I Will Not Suffer In Silence

Today is heavy and painful. After 7am, I woke with severe low back pain that left me hunched over further than I normally am when I get out of bed or a chair in pain. I could have scraped my fingertips on the ground, it seemed I was bent over so far.

I ate some cereal and almond milk, and consumed a whole Tylenol 3 pill first thing this morning. I went back to bed with a heating pad on my lower back, and alternated between the cat/dog and the cat/cow yoga poses on the floor and on the bed. I whimpered a lot.

Then I went back to the kitchen and reheated my corn and rice heating pads. I sat down in the kitchen chair while waiting, and my pain dissipated. So I’ve been in this same chair ever since, reheating the pads as necessary. That’s about 4 hours now I’ve been in this chair, but the pain is manageable. The moment I get up and walk to the bathroom, the pain starts again. So here’s where I’ll stay, like I should have done yesterday.

I’d also like to point out that my pain was managed well by the Tylenol 3 for the past four hours, and I have been coherent and rational, albeit moderately sleepy.

It just sucks that a synthetic pain relief pill which eats my kidneys and liver works better for pain management than a plant growing in nature, which will not kill my kidneys and liver but will put me in a vegetative state for 8 or more hours.

I’ve tried Sativa. I’ve tried Kush. I’ve tried Indica. Now I’ve tried CBD. All make me incredibly high, even on low dose, with minimal pain relief.
Actually, the Indica, Sativa and Kush INCREASED my pain.

Bleh.

I am currently on round two of medication for the day: 400mg Ibuprofen and half a Tylenol 3.

Gonna try to get some homework done.

6:48pm edit:
Around 4pm I took my third round of medication - a full Tylenol 3. So it was about 8am, 12pm, 4pm.
At 6:48pm it became suddenly hard to breathe. Maybe didn’t drink enough water today. Chugging water now and going to lay down. I am happy to have gotten about six hours of homework done!

8:07pm edit:
I do not understand why, for two days in a row, I’ve become full on high as a kite on medication taken hours earlier. Today it was nearly three hours after I had taken my last dose of Tylenol 3, and suddenly I was high as a kite and it was hard to breathe. I had the codeine suffocation like I’d taken too much of it. When I went to lay down, I began getting piercing pain in the abdominal wall, just to the left of my belly button.
And then the coughing fit started. I spent 20-25 minutes coughing violently while in bed. I coughed til my throat bled. Every breath in itched. This could have been a dust allergy interacting with the upper respiratory tract infection, I dunno. The news says there’s a Pertussis outbreak. I am supposedly vaccinated against it, but my immune system is non-existent so who knows.

My coughing fit did not calm down until I applied eucalyptus chest rub to my chest and inhaled it off of a cotton ball. I am so glad I spent the cash on that stuff at the hippie store.

Two last things: #1 the weather has been mild and sunny for the past two days and I have not seen any of it due to the pain and medication haze.
#2 I forgot to mention that I had called my GYN about the greyish clot I found two days ago, and I heard back from the doctor’s office yesterday, just as I was fighting the last bits of coherency as the cannabidiol took me down.
The person I spoke with said it’s entirely possible that my endometrioma ruptured and that could be what I am seeing what with all the grey and dark brown blood and debris. I expressed worry over what my innards must be covered in, if this is diseased material that ruptured inside of me. She told me there’s no way of knowing what, if any damage has been done. She wrote off my worry. Stupid human.

This is where it gets interesting - I Wait For It and find out just how bad the pain gets as new growths and adhesions start to take root…if in fact the endometrioma did rupture.

Go me.

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 had it in my head that I have been experiencing nausea for the past month, even when I am not on my menstrual cycle, and that this must somehow be a new development.

Then I got word of the MRI results, saying I have cysts in my liver, kidney, cervix, and I have an endometrioma on my left ovary. I thought for sure the nausea had to be tied to one or more of those, but fixated on the endometrioma, because I recalled being pretty nauseated in the past when dealing with ‘regular’ ovarian cysts.

So yesterday I’d had enough of the nausea - it got so debilitating that I could not read my homework anymore. Friends on facebook asked if I’d contacted a doctor about this. Uh..no, I haven’t, heh! So I did.

