The Waiting Game (or, How Ovarian Cysts Mess With One’s Menstrual Cycle)

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. :(

Pain Management doctor

Today I had my referral appointment with the pain management doctor.

I gave a rundown of my symptoms to a nurse, went over most of my medication history (what I could recall off the top of my head, cuz I didn’t have notes), talked about my surgery, and noted my own pain management techniques.

The nurse got my blood pressure and pulse (both fine), then stepped out to talk to the doctor.

Then O Ren Ishii came in and described in fast pace everything I need to do for pain management, and she thinks I’m a great candidate for pain management over continued medications.

Ok so she’s not really O Ren Ishii, but she did remind me of her and I did quite enjoy my visuals of her lopping heads of former doctors who refused to believe my pain. >:)

Her actual name is Dr. Pham, and she gave me the official referral to the pain managment shrink that Dr. Giudice wants me to see. Dr. Pham also wants me to try Neurontin as pain-management medication. She said if that doesn’t work, she wants me to look into Cymbalta, which is an antidepressant but works really well for pain management she says, and beyond that, it would be nerve blocks.

I was struck by this, and told her I’d read Dr. Ian Fraser’s lecture about unsheathed myelin nerve clusters being implicated in endometriosis. She looked from me to her nurse assistant and back to me again, smiled a little and said ‘yes’, and seemed awestruck that I’d possess such knowledge. I told her I was grateful that she and Dr. Giudice are on board with Dr. Fraser’s work.

However, I vetoed the nerve block idea, because they are temporary and it’s hard to get an appointment centered around the exact time I’ll be in a lot of pain, in order to get the nerve block. And it’s expensive – it would just milk the insurance. I told Dr. Pham that it would be a great idea if I were in pain 24-7 though. She respected and seemed to agree with me.

I told Dr. Pham that I need to research the neurontin and the cymbalta before getting a prescription from her, and she told me that was fine. I expressed reservations, and noted that I’m super sensitive to medications. We went over my previous go at antidepressants back in 2000-2002 and how I could only take up to 6mg in liquid form of antidepressants, because higher doses than that gave me full body joint pain to the point where I had to undergo months of physical therapy, and felt like I was experiencing growing pains all over again. I talked about how I became schizophrenic on Zoloft after 11 days, and that on Paxil, I lost the ability to feel any emotion except inner restlessness that made it feel like termites in my brain, and exacerbated suicidal ideation to the point that I created a plan to kill myself. So I went to the doctor to get off Paxil, was almost locked up, had to convince the doctor to just switch my meds, and I got on Celexa.
I plateaued on Celexa after 6 months, then fired psychiatrists and antidepressants altogether.

Of course, the doctor nodded and continued to insist I at least give the neurontin and cymbalta a try.

Of course.

Because doctors have always known best for me. I mean, burning off endo lesions during my laparoscopy totally helped with my pain, right? And putting me on Yasmin didn’t make me suicidal, and oh yeah, Iburpofen alone has always done the trick in fully managing the pain, right? Because doctors know best.

When I got home, I researched neurontin, and the side effects are scary as all get-out. I searched the Daily Strength forum and found displeasing info there, and sought out info on LiveJournal.

I googled for info on neurontin and it’s other name – gabapentin, and found the following:

Anticonvulsant drugs tied to increased risk of suicide

Neurontin (Gabapentin) – Adverse Event Reports – Death – Suicidal Ideation

Common Migraine, Epilepsy Drugs Linked to Suicide Risk

Certain Anticonvulsants Linked to Increased Risk for Suicide, Violent Death

Yeah uh… how ’bout no.

Thankful

George has not shown up yet today. Because of his tardiness, I was able to get in another full day of work. :)

Upon waking, I did have some pain, and was sure that by the time I was to leave for work, I’d be in full blown pain.

Instead, I was feeling annoyingly bloated, having low level cramps, and feeling like I might burst into tears at any moment. I went to work, because it was too late to arrange for a substitute teacher. I went in thinking I’d have to turn right back around within an hour.

While waiting for the parents to begin the drive-in drop-off at the school, I stood in silence, taking in the nice sunny morning. It was mostly cloudy but I could still see enough of the blue sky and feel the sun on my face. I stared at the trees in the lots surrounding the school, and I just wanted to cry my eyes out, and I could not explain to myself just why. Hello, PMS.

