I Will Not Suffer In Silence

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.

Around 9:30-10pm tonight, I was sitting on the couch watching TV with my husband when the pain set in again. Only this time, it was far worse than the pain I’d had all day.

Going by the Mankoski Pain Scale, I was a 7 all day. But tonight, it reached 8.5.

All day, I’d gotten by with Motrin and half a Tylenol 3 at regular dose intervals. But tonight when the pain reached 8.5, I took a full Tylenol 3, did the ‘child’s pose’ yoga pose, stretched my back, did my breathing exercises… none of it helped.

It wasn’t until I took a second Tylenol 3 that the pain slowly diminished. Normally I’d be passed out by now but I’m left with jaw clenching from all the codeine. Not good for my old TMJ problem (going back to the head injury in the car accident in ‘94).

My husband wondered if I might be developing a tolerance to the Tylenol 3.

How?

I only take it once a month for a few days at a time. And today, I was stoned silly on just half a Tylenol 3 every 4 hours.

I hope he’s not right.

In any case, the pain finally went away. The bleeding ramped up but not by a lot during the pain spike.

I put myself in all my pain moment on video. First time I did that. I’ll post the video tomorrow.

The reason for the pain spike? I am wondering now if it was the eggs that were mixed into the pad thai I had for dinner. I tried to pick the egg bits out but I probably didn’t get them all.

Last time I ate eggs while menstruating - I had them sunny side up and ate them for dinner - this was in April, 2008 - and I ended up on the floor screaming in pain and had to be taken to E.R..

I’ve got an egg allergy that normally leaves me with racing heart and panic feelings. But when combined with endometriosis flareup, it makes for much danger.

That’s all I can think caused the pain spike tonight. Tiny bits of egg.

My ma has been told for years that she has hypoglycemia and is borderline diabetic.
After I had pancreatitis at the young age of 21, I began to also exhibit hypoglycemia. I was told that this was due to the pancreas being forever weakened because it had become acutely inflamed. The cause was never determined, though one doctor speculated I must be an alcoholic because I was 21 years old and in college, so OBVIOUSLY I was a rabid partier (bugger the fact that #1 I commuted to college and also worked full time to help my ma pay off her debt, #2 I was still quite naive and under the influence of my Christian Fundamentalist mother and #3 I was working as a daycare teacher in a Christian daycare).
A nurse speculated that the acute pancreatitis was likely the result of being put on Cipro (very strong antibiotic) for recurrent sinus infections during my first couple years working with children in a daycare setting.

I’ve always gone with the nurse’s idea of how the pancreatitis happened, because I certainly wasn’t a fracking alcoholic.

Many years later, in 2006, I was doing diet elimination to try to see what foods might be making my Endometriosis pain worse. I took out wheat and 2 weeks later, added it back in.
My body let me know wheat was NOT okay.

When people ask me what my reaction is to eating wheat, I always say it feels like hypoglycemia. I get irritated, I get a headache, nausea, eye pain, tunnel vision…these are all the things my ma says she gets with hypoglycemia, so I’d assumed for years that I too had hypoglycemia.

The problem with that theory is that once I cut wheat out of my diet for several months, I stopped getting ‘hypoglycemic’ attacks. So I’ve been trying to convince my ma that she doesn’t have hypoglycemia or borderline diabetes. If she just cuts wheat and yeast out of her diet like I did, she may find that she too recovers from this affliction. But she won’t have it. And other people I’ve talked to can’t seem to see the connection.

In 2006 and again in 2008, I was tested for Celiac, and it came back negative both times. But I’m told I present classic for Celiac. I’ve been urged to do an endoscopy but why go through that when I can just abstain from the foods?
Then again I guess it’s best to know for certain if I have Celiac, cuz of what I’m about to show you.

Here comes the HA! I TOLD YOU SO part…

Researchers believe Diabetes and Celiac disease linked
LONDON, U.K.– Scientists at the University of Cambridge and Barts and The London School of Medicine and Dentistry confirmed Type 1 (juvenile) diabetes and celiac disease appear to share a common genetic origin.

