I Will Not Suffer In Silence

Thursday, January 13, 2011

Every muscle in my stomach felt pulled that day, probably from all the exercise I had since Monday night. I went dancing Monday, I lifted a 19lb box Tuesday, and did leg lifts Tuesday night.
Because of the pain I was in on Wednesday, I barely took any exercise. My left leg had increasing calf pain all day, too. It felt like I pulled a muscle. I realised after analysing it for hours that my calf muscle was strained because while sitting at the kitchen table doing homework the day before, I had been bouncing my leg the entire time.

I spent most of Wednesday in a bad mood. I was pretty sure it was PMS at that point.

On the good news front, I finally got my patient records in the mail. The bad news is that it did not include the original copy of my disability paperwork. I was very angry. I wrestled with the phone tree for Mt. Zion patient records, was transferred over to UCSF patient records, who said they cannot send originals of anything once it goes into patient file, and they referred me back to the assistant surgeon (Dr. Skillern) who put it in my file instead of giving the disability paperwork back to me in the first place. Oh and I love how she blamed my husband for not getting the paperwork while we were in the hospital:

“I spoke with Dr. Skillern regarding your disability form and she said she filled it out and file it in your hospital chart. Per Dr. Skillern she mentioned this to your husband after the surgery. I thought she filed it in your chart for our clinic. This means that you form is in the hospital medical records department. Either you will request a copy of the form from UCSF medical records department or you can send us another blank form and I will have Dr. Skillern fill it out.” (email correspondence w/ one of the nurses on December 23, 2010).

You know, obviously it’s my husband’s fault, because he did not have enough on his plate already with his wife having gone through surgery with complications, having to be admitted overnight, and he had perhaps 2 hours sleep the night before my surgery due to nerves, and he had to drive home and come back the next day, again on very little sleep, with the urgent notice that my red blood cell count had taken a dive and that I might need blood transfusions or more surgery. CLEARLY it is his fault for not recalling that Dr. Skillern mentioned to him that my disability paperwork was in my patient file and to retrieve it before we left the hospital. OBVIOUSLY Dr. Skillern was far too busy to just set the fracking paperwork on the table next to my hospital bed, and instead had to go the long way around, like she always does.

Had I mentioned how angry I was on Day 27 post-op?

After spending an hour going through phone trees and email with the UCSF nurses, I finally just made copies of the copies so that I had something for my home file. Then my husband drove me to the nearest disability office. To our utter joy and amazement, there was no one else in that office, and someone took my paperwork and said that copies were just fine and everything was in order! I was told that I should be hearing back in a week or so!

Spirits lifted a bit, I did a little bit of homework at the end of the night.

Wednesday, January 12, 2011. One o’clock pm.

I AM SO MAD!!!

I got a copy of my December 28 blood test results to take to my doctor appointment on Wednesday, and right there in bold text, it shows my red blood cell count is low and my eosinophil white blood cell count is through the roof! The eosinophil count was 1,900!!!
‘Normal’ is 15-500! It was flagged as HIGH and everything, in bold text! How could these people miss it?!?!?

I had puked my guts out on December 26th, and I had pain and bloating under the diaphragm, as well as itching all over my trunk from December 26-28th. I was having all sorts of issues and my surgeon’s office kept saying ‘you’re fine’. At my post op on January 5 I was still getting ‘you’re fine’, even though I felt like crap.

Then Monday January 10 I get a call from them saying “uhhhhh can you get a new blood test”?

How can they let THIRTEEN DAYS go by before really studying my blood test results and seeing some kind of major infection going on!

At my January 5 post-op appointment my surgeon’s assistant said “so and so got the results and said it looked fine.” The surgeon asked, “Do you have the paperwork?” The assistant replied “No, it’s at the front desk.” Instead of going to the front desk to get the paperwork, my surgeon asks me, “Do you want to get more blood work done?” I looked at her funny and said, uhhh, no…if you think my blood work was fine…” And my surgeon replied, “Oh! Well okay, you’re fine!”

I am SO MAD! I am kicking myself for not saying GO GET THE DAMNED PAPERWORK YOU LAZY ASSHATS!

ARRRRGGGGHHH!!!

After I settled down from my rage a little bit, I went outside and climbed the stairs to the building I live in. I ascended the stairs SIX TIMES. This is a first. My previous record was three times, five days earlier.