Although I think part of it is that I expect routine from my illness, and when it deviates, it messes with my head. When the pain is absent for too many days, I actually get hopeful – I envision my illness just vanishing, and I wonder how long it would take for me to really believe it and TRUST being pain-free. Not being bedridden today when I thought I would be gave me some hope that perhaps this cycle won’t be as harsh, and maybe it won’t even be painful at all. But 24 years of cyclical endometriosis pain seems to laugh at that notion.

Just after 9am, the pain was enough that I took what Ibuprofen I had on me – 400mg gelcaps – and waited for the “real pain” to arrive.

I was super tired for most of the day, but the pain never got above a 4 on the scale. :)

All day I have had fierce sugar cravings, and I’ve had to keep my attitude and my anxiety in check all day, because of the PMS. I swear, if I’m not experiencing pain before my period, I’m experiencing really bad PMS! I will take that over pain though!

After work, I went to my acupuncturist appointment. I was super tired, forgetful, and dazed, but not in pain! I got treatment points in the feet, legs, pelvis, left wrist, hands and ears, then after that treatment, I received treatment points in the lower back, since that’s where a lot of my pain has actually been in the past week.

When I got home, I was still feeling tired, but not as tired as I’d been before the acupuncture appointment. With a little coaxing, I convinced myself to get some housework done with this extra time on my hands.

Because george was late, I was able to work an entire shift today, go to my acupuncture appointment, fold and put away five blankets and a slew of clean towels, unload the dishwasher and load it back up again, and wash some stuff that can’t go into the dishwasher. I also cooked up some gluten-free, yeast-free pizzas for me and my husband.

All that, on a day I was supposed to be bedridden. :)

So despite my crazy emotions, I really am thankful to have had one more day without george.

Last gasp

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

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

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

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

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

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

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

The pain ramped up.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Round 2 of Medical Marijuana

On February 13, my neighbor and I went to check out a medical marijuana dispensary really close to where I live. She’d told me about it – I hadn’t known there was one so close. I decided to put her on record at that place as my caregiver – backup if you will – in case my husband is not around and I am unable to go to a dispensary. My husband is on the list as my caregiver at another dispensary in Berkeley, so now I have two places I and my caregivers can go to.

The place looked as new and wonderful as the place I’d been to in Berkeley. There’s even a whole slew of rooms for massage, Reiki, yoga – all complimentary to the patient. How cool! At this new location, patients cannot medicate on site, like they can at the one in Berkeley. I also liked how this location wasn’t surrounded in barbed wire and looking like an armed compound from the outside, like the one in Berkeley does.

I talked at length with two different people about what might work best for my pain, and chose some pure indica strain marijuana, since I was told the butter was not very good there, and the only other edibles they had to offer contained gluten. I cannot afford a vaporizer right now, so I knew that I’d be smoking this indica strain out of a pipe. I was given a butter recipe so I can make the stuff myself, but I was warned not only by the staff but also by my friend that the entire house, and potentially the entire property would reek of marijuana in the process. Uh, I’m not okay with that. I hated it when my ex boyfriend used to make his rudimentary pot cookies (some weed and peanut butter slapped onto a wheat thin and baked for 20 mintues in the oven – yes it’s as gross as it sounds), because even that little bit of weed he cooked stunk up the entire apartment. I wonder now if it stunk up the entire floor and surrounding units…ugh…the poor neighbors!

So that was back on February 13th.

Eleven days later – last night – I got a chance to try out the indica for the first time.
When I got home from work, I decided to not take any Tylenol 3 – my drug of choice in battling endometriosis pain – because I wanted to try out this new round of medical marijuana.

When we got together with our neighbor last night to watch the latest episode of LOST, I asked her to show me how to work a pipe to smoke marijuana. Seems silly, but I’ve not smoked the stuff in at least eight years, and I’d never used a glass pipe before, so I wasn’t sure if it needed a wire mesh screen put in before the buds of marijuana was put in the pipe, or if it needed to be placed in whole or crushed, or what. So my neighbor showed me how to use her glass pipe.

