My world ended in 2012

I have been away for six months. The reason is that my husband had a physical affair which took me two months to prove, but once I did prove the affair, I was genuinely surprised that it WASN’T all in my head. I never thought he was capable of such betrayal from a person I spent TWELVE YEARS with. I was a complete basket case for three months, attempting suicide multiple times, and ending up in hospital for a week.

The good thing in all of this, as it relates to this journal, is that I was forcibly medicated with Gabapentin (Neurontin) as a mood stabiliser.

Gabapentin was recommended to me by my surgeon back in 2010, but I was too afraid to take it because of the listed side effects. I always hit into the rare category of side effects on any medication.
Now, being told in hospital that I would not be released unless I took medication, I had to give it a try. They started me out on a very low dose – 300mg – and I got head, arm and hand tremors. So they reduced it to 200mg and my mood improved fantastically.

What I also found out is that the neuropathy and severe pain were reduced to the point that I WAS NOT bedridden for the next FOUR MONTHS!!!

Last month’s cycle had me bedridden for one day, and this month’s cycle is hurting me enough that, had I gone in to work today, I’d have come home early due to the pain. Thankfully, today is Martin Luther King, Jr. Day, so I did not have to work. Hopefully by tomorrow, the pain will have abated again.

The bleeding is still heavy every cycle – that has not changed. But going from 3-4 days bedridden down to 0-1 day is a huge, positive change.

The Gabapentin has also helped me with chemical sensitivity – I don’t know how but it has. The nerve channels are blocked in the brain and the message that says, “I’M DYING” from the pain and from scented products is no longer getting delivered. The threat level has been reduced to, “Oh, that’s unpleasant.”

So I am thankful that I am on Gabapentin, now, but holy shit, what a path to travel to begin taking it.

I’m still not out of the woods, emotionally after the affair. There is no reconciliation – he declared he was in love with this woman, WHOM I USED TO BABYSIT FOR, and he said horrible things to me. One of the things he said with bitterness is that I have a need to continually let people know that I’m in pain, whether emotional or physical. I told him that my endometriosis blog exists for the very reason of letting people know I’m in pain, because talking about pelvic pain is still taboo, and people like me are putting a face to it. He told me he didn’t like that. He told me he couldn’t care for me anymore. He told me he didn’t love me anymore. And then he went back to HER, so I kicked him out of the house. He came back almost a month later to officially move all his crap out of the house, and he tried to take the bed, the couch, the dishwasher, the toaster and the microwave with him!!!! I forbade him to clean me out and threatened to call the police. I then hired a lawyer. He is the one who filed for divorce. The proceedings cannot happen quickly enough, but I want to make sure I’m not getting screwed. I cannot trust this man to be honest about *anything*, which is why I’ve hired a lawyer to check all paperwork he sends and all paperwork I have to fill out to get back to his paralegals.

It took me roughly five months to even accept that he was in his right mind, that he was capable of hiding so much of his sinister life from me. But then I found a thumb-drive with a bunch of his files on it, and it included letters and mix-tapes he sent to ANOTHER woman back in 2009. This appears to have been an emotional affair, but it lasted TWO YEARS. The affair began three months BEFORE our honeymoon…so only three months into our marriage. We’d been together for 8 years before we got married, but according to some of my guy friends, the very act of getting married scarred him or something, and he immediately regretted the committal, despite already being with me for 8 years.

This is why I have not posted to my blog in so long. I don’t know how often I will post in the coming months. My endo is fairly well-managed for the time being, but my emotional state is still shot.

The state of my insurance is up in the air – I don’t know how much longer I’m covered under his insurance policy, and my workplace only offers Kaiser insurance, which is a crappy HMO insurance. I’ve rationed the last of my Tylenol 3 for the past six months; I haven’t had ANY in five months – but I finally relented and took a half a pill today.

So much change. I want 2013 to bring me peace and happiness. I want to start healing both emotionally and physically. I write these things with the full knowledge that I also wish I just didn’t have to breathe, anymore. I’m so emotionally exhausted.

Update on my health

Let’s start with a review:

My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.

My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.

I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.

In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.

Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.

Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.

On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.

On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.

Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.

So the ovarian cyst took a back seat to a new health condition; asthma.

I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.

The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.

My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…

In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”

Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.

For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).

So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.

What I got instead was really bad news; an endometrioma does not reabsorb or go away.

Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.

An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.

I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.

We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.

My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.

