Pain, fun, allergic reactions and trapped nerves

I tried to go back to work on Thursday, September 16, but the Last Gasp happeed two hours into my workday and so I took a whole Tylenol 3 and came home. Thankfully, by Thursday night, that was the end of the major pain and bleeding.

I went to work on Friday and was able to complete a full day of work – the first all week. I never need this much time off this job for the pain, which tells me either the endo really is getting worse, or I’m becoming a wuss to the pain after enduring it for 25 years. I worked a total of 10 hours that week. Ugh.

Friday was not only my first day back to work, it was also my birthday. After work, my husband took me to a very nice sushi dinner, where I stuffed myself until it hurt, heh. I don’t think we went out that night – I was still too tired from just having spent a week bedridden. That’s how it goes.

Saturday, September 18, set the clock! Go out and have fun til the next endometriosis attack! We went to a nightclub down in Menlo Park to support the scene down there. I didn’t really have a good time, but we did get a nice picture taken of us:

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On Sunday, we joined up with a fellow birthday girl for her annual Ice Cream Crawl, which took place in Oakland and in Berkeley. Around stop #6, I decided to eat sorbet instead of ice cream, which had given me a tummy ache, no matter how much lactaid I had ingested. The sorbet was raspberry chocolate flavour. To my dismay, it was full of raspberry seeds. I shared the sorbet with people in our group, and we all winced at how seedy the sorbet was.

Within twenty minutes, my throat began to get dry, then swell up.
Great.

So now I’m allergic to raspberry seeds? Wonderful. It’s in the same salicylate family with peach skins, grape skins, apple skins, apricots – all the stuff that also hates me either orally or intestinally.

I took a children’s benadryl but it did nothing, so I took a adult dose of benadryl on top of it – 36mg total. This of course made me a zombie, and so my husband ended our Ice Cream Crawl and took us home for the day. The swelling did not abate all day and all night, but I refused to go to E.R., because the last time I did, they told me they could not visualise the swelling, so it must just be me having a panic attack. To which I’d replied, “I know what a fucking panic attack feels like, and this is not it.”

I get the same throat swelling when I eat eel. Actually it’s the uvula that swells up. Same thing happened with the raspberry seeds, only not as horrible as it does with eel, thank [insert deity here].

I refused to go to E.R. because I cannot afford further debt with them – still haven’t paid off the June debt I incurred with another oral allergy attack. And I refused to use my epi-pen because you HAVE to go to E.R. if you use it. So I was kinda stuck. I knew I wasn’t gonna die, or at least I hoped I wouldn’t die choking on my tongue.

I made it through the night and the swelling went down by morning.

What a sucky end to my birthday weekend, though.

All through this whole time, I was still dealing with having to be on muscle relaxers for the trapped nerve in my shoulder. So I was quite the grump.

Monday, September 20, while bicycling to my psychology appointment after work, I experienced pulling, stabbing pain in my right ovary. This is not a good thing to be going through while pedaling. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Ugh.
The pain went away, though. Thankfully. But I was not even a full three days into my new cycle when that pain hit. The endometrioma is doing bad things to me. :(

I was able to bicycle to work for most of last week. I even made it to the gym on Thursday, September 23, for the first time in 146 days. I did the 2lb hand weight workout exercises as prescribed by my trainer, and then I did 14 minutes on the elliptical machine.

The pain from the workout did not hit until Saturday, just in time to help my friends move in 85°F heat. I designated myself cleaning lady that day, because on top of the workout pain, I slept wrong again and the trapped nerve issue in the neck/shoulder flared up real bad again.

On top of all of this, I’ve been bruising the hell out of my legs by running into the coffee table repeatedly, as well as the child-sized furniture at work. I have bumps and bruises and scrapes. I think the clumsiness is due to the muscle relaxers.

Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

It’s not fair that I can’t enjoy my 11 – 20 days between endometriosis pain cycles being totally free of any other sickness or pain.

It’s always something. :(

Quick catch-up

August 25: my husband and I were intimate.

