I Will Not Suffer In Silence

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.

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

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

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

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

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

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

And then I had a food reaction.

It started with a headache half-way through dinner.

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

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

Then I went and changed into my pajamas.

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

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

George has not shown up yet today. Because of his tardiness, I was able to get in another full day of work. :)

Upon waking, I did have some pain, and was sure that by the time I was to leave for work, I’d be in full blown pain.

Instead, I was feeling annoyingly bloated, having low level cramps, and feeling like I might burst into tears at any moment. I went to work, because it was too late to arrange for a substitute teacher. I went in thinking I’d have to turn right back around within an hour.

While waiting for the parents to begin the drive-in drop-off at the school, I stood in silence, taking in the nice sunny morning. It was mostly cloudy but I could still see enough of the blue sky and feel the sun on my face. I stared at the trees in the lots surrounding the school, and I just wanted to cry my eyes out, and I could not explain to myself just why. Hello, PMS.

Although I think part of it is that I expect routine from my illness, and when it deviates, it messes with my head. When the pain is absent for too many days, I actually get hopeful - I envision my illness just vanishing, and I wonder how long it would take for me to really believe it and TRUST being pain-free. Not being bedridden today when I thought I would be gave me some hope that perhaps this cycle won’t be as harsh, and maybe it won’t even be painful at all. But 24 years of cyclical endometriosis pain seems to laugh at that notion.

Just after 9am, the pain was enough that I took what Ibuprofen I had on me - 400mg gelcaps - and waited for the “real pain” to arrive.

I was super tired for most of the day, but the pain never got above a 4 on the scale. :)

All day I have had fierce sugar cravings, and I’ve had to keep my attitude and my anxiety in check all day, because of the PMS. I swear, if I’m not experiencing pain before my period, I’m experiencing really bad PMS! I will take that over pain though!

After work, I went to my acupuncturist appointment. I was super tired, forgetful, and dazed, but not in pain! I got treatment points in the feet, legs, pelvis, left wrist, hands and ears, then after that treatment, I received treatment points in the lower back, since that’s where a lot of my pain has actually been in the past week.

When I got home, I was still feeling tired, but not as tired as I’d been before the acupuncture appointment. With a little coaxing, I convinced myself to get some housework done with this extra time on my hands.

Because george was late, I was able to work an entire shift today, go to my acupuncture appointment, fold and put away five blankets and a slew of clean towels, unload the dishwasher and load it back up again, and wash some stuff that can’t go into the dishwasher. I also cooked up some gluten-free, yeast-free pizzas for me and my husband.

All that, on a day I was supposed to be bedridden. :)

So despite my crazy emotions, I really am thankful to have had one more day without george.

I was able to enjoy one more night out on the town before calling it quits and admitting to my body shutting down for the next cycle of pain.

Friday April 9, I think I stayed home, cuz all day at work I had been really tired and had low back pain. I had gone to bed at 9pm the night before, and had to be at work much earlier than usual (6:50am vs. 11am earlier that week), so I’m sure some of the fatigue was just because I had to get up so early.

Saturday, my husband and I took a jaunt over to the other side of the Bay and I got an impromptu hair cut to get back the bangs I’ve been missing:

 
Later that evening, we had dinner and discussed what to do that night. My husband wanted to see Rocky Horror Picture Show, but another friend who planned to go with us fell ill. That’s when another friend called and said she and her husband were throwing a hotel party for their one year wedding anniversary. We met up with them for a couple hours in their super awesome Death Star-like suite, then like the rock stars we are, we jetted off to Club Gossip, an 80’s club night, where another friend was having Part One of her birthday weekend celebration.
No pix to share from that night, sorry!

On Sunday, I slept in, and while stretching in bed to wake up, I “blew an ovary”. I swear, that’s what it felt like. I cried out, went fetal and clutched myself, whimpering for a couple minutes. I had right side ovarian and uterine pain for the next two hours. I took it easy on the couch for at least that long. Ugh.
By late Sunday afternoon, I felt well enough to start laundry, but of course, the pelvic pain returned. I pushed through it. I did do three loads of laundry, dangit. My husband and I also went grocery shopping, I cleaned out the fridge, and got some vacuuming done, all despite the pain, which was at a 4 on the scale.

