I Will Not Suffer In Silence

Let’s start with a review:

My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.

My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.

I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.

In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.

Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.

Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.

On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.

On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.

Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.

So the ovarian cyst took a back seat to a new health condition; asthma.

I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.

The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.

My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…

In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”

Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.

For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).

So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.

What I got instead was really bad news; an endometrioma does not reabsorb or go away.

Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.

An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.

I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.

We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.

My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.

I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.

So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.

(Reposted from Facebook)

 
December 10, 2011 at 8:11pm via mobile
Spent the day drugged to the gills on Tylenol 3, but at a friend’s house playing my first ever Call of Cthulhu game. Bonus – one of the gamers is an acupuncturist who did some work on me during game!
It’s pretty awesome when your friends allow you to play the game while doing various pain management stretches and maneuvers. The lady of the house even had a heating pad for me! ♥

 
December 11, 2011 at 12:36pm
Yesterday after gaming with friends, my husband drove me to my tattoo consultation. Still drugged with pain meds, I walked baby steps from the car to the tattoo parlour. The tattoo artist and I discussed the piece and made some changes, and then I bought a pair of wooden earrings. I’ve been wanting to change out all my jewelry from metal and plastic to natural wood and stone jewelry. One of the women at the shop misjudged my earring size, and I ended up with a stretch nearly a gauge in size. I was about 6ga – she took me to 4ga when she put the wooden earrings in. However, the resulting endorphin rush had a positive effect on my endometriosis pain…as in it nullified it for a couple of hours!

YAY!!! I was even able to walk up a San Francisco hill to get back to the car. Holy crap, you have no idea how cool that was. I should do endorphin pain management as endo treatment every month.

 
December 11, 2011 at 3:57pm
(Attempting to keep some positive thought up)…

Something that I have done which you may not have:

I have ridden on a donkey in a Bedouin village near Netanya, Israel.

So I made it to the end of August. I only missed one day of work (on August 8, during the last cycle).

I’m starting off September by missing half a day of work on the 1st. I am likely to miss the entire day of work on September 2nd. I cannot reach anyone to sub for me for the whole day, though one teacher said she’d cover me for the early morning daycare-before-school-starts shift.

Yesterday was the first day of george. Right as I was about to go out the door to work, the cramps began, so I did actually take 600mg of Ibuprofen before work. Then I began spotting while at work, but I still made it through an entire work day.

The pain ramped up last night while I was at a friend’s house checking out their place for party space for my upcoming birthday. I took half a Tylenol 3 but the pain and bleeding kept ramping up. When I got home, I think I took a whole Tylenol 3 and went to bed. I can’t remember.

This morning, despite the pain and bleeding, I ingested 600mg of Ibuprofen again and went in to work. I lasted til 10:30am, when I could stand it no longer and took a half Tylenol 3.

An hour later, with the pain still ramping up and nausea also welling up, I quit five minutes before my lunch break. I went in search of people to fill in for me for the rest of the day. I shuffled around the building, found two people to help me out, and listed the gaps in coverage for the secretary to help figure out the rest, and I came home.

I ate a full Tylenol 3 with my lunch at 12:30pm, and was bedridden from 2:30pm – 7:30pm.
Whoops, this means I completely missed the appointment with my shrink.
I’ve been groggy and couch-ridden for the rest of the night. It’s 9:38pm now and I’m just now entertaining the idea of dinner. Normally I’m prepping for bed by now.

I’ve already notified everyone’s voicemails that I likely won’t be in tomorrow.

Sad, disappointed and depressed describe my current state of mind. I wasn’t bedridden in February, March, April, May or June. I was couch-ridden from the pain in July and August, and now officially bedridden and couch-ridden in September.

The caffeine and sugar have got to stop. I’ve said this before. I know what a huge challenge this is for me. I might even need to go vegetarian again. My caffeine intake rose sharply at the end of June, so I am definitely blaming my rekindled addiction for part of the pain. Caffeine is a known inflammatory agent. I reintroduced white meat (birds only) towards the end of May or sometime in June. I’ll cut caffeine and sugar, first, then wait a few months to see what all evens out before deciding if meat has to go again, too.

Stress management is also key, but I’ve already set that in motion with the Alexander Technique and Yoga classes, and the monthly acupuncture (too bad I can only get monthly acupuncture through the dispensary, but I’ll work with what I’ve got available). I just need to remember to also add in the daily progressive relaxation tips again.

