboards in the kitchen and bathroom.

I was up til nearly 3am dusting furniture in the living room and rearranging toys and knick-knacks that we collect.

Part of the reason for this rearranging was that my husband has just purchased a new television and will be purchasing a new furniture stand for said television, so we needed to clear off the old entertainment center. I just had the energy in me to do it in the middle of the night last night, is all…

All the dust from the shelves had stirred up my allergies, so I took a full dose of Benadryl, hoping that it would serve to knock me out so I could finally get some rest.

Rest was not to be found! Though the good news is that my temperature went back down to normal.

I went to bed around 3am and still could not settle. And on top of it, I was freezing (thanks to premenstrual hormones). My entire body was tense, and my left arm was still in muscle spasm – not painful spasm mind you, but just a continual muscle twitch up near the shoulder.

Around 4am I could take it no longer, and I took my very last half pill of muscle relaxer I’d been saving. Finally, between the Benadryl and the muscle relaxer, I was able to get in a few hours of sleep. However, by 7:30am, my entire body was in full on clench mode again. I was sleeping with my fists balled up and my shoulders trying to touch. Even the heating pad didn’t dent the muscle tension.

I swear, at this point I prayed for horse tranquilizers.

Intermittently throughout the night, the pelvic pain also made itself known. It’s hard to know if the pain was solely because I’d been intimate with my husband the day before, or if it was solely because my period is due today, or if it’s the rainstorm that finally manifested overnight, or if it is a combination of all of the above.

Then there’s the fact that I’ve eaten nothing but inflammatory food and drink all weekend (pie, cookies, chocolate, nigori sweet sake, ham, steak, crab, butter, waffles with syrup, bacon, coffee with sugar and cream, cheetos!!).
Seriously, every last one of those items is on the inflammatory foods list and/or my forbidden foods list.

Today I will begin the round-the-clock Ibuprofen dosing. The pelvic pain is a low, droning ache. The low back pain is moderate, and is as a result kicking up some nausea. I’ve been doing slow stretches since last night for the pain.

My fever has not returned – so far so good! I really don’t like dealing with the endometriosis flareups while also being sick with a virus.

Outside, the rain is an on again, off again drizzle, with threatening-looking clouds. It’s a breezy 52°F (11°C).

And that’s the report – I was due today but so far nothing has started to flow, yet, aside from the pain of course.
I estimate I’m currently a 3.5 on the pain scale. And now it’s time to get up and move around…and take that ibuprofen.

The mid-cycle pain (mittelschmerz) started on November 16 and lasted through November 17.

On November 18, I was highly fatigued, and missed a friend’s concert. I was however able to get some teaching internship homework done that night, with my remaining spoons.

I got through work on November 19, and had to return to work on November 20 for the annual Fall Harvest Festival. Parents of the children who attend the school were put into groups and had a continent assigned to them. They all had to cook or bring foods found or popular to a particular continent. Each class did songs and dances relating to the continent/country they are studying. My class has been studying the Philippines in Asia, and so they counted from one to ten in Tagalog, sang Sampung mga daliri (see another cute rendition here), attempted a traditional dance, and sang I Am But A Small Voice (which went so well that they got wild applause).

After the Fall Harvest Festival, I needed downtime. I’d used up all my spoons, but I still wanted to go out dancing that night. I was pretty upset with my body for being so tired and achey. I was mad at my mind for being so moody and premenstrual.
I ended up staying home and joining a party of friends 2,500 miles away in my home state. They were having a party and so I joined them on Skype. They were all super drunk and having a fun time, so my husband and I decided to have elderflower fizz – it is elderflower liquor with champagne.

Well, the champagne hated me worse than I expected. I know I’m not supposed to have anything with yeast or sulfites, but this particular champagne must have been loaded with them. My stomach hadn’t hurt that bad or been that upset in a long time. What a shitty day overall it had turned out to be, health-wise and emotionally for me.

On Sunday, November 21, I went to a matinee with my husband and two of our friends – we saw Harry Potter and the Deathly Hallows. When I got home, I spent the rest of the evening once again catching up on teaching internship homework, and practicing my presentation for Monday.

Despite the weekend’s ups and downs, my husband and I were able to enjoy each other intimately. I note this because with endometriosis, it is often difficult to be intimate without grave pain. Twice a month is the norm – anything more than that and we’re jumping for joy. Such as it was this month – a veritable jumping for joy.

