I Will Not Suffer In Silence

Back on January 21, I saw Dr. Streitfeld, who referred me to Dr. David Adamson, who is a reproductive endocrinologist.
I’ve been leaving messages for his office and for a regular endocrinologist named Dr. Grace Eng, who I tried to see in 2009 but for some reason never got to.

Anyway, today I finally got a live person on the phone at Dr. Adamson’s office, and within seconds my heart was broken, my hopes dashed.

“I’m so sorry, but Dr. Adamson is no longer seeing patients with endometriosis - he only sees patients with endometriosis who are trying to have children.”

I was shocked. I thought some sort of cruel joke was being played on me. I could hardly believe what I’d heard was real. I thought, he’s no longer giving endometriosis patients the time of day UNLESS they want babies?!?!?! What the hell kind of slap in the face is that?!

I kept my voice even and as sweet as the secretary’s voice. I asked if there are any other doctors that Dr. Adamson is referring endo patients to.
I was told he refers patients to Dr. Andrew Cook.
Well thankfully, Dr. Cook is on my short list, so I called his office, next.

I was all set to schedule a new patient visit, when the secretary gave me the lowdown:

They don’t DO insurance - they want prompt payment from my bank account or credit card. But they are happy to submit a claim to Aetna insurance company on my behalf for the rest of the money to maybe be returned to me. From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500.

I told the secretary I’d have to talk it over with my husband and give her a call back.

When I got home, I also remembered that Dr. Streitfeld had said he thinks I could have adenomyosis, which could be detected on a MRI or a PET scan. If I want to skirt around seeing Dr. Cook in the short term, perhaps my current GYN can just send me for a MRI or a PET scan…so I logged into Aetna’s website and looked up the pricing. I did not see PET scans being offered, but MRI is. For in-network, a MRI will cost $1,772. Of that, I am unsure how much my co-pay will be. I had a echocardiogram in 2009, which cost over $4,000. There were two or three insurance adjustments made, and I ended up paying around $470, which is still a lot of money, and took me a year to pay off, because I only make $11/hr and my husband doesn’t like shelling out his own money, even after he assures me he will (but that’s a whole other can of worms).

I sulked.

Here I am, trying to do the best thing for my health; I am trying out alternative therapies, which are costly and out of pocket. I am trying to find a new gynecological surgeon so I can get surgery number two after the first one three years ago never gave me any pain relief, and now I find out that the type of surgery I am interested in (excision vs. cauterisation) is also going to be an out of pocket experience.

On top of that, I have been at my recent job for 10 months with only partial training for the job. This keeps me at assistant status, which keeps my pay low. I need to shell out $1,700 for classes THIS SUMMER, which will bump me up to head teacher, which will increase my salary.

The dilemma is this: stay on the job and take the courses, but continue to miss work each month due to the pain, OR start seeing Dr. Cook, save every penny I can, and get surgery number two, which will require me to take weeks off work to recover from the surgery. When I get back to work, I’ll be playing financial catchup for a year or more.

I even mentioned my financial frustration to my husband in chat when I got home from work.

Me: i’m beginning to feel the reality - i can EITHER start on a new path with a new surgeon and get that second surgery in hopes of long term pain relief, OR i can go to montessori teacher training.
Husband: at least for now?
Me: right
Me: this year
Me: those are my choices
Husband: well, there is the lottery…:/

This exchange left me feeling not only frustrated, but mad.

Before you even think to ask me about credit cards, yes, I have two, and they are already maxed out since our honeymoon in May, 2009, and my having to live off of them since that time because my husband doesn’t like to spend his money to support me. Even though he says he’s fine with it, the money is not there whenever I need it. I had an acupuncture appointment last week, and forgot about it til the last minute. I asked my husband for financial assistance ($50) the night before the appointment, and he got real upset with me. He grudgingly wrote out the check.
On Friday, I asked my husband if it would be possible for him to withdraw up to $100 in cash on Saturday so we could look at what the dispensaries had to offer me in the way of alternative medication. He said yes, and seemed to not have a problem with this. He patted himself on the shoulder that day for supporting Prop 215 “by putting my money where my mouth is”. We got inside the dispensary and I priced out a few items. I wanted to try the butter, the mocha mix and a tincture. The cost would come to just under $60.