I took two small hits off the pipe, and that was all it took to get me high. I didn’t want to do any more than that, because I wanted to gauge my personal dosage. I was high right away, but not experiencing pain relief. Sometimes the Tylenol 3 does that to me, so I let it go. I also noticed that right after smoking the stuff, my throat felt thick, and it was hard to breathe and swallow. I felt like my throat was closing up on me.
I didn’t get this reaction with the edibles, so I know it is a negative side effect from the smoke.
Another negative side effect is paranoia. I was hearing sounds inside the house that I thought were coming from outside the house. For example, the gas heater cracked and banged every now and again, and I thought someone was outside sneaking around, trying to listen in on our conversations…
Along with this paranoia came my inner demons. Insecurity, codependency and jealousy kicked up to levels I’d not experienced since I was with my ex-boyfriend. This is wholly unacceptable to me.

During that first hour on the indica, I noticed that I really wanted to stretch a lot, like I used to do whenever I consumed ecstasy. Every time I stretched my arms up or arched my back, I got a lot of pelvic pain. But my body needed to stretch, it didn’t want to be in pill bug stance. But stretching brought on the pain.

While on the indica – although I knew I was in pain, the message being sent to my brain was slightly dulled or delayed in registering the pain.

Compare with January 30th – my first test run of medical grade marijuana made into butter – in which the pain completely went away for an hour and a half. That was a sativa-indica blend. However, last night, just like on January 30th, I still got too high for my comfort, and did not like having to ‘take a trip’ just to get some pain relief.

My experience last night was similar to my experience on January 31 – I could give a detailed report as to how the pain felt. I was really high but could still feel every bit of the pain. I had moments last night where I was completely dissociated from the pain, but it didn’t last long. When we got home after watching TV with our neighbor, I began nearly uncontrollable nonsensical babble. I’m usually able to keep this at bay – it is a nervous tic of mine – but the marijuana kicked it up fiercely. I do NOT like that. I do not have Tourette’s Syndrome, by the way. This nervous tic began after I sustained a head injury in a head-on auto accident in 1994.

This morning, my alarm went off for work at 6:30am and I knew I’d be in too much pain to go in today. I hit snooze a few times before crawling out of bed at 7am. The pain ramped up to a 6.5 on the pain scale within minutes, and reached 7.5 within an hour.

I prepared the pipe my neighbor loaned me, and went out to the backyard to take a hit. I started off with one small hit and held it as long as I could, then slowly walked back to the house. I was stoned immediately, and could still feel the pain, which as I said, was a 7.5 on the pain scale.

Around 10:30am, I walked to the backyard again and took a big hit from the pipe. I held it as long as I could, and staggered back to the house, high as a kite. I tell you, I had the same experience as last time, where I was ready to break from the pain.
My entire pelvic region was angry and inflamed, and were I not high, I would definitely be crying from the pain. However, being as high as I was, the pain signal was somewhat muted. It still reached my brain, and I still felt the pain, and I still knew the pain to be severe, but my brain wasn’t receiving the signal in a crystal clear fashion. That is thanks to the marijuana, but also no thanks. I don’t want slight dissociation. I want full pain relief!!!

The nonsensical babble kicked back up again this morning after the first hit, and of course got a lot worse after the second hit.

I tried to get some sleep, because the marijuana incapacitated me, but I whined in pain on the couch. I then crawled into bed, thinking it would be more comfy, there.
It wasn’t. I writhed in pain in bed for minutes on end. I cried dry tears – sometimes the pain is so bad that I’ll cry, but no tears spill out. Finally, I drifted off to sleep, and drooled like an infant. It didn’t last long.
I woke from the pain again only 15-20 minutes later, and had to relocate back to the couch again.
No position was pain-free for me.

I want to also note that once again this morning, on both hits off the pipe, it was again hard for me to breathe, and my throat felt thick, like it was closing up on me. I did actually cough and gag after a short time, and I nearly threw up. I had to open my mouth and consciously remember to breathe and open my throat. This forced conscious breathing lasted for two hours, and was quite annoying to have to maintain.

Around 2pm, I declared myself not to be so high anymore, and so I split a Tylenol 3 pill in half and consumed it. The pain still did not abate. Nearly an hour after that, I took the other half of the pill.

By 3:30pm, the cramps finally went away – completely – and this was due to the Tylenol 3 – not to the medical marijuana.

I hopped on chat and told my husband that I’d just completed Round 2 of the medical marijuana testing, and had fired it again.