On Monday, November 22, I began to experience gnawing uterine cramps, and I knew this was the result of having been intimate with my husband over the weekend, because I am diagnosed with dyspareunia. Same thing happened which set off the mittelschmerz last week.
So on Monday, I had sharp stabbing pain on the right, then on the left, then radiating through the rectum as day/night progressed. That day, I took half a Tylenol 3 + 400mg Ibuprofen at lunchtime at work. Later, I ingested half a Tylenol 3 + 400mg Ibuprofen at dinner time, and then another half Tylenol 3 after dinner while at a friend’s house catching up on The Walking Dead.

When I got home, I experienced a painful bowel movement, which set off some nausea and shakes, and reminded me what I’ve known for years – that I have rectal involvement with endometriosis. I went to bed with a heating pad on my abdomen and lower back all night.

This morning, I woke nearly two hours before my alarm clock went off, and could not get back to sleep. I had only had five hours of sleep. Despite that, the pain level was very low, so I went to work. I did not bicycle to work because the pain has been too unpredictable, and it has also been raining.
While walking from my car to the workplace, I was so shaky that I thought I might collapse. I couldn’t tell if the shakiness was from nerves or from my body becoming so weak from fatigue and recent pain, but I forced myself to keep walking.
I got through the morning in a moderately agitated state, with frequent bouts of ‘warm flashes’ because my hormones are doing acrobatics inside of me.

The gnawing uterine cramps started up again at lunch hour. I experienced intermittent sharp stabbing pain on the right ovary. I took 600mg Ibuprofen at lunchtime at work, but the pain radiated to my rectum, which left me debilitated, shaky and nauseous. Right before I was to end my lunch break, my bowels went into a painful tizzy, and I spent many minutes on end at the toilet, trying not to vomit from the recto-vaginal pain as a painful bowel movement tried to happen. When I finally did defecate, there was blood in the stool. My anus did not hurt, so I wondered if it was from hemorrhoids or from endometriosis perforating my bowels. Either way, I was feeling really ill.

I can handle a certain amount of uterine pain more than I can handle the ovarian pain, but I cannot handle the recto-vaginal pain at all. May as well beat me senseless, it’s all the same.

When I got home from work today, I applied a heating pad to my bottom, half a muscle relaxer (Soma), .5mg Ativan, and a nap. I slept from around 3pm til nearly 8pm. I woke to urinate, then had cereal for dinner, which caused a new round of painful defecation – loose this time, with some more blood, and nausea. I took my temperature – it’s 99.4°F. But then it’s been 99 point something more often than not for months, if not over a year, now.

I began to wonder if I have an intestinal virus. I’d spent the better part of last week fighting off an upper respiratory tract infection. Preschoolers – they’ll kill ya.

Now I’m back in bed, journaling all of this before returning to sleep for the night.

Good night.

As is typical when I am suffering from endometriosis pain, I either do not want to eat, or I want only to eat cereals and grains.

On Tuesday, I had moderate nausea for much of the afternoon and into the evening. The nausea came and went on Wednesday. Even when I’m not experiencing nausea, I don’t really want to eat much when I’m experiencing pelvic pain. It doesn’t matter the level of pain.

This morning I had one bowl of “EnviroKidz” Peanut Butter Panda Puffs sweetened corn cereal, with some goat milk. I haven’t had goat milk to drink in awhile – I began craving it this week. I also ate a Trader Joe’s gluten free waffle with Earth Balance “butter” and some sunflower seed butter.

The pain started as I was getting ready for work, so I called in sick. One of my head teachers phoned me as I was texting her – she figured today would be the day I’d be out. She’s pretty on top of things.

I don’t think I ate again for awhile. I know that around 8:30am, I curled up in bed with the electric heating pad on my back. My husband put my two (unheated) rice pads on top of the electric pad to add desired pressure. I konked out and didn’t wake up until 9:45am.

I spent the day in a super tired pain haze, sitting in a wooden chair in the kitchen. The less I moved, the better. Ever since discovering back in July that the pain is lessened by sitting in this damned chair, I’ve made a point to keep the kitchen table clear so that I can use the laptop and also keep doing homework even when in pain.

