I Will Not Suffer In Silence

Time moves slowly at Kaiser Permanente.

5/21/2015 4:22 PM PDT
Hello Dr.Nguyen,

Days ago, my GYN said she would be in touch with you about a narcotic contract. I am a bit confused, but I think this means she is writing me off as to further refills from her department.

I have endometriosis with worsening symptoms. I requested an ultrasound, which discovered fibroids. This is a new development, and I believe is the source of my increased pain. However,my GYN is saying it is very minor.

I really need to find out who will continue filling my prescription to manage this pain. I am on my last Norco pills during this cycle, which has me home from work again, bedridden.

The next time this cycle is due to take me down is June 14, but I have been enduring midcycle cramping and bleeding since at least February, which is the whole reason why I requested the ultrasound in the first place. So it could be that I will need more Norco before June 14. I want to be prepared.

I await your prompt reply.

George arrived on May 20. I was off work as I mentioned, bedridden, on May 21.

And lo, in less than 24 hours, came a reply:

5/22/2015 12:19 PM PDT
Sorry to hear about your pain. I have emailed Dr Shankar and will follow up with you after I discuss with Dr Shankar. It would be a good idea to schedule follow up clinic visit with me anyways so we can discuss your medications for your pain, maybe sometime late next week (give me a chance to discuss with Dr Shankar plan of action for your chronic pelvic pain).

“Late next week”.
And I’m running out of pain medication, fast.

I returned to work on May 22 in level 7 pain. The pain continued to alternate between a 4 and a 7 on the pain scale throughout the weekend. Thankfully, I was off work for Memorial Day on May 25, because I spent the day in bed from continued pain, having to ration my medication.

Tuesday, May 26 found me completely pain-free. I was in a jovial mood all day. It had felt like I had endured a long, harsh winter, and that Spring had just sprung for me.

And then, the very next day, the cramping and bleeding returned. And it lasted for four days.
See, this is what I’ve been talking about. This is what has been so unusual. This is what prompted me to ask for an ultrasound. This is what ended up being a new diagnosis of fibroids. The latest ultrasound results came back proving the increased pain I’ve been in, as well as lengthened pain flare episodes (results came back showing fibroids). This also proved why I have been eating more Norco than I normally would for the past few months.

And yet, I’m being totally fucked around by the medical establishment, and denied my fucking medication.

Unfortunately, I was not able to score an appointment to see my primary doctor by May 28 or 29 as she had requested, and I completely ran out of pain medication, and suffered greatly as a result, because no one would fill a few pills for me to tide me through.

I got in to see the primary doc on June 1, when I again was pain-free.
There, I plead my case as to why I need medication over hormones and surgery. I also handed her a 4-page document on everything I’ve ever tried to manage endometriosis.

After begging Kaiser GYNs for 2 years to be put back on Tylenol 3 to manage the pain because I have side effects with Norco, and being denied, my primary doctor jumped at the opportunity to get me off of Norco and back onto Tylenol 3. She said it’s much more manageable to prescribe that one. Incredible. I can’t even.

And then, while I was still jaw-dropped over the pointless 2-year medication fight, the doctor said, “But I still need to put you on an opiate contract”.

Note that the language has changed from narcotic contract to opiate contract.

WHY, I asked. She said it’s still a controlled substance. But easier to deal with than Norco regarding red tape.

I looked over the wording of the contract, and then listened as my doctor rattled off the contents of the contract. The language is clear – I am a drug-seeker who has to be warned (twice) against getting combative with staff about meds, and who has to take regular pee tests to make sure I’m not taking any other opiates or narcotics, or illicit stuff. My doctor told me THREE TIMES how she had looked me up in the drug database to make sure I was not going to several doctors to get the same meds prescribed, and she DELIGHTED in scoring me on a risk assessment to be eligible for the medication contract (I scored a 2, whereas 4+ is denied a contract).

She told me that the pee tests are random and at any moment, I could be summoned away from work to have to do one, lest I get dropped from the contract. Interference with my life and career, much? Playing ball, much?