This could be it for me. If I am even willing to go for a Round 3, I will give the vaporizer a try – IF I can find someone willing to loan me their vaporizer, or IF I can take the indica I purchased to the dispensary in Berkeley and use one of their vaporizers. But honestly, I really don’t want to chance enduring another day without relief from the pain when the pain gets to or near 8 on the scale.

I must also note that on February 18, 2010, I saw my acupuncturist again, and she presented me with a new round of herbal medication to try. This is in powder format, and consists of the following ingredients:

Today is my trial run with the new herbs. I have been taking this powder with hot water as a tea, and have consumed it twice so far today. Each time, I use only a teaspoon per one cup of hot water. So far, I’m really noticing the diuretic effects of the tea.

Right now, I’m on another round of Tylenol 3. This time, I consumed an entire pill. I am dissociated from the pain in a way totally different from marijuana. With the Tylenol 3, much of the pain is eliminated, and any remaining pain is detached – I know it’s there but its signal to my brain is severed. I can’t give you a full report of the pain, because it’s not nagging or annoying me. With the marijuana, the pain is muted, yet still nagging.

Also with Tylenol 3, I am high functioning. I am not knocked out from it like I am knocked flat and stupid after only one hit of marijuana. I am not rendered mentally ill with insecurities, jealousies, and babbling. I am able to carry on conversation; I am able to do online research and type up my journal post. I cannot do any of that on marijuana – I’m too busy staring off, drooling, and moaning from the continued pain.

Tylenol 3 remains the only medication I can use, which provides excellent pain relief and causes very few side effects. Of course, the one big problem with the Tylenol 3 is that using it every month for the past 5-6 years, it is in fact slowly destroying my liver.

Two days early

Hoo boy. I need to do a sum-up. I’ve been noting all the details of my health in another diary that I keep. It hasn’t had anything to do with endometriosis, so I’ve not been spewing it, here. However, I’m in full on pity-party mode, so I’ll share some details here. The best way to get across how I’m feeling will be in visual format (click image to make bigger):

february2010

I’ve not had a day where I’ve felt alive and well since January 22 – a full month ago.

The red dashes through calendar dates means I missed work that day.
Anything in purple text denotes multiple chemical sensitivity reaction or danger of reaction. The oil spill remains a ‘danger of reaction’ since I have not had anything immediate happen. I went to the doctor’s office on Wednesday, February 17, because when I’d tried to go back to work that morning, it felt like my lung was collapsing. The chilly morning air and the thick fog made my lungs ache badly and it became hard for me to breathe. I looked pasty white. I barely fixed my hair to go to work, I was so sick. I turned right around and came back home because my lungs hurt so bad and I was having trouble breathing. I was able to get into the doctor’s office at noon that day, and saw a different doctor. She listened to my heart and lungs. She said I have ‘junk’ in my lungs, and that I was wheezing. She gave me my first ever albuterol treatment (nebulizer delivery).
Although it cleared my lungs and made for velvety smooth breathing for the next six and a half hours, the ingredients in the albuterol treatment also made me very light headed, gave me tremors, and removed my ability to concentrate. I darted my eyes and head around and had anxiety all day long. I told the doctor I can’t work in that state, and that the treatment is no better than the illness itself. I opted to stay home another day.

When I got back home, I found Alameda County Industries vehicles all over the intersection near my home. They were shoveling a sand like material onto a spill of some sort, which was all up and down two streets and filled the intersection. I saw a garbage or recycle truck with its hazard lights on. I went over to the working men and asked if it was hydraulic fluid that had spilled. They said it was. They assured me that the sand they were putting down was harmless, and was like ‘kitty litter’.

Please google hydraulic fluid toxicity to learn more, and also check out a news story about a woman who died after a similar accident.

I have also uploaded photos here. My lips were stinging when I got back into the house last night after taking pictures. I should have worn a mask of course. Of course.

I shed all my clothes in the kitchen and put them in a garbage bag. I took a shower immediately. Thankfully I did not have any immediate chemical sensitivity reaction to the spill. Only time will tell if I will become sick from the spill.

On top of all the viruses and multiple chemical sensitivity crap, now my period is two days early after I’d declared to my husband that I was sure it would be late, since I was not feeling any premenstrual pain. Nothing – no warning cramps, no having to check myself because it ‘feels’ like I could be bleeding. No ovarian stabby. Just HELLO! an hour after I got home from the doctor’s office.

