I Will Not Suffer In Silence

Today the pain and bleeding have subsided. I have only had minor pain with the occasional stabbing in both ovaries and the uterus. I’m still constipated. I have not had any pain meds yet today.

I’m still sick with a cough and chest congestion. I have not taken any cough syrup for it yet today, because it has codeine in it, which is constipating. I’m just coughing the junk up. Maybe tonight I’ll take more cough syrup.

Today I had an appointment with the pain management shrink, so I checked our financial status to see where I should pull money for the co-pay and parking fees. This is when I got a huge shock; apparently the school decided to deposit two checks at the same time after having held onto them for a couple of weeks. Apparently I had budgeted the money, assumed the checks were cashed, and continued spending money from the account without looking. This is something I always do. I have created lists and lists. I have printed my account balances out. I have tried spreadsheets and checkbook registers….and STILL I do not keep a tight enough mental handle on my money. STILL it flies out the door unchecked.
This time around, I even went so far as to print out the bank statements nearly every week and set it on my husband’s desk so he could provide the ‘checks and balances’ - the oversight - in case I had failed.

Well, he didn’t look at the balances too closely, or didn’t care. Worse, he didn’t keep the printouts with my side margin maths. He thinks he just glanced at the stuff and threw it away. There goes the oversight!

So we are in the hole - the joint account is completely drained, with bouncing checks and overdraft fees. My personal bank account has less than $300 in it (I need at least $300 in order to not be fined each month for falling below balance).

And there’s my credit cards - both are maxed out; one is at $2K and the other is at $6K. Most of that damage happened in May, 2009 for the honeymoon, and the cards were finished off in May, 2010 when we went to Michigan. Payments on those cards are due in the next week.

So now I owe my own husband over $1,000, and I still owe my employer at least $100 for a hotel stay during summer school, and I still owe the training school $325 for the last class I took.

Then there’s the medical bills - I owe hundreds of dollars in co-pays for the MRI, the ultrasound and the Emergency Room visit I had because of a co-worker wearing Chanel perfume to work - who knew I’d go nearly anaphylactic?

The school costs and the credit cards are due ASAP. The medical bills can wait.

I have ongoing appointments with all kinds of medical professionals - acupuncture, the head of pain management, the pain management shrink, and massage. I can no longer afford any of this unless my husband hands me the cash on the spot.

I’m going to make yet another list for him tonight, because he said he will crunch numbers and see what he can offer me.
He’s already paying all of the rent, most of the groceries, and all of the bills. *sigh*

I am not scheduled to return to work til the end of August. I have so much homework that I NEED that time off, anyway.

The financial mess I’ve gotten us into has wrecked me emotionally. I thought I’d planned well enough to avoid this, and yet here we are. I cried at the pain management shrink today, but not about the finances. I cried about my illness necessitating all of these appointments. I skirted around the financial issue and focused on the quality of life issue. I said I just want to go back to ‘blissful ignorance’ and just stop trying to MANAGE this illness, when it just seems that there’s no managing it.
The truth is that I NEED to learn how to manage my stress and my pain, so I NEED these pain management clinics. I just think however that I can get what I NEED for FREE through the dispensaries, thanks to my Prop. 215 certification. So I’ll make out the list of services I need and see if I can get everything I need from the dispensaries, and sadly I will have to fire UCSF because it’s a huge financial drain.

In other news:
Today I am starting the kidney and liver detox diet. It lasts one month. I am not going to do the gallstone flush at the end of the month, because I do not believe it works. I do however still believe in the detox itself. Here are the details:

DETOX WEEK 1

Night before first day - Make kidney tea.
1 Tbs. Tea mix into 1 cup cold water in non-metal pot (enamel or glass)
Heat to boiling point (do not boil) and then turn down to simmer for 20 minutes. Leave out overnight. Can be made a few days at a time, extra to be refrigerated.
Warm (do not boil) before drinking.

Breakfast: (or at any time of day) Kidney Tea: Strain tea. Warm and drink one cup.