I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.

So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.

Pre-op update

Monday, December 6: intermittent stabby low uterine/bladder pain – late afternoon. I had consumed caffinated tea at lunch time.

Tuesday, December 7: sharp shooting uterine pain. I doubled over twice, took 600mg ibuprofen about 2:30pm. This was after having consumed caffinated tea less than an hour earlier.

Thursday, December 9: Visit to local family doctor to get peace of mind on the heart murmur that I was born with. I was told it’s barely detectable. I passed a cursory health check and she wrote me a note clearing me for surgery in case I needed the note.

Friday, December 10: Mercury went retrograde. UCSF anesthesiology failed to call me like they had planned, to go over surgery details.

Saturday, December 11: all-day teacher seminar. One of the instructors locked her keys in her car. I chose to call my auto insurance to get the keys out, since she said her husband always has handled the insurance stuff, hence she didn’t know it. The benefit to me waiting for a road service dude was that I didn’t have to sit in a room with 65 women and men wearing toxic scents. Well, for the first hour, anyway. Good thing I’d chosen my seat next to the door before everyone else had arrived.
Got home from the seminar, ate dinner, went to bed.

Sunday, December 12: Attended the (Charles) Dickens Christmas Fair with husband – met up with friends there. Pelvic pain and low back pain hit after walking around for 4 hours – I took 600mg Ibuprofen when I went to bed.

Monday, December 13: saw my shrink, discussed fears of surgery. She donated her old shower stool to me from when she’d had surgery (she has Crohn’s Disease). Husband got home from work that evening and informed me that there would be layoffs on Tuesday. He’s survived four or more rounds of layoffs over the last couple of years, but neither of us were optimistic about this one.

Today, Tuesday, December 14: Husband’s work laid him off. Spent much of the day crying. Had to come home from work at 2:30pm because I wasn’t coping. Husband arrived home shortly after me. I had shots of booze waiting for us. He drank two shots of fine whisky, I drank a shot of rum. We spent the afternoon talking about everything financial as related to the surgery. He’s got 4 months severance and health benefits, so he thinks we’ll be alright. He’s got money in checking and savings. I have nothing – I never have anything – I don’t make shit for pay. It all goes to two credit card bills, renter’s insurance, car insurance, earthquake insurance, special-needs groceries, and Internet access.

I spent this evening cleaning the bedroom, as I was scheduled to do before my surgery. We also went grocery shopping. My husband was invited to a friend’s house to drink – I was invited too, but declined because the nesting effect is so strong right now before surgery. And well, I’m not supposed to be drinking alcohol, especially so close to surgery, anyway.

Tomorrow is my last day at work for four to six weeks. I am taking the day before surgery off work as a mental health and preparedness day.

I don’t recall if I went into details before my last surgery – about the emotional aspect of having surgery. There’s a lot of normal irrational fear of dying, fear of something going wrong, fear of nothing being found. My added irrational stress is that we’ve just entered Mercury retrograde in Capricorn on a waxing Moon in Taurus. Also, with the surgery being a week before christmas, if anything goes wrong, my husband is left to mourn every christmas season.
Rationally, scheduling the surgery at this time works out best, because we both have the time off work (holiday shutdown), and because the deductible has already been met, so out-of-pocket cost is about $300 (and it doesn’t roll over to the next year). The surgery works best right now especially, since we don’t know what kind of insurance we’ll have after this. So the timing is shitty, but at the same time for the best.

I just wish I could stop getting myself worked up to near-panic mode.

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.

Day 2 in the Underworld – medicinal experimentation

Yesterday was Day 1. George was a day late. I suspect he was a day late because I went swimming on Saturday and also drank two Sangrias. The swimming was fun, I treaded water and moved my arms back and forth a lot to get in an upper body workout. We were at our friend’s apartment that day.

Sunday morning, I began spotting, and it was dark brown with clots already present.

At Noon Sunday, I attended a free Alexander Technique pain management class through my local dispensary. I intend to go every Sunday. The instructor helps train us to make better choices with the way we move our bodies relative to our pain issues. Yesterday there were three of us in the class.

After that class, which lasts an hour, my husband took me and our friend G to the movie theatre to see Inception. The movie was a nice little mindtwister, I liked it. After the movie, I used the toilet, and discovered a greyish mass in the dark brown and maroon blood clots when I wiped myself.
GREY! Like I’d see on my surgery photos of what colour the endometriosis is INSIDE of me! I was not okay with this!

