I Will Not Suffer In Silence

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.

I was able to go back to work on Wednesday. I had minor pelvic pain and was spotting. I was slow moving and tired of course, being that I’d spent the previous four days hopped up on Tylenol 3 and Ibuprofen for all the pain. I survived the day at work, assisted by a total of 1,200mg of Ibuprofen. On my lunch break, I was asked if I could come back that evening for after hours daycare - I said yes because I’d already missed the previous two days of work and felt that I needed the money. It’s hard because my husband makes $80K/yr. I currently make about $18K/yr. That seems like quite a lot of money just from my husband’s income alone, right?
If we only existed on his income though, it would hurt in the state of California, which is quite expensive where we live (Bay Area). I keep saying we should move back to Michigan but one, there’s a lot fewer jobs, two, there’s snow, and three, my native-California-born husband is terrified of Michigan, calling it a cross between Deliverance and Blair Witch Project.
And so here we are, living in sunny California, and I am in my first year as a Montessori teacher, working for peanuts to add to my husband’s income so that we can live comfortably.
Don’t get me wrong, I couldn’t NOT work. I’m too much of a spazz to be left on my own all day. I just couldn’t do the housewife thing.

On Thursday, I got moderate pelvic stabbing pain beginning after 4pm (thankfully after I was out of work). I was still spotting bright red, and began to seriously wonder if the last gasp hadn’t occurred on Tuesday and was laying in wait.
Thankfully, I was wrong. The last gasp had in fact happened on Tuesday. What I was experiencing on Thursday was probably due to not having slept well Wednesday night, working a full day on Thursday, complete with a lice outbreak I discovered at the school and me having to be the one to inspect the entire rest of the class’ heads for lice because the head teacher was too wigged out to continue class at that point (thankfully, only the one child had it and was sent home immediately)….and after all that I zoomed across the Bay Bridge to try to make it to my friend’s arbitration meeting in time, and I got a bit lost on San Francisco’s rush hour streets. Just a wee bit of anxiety that day…

Have I ever mentioned how much I hate driving in San Francisco?

I really hate driving in San Francisco.

I guess I could have taken the BART to The City and walked from the station to the arbitration appointment.

Have I ever mentioned my fear of taking public transit alone?

I really hate taking public transit alone, because I’m afraid I’ll get lost. Getting lost as a pedestrian is even more terrifying to me than being lost while driving.

I got through Thursday but came this close to a panic attack after it was all said and done. I nearly ended my sobriety, but thought the better of it and made myself some bedtime tea when I got home. More and more, my body is rejecting the things I’ve loved to eat and drink, be it through allergies or be it through hormonal imbalance setting off more pelvic pain. I can’t really go back to drinking wine or liquor because of the immediate side effects from sulfites, glutens, bad distillation, immediate ovarian and/or uterine cramping (mild but enough to make me uncomfortable)…it all makes it worthwhile to just stay sober for once in my life. I spent too many years as a weekend lush, out at the nightclubs, drinkin and dancin til I blacked out. Yeesh.

I didn’t get to bed til 11:30pm last night, and I didn’t want to get up for work today, because my head teacher was out of town and I knew I’d have to run the entire class on my own.
I did it though! I did it! I managed 17 first and second graders through their scheduled curriculum today, woohoo! And they behaved well for the most part!

At the close of the day today, I was suffering headache because I hadn’t had time to eat lunch, and I hadn’t been drinking enough water. My low and mid back were screaming in pain as well, probably because I was so nervous at having to run the entire class on my own with occasional help when the afternoon supervisor had time from her busy duties. All the teachers are stretched at this school right now. I’m thankful I had help at all. Another teacher came in towards the end of the day and took some papers for grading off my hands. I need to get that woman a gift for that.

So I am sitting here on the couch, my first day no longer spotting. I am still hugely tired and cannot go near a gym until at least Sunday. I am still freezing my ass off, even though it is 70°F in the house.
Despite that, I declare Friday, March 26, 2010 the day I START THE CLOCK for the next cycle, because I’m no longer in pelvic pain, and no longer spotting enough to wear a pad.

The clock is set; I have 18 - 19 days before the next cylon attack bedridden time.

It is the weekend - a weekend I will get to enjoy because I will not be bedridden! Tomorrow is supposed to be sunny and 71°F. Ahhh, bliss.

