I Will Not Suffer In Silence

I did go to work that next day on March 10, and I worked nearly the whole day before the pain decided to come back and bitch-slap me one last time. I left an hour early. So this month, I’ve only missed one day and one hour of work total on account of george, and once again I was never fully bedridden during this cycle. That’s two months in a row now!

This is really great post-op news!

Next period is April 1st (ha-ha). We’ll see how it goes. I remain hopeful.

The main complaint for this month is attack of the killer viruses.

February 28th I came down with the flu, and that was on a Monday. I went to the doctor, who listened to my lungs and remarked that he heard “crackles.” He listened again but I had a coughing fit, and that seemed to clear things up. I joked that he’d have to wait for the next build-up before determining “crackles” again.

The doctor asked if I’d had my flu shot. I said no, because I’m allergic to eggs (flu shots are created using chicken eggs, did you know?). He then suggested I try Tamiflu. I told him I have previously examined the drug and its side-effects, and decided that my sensitivity to meds, coupled with dealing with autoimmune disease, did not make it appealing to chance multiple side effects on the off chance that the flu might be lessened by one or two days.
The doctor asked what autoimmune disease I have, so I told him I have endometriosis. He looked annoyed, put down his pen, looked at me and said, “Endometriosis is not an autoimmune disease.”

My jaw dropped. I politely told him that the confirmation on this is fairly recent, so yeah, it’s actually an autoimmune disease. Meanwhile, his intern student doctor, standing to my left, murmured under his breath, “yes, it is an autoimmune disease.”

The doctor retorted angrily at me, “It is NOT an autoimmune disease!”

I thought for sure his next comments would be something about endometriosis MERELY being painful period, and why don’t I try some Midol to ease the cramps…he was at that level of condescension.

I told him “First of all, I’m the one with the disease, so I’ve done my homework, so yes, it IS an autoimmune disease, and secondly, there has been proven anomaly on chromosomes 1 & 7, WOULD YOU LIKE COPIES OF THE STUDIES, since I am subscribed to medical journals?”

The intern again quietly agreed, “it is an autoimmune disease.”

The head doctor wanted to hear none of it. Red-faced with rage, I informed him that I’d be inserting the studies into my medical file for his education.

THIS IS THE TWENTY-FIRST CENTURY, AND YOU ARE IN A SUPPOSEDLY DEVELOPED NATION, IN A SUPPOSEDLY HIGH-TECH DOCTOR’S OFFICE, TELLING ME WITH YOUR IGNORANCE THAT YOU ARE NOT UP ON THE LATEST MEDICAL RESEARCH?!?!?!?!

This is the second doctor’s office I have chosen in this city. I see I may have to fire this office, too. Sadly, I’m certain that all local doctor’s offices are this stupid. When I was leaving the exam room, the intern held the door for me. I smiled and quietly thanked him for backing me up. He grinned and replied that he was looking forward to the heated debate on the topic. It seemed like he was trying to tell me that he’d be in trouble for agreeing with the patient, and that it wasn’t his first run-in with the doctor. Ugh, poor intern. I sincerely hope he makes it out of med school in one piece.

When I got home from the doctor’s appointment, I called the office and told them to put it in my file that I will never see Dr. James E. Eichel again. As a matter of fact, my husband reminded me that the reason he left that doctor’s office the first time around in search of another family practice was because of Dr. Eichel’s condescending attitude.
I did a background check on him, nothing comes up. But take it from me and my husband, the guy’s a total asshole. Also, check out doctor reviews on the web – numerous people have found him to be condescending and rude.

I was so angered by this doctor telling me that my debilitating chronic illness is not in as valid a category as he feels it should be, that it has taken me 24 DAYS to write about it, and even now, this is the best verbiage I can find without using a string of expletives and then throwing something across the room.

So that was Monday, February 28. I took the whole week off of work to get better. However, by that Friday, the flu had turned into bronchitis. I was back in the doctor’s office, and again a doctor listened to my chest. By now I was seriously wheezing, too. The doctor said she heard “crackles”. Hm, this is the second time in a week that word was used, so I asked what it meant to detect “crackles.” She said it means pneumonia at worst. I asked if Dr. Eichel had put it down in my chart that he’d heard crackles back on Monday.