Firsts for today:

• Climbed stairs 6 times.
• I lifted a 19lb box of school work and carried it from the bedroom to the kitchen, spent the afternoon doing homework. Then I carried the box back to the bedroom and lifted and put it atop a 46″ tall dresser. This is the most weight I have lifted since surgery, and it did cause some discomfort, but I wanted to test my limits.

Complications/Complaints:

• Dizzy and weak after stair climbing - despite a full meal an hour beforehand.
• Mild to moderate pelvic and low back pain all day. It got bad enough at times that I wanted to take Tylenol 3, but I’ve become seriously revolted by the stuff since my big scare on December 27.
• Still having diarrhea - this time after dinner. It could be food sensitivity, though; I ate sushi, and some of it had avocado, which has given me diarrhea since 2010 when I became more sensitive to things in the latex family. I had also drank some miso soup, which I have had sensitivity to as well. After dinner, I had cow’s milk ice cream (w/ 2 lactaid pills). So much food - I was plagued by internal gas and too full a feeling all night - it finally simmered down by 11:30pm.
• I’m PMSing. I can seriously feel the uterus thickening. I’ve begun to have major sugar cravings. I found and ate ALL the chocolate in the house. I drank sugary pop twice that day. I am angered at the drop of a pin.

Tuesday, January 11, 2011

I completely exhausted myself between Friday and Monday, and this was evident because on Tuesday, I slept all day. During my waking moments, I was depressed, because I’d discovered that my cat was still peeing on stuff. On Sunday, he’d peed on the bathroom rug. Sometime between Monday and Tuesday, he peed on my homework on the kitchen table. The last time he did this, I had to tear apart my entire Mathematics album and reassemble it (thank [insert deity here] for page protectors, but my handwritten notes were ruined, because they were the only things not in plastic page protectors).

Upon seeing that my cat had peed on my homework again, I broke down sobbing.
Thankfully, upon closer inspection, he’d only gotten the box of page protectors and the outside of my Language Arts album. I threw away some plastic pages and cleaned up the outside of the album, and cleared off and disinfected the table, all while sobbing. My husband stood near me, arm around my shoulders, the whole time. He had asked if he could help and I let out a muffled ‘no’ and continued cleaning. He knows me well enough to know that he was giving me all the support I needed by just being there with his arm around me.

And then, the old idiom, “when it rains, it pours”. I discovered that my surgeon’s assistant (not Skillern, but Wang, the more polite one) had left a voicemail for me about my December 28 blood work. You know, the blood work results that they didn’t bother to fetch from the front desk at my post op appointment on January 5th. The blood work that I had gotten a call about the day after my blood was drawn, saying everything was fine. That blood work.

I called the surgeon’s office back and played phone tag, and fretted. Finally, Dr. Wang called back again.

Turns out that AFTER my post-op visit on January 5, my surgeon decided to actually go and look at the report herself, rather than rely on the “ummm” and “uhhh” of the assistants and front desk people. Good call on her part - turns out they had missed something: abnormally large white blood cell count (eosinophils).
They had kept telling me everything was normal when I insisted it was not - even at my post-op appointment on January 5. HAH. This did NOT help my emotional state that day.
I quickly made an appointment with my local doctor as instructed by Dr. Wang. I was able to score an appointment for the next day, but less than 24 hours was even too long for me to wait at that point.

That day, I took 1mg Ativan, but still refused to take pain meds, even though my emotional meltdown set off instant cramps and fatigue. I can’t say enough how much stress and anxiety bring on and worsen endometriosis pain. Even though I have relaxation techniques and books and podcasts and MP3s on stress management, I still struggle with becoming master of my emotions.
Here’s a good article from an author I trust.

Complaints for Day 25:
My belly button still hurts.

Firsts for Day 25:
Did 10 slow stomach crunches and 10 sit-ups before bedtime:
Lying on my back, I put my legs in the air, bent at the knee. My hands rested on the sides of my body. I held the pose for as long as I could, and then I slowly extended my legs forward and back again, 10 times.

Sit-ups: I laid on my back with my legs bent, feet flat on the floor. I rested my hands on my thighs and sat up slowly until my hands touched my knees. Note: do not sit all the way up.

I still have not begun taking the Lamictal. Still too afraid of experiencing the possible side effects.

I had an appointment this past Monday with my psychologist. This is the same psychologist who, by either the first or second visit with her, decided that I have Bipolar disorder and need to be medicated ASAP.

By the fourth visit, I asked why she kept pushing for me to take meds, when she is a psychologist, not a psychiatrist. She claims she went into the wrong field and SHOULD be in psychiatry, as she knows enough about meds.