Their findings, reported in the New England Journal of Medicine, identified seven chromosome regions which are shared between the two diseases.
The research suggests that type 1 diabetes and celiac disease may be caused by common underlying mechanisms such as autoimmunity-related tissue damage and intolerance to dietary antigens (foreign substances which prompt an immune response).
Type 1 diabetes is an autoimmune disorder which causes the body to attack the beta cells of the pancreas, limiting its ability to produce the insulin necessary to regulate blood sugar levels.
Celiac disease, also an autoimmune disorder, attacks the small intestine and is triggered by the consumption of gluten (a protein found in wheat, barley and rye) and cereals. The development and anatomy of the small intestine and pancreas are closely related, and the gut immune system shares connections with pancreatic lymph nodes, which have been linked to an inflammation of the pancreas and the destruction of beta cells.
The researchers, were funded by the Juvenile Diabetes Research Foundation, the Wellcome Trust and Coeliac UK, believe that these regions of the chromosomes regulate the mechanisms that cause the body’s own immune system to attack both the beta cells in the pancreas and the small intestine.
Their results suggest that type 1 diabetes and celiac disease not only share genetic causes but could have similar environmental triggers as well.
Type 1 diabetes and celiac disease together affect about 1% of the population.

Good times.

Well I’ve gone and done it again. I’ve eaten a forbidden food and now I’m paying for it. My entire body feels like fleas are crawling and biting me.

I had 3/4 cup of Thai Kitchen brand boxed Spicy Thai Chili Jasmine Rice.

Within half an hour of eating the rice, my whole body got itchy, I felt light-headed, headachey and sleepy, and then the anxiety and heart racing began.

The food is billed as gluten free, which is why I bought it. However, it also contains MSG in the forms of Hydrolyzed Soy Protein and Autolyzed yeast extract. I saw this on the label when I bought the food, but I ignored it, thinking I’d be alright, because I didn’t remember having a reaction to this rice before.

Well, now I’ve learned my lesson. No MSG in any form, under any relabeling. It’s a neurotoxin, it’s dangerous, it’s already on my NO FLY list, and it will kill me.

The worst part is waiting to get this crap out of my system. *itch itch itch*

Tonight my man took me out to sushi. I brought along my wheat-free tamari.

We tried two new items; king oyster mushrooms, and the waiter’s special tea that he’d gotten from a friend touring in Taiwan. He wasn’t sure what kind of tea it was, but said the loose translation of the Chinese meant ‘mountain tea’, and that it was a famous brand in Taiwan. I peeked inside the cup as the tea was brewing, and saw that the leaves were tiny rolled up balls. As the tea steeped, the balls opened up to lovely green leaves and stems, and tinted the water a greenish-yellow
When I got home, I researched the tea - I think it was an oolong tea, because it had a lovely perfumey scent/flavour and matched the physical description of what I saw in my cup. I highly doubt either of the mushrooms or the tea caused the GI reaction that I had about an hour after eating. I only had one episode of diarrhea, and barely any cramping leading up to it, so it was a mild reaction by my body’s standards.

That leads me to believe that either the rice was glutinous or that the gluten-free tamari somehow had some gluten in it. I researched the tamari on the web and found out that other people had complained about getting sick after using the wheat-free tamari.

Person #1 (although the people on the forum were of no help whatsoever to her).

Person #2 (2nd reply in the thread)

Within that second link, I saw the term ‘histamine toxicity’, so I looked it up and found this educational article.
Also in that second link, people talked about the possibility of mold being in the soy sauce.

So the possibilities I have are:

• Soy allergy
• Gluten was in the rice
• Mouldy soy
• Yeast contamination somehow

Then again, one of the dishes I had contained a sauce on top of the sushi roll. I wonder if there was any gluten in the mayonnaise-based sauce? It’s difficult to find these things out when the people at the sushi joints we frequent do not speak much English.