Speaking of pain scales, I’ve been using the Mankoski pain scale, developed by Andrea Mankoski, who also suffers from pelvic pain and did a beautiful service to women by providing a more rational scale than the one normally used by doctors and emergency rooms.

However, I think it may be time for me to turn to another revised pain scale, developed by Allie Brosh, who, when I wrote to her, admitted that she too suffers from endometriosis.

I LOVE her pain scale!

Today I have been at a 4.5 on the Mankoski pain scale, or a 3.5 on the Brosh scale. Here is what 3.5 on Allie Brosh’s scale looks like:

 
I needed 600mg of Ibuprofen gel-caps to get through work today, and every time I sit down or lean over, I end up stuck in that position and the pain sets in immediately. I have to move really slowly to try to straighten my back out.
All day today I have felt like I am out of breath. This is “normal” for me when I’m about to be stricken with another endometriosis flare. I call it a flare because I do not suffer symptoms full time - just around the time of my menstrual cycle.

I have also been suffering from anxiety today, despite the fact that groceries are purchased and bills are paid. Oh and yesterday, I thought I might tear my husband’s head off over things that probably don’t normally make me upset. I say probably because right now I have no idea. Who am I again?
Maybe it’s the impending New Moon. Maybe it’s the impending Mercury Retrograde. Maybe it’s the cold, rainy Pacific winter that won’t leave, yet. It rained all day today.
Or maybe it’s just that my hormones are completely whacked because of endometriosis. I need to start drinking the specially prescribed Chinese herbal tea again, now that I’m heading into the next cycle.

Well shit. It’s 8pm. Gotta get some XXTREME NESTING type cleaning done, as well as some cooking, before I attempt to crawl in to work tomorrow.

I was able to go back to work on Wednesday. I had minor pelvic pain and was spotting. I was slow moving and tired of course, being that I’d spent the previous four days hopped up on Tylenol 3 and Ibuprofen for all the pain. I survived the day at work, assisted by a total of 1,200mg of Ibuprofen. On my lunch break, I was asked if I could come back that evening for after hours daycare - I said yes because I’d already missed the previous two days of work and felt that I needed the money. It’s hard because my husband makes $80K/yr. I currently make about $18K/yr. That seems like quite a lot of money just from my husband’s income alone, right?
If we only existed on his income though, it would hurt in the state of California, which is quite expensive where we live (Bay Area). I keep saying we should move back to Michigan but one, there’s a lot fewer jobs, two, there’s snow, and three, my native-California-born husband is terrified of Michigan, calling it a cross between Deliverance and Blair Witch Project.
And so here we are, living in sunny California, and I am in my first year as a Montessori teacher, working for peanuts to add to my husband’s income so that we can live comfortably.
Don’t get me wrong, I couldn’t NOT work. I’m too much of a spazz to be left on my own all day. I just couldn’t do the housewife thing.

On Thursday, I got moderate pelvic stabbing pain beginning after 4pm (thankfully after I was out of work). I was still spotting bright red, and began to seriously wonder if the last gasp hadn’t occurred on Tuesday and was laying in wait.
Thankfully, I was wrong. The last gasp had in fact happened on Tuesday. What I was experiencing on Thursday was probably due to not having slept well Wednesday night, working a full day on Thursday, complete with a lice outbreak I discovered at the school and me having to be the one to inspect the entire rest of the class’ heads for lice because the head teacher was too wigged out to continue class at that point (thankfully, only the one child had it and was sent home immediately)….and after all that I zoomed across the Bay Bridge to try to make it to my friend’s arbitration meeting in time, and I got a bit lost on San Francisco’s rush hour streets. Just a wee bit of anxiety that day…

Have I ever mentioned how much I hate driving in San Francisco?

I really hate driving in San Francisco.

I guess I could have taken the BART to The City and walked from the station to the arbitration appointment.

Have I ever mentioned my fear of taking public transit alone?

I really hate taking public transit alone, because I’m afraid I’ll get lost. Getting lost as a pedestrian is even more terrifying to me than being lost while driving.

I got through Thursday but came this close to a panic attack after it was all said and done. I nearly ended my sobriety, but thought the better of it and made myself some bedtime tea when I got home. More and more, my body is rejecting the things I’ve loved to eat and drink, be it through allergies or be it through hormonal imbalance setting off more pelvic pain. I can’t really go back to drinking wine or liquor because of the immediate side effects from sulfites, glutens, bad distillation, immediate ovarian and/or uterine cramping (mild but enough to make me uncomfortable)…it all makes it worthwhile to just stay sober for once in my life. I spent too many years as a weekend lush, out at the nightclubs, drinkin and dancin til I blacked out. Yeesh.

