I Will Not Suffer In Silence

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.

I just went for a slow 1.5 mile walk with my husband! I haven’t been out of bed due to the pain in 2.5 days, so this is a HUGE accomplishment! We were talking about what to do after dinner, and my legs were restless and twitchy. I began doing slow stretches and my husband said he’d be up for a walk if I was.
It took awhile to get some street clothes on, since I’ve been in pajamas for the past two and a half days. I was winded just putting clothes on, so I felt a bit nervous about venturing out. I took my water bottle with me, and my medication.

We walked down to the beach and stood looking out at the water and the San Francisco skyline. We watched planes coming in for a landing at Oakland airport. After standing for a bit, we walked along the recreational trail just off the beach, and then cut through the shopping center to come back home again. I’m seriously exhausted, some of the pain returned on the walk and I had to take a Tylenol 3 (plus, it was time for my next dose), and my legs wanted to stop moving one in front of the other for the last half mile, but I did it!

Now I go to bed. :)

As of today I have been bedridden for two and a half days. I have missed two days of work again. The hours blur into each other – I can’t believe I can say I’ve missed two days of work. I swear it feels like I just got home from work…but that was Wednesday afternoon. Right now, it’s Friday afternoon.

Hi. That’s me. I look so much older when the pain has been beating me up. You can actually see a progression – I’ve been keeping track:

If you mouse over the Daily Mugshot photo above, a set of controls will appear, and you can pause the stream and even go forward or backward manually through the photos.

Today the endometriosis pain is hitting at my bladder much harder than it was yesterday. Today it’s ALL bladder.
If I didn’t have confirmed endo on the thin tissue between the bladder and the abdominal wall (bladder reflection), I’d seriously think I had a bladder infection.
With the pain in this location, the Tylenol 3 isn’t doing as well as it usually does. The pain is not blotted out.
Sure, the pain is dulled by the Tylenol 3, but it’s still nagging. It’s 1pm and I’ve had two Tylenol 3 pills already today. I’m ready for another. I just took 600mg Ibuprofen to augment the Tylenol 3.

It’s hard to do anything. I can’t sit or lay down for too long because the bladder is so angry, I have to keep getting up and going to the bathroom. Makes it hard for the drugs to keep me knocked out, when my bladder is screaming through the drugs, “HEY! WAKE UP! OMG I’M GOING TO EXPLODE DOWN HERE!”

Ugh.

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:

• Cinnamon
• Lindera Root
• Cortex Moutan
• Red and White Peony
• Cyperi Rhizome
• Safflower
• Cat’s Tail

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.

I woke Tuesday morning with no cramps! I checked to be sure my period had actually started. Well, there was bright blood, and it was within a few days of the start date, so it had to be my period, right? I got ready for work, marveling at my body. I have to admit, I had a little smile on my face. I was truly enjoying this no-pain thing.

At work Tuesday morning, I only got the slightest of cramps. As soon as I began to think, “oh no, I feel a tinge of pain, the cramps could get worse any second…” I immediately quashed that thought and replaced it with, “Oh wow, that’s SUCH a tiny pain, I am so happy I can function!” And I’d smile again. I started thinking, “This must be what it’s like to have a ‘normal’ period!”

All day Tuesday, nothing – just teeny tiny rumbles of pain every now and again. The most pain I felt was while having to rub a child’s back for naptime at work – I have to sit on the floor, and the child is on a thin nap mat on the floor. I used a pillow chair but it was still uncomfortable. So the pelvic pain did make itself known while sitting low on the floor.

You have to realise though that it wasn’t just the lack of pelvic pain through most of Tuesday – I also was not feeling the usual joint pain or the extreme fatigue that I always get with each endometriosis cycle or ‘flare’. This definitely was not starting off as one of my ‘normal’ periods. Since I have been in debilitating pain from endometriosis for about the last 24 years now, I know full well what the behaviour of my illness is. So I began to wonder if the blood wasn’t from menstruation/endometriosis at all – I wondered if it was instead from the yeast infection and having taken a Monistat treatment two nights prior, which I’d had really bad side effects to. The swelling in my labia had gone down quite a bit by Tuesday, but what if the blood meant there was internal damage from the Monistat? Every time I used the bathroom on Tuesday, I’d notice that the bleeding wasn’t getting any darker, nor was it becoming more of a flow. It was still bright red/pink, and there were long, stringy clots – also not the usual for me. Blood clots during menses for me are usually really dark red, squat and thick.