August 26: Intermittent vaginal and pelvic pain all day – ever since intimacy the night before. This is common, since I am clinically diagnosed with Dyspaneuria, and it’s depressing.

August 31: I was scheduled to see the pain management psychologist at UCSF for our third visit, but I cancelled it because my husband’s health insurance carves out psychological treatment to some third party company called Magellan, and therefore my pain management clinics at UCSF are NOT covered. This has thoroughly pissed me off to no end, and I spent a large part of July and August in rage over it.

August 31 was also Day 8 – when mittelschmerz was supposed to hit, but I did not! I made no mention of pelvic or ovarian pain in this blog or on Facebook, or in my iCal endo notes. So this is awesome, I did not have mittelschmerz this time!

September 5: Right side ovarian stabbing pain, and low back pain – by evening. Took 600mg Advil and one half T3 at bedtime. We had driven down to Southern California (8 hours) to visit my husband’s ailing grandmother, and it was 95°F (35°C). Grandma refused to turn on the air conditioner or the fan because she was convinced it was already on. I swear we got heat exhaustion – both of us nearly passed out at varying points of the afternoon. I finally turned on the fan, and when my husband’s aunt showed up for her evening routine of caring for her mother, she switched the unit from fan to air conditioning.
I think the long drive down there is what set off the ovarian pain, or it could have been the mocha I had that morning (caffeine).

September 6: Continued right side ovarian stabbing pain all day. Took 1,200mg Advil and 1.5 T3 over the course of the day – but it did not mitigate the sharp stabbing pain. I was in pain during our second visit to grandma, and all the way home.

September 7: back to work – the ovarian pain was intermittent and mild throughout the day – possibly because I was back to moving around again, the pain was lessened?

In other news, the light cough I developed around August 18 left again by around September 2, and has returned again as of today. I’ve begun to wonder if it’s my newest nervous tick, or if I really have been getting virus after virus since July 18. The last two have been just a mild cough, though yesterday I ran a 99°F temp all morning. Ah, the wondering that I do. My husband and I talked about this on Monday – the so-called Twenty Questions I do to myself all the time with the endometriosis, and how it never really gets me anywhere. Sure, my questioning of my diet led me to discover the gluten, yeast and sulfite sensitivities, and it helped me to realise that cow’s milk, coffee and corn syrup set off immediate pelvic pain, but more often than not, it’s just too hard to really know what causes the pain, and yet I punish myself with this never-ending cycle of guilt.

Set the clock: about 21 days

My husband had woken me up about two hours after my last journal entry, to say he was going to take off to game night, unless I needed him to stay with me. I pleaded with him to stay. He said he would, but that he just didn’t know what to do if I was going to spend the rest of the day sleeping.
I told him that made me feel guilty – that he should just go to game, then.

It was clear he didn’t want to leave me alone, but he didn’t want to not be with his friends. It took me about 20 minutes or so to rouse myself out of my pain and pain medication stupor, but I told him “why don’t I just go with you to game, then?”

He liked that idea.

We collected my heating pads, my meds, the laptop in case I wanted to blog or attempt any homework, and two books; one for school and one for pleasure.

We got to our friend’s house and to my dismay, it smelled like smoke. I have a smoke allergy/chemical sensitivity. I was grouchy at my friend C – “WHY DID YOU SMOKE IN YOUR HOUSE.”
C replied, “Yeah but that was hours ago.”

I resigned to my fate – I was stuck here. My husband was already setting up the kitchen table for game night.

I was told where I could make myself comfortable, and I was told that a friend J, who lives in that house, was downstairs with a burst ovarian cyst. I didn’t want to disturb her unless I heard her crying out in pain, so I stayed upstairs in my own little world of pain.

I tried to heat up my heating pads, only to be reminded that they do not have a microwave in that house. I was directed to a big heating pad and was allowed to use that.

The offending smoker friend also helped set me up on his wireless network, but the moment I was set up, I was suddenly exhausted again and so I put the laptop away. I couldn’t even keep my eyes open long enough to hold conversation with anyone, watch TV, or read a book.