This too shall pass.

During this month’s uptime, I accomplished the following through the Prop 215 dispensary:

• Attended two Alexander Technique weekly classes.
• Attended one Iyengar Yoga weekly class (I would have gone to a second class but work held me over)
• Got free acupuncture

 
During this month’s uptime, I accomplished the following:

• spent several hours aboard the U.S.S. Hornet walking around, ascending and descending stairs, and sitting on hard floors
• attended two going-away parties back to back
• got reeeeeeeally drunk
• went to the circus for father-in-law’s birthday request
• bicycled to work three days in a row, for a total of 8 miles
• went for walks
• continued my yoga lessons nearly every night before bed
• helped pack away a classroom of its summer theme and helped prep it and another classroom for the coming school year

 
Along with the getting drunk part, I also ingested more caffeine and more sugar than I should have allowed myself to do. I felt stressed out this whole month. My sister-in-law was hospitalised with a pulmonary embolism (she’s now home and managing it with medication), and the aftermath of my drunkening had me seriously in the doghouse with my husband, and had me feeling very depressed for a whole week. Oh, and both of these things happened the same exact week. Being on the U.S.S. Hornet was draining, because it required heightened psychic sense (we were ghost hunting), and there was some national news that triggered me emotionally (also in the same week as my sister-in-law’s hospitalisation). The week of August 14 – 20 was a really bad week.

Despite the emotional roller coaster, I experienced SIXTEEN, count ’em 16 pain-free days in a row! Sixteen consecutive pain-free days!

WOW! I definitely have a trend showing itself five months after surgery!
From May to June’s cycle, I had 20 consecutive pain-free days.
From June to July’s cycle, I had 17 consecutive pain-free days.
From July to August’s cycle, I’ve had 16 consecutive pain-free days.

This is AWESOME.

What’s even better is that no matter what I’ve done to myself diet-wise, the number of pain-free days has barely wavered. Not that I’m gonna go on a booze, caffeine and sugar binge from here on out, mind you. That shit still affects my mood something fierce.

I will say that this month’s PMS has been HELLISH. Perhaps that is tied to the poor diet. I’m angsty, depressed, angry, weepy, and desirous to claw myself out of my own skin. I feel like a three-year-old who can’t tell you what the trouble is and who resorts to screaming and kicking everything in site.

The libido thing is about the same as it is for many women with endometriosis – I enjoyed three intimate days this entire month. There were three in July, two in June, one in May, two in April, two in March, FOUR in February, and three in January. None of that has changed much since surgery, because due to endometriosis, I’m also diagnosed with dyspareunia, which happens with deep penetration. The cramps can often last for days, and the deep cramps not something I want happening between cycles, during my “uptime” or my sacred pain-free time zone. Thankfully, truly thankfully, I have a life partner who understands and respects this, as rough as it can be emotionally for him to have to deal with on his end. My husband is a super hero. We’ve been together for 11 years, and have been married for almost three. :)

I fear today may be my last day of work before I’m stuck at home in pain again for a day or three. I’m hoping I won’t miss work at all this week. On Monday, I required 600mg of Ibuprofen to get through the workday. On Tuesday, I required 1,000mg of Ibuprofen. Both days, I woke up feeling like a Mack truck ran over me. My muscles have been tired, my joints have been aching. I have increased my calcium/magnesium intake, and I’m trying to add more green vegetables to my diet for iron. I should be taking my iron supplement – I’ll do that at lunch today.
So far today – Wednesday – I have not needed to take ibuprofen. I’m heading off to work right now. Wish me luck!

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

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

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

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

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

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

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

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

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

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

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

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

ADHERE!

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

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

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

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

My current treatment plan:

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

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

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

Today I started one day early. I woke with mild, annoying pelvic cramps, but they faded by late morning.

I was fine til just after 1pm when I was startled to find bright red blood during a trip to the bathroom. Soon after that, mild cramping began again. I took 600mg Ibuprofen to stop the cramps from getting worse, and it worked! Wheee!