I do not think it has a lot to do with my posture in the chair – I often find myself slouching in the chair. What I think is happening is that the nerves in my butt and in my legs get compressed when I sit on the chair, and this acts like crimping a hose, and therefore dulls the pain.
I dunno. Maybe my posture is being forced more upright. All I know is, sitting in a hard wooden chair for the past four cycles/months seems to lessen the pain somewhat.

Sometime around 11am today is when the bleeding ramped up from dark brown spotting to dark red flow. It’s been dark red all day. It has been thick, sticky, and slow to come out. I’ve only gone through two light fabric pads today.

I got into my usual refusal of meds funk again today. I finally relented and took 600mg Advil gelcaps sometime around 1 or 2pm.

While trying to get some homework done around 7:30pm, the pain became sharp and continuous, so I put my homework away. This sucks. I got exactly two drawings done for the fifth and last Language Arts binder tonight. I still have 23 more drawings to go. I’m still only half-way through the Math binder illustrations, and I still haven’t even started the Cultural binder. These are all 3 months past due. I spent my day ranting on my endo blog and generally being mentally irritated, and also in moderate pain. I did not want to do homework. I had to force myself to do some.

I also had to force myself to eat.

I ate a bowl of rice cereal (Trader Joe’s version of Rice Krispies) with some Almond milk.
I ate a rice-chocolate candy bar.
I ate a “Yo-baby” banana flavoured yoghurt cup.

I seriously think that’s all I’ve had to eat today, until now.
Right now I’m eating a brown rice tortilla, topped with Trader Joe’s Alfredo sauce, some dill flakes, some basil flakes, some white mushrooms, diced forbidden black forest ham, and shredded goat milk cheddar cheese.
This is the biggest meal I’ve had all day, and I ate it not only because my stomach was finally officially rumbling, but also to be able to take my first Tylenol 3 of the day.

I’ve got 7 Vegetable Soup thawing in the fridge – just took it out of the freezer today. I’ve got some chicken breast tenderloins cooking in the oven to force myself to eat tomorrow.

We’ll see how I’m functioning tomorrow, and whether I can bring myself to eat more than cereal.

Three last things to note:

1) Either it’s seasonal allergies, or 2) I’m getting sick, but there’s a lot of sneezing and thick phlegm going on today. There’s been a lot of phlegm in general for the past week or so. Being a preschool teacher will guarantee that one gets a virus or two or three on a pretty regular basis.

3) My ‘trapped nerve’ in the neck/left shoulder keeps acting up, then settling down, then acting up again, but I’ve refused to continue taking the remaining muscle relaxers. I think there’s 4 left. I’ll take them with Tylenol 3 if the endometriosis pain gets really bad.

Right now, the pain is radiating down the top of my leg nerves, to my knees. So I’m gonna call it a night and layer myself with all manner of heating pads in bed.

I tried to go back to work on Thursday, September 16, but the Last Gasp happeed two hours into my workday and so I took a whole Tylenol 3 and came home. Thankfully, by Thursday night, that was the end of the major pain and bleeding.

I went to work on Friday and was able to complete a full day of work – the first all week. I never need this much time off this job for the pain, which tells me either the endo really is getting worse, or I’m becoming a wuss to the pain after enduring it for 25 years. I worked a total of 10 hours that week. Ugh.

Friday was not only my first day back to work, it was also my birthday. After work, my husband took me to a very nice sushi dinner, where I stuffed myself until it hurt, heh. I don’t think we went out that night – I was still too tired from just having spent a week bedridden. That’s how it goes.

Saturday, September 18, set the clock! Go out and have fun til the next endometriosis attack! We went to a nightclub down in Menlo Park to support the scene down there. I didn’t really have a good time, but we did get a nice picture taken of us:

On Sunday, we joined up with a fellow birthday girl for her annual Ice Cream Crawl, which took place in Oakland and in Berkeley. Around stop #6, I decided to eat sorbet instead of ice cream, which had given me a tummy ache, no matter how much lactaid I had ingested. The sorbet was raspberry chocolate flavour. To my dismay, it was full of raspberry seeds. I shared the sorbet with people in our group, and we all winced at how seedy the sorbet was.

Within twenty minutes, my throat began to get dry, then swell up.
Great.

So now I’m allergic to raspberry seeds? Wonderful. It’s in the same salicylate family with peach skins, grape skins, apple skins, apricots – all the stuff that also hates me either orally or intestinally.