Supplements before meal: 2 clove capsules

Supplements with meal:
1 ginger
1 Uva Ursi

Lunch: Supplements before meal: 2 clove capsules

Supplements with meal: 1 ginger

Dinner: Supplements before meal: 2 clove capsules
7 wormwood capsules

Seven Vegetable Soup OR Parsley Tea 1 cup boiling water, steep a few tbs. chopped parsley for 3 minutes, strain & drink (or at any time of day)

Supplements with meal: 1 ginger
2 Uva Ursi

Before Bed: 3 tsp. Black walnut tincture in 1 cup of water

Make tea for following day if needed

Do not consume caffeine in any form (coffee, sodas, teas, chocolate) as it is counterproductive.

I forgot to make the tea so I’ll do that this afternoon. I forgot to take the 7 Vegetable Soup out of the freezer, so I just did that now and it should be ready for me by tomorrow night.

The pain and bleeding did not ramp up again until 2:27pm today.

I had gone to bed right after a shower last night, around 10:30pm.
It was the second night in a row that I’d gone into the bedroom for a moment and just fell asleep for the night.
I did not wake up until 11am today, and I was still very tired upon waking. I forced myself to eat some breakfast and stay awake. I decided to call my cousin back and chat for a bit, and also check in on the news feeds for endometriosis. I finally put a new article up on the main site.

I had spent the second day in a row at the kitchen table, because during this cycle, the pain has been mitigated best by sitting upright in a hard chair. Strange, but I’ve learned to go with it. I had just finished publishing my article, when I felt the familiar pain start to spread out in my pelvis. It feels hollow at first, then it’s like a melon-baller is being used on my uterus. At that point I stood up, and of course I knew what would come next… GUSH!
I went to the toilet, and I think I know what caused my latest round of pain and bleeding - I had to have a movement, and I’m constipated, so things were backing up and pushing all up on my uterus, fallopian tubes and ovaries. That is what caused the pain, I’m suspecting.

While I was in the bathroom, the neighbors next door decided they’d like to use the gas leaf blower and weed whacker…and of course my windows are open. I darted from the bathroom and closed the windows. That’s when the phone decided to start ringing. I ignored it.
Why does everything need to happen when I’m trying to take care of myself?
I nearly vomited from the strain and pain. I’ve been taking my calcium citrate pills but it’s not enough to fight the constipation caused by all the Tylenol 3.

Speaking of which, I have not had ANY pain medication since about 3am. The last thing I took was some codeine cough syrup.

Now that the pain has set back in, I just (2:53pm) popped a full Tylenol 3 while I wait for my unhealthy lunch of rice noodle Macaroni & Cheese to cook. I ate half a sesame seed/peanut butter/honey crepe from Trader Joe’s before consuming the medication.

Soon I will have to be bedridden again.

I spent half the day doing stuff for me, at the expense of getting homework done. Now I am in pain, so getting any homework done today will be a challenge. Enter GUILT.

Hm.

Since this is Day 4 of menstruation, and I had several hours’ break in my bleeding, perhaps this is the Last Gasp. Perhaps by tomorrow I’ll just be spotting and on to renewed health for a couple of weeks again.
I can hope.

The pain hit while I was watching and photographing other people’s presentations. I am the class photographer, so I felt I could not rest. I did stretches when I could. I did wide hip circles when I could. I ingested 600mg Advil gel-caps.

During the first presentation right after lunch, I was standing and photographing when I got dizzy. I regrouped. Then a few minutes later, my knees buckled. I steadied myself and lowered myself to the ground. My classmate, who also has endometriosis, was sitting on the floor nearby and rushed over to me, asking if I was alright. I told her I’d almost fallen and she said, “I know, I was ready to spot you.”
That’s when I finally acknowledged to myself, “yes, I really am in bad shape, and now other people can tell.” My face went red with embarrassment, even though no one was looking at me because I was in the back of the group watching the presentation. My classmate took my camera and told me she’d continue photographing for me.

The presentation finished, and that’s when one of the people in my presentation group came up to me and said she was leaving. She suffers from chronic migraines, and she also got her period this week, which has been the worst pain she’s been in, in a long time. She was on day three of killer cramps. I looked up at her all wrapped up in blankies and heating pads, with her sunglasses on because indoor lighting was too bright for her. I said, “I’m right behind you, I might go, too.”