Uh-huh. I see.

Anyway, I saw the psychologist this past Monday, as I said. On this particular day, I had awakened to a 99.8°F temperature, but still went in to work. I experienced low uterine pain and low back pain for much of the day, and generally was highly emotional all day. By the time I got to my shrink appointment, it’s what we ended up talking about was the fact that I was PMSing and in a bit of pain.

The psychologist - I haven’t mentioned this before - but there are two things I really, really dislike about her. One, she flutters her eyelids and often goes on for entire paragraphs worth of talk with her eyes closed and/or fluttering. Two, she rambles and doesn’t let me get a word in edge-wise, often talking about something meaningless to my situation, or trying to relate something to my situation that doesn’t relate at all. I finally have to say STOP! loudly to get her attention, so that I can TELL her that what she is saying holds no meaning for me whatsoever.
The last example of the meaningless is when she told me for the third time that she knows for a FACT that *I* will not experience side effects on Lamictal, because she has first-hand experience, seeing her daughter on Lamictal, and she was FINE.

Okay, number one, it’s SECOND-HAND EXPERIENCE, because it’s your daughter, not you. And number two, your daughter does not have endometriosis. She has a seizure disorder. So you cannot tell me for a FACT that *I* will not experience any bad side effects.

She of course wrote me off when I boldly spoke up.

So there we were, talking about my PMS and cramping and my ongoing major depression, when she mentioned that I try to get on disability. I told her I tried that already and was rejected by both federal and state.
This woman sat there and tried to convince me to play the state and federal governments! She told me to miss more work so that I *can* qualify for disability! I told her flat out that I will NOT play sick JUST to get disability pay, because in playing sick, I commit to routine check-ups and drive-bys from the state and federal government, who will make sure that I am in fact, truly disabled.
When they photograph me at the grocery store with a basket on one arm, or photograph me driving in my car, or photograph me going to the gym or whatever - I will lose my benefits. Then what? I have a stain on my record as someone who was a fraud. I may be fined or worse. Then I have to try to get a job again.

The disability insurance people do ’spy’ and take photos - it is part of their job. I worked for an insurance company which provided disability benefits to auto workers. I had to be the one to make the pay cut-off phone calls after people were caught on film doing things they said they could not do. It’s just part of the job in that industry.

So I told the psychologist that going down that road meant playing sick ALL THE TIME, and I will not do that. I told her I have my precious 7-14 days each month where I am active and can get shit done, and I’m not going to give that up just to collect some disability pay.
She kept making a point to stress how much pain and suffering I’m in, and how SHE doesn’t like to see me in so much pain, and wouldn’t it just HELP if I went on disability?

I told her NO, it WOULDN’T help. I told her about the joy I get from the children at work. I told her about how much I love to be able to get on my bike to go to work or run errands. I told her I like roller skating and going dancing - when I am able to do these things, I DO them. I told her that if she takes these things away, I WILL go ahead and kill myself.

When I left the psychology appointment, I was MAD. I went home, changed into my workout clothes, and went to the gym for an hour, despite the low-grade temperature and the uterine pain and low back pain.
Then I walked a half mile to Walgreens and back again to pick up my refill of Lorazepam. I popped two on the walk back home. When I got home, my husband was home from work. I collapsed on the couch in tears, and told him about the visit to the shrink and how I’d rebelled by all the exercise I did. I said the exercise made me feel better, but overall I was more depressed because of the psychologist.

My husband was hopping mad at this woman, of course. He held me and sided with my every reason for not wanting to go on disability. I love my husband.

I stewed over the shrink all of Tuesday, and then on Wednesday (yesterday), I was feeling outright rage. I called on my lunch break and left a message for her.
She called me back and left two voicemails. I could not answer the phone because I was in a meeting with my school director, who wants to place me at the other school location. I’ll go more into detail about that later on, if the move happens.

When I finally had time to listen to the voicemails, the psychologist sounded shaky and emotional, and repeated herself no less than four times about how she never meant for me to go on permanent disability - she was only referring to my post-op, and going on temporary disability.

I called her back or she called me back last night, and I told her in so many words she was full of shit. I brought up my pet peeves with her, and rehashed how the convo in session had gone. She apologised again, and said she’d had an excruciating headache for two days, and should not have come to work that day. I rolled my eyes. Excuses, excuses.
At the end of the phone call, we agreed to meet again next week to give it another chance. But actually, a day after my phone conversation with her, I’m still feeling really pissed off.

