Corn syrup observation and general update

Yesterday I observed something interesting – I had an aggrivated bladder after drinking less than half a 20oz of Mountain Dew Code Red® (which contains corn syrup).

Usually I get uterine pain after consuming anything with corn syrup, but this time it was simulated UTI/overstimulation of the bladder. I had painful urgency for the rest of the day.

This morning, I woke with actual uterine cramping. I’m about a 2.5 to a 3 on the pain scale.
I checked the calendar and confirmed that this is also about the time I would normally experience Mittelschmerz. I usually get this mid-cycle pain on Day 8 of the new cycle, and Day 8 was on July 13. So I am at Day 9 and 10 when the bladder and uterine pain hit, and of course it was totally instigated by ingesting corn syrup. I might have not had mittelschmerz otherwise. Ah well.

I also don’t normally cave in to corn syrup anymore. I’ve been in summer school for teacher training, and my diet has gone completely to shit. I’ve been eating Wendy’s fast food burgers for chrissakes. Ugh.

I’m also not getting enough sleep – about 4-5 hours a night, and the homework load is a large part of it. Being in a room with 25 women (including the teacher) is also part of the stress load, because this group is the worst classroom dynamic I’ve seen in a long time. I actively only talk to one person in this group. It would have been 2 people but the other person I met last week was only there for last week it seemed. I’ve already had to have a stern talk with one of the women in the class, due to the fact that she’s behaving like a grade schooler. She was actively talking shit about other classmates (including for a large part me and my co-worker) and had the gall to believe no one could overhear her constant string of negativity. She was beside herself with shame when I confronted her quietly after class the other day.

Anyway, the stress level. UGH. The diet is out of control with red meat, sugar, alcohol, caffeine, and chocolate.

I’ve gotten drunk twice this month (manageably drunk – nowhere near staggering or blackout drunk).

I’ve been having IBS-like symptoms all month, because of how much stress I’m under.

I have had several near-panic attacks (the throat feeling like the fluttering/closing up, and the chest pains/tightness, and the nausea and dizziness), which have hit while driving to and from school as well as at home, and I have had one full on panic attack which woke me from sleep. I thought I was having a heart attack until I googled the symptoms and realised this is what I used to regularly experience back in 2000-2002 and was on Xanax for.
Thankfully, my husband has some Xanax leftover from when he had to fly to Michigan (he hates flying). I took one full milligram of it under the tongue that night of the big panic attack, and it calmed me down within 10 minutes.

The next bedridden time is next Saturday, July 24. It’s probably going to be a bad one.

The good news I guess is that after next week, I’ll be done with the summer intensive school program.

Oh – one last thing – on the chemical sensitivity front, I have only been using Dr. Bronner’s soap, and so my fingers have NOT been splitting open! They’ve healed quite nicely, including my thumb! I carry a wee container in my pocket and use it when I’m at school or anywhere that I have to use a public restroom. My husband filled the soap containers at home with the Dr. Bronners, too. So we have no more of that Softsoap in the house. I’m convinced the Triclosan in it has been aggravating my dermatitis.
I also took care of the chemical attacks at school – I bought Trader Joe’s cleaning liquid, which contains clary sage oil, instead of harsh fragrances and chemicals. I filled up the dispensers with it and the women have been using it without complaint, and I don’t have to run from the classroom at quarter to five in the afternoon anymore.

In the stress department, I have sacrificed eating breakfast and getting dressed just to make time for this blog entry on the state of my health, for my own posterity. I have to leave for school in 18 minutes. :(

Catching up

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 am a can of mystery meat

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

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

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

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

ANYWAY, so Phenergan is out.

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

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

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

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

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

So what does this mean?

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

Go me.

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

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

Day 3 in the Underworld

Today I slept in til 10:30am, but when I got up, immediately the pain and bleeding resumed.

I ate a breakfast bar and the last quarter of a protein bar I didn’t finish yesterday, and washed it down with Almond milk so I could take my medication. I took 600mg Advil gel-caps and half a Tylenol 3.