Today I was able to accomplish the following:

• 4 loads of blankets – washed and dried
• Dishwasher was run
• Wooden bed desk was washed again (cat peed on it awhile back and I’ve been washing the sucker repeatedly with Nature’s Miracle, Seventh Generation Wipes, Anti-Icky-Poo®, and more wipes – I think I am finally satisfied that it is no longer contaminated. Talk about OCD and germ/filth phobia!)
• More Montessori homework accomplished
• Bathtub scrubbed with Borax and hot water
• Cat puke scrubbed from runner by front door
• Cat litter exchanged (I accidentally bought the scented version and suffered the chemically sensitive consequences)
• Back of photo album soaked in Anti-Icky-Poo® – this didn’t work out so well – the back of the album held up perfectly, but the stench and filmy residue are still there. There are two or three photo albums that the cat peed on in recent months. They’ll just have to be replaced.
• Blankets folded and put away
• Bed stripped and new sheets/blankets/pillow cases applied

That is a whole HELL of A LOT of stuff to be physically fit and able to do on my first day of my period, let me tell you!

Sometimes it just goes like that. I’ve not been doing anything differently – I still ate a lot of chocolate right before my period. I still ate lots of cow and goat cheese. I still drank lots of caffeinated coffee and tea with lots of sugar.

I did see my acupuncturist on June 24th, and on June 26th, I got a massage from my friend who is now a licensed masseuse. Even so, given my decades-long history with this illness, I don’t think acupuncture and massage are what allowed my cramps to be minimal today. Sorry gals. I truly think my illness behaves as it wants to behave, when it wants to.

On June 20, I noticed that I’d become lax in taking my calcium/magnesium pills, as well as my evening primrose oil pills. I noted the constant back and joint pain I was in, and said I’d resume my supplements. Within 48 hours of writing that, I went out and bought a new bottle of calcium/magnesium, and began taking it twice a day with a Vitamin D3 pill for better absorption, and I resumed my evening primrose oil pills along with the Vitamin C and zinc and other supplements I take.
The back and joint pain eased up immediately and profoundly!

As I got closer to menstruation, my mid back began tightening up, as it always does. This puts strain on the lower back, and then it becomes hard to stand up straight, or even sit up straight, for that matter. My massage was great on Saturday and helped loosen the back, but I messed it all up later that night by wearing a corset too tight, and my back went into spasm.
For the last three days since then, my back has alternated between being fine and wanting to lock up from the mid point down, because it’s going into protective mode like it always does every month before I menstruate.

So today the back pain was moderate. I took 600mg of Ibuprofen tonight when I got out of the shower. As I lay there on the newly made bed to cool down after my hot shower, my mid back began to spasm again. It was more of a twitch but a thickening of the muscles, definitely. Not the charlie horse type back pain I was in on Saturday by a long shot, but I could tell my back is definitely out of sorts.
(fun fact about me: hot showers, hot baths, hot tubs, hot pools – it has to be hot – it’s the best thing next to sex).

Oh – today is the first day I was able to get through the day without the following:

• Coffee
• Caffeinated tea
• Raw sugar to sweeten anything
• Cow or goat cheese

It’s not to say I didn’t suffer – it was a difficult day! I did eat two protein bars which contain chocolate liquor (but no sugar!), but I did not directly eat chocolate candies today. The two bars I can stomach the best are Brownie Crunch and White Chocolate Chip, though they do leave a bad aftertaste – probably because of the Malitol. I eat these things not to lose weight but because they’re the only gluten free protein bars that do anything to keep my energy up and stave off hunger for a bit when I’m at work and my only moment to catch a break is during the kids’ lunch hour. I used to eat Belgian Chocolate Organic Food Bars like nobody’s business, but the stores near me stopped selling the chocolate ones. Nowadays I eat almost as many BumbleBars as I do ThinkThin bars, but the BumbleBars don’t keep my energy up or my appetite at bay long enough.

Before I forget, I have been having a lot of strange dreams, lately. I don’t know if it’s the full moon (it was full on Saturday, June 26) or what, but the dreams are crazy.
…or not… I just looked up my dream about having lice the size of crickets in my hair, and this was the translation I got:

To see lice in your dream, signifies frustrations, distress and feelings of guilt. You may also be feeling emotionally or physically unclean. Alternatively, the lice my represent a person, situation, or relationship that you want to distance yourself from. You may be feeling used or taken advantage of.” DreamMoods.com

Fascinating! I was feeling used and taken advantage of!

Alas, I couldn’t get any insight into my dream about my dad’s right leg having to be amputated – the dream site only discusses the meaning behind the dreamer having her own limbs amputated.