This is why I gave up eating Chinese food. First they told me “oh yes - vegetarian” when I would ask if a meal was veggie only, no meat, come to find out that it had pork in it (back when I was vegetarian) … and then they told me “no, no wheat, no gluten” when I’d ask, only to have a fried batter dish served to me. This happened at too many Chinese restaurants to mention over the years. I just got to the breaking point and fired Chinese food from my diet rather than continue risking getting sick.

I really really don’t want to have to give up Japanese food, too.

My next steps:

• Go back to the same restaurant
• …with a new bottle of wheat-free tamari
• Ask for the dish I got again, sans the sauce
• Try the mushroom dish again

And Wait For It.

November 5, 2008 edit: Sorry it took so long to update. The culprit was the sauce they put on top of the roll.

I didn’t have pain on Friday morning, though I was still bleeding. So I had really bad pain and bleeding for three days - on Tuesday, Wednesday and Thursday - this time around. That for me is about right. A five-day cycle overall, with three really bad days.

I did go in to work at the new assignment on Friday. This place is a government-run facility, I’m told. There was order, stability, curriculum, and professional staff. I asked if they’d need me again soon. By lunchtime, they asked me if I really did want to come back, because they saw how well the kids responded to me, and said they liked my work.
Even though I have social phobia with other adults, and even though I felt extremely awkward, I really liked that center so much better than the first one I was assigned to.

By the end of the workday on Friday, I’d had a child plop down in my lap during story time, and another child drew me a card with flowers on it, and yet another child grabbed hold of the back of my shirt and decided to be my shadow during recess. Mad giggling ensued when I turned around and asked who was behind me - she moved with me every time I twisted and turned - obscuring her identity. I figured the only way to get her to let go of my shirt was to climb the monkey bars and go down the slide. It worked - and I “ran” to get away from her again, but she’d catch me every time and we’d have to repeat the scenario. ;) After the second time around, I had upwards of six or seven children playing this game, running after me, giggling like crazy. :)

George went away by Friday evening, and just in time for a cold to settle in. I woke up in the middle of the night with phlegm and a very sore throat. Ugh. I began taking 1,000mg vitamin C and popping the Cold-Eze cough drops again (this cold tried to settle in a week or two ago and I thought I’d fought it off).
I’ve had this sore throat on and off since Friday, and today it turned into a cough. Great. Good thing I have leftover codeine cough syrup from a year or so ago when I was sick. Hopefully I can fend the cold off again.

That’s the risk you take when working with children. Their germs are evil little mutating bastards. I have this saying - “children will kill ya!”

Friday night, my man took me out to dinner at our favourite Thai restaurant, and afterwards, we walked around town a bit.

On Saturday, I attended a friend’s birthday party *and* another friend’s wedding.
Today, we gathered at the bride and groom’s house for brunch, and watched them do the official signing of all the documents. I got to hear funny stories about the groom - I always like to hear families tell such stories. I’m a huge genealogy fan, so hearing anyone’s history, no matter how embarrassing or not, holds a lot of interest for me. I am fond of seeing families together, chatting, hanging out - doing what our family used to do before gramma and grampa moved back to Kentucky and the family fell apart without their parents as a solid rock and anchor nearby.

Bah, but I digress.

It was when we were on our way home from our friends’ house that my cough set in. And now I’m back home again, and I’m depressed all over again. I have our own wedding to continue planning. I feel alone in this planning.

Bleh. I’m so glad I don’t work tomorrow. I’m so glad I insisted on a 32-hour work week. I need tomorrow as a mental health day, and actually, I wonder how much sicker I’ll get with this cold. It’s definitely not helping with my depression. I’ve been depressed since the beginning of June - at least, that’s what my diary says.

I don’t know what else to say. Journaling got a lot off my chest, but I’ve not solved anything and I don’t feel any better emotionally like I usually do through journaling. I don’t know what else I can say or rant about in an attempt to make myself feel better.