I took the contract home and pondered it before signing.
I read it to my partner.

I cried. I felt trampled on. I felt abused by the medical establishment once again. Forced into playing ball once again.

The very next day, on June 2, I experienced intermittent level 6 pain, and described it as adhesions pulling from the inside. This lasted two days.

On June 5, I reported for my first pee test after work, and was told it would be a $45 co-pay next time and from then on.

To pee in a cup.

I exclaimed, “No thank you!” and was referred back to my workplace, since my health care is through the workplace.

I checked in with my workplace, who said their hands are tied.

I emailed my doctor, asking why I signed an opiate contract when Tylenol 3 is a narcotic, and I informed her that I cannot afford routine urinalysis fees.

She replied the same day, surprisingly. She wrote, “Codeine is an opiate and contract is still needed. For chronic opioid therapy we do urine testing twice a year.”

So I don’t get out of the damned $45 fee, but at least it’s only twice a year.

I’m still puzzled by the narcotic vs. opiate thing.

But now I have 30 Tylenol 3.

Good thing, because beginning on June 11, I experienced crushing fatigue and full body joint pain. Cramping began on June 12 and has not let up since, even though I have not yet started my period. After four days of this pain growing stronger, today I gave in and began taking half pills of the Tylenol 3, on top of the 2,000mg of Ibuprofen I’ve been consuming for the past week.

On top of the medications, I’m still taking Probiotics, Evening Primrose Oil, Vitamin C, Iron, Magnesium (for restless leg syndrome, which plagues me ever since being on Gabapentin), cramp bark and other crap.

The pain today has been the worst in the past 5 days. I’ve been at a level 6 all day, with shooting pain from my lower back down my left outside leg, cramping into my left thigh.

I hate living this way.

At this point, why do I bother continuing to go to the doctor, especially now that I’m stuck with Kaiser HMO insurance.

Firstly, let me tell you the difference between HMO and PPO insurance in the United States:
HMO (Health Maintenance Organization) is cheap-o basic health care coverage, with the main goal of being a preventative health care system. That is to say, they don’t want you to get sick. Patients must have a Primary Care Physician, who is in control of referring the patient to specialists as he/she sees fit.

PPO (Preferred Provider Organization) is pricey-yet-comprehensive health care coverage, with the selling point being to manage long-term illnesses and conditions. Patients can self-refer to specialists.

Now, here’s what’s going on with me:
Yesterday and today, I had debilitating fatigue.
Last night, my period started up again after I thought I was finished and was barely spotting. After intimacy last night, I noticed bright red spotting.
This morning, I woke to bright red flow.

I have a rapport with my boss, whose daughter also has endometriosis. When I told her what was going on, and that I’d be dashing off to an appointment after work, she told me that she remembered this happening to me before. I told her I did not recall, but I do have excellent record-keeping on my computer. We talked about whether I could be perimenopausal or not. More on this convo later.

So I called Kaiser to make an appointment.

The person I got on the phone told me she also has endometriosis, and immediately I rolled my eyes, because I knew what would happen next. She asked me if I’d tried hormonal treatments. I told her no, and she launched into the whole, “well, you know that hormonal suppression is one way to stop the pain…” So I told her I tried hormones and they made me suicidal, so I refused to try further hormonal experimentation. She then asked about Lupron. NO, I have not tried it. She then asked me if I’d considered hysterectomy. Yes, I have, and I have decided against it. She then had the audacity to ask me if I had been surgically diagnosed with endometriosis. YES, I HAVE. TWICE.

Here’s the thing. I’m trying to make a fucking appointment with a GYN TODAY. That’s all. Just do your job as customer service intake or whatever the hell your job is, and find me a fucking appointment.

This woman doesn’t have any right to be asking me these questions. The only questions she should be asking me are the ones on her fucking script, which are:

• When was the first day of your last period?
• Are you experiencing any pain and where?
• Are you experiencing nausea or vomiting?
• What have you taken for the pain today?
• Do you think you could be pregnant?