I didn’t get to bed til 11:30pm last night, and I didn’t want to get up for work today, because my head teacher was out of town and I knew I’d have to run the entire class on my own.
I did it though! I did it! I managed 17 first and second graders through their scheduled curriculum today, woohoo! And they behaved well for the most part!

At the close of the day today, I was suffering headache because I hadn’t had time to eat lunch, and I hadn’t been drinking enough water. My low and mid back were screaming in pain as well, probably because I was so nervous at having to run the entire class on my own with occasional help when the afternoon supervisor had time from her busy duties. All the teachers are stretched at this school right now. I’m thankful I had help at all. Another teacher came in towards the end of the day and took some papers for grading off my hands. I need to get that woman a gift for that.

So I am sitting here on the couch, my first day no longer spotting. I am still hugely tired and cannot go near a gym until at least Sunday. I am still freezing my ass off, even though it is 70°F in the house.
Despite that, I declare Friday, March 26, 2010 the day I START THE CLOCK for the next cycle, because I’m no longer in pelvic pain, and no longer spotting enough to wear a pad.

The clock is set; I have 18 - 19 days before the next cylon attack bedridden time.

It is the weekend - a weekend I will get to enjoy because I will not be bedridden! Tomorrow is supposed to be sunny and 71°F. Ahhh, bliss.

I’m still convinced the horrible pain I was in last Saturday was a ruptured ovarian cyst, because the bleeding took so long to begin this cycle, and it’s very thick and dark. I slept for about nine hours and woke at 12:30pm yesterday. I was still barely spotting and was not experiencing a lot of pelvic pain. I should have been jumping for joy, right?

Instead, I began fretting over Time.
I was due on Friday. I’m usually on time. Descending to the underworld full speed ahead Friday morning would have meant that by Sunday night, most of the pain and despair would be over with, and I’d have a good chance of returning to work on Monday.

But no. The pain and bleeding ramped up late Saturday afternoon, so that means I have Saturday night and all day Sunday to get this endometriosis cycle out of the way before Monday 8am.

Fat chance.

I hate taking time off work every goddamned month for this illness.

I’ve been fired from two jobs because of this illness, and although I’m assured on the current job that I’m special, needed and wanted despite my illness, I still suffer the PTSD from those two other jobs. One harassed me for months before firing me. One harassed me for a couple of weeks - I quit 2 days before they were to fire me cuz someone leaked it to me.

I hate that I barely make enough money to even try pulling any financial weight around the house. Missing work gives me that much less money to work with. It may as well be babysitting money. I cannot cope with not being able to go halfsies like my husband and I used to do. He assures me it’s fine - that he’s so happy to see my sanity restored by working with kids again instead of in corporate hell. He keeps gushing about seeing all the kids that ran up to the fence Friday afternoon to say goodbye to me as I left work for the weekend. I call them my fan club. ;)

And those poor kids - I currently assist a class of mixed first and second graders. One of their teachers has been out sick for over a month - she’s got something serious and the staff’s not talking much about it. Could be cancer, could be lupus - it’s definitely taken out her immune system and she’s been having surgeries. I spent 3 weeks in that class with the co-teacher, and now I might be out sick for a day or two. The kids can’t take much more upheaval. Some of them were literally sobbing when their teacher came by for a visit Thursday afternoon, they miss her so much.

So it’s pretty obvious then - I don’t like letting people down - and having endometriosis means I will miss work, I will miss parties, I will miss appointments, I will miss out on life. I’ve been meaning to chronicle how many sunny days I lose to endometriosis in a year. It was in the 60s and mostly sunny today, and I couldn’t be out in it to walk around, bicycle, go hiking, because of the pain.
If I can make what I go through as concrete as possible to people, I think that might help quicken the pace towards a cure - more people will demand and fund more research to find a cure for endometriosis.
Education and awareness - it’s a small bit of hope I have.