Next thing I know, our team is being called to present the next lesson. I thought I had at least one more presentation before our group, so I called out to a member of my group, saying I was not ready, I need more time. Team member 1 went home already. Team member 2 came to me and asked if I was in pain, I told her yes. She told me that she and Team member 3 would go on without me and Team member 1, and that it is okay, they understand, and they will be fine up there together. I pleaded with her to ask for more time. She told me really, it’s OKAY, and gave me a genuine look that said, “just stay there, rest, it’s okay.”

I burst into tears.

The guilt! The failure! All that preparation! Would I get an incomplete? We abandoned our team mates!

Now other classmates were looking at me. Ugh. I slowly got up, knees still buckling, and staggered into the kitchen to cry alone.
And cry alone I did. I sobbed silently and sniffled a lot. I needed my medication but it was in the other room. I was not comfortable sitting or standing, and I did not want to lay down on the floor. I settled into a cafeteria chair.
I felt trapped. My legs were not working right. Everyone was watching the presentation. My endo buddy was photographing for me. I was alone. I was embarrassed for losing my cool and crying like this. I cried and cried.

When at last I felt I could compose myself, I slowly rose from the chair, and walked slowly out of the kitchen, through the presentation room, where another presentation was going on, and made my way to the public restroom.

After all that pain and suffering, I had nothing to show for it. No bleeding has started, yet.

This has happened to me often enough, but it never fails to make me that much more pissed off at my body. If I’m going to have that much pain, why can’t I already be on my period? Why do I have to have all that pain before my period, then go through the period on such continued pain?

It’s not fair!!!

I emerged from the restroom and went to the classroom, where I was finally able to take a half of a tylenol 3. I sat at my desk and cried some more. Eventually I slowly walked back out and watched the last presentation, then slowly helped my teammates clean up our presentation area, and rejoined the class for the closing presentations/goodbyes. One presentation entailed lighted candles to represent the constellations, while some smoopy song played which talked about how bright we are. I cried AGAIN.

OMG CAN THE PREMENSTRUAL HORMONES PLEASE STOP ALREADY!

I think my problem is that I have been stuck with these women for six weeks. Their pheremones have invaded and disrupted my hormonal system. Even worse, this week I had the migraine/cramp lady sitting on one side of me, and a heavily pregnant woman sitting on the other side of me!

Don’t TELL me that didn’t have anything to do with my pain and emotional state! Women’s bodies are creepy.

After class, a lot of classmates were concerned about me or morbidly curious, and i had to answer the same question probably 10 times. I’d even visually disturbed a male classmate, who said he would pray for my pain to ease up. I got teary eyed AGAIN and thanked him.

SOMEONE OR SOMETHING PLEASE KILL ME. Make it quick.

My endo buddy lugged all my coursework and backpack and shoulder bag down the flight of stairs after school, went and fetched my car, and loaded everything into the car for me.

I stopped off for take-away dinner on the way back to the motel, and now here i am, typing out my saga to you, with puffy, stinging eyes. I’m ready for a bath and bed, and it’s only 8pm.

This is the second bad pain day this week - Tuesday was also bad. Today was much worse than Tuesday. The shooting pains made me yelp out, and when the pain finally got so bad, it was an 8 on the pain scale.

Oh and the cold I’m fighting is also settling into my lungs. I’ll keep you posted on that, too.

Please, honestly, something - just quickly put me out of my misery. I’m so done with this. It’s not fair. I’m mad. I’m upset. I’m tired of this. It’s just not fair.

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

…counts remaining pills…

Yeah, that’s correct.

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

*** TMI ALERT ***

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

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

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

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

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

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

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

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

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

I had my little three-day pity party, and now I’m ready to formulate a new battle plan.

Friday night I hung out with my husband and our friends, and we had game night. I drank two vodka drinks that night. I got a buzz but did not get drunk. I ate a lot of chocolate covered espresso beans and cheese. I was in ’screw it’ mode with regards to my diet. I felt like nothing I do makes any difference - my body is going to continue to be diseased - so why not just live my life the way I want to, and eat the junk I want to eat?