Hmmm.

Maybe drinking a lot of alcohol socially over the past two weeks hasn’t helped my depression, either. :p

I know what would make me feel better. Winning the friggin’ lottery would make me feel better. I don’t want to work anymore. I don’t want to worry about rent and bills anymore. I don’t want to stress over wedding finances anymore.

One last thing, just so I have it preserved here - my thumb is doing much better. Ever since yesterday morning, or was it Friday night?… I’ve been constantly applying Curel lotion to my thumb. It’s healing up nicely, and much faster than applying that stupid steroidal ointment I was given from my doctor. I wonder if I’m also allergic to that. Wouldn’t surprise me. My ma is allergic to cortisone, and only found out when she had it injected for back pain. She can’t even have it topically - it makes her rash out and also look like some kind of leper.

Righto, that’s all I got.

On the last day of my camping trip, the sun came out and we went out on our friends’ boats for the day. I’d been sitting on the back of my friend’s boat, dangling my feet in the cold water, when I decided I’d had enough sitting in the sun.

I got up, bare-footed, and climbed back into the boat. When my right foot came down on the back seat of the boat, the foot fell between the boat cushions.

This acted as some kind of suction or something, and immediately the boat cushions enclosed around my leg and I couldn’t get it out.

It was like slow motion as I grunted and yelled, instinctively trying to yank my leg up out of the boat cushion’s jaws, while everyone turned and stared in awe and terror, not knowing what was going on or how to help me in time before I freed my leg.

By the time I got my leg free, there were already TWO giant bruises forming - one on each side of my leg. This is the second time I’ve been on this boat in two years, and the second time I’ve gotten a big nasty bruise by falling or slipping on this boat in that timeframe.
This bruise hurts, mostly on the inside of the leg, where in the yellowing area there’s still quite a big knot.

Click to enlarge

Click to enlarge

On top of the nasty bruises, I already had a problem with my thumb that was ongoing. Whenever my hands touch chemicals, such as the Chlorox wipes, or straight up bleachwater (which we use in the daycare), my thumb gets the worst case of atopic dermatitis ever. It looks like leprosy. :p

This was made worse by the fact that during my camping weekend, I’d consumed a couple of Luna Bars without reading the ingredients. Luna Bars have oats in them. Oats cross-react with wheat and this makes my skin, especially my thumb, break out. This is painful, because the skin is cracking open and bleeding, and huge flakes are falling off.

The only way to treat this is to slather the thumb with prescribed steroidal ointment for a few days, then slather the thumb with vanicream for a few days, and keep the thumb covered with guaze and tape the whole time.

Click to enlarge

Click to enlarge

On top of the nasty bruises and the thumb issue, I’m depressed because of the abuses and boss issues at work, and now I have the massive pain and bleeding to contend with. I’m NOT happy right now.

Elliptical: 25 minutes at incline 1 and resistance 1, slow to moderate pace, and I STILL managed to pull a muscle in my left calf. 200 calories burned - I quit 5 minutes before the 30-min mark to avoid really screwing myself up.

Arm/Torso machine: 10 minutes on medium-high resistance. 50 calories burned.

Treadmill: 10 minutes at brisk walk (2.5 on the monitor), which actually helped my calf to feel better. 50 calories burned.

After the workout, I went and washed my car, which of course is upper body workout when handling the soap brush and keeping the power wash hose nozzle depressed. Wheeee!

I really need to clean the inside of my car - not that it’s too messy - it’s just that the upholstery hasn’t ever been cleaned and so it kinda smells like old lady in the car.

But first, I’m recharging with breakfast. I ran out of strawberries, apples, walnuts and almonds, so instead of my usual fruit salad, I blended up yogurt, flax seeds and flax oil, honey, cinnamon, a splash of vanilla extract, a splash of orange juice, and a splash of vanilla almond milk. I’m eating 2 fried eggs on top of two gluten-free waffles for protein.