Hoo boy. I need to do a sum-up. I’ve been noting all the details of my health in another diary that I keep. It hasn’t had anything to do with endometriosis, so I’ve not been spewing it, here. However, I’m in full on pity-party mode, so I’ll share some details here. The best way to get across how I’m feeling will be in visual format (click image to make bigger):

I’ve not had a day where I’ve felt alive and well since January 22 - a full month ago.

The red dashes through calendar dates means I missed work that day.
Anything in purple text denotes multiple chemical sensitivity reaction or danger of reaction. The oil spill remains a ‘danger of reaction’ since I have not had anything immediate happen. I went to the doctor’s office on Wednesday, February 17, because when I’d tried to go back to work that morning, it felt like my lung was collapsing. The chilly morning air and the thick fog made my lungs ache badly and it became hard for me to breathe. I looked pasty white. I barely fixed my hair to go to work, I was so sick. I turned right around and came back home because my lungs hurt so bad and I was having trouble breathing. I was able to get into the doctor’s office at noon that day, and saw a different doctor. She listened to my heart and lungs. She said I have ‘junk’ in my lungs, and that I was wheezing. She gave me my first ever albuterol treatment (nebulizer delivery).
Although it cleared my lungs and made for velvety smooth breathing for the next six and a half hours, the ingredients in the albuterol treatment also made me very light headed, gave me tremors, and removed my ability to concentrate. I darted my eyes and head around and had anxiety all day long. I told the doctor I can’t work in that state, and that the treatment is no better than the illness itself. I opted to stay home another day.

When I got back home, I found Alameda County Industries vehicles all over the intersection near my home. They were shoveling a sand like material onto a spill of some sort, which was all up and down two streets and filled the intersection. I saw a garbage or recycle truck with its hazard lights on. I went over to the working men and asked if it was hydraulic fluid that had spilled. They said it was. They assured me that the sand they were putting down was harmless, and was like ‘kitty litter’.

Please google hydraulic fluid toxicity to learn more, and also check out a news story about a woman who died after a similar accident.

I have also uploaded photos here. My lips were stinging when I got back into the house last night after taking pictures. I should have worn a mask of course. Of course.

I shed all my clothes in the kitchen and put them in a garbage bag. I took a shower immediately. Thankfully I did not have any immediate chemical sensitivity reaction to the spill. Only time will tell if I will become sick from the spill.

On top of all the viruses and multiple chemical sensitivity crap, now my period is two days early after I’d declared to my husband that I was sure it would be late, since I was not feeling any premenstrual pain. Nothing - no warning cramps, no having to check myself because it ‘feels’ like I could be bleeding. No ovarian stabby. Just HELLO! an hour after I got home from the doctor’s office.

The thing is, I *did* have some premenstrual cramping last Thursday - after my acupuncture appointment. I’d seen the acupuncturist for the sinus infection, but while there, she did some lower back work on me, cuz she knew my period was coming. That night, I felt low, dull pain in the lower back and at the back of the uterus. It was barely registered on the pain scale though - just faint rustlings.
On Friday, I had some slightly more annoying rustlings, but still, I did not need medication. Then on Saturday and Sunday I had no pre-menstrual cramping at all, most likely because my body was busy dealing with a yeast infection, which I get every single time I take antibiotics.
Please don’t tell me to try eating yoghurt or probiotics when on antibiotics, I already do that. Please don’t tell me to keep hydrated when on antibiotics, I certainly do that. I still get yeast infections, every time.

I decided to get a one-day Monistat™ treatment. I did that Sunday night right before bed.

I woke in the early hours Monday morning to use the bathroom. I wiped and … something wasn’t right.
My inner labia were hanging way down past my outer labia, and they were thick; puffed out, and stiff as boards. My heart jumped. WTF is going on!?!?
I wiped again, and the labia let me know they weren’t happy. It stung - it burned. I could feel my pulse in my labia.

I phoned up my family doctor and my gynecologist and left messages. I decided to not outright openly panic, so I got ready for work. It hurt to wear slacks, or tights, or even underwear for that matter. It hurt to sit down of course.

I went to work anyway. The doctors offices called back - the gynecologist wholly misunderstood my voicemail and told me I should try Monistat or Diflucan for my yeast infection. The family doctor got me an appointment after work.

By the time I got out of work, the swelling in my labia had gone down considerably, but it still hurt and pulsed with discomfort, so I went to the doctor. He did an external exam - not a pelvic - to examine the labia. There’s nothing he can do - just have to wait for the swelling to go down. I told him I discontinued use of the antibiotics. He said that was fine.