*shiver* at least the lice thing is sussed out. When I woke this morning, I decided I would not continue to be angry with the Chi Nei Tsang lady, and I would not continue to feel taken advantage of by her. I put it right by taking matters into my own hands and ordering the supplements I need. I will do my own cleanses from now on if I deem those detox supplements to be of benefit again. This will only be my second time doing the cleanse, so we’ll see how it goes.

Alrighty, I’ve taken a total of 1,200mg Ibuprofen today and the pelvic cramps were quite minimal (I’d say a 2-3 on the pain scale. Right now is the first time all day that the nerves have begun to start their little dance down my inner thighs, so I’m just gonna high-tail it into bed and hope I wake to another minimal pain day tomorrow.

I really really wanna do a Steph’s Mythical Underworld photo shoot to illustrate from my mind’s eye my descent into hell each month. Even though I’m in minimal pain, I’m still at the gates to the Underworld. It’s not pessimism by any means. I know what I mean and that’s all that matters. ;)

Ooo – another thing before I forget. A few things…

Tonight I tried pesto instead of cream sauce and the result is that I have indigestion and I’m burping a lot. What’s in the pesto? It’s Trader Joe’s brand and it contains basil, sunflower oil, potatoes, olive oil, grana padano cheese (pasteurized cow’s milk, salt, rennet (animal), egg proteins), pecorino romano cheese (pasteurized sheep’s milk, salt, rennet (animal)), cashews, salt, pine nuts, lactic acid, garlic.

Well dammit, it could be the potatoes or the egg proteins or the cow’s milk or the sheep’s milk. Since I have a renewed war against me courtesy nightshades, which I thought I outgrew in childhood, I’m going to blame the potatoes and the egg proteins for the indigestion and burping. How ’bout that. Glad I only got the 6oz jar.

Another item to mention – I’m trying to consciously correct my gait, my posturing while standing and sitting, and how I move my body when bending forward for anything. I’m trying to stabilise my core region in the hopes of easing up some of the pelvic pain I suffer. I really should be back in the gym – I haven’t gone in well over a month now.

I thought there was one more thing but it’s gone. Good night!

First the catchup stuff:

June 20 was the worst pain day for shoulder, back and neck strain, then it became at least bearable for the rest of the week in through today.

June 22 – I was at Costco around 8pm when suddenly I was doubled over with right side stabbing ovarian pain. The intermittent stabbing lasted for over an hour and made me double over several times. It took the breath away from me. I did not medicate though. Also, I had low back pain all day – I felt very stiff.

I’d like to mention that I’ve also been having diarrhea after meals, lately. Even and especially with safe foods. It could be stress from everything. I dunno. I just need to note it, because normally I’m a very constipated person. I wish I could remember when it started, but it’s been going on for at least two weeks – usually one or two episodes a day.

Within the past five days, I have resumed taking two to four calcium/magnesium pills per day. This of course is not helping with the diarrhea.

June 23 – Yesterday – I was still experiencing left and right side ovarian stabby pain. It was still intermittent. My lower back was hurting a lot. It was hard to straighten after sitting or bending. Still having diarrhea. Also, I had my followup appointment with my new GYN (Giudice), and we went over the MRI results.

The appointment was about a half hour and was rushed because my GYN needed to be on a plane to some conference. I was originally scheduled to come in at 11am, then the day before, it was moved to 10am, then to 9am.

She quickly went over the MRI results with me and hit the big point – adenomyosis. She told me that based on the image, there is not any thickening of the inner uterine walls, so that rules out adenomyosis. YAY!

She told me I still have the chocolate cyst on my ovary, and said it is indeed an endometrioma, but she totally acted nonchalant about it, and said we’d continue to just watch it. She said she has no intention of going in and doing surgery just to remove that chocolate cyst, and she doesn’t see why I need another endometriosis surgery, either. She urged me to keep trying physical therapy and alternative health remedies and pain management instead of going the other three routes: hormone therapy, seizure medication, surgery. She referred me to the Osher Center for Integrative Medicine, across the street from her UCSF campus. I went and checked it out – they have a bunch of services I can get where I live and not stress the hell out by being stuck in traffic across the Bay Bridge, and then navigating the crazed lunatic streets of San Francisco. Thanks, I’ll pass on your lovely center.