 
Based upon the answers I give, she enters the responses into her computer, and it tells her whether I am eligible for an appointment TODAY.

All these other questions, I know she’s only asking because 1) she has endometriosis 2) she is a nurse, so she thinks she knows better than I do about myself, so 3) she feels entitled to give me a what-for.

Here’s a tip: just because you have the same illness as me, bitch, doesn’t mean you get to tell me what is best for me.

No, I have not tried Lupron. No I have not opted for hysterectomy. Yes, I have been surgically diagnosed and don’t fucking patronize me when I tell you I’ve had two surgeries and you say “yes, but where they diagnostic?” What the hell kind of question is that? Yes, of fucking course they were diagnostic.

There is a rampant mentality among women with endometriosis: many of these women tell other women that if they are not surgically diagnosed, then they have no right to complain about the pain of endometriosis, because it might not be endo. It’s like a fucking sorority club: you don’t get to talk about your pain unless OFFICIALLY diagnosed with endo. Then POOF! You’re in the clique. You get full title to wail and gnash your teeth about your pain, AND BE BELIEVED by the endo sister community. That is some serious bullshit right there.

I remember being belittled like that. I knew I had Endo, but I still had to fight for 11 years to get it proven surgically. Now that I’m diagnosed, I have to always be ready to show my fucking papers whenever the medical community or SOME women with endo ask me if I REALLY have endo. YES BITCHES, I DO.

And you’d think my bad experience would have ended there – that was just the nurse line to get an appointment for today. Oh no, it got worse.

My assigned GYN is not in the office until Monday, so they just gave me the first available doctor for the time frame I could manage. When I got to my appointment, I was a little miffed that nobody told me that my gynecologist for today would be male. Apparently there is no communication between the intake nurse and the GYN on staff, or else he can’t be arsed to read the intake report before seeing his patients. He asked me the same questions. When I told him no I have not had Lupron, he said “Why not?” in a patronizing voice. I told him with pursed lips, “because it’s my decision”.
I am tired of explaining to these motherfuckers the multitude of problems associated with going on Lupron.
Lupron is a male prostate cancer drug being used on women when doctors don’t know what the fuck else to do. We get bone loss, we get deepening voices and hair on our chests and faces. We get worsening pain. We get permanent debilitating joint pain.
I am not going to be your fucking guinea pig to end up with even worse problems than I am already dealing with. And yet, these motherfuckers keep pushing the goddamn Lupron on us!

But no, all I tell this doctor is, “because it’s my decision”. You are lucky I spared your fucking head today, sir.

He thinks out loud: I could be perimenopausal. He might recommend an endometrial biopsy.
He opted to do a pelvic exam, which I granted. He told me I am not currently bleeding, which is a pile of shit. He pulled out the speculum and told me that there is barely any blood on it. I told him I have been bleeding bright red all day, so if he is unsure, he can wait…there’ll be more. He inserted his fingers and asked me where I felt any discomfort, pressure or outright pain. He described my bladder and I told him it was uncomfortable, bordering on painful. He then told me that he really doesn’t see a problem internally as far as endo goes, but the bladder sensitivity could be something else. I know what this means and NO, I DO NOT HAVE A URINARY TRACT INFECTION. I’ll bitch more about that in a minute.

When he was finished, it appeared as though he was wrapping up our little visit. Oh hell no.
I told him, “This is what I would like you to do. I would like a transvaginal ultrasound ordered.” He looked startled, and said, “ordered?” I replied, “given” as I pointed to myself still in stirrups.
He paused, then told me he was just about to go ahead with that, and he seemed miffed that I would demand something from him. Oh REALLY? I thought you were dismissing me like everyone else. HMO doctors are hateful little creatures.