I heated up two rice pads, and then I could not get comfortable. Standing hurt. Sitting hurt worse. Laying on my back hurt. Laying on my side hurt worse. So for awhile I was okay as long as I laid on my belly on the bed with the heating pads on my lower back. I tried propping up on my elbows so I could be on the laptop, but typing on the laptop meant ‘moving around too much’. :(

I’d say I’m at a 7 on the pain scale.

After a short while, my neck and shoulders had enough of that, whether propped up or laying face down, and of course I developed a headache (thanks bulging disks in the neck).

Now I have reheated the rice pads and I’m reclined against two pillows and a pillow chair. The drugs have kicked in enough for the pain to begin easing off. Sleep will follow soon.

Side note: I’m still having crazy/bad dreams. Could be from the meds, not sure at this point cuz the dreams have been ongoing since a week or so before my period.

Currently it is 65°F outside, bright and sunny. Today I am feeling bad for not being out in it, and yet the brightness is hurting my eyes, even through the windows.

The calm before the storm

This evening, just after 6pm, the pain ceased. This happened after I took the half Tylenol 3 and after I had repositioned myself in a kneeling position over the side of the bed, instead of sitting on the bed.

The bleeding continued, although it eased up a bit. When my husband got home from work, I still told him I wasn’t up for going out tonight. I spent the evening continuing my studies for school.

By 7pm, my knees hurt from kneeling, even though I got up frequently or changed position a bit to ease the weight off the knees, and so I stopped sitting on my knees altogether. I got back on the bed to continue my reading, and stretched out my legs.

Sitting on the bed or the couch this time around does no good for my pelvic pain – it kicks it back up again. So I laid on my side until my arm and shoulder became painful, then I switched sides until the other side became painful.

By 9pm, I grew restless and stood up as I read my homework. I carried the book around, marching, stretching my leg out behind me, in front of me, one at a time. I leaned forward with my butt out and back as straight as I could. All of this stretching felt good.

The restlessness happens every month after I’ve been bedridden for a couple of days. It’s normal, of course. When the lull in bleeding and/or pain happens, the restlessness increases, and I get impatient.

I know that this is the calm before the storm. I know that The Last Gasp is coming. I know that I will be pain free with little to no bleeding for up to 24 hours before the pain and bleeding return again full force for half a day and then winks out until the next menstrual cycle. This is how it is with my period.

And so after two days of heavy pain and bleeding, here we are at that moment – the calm.

In my impatience to hurry up The Last Gasp, I stretched so much that I have the post-exercise feeling in my legs. The pelvic pain has kicked up to about a 2 on the scale.

But it seems no matter what I do, daring The Last Gasp to just get it over with already, just doesn’t work – it won’t happen on command. I swear to [insert deity here], I have in the past willingly in a dare routine, ingested corn-syrup-ladden beverages to try to provoke the pain and bleeding again, just to get it all out, done and over with. And it didn’t work.
I have jumped up and down to try to shake loose the debris inside my uterus. I have run in place. I have stretched as I did tonight. Nothing works. I’m in The Calm before the storm.

It’s SO bizzare.

George is in there, snickering at me, biding his time, and he’ll unleash The Last Gasp only on his time.

What a bastard.

And so here I remain in the Underworld. In Limbo. I’m not free to go, yet.

12:32am edit:
Around midnight, as I was telling my husband about the bizzare dream from last night, the bleeding, nausea and pain ramped up again. It had been six hours of relative calm before the next wave.

I wonder – me laying on my back around 10:30pm, bent over the side of the bed, performing fascia manipulation on my abdomen – did that help restore the flow and thus the pain and nausea?

I wonder – did the stretching I’d done earlier help to restore the flow and pain and nausea?

I wonder – me getting nervous and scared during the retelling of my bizzaro dream – did that stimulate a hormonal release and set the flow and pain back into motion, and with it, the nausea?

I wonder if it was all of the above.