My local doctor’s office - the on-call doctor of the day - called me back after 9pm last night, and I asked him if he could prescribe Cesamet, which I heard about through a Canadian endometriosis buddy a couple of years ago.
He said no, his office doesn’t touch the stuff. He went on to say he did not think my nausea is being caused by the endometrioma or the liver or kidney cysts. He said he has never heard of nausea being brought on by an ovarian cyst, and says he’s been practicing medicine for many years. He was condescending and talked down to me and was authoritative, and suggested something else is going on that I should get checked out for. He said I should come in for a checkup. In the meantime, he suggested I try taking peppermint tea or ginger tea for the nausea. I told him I’ve already done that to no avail. He then sent in a prescription for Phenergan. I looked it up and decided the side effects were once again worse than the problem, and so I will not chance taking the stuff. Remember that I am the person who hallucinates on Tagamet and could only handle 6-8mg of any SSRI medication at a time without severe side effects, and over the long term, I am *still* trying to recover from the two years I spent on SSRIs.

ANYWAY, so Phenergan is out.

This morning, one of my gynecologist’s minions assistants called me back, and I talked to him about the nausea. He was MUCH more diplomatic than the local asshat doctor. He said that their office does not have experience with prescribing Cesamet, and so he unfortunately could not help me with that. He also said it seemed unusual that I should be experiencing nausea with an ovarian cyst. He told me that he felt the endometrioma was way too small to be causing problems for me at this stage. He also doubted that the liver and kidney cysts could be stirring up nausea, but he suggested I speak with a gastroenterologist if I am still concerned. I thanked him for his time and we hung up.

Gastroenterology, eh? Well I’ve already ordered the liver and kidney detox supplements, and they’re on their way. So I’ll try that first, before hiring on yet another specialist.

Today, just to say I have covered all my bases, I contacted one of the two Cannabis dispensaries I am registered with under Prop 215, but they would not speak to me by phone, and said I’d have to visit in person or send an email. So I emailed both dispensaries to ask if they carry or can get Cesamet. No one is available to take me to the dispensaries today, and I’m in no shape to go out on my own.

I do not have confidence that the dispensaries can get Cesamet.

This leaves me wondering about the nausea. So I searched my own blog, and was frustrated to find that I had posted about this 98 times throughout the life of my journal! I went back and made a category for this one keyword, to make it easier for me to search next time. Ugh.

So what does this mean?

This means that the nausea is nothing to be alarmed by, whether it’s on cycle or off. I usually had this only on cycle, but apparently having nausea between cycles - it’s just part of living with endometriosis.

Go me.

I am truly frustrated and feeling at my wits’ end by having to continue residing in this meatsack. I feel I am reaching the bottom of the emotional pit this month. I hope that means that after today, the pain and bleeding will ease up, and I will be able to emerge once again from the Underworld.

Each month that I must pass through the Underworld, I grow weary of ever making it back out alive again. I fear that one of these days, I’m just going to give up and make it my permanent home out of sheer exhaustion with having to battle this illness.

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!).

George is two days late. He was due Sunday. Because I always count the due date as Day 1, I’m going to say he’s actually three days late.

Last month, I was diagnosed with a .9cm chocolate cyst (endometrioma) on the right ovary.

A month before that, I was sure I’d had an ovarian cyst which ruptured.

Either that cyst did not rupture and continued to grow from March to April, and then from April to May, or I’ve developed a new ovarian cyst since April.

In either case, my reality is that I do have an ovarian cyst, which I can tell you about with my own authority and experience, and I can back it up with the ultrasound I had on April 21.

Before March 2010, the last ovarian cyst that I really felt and had complications with was in November/December, 2008. I suspected an ovarian cyst in October 2009, but I didn’t follow up on it in my journal, so I dunno if I had a cyst or not.

So my own authority and experience this time around matches up with my symptoms in November/December 2008 as well as my symptoms in March, 2010: during the current cycle, I was supposed to begin menstruating on Sunday, May 9, but george is nowhere to be seen. Instead, I began experiencing stabby right side ovarian pain on April 30, which has lasted to the present day.

Going back through my calender, I noted:

Monday, May 3 - left side ovarian pain started.

Tuesday, May 4, - sharp low uterine, upper vaginal pain - intermittent. Heavy fatigue throughout the day. Full uterine and ovarian (both sides) pain at a dull constant level throughout the day, rising to 4 at times on the pain scale. Took 400mg Ibuprofen at 8pm, took 400mg more at 9:30pm.