During this whole visit, his minion kept coming into the room without warning, which invades my privacy as I lay there in stirrups. He sent her out to get the ultrasound equipment as I scrambled to cover myself back up again. She rushed back in and didn’t even close the door as they began setting up for the ultrasound. I stared at her and then finally said, “Close the door.” Both she and the doctor looked at me, then the doctor gave her an impatient look and repeated for her to close the door.
At this point, I was about to lose my shit and set these people on fire.
But I needed answers, so I allowed the ultrasound to begin.

He had a look at my right ovary, which showed a very large black hole. I asked him what it is. “It measures half an inch”, he said. That’s about 1.5cm.

I then told him that I have a history of endometriomas. He replied that it looks like just a follicle to him, but he will mark it. Good. You do that.

At the end of the ultrasound, he reiterated that he does not think anything is wrong “other than normal cramps, not endometriosis pain”.

At this point I could no longer hold back my judgmental glare.
I am surgically diagnosed with endometriosis, and you are telling me that I don’t have endometriosis pain, just normal cramps? WHAT. THE ACTUAL FUCK. IS WRONG. WITH YOU.

But it doesn’t end there.

He then asked me something I knew he was going to ask, because I have had this fucking question asked many times previous to my surgeries.

“Are you sure it’s not a UTI?”

I gave him The Teacher Look.

I told him evenly and firmly, “it’s not”, at which point he put his tail between his legs, and literally held up his palms to me to let me know that I got my point across. He then said he’s not very well versed in knowledge of endometriosis (OH REALLY), and he even went so far as to acknowledge that I might know more than he does on the subject, to which I openly replied, “I do.”

What I don’t have to tell you motherfucker, since you were not interested in reading my surgery reports, is that I have endometriosis on the bladder reflection, which means my bladder is easily irritated when you poke at it with your fingers or with the vaginal ultrasound wand.
So, you might want to check the fucking surgery report before asking me if I have a fucking UTI.

At this point, I was expecting him to ask me another common question:

“Have you ever had an STD?”
If he had asked me that question, I would have leapt up off of the table and murdered him outright.

Instead, he mentioned offhandedly something nearly as infuriating:
He said I should really consider hysterectomy, or pray that menopause does not give me worse problems than the endo already does, because I have refused hormonal treatments, Lupron, and hysterectomy…and opted to just stick with narcotic pain management, which is frowned upon.

TRANSLATION: YOU ARE AN ADDICT.

In general, I am really tired of doctors. I’d really like for that pain transference device to be invented, so I can show these asswipes A DAY IN THE LIFE OF A WOMAN WITH ENDOMETRIOSIS.
And when they are screaming in agony, or literally dying from this pain, I will tell them all of the things they have told me and my endo sisters throughout the years.

I really miss UCSF. I fucking hate Kaiser, I hate starting over, I hate HMOs. The whole reason I am stuck in Third World Healthcare again is because my excellent medical benefits went out the window when my ex-spouse cheated on me and divorced me for the whore.

Now, I have Kaiser through my workplace, which as I mentioned is HMO hell. The exam room I was in today was behind office desks at the back of the building, in what looks like used to be a closet. The furniture in there looked to be at least 25 years old, badly scratched up and in need of paint. Actually, that furniture reminds me of the office furniture aboard the USS Hornet… A WWII vessel.
I would say that the health care provided by Kaiser is roughly similar to WWII healthcare.

Have I mentioned that I miss UCSF?

When I got home, I remembered the convo I’d had with my boss earlier in the day, and so I scoured through my iCal and photos of my whiteboard calendar to see if I could find any easy reference to this in the last few years. I check out my calendar notes first, before going meticulously through my blog entries, because I don’t always know what keywords to look for at first. Looking at patterns in my cycle via the calendar gives faster insight for me, oftentimes.

I finally found it – it was just 11 months ago – my boss was right – this has happened before. In May of 2014, my period stopped and then a day later started up again. I went to Kaiser and got a same-day appointment (at the time, with a new GYN since I was new to Kaiser). A transvaginal ultrasound revealed a 4cm fluid-filled sac. I was in even more pain last year than what I’m going through this year, and of course I was… last year it was a 1.5 inch cyst. This year, it’s a half-inch cyst. Either way, it causes me to bleed outside of my usual cycle.