Twelve minutes ago, I ingested a zero sized veggie cap filled with medical grade cannabidiol. The dispensary had them in 00 capsules, but I thought that since I’m already so sensitive to everything on the planet, I should try a 0, instead. So here we are, Waiting For It.

Twenty-three minutes have passed and I am now feeling a bit mentally cloudy, and I am burping up the taste of cannabis. I’ve always hated the taste and smell of this stuff.
The pain is still with me and has been hovering at about a 7 on the pain scale, with sharp twinges on the left ovary shooting me up to 8.5 on the pain scale every so often.

Thirty minutes in, and I’m feeling a bit nauseous. My stomach is gurgling a lot and I’m still burping up the icky taste.
I am drinking Hobee’s Cinnamon Orange tea, which contains black tea, orange peel, cloves, rose hips, and oddly, no cinnamon.

Forty-six minutes in, and I’m getting sharp uterine pains which radiate to my lower back. I don’t feel blitzed on the stuff like I would had I smoked it, but I am still waiting for pain relief. I am bleeding heavily today, and have already bled through a thick fabric pad to my underwear.

I am still sick and coughing up thick green mucous in the morning. My husband entered the bedroom after his morning shower and I began gagging on the scent of his shampoo again. He got all offended as he always does when I told him his shampoo is killing me. I told him it’s worse for me right now because not only am I on my period, I also have an upper respiratory tract infection going on, so my sense of smell is heightened, and along with that my chemical sensitivities. He promised tomorrow morning to use the unscented shampoo I bought weeks ago. I think he’s enjoyed not having my chemically sensitive self around while I’ve been at school. I spent all of last week in a motel, and I’ve been staying in a motel on and off for six weeks, so he’s not had to worry about chemicals and fragrances. I shocked him back to reality this morning.
We think we traced the source of the illness – the friend I suspected (M) says she suspects our other friend (P). The timing makes sense – we were both hanging out with P on Thursday, July 15th. M and her husband had given me and P a ride. That night, P had a cough. Then on Friday, M & P hung out again. M said P looked really bad by then. By Saturday, M was sick, and P had lost her voice, but still came out to another event – a friend’s birthday – which I also attended.
P showed up again for the AIDS Walk on Sunday, July 18th; we gave her a ride and hung out all day with her. M also showed up for the AIDS Walk. While P was not coughing so much, M was full on sick by now, coughing a lot.
By 7pm that night, I developed a cough. Four days later, I sounded like a barking sea lion in the evenings and mornings, and that’s where it is even today, another four days after that. My ears have been plugging up and my eyes have wanted to stick shut, they’ve been so gooey. My friend M says I have perhaps another week before I start to feel better, and her husband also caught the illness and has a full blown ear infection, now. UGH.
Despite all this, my husband keeps insisting on kissing on me, because he’s missed me so much. I warned him, and he doesn’t care. Boys.

We are at the hour mark now since I ingested the cannabis. As long as I don’t move around, the pain is about at a 4.5 at the moment. I am sitting with one leg crossed under the other on a hard wooden chair. I am uncomfortable and the foot tucked under my leg is falling asleep. So I will have to move. Let’s see if I can relocate to the bedroom and what that does to the pain level.

Okay, that was about 20 minutes of moving supplies and myself to the new location, from the kitchen table to the bed. I had to make the bed, set up the wooden bed desk, unplug and move the laptop to the beddesk, plug it back in, and move my homework 3-ring binders and supplies to the bed so that I can attempt some homework today.
At first, while doing all this, I noticed that there was a spike in pain, but I was happily dissociated from it. I could tell there was tightening in the pelvic region, down through my hips. I could feel a burning sensation, but it didn’t hurt. However, after nearly 20 minutes of movement, the pain screamed through the medication, and now here I am, sitting on the bed with a heating pad on my pelvis and a heating pad on my lower back, doing my breathing exercises.
All the movement required to transport things to the bedroom also kicked up the effects of the medication, and now I am even more fuzzy-headed than I was before. I think I may need to sleep, soon. Not moving is in my best interest.

My review of the edible cannabis so far is that although it takes an hour to kick in, I think it might be a viable alternative to the Tylenol 3, if I remember that I still should stay home from work and force bed rest. I accept the fact that there is nothing on the market that will both alleviate my pain and keep me alert and sober.