I took a children’s benadryl but it did nothing, so I took a adult dose of benadryl on top of it – 36mg total. This of course made me a zombie, and so my husband ended our Ice Cream Crawl and took us home for the day. The swelling did not abate all day and all night, but I refused to go to E.R., because the last time I did, they told me they could not visualise the swelling, so it must just be me having a panic attack. To which I’d replied, “I know what a fucking panic attack feels like, and this is not it.”

I get the same throat swelling when I eat eel. Actually it’s the uvula that swells up. Same thing happened with the raspberry seeds, only not as horrible as it does with eel, thank [insert deity here].

I refused to go to E.R. because I cannot afford further debt with them – still haven’t paid off the June debt I incurred with another oral allergy attack. And I refused to use my epi-pen because you HAVE to go to E.R. if you use it. So I was kinda stuck. I knew I wasn’t gonna die, or at least I hoped I wouldn’t die choking on my tongue.

I made it through the night and the swelling went down by morning.

What a sucky end to my birthday weekend, though.

All through this whole time, I was still dealing with having to be on muscle relaxers for the trapped nerve in my shoulder. So I was quite the grump.

Monday, September 20, while bicycling to my psychology appointment after work, I experienced pulling, stabbing pain in my right ovary. This is not a good thing to be going through while pedaling. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Ugh.
The pain went away, though. Thankfully. But I was not even a full three days into my new cycle when that pain hit. The endometrioma is doing bad things to me. :(

I was able to bicycle to work for most of last week. I even made it to the gym on Thursday, September 23, for the first time in 146 days. I did the 2lb hand weight workout exercises as prescribed by my trainer, and then I did 14 minutes on the elliptical machine.

The pain from the workout did not hit until Saturday, just in time to help my friends move in 85°F heat. I designated myself cleaning lady that day, because on top of the workout pain, I slept wrong again and the trapped nerve issue in the neck/shoulder flared up real bad again.

On top of all of this, I’ve been bruising the hell out of my legs by running into the coffee table repeatedly, as well as the child-sized furniture at work. I have bumps and bruises and scrapes. I think the clumsiness is due to the muscle relaxers.

Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

It’s not fair that I can’t enjoy my 11 – 20 days between endometriosis pain cycles being totally free of any other sickness or pain.

It’s always something. :(

Today is heavy and painful. After 7am, I woke with severe low back pain that left me hunched over further than I normally am when I get out of bed or a chair in pain. I could have scraped my fingertips on the ground, it seemed I was bent over so far.

I ate some cereal and almond milk, and consumed a whole Tylenol 3 pill first thing this morning. I went back to bed with a heating pad on my lower back, and alternated between the cat/dog and the cat/cow yoga poses on the floor and on the bed. I whimpered a lot.

Then I went back to the kitchen and reheated my corn and rice heating pads. I sat down in the kitchen chair while waiting, and my pain dissipated. So I’ve been in this same chair ever since, reheating the pads as necessary. That’s about 4 hours now I’ve been in this chair, but the pain is manageable. The moment I get up and walk to the bathroom, the pain starts again. So here’s where I’ll stay, like I should have done yesterday.

I’d also like to point out that my pain was managed well by the Tylenol 3 for the past four hours, and I have been coherent and rational, albeit moderately sleepy.

It just sucks that a synthetic pain relief pill which eats my kidneys and liver works better for pain management than a plant growing in nature, which will not kill my kidneys and liver but will put me in a vegetative state for 8 or more hours.

I’ve tried Sativa. I’ve tried Kush. I’ve tried Indica. Now I’ve tried CBD. All make me incredibly high, even on low dose, with minimal pain relief.
Actually, the Indica, Sativa and Kush INCREASED my pain.

Bleh.

I am currently on round two of medication for the day: 400mg Ibuprofen and half a Tylenol 3.

Gonna try to get some homework done.

6:48pm edit:
Around 4pm I took my third round of medication – a full Tylenol 3. So it was about 8am, 12pm, 4pm.
At 6:48pm it became suddenly hard to breathe. Maybe didn’t drink enough water today. Chugging water now and going to lay down. I am happy to have gotten about six hours of homework done!