I got home from the doctor, and before dinnertime, discovered that my period had arrived without warning.

So now that george is here, I will go to bed and see what tomorrow brings - will I be able to go to work, or will the pain leave me bedridden?

Stay tuned…

Back on January 21, I saw Dr. Streitfeld, who referred me to Dr. David Adamson, who is a reproductive endocrinologist.
I’ve been leaving messages for his office and for a regular endocrinologist named Dr. Grace Eng, who I tried to see in 2009 but for some reason never got to.

Anyway, today I finally got a live person on the phone at Dr. Adamson’s office, and within seconds my heart was broken, my hopes dashed.

“I’m so sorry, but Dr. Adamson is no longer seeing patients with endometriosis - he only sees patients with endometriosis who are trying to have children.”

I was shocked. I thought some sort of cruel joke was being played on me. I could hardly believe what I’d heard was real. I thought, he’s no longer giving endometriosis patients the time of day UNLESS they want babies?!?!?! What the hell kind of slap in the face is that?!

I kept my voice even and as sweet as the secretary’s voice. I asked if there are any other doctors that Dr. Adamson is referring endo patients to.
I was told he refers patients to Dr. Andrew Cook.
Well thankfully, Dr. Cook is on my short list, so I called his office, next.

I was all set to schedule a new patient visit, when the secretary gave me the lowdown:

They don’t DO insurance - they want prompt payment from my bank account or credit card. But they are happy to submit a claim to Aetna insurance company on my behalf for the rest of the money to maybe be returned to me. From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500.

I told the secretary I’d have to talk it over with my husband and give her a call back.

When I got home, I also remembered that Dr. Streitfeld had said he thinks I could have adenomyosis, which could be detected on a MRI or a PET scan. If I want to skirt around seeing Dr. Cook in the short term, perhaps my current GYN can just send me for a MRI or a PET scan…so I logged into Aetna’s website and looked up the pricing. I did not see PET scans being offered, but MRI is. For in-network, a MRI will cost $1,772. Of that, I am unsure how much my co-pay will be. I had a echocardiogram in 2009, which cost over $4,000. There were two or three insurance adjustments made, and I ended up paying around $470, which is still a lot of money, and took me a year to pay off, because I only make $11/hr and my husband doesn’t like shelling out his own money, even after he assures me he will (but that’s a whole other can of worms).

I sulked.

Here I am, trying to do the best thing for my health; I am trying out alternative therapies, which are costly and out of pocket. I am trying to find a new gynecological surgeon so I can get surgery number two after the first one three years ago never gave me any pain relief, and now I find out that the type of surgery I am interested in (excision vs. cauterisation) is also going to be an out of pocket experience.

On top of that, I have been at my recent job for 10 months with only partial training for the job. This keeps me at assistant status, which keeps my pay low. I need to shell out $1,700 for classes THIS SUMMER, which will bump me up to head teacher, which will increase my salary.

The dilemma is this: stay on the job and take the courses, but continue to miss work each month due to the pain, OR start seeing Dr. Cook, save every penny I can, and get surgery number two, which will require me to take weeks off work to recover from the surgery. When I get back to work, I’ll be playing financial catchup for a year or more.

I even mentioned my financial frustration to my husband in chat when I got home from work.

Me: i’m beginning to feel the reality - i can EITHER start on a new path with a new surgeon and get that second surgery in hopes of long term pain relief, OR i can go to montessori teacher training.
Husband: at least for now?
Me: right
Me: this year
Me: those are my choices
Husband: well, there is the lottery…:/

This exchange left me feeling not only frustrated, but mad.

Before you even think to ask me about credit cards, yes, I have two, and they are already maxed out since our honeymoon in May, 2009, and my having to live off of them since that time because my husband doesn’t like to spend his money to support me. Even though he says he’s fine with it, the money is not there whenever I need it. I had an acupuncture appointment last week, and forgot about it til the last minute. I asked my husband for financial assistance ($50) the night before the appointment, and he got real upset with me. He grudgingly wrote out the check.
On Friday, I asked my husband if it would be possible for him to withdraw up to $100 in cash on Saturday so we could look at what the dispensaries had to offer me in the way of alternative medication. He said yes, and seemed to not have a problem with this. He patted himself on the shoulder that day for supporting Prop 215 “by putting my money where my mouth is”. We got inside the dispensary and I priced out a few items. I wanted to try the butter, the mocha mix and a tincture. The cost would come to just under $60.