These psychologists - they’re more mentally ill than I am! I swear! I’ve not had one yet who I can endorse!!!

I’ve made up my mind. The psychologist is fired.

This leads me to the psychiatrist. I saw her a total of three times; once in January, once in February, and once in September. In-between that time, she was on maternity leave, and then I’d forgotten to reschedule with her. So the third visit counts as #1 all over again. A do-over as it were, since much had changed since February. On that first re-visit, she reviewed my history, and got caught up with my new history, including the cannabidiol incident (documented here and here). The psychiatrist told me there are several documented cases, including some of her own patients, who experienced depersonalisation and bi-polar-like symptoms after using marijuana or any form of cannabis. She assured me I am not crazy or alone in this.

And yet she wanted to prescribe Abilify, which is an anti-psychotic, often prescribed to schizophrenics and people with Bipolar I.

I asked her if she feels I am Bipolar. She said she’s not sure, based upon the fact that cannabis was involved. So I asked why she wanted me on Abilify. She said I should be on some kind of antipsychotic or mood stabiliser to get back to a baseline.

Up til this point, I had told myself I needed mood stabilisers. Now that the psychiatrist, on the first visit, wanted to give me antipsychotic medication, I began to get The Fear.

I told her I’d research the side effects and get back to her.

I called her a few days later and said no to Abilify and asked what else she could recommend.
Lamictal, the same thing my psychologist had suggested, was mentioned. So I said yes, and the prescription was filled.

I went so far as to cut all the pills in half as instructed.

But I haven’t taken one pill, yet.

I have The Fear.

It’s the fear of exactly what happened to me on Yasmin happening all over again (read more about that descent here).

I just don’t want to take another chance. I am convinced that the major depression and bipolar like tendencies I’ve had since the end of July are *because* of a medication (cannabidiol), and therefore I am convinced that taking *more* psychotropic medication is NOT the answer.

Let me work through this. Specifically, let me be active and work out the anxiety and the inner and outer restlessness.

I have been to the gym only 9 times this year. I have bicycled to and from work 17 times this year.

Ten of those 17 times have been within the current school year (which began August 31, 2010).

It is my personal expert medical opinion that I need to up the gym time. I need to become an exercise fanatic. THAT will manage my mental imbalance.

Give me some time to see this through.

If it doesn’t solve the issue, I’ll stare at the bottle of Lamictal again.

I should start noting my mental state here. I’ve been seeing a psychologist, and I saw a psychiatrist on September 14. Both think I may be bi-polar, but they do not agree on which type of bi-polar I am.

The psychiatrist gave me a prescription for abilify, but I refused to take it. I asked for and got Lamictal, instead. I still haven’t taken it, though. I am afraid of more side effects. I’m done with more and more mental stuff going wrong with me.

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

I’ve already been wrestling with what I call ‘dangerous depression’ since the end of July.

Well, it’s getting louder in the head, and more externally vocalised.

I went with my husband to a Victorian-era home showing that happens every year in our city. There were eight homes on the bill to walk through. I did not enjoy it this year. It was painful to move. My low back pain crept back in to flare with the trapped nerve in the shoulder, every time I had to climb stairs, or really move at all. And I was still in pain from one visit to the gym last Thursday.

I was super depressed.

I guess it doesn’t help that I’ve been on Soma (muscle relaxer) for two weeks, and I know from experience that it adds to my depression. I have not had a dose of it today and will refrain from taking any more of it.

After the home showing, there was the annual parking lot sale over at the famous tiki bar in town, so we went on over.
I immediately went for the booze. First time in 51 days that I got absolutely full on drunk. My husband had gone off to his sacred game night, leaving me in the company of friends still at the tiki bar. I was still going when his game session got out around 10pm. He picked me up and took my sorry ass home. Thankfully, no tears or puke or hangover this time. I drank lots and lots of water, thanks to a very attentive bartender, and was a good girl and drank lots of water when I got home, and took vitamins and advil.

I remain dangerously depressed.

Today at work, while rocking a child at naptime, I got stabbing right side ovarian pain that lasted for about five minutes. It went away until now. I’m just sitting on the couch, typing, and the ovary is pulsing a low stabbing pain. Today is Day 10 of the new cycle, so I guess it’s mittelschmerz, which usually happens at Day 8 of the cycle, but has been off by a day or three for a few months, sometimes not happening at all. I blame it on the endometriomas on both ovaries.