8:07pm edit:
I do not understand why, for two days in a row, I’ve become full on high as a kite on medication taken hours earlier. Today it was nearly three hours after I had taken my last dose of Tylenol 3, and suddenly I was high as a kite and it was hard to breathe. I had the codeine suffocation like I’d taken too much of it. When I went to lay down, I began getting piercing pain in the abdominal wall, just to the left of my belly button.
And then the coughing fit started. I spent 20-25 minutes coughing violently while in bed. I coughed til my throat bled. Every breath in itched. This could have been a dust allergy interacting with the upper respiratory tract infection, I dunno. The news says there’s a Pertussis outbreak. I am supposedly vaccinated against it, but my immune system is non-existent so who knows.

My coughing fit did not calm down until I applied eucalyptus chest rub to my chest and inhaled it off of a cotton ball. I am so glad I spent the cash on that stuff at the hippie store.

Two last things: #1 the weather has been mild and sunny for the past two days and I have not seen any of it due to the pain and medication haze.
#2 I forgot to mention that I had called my GYN about the greyish clot I found two days ago, and I heard back from the doctor’s office yesterday, just as I was fighting the last bits of coherency as the cannabidiol took me down.
The person I spoke with said it’s entirely possible that my endometrioma ruptured and that could be what I am seeing what with all the grey and dark brown blood and debris. I expressed worry over what my innards must be covered in, if this is diseased material that ruptured inside of me. She told me there’s no way of knowing what, if any damage has been done. She wrote off my worry. Stupid human.

This is where it gets interesting – I Wait For It and find out just how bad the pain gets as new growths and adhesions start to take root…if in fact the endometrioma did rupture.

Go me.

Saturday, July 3, 2010 – Woke up at 4 on the scale, ate breakfast w/ coffee. The bleeding resumed – I hit a 6 on the pain scale.

Sunday, July 4, 2010 – Pelvic pain if I was standing – I spent most of the morning sitting and watching the town parade. Tried hula hooping in the afternoon – which set off more pain – about a 4 on the scale. Better by evening but I was quite fatigued.

Monday, July 5, 2010 – Begin teacher training class, which is an hour and ten minutes commute. I had to be up at 5:30am. Ugh. Got about 4-5 hours of sleep. VERY fatigued all day. Light spotting. Rented a hotel room with a classmate to avoid the hour-plus commute to and from school all week.

Tuesday, July 6, 2010 – Already under a lot of stress from the class and homework expectations. I was told upon enrolling months ago that I’d have all summer to get my coursework done. Now I’m being told everything for each class is due within 7 days of each class!!

Wednesday, July 7, 2010 – Students are having emotional breakdowns. I’m near breaking point. Pelvic pain kicking back up again as a result. Came home late Wednesday night.

Today, July 8, 2010 – I took the day off school to go to my first pain management clinic as prescribed by my GYN Dr. Giudice, and the pain mgmt program director, Dr. Thoha Pham. Good thing, too, cuz the pelvic pain is still with me, today. Yesterday and today it’s kicked up to about a 4 on the scale.
The person I saw today is a pain management psychologist. Her name is Dr. Katherine Bowman, and she’s going to teach me to be more disciplined in progressive relaxation, as well as introduce me to mindful meditation. My next appointment with her is July 29th, and she wants to see me every two weeks.

This evening, I have acupuncture, and I will talk to my practitioner about the herbal remedy (discontinuing it again because THREE fingers broke out completely from top to bottom, cracked open, bled, and shed skin for an entire week – started within 24 hours of ingesting the tea), and I will see if it’s possible to see her weekly.

My next appointment with the pain management program director is August 4th – to just check in and see how things are going. I’ve had quite a bit of confusion as to some Dr. Priscilla Abercrombie in the Women’s Health bulding – I thought my GYN wanted me to see her, but no one has been sure if I’m supposed to or not? So I’ll get that sussed out with Dr. Pham.

SO many doctors! Ugh. It is a sad commentary that I actually feel at home and comfortable in the presence of doctors and specialists. :(
And at the same time, the guy in the parking garage today asked me why I come around so much, and I told him I have an autoimmune illness that causes a lot of pain, so I’m on the medical campus a couple times a month. He looked me up and down and said, “You look like happy sunshine to me – not sick!” I beamed back at him and thanked him, and said I could be a full time invalid and patient, or I can live life when I can, and I choose to live life when I can. He smiled big and praised me. :)

For lunch today, I bicycled to pick up Thai food. It was a one mile trip on the bicycle, and now my knees are killing and my entire body is fatigued and feels like lead. This makes me mad at my body. It makes me feel like any exercise I do will always lead to more pain. I feel like I can’t win.