Note to self: pay attention to how you feel after eating the eggs, as they are suspects in a plot to murder you, along with other known killers; caffeine, wheat, yeast, corn syrup, beans and cow milk.

January 6, 2009 Edit: Sorry it took so long to get back to myself regarding the eggs…what happens is I get racing heart, itchy and anxiety/panic attacks within an hour of eating straight up eggs. I can eat eggs mixed into stuff, like in gluten-free baked goods. But eggs by themselves cause a reaction. I stopped eating eggs on their own permanently sometime around November, 2008.

Back on April 14, 2008, I went to the E.R. for extreme pain and bleeding due to the Endometriosis, and I was treated badly and left humiliated.

I wrote a big ‘ol complaint letter and sent it to the hospital within a week of the incident. The person I complained to called back and left a message within a couple of days, and said that while she’d be out of the office until mid-May, she’d have her minions look into this.

I finally heard back today.

Of course, they defend their doctor completely. The doctor who talked to me today even went so far as to say the doctor who treated me is the sweetest doctor evar, and that she’d never hurt anyone. I of course disputed this. He told me she said she’d never forced the pelvic exam, and she’d never stimulated me to loosen me up.
I told him she’s completely full of shit.

There is some good that came out of all of this, however. The doctor told me the name of the woman who saw me that night, and he told me he’ll call my GYN to work out a care plan, so the next time I have such severe pain, I can go to E.R. and get an immediate injection of pain meds and not go through the humiliating experience I went through again.

So I sent a letter to my old GYN, whose office had lectured me back in December to go to E.R. next time I had such horrifying pain. Here is what I wrote:

Enclosed you will find a copy of a bad experience that happened to me upon my visit to Alameda Hospital E.R. on April 14, 2008. I had gone to the hospital for relief of excruciating pain and blood loss associated with stage III Endometriosis.

I had gone to the hospital upon your and your staff’s insistence, after suffering a similar episode of sudden pain and bleeding in recent months.

I want this on record in my file because as of today, [name omitted] from Alameda hospital said he is going to set up a care plan for me, should I need to go to E.R. again. He may need to contact you. More likely though, he will be in touch with the new GYN I’ve started seeing closer to home, at [medical establishment omitted]. But I still want the incident with Alameda Hospital in my file with you, since it was your office who told me to go to E.R.

I feel that the humiliation I suffered at Alameda Hospital E.R. illustrates the problems the medical field still has in dealing with people with chronic medical issues. It had to first take a traumatising, humiliating experience to move forward in setting up a care plan, because neither your office, nor my new GYN’s office, chose to set up a care plan with a hospital local to me IN ADVANCE, when both offices know about the severity of my condition.

Please be proactive next time - if your patient has severe pain and you are privy to this fact, then take the following steps:
• Before you tell your patient to go to E.R. in the event of severe pain, instruct your patient on how to set up a care plan.
• Be sure to interact with your patient’s local hospital to set a care plan in motion BEFORE your patient needs to go to E.R..
That way, the hospital knows who the patient is and treats the patient accordingly, instead of acting from a triage/panic/unknown stance and thereby making things worse.

In my case, my care plan will be that I need an immediate injectable form of pain relief if I enter E.R.. All that can be done for me is to make me comfortable and halt the pain. No pelvic exams, no long waits to figure out what’s going on. I’m on an expedited list for a chronic condition.

Thanks for listening.

George is due in two days. We’ll see how it goes. If I can just stay away from forbidden foods, maybe I won’t have these episodes. I wish I knew what I ate that day back in December when I collapsed from the pain. All I wrote the day after the episode was, “…I collapsed from the pain of my condition twice yesterday and that I’m not sure if it’s from acupuncture the previous day, if it’s from the Chinese herbs I’ve been taking, or if I’m just having a really bad cycle.”

You know what this means, Steph.
Yep, it’s another mandatory food diary. This time, add treatment and exercise to the log.

Ugh. I hate doing those diaries.