Wednesday, May 5 - Fatigue, achey, intermittent uterine pain

Thursday, May 6 - sharp pelvic pain - stabbing left ovarian, sharp intermittent low uterine pain. Uterine pain became constant by 2pm. Large hip circles earlier that morning to manage the pain were not successful.

Friday, May 7 - Constant low uterine cramps. Highly emotional all day, turning to high irritability by nightfall. Had food reaction - I suspect either the ’smoked’ cheddar/mozz cheese or the marinara sauce on my gluten-free pizza.

Saturday, May 8 - Constant low grade uterine and ovarian pain. On ibu all day - consumed over 2,000mg. Still quite irritable.

Sunday, May 9 - George is a no-show. Moderate low back pain, on ibuprofen again but only took 800mg total and toughed out the pain. intermittent continued uterine and ovarian cramps.

Monday, May 10 - I didn’t record anything that day because I was out of the house running lots of errands after work til nearly bedtime to prepare for upcoming Michigan trip.

Tuesday (today) May 11 - Pinching/stabbing right side ovarian pain. Took 600mg ibu first thing in the morning, 600mg ibu around 2pm. Heavy fatigue all day. Mild to moderate intermittent uterine and right side only ovarian pain all day.

(side note: I’ve tried my gluten-free pizzas several times since May 7 and the only constant is the tomato sauce - all other ingredients have been changed up - so I bet my tomato allergy has caught up with me again after being dormant for years…just like my citrus allergy caught up with me again last October).

(another side note: I’ve only been to the gym twice this month, and I bicycled five times this month, with the last time being a week ago - May 4)

The ovarian pain, the low back pain, the fatigue - all of that is part of my usual pre-menstrual pain, but I also had vaginal pain and really tender/painful breasts and nipples this cycle, and THAT for me smacks of ovarian cyst.
Given that I knew I had a cyst in March, and a cyst was found via ultrasound in April, it’s pretty much confirmed for me that the reason why my period is late is that the cyst is still growing and causing problems.
I think the longest my period has been late during an ovarian cyst flare has been three days. So george should therefore be here by tonight or tomorrow.

Knowing that helps me not to freak out so much, cuz by last night I was freaking out in the most irrational ways:

• OMG what did my acupuncturist do to me last Thursday - she did so good that not only do I not have massive pain, I am not bleeding at all!

• OMG I’M PREGNANT!
• OMG MY WEEKEND IN MICHIGAN IS RUINED - I’LL BE BLEEDING AND IN HORRIBLE PAIN ON THE PLANE AND IN MICHIGAN DURING THE PLANNED PARTIES AND CLUB NIGHTS!
• OMG IS THIS WHAT ADENOMYOSIS DOES?
• OMG I HAVE CANCER!
• OMG I HAVE NO IDEA WHAT IS WRONG WITH ME!

 
I’m much calmer today after reading up on ovarian cysts again, and going back through my journal entries on my previous cysts. I’m falling more into acceptance with what is happening, and adopting the ‘This too shall pass’ mentality.
I’m still pissed off that my weekend plans are likely ruined, but the truth is that these things can easily be rescheduled before I fly back to California.

I’ve never flown on an airplane during a my period, and my period is ALWAYS a nightmare of pain, so this should be interesting. :(

My last post was Thursday, January 28th, and I began spotting on Friday, January 29th, so I guess I can’t even go by the mucous colouring. Last month it was about 48 hours from the time the mucous turned until menses arrived. This month, it was 16 hours. Well, I dunno though. I was spotting pretty lightly all day - is that day one of menses? Or is Saturday, when the spotting turned to flow the first day of menses?

Traditionally for me, I have held that my first day is when the spotting gets heavier and turns to actual flow. That would make Saturday the first day - which is still three days earlier than my calendar predicted, but right on for what my gut feeling had predicted as early as last Tuesday.

Friday after lunch, around 2pm, I took 2 Harmonizing The Moon Chinese herbal pills, and by 3pm I was a nervous chatterbox, ready to have a manic fit. I had a doctor appointment at 4:30pm and when my pulse was taken it was 88. For me, that is high.