A third friend, also named J, who lives in that house, was also not feeling well. He sat in the living room on his laptop the entire night. He’s had spinal cord injury and had surgery after surgery to cauterise nerves. He thinks nerves are growing back or something, and is in a lot of pain again. I gave him one of my Tylenol 3 because he did not have any Norco on him.

At one point, around 8pm, the stabbing right side ovarian pain returned. I ended up on the floor, moaning in pain, rocking to and fro, with the heating pad. I was on all fours, then on my back, and then I settled into an arm chair w/ ottoman for the rest of the night. Their crazy cat October decided to be nice for once, and curled up on my tummy and purred all night. I was told she only likes women, and likes women best when they are in pain – that is the ONLY time that cat is nice.
Crazy cat.

So, the pain I had on Sunday lasted through until after 10pm, despite the fact that the bleeding had subsided again. My abs and ribs still felt bruised all that day.

I got home, showered, changed into my bedclothes, and went to bed.

Woke up Monday morning pain-free and got ready for my first day back to work. I was still spotting a little. I decided to try riding my bike to work, but as I went out the door to go to work, the pain set back in, and so I abandoned the bicycling idea and drove the measly one mile to work, instead. Glad I did. I needed my energy at work to move stuff around and help set up for the new school year.
I required a total of 800mg Advil to get through the day.

Got home and was very tired, but went on to my psychology appointment. I’m seeing a shrink again ever since I had a major depressive episode at the end of July. I’m still trying to figure out if it was JUST all the stress I have been under from school and finances, or if the Cannabidiol I tried for pain management set off an even worse episode of pre-existing stress and depression.
I evened out by August 18, but that was three weeks of pure hell from one menstrual cycle right up into this next menstrual cycle, which started on August 19. I am still on anti-anxiety meds (ativan).

I spent the rest of Monday evening hanging out with my husband, making and eating dinner, and watching TV. No homework got done on Monday.

Today is a new day – I start the clock so to speak – I have 21 days til next bedridden. Today I will go to work (not sure if driving or biking yet – it’s supposed to be in the 90s today so I guess biking would be better on the ozone), and when I get home, I will force myself to do some more homework.

In about 8 days, I will have Mittelschmerz – so the middle of next week – the first week the children are back to school. Hopefully it will go easy on me while I navigate my first week in the classroom.

One last thing – about last week sometime, I developed a cough again. So this is the second virus / cough since July 18 that I have caught. And now I’m going to enter a new school year with preschoolers. I expect to be sick continually in one form or another until December. I am pounding Vitamin C and Zinc and all the rest of my supplements, and will be back in the gym by no later than Thursday this week, once the heat wave cools down. Today is Day 2 of the first heat wave of the Northern California Summer.

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. :(

The ebb and flow of chronic pain continues…

Tuesday, June 8, 2010: spotting turned to flow again. 6.5 on the pain scale. I went to work anyway, and took half a Tylenol 3 and 600mg Ibuprofen. They were really short staffed, so I felt I had no choice but to be there.

Wednesday, June 9, 2010: spotting, intermittent cramps, right side pain.
To top things off, when I got home from work, my cat let me know she’d somehow gotten a bladder infection. She mewed for an hour until I realised she wasn’t trying to get into the bedroom. We usually ban the cats from the bedroom and they love to mew outside the door, cuz they love laying on our bed instead of on the couch or their own catbed. But somehow I came ’round to the idea that she was trying to tell me something, and she was. The poor thing.
I followed her around the house and quickly realised she was trying to find anywhere to pee, but the urine was just not coming out. She glanced up at the bathroom sink. I lifted her up and into it, and she squatted and a trickle came out. Oh my god. I about cried. My poor baby!

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I took her to the kitty emergency room and confirmed the diagnosis. She was put on antibiotics for a week, and now she’s all better. But boy, what a scare. She’s 14 years old, so any health problem could be a major one; it could mean her time has come. Cats in her family line live to a maximum of 17 years old, so she’s only got up to a few years left with me. Of probably 20-something cats that came from the matriarch from 1992 onwards, only three are still living, and two of them are in my household. The third lived with my Ma until last month – now he’s at the Humane Society, awaiting adoption, because my Ma cannot be trusted to properly care for animals.