My husband told me I could EITHER get the butter OR the tincture. His face went grey with how expensive each was (about $22 and $36 respectively).

So for a man “putting his money where his mouth is”, he withdrew $100 for me to get what I wanted to treat my pain, and then only permitted me to use $28 of it.

This is a man who makes $65,000 MORE than me each year, and he’s suggesting I try the lottery to cover basic needs of raising my income via schooling, and surgery to alleviate or minimise chronic pain.

We have a joint bank account. It has been empty since the honeymoon.

We’ve had several talks - or rather the same talk over and over. Nothing is changing.

He pays all of the rent on our apartment, and he often helps pay for my expensive groceries (see my list of allergies and whatnot). He has taken over the long distance phone bill and the land line bill.

I pay for my cell phone, my auto insurance, some groceries, my two credit card balances, the DSL connection, our renter’s insurance and earthquake insurance. That alone takes up most of my paycheck every two weeks.

My husband is on his way to band practice right now, and I will be asleep when he gets home, so I emailed him, requesting that we have yet another financial talk. If I could only get official confirmation that he will not support me financially, instead of this wishy washy bullshit, then I can formulate a plan to care for myself.

If I am on my own financially, I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.

Today was my first day back to work, after having missed Monday and Tuesday.

It is my intent each month to give a “postmortem” or summary of what I went through, and my thoughts on what I went through. I don’t always remember to do this - let 2010 be the year I begin remembering this crucial type of blog entry.

The bleeding subsided by yesterday evening. Residual cramps pestered me throughout the night and into today, but it was minor enough that last night I was able to go to a friend’s house and watch the season premier of LOST, and today I was able to work a full day with minimal to moderate pain. I did have to take 400mg Advil gelcaps once today.

I cannot recall if I have laid out exactly what my job entails, so let’s do that now - I just created a page called A Work Day In The Life Of Steph.

When I got home from work, I threw off my work clothes and got into my pajamas, and tucked myself in bed with the laptop and some heating pads for the rest of the evening. I so need the extra rest.

Reflecting back on this past weekend, it was pretty scaring emotionally. If I had my way, I’d never touch marijuana again. I had gone into the weekend expecting that my new medical marijuana ‘card’ would bring some sort of good alternative treatment into my life.
Although I have misgivings about the last two times I tried marijuana (I smoked it and the pain grew worse), and although I’d read one study which showed that in vitro, “THC exerts palliative effects in cancer patients, but produces adverse effects on the endocrine and reproductive systems“, I was still hopeful that cannabis edibles could still help me relieve some of my pain.

On Saturday, while medicated on Tylenol 3 for the pain, my husband drove me to the local smoke shop, where I priced some vaporizers in case I wanted to try that route again. He then drove me to a medical marijuana dispensary, where we registered ourselves, toured the facility, and checked out some tinctures, powdered mixes and butter. That day, we bought an undetermined cannabis blend put into a peppermint mocha mix, and a blend of butter called “Kush”. A friend had told me to get a strain called Indica to treat pain, but I forgot to ask specifically for that while we were at the dispensary, and it didn’t seem that the labels on the edibles stated directly whether something had indica or not.

Saturday night, I tried the butter around 11:30pm. I only had about a teaspoon’s worth on a gluten-free waffle. It took over half an hour to kick in, and the high kicked in first, but what I remember is that for about an hour and a half I was completely pain-free. Now, this could just be as simple as my cramps abated on their own.
Or there was something to the butter. But after an hour and a half, the cramps did return, and I was still uncomfortably high from the butter, so I did not want to consume more.

On Sunday around 1pm, I tried 1tbsp medicated mocha mix to ease the pain, and mixed it with a cup of hot goat milk and 1tbsp Trader Joe’s sipping chocolate. I did not want to gulp it all down at once, because I was unsure of the dosage. The mocha mix was a single serving, but I know my body better than that, and eased way off, only digging out one of the estimated three tablespoons available in the “single serving” pack.
Again, it took too long for the medication to kick in. Once it did, the high hit me and I went on a 7 hour bad drug trip, accompanied by a pathetic pain dissociation attempt. I bled like a stuck pig all day. I experienced maddening gnawing uterine and pelvic pain, which led me to agonising choking sobs twice that day. I could not take any other pain medication for fear of getting even higher than I already was, which was very uncomfortable for me. I did not experience any pain relief until after 7pm - when I consumed 800mg of Advil gel caps.