By Friday night I was sobbing, and again Saturday morning I was a crying basketcase because it was 60°F and the sun was out…and I couldn’t be out in it to enjoy it. Again. I told my husband I would count how many warm sunny days I miss in one year to further let people know how this illness impacts my life.

This manic-depressive stuff is very unusual for me. The last time I acted this way was when I was on Yasmin in February 2007.

Saturday morning, the pain was bad enough that I was doing the pressure points and breathing exercises. Around 2:30pm, I took 600mg Advil, half a Tylenol 3, and two Harmonizing pills. No relief half an hour later, and then finally the Tylenol 3 kicked in, but the pain didn’t seem to want to go away. I decided not to take any more Tylenol 3, and instead asked if we could go to a medical marijuana dispensary. My husband was fine with this, so he drove me there.

This is the first time I’ve ever been to a dispensary. I had read what it would be like to enter one, and so I was not surprised by the sight when we drove up to the heavily barbed wire compound in Berkeley. Nor was I surprised about having to show my ID no less than 3 times to enter the front door and each room of the dispensary. I filled out paperwork, added my husband as my caregiver, took a tour, and asked a ton of questions about the various edibles. We came away with some butter and a single serving packet of peppermint mocha mix.

I didn’t want to try out my new groceries right away, since i was still stoned on Tylenol 3, and didn’t know if I’d have any adverse reactions if I also ate something with medical marijuana in it. I’m so extraordinarily sensitive to even over the counter medications, I didn’t want to take any chances. I mean, I’m the one who hallucinates on Tagamet for chrissakes. Check it out, hallucination is listed under rare side effects for that product.
Lucky me. :/

At 7:30pm, I had minimal pain and I took 2 more Harmonizing herbal pills. The pain returned by 8:30pm and was roughly a 6 on the pain scale. I was at a friend’s house when the pain hit, and I stood up and paced for a few minutes, then spent the rest of the time rocking to and fro, trying to do subtle hip circles to work out the pain. It got up to a 7 and fortunately, around 11pm, people began to leave, so I had an out as well. Honestly I didn’t want to leave earlier cuz I was enjoying being around friends. But when everyone suddenly got up to go, I went with.

When I got home, I made a gluten-free waffle and spread some medical butter on it. I believe it was about half an hour before I felt like I could say I was feeling the effects. I didn’t use much butter at all - I didn’t want to chance taking in too much on the first try.

The awesome thing is that my cramps disappeared. Gone.
Not “I was dissociated from the pain” - the cramps effing went away. How awesome is that?
I smiled at my husband and said in a stoned voice, “If I’ve been suffering all these years, and all it took was for me to ingest marijuana by way of food to stop the pain, I’m gonna be real mad.”

Sadly, an hour and a half later, the cramps returned. I’d say I’m about a 3.5 on the pain scale.
Also, about 2 hours after initial ingestion, the high continues to ebb and flow, feeling much stronger at times, making me dizzy.
So the thing is, I need to of course not be at work while on the butter, and I need to keep using as little an amount as I did tonight (I’d say it was a teaspoon or less that I used on the waffle), and I’d need to do this every hour and a half to couple of hours to remain pain-free…but I can’t because the high lasts much longer than the pain relief. I’d get too high and therefore sick on the medication. This presents a problem. Something to think about now is all…

Lastly, my fingers have been splitting open and bleeding, again. I started remembering the 2 Chinese herbal pills twice a day in earnest in the past week. I told my acupuncturist to ask her provider if there is any chance that gluten or yeast could be in the ingredients for both types of pills she has prescribed me.
I am wary of the Chinese herbal pills, and I may decide to stop taking it altogether.

Phew. Let’s hope this post makes sense when I wake up. It’s the middle of the night and I’m still stoned silly.
Current pain is a 2 on the scale.
Sweet.

I am so tired and weak. I went to bed after 2am and got up at 8:30am. That’s not bad - I usually sleep about 6.5 - 7 hours per night through the week anyway. I’ve been feeling very sore all day - my hips, thighs, knees and ankles hurt. But I did not walk intensely or exercise a lot yesterday. Maybe I’m so sore *because* I’ve not been running around all day since Friday at work?

More likely it is george. He always makes me feel like I’ve been run over by a mack truck. Then again, I’ve not been eating so well, lately. That will do it, too. I’m still waiting for george to show up. My personal computer calendar says he’s due today. The laptop calendar says he was due yesterday. Who knows anymore. My cycle has been off since February.