The old guilt is back again, because I have to take another day off work for the pain. Let’s back up a day though, so I can catch you up on Monday.

I knew Sunday night I wouldn’t be in any shape to go into work on Monday, so I’d made the necessary calls. The pain woke me up before 8am on Monday, and I had to cram food down my throat to line my stomach in order to take my pills. I started off with one and a half Tylenol 3 first thing in the morning because of the pain. I had decided that due to the pain level (8.5 on the scale), I would be better off in bed than on the couch with the laptop. My husband was getting ready for work and was off in the shower. Me being impatient, I decided to set up for a day in bed despite being in a lot of pain. I was clutching a heating pad with one hand and moving blankets and such with my other hand. I decided this would actually make a great video - detailing that it’s hard work on a person in pain just to set up for a day in bed if one still wanted to have a connection to the outside world. I did a video outtake and settled into bed, exhausted. I think I fell back to sleep at that point, I can’t remember.

Within the first few hours in bed, my lower back and buttocks decided they could not take the pain of sitting in bed. I moved to my computer chair at that point. This is unusual - my body normally cannot handle sitting upright when I’m in so much pain. But the lower back really needed the support of a chair.

I spent much of the day wrestling with iMovie ‘09 on the laptop before launching iMovie ‘05 on my desktop machine and figuring that out much faster than iMovie ‘09. I had created a video back in February to update everyone on the past year of my life - it’s been that long since I uploaded any videos to youtube!! And now it’s taken another month on top of that to figure out all the edits I wanted to do for the movie. The end result is that I’m getting much better at making videos.

I ended up taking three Tylenol 3 and 600mg Ibuprofen over the course of the day, yesterday. I stayed as constantly medicated as I could. By the time I went to bed late last night, the bleeding and the pain had subsided. My kidneys were throbbing from all the Tylenol and Ibuprofen I’d fed them.

This morning I woke up with a headache and stuffed up ears, full body sore joints, and a feeling of dread in my pelvis. I ate some leftover pancakes, drank some goat milk, took a half a Tylenol 3 and 600mg Ibuprofen and called in sick to work, expecting the worst. And then extreme fatigue claimed me and I crawled back into bed and slept for another three and a half hours.

The pain woke me at 11:48am. I cooked some leftover yummy Thai food my neighbor had brought me yesterday out of the kindness of her heart (my inner Southerner says “bless her soul”), and before I could eat, the bleeding and pain started up again as I knew it would.

I’m on round 2 of a half Tylenol 3. The joint pain is still flaring, and my legs are bloated to the point of feeling very sore from the thighs to the ankles, and especially under the knees. The bleeding didn’t get as heavy as I thought it would, and the pelvic pain didn’t get as bad as I thought it would. It spiked at about a 7 and is now down to 5.5 on the scale.

My guilty conscience says with pain at a 5.5 on the scale, I could have gone in to work. But then I snap out of the guilt and remind myself that I’m still on Tylenol 3 and Ibuprofen to manage said pain, that’s WHY it’s at a 5.5 on the scale. AND I’m not stooping and bending, kneeling, sitting and walking like I would have to do at work. So I can cut the guilt crap out RIGHT NOW. I don’t work no desk job anymore.

So that’s where it’s at today. I wish the waiting lists weren’t so long at the dispensaries to get free reiki or body work done. I would LOVE a full body massage right now. Le sigh.
Maybe I’ll find enough strength to scrub out the tub to take a hot bubble bath.

Oh - side note - I’m back on the herbal powder my acupuncturist gave me. We decided to give it another try, see if my body has reactions to it. So far so good. I’ve been drinking it 3x/day using a teaspoon of the powdered herbs. As for other pain management, I’m still doing large hip circles, slow stretches, and basic yoga poses.

Lastly - the weather. This is the third sunny day I have missed enjoying during this cycle due to the pain.

I’m still convinced the horrible pain I was in last Saturday was a ruptured ovarian cyst, because the bleeding took so long to begin this cycle, and it’s very thick and dark. I slept for about nine hours and woke at 12:30pm yesterday. I was still barely spotting and was not experiencing a lot of pelvic pain. I should have been jumping for joy, right?