Tuesday night, when my husband got home, we went out into the pouring rain to get some groceries, so that we’d be well stocked in case I did become bedridden. While out grocery shopping, my blood sugar took a dive. I’d spent Monday and Tuesday eating and either still being hungry, or becoming hungry again within an hour of eating. That is ‘normal’ premenstrual behaviour for me, as is becoming hypoglycemic.
Eating dinner when we got home brought my blood sugar levels and thusly my mood back up again.

When I woke on Wednesday morning, I had minor cramps. Since I count the day the blood shows up as Day 1 of each menstrual cycle, I was now on Day 3, and I still was not experiencing debilitating pain. Again, I wondered if the bleeding wasn’t from the infection and/or the treatment. I wondered if I’d know if my period really did show up, and would it show up Wednesday, as originally thought?

Around 11:30am on Wednesday, the bleeding and pain began to ramp up a bit. I checked myself in the bathroom and saw that the blood had begun to darken. My legs felt funny – they were weak, especially at the top of the thighs. For me, this usually means really bad cramps are coming soon. I hadn’t had the leg pain or weakness until now, so I took this to mean that my menstrual cycle had officially hit the green light.
By 1pm when I took my lunch break, I required 600mg of Ibuprofen gel-caps, and it didn’t really help all that much. I notified the teacher I was working with that day that I was in pain and might not make it through the day. I asked if she knew what endometriosis was, and she said yes, and showed sympathy for me. She told me to sit down and take it easy. The class (I was working with the 1st and 2nd graders that day) was watching a marine life documentary, so thankfully all I had to do was sit there, or stand there as the actual case may be (sitting was too painful) for the next hour, until class was dismissed. After the first half-hour documentary, the children began to get restless, so I had them all stand up, shake their bodies, stretch way up high, and then sit back down to watch the second and last documentary on ocean life.
The stretching up high thing…I should not have done that. It spiked my cramps to a 7 on the pain scale for a few minutes. Ouch. I stretched slow, like one does in the morning when getting out of bed, yawning. But george didn’t like that.
At 3pm, I organised the children who were to be picked up by their parents and herded them out the door. After parents picked up their children, I headed to the playground to see if I’d be needed for after school daycare. Thankfully, I was not needed, and I went home.

Wednesday afternoon/evening at home, I took it easy on the couch. Around 7pm, I ate another 600mg Ibuprofen gel-caps, and slept on the couch, and for a little while I even went to the bedroom to nap. My fatigue had grown infinitely between noon and 7pm Wednesday – pain takes a lot out of a person and makes one very tired. Ibuprofen also makes one a bit tired, and I had consumed 1,200mg of it within a six hour period.

And that’s where I’ll leave it for now, cuz the next part of my story requires some background info, and this post is already too long. I’m working on making shorter journal entries from now on…

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):

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…

Wow, déjà vu.

Just like last month, I went from being bedridden with endometriosis to being sick with a virus.

Once again, I’m kicked when I’m down, thanks to my immune system being deficient, thanks to endometriosis and allergies and lord knows what else I have going on immunologically.

Friday night I was at a taqueria eating dinner with my husband when suddenly I didn’t feel well.
That night, I had 3 episodes of diarrhea. I was uncertain whether it was a food reaction or food poisoning.

On Saturday, I had 17 episodes of diarrhea. I was more certain that it had to be food poisoning, since I’ve never had an allergic reaction this bad before. I barely ate a thing that day, and it was a struggle to even take water.
My entire trunk region was sore. I felt like I’d been doing too many situps – the stomach muscles were strained.
My husband took me to the store, and I am not kidding – I bought baby wipes and diaper rash cream for myself.