On Monday and Tuesday, I stuck to Tylenol 3 and Advil all day and was made much more comfortable. As I stated of the Tylenol 3 on Monday, February 1, “I knew when my body was in pain, because the top of my skin would twitch, or my whole body would jump. Then it would take up to three full seconds for my brain to register that the twitch meant huge stabby pain was happening. But by the time it got to my drug addled brain, all my brain had as a message to give to me was a faint recording of a scream, if that makes sense.” The pain dissociation was full and complete compared to the medical marijuana’s lame attempts.

I looked up the word my friend had told me - indica - to find out more about it. According to Urban Dictionary, “Indica is not slang for marijuana, but one of the three species of marijuana; Sativa, Indica, and Reduralis. Sativa is more of a skinny, tall, lanky, and less yielding plant that produces a mind high. Whereas Indica is more of a small, broad, and usually a higher yielding plant that gives you a couchlock body high.”
MarijuanaStrains.com pretty much says the same thing.
I agree with my friend, I need the Indica.

I looked closely at the packaging for the medicated mocha mix and found no info whatsoever as to the blend of medical cannabis in it. LAME.
I examined the package for the butter and could only find the word ‘Kush’, so I looked that up. According to wikipedia, “Kush refers to a subset of strains of indica cannabis”. Over at MarijuanaStrains.com, they say that the Kush blend gives a cerebral high.

Alright, lesson learned. Ask more questions about what can give the best “body high” or dissociation, and make it abundantly clear that I do not want anything that is not Indica.

And then we’ll go for round 2 of medical marijuana treatment. As I said earlier, if I had my way, I’d never try medical marijuana again.
Alas, I am also sick and tired of people constantly asking me, “have you tried…?” down to the finest detail. So my answer for “have you tried medical marijuana?” is incomplete, until I can, with authority, say YES I HAVE TRIED BOTH SATIVA AND INDICA STRAINS.

In the alternative medication department, this coming Sunday, I have a phone appointment with my acupuncturist to discuss further herbal remedies for endometriosis. On Sunday January 31, I stopped taking the herbal pills she’d prescribed for me in early December, because I was upset with the side effects that were manifesting.
Throughout December, I was only taking one pill a day, when I remembered at all.
Starting mid-January, I finally started remembering to take two pills twice a day, and according to which blend I needed to be on during my menstrual cycle. This is when I began to notice the negative side effects - first I started getting manic-depressive. I attributed it to the New Moon. Then I got manic again, around the Full Moon. Instead of blaming it on the moon, this time I became consciously suspicious of the herbs.
I normally do not suffer from mania, you see. The last time I did, I was on Yasmin.
Now, here’s another problem - I told myself I would research the herbs before taking them, but then I felt pressured by my acupuncturist to start taking the pills NOW, because she wanted me to start getting better NOW.
It’s not her fault I felt pressured. I wanted to start feeling better NOW, too. So I threw aside the research I had started and just took the damned pills, hoping for pain relief.
What I got instead was manic-depression, to the point of being super hyper and anxiety-ridden to sobbing uncontrollably within the span of a few hours. And it happened on more than one day. And then my fingers started splitting open and bleeding again. I checked my diet - nothing I could think of to be causing this allergic reaction….

…except maybe the herbal pills.

So I emailed back and forth with my acupuncturist last weekend, and just stopped taking the pills altogether on January 31. She says her supplier told her that the pills are both gluten and yeast free, but something is triggering the atopic dermatitis, because my fingers cleared up perfectly within 24 hours of stopping the pills.