Saturday, June 12, 2010: Pulled left upper arm/shoulder while stretching. Pain lasted all week through today.

Monday, June 14, 2010: I began commuting to a teacher training course. It’s a one-week course from 8am to 5pm, and it’s 40 miles from where I live. It takes an hour and ten minutes to get there, and an hour and a half to two hours to get home. I have the same unfortunate route that rush hour traffic takes – both ways. I sit in my go-kart of a car (the seats are low to the floor) for over two hours a day, and I sit in class for 8 hours each day. I’m not just at a desk though – I also have to get down on the floor, sitting either on my knees or cross-legged, stretching over a rug, like my teacher. It is the Montessori Way.
These positions did NOT help with my strained shoulder/back issue, and it certainly doesn’t help that I have congenital chondromalacia patella, so sitting on my knees hurts more than my back, it also makes my knees feel like they are on fire, because they get so inflamed.

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The other problem I ran into during the training week was that of scented people. I’m not used to having acute chemical sensitivity – it’s only been since September 2009 that this has plagued me so bad – only nine months – so I’m still figuring out how to cope.
Being in class with up to 30 women is a scary thing, because women tend to love scents, fragrances, perfumes. I picked a seat on the end of one of the long tables, and as it figured, one of the scented people in class chose to sit right next to me. The sore throat and headache set in within an hour.
The next day, I chose a seat across the room from this woman. The day after that, I was late to class, and the only open seat left in the room upon first glance was right next to that same woman, and another scented woman.

Not all oils, body sprays, soaps and perfumes have chemicals that are immediately toxic to me. These particular women, whatever they were wearing – the chemical makeup of their fragrance was too toxic for me, no matter how little or how much of the scent they had on them. So it’s not like they were doused in the stuff – on the contrary, it was probably a light tap or spray and most people probably wouldn’t even notice the scent. But the chemical(s) in their perfumes hates the hell out of me – the one with the compromised immune system. Go me.

After Day 1 of class, we were told to clean the tables and tidy up the room. I got stuck with table washing duty, and was handed a bottle of clorox surface cleaner. Of course, I choked and ran to escape the fumes. I had a talk with my teacher, and the cleaner was removed by the next day. She had the students use 409 cleaner, instead. It was a little better, but not vastly. I switched duties with another student and tidied up the curriculum materials on the shelves, instead.

You know, I got back into child care because I had lost my mind in the field of computer software. I had gone to school to be a teacher, not a technical support lackey.
However, the challenge of returning to the field of child care in my thirties has meant dealing with escalating health problems while trying to remain limber and agile, which are the basic requirements for being a preschool teacher.

I find myself in the past year wondering more and more often, “Did I really make a wise career choice for myself?”

Wanting to do something is one thing. My body and health cooperating with this is another thing entirely. But what else will I or can I do for a paycheck?? I’ve never been anything other than a child care provider or a clerk or a corporate office lackey of some sort.

Thursday, June 17, 2010: I was so sleep deprived by Day 4 of the training class that I decided to make a giant mug of caffeinated tea and take it with me to school. This helped me immensely with being able to stay alert and awake for the 8 hour class.
However, by early afternoon, I began experiencing left side pain and ovarian pain. It was intermittent throughout the day. It was Day 8 of the new cycle, so I wondered, is it the caffeine or is it Mittelschmerz? Or is it both?

I had gone for a brisk walk on my lunch hour twice during the week with a schoolmate I’d met during a teacher training course last Autumn, so I was really trying to exercise and work out the kinks in my back. It didn’t work. I was experiencing muscle tightness over my entire body, and at night while trying to sleep, I was getting charley horses in my calves and feet. I was sure I was drinking enough water during the day – I had been bringing two or more bottles of Smart Water (electrolyte water) with me to school each day.
I haven’t been so good at remembering to take my calcium pills – actually I forgot for the entire week. I was only taking Vitamin C and Zinc pills, and occasionally remembering my Evening Primrose Oil capsules. So perhaps I’m deficient in calcium and potassium, and perhaps I’m dehydrated despite what I think was good hydration. It certainly didn’t help my stress level during the week.