And yet, every single time, I get back up on that bike. I get back out of the house and go out somewhere. I keep fighting. It’s so weird. I get so mad, so frustrated, want to give up, but I can’t. Something just won’t let me. I’m off to do laundry, now. The laundry basket with all the dirty clothes weighs 24.4 lbs (11kg). I note this because I can carry it – normally. We’ll see how it goes today. Probably will be okay. Just noting how I keep getting back up on that horse, is all…one activity to the next, despite the pain.

3:40pm update: Note to self: bell peppers are in the nightshade family. You’ve had digestive problems with bell peppers for many years. It is getting worse. Now you are getting diarrhea after eating bell peppers. These are nightshades and also inflammatory foods and thus on your No Fly List.

ADHERE!

I had it in my head that I have been experiencing nausea for the past month, even when I am not on my menstrual cycle, and that this must somehow be a new development.

Then I got word of the MRI results, saying I have cysts in my liver, kidney, cervix, and I have an endometrioma on my left ovary. I thought for sure the nausea had to be tied to one or more of those, but fixated on the endometrioma, because I recalled being pretty nauseated in the past when dealing with ‘regular’ ovarian cysts.

So yesterday I’d had enough of the nausea – it got so debilitating that I could not read my homework anymore. Friends on facebook asked if I’d contacted a doctor about this. Uh..no, I haven’t, heh! So I did.

My local doctor’s office – the on-call doctor of the day – called me back after 9pm last night, and I asked him if he could prescribe Cesamet, which I heard about through a Canadian endometriosis buddy a couple of years ago.
He said no, his office doesn’t touch the stuff. He went on to say he did not think my nausea is being caused by the endometrioma or the liver or kidney cysts. He said he has never heard of nausea being brought on by an ovarian cyst, and says he’s been practicing medicine for many years. He was condescending and talked down to me and was authoritative, and suggested something else is going on that I should get checked out for. He said I should come in for a checkup. In the meantime, he suggested I try taking peppermint tea or ginger tea for the nausea. I told him I’ve already done that to no avail. He then sent in a prescription for Phenergan. I looked it up and decided the side effects were once again worse than the problem, and so I will not chance taking the stuff. Remember that I am the person who hallucinates on Tagamet and could only handle 6-8mg of any SSRI medication at a time without severe side effects, and over the long term, I am *still* trying to recover from the two years I spent on SSRIs.

ANYWAY, so Phenergan is out.

This morning, one of my gynecologist’s minions assistants called me back, and I talked to him about the nausea. He was MUCH more diplomatic than the local asshat doctor. He said that their office does not have experience with prescribing Cesamet, and so he unfortunately could not help me with that. He also said it seemed unusual that I should be experiencing nausea with an ovarian cyst. He told me that he felt the endometrioma was way too small to be causing problems for me at this stage. He also doubted that the liver and kidney cysts could be stirring up nausea, but he suggested I speak with a gastroenterologist if I am still concerned. I thanked him for his time and we hung up.

Gastroenterology, eh? Well I’ve already ordered the liver and kidney detox supplements, and they’re on their way. So I’ll try that first, before hiring on yet another specialist.

Today, just to say I have covered all my bases, I contacted one of the two Cannabis dispensaries I am registered with under Prop 215, but they would not speak to me by phone, and said I’d have to visit in person or send an email. So I emailed both dispensaries to ask if they carry or can get Cesamet. No one is available to take me to the dispensaries today, and I’m in no shape to go out on my own.

I do not have confidence that the dispensaries can get Cesamet.

This leaves me wondering about the nausea. So I searched my own blog, and was frustrated to find that I had posted about this 98 times throughout the life of my journal! I went back and made a category for this one keyword, to make it easier for me to search next time. Ugh.

So what does this mean?

This means that the nausea is nothing to be alarmed by, whether it’s on cycle or off. I usually had this only on cycle, but apparently having nausea between cycles – it’s just part of living with endometriosis.

Go me.

I am truly frustrated and feeling at my wits’ end by having to continue residing in this meatsack. I feel I am reaching the bottom of the emotional pit this month. I hope that means that after today, the pain and bleeding will ease up, and I will be able to emerge once again from the Underworld.