I got home yesterday afternoon and before scanning my MRI results into the computer, I read over the report.

This is where the emotional wall collapsed.

The GYN didn’t think it necessary to mention that the chocolate cyst on my ovary GREW by .5cm within 36 days. I wasn’t sure how fast or slow endometriomas can grow, so I looked it up and it seems that endometriomas can grow very fast within a short period of time. In that regard, I think .5cm might be considered slow growth.

Fast or slow – it doesn’t matter – the sucker is growing.

I’m not used to dealing with an endometrioma. I have experience with ovarian cysts. This is new territory for me. It’s scary.

The GYN also didn’t find it necessary to tell me that while I don’t have adenomyosis, I DO have several small cysts in the liver, one small cyst in the right kidney, and several cysts covering my cervix.

WELL. I had a brush with high liver enzymes in 2008, and all the Tylenol 3 I consume takes a toll on my liver and kidneys, doesn’t it? I have been experiencing nausea and left flank pain well above the ovary ongoing throughout this month. I have been having diarrhea. I have had ongoing elevated temperature, reaching as high as 99.9°F.
All this time I attributed it to the ovarian cyst, but could it be from the liver cysts?

On top of all that, I have a recent history of cervicitis, and well, my cervix is everted, so why not add some cysts?

I looked it up and found that cysts in the liver and kidneys are not caused by Tylenol or medication, but in fact are often congenital and coincide with autoimmune disease.

Guess who has autoimmune disease?

I called the GYN office back and asked for clarification of the MRI report. Then I called up the Qigong practitioner I thought I wasn’t going to see anymore, and left a message for her. Then I called my local doctor’s office and got an appointment for today.

The GYN office called back after hours, bless their hearts, and the GYN’s assistant told me that the cysts are all nothing to worry about. She told me to follow up with my primary care doctor if I wanted to, though.

Today I did just that, and the primary doctor (Fredian) called up UCSF and spoke with a hepatologist in radiology, who looked at my MRI report, and told my doctor that the cysts in the liver and kidney are nothing to worry about, that they’re so small they won’t cause trouble or show up on a regular ultrasound.

However, Dr. Fredian wanted me to stop referring to the thing on my ovary as an ovarian cyst. She told me it’s much more than that – it has some solidity to it. Despite the common name ‘chocolate cyst’, this is actually a growing MASS on my ovary, and it should be closely watched. She told me the difference between this mass and a ‘regular’ ovarian cyst is that this cannot reabsorb.

This of course did not help my emotional state to make the conscious switch from the idea of a benign cyst to a nefarious growth.

The doctor concluded our appointment, congratulated me on not having adenomyosis, and sent me on my way.

My Qigong practitioner called me back today, and I went over the MRI report with her. She got quiet and pondered her words. She sounded cautious. She said I need to do a cleanse ASAP. She encouraged me to keep seeing the acupuncturist, but to try to go every week. She sounded urgent in addressing my health. This added to my anxiety. I got all apologetic and confessional by saying I hadn’t been eating right for a long time. Her voice still soft, she told me something like, “it’s much more than diet, you can’t feel bad about that.” Again my anxiety. Ugh.

But I came home and resumed my homework – I took another teacher training class last week and I’m still trying to finish the binder from that class this week. Yet another class begins this coming Monday.

Later this evening, I had my first acupuncture visit since about May 6th, and I showed my acupuncturist the MRI report, too. I told her of my fears of the liver and kidney cysts, despite what my GYN and primary care doctor are saying. I have all these symptoms – what if it’s connected?
My acupuncturist says it all IS connected, and that she will continue working on me to keep the blood moving (or as I choose to describe it, to keep flushing the lymphatic system). She’d like to see me every 2 weeks if I can swing it, but says every week is not necessary.
She also seemed to get very quiet after reading my MRI report, and also seemed very careful in choosing her words. I’m just a ball of anxiety over this.
The acupuncturist left the room and I closed my eyes to rest while the needles did their thing. The first visual image I got upon closing my eyes was a rectangular hole in the ground, decorated on the outside edges with a beautiful rectangular autumn leaf arrangement. My eyes welled with tears and I threw open my eyes and stared at the ceiling to try to get ahold of myself.

Funerals! Are you serious? Get a grip, woman!!!