I wonder if it was none of the above, and just that bastard george saying It’s Time…

Either way, now I have taken another half of a Tylenol 3 and 400mg Advil gel-caps.

As I wait for the meds to kick in, my stomach has started growling to let me know ooops, you took the meds on an empty stomach!

Wonderful. Please don’t let me also get a stomach ache. I’m gonna go eat something right now.

Day 2 in the Underworld

Yesterday I consumed over 1,600mg of Advil gel-caps and I think a total of 2 Tylenol 3. I sometimes forget.

…counts remaining pills…

Yeah, that’s correct.

Today I have taken a total of 2 Tylenol 3 and I have consumed 1,000mg of Advil gel-caps.

*** TMI ALERT ***


My day started at a 7 on the Mankoski pain scale and when I sat up in bed, blood just gushed forth. I am so glad that I wore my super giant fabric pad to bed last night. When I got to the bathroom, I was amazed at how soaked the pad was in just that instant. When I had cleaned myself up and got up to flush the toilet, I was amazed to see freshly clotted blood on the lid of the toilet behind me. I tried to wipe it up with a quick motion, but it still smeared. Shock set in at that point, I swear. I can only handle so much blood.
My husband came home from the gym about that time, and I emerged from the bathroom, wide-eyed, and told him all about it, the poor thing.

He takes it in stride, I think. Poor guy has been seeing me in pain and with abnormal periods for the last ten years, now. Hopefully he’s used to the TMI. We’ve both seen each other through surgeries and worse, anyway. We’re young veterans, heh.

In other news, I forgot to take my supplements so far today. It’s been hard, since yesterday and today I have suffered moderate nausea and low appetite.
Last night, my husband brought home sugar-free, dairy-free Coconut Bliss ice cream, and I ate that for dinner, heh.

I noticed that when I’m bedridden, I’m pretty much on a cereal diet, or a diet similar to one who has the flu. Sometimes there’s a load of comfort food / junk food thrown in, but not always.

Today I got so nauseous that I had to stop reading my homework, and I could not look at the computer for very long. I’d type something in chat and then look away for minutes. Still, I forced myself to make some lunch around 2:30pm or so. I cooked up some chicken and made a ‘Thai’ broth; a cup of chicken broth with half a can of coconut milk, 1tbsp chili paste, 2tbsp fish sauce, and some other seasonings. I added broccoli and mushrooms, onions and garlic, and some baked chicken. I put it all over some Basmati rice. It was pretty good. Needs to be spicier next time, and less salty.

After lunch, I read some more homework for a bit, then took a shower. The bleeding usually abates when I spend time in the shower or bath. Or at least it used to. For the last several menstrual cycles, this has not been the case. It’s more like a scene out of Stephen King’s “Carrie”.

Oh and I’m still having weird dreams and nightmares. Last night I had a doozy – an actual out of body experience from sleep state. It was actually kind of neat, though.

Tonight my husband has a dinner engagement that he’s been looking forward to me attending with him, but I have to pass. I don’t want to be center of attention when the cramps start back up again. I don’t feel like being out in public with this much bleeding going on. I don’t use tampons because I’ve always been prone to yeast infections and urinary tract infections, and on top of it, I have a short vagina and a retroverted uterus, so things hurt when they’re put into the canal. And anyway, I bleed right through a damned tampon. So in case anyone wanted to suggest that in order to get me out of the house, you can forget about it. ;)
I feel bad, but at the same time, I’d rather not move around much and make the pain worse. Even getting out of bed to make lunch earlier set off a new round of cramps, and I had taken 400mg Advil. I should have taken twice that, but I knew I was already at the 1,000mg mark for the day, so I backed off until after I got out of the shower, when I took a half a Tylenol 3 in order to make sure there is constant overlap in my medication dosing. Just don’t wanna chance getting up to 7 or 8 on the pain scale again.

The past two days have been sunny and in the 70s outside, and I have not seen any of it. This time around, I don’t even care.