GUESS WHAT.

He made no mention whatsoever!

ASSHOOOLLLLLLLLLLLE!

So I was sent to the hospital for a chest x-ray. Thankfully, it came back normal. However, I was diagnosed with bronchitis and put on an inhaler.

The following Monday is when I got my period. I went to work that week, and only missed one day of work, and took it as easily as I could given the bronchitis and menstruation. I hacked a lung every day, and alarmed the students some of the time with my coughing fits. Being outside for a couple of hours each day didn’t help either, what with the cold, wet weather we’re having.

Ten days later, just as the bronchitis was clearing, I felt well enough to go dancing. We got home late, and I got about three hours of sleep, got up and went to work.

By the end of the day, I had a sinus infection. Go me. :(
Three days later, I had an ear infection.

Friday, March 18 I was back in the doctor’s office. The doctor, thankfully my preferred doctor this time (April Fredian), walked into the exam room, took one look at me, and sighed, “you got it, didn’t you.” She told me that this flu-turned-bronchitis-turned-sinus-infection is a really nasty thing she’s seeing in a third of her patients, and even she did not escape it. She estimated that I will be sick for another month and a half.
Dr. Fredian examined my lungs (clear) and my ears (left eardrum inflamed, could rupture), and my nose (more allergenic than viral). I was told all I could really do was take anti-inflammatory meds and hope my eardrum didn’t burst. She gave me codeine cough syrup and suggested I try Afrin for the allergy-ridden nose. I asked if antibiotics would help with the ear infection – she said if by Sunday my ear still hurt a lot, to get on antibiotics. I asked what kind, cuz I still had a z-pack at home. She said the z-pack would do, and then amended her prescription, saying if my ear still hurt by Saturday, that I had her permission to take the antibiotics.

So on Saturday, the ear still hurt, and I started the antibiotics.

Today was Day 5 of the z-pack – the last day – and dammit if the sinus infection and ear inflammation didn’t get worse. WTF.

So I’ll be back in the doctor’s office again tomorrow for further advice. I’ll be demanding ear drops or something. UGH, I just want to be well again.

March 17 was 90 days post-op, and I had promised myself by March 1st I’d be back in the gym again, toning up after all that downtime from surgery. And BAM instead I get a month of wheezing and staggering amounts of lung and sinus butter. I cannot believe the head and chest can produce so much phlegm. It’s disturbing.

Oh, to go back to endo for a moment – my husband and I were intimate on March 20 and I did experience dyspareunia afterwards, but it didn’t last more than a couple of hours. It was sharp, intermittent pain – the type I thought would get worse and last for days as usual. But it didn’t! YAY!

Going back to the ear infection – yesterday I was so depressed by not being able to get back into the gym that I literally cried.
The ear pain got so bad today that I had to plug my left ear for the last hour at work, and I felt like crying from the resonating noise (I work in a preschool in daycare mode this week, so you know it’s anything but quiet).

I got home and took Tylenol 3. I’ve been in a stupor ever since, but at least I’m dissociated from the screaming tinnitus (both high and low drone pitch simultaneously in both ears, plus the pounding eardrum pain in the left ear).

That’s all I’ve got. Great news on the endometriosis – keeping that in mind through this depressing flu season crap.

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

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

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

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

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

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

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

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

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

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

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

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

ADHERE!

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

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

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

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

My current treatment plan:

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

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

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

I have spent all day today going back through this blog and digging out information for MyMonthlyCycles.com.

Awhile back, I registered with a bunch of symptom tracking websites to try ’em all out. So far, MyMonthlyCycles.com works the best for period tracking, but it’s obvious that the site is there for young women who want to breed, and the site has a lot of limitations to women like me with gynecological disorders who are trying to track our periods.

Despite the limitations, it still seems to do the best report output of compiled data.

Because I have spent all day on this, I don’t feel like rehashing my symptoms here in prose, so I’ll just give the straight up info I’d spewed on the symptom tracking website:

Tuesday, June 1, 2010:
Tylenol 3 at bedtime – partially for cramping, partially for joint pain, partially for brain weasels. This is also the day I had to go to E.R. after going into respiratory distress over an assistant teacher’s perfume. I received 3 shots that day: 1 Benadryl, 1 Atavan, 1 Epinephrine. I slept for most of the day and into the night.