It’s getting too late tonight to do it, but I would love to go meticulously through the ingredients list for each brand of herbal pills - both the Unicorn Pearl and the Harmonizing The Moon - to try to root out the dermatitis. I already know the ginseng and/or the dong quai is what brought out the mania. And I find it quite interesting that those two herbs, which are touted to acupuncturists as being ‘warming’ and ‘good’ for gynecological problems, are listed as BAD elsewhere.
For example, MedicinePlus says “Avoid use of ginseng in patients with hormone sensitive conditions, such as breast cancer, uterine cancer, or endometriosis.” Also noted on that website for side effects of ginseng:
“heart palpitations, rapid heart rate, leg swelling, nausea/vomiting, or manic episodes in people with bipolar disorder”.
I’ve never been diagnosed as bipolar on my own - but I did exert bipolar tendencies when I was put on SSRIs back in 2000-2001. It is thought by later psychologists that the meds pushed me from my official Major Depression diagnosis into bipolar territory.

But the ginseng made me bipolar.

Good thing I saw a new psychiatrist today.

Regarding dong quai, MedicinePlus says, “It remains unclear if Dong quai has the same effects on the body as estrogens, if it blocks the activity of estrogens, or if it has no significant hormonal effects. It remains unclear if Dong quai is safe in individuals with hormone-sensitive conditions such as breast cancer, uterine cancer, ovarian cancer, or endometriosis.” Also noted as a dong quai side effect on that website is skin rash. Same with ginseng.

In the physiological department, I am still spotting this evening and will likely continue to do so for another day. I am constipated from consuming the Tylenol 3, and I still have moderate low back pain. I am super tired like I always am after having spent a few days writhing in pain and medicated to the gills.

Oh, and my gym membership card is ready to be picked up - I need to give the personal trainer a call and see if Monday February 8 is a good time to get together. Hopefully she can work well with me and my mobility issues, both with the osteoarthritis and with the endometriosis.

This morning I got up, ate two bowls of cereal, leaned over to pet my cat, and the nausea and weakness set in. The pain and bleeding, which had stopped overnight, also resumed.

I hemmed and hawed for a few minutes, then called in sick to work again. My body wanted to puke and the pain was only a 6 on the pain scale.

At 8am, I took a whole Tylenol 3 pill. Within 18 minutes, the drugs kicked in. Sweet!

I have determined that I’m alright, as long as I *don’t move*. I can stand, or I can lay down with heating pads. Sitting or otherwise moving around is right out.

The part that sucks the most is that my mind is feeling better, but my body is not. My mind is awake, alert and ready to tackle housework. But then I take one step and my pelvis cries out in agony.
The Tylenol 3 is not just good for pain dissociation, it’s also good for knocking me flat, so that I’m forced to rest.

Like, right now. I’m super light-headed and need to go lay down.

9:40am Edit:
Just woke with the most mother effing cramps ever. Too nauseous to eat. Take more Tylenol 3? Take Advil? Call an ambulance?

9:50am Edit:
Heating Amy’s freezer brand gluten free mac ‘n cheese. Will take 4 advil gel caps. Already have 2 heating pads on me. breathing.

10:20am Edit:
Got the mac ‘n cheese down. Got the Advil down. Also took another Tylenol 3. Breathing. Waiting. Pacing. Acupressure points.

11am Edit:
I am effectively dissociated from the pain once more. Trying for sleep again.

1:30pm Edit:
Slept for an hour and 40 minutes (until 12:40pm), pretty good.
Problem is, I wasn’t breathing. Had Tylenol 3 induced nightmares. Woke up choking for air. It’s now nearly an hour after I woke up, and I am still drawing deep breaths and hoping for the full return of my faculties, and I have a headache.

I had crazy dreams/nightmares about my ma’s side of the family, like I *always* do when on a lot of Tylenol 3. We had some sort of reunion in someone’s house, which had an upstairs and a basement. There were small dogs, I think. The family was glad to see me but didn’t know how to act around me - as usual I was the weird one. The family acted as though I was cursed, or worse, an imposter of the blood line. But they tried to be nice to me about it. Then it faded to ignoring me. I tried to get photos but no one would stand still. The photos I did get looked creepy, so I declared the house to be haunted. At the end of the dream, I asked the family to all post skeletons as their user pix on Facebook.

The dream is just my fear of rejection surfacing, again. In the past year, I have reconnected with 23 family members on my ma’s side, mostly cousins. I am supposed to have a family reunion with them sometime this year.