Friday, June 18, 2010: The last day of class. I was caffeinated that day, as well. I went out that night and drank some alcohol with my husband. I got buzzed, not drunk. I had a good time and my body felt more relaxed than it had in a week.

However, when I woke Saturday morning, the full body muscle strain was back, and the left side ovarian pain ramped up again. I dealt with the ovarian pain radiating up to my sides and down into the tops of my leg all day, just as I had on Thursday.

Today is more of the same with the ovarian pain. I have been on Ibuprofen and/or half Tylenol 3 pills for much of the week for the pain.
Thankfully, I have a followup appointment with Dr. Giudice this week to go over the MRI report. I can’t wait to get that out of the way.

Each day that passes leaves me wondering if I really should try out the Gabapentin or something similar.
I’ll talk to the doc on Wednesday.

Today, I woke up wanting to cry. I still have classwork to finish. I am expected to put in an appearance at work tomorrow, despite telling them I’d be taking the summer off for the training courses.
I have this week to finish the coursework, and a new class starts the following week. I have three classes back to back to back in July. I’m a tad stressed out over all of this. Each class is college-level intensive – it’s like 11 weeks condensed into one. On top of that, I ended up being partially responsible for taking photos for the class, because the two people who said they would totally flaked, and I panicked, knowing photos were needed, so I began snapping pictures of the demonstrations. Naturally, others saw this and began asking me to share my photos with them. Since we only have a week to assemble the binder, inclusive of 200-something photos from class demonstrations, I began to stress over just one more thing – not letting people down.

So I’m pretty depressed over just about everything right now.

I got the photo thing off my plate by yesterday – all the pix are uploaded and invites sent to classmates to pull down the photos from the web (Picasa). I have an order of printed photos waiting for me at Walgreens.

Now that I’ve made time for journaling, it has helped somewhat. Despite the pelvic pain and shoulder/neck strain, and despite the guilt over not being able to join my husband to help him celebrate with his dad on Father’s Day, I will now start my day and try to finish that damned 3-inch-thick class binder, and begin assembling the summer theme materials to take to work tomorrow.

I’m not working with children tomorrow – my head teacher decided to take off last week during tear-down week. The office already knew I was roped into a class which was pushed up a week. So both of us were gone and our outdoor classroom has not been set up with materials for the summer session. The head teacher is still supposedly AWOL, and the director asked me to come in a few days for a few hours each day to clean up and change out some materials in the outdoor class.
Of course, I said I’d do it, because I felt responsible for picking up for the head teacher’s supposedly unauthorised or poorly-timed absence.

I really really really wish the outdoor classroom head teacher had the freedom to teach in her own style, because the children really are learning and really are excited by her lesson plans. Alas, the parents and teachers and office administration are less than happy with this teacher, because she allows the children and the outdoor classroom to get absolutely filthy. And well, her personality is a lot like a friend of mine back in Michigan – most people just have no clue how to even deal with people like my head teacher and my friend; these two people are on a whole other plane of thought and reasoning. My friend self-diagnosed as Asperger’s Syndrome, and he’s also officially diagnosed as Paranoid Schizophrenic. So, taking his personality and communication style, and seeing how closely my head teacher matches him, I don’t want to diagnose her – rather, I go with how I’ve learned to interact with my friend and apply it to this teacher. Things have worked out for the most part pretty well between us. But I don’t think I can save her from the parents, the teachers or the administration. :(

So I am covering her ass for a few days, for a few hours each day this week, as the children begin summer school. I will see teachers and children, but I am not instructing the children. I am not taking in any pupils to the outdoor classroom. I’m merely there to use what I learned last week in class in trying to set out some materials for summer session.
This is of course a bit stressful in and of itself, but also a good learning experience, no?

Mittelschmerz already?!

Yesterday I was cleaning house when suddenly I doubled over in pain. I had to stop and sit down on the couch, and I sat there for the next 30-40 minutes trying to figure out if the pain was going to get worse or go away or what.