I bicycled home from work in 95°F heat - thankfully the ovary did not stab me on the ride home.
But I am wiped out after spending some time in the outdoors at work today. Ugh.

So this mental health thing. The meds. I’m so tired of meds. Today I started a detox diet - the one I tried to start back in July or August and didn’t keep up with. So I started it over today. Lots of supplemental pills to take with every meal.
And then either tonight or sometime this week, I might begin taking the Lamictal. I’m terrified of it. Read all the horrific side effects here. If you think that looks bad, read the side effects for Abilify, which is what the psychologist originally wanted me on and I said no way.

Now, let me tell you again what I’ve said before. I have been going through what I call dangerous depression since the end of July, 2010, because of all my pain conditions and reactions to medications.

This is also known as, yes I will spell it out and face up to it: suicidal ideation.

I have wrestled with suicidal ideation for much of my life, so this is nothing new. The frequency is what is worrying me.

But look here, if I take Lamictal or Abilify, the warning is basically the same:

Patients, their caregivers, and families should be counseled that AEDs, including LAMICTAL, may increase the risk of suicidal thoughts and behavior and should be advised of the need to be alert for the emergence or worsening of symptoms of depression, any unusual changes in mood or behavior, or the emergence of suicidal thoughts, behavior, or thoughts about self-harm. Behaviors of concern should be reported immediately to healthcare providers.

Why would I want to take a drug that will make me MORE suicidal than I already am?

I already went down that road once, with SSRIs (Paxil), back in 2000.

Honestly, I probably won’t take the medication. I’ll get my diagnosis officially recorded as bi-polar something and then I’ll manage it myself. I’ve lived this long…

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

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

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

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

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

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

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

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

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

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

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

What a sucky end to my birthday weekend, though.

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

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

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

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

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

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

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

It’s always something. :(

My friend Jeanne over at Chronic Healing wrote an article that I simply must describe here.

Her article, titled “Endometriosis Patients Viewed As Cash Cows?“, addresses a rhetorical question that’s been brewing in my own mind for quite some time.

I am subscribed to a number of news alerts, medical journals and publications (as is my friend Jeanne). Every so often, I’ll see something like, “Newly published market report on Hormonal Contraceptives - Since the 1960s, hormonal contraceptives have been widely used as effective birth control in the developed world. Although they are mainly used to prevent pregnancies, they can be used for treating other conditions such as acne, endometriosis, and polycystic ovarian syndrome. In 2008, the hormonal contraceptives market was worth $6.2 billion across the seven major pharmaceutical countries.” (Nov. 27, 2009)… and I’ll think to myself, “Hm! Me being sick sure does make a lot of money for some people! Amazing how I’m still not well, and how these companies are booming!” But then I let it go without bitching about it on my main Living With Endo site.

The latest such news item was titled, “Global Endometriosis Market to Grow to $1.1 billion by 2017 Says Latest Report“, and Jeanne checked her news alerts before I did, and had something to say about it:

Yet another “endometriosis pipeline assessment & market forecast” has been released. Who is looking out for the endometriosis patients in this world of people trying to make money off the backs of endometriosis patients? With 89 million endometriosis patients worldwide, I wish I knew of an endometriosis organization that had my back. Sadly, I don’t feel there is an organization that fits this description.

I took the discussion to my facebook page, where I had an exchange with my friend D.

D: _everyone_ who has a chronic illness is seen by big pharma as a revenue stream. I know this for a horrible fact.

Steph: yes, it is true. Jeanne touched on that in her article, as she has multiple chronic illnesses.
There’s just this wave of people cheering on endo organisations and doctors, without really doing background checks so to speak, and so her article is a wake-up call for people.

D: to expand, I can’t speak to the subject of nonprofit interaction with patients and profit, but from where I’m sitting (…the corporate “for profit” managed care industry…) there is a definite emphasis on “managed care” and specifically not on curing anything. The people running these companies would never outright SAY it, but they have a vested interest in making sure people stay sick, and stay dependent. Cures for ANY of the big life-changing-but-manageable illnesses (Diabetes, Endo, take your pick, theres lots more) would instantly dissolve multibillion dollar businesses PER DISEASE. You can be damn sure the companies running those businesses don’t want that to happen.

I’m not usually one for tinfoil hats, but in this instance, it’s really really hard not to wear one.

D: The magic words are “cure” vs. “managed care”. If you see “managed care” the likelihood is that money comes before wellness.

Of course, if you see “cure” first, then it’s just as likely they won’t have a dime to their names to do the research with…yay American medecine.