Well, Saturday morning I found out why I can’t do that.

When I woke up, all my joints were aching, and I had a new round of pelvic pain going on, and my breasts were so tender that I wanted to cry. I knew the culprit was firstly all the caffeine and secondly, the booze. I know this because Tyler knows this I have direct experience with noting how my body reacts to caffeine and to alcohol.

However, the brain weasels were still invading en force on Saturday (yesterday).

I went to my friend for a massage (she is trained!) and had a lovely session with her. I started out wanting to cry my eyes out, and my voice was very shaky. I ended up with a lovely state of relaxation that carried me through the next five hours. Alas, the brain weasels are a strong lot.
However, as I was going out the door last night, a co-worker called and asked me if I’d like to share a hotel room with her for the next training class on July 5. I was confused as to the dates, and so she called her mom (who runs the school I work at).

Get this - I thought my next class was this coming week, but it’s not! It’s not until NEXT week! Hooray! I was soooo stressed out about getting all my homework done from the last class, and now I have another week to do it. My co-worker told me not to stress, that I actually have all summer to get my homework done. This jives with what two other co-workers have told me. But the teacher I had for this last class was telling everyone the homework was due June 21, and I was all stressed to hell that it was late already. So glad I have more time. And on top of it, now I have a room to share instead of footing the entire bill for a room myself. Commuting down to Sunnyvale had been quite a bitch last time. Getting a hotel room is much more preferable.

As I was saying, I was on my way out the door. I went with my husband and two friends to see Concrete Blonde’s 20th Anniversary Reunion concert last night (OMG it was so awesome!!), but I was still such a spaz that I felt I needed a drink. I would have taken a half a Tylenol 3 were it not for the fact that I’d left my medication in the car. So I drank to quell the brain weasels, instead. I only had one drink - Mount Gay rum with club soda and some lime. It was godawful but that’s the best the bartender could come up with outside of corn syrup-infested alternatives. I should have just had the rum neat. Ah well. It did its job in the end.

I wore a corset to the show last night, hoping it would stabilise my back, because I always get bad back pain when standing at concerts.

The corset didn’t help. So there I was, in moderate back pain by the middle of the show, and I didn’t have any meds on me, and I didn’t want to drink any more booze in case the back pain got worse, or even worse, in case the pelvic pain returned.

On the drive home from the concert, my mid back began to spasm. I laughed hysterically and kept saying, “at least it’s not pelvic pain, this is actually manageable!” I tore at the corset strings and ripped the thing off, and dug my hands into my back to try to work out the spasm. Things didn’t calm down until I got home and smooshed my back to a tennis ball to the wall and rolled on it to try to work the blood flow in the back.

A TMI note - I was intimate with my husband and right afterwards, the pelvic pain kicked up. I need to note this because I am clinically diagnosed with dyspaneuria, and now I’m ever aware of the cysts on my cervix thanks to the latest MRI report. There was a tiny bit of blood in the vaginal discharge after intimacy. The nerve pain began immediately - first a tiny tickle near my cervix, then fringing out slowly to a burning sensation inwards, radiating throughout my entire pelvis. I reached about a 4 on the pain scale, but I did not take meds because I’d had one rum drink earlier in the night.

Today I’m going to review the list of inflammatory foods, and resolve to cut out sugar and ALL dairy (including goat milk) from my diet. The Budwig diet however calls for yoghurt, so I dunno what to do with that, yet. Maybe I’ll make an exception and just have goat milk yoghurt in the diet and keep the restriction to no cow’s milk anything, no bottled goat milk, no cheese, etc.

The point to the new battle plan is that I want to try to stave the growth of the endometrioma on my left ovary.

Wish me luck. The last time I cut sugar out of my diet, I had an emotional meltdown from the withdrawals.

I don’t feel like I fully conveyed my sense of frustration and panic over my highly regular cycle throwing me for this much of a loop.

