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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stay tuned…

Wow, déjà vu.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stupid immune system.

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

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.

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 last post was on April 26 and then you’ve heard nothing from me since that time. This is because I was out of country on honeymoon for most of May. :)

I just wanted to wrap up April, before my next post, which will summarise May.

April 27: Spotting with moderate cramps. I took half a Tylenol 3 after lunch at work.

April 28: Done but had cramps around 8:30pm. I took 2 motrin.

April 29: Cramps (I didn’t note the intensity of the cramps).

It must be noted that I took no time off work for endometriosis pain in April 2009.

I was off sick on the last day of the month due to sinus infection which resulted from a virus I caught from the workplace as of April 15.

I am still in awe that I was not bedridden and off of work, and I feel fortunate that the worst of the pain hit over a weekend for me.

I’ve not journaled about this until now because I wanted to make sure I got the test results back, first. And well, it was humiliating to have to go through this.

I alluded to my problem back on March 25 and March 26.

Well, on March 28 when the pain happened again during and after intimacy, I made an emergency trip to the doctor’s office.
I wasn’t due for my annual pap smear until April 20, but was told I should have it done, NOW. I want to let it be known that this is the same doctor I complained about in October, 2007 and in January, 2009. But she was the only doctor available who could see me on such short notice that day, who had access to my medical file relating to endometriosis.

During the pap smear, I was also tested for sexually transmitted diseases (STD), and was told that the test results would be due back on Thursday, April 2.

After the exam, I got dressed and waited. The doctor came back in and said to me, “How do I say this tactfully…uh…are you sure your boyfriend hasn’t been stepping out?”

First of all, he’s not my boyfriend, he’s my HUSBAND, and NO, he hasn’t been sleeping with other people. I was infuriated that this would be the first thing a doctor would suspect, given MY personal medical history, which this office has been made aware of several times.

She told me the reason why she asked the question was that the pap smear came back positive for cervicitis. I asked her if there was anything else that might cause cervicitis, because I know I don’t have a friggin STD. I cited examples of clean pap smears three times within the last ten years. The doctor shrugged and said she didn’t know of any other cause of cervicitis. What a crock of shit.

So I went home and researched it and found that a latex condom allergy could lead one to cervicitis. I thought about it some more and decided that digital play with improperly cleaned fingers and fingernails could lead me to cervicitis, as could bumping up against the anus during sexual intercourse. In my case, these are all plausible, because I am so sensitive to infections.

I called my gynecologist on Monday, March 30 to let her know I had my annual pap smear early because of an infection. We talked about everything that might lead to cervicitis. She totally agreed with me that digital play with improperly cleaned fingers and fingernails could lead me to cervicitis, as could bumping up against the anus during sexual intercourse. My gynecologist was really upset with the doctor who saw me on Saturday, saying she should have put me on antibiotics right away, to avoid the infection spreading to the fallopian tubes and ovaries and causing permanent damage. She called in doxycycline and flagyl over the phone, and I started on the antibiotics on Tuesday.

Two days later, I saw my gynecologist and she did a follow-up pelvic exam. This time I had no pain. She performed additional testing and told me the antibiotics were obviously working.

Despite knowing the above-mentioned things about my reproductive health, the STD test results from my primary care doctor were not back by Thursday, April 2.
I called on Thursday the 2nd, Friday the 3rd, Saturday the 4th, Monday the 6th, Tuesday the 7th, and Wednesday the 8th, and the goddamned results were not in. I grew angrier with my primary care doctor because she’d not checked in on me once that whole week. I would have been made to suffer an additional 12 days had I not spoken to my gynecologist.

Sometime after 8:00 at night on Thursday, April 8, the primary doctor called me to tell me that the STD tests came back negative for gonnorhea and chlamydia (DUH, AS EXPECTED), and that the pap showed no abnormal cells, no pre-cancer worries, nothing.

She stated that she doesn’t know what’s wrong with me, and to please follow up with my gynecologist.

I took the opportunity to tell her my gyn was already in the loop and was not happy with her decision to not put me on antibiotics right away. The doctor said she’d had a reason at the time for not putting me on antibiotics, but had since forgotten it.
Nice, eh?
I repeated what my gyn said - that she was afraid of permanent damage to the tubes and ovaries if the infection were allowed to proceed, and given that the lab results didn’t come back for two weeks, this is a HUGE problem for my health and safety. The doctor apologised but didn’t seem sincere in her apology.

Because I took a new job, I can no longer make my appointment with the gynecological oncologist or my endocrinologist. I had to cancel both because they are during working hours. Of course, they do not offer weekend or evening appointments, so I will be forced to take time off work. I’m going to see if I can get the appointments on Friday, may 29 - the day after I return from our honeymoon.

In the meantime, I’m glad to have proof once again that I don’t have an STD, just to shut these damned doctors up, because it’s the first thing they always leap to whenever there’s a gynecological issue, regardless of the fact that I have a documented non-STD illness in that region.

GAH THIS MAKES ME SO MAD TO HAVE TO GO THROUGH THIS EVERY TIME I HAVE ANOTHER COMPLICATION FROM THIS ILLNESS.

But on the other hand, I’m even more scared. They say they don’t know what’s wrong with me.

So what’s wrong with me then?

The fear creeps in. The big ‘c’ word looms regardless of the family doctor saying she saw no abnormal cells on the pap.

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.