So I have my answer, and I have a pending complaint against one Dr. Hong Kim, and a further complaint against the Kaiser healthcare system for letting me fall between the cracks when my regularly appointed GYN is out of the office.

And as far as cysts go, all I can do is Wait And See.
Will it reabsorb? Or is it an endometrioma?

And then I’ll take it from there…by going to see Dr. Andrew Cook down in the South Bay. He doesn’t take insurance – it’s out-of-pocket. After all I’ve been through, I’m ready to go this route.

Today I threw up from the pain. My period arrived yesterday after a 34-day hiatus.

My last post was May 7, where I was dumbfounded by an extension of my period, which was alarmingly odd. That pain and bleeding lasted until May 13. I then experienced days of no pain, days of some pain, off and on like that through to the end of the month. I thought my next period was due May 24, but that date came and went with no sign of george.

Then he arrived yesterday as I mentioned above. Obviously the endometrioma is wreaking havoc inside of me.

Yesterday and last night, I had moderate pain. It was manageable, though. This morning, as I was leaving the house for work, the pain suddenly shot up to a 7 on the pain scale. It happened right after I had to swerve and honk the car horn to avoid an asshole trying to run a stop sign. That minor adrenaline rush was all it took to set the pain in motion.
I had to turn around only a block from my home, drive back home, take some Tylenol 3 and put on a heating pad, and then try again to get to work. I was about 10 minutes late to work. I popped 800mg Ibuprofen and tried to go about my day, but the pain just kept getting worse throughout the day.

I took another half Tylenol 3 just before lunch time to no avail. I then popped 800mg more of Ibuprofen after lunch. I thought getting to 8 on the pain scale by lunch time was going to be my worst, but no… the pain got to 8.5 while I was in a head teacher meeting around 4pm, and was accompanied by a horrible headache. I tried to leave immediately after the meeting, but ran back inside the building to vomit. Yes, I vomited because the pain was so bad. I haven’t done that in a long time.

I got home and just like that, the headache subsided, as did the pain. I’m seriously exhausted from the trauma of it all, so I took a nap for an hour, only waking up because of the pressure on my bladder from all the buildup of menstrual fluid.

As soon as I used the bathroom, WOOSH the pain level shot up again and the headache returned. I just took a whole Tylenol 3.

Please kill me now.

I had a moment of panic in the bathroom today at work, when I discovered I’d started bleeding heavier than yesterday.

My period was supposed to be done last Sunday, but I started spotting bright red again yesterday.

Today, the blood was dark brown with debris – the so-called ‘coffee ground’ blood. At this point, I finally acknowledged consciously that something is wrong. I suspected once again that I’m dealing with an ovarian cyst. This is something that, in the past few months, I’ve given brief attention to, but pushed it out of my head. Today, I was forced to acknowledge it as fact.

So I looked back in time and realised that this endometrioma or cyst has been in the works for the past six months – since probably November, 2013.

Nov. 4, 2013: 5 waves of intense pain – 7 on the pain scale. Nausea with evening pain flare. Took half a vicoprofen.

Dec. 1, 2013: Nausea, extreme fatigue, shakey legs. Mild to moderate pain. Dark brown flow, turning to red.

Dec. 29, 2013: Bedridden. Puked from pain. 8.5 on pain scale.

Jan. 21, 2014: Moderate uterine and ovarian pain.

Jan. 22, 2014: Moderate bleeding and cramps. Severely fatigued all day, w/ fatigue lasting through Jan. 24.

Feb. 16, 2014: Debilitating pain. Did not note whether mostly ovarian or low back. Bedridden for part of the day on the 17th.

On May 2, 2014 the pain ebbed and flowed. I felt better after work, but then on the way home from hanging with friends, I was crying from the pain, which was mostly on the left side, radiating down my left leg.