Wednesday, June 2, 2010:
Took 600mg advil before bed due to cramping.

Thursday, June 3, 2010:
Some cramping, nausea, 99.9°F fever.

Friday, June 4, 2010:
My Period – First Day? Yes
Flow: Spotting Flow Color: Brown Clots: none
Comments: Mild cramps – intermittent. Nauseous. Pain around a 4 on the scale. Super tired – in bed by 9pm.

Saturday, June 5, 2010:
Flow: Medium Flow Color: Brown Clots: none
Comments: Spotting turned to flow, then got heavy by nighttime. 7 on the pain scale.

Sunday, June 6, 2010:
Flow: Heavy Flow Color: Dark Red Clots: Medium
Comments: Clots began by nighttime, and I passed a medium one – it took from 10:30pm to 12:30am before it was finally out, and I nearly vomited from the pain. The clot was thick, long. Not very wide. Consumed roughly 2.5 Tylenol 3 and about 1,600mg Ibuprofen for the pain. Had heating pads on all day and night.

Monday, June 7, 2010:
Flow: Medium Flow Color: Red Clots: Small
Comments: Heavy flow in the morning, then medium, then heavy, then medium, then light by nighttime. Took the day off work. Consumed roughly 1,200mg Ibuprofen and 2 Tylenol 3.

I’ve also been having crazy weird dreams and nightmares for the past three or so days – even before I took any Tylenol 3.

I’d like to also note that I have in the past week consumed a lot of cow’s milk ice cream, a lot of mint chocolate candies, and a lot of gluten-free ginger cookies due to out of control sugar cravings.

I have been moderately depressed since my trip to Michigan (May 14 – 23 was the trip), because I am triggered by the horrid housing state in which my mother continues to let herself live in.

Lastly, a note about the weather – I missed out on another gorgeous warm and sunny weekend because I’ve been on the couch since Friday night.

I am very happy to have received a teacher appreciation award, a free luncheon, free desserts, and a gift certificate.

I am PMSing fiercely and needed 1,000mg Ibuprofen to get through the workday today. My lower back killed me all day. I had moderate low uterine cramps all day. I burst into tears at the sight of my teacher appreciation gift, startling those around me.

I could not eat the lunch except for the salad because it was all glutenous. I could not eat the desserts I wanted to eat because it was all glutenous, except for the flan and the ultra sugary meringues (well I’m not even supposed to have those cuz I can’t have eggs).

Several teachers and parents were perfumed with toxic chemicals which gave me sore throat, headache, sticky eyes, sudden extreme fatigue, irritability, and made me gag and sneeze a lot.

When I got home from work, there was nothing ready to eat. I hadn’t eaten any protein all day. My husband preferred grocery shopping to dining out so we went to the grocery, where I was assaulted with toxic fragrances from people in the aisles of the store. I became openly irritable and nearly broke down in tears. We got most of what we needed and got out of there. We tried to go to Walgreens to get my prescriptions for Tylenol 3 and Vanicream body lotion but I had to leave cuz a lady who stepped in line next to me (not behind me mind you but next to me) was heavily perfumed and I began choking.

I got home, we made ourselves dinner, we sat down and ate dinner.

And then I had a food reaction.

It started with a headache half-way through dinner.

After I was finished eating, I got up to rinse my plate and got dizzy. I made it to the sink and began washing my plate and I got dizzy again. And again. I slowly made my way to the bathroom and in the mirror I beheld a beet red face and a blotchy red neck and chest. That means food allergy.
My pulse was within normal range but my temperature was 99.7°F.

I took a children’s benadryl tablet (I can’t take adult dosage because I get anxiety/panic/palpitations).

Then I went and changed into my pajamas.

When I took my bra off, my upper chest screamed in pain because the boobs had dropped out of the bra, and the pressure/weight of the hanging breasts makes me want to scream. My nipples too make me want to scream, they’re so tender. This is day three of breast and nipple pain, but today the pain is the worst yet.

So uh, today is fired. I’m going to bed. Good night.

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.