The thing is, I *did* have some premenstrual cramping last Thursday – after my acupuncture appointment. I’d seen the acupuncturist for the sinus infection, but while there, she did some lower back work on me, cuz she knew my period was coming. That night, I felt low, dull pain in the lower back and at the back of the uterus. It was barely registered on the pain scale though – just faint rustlings.
On Friday, I had some slightly more annoying rustlings, but still, I did not need medication. Then on Saturday and Sunday I had no pre-menstrual cramping at all, most likely because my body was busy dealing with a yeast infection, which I get every single time I take antibiotics.
Please don’t tell me to try eating yoghurt or probiotics when on antibiotics, I already do that. Please don’t tell me to keep hydrated when on antibiotics, I certainly do that. I still get yeast infections, every time.

I decided to get a one-day Monistat™ treatment. I did that Sunday night right before bed.

I woke in the early hours Monday morning to use the bathroom. I wiped and … something wasn’t right.
My inner labia were hanging way down past my outer labia, and they were thick; puffed out, and stiff as boards. My heart jumped. WTF is going on!?!?
I wiped again, and the labia let me know they weren’t happy. It stung – it burned. I could feel my pulse in my labia.

I phoned up my family doctor and my gynecologist and left messages. I decided to not outright openly panic, so I got ready for work. It hurt to wear slacks, or tights, or even underwear for that matter. It hurt to sit down of course.

I went to work anyway. The doctors offices called back – the gynecologist wholly misunderstood my voicemail and told me I should try Monistat or Diflucan for my yeast infection. The family doctor got me an appointment after work.

By the time I got out of work, the swelling in my labia had gone down considerably, but it still hurt and pulsed with discomfort, so I went to the doctor. He did an external exam – not a pelvic – to examine the labia. There’s nothing he can do – just have to wait for the swelling to go down. I told him I discontinued use of the antibiotics. He said that was fine.

I got home from the doctor, and before dinnertime, discovered that my period had arrived without warning.

So now that george is here, I will go to bed and see what tomorrow brings – will I be able to go to work, or will the pain leave me bedridden?

Stay tuned…

Worsening fatigue and emotional state

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

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

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

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

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

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

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

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

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

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

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

The pre-doom special

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

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

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

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

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

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

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

Goodnight!

Monday – feeling better

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

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

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

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

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

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

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

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

Radix Angelicae Sinensis
Radix Peaoniae Rubra
Radix Rehmanniae
Radix Glycyrrhizae

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

When the pain seeps through the meds

I woke a few times in pain during the night, and generally shifted uneasily in bed for much of the night. Each time the pain woke me, I pressed on the seeds that my acupuncturist had taped to my ears and abdomen to remind me of my pressure points.
The pain reached searing level by 6:45am. Pressing on my abdomen just made me want to scream. I got out of bed and felt nauseated from the pain.
I popped a Tylenol 3, but it did little good. A half an hour later, I took more Tylenol 3 (a half pill this time), ate some leftover gluten-free pancakes with jam, and drank some goat milk.

The pain medication kicked in to make me stoned, but the pain remained for a bit. I was not able to return to bed until around 9am. I napped for nearly an hour, and was startled awake by my cat letting out a sudden, jarring howl. I’m guessing he’d glimpsed himself in the closet mirror again or something. He’s a bit insane.
His howl startled me, which set off an endorphin rush, which in turn flared the cramps.

It’s two hours later and I’m just now ready to head back to bed. The pain had been too intense to sleep until this point. Now the pain is at about a 7 on the scale, and I have a codeine-headache, but I think I’ll be able to sleep for a bit.

Edit: I was able to get back to sleep, and woke up at 2:30pm with a pounding headache, but at least the cramps were gone… :/
At 6pm I still had a pounding headache. I cannot remember how much Tylenol 3 and Ibuprofen I took, but I didn’t want any more of it, so I tried some Jasmine/Green tea, which is caffinated. That worked, and my headache went away.
I went to bed again around 10pm, and woke up sometime after midnight with excruciating low back pain and a new round of cramps. I stayed awake and created my “Doctors I have seen” page, which I’ve been wanting to do for awhile. Interesting, eh? Fifteen doctors in nine years. As I wrote on that page, the high doctor turnover is common with endometriosis patients, because doctors think we are drug seeking, or they don’t believe our pain, or they misdiagnose us, or they present a type of treatment we feel is wrong for us.