I have done nothing physically active all day today. Sunday is usually my day to get all the housework and laundry done before the work week begins again. Today there was so much going on and I totally cleared my schedule.

• There was afternoon tea in the backyard, courtesy the neighbor upstairs.
• There was a sheet rock party at a friend’s house - a work party to help him get his new house in order so he and his wife and infant can move in.
• Another neighbor in the back of the house needed help getting her digital converter box all set up because as of last Thursday, broadcast television as we’ve always known it in the U.S. ceased to be. I called the FCC and we got a guy to come out and wire everything up for my neighbor, because I didn’t know how. I have not had regular TV or cable TV for probably six years now, by choice. We just have DVD and VHS hookup when we want it. We did not purchase the digital converter for our home.
• A neighbor two doors down wanted me to babysit her toddler.
• A neighbor almost three blocks down wanted me to babysit her toddler.

I cleared all of it off the schedule because of george. I even asked my husband to go to the grocery for me because I couldn’t even manage that.

Regarding my diet, I’ve not eaten well for over a month. I spent 18 days in the UK and my fingers were cracked open and bleeding from all the gluten and yeast that kept creeping into my diet. Some of it was accidental, some of it was on purpose. I drank whisky because it’s friggin Scotland for chrissakes. You cannot deny me that experience! I had bandaids on no less than four fingers and my fingers were constantly in pain. I put lotion on several times a day to no avail because well, it’s a dermatitis allergic reaction after all.
I also found out that “glucose syrup” is corn syrup and wheat, because the UK has to explain what it is on all their labeling. I had been eating fudge because the UK apparently is known for its fudge. And it seems all the damned fudge has the glucose syrup in it. I didn’t check the label until I was back home in the states. Stupid me!

I know this month’s cycle is going to be crazy, if not downright brutal, because of the way I’ve eaten and all the alcohol I’ve consumed socially over the past month.

So yeah, I’m starting to record what I eat again, and I’m going to have to do more diet elimination again soon to find out why I’m still getting allergic reactions now that I’m back home eating my ‘usual’ diet again.

The thing that pisses me off the most is that despite all the allergy tests I’ve had, despite all the research related to diet and endometriosis, despite my own findings for my body with regards to food sensitivities - none of it has been proven as a direct link to endometriosis pain. I get so sick of the anxiety I suffer over eating something and then wondering if I’ll have immediate pain while menstruating or if my next cycle will be affected by something I ate days or weeks ago that somehow may still be wreaking havoc on my system. None of it has been scientifically proven for my body. It’s all speculation. I need some solid scientific findings for MY body.

And y’know, with how off kilter my diet was, I actually LOST weight on our honeymoon, because of all the hiking we did. And since I’ve been back to work, I bicycle to and from work every day. While at work, I run around with children all day, literally. And I kneel and bend and stand. I’m constantly going. With all that exercise, plus all the constant walking and hiking and climbing we did in the UK for 18 days, you’d think building up muscles and toning myself would have a beneficial effect on my system.
But no.

Hell, I’d be happy to just know whether or not the endo is growing back again, and where, WITHOUT having to have surgery again. Because if someone can say yes, it’s grown back, then I don’t have to feel like I’m going insane or imagining things.

In the meantime, I can’t focus. I started this journal entry around 3pm and it’s taken all day just to get this far.

I rarely take Tylenol 3 to quiet an anxiety brain but tonight I did. I’ve taken Tylenol 3 about three times in the past week before bed because of severe joint and low back pain as related to endometriosis symptoms. Tonight it’s just doing double duty.

My husband and I were talking about what to eat for dinner, and I said I was craving Pad Thai. Then I thought for a second… didn’t I get major cramps last time I ate Pad Thai with shrimp?

Why yes. Yes I did.
Noted on January 20, 2009 and also noted on September 16, 2007.

I’m super glad that I now have everything documented on one searchable server.

I’ll be avoiding Pad Thai altogether tonight just to be safe, cuz george is due by Monday, and I’ve already had moderate pelvic pain extending down my legs to my knees all day today as it is. Although, I ate forbidden foods this morning, too — scrambled eggs and bacon.

The PMS cravings lead me to hurt myself. Why does the body do that to itself!?