My husband told me I could EITHER get the butter OR the tincture. His face went grey with how expensive each was (about $22 and $36 respectively).

So for a man “putting his money where his mouth is”, he withdrew $100 for me to get what I wanted to treat my pain, and then only permitted me to use $28 of it.

This is a man who makes $65,000 MORE than me each year, and he’s suggesting I try the lottery to cover basic needs of raising my income via schooling, and surgery to alleviate or minimise chronic pain.

We have a joint bank account. It has been empty since the honeymoon.

We’ve had several talks - or rather the same talk over and over. Nothing is changing.

He pays all of the rent on our apartment, and he often helps pay for my expensive groceries (see my list of allergies and whatnot). He has taken over the long distance phone bill and the land line bill.

I pay for my cell phone, my auto insurance, some groceries, my two credit card balances, the DSL connection, our renter’s insurance and earthquake insurance. That alone takes up most of my paycheck every two weeks.

My husband is on his way to band practice right now, and I will be asleep when he gets home, so I emailed him, requesting that we have yet another financial talk. If I could only get official confirmation that he will not support me financially, instead of this wishy washy bullshit, then I can formulate a plan to care for myself.

If I am on my own financially, I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.

Last night I went to bed around 9:30pm. Tonight I’m doing the same. I’ve been thoroughly exhausted for the past two days. I’m bloating like crazy. My lower legs and ankles are swollen. I get worn out and breathe laboriously just by walking or having to get up.

I take my vitamins and I’ve upped my Chinese herbal supplements to 2 pills twice daily. I got anxiety so bad around 3:30pm today that I thought I’d have a panic attack at work. I had to do my breathing exercises and it almost didn’t help. I had to fight through it with anxiety, racing heart and feeling of being suffocated. I left work at 4pm. I wonder if it’s PMS and I’m just stressed out by the data collecting I have to do on the job - I’m just an assistant - my head teacher should be doing all of this. She should have the long day, not me. Ugh. Give me the damned title and pay already, people.
So perhaps it was just that. But part of me is now wondering if it’s the herbs. I’ll talk to my acupuncturist tomorrow. I’ve got to ask her questions about how to deal with bloating and fatigue, as well.

I’ve been feeling low dull pain with the bloating since Monday. On Saturday and Sunday is when the right side ovarian stabby started - at least that abated by Monday.

I took 400mg Advil gel caps before bed last night - doing the same thing tonight.

On a bright note, my husband’s gym is offering a special so I signed up today after work. Half of what he pays per month, plus a month free, plus a free session with a fitness trainer. I told the trainer what my physical restrictions are, about my illness and what my goals are - we are to meet after this upcoming round of doom is over.
We are also experiencing a break in the rain - I think it’s rained constantly for a week and a half, I forget. Today there was no rain. Tomorrow is supposed to be dry, too, and then the rain returns on Friday. Imagine my mixed feelings at this - it’s bad timing for my health, cuz I’m winded just getting up out of a chair right now, and my body feels like lead. I want to bicycle but if I bicycle the one mile to work in the morning, I’ll have used up too many spoons to get through the workday, which involves literally running after children on the playground, both to entertain them and to get to them before or right after injury happens. There’s also the lunchtime cleanup, which involves sweeping around and under 3 picnic tables. It may sound easy to some but operating a broomstick really hurts my back and sides and abdomen a few days before menses. Then I’d have to bicycle back home - if I made it back at all without collapsing, I’d surely collapse for the night as soon as I got home from work. So bicycling this week is out of the question - not enough spoons.

I’ve been doing slow stretches of my arms up as far as I can reach and holding it, then tilting to one side, then the other - very slowly. My back feels like I’ve pulled the muscles. This is ‘normal’ and happens every single month, right before menses, as my body tries to fold in on itself like a pillbug. I’ve also been doing the large hip circles I always do to try to manage the pain. Sometimes it’s really painful to begin working the hips, but after awhile things loosen up and I really do feel better. So it is part of my pain management process.

Gah. It’s nearly 10pm now. I really need to be sleeping but I really needed to provide an update on the premenstrual madness.

Goodnight!

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

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

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

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

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

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