The tears were perhaps a release of pent up emotions, and the acupuncture opening channels.
I’d spent the day matter of fact, blunt, even aggressive at times in demeanor. By early afternoon, I likened myself to Starbuck from the 2004 remake of Battlestar Galactica.

But by the time I was in acupuncture session, I was ready to sob.

I got home and tried to resume my homework, but the tears came. I sat there working at the desk as the tears just streamed down my face. I couldn’t stop them, and I refused to allow myself the time to just cry like a baby, because my husband was home, and I hate crying in front of anyone, even him.

I made myself a horrible vodka drink and sipped at it. It was so bitter, it helped stop the crying, heh.

I told you I wouldn’t be handling things well if the MRI report contained anything other than my usual endo issues.

Yesterday and today I’ve been experiencing mild uterine and vaginal cramping. I’ve been “checking” a lot.
I came home from work around 2:30pm with a 99.9°F fever, and it hovered around 99.7 for the rest of the day. I was not able to get a last minute appointment with my acupuncturist.

Despite the low grade fever and cramps, and being a bit sunburned from lunchtime recess at work (I’d forgotten my hat and sunblock again), I still got a burst of energy yesterday evening, as my body went into what I call XXTREME NESTING mode.

My body does this every month right before I bleed. Sometimes I have the energy to act upon the XXTREME NESTING pull, and sometimes I just spin my brain meats and go stir crazy because I’m in too much pain to act on said pull.

Last night I took out recyclables, composting, did a load of laundry, loaded up and ran the dishwasher, got some more grocery shopping done to prepare for being homebound, mailed some bills, and scrubbed the bathtub twice. To my horror, neither the Borax nor the straight vinegar could fully clean the tub. We’d been using novelty Halloween soaps given to us for our wedding, and I’m convinced the soaps contained permanent black dye and wax. Ugh! On top of that, my husband has dyed his hair black twice in the past month and a half, and has not bothered to rinse the residue after his showers. So the tub is to me a horror story. But then, it’s nowhere near my mother’s bathtub. I went to visit my mother a few weeks ago in Michigan – it was my first trip home in six years. She has really let her house go down hill. It made me figuratively and literally sick to be in that house for more than a few minutes. My allergies exploded after 8 minutes in the place.

*shudder*

ANYWAY, after my attempts at cleaning the tub, I was sickened by the vinegar smell and just rinsed the damned tub and called it a night. I took 600mg Advil and went to bed.

I had even more crazy dreams. The dreams this morning entailed not being able to find a cab ride out of Detroit after a night at Cityclub, because the cabbies were taking furlough days on Sundays. We ended up walking all over the city around 4am trying to find a cab before we found out about the furlough issue. Then we ended up at our friend Bronica and Monkey’s place (but in real life, they live in Oakland, CA, not Detroit, MI. I guess it’s similar enough though). Then we took off for food at daylight, and I stopped at a street vendor who was selling broccoli cheese soup in a bread bowl. I convinced her to put the soup in a to-go bowl and put that bowl into the bread bowl so I could enjoy the soup without the gluten, and my husband could share the soup and also eat the glutenous bread. I was also trying to reach a friend or a cousin on my cell phone. I think I was trying to reach my childhood friend Rain, and I told her we were near the intersection of Aricka and Martin Luther King Jr Boulevard.
There is no Aricka street – Aricka is my cousin’s daughter.

Why all these strange dreams?

This morning, I’m registering at 99.4°F temp, and I’m uncomfortably nauseous after one bowl of cereal.

The nausea really pisses me off and usually means I still have an ovarian cyst going on. I’m convinced I’m either going to puke or start bleeding or both before I can get out the door to work. Part of me wants to call in sick, but I’ve already left work early twice this week, and it’s only been a four day work week.

We’ll see what happens next…

I’m due on Sunday, June 6 but this morning the cramps are setting in, along with low grade nausea and the hormonal whack which causes hypoglycemia-like symptoms.

The night before last, I took a Tylenol 3 before bed.

Last night, I took 600mg Advil before bed.

For the last two nights, I’ve had really effing strange dreams. Last night’s dream involved stuff coming out of my vagina the consistency of white poster paint, and getting all over my clothes. NASTY! WTF!!!

I’ve been seriously depressed since returning home from Michigan – still unable to fully process my experiences there.

And I have forgotten to make another appointment with my acupuncturist. I wonder if she still has an opening for tonight.

We’ll see if I can even make it in to work today, and for how long.