When my period is even a day late, I freak out, since it’s a trigger for me. I’ve been pregnant twice in my life, with the first time being at age 18. I have never gotten over the trauma from that first unwanted pregnancy - I always feel like I’ll be in big trouble, like my life will be over, like I’ve really screwed up this time, etc. The weight of this stress is enough to throw my shoulders and back out. I’m nearly to that point today, and I took a mental health day off work because of it.

I feel like I’m in limbo whenever my period is late. I go through each minute of each day knowing I should have been bedridden already. I’d already planned for the time off work. I’d already stocked up on groceries and tried to prep the house for my descent to the underworld. And then george is a no-show and I’m left biding my time, Waiting For It.
I’m in that special hell where I cannot exert myself too much because it causes pain…but I’m not in debilitating pain. And I’m super tired - I want to sleep all day and all night. And yet because there is no constant gnawing pain and/or bleeding going on, I feel like I’m expected to BE somewhere and DO something productive. But my body isn’t up for it. But my mind is restless. So the guilt sets in. I have video blogged about the guilt before (catch it here and here), but it’s so hard to LEARN the lesson and just be okay with whatever my cycle is doing - just roll with it.

I get so caught up in knowing where my uptime and downtime is, that if I end up with a little more uptime than expected, I freak out over it. I feel like something is seriously wrong. It’s like I’ve told myself I’m not allowed to go over 25 days between menstrual cycles - that if I do, it means I’ve messed up big time (see above-mentioned trigger).

Now, the last time my menstrual cycle did a huge change on me was 13 years ago, probably as I was settling in from a major life change - moving across country.

Now I’m edging up on the age of menopause, so I should expect that my menstrual cycle is going to start acting funny, and that this will last for years until I stop menstruating altogether.

But it’s not reassuring. I know I have an ovarian cyst, that I’m prone to the cysts, and that if the cysts grows bigger than 4cm, I have to consider cancer testing.

I have an MRI scheduled in two weeks, but I’m not reassured. I called the doctor but they have no openings today or tomorrow, the soonest I can get the MRI is next week, but I’ll be in Michigan.

So it’s the waiting game. I’m in Limbo, that special hell where I wait for either my period to show up or positive pregnancy test or the MRI to confirm Something Bad™.

This morning, I went out back of the house and tried a bit of tetris in the storage unit. It went well, but the exertion left me nauseous, dizzy, weak/trembling. Between that and the fact that my vaginal mucus FINALLY turned slightly pinkish this morning, that’s all I have to go on that george will be here soon.

Normally it’s nothing for me to lift and move a few things in the storage unit…but it’s 30 minutes later and I’m still shakey and nauseous. The nausea is from the damned ovarian cyst.

My cats caught sight of the cat carrier and luggage and made their way quickly to the closet. Now I keep hearing a scratching sound, but I don’t think it’s the cats. At least, it wasn’t when I last checked. Someone next door outside or someone upstairs from me is sweeping or brushing at something, I guess. But it’s driving me nuts because I’m already in a panic state. I turned on Internet radio to drown the brain weasels and the scratching noise. It’s helping a little.

In the meantime, the nerves have flared up in my legs - I’m getting nerve pain down my inner thighs and tops of my legs all the way to my calves. Usually the pain only goes to my knees. The radiating nerve pain is another sign of george.

…as I descend further into the underworld on my monthly journey of chronic pain.

Tuesday night, I was sure that the pain was ramping up, and that by Wednesday morning, I would be in severe pain. The only co-worker I could line up to sub for me said it would be best to let him know Tuesday night as opposed to early Wednesday morning. So after 11pm Tuesday night, I made the decision and my co-worker confirmed he’d be in for me.

Wouldn’t you know it, on Wednesday I wasn’t in a lot of pain. But I’d already sent someone in to work for me. The guilt came and went, back and forth, all day. And still no outward presense of george.

Throughout the day, I had severe low back pain when attempting to do anything other than recline on the couch. I could not lay down, I could not sit at my desk, I could not stand for any length of time. The only comfortable position for me was sitting on the edge of the couch cushion or leaning all the way back on the couch.

 
I had mild to moderate nausea all day yesterday, and was weak and shaky upon standing/walking. Despite this, I was experiencing XXTREME NESTING, which meant I wanted to bleach the walls and floors, vacuum the cats, and shake out the mattresses.