May 3: intermittent moderate pain, especially in the lower back.

May 4: Low back pain mainly, but also stabbing on both the left and right side ovaries. The bleeding was subsiding, so I thought I was done with my cycle. That night, the pain cranked up to a 7.5 on the pain scale, and I laid on the floor on my back, crying, while my S.O. looked on helplessly.

May 5: pain and bleeding subsiding.

May 6: my entire back was locking up at the end of the work day. Then shooting pains down side of left leg, then right leg, then pelvic. I started bleeding bright red again.

May 7: ‘coffee ground’ discharge – a mixture of new and old blood, so much that I thought I started my period again. As the day wore on, I got more locked up in the pelvic and low back region again. I had to take 600mg Advil, then half a Norco, by 12pm.

My S.O. convinced me to see a GYN TODAY, so I called and got an appointment.

At the doctor’s office, I got a transvaginal ultrasound done (I’m a serious veteran of that wand, now). This ultrasound revealed a 4cm fluid-filled sac on my left ovary. The GYN also noticed a dark spot at back of my uterus; she said it could be the left ovary attached at back of uterus. I had her look at my previous surgery reports. She thinks it is most likely adhesions pulling the left ovary to back of uterus once again, and that I have either a large cyst or an endometrioma on the left ovary.
However, she urged me to go to ER for a doppler ultrasound and a uterine biopsy, because she is concerned about torsion, which can be dangerous, and she is concerned that the cyst is 4cm in size, which is the threshold where doctors get freaked out about cancer.

However, I am going to wait on it, based upon previous experience w/ cysts and endometriomas.
(See http://www.livingwithendometriosis.org/steph/2008/11/status-on-ovarian-cyst/
and
http://www.livingwithendometriosis.org/steph/category/ovarian-cysts/)

I also told the doctor I’m not comfortable going to E.R. because of an incident once where I went to the E.R. and instead of listening to me and reading my surgery reports, and just making me comfortable with an IV of drugs, they made me wait the pain out, then forced a pelvic exam, stirring up the bees nest again.

Today’s GYN doctor said that as a patient, I have the right to refuse a pelvic exam and ask only for the doppler ultrasound. She says I can request that first and then opt to have a pelvic afterwards, if something significant is found on ultrasound.

Just to make her stop trying to sway me, I did promise the GYN that if the pain gets any worse, I will go to the E.R. and request the doppler ultrasound.

I am feeling very defeated today at today’s news.

Not a day goes by where I don’t curse myself for not sticking to a caffeine-free and sugar-free diet since my last surgery in 2010. I have been able to successfully cut out red meat and pork, but the other two are just too much to ask for, apparently.
I also know that I cannot blame my diet alone on my pain. I know full well that I have abnormalities on chromosomes 1, 7, 9 and 12, and that endometriosis has been with me since I was created. I know this. I know that diet alone is not going to stop the pain. So I need to have a happy medium – not feel guilty about ingesting caffeine and sugar, but not going hog-wild with the two, either.

But cysts and endometriomas will still happen to me. It’s the nature of endometriosis in general, and specifically the nature of how endo affects MY body.

I’m just tired. I’ve been battling this goddamned illness for 29 YEARS.
I’ve had two surgeries. I don’t want any more surgeries. I know of women who have had over 20 surgeries and they’re STILL not any better. In fact, some are worse off! So I don’t want any further surgery. I just want to try to make it to and through menopause, and see if that burns the disease out.

But dear gods, I am so, so tired.

Well here we are a full month later, and George decided to psych me out. He showed up a week ago only for one big splotch, and then left again for a whole week. He showed up again last night around four in the morning, and has gained in flow ever since.

I have consumed 1,200mg of ibuprofen today, and I worry that the pain will continue to increase. Right now, the pain is about a five on the scale. Between five and six.