Steph: this is why whenever I see anything for my illness and my father-in-law’s illness advertised or discussed from A Certain Corporation, I roll my eyes. I know for damned sure they don’t give a rat’s ass about us getting better.

In fact, the stuff touted for endo care from A Certain Corporation, as well as any private, public, for profit or not for profit joint at this point so far has only been full of people who lie, cheat and steal at our expense, with drugs that only hurt us worse, not help us.

This INCLUDES the biotech firms doing DNA studies on us - they SAY they are doing this for a cure, but you read their quarterly earnings reports or studies published in medical journals (I’m subscribed to several) and all you see is language indicating they want to be FIRST to use the DNA studies to create a new DRUG THERAPY, not a f***ing cure.

There’s two endo orgs slinging mud as we speak, because one got all pissy that the other was first in publishing data. So the other went and did a smear campaign on the integrity of the data. It’s ugly business being so charitable towards us poor, helpless little females with endometriosis.

Then there’s the doctors, who sit on the technical advisory boards for several competing organisations and biotech firms at once.
Hello, conflict of interest? Hello lining your pockets, much?

Lastly, there’s the butchers, making money off of maiming us further (*cough*nezhat *choke*metzger *ahem*there’s more).

It’s slow work, but I’ve got a database going on ALL of these choads.

You are most certainly justified in the tinfoil hat.

Be sure to check out Jeanne’s article, titled “Endometriosis Patients Viewed As Cash Cows?”

If I wasn’t already bitter enough, I went searching for images of a retroverted uterus, because I’m wondering if half the clotting that happens during menstruation is due to the retroverted state of my uterus. While searching the interwebs, I happened across The Household Physician website, which shows the following treatment for a retroverted uterus:

Click to enlarge, and note how the caption specifically says that AIR will hold the uterus in place until a pessary can be placed.
The website of course offered no dating of the material which it espouses, so I did some digging and found the original work over on Google Books, by the same title; The Household Physician

This book was published in 1895. It is important to note that 115 years later, pessaries are *still* being used to “treat” a retroverted uterus.

I guess I should be thankful that leeches are no longer being used.

 
I’m going to ask if it is possible for my surgeon to surgically correct my retroverted uterus during the laparoscopy.

But honestly, you’d think that in 115 years, the medical establishment would figure out how to help instead of torture women. We remain second class citizens (or worse in some parts of the world) as far as health care goes.

And that is my bitter rant today.

My period came yesterday and I’ve been home and bedridden ever since. On top of it, last night my neck/shoulder went out because I slept wrong. I wanted my husband to stay home with me today but he wouldn’t. I hitched a ride to the doctor via my neighbor and got some muscle relaxers. I took a whole Tylenol 3 and shuffled home because I did not have exact change for the bus and can never remember how much it is, anyway. It is a 0.4 mile walk, but a bit harrowing when in pelvic pain and trapped nerve pain in the neck/shoulder.

The thing I’ve been saying to my husband since last night is that I just want to be put out of my misery. I told him repeatedly that I need a caregiver, but he needs an equal partner. I told him for that reason, the marriage probably isn’t working out in his favour. He insists he wants to keep me around, but I don’t see the point. I don’t want to be disabled. I don’t want to be needy. My body is broken and has other plans for me.
He won’t take me out back and put me down, though. I told him he’s selfish for that.

Then again, I’m selfish for wanting him to do the deed. But I won’t do it, myself. I told him it’s a really good thing I’m seeing a psychiatrist, today, because between the trapped nerve in the neck and the ongoing/worsening endometriosis pain alone, I NEED the psychiatric help right now.

My psychologist has ideas about what my diagnosis is, but I’m going to wait til the psychiatrist has also evaluated me before I start educating myself on how to care for myself with yet another diagnosis.

And a large part of me wonders why I keep seeing specialists for all these problems. It does nothing but take my money and insurance, and makes me miss more work because of the appointments, and none of this has actually HELPED or CURED me, anyway. I should just go on like all the other broken people in the world, until I decide like a lot of them that I’m DONE and just hit the reset button on my own, in peace.

On Friday, September 10th, I started feeling low pelvic discomfort/fullness. I had the need to ‘check’ myself all day to see if menstruation had begun.