Over a three hour period, I was able to wash four small walls in the bathroom, using warm water and borax mixture. Our bathroom is crazy-shaped, and has eight walls. I also washed a few dishes and scooped the catbox. That is a lot of activity for someone who is nauseous, weak and shaky. But I am stubborn and had to do something with my guilt complex.

I did not take any medication until bedtime last night, when I took 600mg Ibuprofen and a half of a Tylenol 3. I had begun spotting by midnight, but when I got up this morning, I was no longer spotting, and I wasn’t in pain. So I went to work.

By 11am, the pain was making itself known, and I’d begun spotting again. It was thick, dark, sticky.
My pain on the Allie Brosh pain scale was at:

 
…which is actually a 4.5 to 5 on the Mankoski Pain Scale.

By the time the kids were dismissed to lunch, my pain was reaching a 5 on the Allie Brosh scale:

 
…which is actually a 7 on the Mankoski Pain Scale.

I promised myself I would leave work right after the childrens’ lunch hour. There was no one to take my place during that critical hour, so I pushed through it.

When I left work for the day, it had become almost too difficult to walk to my car, which was parked a block and a half away. Every single step was jarring to my pelvic region. The nerve pain seared from my pelvis down the insides of both legs to my knees. It’s so difficult to describe the leg nerve pain that comes with endometriosis - people aren’t usually able to comprehend that one would have leg pain associated with pelvic pain - but it makes total sense if you look at the nervous system. The pelvic area is rich with nerves (as seen in yellow in the image below), which extend down the legs.

 
If you look at a full body nerve diagram, you can see a bit better that any nerve inflammation in the pelvic region would of course touch on surrounding nerves and radiate down the legs.

 
All this is actually in line with what Dr. Ian Fraser is saying in his Mysteries Of Endometriosis Pain lecture last year. He had found in his research that “Sometimes sizeable nerve trunks were identified passing though peritoneal lesions, something never seen in normal peritoneum”, and had commented that “It seems probable that the invading endometriosis bringing its own nerve supply links up with the intrinsic (enteric) nerve plexus of [for example, the bowel], resulting in excessive branching and proliferation of multiple nerve fibers.”

When I got to my car, it was difficult and painful to get into my car. I drive a Dodge Neon, which sits low to the ground. On top of that, the seats also sit low inside the car, so it nearly feels like I’m getting into a go-kart or bumper car.

I curse myself as my illness worsens through the years, saying I really need a Volkswagon or maybe even a Jeep - something which sits higher up both outside and inside.

When I got home, I sat in my car for several minutes, trying to work up the courage to draw up my knees, turn and push myself out of my car. The prospect of that seemed traumatising to me, considering the level of pain I was in.

 
I let all my breath out and slowly, methodically got out of my car, one muscle group, one body part at a time. Bending forward to get to my belongings behind my chair was painful task #2, and then stepping up onto the high curb was painful task #3. Then I was home. Thankfully I was able to have parked directly in front of my home.

What sucked was that it was my lunch hour, and I was starving. As is usual with the pain, I was very picky with what I wanted to eat. I didn’t want the fresh vegetable soup I just made, noooooo. So I popped a Tylenol 3, made some gluten-free pizza and a chocolate cake, and after eating my pizza, took a drug-addled nap.

To describe this month’s cycle in two words, I would say HIGHLY AGITATED.
I don’t want to be in my own body or mind. The brain weasels are bad enough on a New Moon without the hormonal whack of endometriosis adding to it. Can’t wait for this month to be over.

The old guilt is back again, because I have to take another day off work for the pain. Let’s back up a day though, so I can catch you up on Monday.