Today I am feeling better.

Saturday morning, I had a revelation - getting pain two weeks before menses is due IS actually normal for me! It’s how it was for me all those years before I had surgery.

I noted it in May, 2006 and in July, 2006, a year before my surgery.

*big sigh*

So I had two good years, if you can call them good. I never experienced complete pain relief, but the surgery did at least some good: I did gain a week and a half of my life back every month for two years.

After five days of being in moderate pelvic pain, culminating with me taking a total of 1,800mg of ibuprofen on Saturday throughout the day, and capping it off with a Tylenol 3 and a heating pad….

Today I woke up in no pain and stayed that way all day.

And get this - last night I ate like complete crap. I ate gluten-free cookies, I ate Cheetos (first time in many months), I ate chocolate pudding… all that you’d think I’d be in screaming pain. But no. I ate this stuff while already being in pain. And then today - no pain. So it doesn’t matter what I do for dietary management. The pain will happen no matter what I do. This doesn’t mean I’m going to embark on a diet of chocolate cookies and cheetos - it just means I won’t be so hard on myself anymore when I don’t stick to a strict diet in some aspects. And of course with the gluten and yeast allergies anyway, I still do have to keep a strict diet.

I’m eight days away from menses. Will I stay pain-free until then? Will I experience debilitating pain on my last week on the job? Today I feel great, tomorrow I have no idea.

On Friday, the on-call GYN said it is normal with endometriosis as bad as mine to get mid-cycle pain that lasts that long, and she was right. I’d forgotten, is all. I used to get it like this before surgery. I had two good years before the shit started growing back again badly.

Time to start researching Dr. Cook, who is local, Dr. Redwine, who’s up in Oregon, and the Center for Endometriosis Care out in Georgia, because I am NOT going to go through just any OB/GYN surgeon ever again.

…annnd my ears just began stinging and feeling hot to the touch, and looking in the mirror I see they are both beet red.
I know from experience that this is a hormonal or immunological thing with me.
I had sushi for dinner with wheat-free soy sauce. However, soy sauce has phytoestrogens and yeast in it. So I’m likely having a reaction. Better my ears than my gut, I always say.
..ugh..now getting a headache and red itchy upper cheeks. :(

On Friday, as a sort of treat to myself, I went to my favourite coffee shop. I had planned to be up late on Friday and was very tired, so I thought caffination would be my best option. And it might have been had I just came straight home and had Irish tea instead of coffee.

But no, I not only had coffee, I had TRIPLE espresso.

Now here’s the thing - please refer to my No Fly List - I’m not supposed to have caffeine, nor am I supposed to have anything in the bean family. Coffee is made from coffee beans and I DO react to them.

WTF was I thinking? My rationale at the time was:

• Want treat!
• Can’t get my usual mocha because I’m not supposed to have cow’s milk so I know! How about straight up espresso then!
• Wow that’s only a little bit for a single, that won’t do. I’ll take a triple and just sip it over time.

Dumbass.

I wasn’t able to sleep til 3am Saturday and then I was only able to stay asleep for five hours before getting up for the day.

The first thing I noticed Saturday morning was how badly ALL my joints ached and throbbed. I have confirmed osteoarthritis in my cervical spine, my thoracic spine and my knees (with crepitus also present in the knees). All these areas were KILLING me starting Saturday morning.

My blood sugar was wonky for all of Saturday. I didn’t want to eat because my stomach and intestines felt gutted and pock-marked from the coffee. So the hypoglycemia got worse and I got a bad headache. And then my knuckles and cuticle-area of my fingers began to split open and bleed, which happens EVERY TIME I eat anything in the legume family.

The depression and anxiety set in today.

I went grocery shopping this afternoon, and became quite bitter over two things:

1. The scarcity and choice of gluten-free, dairy-free, high fructose corn syrup-free products that don’t taste like ass.
2. Why gluten-free, dairy-free etc products must cost an arm and a leg.

I mean, I know WHY such products cost an arm and a leg - it costs a tad more to produce, and the companies realise that by making it a ’specialty’ item, they can also cash in with extra profit because they are greedy assholes.

But for chrissakes people, if you’re going to make a cheese that is lactose-free, WHY IN THE NAME OF ALL THAT IS HOLY DO YOU HAVE TO PUT HIGH FRUCTOSE CORN SYRUP IN IT?!?!