Each month that I must pass through the Underworld, I grow weary of ever making it back out alive again. I fear that one of these days, I’m just going to give up and make it my permanent home out of sheer exhaustion with having to battle this illness.

I remembered that which I’d forgotten in last night’s blog entry – herbal tea.

My acupuncturist had prepared an herbal tea for me to take as part of my treatment through her. I had stopped taking it some months back because I suspected it was making my dermatitis worse. One of the ways my food allergies manifests is through atopic dermatitis – specifically on my left thumb. At my last visit with the acupuncturist, I said I wanted to try the tea again. I said this because I’m freaked the hell out over the endometrioma on my left ovary, and I don’t want the sucker to grow any bigger. I’m willing to take on as many new therapies and treatments as possible – like a hammer to the problem – if it will help.

A dermatologist I saw a year or two ago told me it’s impossible for wheat or any food to cause or agitate the dermatitis on my thumb. He said it is caused by my skin reacting to direct touching of detergents and other chemicals. My argument stands to this day that it is ALSO caused by ingesting allergenic food and drink. I fired that guy after the first visit – I’ve had enough of doctors telling me what they think is going on in my body, when I have repeatedly proven them incorrect. Remember the doctor who wrote off my endometriosis entirely and said I just have IBS? Remember the surgeon who said I don’t have endometriosis – that I only have dysmenorrhea, and so she refused to give me a laparoscopy? Remember all the doctors for years who fought against me asking for antibiotics right off the bat because they didn’t believe I can have an immediate sinus infection? Remember the E.R. doctor who said and wrote in my chart that the only cause for my acute pancreatitis at the age of 21 was because I must be an alcoholic? (the nurse told me the pancreatitis was from doctors giving me Cipro for repeat sinus infections every month for a year). Remember the humiliating experience of having to submit to STD testing because the doctor was sure my husband was running around on me, since that’s the ONLY way I can POSSIBLY have gotten cervicitis? She even tried to counsel me right there in the office about my relationship!!!!
So ah, yeah. Sorry for the lashing out. Guess I’m not ready to forgive people/doctors, yet.

Back to my thumb:
Within 24 hours of starting the tea again, my left thumb, which had been doing well, split open and started bleeding again. It has to remain fully bandaged when it does this, and looks like I have a broken thumb or something.
And of course, I’m being stubborn and still drinking the tea, because I’m sitting here thinking, “well maybe it’s the dish soap I used – it contains orange oil and I’m allergic to oranges.”
I’m still drinking the tea because yesterday my cramps were minimal, and I want to try to keep it that way by any means necessary – even at the expense of my poor little left thumb.

My current treatment plan:

• 1/4 teaspoon endometriosis blend tea in a cup of hot water, 2-3x/day
• My regimen of vitamins and supplements
• Acupuncture every 2 weeks (I want to increase this to every week)
• Massage when I can (I want to increase this to every week)
• Elimination of refined sugar
• Elimination of all dairy
• Elimination of caffeine
• Resumed elimination of alcohol (I’ve had some to drink every now and then since May 2010 but I’ve stopped again because I don’t like how it makes me feel in the moment anymore)
• Continued adherence to No Fly List (I’m still failing on stuff like butter, salt and chocolate)
• Continue with trusted pain medicine cocktail (Tylenol 3 and Ibuprofen)
• Continue with consciousness to posture, correcting gait, and administering large hip circles and yoga pose.
• Keep getting on my bicycle as often as possible.

And yes, I know, I need to get back into the gym, and I need to ride my bike farther than just running errands or going to/from work.

My current surgeon will not give me another laparoscopy until the pain becomes constant and unbearable. She wants to take a wait and see approach to the endometrioma. She says if she goes in and carves the sucker out, another one will just grow back in its place. She knows I don’t want to remove my ovaries because I don’t want to go on Hormone Replacement Therapy, because synthetic hormones make me suicidal (tried and proven twice!).

George is two days late. He was due Sunday. Because I always count the due date as Day 1, I’m going to say he’s actually three days late.

Last month, I was diagnosed with a .9cm chocolate cyst (endometrioma) on the right ovary.

A month before that, I was sure I’d had an ovarian cyst which ruptured.

Either that cyst did not rupture and continued to grow from March to April, and then from April to May, or I’ve developed a new ovarian cyst since April.