I knew Sunday night I wouldn’t be in any shape to go into work on Monday, so I’d made the necessary calls. The pain woke me up before 8am on Monday, and I had to cram food down my throat to line my stomach in order to take my pills. I started off with one and a half Tylenol 3 first thing in the morning because of the pain. I had decided that due to the pain level (8.5 on the scale), I would be better off in bed than on the couch with the laptop. My husband was getting ready for work and was off in the shower. Me being impatient, I decided to set up for a day in bed despite being in a lot of pain. I was clutching a heating pad with one hand and moving blankets and such with my other hand. I decided this would actually make a great video - detailing that it’s hard work on a person in pain just to set up for a day in bed if one still wanted to have a connection to the outside world. I did a video outtake and settled into bed, exhausted. I think I fell back to sleep at that point, I can’t remember.

Within the first few hours in bed, my lower back and buttocks decided they could not take the pain of sitting in bed. I moved to my computer chair at that point. This is unusual - my body normally cannot handle sitting upright when I’m in so much pain. But the lower back really needed the support of a chair.

I spent much of the day wrestling with iMovie ‘09 on the laptop before launching iMovie ‘05 on my desktop machine and figuring that out much faster than iMovie ‘09. I had created a video back in February to update everyone on the past year of my life - it’s been that long since I uploaded any videos to youtube!! And now it’s taken another month on top of that to figure out all the edits I wanted to do for the movie. The end result is that I’m getting much better at making videos.

I ended up taking three Tylenol 3 and 600mg Ibuprofen over the course of the day, yesterday. I stayed as constantly medicated as I could. By the time I went to bed late last night, the bleeding and the pain had subsided. My kidneys were throbbing from all the Tylenol and Ibuprofen I’d fed them.

This morning I woke up with a headache and stuffed up ears, full body sore joints, and a feeling of dread in my pelvis. I ate some leftover pancakes, drank some goat milk, took a half a Tylenol 3 and 600mg Ibuprofen and called in sick to work, expecting the worst. And then extreme fatigue claimed me and I crawled back into bed and slept for another three and a half hours.

The pain woke me at 11:48am. I cooked some leftover yummy Thai food my neighbor had brought me yesterday out of the kindness of her heart (my inner Southerner says “bless her soul”), and before I could eat, the bleeding and pain started up again as I knew it would.

I’m on round 2 of a half Tylenol 3. The joint pain is still flaring, and my legs are bloated to the point of feeling very sore from the thighs to the ankles, and especially under the knees. The bleeding didn’t get as heavy as I thought it would, and the pelvic pain didn’t get as bad as I thought it would. It spiked at about a 7 and is now down to 5.5 on the scale.

My guilty conscience says with pain at a 5.5 on the scale, I could have gone in to work. But then I snap out of the guilt and remind myself that I’m still on Tylenol 3 and Ibuprofen to manage said pain, that’s WHY it’s at a 5.5 on the scale. AND I’m not stooping and bending, kneeling, sitting and walking like I would have to do at work. So I can cut the guilt crap out RIGHT NOW. I don’t work no desk job anymore.

So that’s where it’s at today. I wish the waiting lists weren’t so long at the dispensaries to get free reiki or body work done. I would LOVE a full body massage right now. Le sigh.
Maybe I’ll find enough strength to scrub out the tub to take a hot bubble bath.

Oh - side note - I’m back on the herbal powder my acupuncturist gave me. We decided to give it another try, see if my body has reactions to it. So far so good. I’ve been drinking it 3x/day using a teaspoon of the powdered herbs. As for other pain management, I’m still doing large hip circles, slow stretches, and basic yoga poses.

Lastly - the weather. This is the third sunny day I have missed enjoying during this cycle due to the pain.

This morning I got up, ate two bowls of cereal, leaned over to pet my cat, and the nausea and weakness set in. The pain and bleeding, which had stopped overnight, also resumed.

I hemmed and hawed for a few minutes, then called in sick to work again. My body wanted to puke and the pain was only a 6 on the pain scale.

At 8am, I took a whole Tylenol 3 pill. Within 18 minutes, the drugs kicked in. Sweet!

I have determined that I’m alright, as long as I *don’t move*. I can stand, or I can lay down with heating pads. Sitting or otherwise moving around is right out.

The part that sucks the most is that my mind is feeling better, but my body is not. My mind is awake, alert and ready to tackle housework. But then I take one step and my pelvis cries out in agony.
The Tylenol 3 is not just good for pain dissociation, it’s also good for knocking me flat, so that I’m forced to rest.