The pain finally subsided and I did not take any pain medication for it.

The pain was centered in the low uterus and affected my bladder, cervix and vagina. I had really slippery discharge all day, so I am convinced that this was ovulation, a couple of days earlier than normal.

This whole weekend has been a fun roll in the hay for my husband and I – my libido ON button is firmly activated AND there’s been no associated pain (dyspaneuria). This is awesome of course – since it means we have already surpassed our monthly average. Any time I can show my illness that I’m living life and having fun despite it all, I get really giddy. So…woot! to libido!

I had 10 good days!!

I’m so excited! I went TEN WHOLE DAYS WITHOUT PAIN!!!

I didn’t even feel mittelschmerz this month!

Here’s what I did with the healthy uptime:

March 28-31 – I got stuff done around the house, and went to work and ran errands – just the usual.

Thursday April 1 –       I saw Assemblage 23 in concert.

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Friday April 2 – I went dancing.

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Saturday April 3 – I went dancing again!

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Sunday April 4 – I rested, ate gluten-free pizza and watched the street flood from a rainstorm.

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Monday April 5 – I went dancing *again* but by this time, my knees were mad at me and my body in general was really starting to get fatigued.
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Tuesday April 6 – I didn’t have to work until 11am because it’s spring break week, and a lot of us aren’t on a full schedule this week. Our landlady was having our windows replaced, however, so the first part of my morning consisted of me walking around in a dust mask because it had become too hard to breathe with all the construction dust.
Health-wise, I realised I was beginning the downward slide – I began to feel bloated, and experienced mild, intermittent cramping. My knees continued to hurt from all the exercise I’ve been getting. ;)

 
Wednesday April 7 – I didn’t have to work, so I spent half the day hunting down dark humour comics to put on my website.

I then went to another concert – I saw Faith & The Muse and Sunshine Blind – two bands from the 1990s that I adored, and still do!

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Faith & The Muse
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I finally remembered to wear my knee braces, and that helped a bit with the knee pain, but within a couple of hours at the club, my lower back got angry with me. I popped a half of a Tylenol 3.
Halfway through the Faith & The Muse set, I was near tears from low back pain and mounting pelvic pain, but I stubbornly refused to walk off the floor.
During one of the brief exits by the band, I popped a whole Tylenol 3.
By the time Sunshine Blind took the stage as the special guest band, the drugs were starting to kick in, which allowed me to enjoy the show and dance a bit.
The dancing of course made the cramps angrier, and by the time we left the club, I was grunting in pain again.

This morning I woke groggy and went to work – another 11am start time, thankfully. I have been super tired for most of the day, and I have had intermittent stabbing uterine pain. I have not taken any more medication, but I will do so before bed.

One thing I realised that might have set off my pelvic pain is that since I’ve been going out to the clubs so much, I’ve been ordering Shirley Temples to drink. I wanted to have SOMETHING to drink because I have omitted alcohol from my diet – I’ve been dry for 98 days! :)
But that something has corn syrup in it. I knew that and drank it anyway. Either it’s just downtime again or the corn syrup in all those Shirley Temples over the past week have instigated early cramping. So now I go back to only water, or finding some other beverage to drink at the clubs. I learn from it and move on.

So that’s my update – overall it’s been awesome and my only regret is the poor choice of beverage with all my recent outings. I’m SO glad to have had a combination of good health and later starting hours at work to allow me to go out as often as I have been. :)

Oh! And my weight is down to 159lbs!

Day Eleven out of Nineteen and I’m dragging already

Today I feel severely tired. I had a rough day at work wherein the students were all spazzed out over ‘wacky hair day’ and the knowledge that they do not have school tomorrow (staff-only day scheduled). I talked til I was out of breath trying to regain control of the classroom on several occasions. I was in charge of the first/second grade classroom today, because the head teacher overslept and didn’t come in til almost 11am.

Still, before leaving work, I thought I’d still make it to the gym. I joined a gym in late January, then spent all of February sick as a dog, so March is the first time I’ve been able to make use of my gym membership. I have been three times, and was supposed to go again today. However, I got home from work and all I wanted to do was cry and go to bed.