I found myself exclaiming aloud, “CORN SYRUP?!? Oh you have GOT to be fecking kidding me!” and I threw the cheese back down and walked off. As I walked off, a man looked up from his shopping to see what I was on about, and peered over at the cheese in question. GOOD. I hope he gets on a rant, too.

I was also disturbed to discover that my favourite brand of chunk light tuna fish, which is packed in water, also contains soy. WHY did I never see this before? It’s because I trusted the front of the can - when it says it’s packed in WATER, I trusted that it’s JUST water, not ALSO “vegetable broth (soy)” as listed in the ingredients on the back of the can!

First off, I can’t have soy. Soy can’t be trusted to not be genetically modified. Soy is in the legume family and I am allergic to legumes - I get atopic dermatitis flareups. Soy contains phytoestrogens, which are bad for people with endometriosis.

Secondly, eating tuna packed in water vs. vegetable oil is healthier for you because it contains less calories and fat.

Third, tuna packed in water retains more omega-3 oils than tuna packed in vegetable oil.

This is my life - I constantly have to recheck foods I’ve previously approved because I end up missing something, or there’s been a reduction in quality to save a few bucks and cheaper/dangerous ingredients have been added or substituted.

I had to go through all the cans of tuna on the shelves to find any that might have ONLY TUNA AND WATER and no other added ingredients. I had to literally sit on the floor as if in a library, checking out the books on the bottom shelf. Ugh.
I finally found canned tuna in water and water only, but it was only 4.5oz rather than the usual 6oz can.

Of course, the can of tuna that does not contain additional destructive ingredients but contains roughly ⅙ less amount of tuna is twice the price as the other cans of tuna. It comes in a fancy gold can, and is branded with a heart logo which reads “natural source of OMEGA-3″ and “VERY LOW SODIUM”.
Further, it’s not the tuna I want. It’s not chunk light tuna. It’s albacore tuna, which contains more mercury than light meat tuna.

So let’s get this straight… you’re telling me to choose between SOY added to my tuna, or mercury poisoning?

WTF!!!!!!!

My mental stability began to degrade further at this point. I talked out loud again, cursing the fact that I now have to spend more money even for my tuna, just because of my health issues.

To top it all off, when I got home from the grocery store, I found more ants in the kitchen.

I had a full on crying breakdown at that point.

I’ve spent the past week not eating in the house because the sight of ants takes away my appetite. It’s winter in California, therefore everyone’s house is under attack by tiny ants. It’s just how it goes.
I’ve been grabbing what little food I’ve had left in the fridge and taking it with me to work this past week - eating breakfast on the way or when I get in to work. When I got home from work, I didn’t eat dinner, or I went out to eat instead.
I thought two applications of borax/sugar gel from the exterminator (he showed up for a second time this past week), and all the orange ‘Bugs R Done’ spray I’ve been applying would surely have killed those suckers off by now.
But no.

So I was not eating, and at night I was suffering nightmares of waking up with ants on my face. Then I top off the week with a deadly treat.

Nice going.

So here I am, supposed to be in bed, and I’m not tired, and I have anxiety, and my entire spine from top to bottom is aching.

All because I had coffee on Friday.

I want to stay up all night researching the biology and mechanics of caffeine on the system, so I can blog about it on the main site, but I can’t. It’s one more thing to add to my extensive list of things to research for myself and others, so we have more than “I was told I should stay away from this” and really know WHY we MUST stay away from it.

You’d think that after nearly nine years of diet modification and identifying foods that make things worse for me, that I’d have developed enough discipline to stay away from those bad foods. Instead, I’ve just become bitter and resentful, and every now and then I cry out “I deserve a treat dammit! I want that tasty food too!”
And I suffer the consequences. I’m not really saying I deserve a treat after all, am I?

What I’m really saying is that I think it’d be a fine day to punish myself. Wow I’m feeling GREAT, I think I’ll give myself a nasty food reaction. Yeah! Now doesn’t that feel better!

My cousin, who has end stage hepatitis C, is totally right. He was ranting to me about similar in recent months. He said, “We could be dyin’ from a bullet wound and shoot ourselves again. Hey that’s not enough pain, gimme a knife!”

Yep.

When will I learn.