Like, right now. I’m super light-headed and need to go lay down.

9:40am Edit:
Just woke with the most mother effing cramps ever. Too nauseous to eat. Take more Tylenol 3? Take Advil? Call an ambulance?

9:50am Edit:
Heating Amy’s freezer brand gluten free mac ‘n cheese. Will take 4 advil gel caps. Already have 2 heating pads on me. breathing.

10:20am Edit:
Got the mac ‘n cheese down. Got the Advil down. Also took another Tylenol 3. Breathing. Waiting. Pacing. Acupressure points.

11am Edit:
I am effectively dissociated from the pain once more. Trying for sleep again.

1:30pm Edit:
Slept for an hour and 40 minutes (until 12:40pm), pretty good.
Problem is, I wasn’t breathing. Had Tylenol 3 induced nightmares. Woke up choking for air. It’s now nearly an hour after I woke up, and I am still drawing deep breaths and hoping for the full return of my faculties, and I have a headache.

I had crazy dreams/nightmares about my ma’s side of the family, like I *always* do when on a lot of Tylenol 3. We had some sort of reunion in someone’s house, which had an upstairs and a basement. There were small dogs, I think. The family was glad to see me but didn’t know how to act around me - as usual I was the weird one. The family acted as though I was cursed, or worse, an imposter of the blood line. But they tried to be nice to me about it. Then it faded to ignoring me. I tried to get photos but no one would stand still. The photos I did get looked creepy, so I declared the house to be haunted. At the end of the dream, I asked the family to all post skeletons as their user pix on Facebook.

The dream is just my fear of rejection surfacing, again. In the past year, I have reconnected with 23 family members on my ma’s side, mostly cousins. I am supposed to have a family reunion with them sometime this year.

I called in sick today because I am still bleeding like a stuck pig, and I knew the pain would return.

As seen on Yahoo chat:

My Husband: 10:25 AM how’re you? *smooooch*
Me: 10:26 AM tired if you can believe it
Me: 10:26 AM pain is about a 2 on the scale
Me: 10:26 AM will be taking meds after i eat

Ten minutes later…

Me: 10:36 AM zenaide forgave me*
Me: 10:36 AM she’s wriggled into my lap
Me: 10:36 AM of course, just as the cramps are ratcheting up
Me: 10:36 AM *carries cat to bathroom to pop pills*

(*I had pushed my cat away from me around 10:20am, as she had tried to crawl onto the keyboard of the laptop. She was furious with me, glared at me and went to the living room and overturned something from a bookshelf, which left a gouge in the pergo flooring).

Seventeen minutes later…

Me: 10:53 AM pain ramped up
Me: 10:53 AM what was i, a 2?
My Husband: 10:53 AM aye
Me: 10:53 AM now i’m a 7.5
Me: 10:53 AM i took an entire tylenol 3 right after eating

I went on about how I should have just taken the meds as soon as I woke up. My husband just last night was telling me not to leave any gaps in the medicating, because pain has leaked through, before. I felt like I left a huge gap this morning, and was beating myself up over it.
My husband said, “but you had to eat in order to take the meds….so it’s not like you were stalling.”
He’s right, of course. I’d gone all night without meds and woke up with an empty stomach - I had to eat. I should have eaten earlier than I did. I woke up around 9am but didn’t eat til after 10am.

This morning I have tried pressure points but my legs are bruised from putting pressure on the points all weekend already. I also tried doing the large hip circle belly dance move, but it hurt like hell, as though I pulled muscles while exercising. I did a lot of hip circles and stretching Saturday night, perhaps I pulled something, or perhaps I’m just so inflamed right now in that region from the endometriosis pain, that any stretching or hip circles are going to naturally make the pain that much worse.
I tried pacing the house. That never works. I tried my breathing exercises; sometimes I swear the more I breathe, the worse the pain spreads.

Now all I can do is wait for the Tylenol 3 to kick in, and take more if necessary.

No alternative medication for me, today. No hippie dippy drug trips. Give me pain killers and lots of ‘em.

My gods, the anal pain just started up again.

WHY.