I didn’t end up crying, but I did crash on the couch for about 40 minutes, and since waking, I’ve not recovered any energy.

My husband made me dinner, thankfully, but still it did not do anything for my fatigue. Now I must note that I’m really surprised by this – this level of fatigue, where I literally want to just fall down from standing position and start snoring – that is special only to menstrual fatigue. It happens to me a couple days before my period, and happens for up to a few days after my period. I have had no notable pelvic pain in the last couple of days, but I did have pain back on March 6, five days after I’d stopped spotting, and on March 8, on the day I would typically ovulate. What was weird about the pain on those days was that it was not ovarian, so I probably was not ovulating. It was really low on the uterus, and near or on the bladder. I seriously felt like I had a urinary tract infection on March 8, and I had to take 600mg of Ibuprofen gel caps at work to stave the pain.

This bone dragging fatigue – my eyes are drooping even as I type and my whole body feels so very weak – this alarms me and makes me think my period may be sooner than next Friday, March 19.
If my period is early, then I won’t have had 19 days between downtime cycles – I will have had less than three weeks between the bedridden times.

I mean, as it is, I ended my period, then got pain again five days later, then again a couple days after that. So I haven’t had consecutive pain-free days between cycles. And when you look at the calendar, you see that I stopped my period, I got some pain the week after, and then a week after that, I am already due for my period again. That’s not fair, is it?

Here’s hoping it was JUST the kids having wiped me out today.

Sick to endo to sick again

On December 5, I developed a mild cough. Two days later, I had the flu. I found out later from a doctor that it was likely H1N1.

A week after getting the flu, I fell ill with endometriosis pain and was bedridden for a few days. I was on a lot of Tylenol 3, which was good not only for the cramps, but also for managing the fever (acetaminophen) and the cough from flu (codeine is great for supressing coughs).

The moment I came off the Tylenol 3, the cough and flu-symptoms returned. And then my husband fell ill with the flu. And then my symptoms turned into a sinus infection. This was the week of December 20. By the end of that same week, I was experiencing Mittelschmerz.

I have all the flu stuff detailed on another journal here and here.

My husband and I began to feel better by December 29, and on NYE we were able to go hang with friends.
On Friday and Saturday (Jan 1 and Jan 2), I went out dancing with my husband, because we were screwed out of our vacation and because it’s the last dancing I’ll likely get to do before falling ill with endometriosis pain again…it’s due by January 7…which is two days before my husband’s birthday.

So I missed work on account of flu, then on account of endo pain right before Christmas/Winter break, and now I’m going to return to work and immediately miss more work on account of endo pain.
Good times. The fear of not having job security continues.

Pain status update

I tend to forget about journaling when I’m NOT in pain… I noticed that the last time I journaled here was 16 days ago.

Well! I am happy to report that for 10 straight days, from November 23 to December 3, I ranged from pain-free to low intermittent pain! Yay!
I must note that I’ve done nothing drastically different with my diet. This of course gets a yay and a boo, because I keep holding onto the idea that my diet is what exacerbates a lot of my pain. I’ve been eating chocolate, cheese, refined sugar, caffeine … all “forbidden foods” … and no pain resulted.

I did have about half a cup of champagne – maybe less – on November 28, and two days later, I experienced intermittent shooting pains in the front uterus/bladder region. However, that was also day 7 of the new cycle, when I ovulate, and will often experience mittelschmerz. So even consuming booze can’t likely be directly linked to causing pelvic pain in that instance.

This leaves me feeling that there’s nothing causing this good health aside from the endometriosis WANTING to behave. I had not embarked on any new medical treatments until December 3rd.
I’m getting as much exercise as I normally do. There’s no new medications or supplements in my diet, but I have been a bit more regular with taking evening primrose oil and niacin.

While I am ecstatic for having a nice run of pain-free living, I am absolutely furious because I cannot say for fact that I MADE myself pain-free via diet/excercise/medication/supplements/etc etc. It seems that it’s only because the bastard disease wants to behave right now.