On Sunday, I began eating Cream of Rice with mashed banana. However, Sunday evening, we were at a friend’s house and he’d made some wonderful food, as did his other guests. I partook of a thin slice of steak, some kielbasa and onions, and some cole slaw. I drank a Vernors soda, even though it has corn syrup in it, because where I grew up, Vernors is what you drank to soothe an upset tummy.
Within an hour and a half, I had moderate to severe stabbing stomach cramps. I had to steel myself from the pain. When we got home at 9pm Sunday night, the diarrhea began – 8 episodes of it.

Today is the second day in a row that I did not have diarrhea upon waking. Today is the second day in a row that my stomach and intestines tried to stabilise – until I fed myself something other than Cream of Rice with mashed banana. This afternoon it resulted in moderate nausea and stomach and intestinal gurgles. I’m worn out. I’m tired as hell. And I worked a full day today on top of it.

I didn’t want to go in to work today, but I was still partially in denial about actually being SICK sick…even though on my way to work, I called to cancel my appointment with a physical trainer. To be fair, I took my temperature at work and it was 99.8°F at 11am. I hinted that I should go home, but the director told me I was fine. The secretary told me I was fine.
What they meant was, “Lunch rush is coming up in the next half hour, and we’re short staffed. You have to stay, we need you.”

I did stay on, but that’s when I called my doctor and scored an appointment after work. The doctor told me that it’s not JUST a food reaction I’ve been having, and it DEFINITELY WASN’T food poisoning.
The doctor is certain that I have an enterovirus. She said it’s going around – she’s seen patients with my exact symptoms for over a week, now.

I know that what’s going on with me IS also a food reaction on top of the enterovirus, because my left thumb is covered in flaky dermatitis, and my thumb is cracked and will probably start bleeding tomorrow.

According to MedScape, I was harbouring the enterovirus for up to a week before the diarrhea hit me on Friday. It says, “The average incubation period is 3-10 days, during which the virus migrates to regional lymphoid tissue and replicates. Minor viremia results, which is associated with the onset of symptoms and viral spread to the reticuloendothelial system (spleen, liver, bone marrow).”

Another MedScape article says, “The enterovirus enters the human host through the GI or respiratory tract. The cell surfaces of the GI tract serve as viral receptors, and initial replication begins in the local lymphatic GI tissue. The virus seeds into the bloodstream, causing a minor viremia on the third day of infection. The virus then invades organ systems, causing a second viremic episode on days 3-7. This second viremic episode is consistent with the biphasic prodromal illness. The infection can progress to CNS involvement during the major viremic phase or at a later time. Antibody production in response to enteroviral infections occurs within the first 7-10 days.”

I could have caught it at my neighbor’s house when we went over there last Tuesday to watch the season premier of the last season of LOST.
I could have caught it from my new psychiatrist’s office on my first visit.
I could have caught it at work.
I could have caught it anywhere.

The bum deal out of all of this is that I went from being bedridden with endometriosis pain right into being laid out flat with massive diarrhea for three days. I lost two weekends of fun out of that deal. I didn’t get to see an old high school acquaintance who was in town for the weekend. Worst of all, I went out on Sunday to a party while still sick with the virus, because I was convinced it was food poisoning and/or food reaction I was still dealing with, and now I may have infected other people.

When I left out of the doctor’s office, it was raining, and I hadn’t brought my raincoat with me. I walked in the rain back to my car, parked a block and a half away. When I got home, I took a blow dryer to my hair, put some dishes in the new dishwasher my husband recently bought, scooped the cat litter, and got into my jammies and crawled into bed. I crawled out of bed to eat some yoghurt while my husband ate dinner – we sat on the couch and watched TV. Well actually I laid on the couch wrapped in blankets. Viruses make me feel like I’m freezing. The house is 71°F right now…

I’ll be staying home tomorrow – I made sure to get a doctor’s note the moment the doctor suggested I stay home. I called work the moment I left the doctor’s office to let everyone know I won’t be in.

Stupid immune system.

I guess if one can find a silver lining… I lost 6 pounds in 3 days. I’m down to 158lbs.

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.