In either case, my reality is that I do have an ovarian cyst, which I can tell you about with my own authority and experience, and I can back it up with the ultrasound I had on April 21.

Before March 2010, the last ovarian cyst that I really felt and had complications with was in November/December, 2008. I suspected an ovarian cyst in October 2009, but I didn’t follow up on it in my journal, so I dunno if I had a cyst or not.

So my own authority and experience this time around matches up with my symptoms in November/December 2008 as well as my symptoms in March, 2010: during the current cycle, I was supposed to begin menstruating on Sunday, May 9, but george is nowhere to be seen. Instead, I began experiencing stabby right side ovarian pain on April 30, which has lasted to the present day.

Going back through my calender, I noted:

Monday, May 3 – left side ovarian pain started.

Tuesday, May 4, – sharp low uterine, upper vaginal pain – intermittent. Heavy fatigue throughout the day. Full uterine and ovarian (both sides) pain at a dull constant level throughout the day, rising to 4 at times on the pain scale. Took 400mg Ibuprofen at 8pm, took 400mg more at 9:30pm.

Wednesday, May 5 – Fatigue, achey, intermittent uterine pain

Thursday, May 6 – sharp pelvic pain – stabbing left ovarian, sharp intermittent low uterine pain. Uterine pain became constant by 2pm. Large hip circles earlier that morning to manage the pain were not successful.

Friday, May 7 – Constant low uterine cramps. Highly emotional all day, turning to high irritability by nightfall. Had food reaction – I suspect either the ‘smoked’ cheddar/mozz cheese or the marinara sauce on my gluten-free pizza.

Saturday, May 8 – Constant low grade uterine and ovarian pain. On ibu all day – consumed over 2,000mg. Still quite irritable.

Sunday, May 9 – George is a no-show. Moderate low back pain, on ibuprofen again but only took 800mg total and toughed out the pain. intermittent continued uterine and ovarian cramps.

Monday, May 10 – I didn’t record anything that day because I was out of the house running lots of errands after work til nearly bedtime to prepare for upcoming Michigan trip.

Tuesday (today) May 11 – Pinching/stabbing right side ovarian pain. Took 600mg ibu first thing in the morning, 600mg ibu around 2pm. Heavy fatigue all day. Mild to moderate intermittent uterine and right side only ovarian pain all day.

(side note: I’ve tried my gluten-free pizzas several times since May 7 and the only constant is the tomato sauce – all other ingredients have been changed up – so I bet my tomato allergy has caught up with me again after being dormant for years…just like my citrus allergy caught up with me again last October).

(another side note: I’ve only been to the gym twice this month, and I bicycled five times this month, with the last time being a week ago – May 4)

The ovarian pain, the low back pain, the fatigue – all of that is part of my usual pre-menstrual pain, but I also had vaginal pain and really tender/painful breasts and nipples this cycle, and THAT for me smacks of ovarian cyst.
Given that I knew I had a cyst in March, and a cyst was found via ultrasound in April, it’s pretty much confirmed for me that the reason why my period is late is that the cyst is still growing and causing problems.
I think the longest my period has been late during an ovarian cyst flare has been three days. So george should therefore be here by tonight or tomorrow.

Knowing that helps me not to freak out so much, cuz by last night I was freaking out in the most irrational ways:

• OMG what did my acupuncturist do to me last Thursday – she did so good that not only do I not have massive pain, I am not bleeding at all!
• OMG I’M PREGNANT!
• OMG MY WEEKEND IN MICHIGAN IS RUINED – I’LL BE BLEEDING AND IN HORRIBLE PAIN ON THE PLANE AND IN MICHIGAN DURING THE PLANNED PARTIES AND CLUB NIGHTS!
• OMG IS THIS WHAT ADENOMYOSIS DOES?
• OMG I HAVE CANCER!
• OMG I HAVE NO IDEA WHAT IS WRONG WITH ME!

 
I’m much calmer today after reading up on ovarian cysts again, and going back through my journal entries on my previous cysts. I’m falling more into acceptance with what is happening, and adopting the ‘This too shall pass’ mentality.
I’m still pissed off that my weekend plans are likely ruined, but the truth is that these things can easily be rescheduled before I fly back to California.

I’ve never flown on an airplane during a my period, and my period is ALWAYS a nightmare of pain, so this should be interesting. :(

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.