Saturday morning, my husband and I were intimate, and I experienced pain as I often do. :( I noticed bright red bleeding right afterwards. I assumed this was just the little pool of blood that sometimes leaks out from the cervix and sits at the end of the vaginal canal right before menstruation begins. Within half an hour of intimacy, I experienced uterine cramps which lasted all day. However, as I had hoped, the bleeding turned to spotting quickly enough, and then stopped by afternoon. For the pain, I took 600mg Ibuprofen in the late morning, then took half a Tylenol 3 and more Ibuprofen in the late afternoon.
My husband and I went to a housewarming party that night, and I brought my heating pad with me. I did need it. :( I took another half a Tylenol 3 around 9:45pm, and got all the codeine effects - dizziness, fuzzy-headed, super sleepy, heightened sensitivity to light and noise, etc. Those things don’t mix well with a very alcohol-ladden house party. We were home a few minutes before midnight…on a Saturday night…because of my pain. LAME.

The night out, despite the pain, was not too bad. I had my usual bout of social anxiety, and I was a bad girl and took a few sips of whiskey (it had honey it it, how could I not?). As we were saying we wanted to leave, the hostess said she needed to re-introduce me to a friend of hers, who also has endometriosis.

So I talked with another endo sister and stayed awhile longer at the party. ;)
She highly recommends Dr. Cook down in Los Gatos. He’s the guy who only accepts one’s money, not insurance, but the woman I talked to last night is three years post op and says the pain has not returned. She had stage IV endometriosis, and had to have one ovary removed, as well as part of her vagina, her cervix and her uterus. She also had to have part of her bowels resected, because of the endometriosis. Really bad stuff. I asked a lot of questions about the one ovary thing - since I am convinced that I’ll have to lose my left ovary eventually (this is twice now that it’s been pulled by adhesions to my uterus).
She told me that because she had so much removed, her body freaked out. She told me that although the endometriosis pain disappeared, she had to contend with nerve damage on her bowels, and all of her organs trying one by one to shut down on her. She ended up with asthma and skin lesions and extreme fatigue and all sorts of stuff, which took over a year to clear up, and only with the help of some kind of metabolic therapy. She said she was dying a slow death. To this day, three years later, she still has issues with either keeping in or letting out a bowel movement, I forget which.
Despite such horrific issues, she says she’s glad she had the surgery.

My opinion is: given the choice between knowing the behaviour of my illness and not knowing if I will die from all the pain and suffering caused by a surgery such as described above, I will always choose my illness. Given the choice between a one year recovery and my current illness, I’ll take my current illness because I miss less time off work and thusly less money. Given the choice between possible permanent nerve damage from surgery and my current illness, I might prefer my current illness. Depends on where the nerve damage, is, I guess. I don’t think I would like to have to live with bladder or bowel control issues for the rest of my life. That stuff isn’t supposed to happen until I’m elderly. :p

For over a year now, I’ve been going on about needing excision laparoscopy to properly treat my pain, and now that I’ve talked to a woman in person who has had excision done, now I am chickening out. This is silly. I can easily get just as much nerve damage from electrocoagulation surgery as I can from excision surgery. Hell, I can get organ damage just from the laparoscope going into me. So this fear stuff needs to stop.

…there’s something else. When I did a search on my blog for how many times I mentioned ‘excision’, I read back through my entries and got really mad. You know, the human brain forgets things, and there’s something to be said about that. I feel like had I just left all those feelings forgotten, then I wouldn’t be so angry as I am right now with doctors who wrote me off, with all the time I waste trying to find the right specialist, only to be slapped in the face by people saying stuff like, “DO YOU LIKE BEING IN PAIN? THEN GO GET ANOTHER ELECTROCOAGULATION SURGERY” or “I TOLD YOU ABOUT THIS PERSON A YEAR AGO, WHY DIDN’T YOU LISTEN TO ME”.

If I hadn’t read through my old blog entries, then I might not be so mad as I am right now at my husband. But the thing is, forgetting also destines one to repeat history. And this is recent history - the blog entry I’m referring to is from February - only seven months ago. We’re in a cycle, and it does no good to keep forgetting that the finances issue is a HUGE issue. I DID go to school this summer after my husband insisted that I go, and insisted that our tax return money would cover it. When the tax return money ran out towards the end of the summer and my husband had to foot $1,000 more of his own money, all hell broke loose. We’re still reeling financially and emotionally, and then I get told I must have another surgery ASAP.

Back on February 4, I said I could EITHER have surgery OR go to school because we don’t have enough money to do both. This was before our tax return. Once we got the tax return filed on February 20, my husband said I should go back to school, and I agreed. We both thought at that point that surgery could wait.

Who knew that surgery would be deemed necessary the same year? There was no way of knowing that.