But throughout those 10 straight pain-free/low pain days, I smiled, breathed and enjoyed each minute of healthful living.

On December 3, I went to a new acupuncturist. According to my calendar, I’ve not been to an acupuncturist since June 12, 2008. I had given up on acupuncture for awhile, because I didn’t feel the Chinese herbs were helping, and the Chinese male acupuncturist didn’t make an effort to try to see me regularly. This new acupuncturist is female, anglo redhead, and wrestled with endometriosis for years. I was referred to her via a friend. So I think I’m off to a better start this time around.

After my acupuncture session, my husband and I went to our friend’s house for dinner, and they were getting into the wine and whiskey (not together mind you, some had wine, some had whiskey!) I took a small sip of a nice whiskey, and I drank two shot-sized glasses of port with our friends.

The next day, on December 4, I experienced right side ovarian pain, which was stabbing intermittently throughout the day.
Today, I experienced (and am still experiencing) ovarian pain on BOTH sides. The feeling is of stabbing intermittently, with continually low dull pain in the ovaries, including the lower front uterus. Low back pain is also noted, and all day I have had moderate pain radiating down the outer hips to my outer thighs. There is occasional stabbing pain in my hips/thighs when I bend forward or sit.

Is it because I drank a small amount of alcohol Thursday night? Or is it just that my period is due in one week?

I’d like to note for the record, according to my calendar, that in 2008, I did not consume ANY alcohol for 77 straight days. Five days later, I ended up in the emergency room because my cramps were so bad that even I was scared.

So I’d like to officially NIX any idea that consuming alcohol recently is what brought on my cramps, and make the motion that my cramps have set in simply because It Is Time – I’m one week out, and this for my body is normal to be getting cramps.

The cramps in question this time around have been hovering at 4 – 5 on the pain scale.

Still, I’d like to give up cow’s milk-based cheese and ice cream for a few months straight and see if that has any effect. It’s the only cow’s milk-based food I still consume directly.
Indirectly, whey is in a lot of foods, and so I know I still consume cow’s milk indirectly on a regular basis. I’ll go with omitting the direct ingestion (cheese, ice cream), first. I rarely eat cow’s milk-based ice cream anymore anyway, so that should be easy enough.

I have a lot of pessimism in this – I firmly believe that any lack of pain is simply due to the illness behaving itself, and therefore the blame game on my part emotionally just really needs to stop already. I was born with this illness for cryin out loud. It has a mind of its own. I don’t think anything I do will influence it without adding side effects and/or consequences to the rest of my system.

This doesn’t mean of course that I’ll go out and get smashed, gorge myself on ice cream, and eat 50 pizzas. I still have allergies out the wazoo to contend with, and a desire for overall healthfulness in general.

I am so thankful for the 10 straight pain-free days I was able to have this month. I hope that once I emerge on the other side of the coming cycle, that my body can meet, if not exceed that record.

Oh – one more thing – I cannot remember if I told you where I’m at on the medication front. I spoke to my gynecologist by phone last week, and she expressed disappointment that I wanted yet another Tylenol 3 refill. The vicoprofen just wasn’t working out for me – I was getting dangerously depressed on the stuff after just a couple of doses during my period. I go through about 10 Tylenol 3 a month, which exhausts my 30-day supply in 3 months. So I call my gyn every 3 months. She told me she thought I was going to see a pain managment specialist. I told her I’d not been able to find one to see me in the evenings or on weekends, because as a teacher, I NEED to be at my job at my scheduled time Monday through Friday. She didn’t care for my answer. So She’s given me a deadline – no more refills after this one. Come February/March, I’m on my own, she’s done prescribing for me. Yet another doctor who thinks I’m drug seeking. This is totally common for women suffering with endometriosis to be treated in this fasion by their doctors, and it’s pathetic.

I told my gyn I had an appointment with an acupuncturist, but she didn’t count that as “pain management”. Many doctors still consider acupuncture as folk remedy. Whatever. I’m giving it another shot. I’ll of course also be contacting her pain management and surgeon recommendations.