Today went much better than the weekend went. I am so thoroughly afraid to try the medical marijuana again. I stayed on Tylenol 3 today. I took a total of three full pills.

I knew when my body was in pain, because the top of my skin would twitch, or my whole body would jump. Then it would take up to three full seconds for my brain to register that the twitch meant huge stabby pain was happening.
But by the time it got to my drug addled brain, all my brain had as a message to give to me was a faint recording of a scream, if that makes sense.

Had I not been on Tylenol 3, I’d have screamed in pain the moment it hit. Tylenol 3 is a good enough dissociative that it severs the pain signal.

Sometimes instead of my body jumping or twitching, I do feel the pain, but it’s so muted that I ride right through it.

And the whole time I was drug addled on Tylenol 3 today (as I continue to be, now), I was still able to read several chapters in a book, to converse on Yahoo chat, answer email and read through social networking sites.

This is not the case with the medical marijuana - with that stuff, I am in a disturbed and agitated state of near hallucinatory levels, and I feel the pain and can relay directly what the pain feels like, but I am too high to do anything about it. I must remind you that this seriously high state was achieved on Saturday by roughly ONE teaspoon of medicated butter, and on Sunday by ONE tablespoon of medicated peppermint mocha mix.

While on the medical cannabis, I could not take pain medication because that would adversely affect me, since I was already (in my opinion dangerously) high on the marijuana. And so I went mad from the gnawing pain and yet I was in a drooling stupor, then pacing the house, then drooling again.

My neighbor told me today that I likely got the wrong blend - that what I have is sativa, and what I need is indica.
I was told to ask for indica by another friend before my first visit to the dispensary. I just forgot is all.
Obviously I have to give it another try (because I always have to prove something to people - to the naysayers - that I really am trying everything my body can handle to treat the pain).

But until I return to the dispensary, it’s Tylenol 3 for me.

I called in sick today because I am still bleeding like a stuck pig, and I knew the pain would return.

As seen on Yahoo chat:

My Husband: 10:25 AM how’re you? *smooooch*
Me: 10:26 AM tired if you can believe it
Me: 10:26 AM pain is about a 2 on the scale
Me: 10:26 AM will be taking meds after i eat

Ten minutes later…

Me: 10:36 AM zenaide forgave me*
Me: 10:36 AM she’s wriggled into my lap
Me: 10:36 AM of course, just as the cramps are ratcheting up
Me: 10:36 AM *carries cat to bathroom to pop pills*

(*I had pushed my cat away from me around 10:20am, as she had tried to crawl onto the keyboard of the laptop. She was furious with me, glared at me and went to the living room and overturned something from a bookshelf, which left a gouge in the pergo flooring).

Seventeen minutes later…

Me: 10:53 AM pain ramped up
Me: 10:53 AM what was i, a 2?
My Husband: 10:53 AM aye
Me: 10:53 AM now i’m a 7.5
Me: 10:53 AM i took an entire tylenol 3 right after eating

I went on about how I should have just taken the meds as soon as I woke up. My husband just last night was telling me not to leave any gaps in the medicating, because pain has leaked through, before. I felt like I left a huge gap this morning, and was beating myself up over it.
My husband said, “but you had to eat in order to take the meds….so it’s not like you were stalling.”
He’s right, of course. I’d gone all night without meds and woke up with an empty stomach - I had to eat. I should have eaten earlier than I did. I woke up around 9am but didn’t eat til after 10am.

This morning I have tried pressure points but my legs are bruised from putting pressure on the points all weekend already. I also tried doing the large hip circle belly dance move, but it hurt like hell, as though I pulled muscles while exercising. I did a lot of hip circles and stretching Saturday night, perhaps I pulled something, or perhaps I’m just so inflamed right now in that region from the endometriosis pain, that any stretching or hip circles are going to naturally make the pain that much worse.
I tried pacing the house. That never works. I tried my breathing exercises; sometimes I swear the more I breathe, the worse the pain spreads.

Now all I can do is wait for the Tylenol 3 to kick in, and take more if necessary.

No alternative medication for me, today. No hippie dippy drug trips. Give me pain killers and lots of ‘em.

My gods, the anal pain just started up again.

WHY.

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.

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.

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.

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.

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!