But the same frustrations I expressed about our finances are still at the forefront of our relationship today. We did have that talk back in February, and he did say that he would support and help me and that he would stop being wishy-washy. The one point we did not cover was him also promising not to be grudging or angry when I need money. He never made that promise and his behaviour is still that of grudgingly handing over money when I need it.

Last Wednesday, when I got the surgery summons, I told my husband we needed to talk about finances and planning for the surgery. Friday night, we had that talk. Once again, we got into our modes. He wanted to pledge chivalrous yet ambiguous support for me during and after my surgery. I wanted to run the numbers. I broke out the calculator and my recent timecard and compared it to my earnings before summertime to get an estimate of money that could be saved between now and December, while telling my husband about bills and groceries and things that would need to be taken care of. He sat there, eyes glazed over, zoned out, then began playing a video game on his iPhone.

While running the numbers on my end, and noting his lack of engagement after he initiated the talk, I kept working but did not look at him as I spoke, telling him, “Here’s what I need for you to be doing. I need you to go through your bills and expenses and the last three months of the grocery bills, and tell me roughly how much money you have at the end of the month each month, so that I know what you have to contribute towards the surgery, since you said you would in fact take care of me during and after surgery.”

He stopped playing his game, stared at me for a moment while I continued to work without looking at him. Then he got up in a huff and stomped off to the computer room to run his numbers in angry silence.

And this is how it always goes. He’s all talk and then when it comes time for action, he gets his panties in a twist.

He DID do his numbers and we DID compare things.

The end result of my own assessment was that I cannot afford to save money for surgery to cover the co-pay (up to $1,400 out of pocket) AND any post-op care, AND bills that will still be coming due after surgery while I’ve been off work without a paycheck.

My husband’s assessment showed that he was left with just over $200/mo out of his paycheck, if he had to continue to cover all of the groceries, cat maintenance, and all of my bills post op.
I asked if my husband could set aside money out of his paycheck every payday from now until mid-December in order to have that padding available - to cover all the expenses for up to 2 months post-op. He shared that he has about $1,476 left over after bills are paid each month. I asked if he could carve out $400/mo from now until mid-December (leaving him with $1,076 total in the bank each month, but saving $1,200 to cover me), since my bills due on top of everything else are about $316/mo ($632 if he had to cover me for 2 months).
He replied that he could logically swing it, but would feel uncomfortable doing so, in case other emergency expenses came up. He said it would be cutting it too close.
The end result of his assessment is that he cannot afford to save money now to cover me post-op in December.

This pushes my surgery out to either spring break, which is one week optional work in March, 2011 (holiday daycare week), or sometime in the summer 2011, which is a fixed amount each employee can work during the summer, anyway, due to low enrollment.

At first, I was silently very angry with my husband’s refusal to save $400/mo from now until December. But I calmed down and realised that yes, $1,076 really is in fact in the red for two people, should any tiny emergency crop up. It’s just not doable, and I have to accept that.

After doing our assessments on Friday night, I did not feel any better about how we both emotionally handle things related to finances. I still do not trust that my husband will make good on his word to be there for me. It’s all on me to save the money towards the surgery co-pay and taking care of myself after surgery. I have to start saving now.
When we got married, we agreed to keep finances separate. We only got the joint account to pool money for the honeymoon. That was the only reason we got that account. And even then it didn’t really work out so well - I still put a bunch of shit on my credit cards, and used my money, and he still used his money. The fact remains that he is very guarded over the ginormous amount of money he makes in a year, and is resentful that he has to foot all of the rent and groceries. He makes roughly sixty-five thousand dollars more than me each year, and so when he has to split his income in two to support both of us, he gets pissy.
I make sixty-five thousand dollars less than him each year, so when I easily run out of money and need something, I get all pissy when he won’t just provide the money. I don’t look at it as a spoiled princess or entitled bitch thing. I look at it as a fracking charity thing.

Another thing I found out from my assessment is that missing two or three days of work each month loses me roughly $4,000 every year at the current pay rate. At my highest earnings in the dotcom days, I was losing up to $7,200/year of my paycheck because of missing work due to endometriosis. I posted a study about this on the main Living With Endometriosis site back in April, 2010. My personal cost is much higher, but I don’t know if their costs were net pay or gross pay. My assessment was gross pay.

I still feel the same as I did back in February: “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.”

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

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

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

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

ANYWAY, so Phenergan is out.

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

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

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

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

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

So what does this mean?

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

Go me.

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

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