Regarding the drinking, I inadvertently became completely sober this week, when I was assigned a new medication to take in dealing with the depression. I am now on Wellbutrin, and any drinking on it threatens to give me seizures amongst other horrible things. One of my friends have confirmed that Wellbutrin is a nasty thing to take with alcohol. So that is one less thing I have in my life for now to make the pain worse with Endo. I just have to watch out for eating sugar and caffeine has the other culprits.

The depression has been ever constant, and I am quite sick of it. I am hoping that the new medicine I am on well finally get me back on track with my life. I’m on four different medications now just to make my life right again. I’ll never forgive that sonofabitch for what he did.

Going back to my symptoms for moment. I have had heavy fatigue since yesterday actually, since Saturday. I slept through Saturday again. Part of it as depression, and part of it is being close to that Indo flare. I’m still able to go to work, as long as I hop myself up on ibuprofen.

This month was a blue moon month, and also a blue cycle month. Two full moons and two cycles in one month. My friend Kristine calls my period my Wolf Time, since my periods seem to happen around the time of the full moon. ;)

This cycle began last night in the middle of the night. For a day or two prior, my body felt heavy and I was out of breath easier. I had very mild twinges of cramping, especially on Saturday. The PMS cravings were on the increase this month, a full week before my period.

This cycle is painful – I’m guessing a 7 on the pain scale. It got to be enough that I got nauseous this morning, whimpered in pain or cried out throughout the day, and finally dug into my old medicine stash of Vicoprofen.
Now I’m happily dissociated from the pain, but I’m bleeding heavily and have to go to the bathroom often.

While I’m sad to miss the Labor Day weekend’s events because of the pain, I’m happy that the worst of my pain will hopefully happen while I’m off work for the holiday, so I don’t have to miss any work.

I think my pain level is increased this month because I’ve been drinking a lot of alcohol this month. I’m still going through major depression in the wake of the divorce. Even though the divorce was final on July 5, 2013, I’m still a bit of a basketcase over it.

Today I spent the day sleeping; on the couch and in my bed. I used the heating pad all day. Right now I’m going back and forth between writing this entry, watching Ghost Hunters and watching Sleepy Hollow. I can’t seem to focus on any one thing for too long. I blame the vicoprofen. ;)

So it’s been another 30 days, and george decided to show up yesterday. I’ve got my calendar set to 30 day cycles, now. Better than the freak accident of last month, when he showed up at the 19-day mark.

Today is Day 2 and is a bit heavier than yesterday. I went through 4 pads today.

Starting yesterday, I was depressed because I am easily out of breath, heavily fatigued, and in general bloated. This is so not the right time to pick back up on the exercise regimen, but the mental bashing happens every month around the time of my period – guilty at not having spent 3-4 weeks of uptime as a gym rat, working out and getting beefcakey. BAH. Whatever. I’m tired of the self-inflicted guilt trips already.

I’m tired – so tired. I had an asthma attack today – first one in many months – don’t know if it was brought on by weekend campfire, cleaning the tub last night with Tilex, or getting an email from my ex husband asking for his ring back (which sent me into a rage). The wheezing definitely does not help the already feeling out of breath issue. meh.

I have consumed 1,600mg of Advil to quell the pain today, and I used my rice heating pad at work. I have already added 100mg of gabapentin daily to make 300mg/day while in the endo flare. I hope I am not in any more pain tomorrow than I was in today. If I start missing work again, this will pile more guilt and fear on me, since I’m supposed to take a head teaching position come end of August.

Ugh. I can feel it – it’s getting heavier. I’m going to bed.

I continue to marvel at the lack of being bedridden since starting on Gabapentin.

My most recent endo pain flare began last week, with intermittent stinging pain in the uterus and left ovary, which lasted for a couple of days.

Then, without warning, george showed up yesterday, a day earlier than I expected. Then the crushing fatigue set in.

I consumed 1,200mg of Ibuprofen yesterday, and another 1,200mg today, and managed to get through the work day. I have gone to bed early for the past two nights – I’m in bed now and will be heading to sleep very soon. The full body fatigue is as I said crushing, and it is a symptom of endometriosis.