Instead, I began fretting over Time.
I was due on Friday. I’m usually on time. Descending to the underworld full speed ahead Friday morning would have meant that by Sunday night, most of the pain and despair would be over with, and I’d have a good chance of returning to work on Monday.

But no. The pain and bleeding ramped up late Saturday afternoon, so that means I have Saturday night and all day Sunday to get this endometriosis cycle out of the way before Monday 8am.

Fat chance.

I hate taking time off work every goddamned month for this illness.

I’ve been fired from two jobs because of this illness, and although I’m assured on the current job that I’m special, needed and wanted despite my illness, I still suffer the PTSD from those two other jobs. One harassed me for months before firing me. One harassed me for a couple of weeks - I quit 2 days before they were to fire me cuz someone leaked it to me.

I hate that I barely make enough money to even try pulling any financial weight around the house. Missing work gives me that much less money to work with. It may as well be babysitting money. I cannot cope with not being able to go halfsies like my husband and I used to do. He assures me it’s fine - that he’s so happy to see my sanity restored by working with kids again instead of in corporate hell. He keeps gushing about seeing all the kids that ran up to the fence Friday afternoon to say goodbye to me as I left work for the weekend. I call them my fan club. ;)

And those poor kids - I currently assist a class of mixed first and second graders. One of their teachers has been out sick for over a month - she’s got something serious and the staff’s not talking much about it. Could be cancer, could be lupus - it’s definitely taken out her immune system and she’s been having surgeries. I spent 3 weeks in that class with the co-teacher, and now I might be out sick for a day or two. The kids can’t take much more upheaval. Some of them were literally sobbing when their teacher came by for a visit Thursday afternoon, they miss her so much.

So it’s pretty obvious then - I don’t like letting people down - and having endometriosis means I will miss work, I will miss parties, I will miss appointments, I will miss out on life. I’ve been meaning to chronicle how many sunny days I lose to endometriosis in a year. It was in the 60s and mostly sunny today, and I couldn’t be out in it to walk around, bicycle, go hiking, because of the pain.
If I can make what I go through as concrete as possible to people, I think that might help quicken the pace towards a cure - more people will demand and fund more research to find a cure for endometriosis.
Education and awareness - it’s a small bit of hope I have.

Today I feel severely tired. I had a rough day at work wherein the students were all spazzed out over ‘wacky hair day’ and the knowledge that they do not have school tomorrow (staff-only day scheduled). I talked til I was out of breath trying to regain control of the classroom on several occasions. I was in charge of the first/second grade classroom today, because the head teacher overslept and didn’t come in til almost 11am.

Still, before leaving work, I thought I’d still make it to the gym. I joined a gym in late January, then spent all of February sick as a dog, so March is the first time I’ve been able to make use of my gym membership. I have been three times, and was supposed to go again today. However, I got home from work and all I wanted to do was cry and go to bed.

I didn’t end up crying, but I did crash on the couch for about 40 minutes, and since waking, I’ve not recovered any energy.

My husband made me dinner, thankfully, but still it did not do anything for my fatigue. Now I must note that I’m really surprised by this - this level of fatigue, where I literally want to just fall down from standing position and start snoring - that is special only to menstrual fatigue. It happens to me a couple days before my period, and happens for up to a few days after my period. I have had no notable pelvic pain in the last couple of days, but I did have pain back on March 6, five days after I’d stopped spotting, and on March 8, on the day I would typically ovulate. What was weird about the pain on those days was that it was not ovarian, so I probably was not ovulating. It was really low on the uterus, and near or on the bladder. I seriously felt like I had a urinary tract infection on March 8, and I had to take 600mg of Ibuprofen gel caps at work to stave the pain.

This bone dragging fatigue - my eyes are drooping even as I type and my whole body feels so very weak - this alarms me and makes me think my period may be sooner than next Friday, March 19.
If my period is early, then I won’t have had 19 days between downtime cycles - I will have had less than three weeks between the bedridden times.

I mean, as it is, I ended my period, then got pain again five days later, then again a couple days after that. So I haven’t had consecutive pain-free days between cycles. And when you look at the calendar, you see that I stopped my period, I got some pain the week after, and then a week after that, I am already due for my period again. That’s not fair, is it?

Here’s hoping it was JUST the kids having wiped me out today.

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.

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…

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.