It’s been nearly an hour now since I moved location from kitchen to bedroom, and the sharp pains are still with me, dammit. I should not have poked the hornet’s nest. I am considering taking half a Tylenol 3 and some Ibuprofen at this point. The pain is at 7.5 on the pain scale, and burning.

Just over an hour since moving location, and two hours since I ingested the cannabidiol. I sat up instead of reclining back, and that helped the pain go down momentarily, but now it’s back again. The pain is still burning throughout the uterus and radiating to the lower back. Still 7.5 on the pain scale. The heating pads are not hot enough. I am going to rewarm them and also ingest 600mg ibuprofen and half a Tylenol 3.

This concludes today’s medicinal experiment.

Results: recommended alternative to Tylenol 3, as long as I do not move around. Experiment needs to be repeated when I have the emotional strength to try it again. Right now however, I have reached my emotional and physical breaking point with the pain, and I feel that I need the codeine, acetaminophen and ibuprofen cocktail.

4:52pm Update:
About four hours ago, I took a half a Tylenol 3 and 600mg of Ibuprofen, and I did that just over two hours after taking a dose of cannabidiol.

I slept for two hours.

Roughly 45 minutes ago, I took a second dose of the Tylenol 3 – only half a pill, because the pain started ramping up again.
Just over the half-hour mark, I was suddenly supremely stoned. Holy shit. I’m never this freaking high on one half of a Tylenol 3. I know this is the remnants of the cannabidiol, because of the way the high feels. I feel like I just keep ramping up and up, I feel like I’m being launched into outer space.

I uh… I’m gonna go lay down again.

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. :(

Current treatments

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!).

Randomness

Today I started one day early. I woke with mild, annoying pelvic cramps, but they faded by late morning.

I was fine til just after 1pm when I was startled to find bright red blood during a trip to the bathroom. Soon after that, mild cramping began again. I took 600mg Ibuprofen to stop the cramps from getting worse, and it worked! Wheee!

Today I was able to accomplish the following:

  • 4 loads of blankets – washed and dried
  • Dishwasher was run
  • Wooden bed desk was washed again (cat peed on it awhile back and I’ve been washing the sucker repeatedly with Nature’s Miracle, Seventh Generation Wipes, Anti-Icky-Poo®, and more wipes – I think I am finally satisfied that it is no longer contaminated. Talk about OCD and germ/filth phobia!)
  • More Montessori homework accomplished
  • Bathtub scrubbed with Borax and hot water
  • Cat puke scrubbed from runner by front door
  • Cat litter exchanged (I accidentally bought the scented version and suffered the chemically sensitive consequences)
  • Back of photo album soaked in Anti-Icky-Poo® – this didn’t work out so well – the back of the album held up perfectly, but the stench and filmy residue are still there. There are two or three photo albums that the cat peed on in recent months. They’ll just have to be replaced.
  • Blankets folded and put away
  • Bed stripped and new sheets/blankets/pillow cases applied

 

That is a whole HELL of A LOT of stuff to be physically fit and able to do on my first day of my period, let me tell you!

Sometimes it just goes like that. I’ve not been doing anything differently – I still ate a lot of chocolate right before my period. I still ate lots of cow and goat cheese. I still drank lots of caffeinated coffee and tea with lots of sugar.

I did see my acupuncturist on June 24th, and on June 26th, I got a massage from my friend who is now a licensed masseuse. Even so, given my decades-long history with this illness, I don’t think acupuncture and massage are what allowed my cramps to be minimal today. Sorry gals. I truly think my illness behaves as it wants to behave, when it wants to.

On June 20, I noticed that I’d become lax in taking my calcium/magnesium pills, as well as my evening primrose oil pills. I noted the constant back and joint pain I was in, and said I’d resume my supplements. Within 48 hours of writing that, I went out and bought a new bottle of calcium/magnesium, and began taking it twice a day with a Vitamin D3 pill for better absorption, and I resumed my evening primrose oil pills along with the Vitamin C and zinc and other supplements I take.
The back and joint pain eased up immediately and profoundly!

As I got closer to menstruation, my mid back began tightening up, as it always does. This puts strain on the lower back, and then it becomes hard to stand up straight, or even sit up straight, for that matter. My massage was great on Saturday and helped loosen the back, but I messed it all up later that night by wearing a corset too tight, and my back went into spasm.
For the last three days since then, my back has alternated between being fine and wanting to lock up from the mid point down, because it’s going into protective mode like it always does every month before I menstruate.

So today the back pain was moderate. I took 600mg of Ibuprofen tonight when I got out of the shower. As I lay there on the newly made bed to cool down after my hot shower, my mid back began to spasm again. It was more of a twitch but a thickening of the muscles, definitely. Not the charlie horse type back pain I was in on Saturday by a long shot, but I could tell my back is definitely out of sorts.
(fun fact about me: hot showers, hot baths, hot tubs, hot pools – it has to be hot – it’s the best thing next to sex).

Oh – today is the first day I was able to get through the day without the following:

  • Coffee
  • Caffeinated tea
  • Raw sugar to sweeten anything
  • Cow or goat cheese

 

It’s not to say I didn’t suffer – it was a difficult day! I did eat two protein bars which contain chocolate liquor (but no sugar!), but I did not directly eat chocolate candies today. The two bars I can stomach the best are Brownie Crunch and White Chocolate Chip, though they do leave a bad aftertaste – probably because of the Malitol. I eat these things not to lose weight but because they’re the only gluten free protein bars that do anything to keep my energy up and stave off hunger for a bit when I’m at work and my only moment to catch a break is during the kids’ lunch hour. I used to eat Belgian Chocolate Organic Food Bars like nobody’s business, but the stores near me stopped selling the chocolate ones. Nowadays I eat almost as many BumbleBars as I do ThinkThin bars, but the BumbleBars don’t keep my energy up or my appetite at bay long enough.

Before I forget, I have been having a lot of strange dreams, lately. I don’t know if it’s the full moon (it was full on Saturday, June 26) or what, but the dreams are crazy.
…or not… I just looked up my dream about having lice the size of crickets in my hair, and this was the translation I got:

To see lice in your dream, signifies frustrations, distress and feelings of guilt. You may also be feeling emotionally or physically unclean. Alternatively, the lice my represent a person, situation, or relationship that you want to distance yourself from. You may be feeling used or taken advantage of.” DreamMoods.com

Fascinating! I was feeling used and taken advantage of!

Alas, I couldn’t get any insight into my dream about my dad’s right leg having to be amputated – the dream site only discusses the meaning behind the dreamer having her own limbs amputated.

*shiver* at least the lice thing is sussed out. When I woke this morning, I decided I would not continue to be angry with the Chi Nei Tsang lady, and I would not continue to feel taken advantage of by her. I put it right by taking matters into my own hands and ordering the supplements I need. I will do my own cleanses from now on if I deem those detox supplements to be of benefit again. This will only be my second time doing the cleanse, so we’ll see how it goes.

Alrighty, I’ve taken a total of 1,200mg Ibuprofen today and the pelvic cramps were quite minimal (I’d say a 2-3 on the pain scale. Right now is the first time all day that the nerves have begun to start their little dance down my inner thighs, so I’m just gonna high-tail it into bed and hope I wake to another minimal pain day tomorrow.

I really really wanna do a Steph’s Mythical Underworld photo shoot to illustrate from my mind’s eye my descent into hell each month. Even though I’m in minimal pain, I’m still at the gates to the Underworld. It’s not pessimism by any means. I know what I mean and that’s all that matters. ;)

Ooo – another thing before I forget. A few things…

Tonight I tried pesto instead of cream sauce and the result is that I have indigestion and I’m burping a lot. What’s in the pesto? It’s Trader Joe’s brand and it contains basil, sunflower oil, potatoes, olive oil, grana padano cheese (pasteurized cow’s milk, salt, rennet (animal), egg proteins), pecorino romano cheese (pasteurized sheep’s milk, salt, rennet (animal)), cashews, salt, pine nuts, lactic acid, garlic.

Well dammit, it could be the potatoes or the egg proteins or the cow’s milk or the sheep’s milk. Since I have a renewed war against me courtesy nightshades, which I thought I outgrew in childhood, I’m going to blame the potatoes and the egg proteins for the indigestion and burping. How ’bout that. Glad I only got the 6oz jar.

Another item to mention – I’m trying to consciously correct my gait, my posturing while standing and sitting, and how I move my body when bending forward for anything. I’m trying to stabilise my core region in the hopes of easing up some of the pelvic pain I suffer. I really should be back in the gym – I haven’t gone in well over a month now.

I thought there was one more thing but it’s gone. Good night!

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!

zenaideinthrees

 
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?

Symptom tracking

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.