Ya know, I have a rant.

One of the big things my ex told me he was leaving me for was because “you have a need to let people know you’re in pain, all the time.”
He was referring to me posting when I’m having an endo flare, about me having specific friends who also suffer with endo whom I can relate with, and my ongoing endo blog.

What also really pisses me off is… had I listened to my doctor years ago, and started taking Gabapentin, I might not have been in this divorce boat, because I’d not be bedridden and therefore not such an invalid in my husband’s eyes.

I have suffered shaming and guilt all of my life – first through my parents, then with the endo, and now with my ex. Part of my rage is because he shamed me by having not just an affair, but holding it in my face, in the clubs, for my friends to see and ask me about. He lied to me when questioned. He lied for months until he got sloppy. And then he cites one of the reasons for leaving me was that he doesn’t like me being vocal about my illness.

So instead of being shamed to silence, I will remind the world of my blog’s name: I WILL NOT SUFFER IN SILENCE.

More to the point, I will react like O Ren Ishii upon one’s attempt to shame me into silence.
He got publicly castrated and financially burdened.

I had a lot of pre-george pain this cycle, to the point where I was taking over 1,000mg of ibuprofen to get through the day.

I had intermittent right side ovarian stabbing pains all day on Tuesday, January 24.

On Wednesday evening, January 25, I got a sudden droning headache, shivers, 
G.I. issues, crushing fatigue, runny nose. But because I have allergies, it could EITHER have been a food reaction OR a virus.
 People are dropping like flies at work from the stomach flu and bronchitis.
Interesting to note; the crushing fatigue started before dinner. Everything else began during dinner.
So was it a combo of PMS and fighting off a virus, PMS and food reaction, or just PMS?

On Thursday, January 26, I woke feeling much better. However, by afternoon that day, I had the distinct feeling of adhesions pulling deep inside my abdomen. I forget what side; I want to say it was the right side. I had forgotten to record it til Sunday in my calendar. According to facebook, I ate 1,200mg Advil to get through the day on Thursday.

On Friday, I was so busy that I don’t remember if I was having intermittent cramping. It was daycare day at school, and parent/teacher conferences were happening. I was floating from the preschool yard to the elementary yard to parent conferences all day long. Then I picked up one of my students after work and babysat him and his brother til 9:30pm that night.

The next day, on Saturday, January 28, I experienced mild uterine cramping. I chose to drink with friends rather than take any pain meds, because it was an all-day birthday gathering for one of my friends. I wasn’t ready to admit downtime was coming for me. I still wanted to play. I never got drunk that day, but I did have five drinks over the course of about 7 hours. I paced each drink and also consumed water.

I was not hungover on Sunday – like I said, I never got drunk. Sunday however was brutal. I experienced moderate uterine fullness and soreness, and spent the entire day on the couch near tears from the pain. My entire lower back was on fire, and deep inside my pelvis there was a volcano of death brewing. 

I took 800mg Advil, half a Tylenol 3, stretched slowly in doorways, used my TheraCane on the lower back, and used heating pads. I was close to having an emotional meltdown, because my period hadn’t even started, and yet I was in so much pain. Later, I dug into the Tylenol 3, which helped, so I took half pills of that for the rest of the day.

I had 15 pain-free days in January (non-consecutive). The good news though is that nine of those 15 were consecutive.

George arrived on time on Monday, January 30. I’d like to note that January is a “Blue Moon” menstrual month for me, since I got george twice (January 5 and January 30).

Sunday night I had gone to bed nauseous and expecting to get george during the night. Thankfully, I awoke on Monday with minimal pain and no nausea, so I went in to work. Of course, by the time I was leaving for work, the pain and nausea set back in. I was able to make it through the day on 1,100mg of Advil, a hamster bladder, and some whining.

On Tuesday, January 31, I wrote in facebook:
“So is it bad that I’ve been sitting here for the past 43 minutes, waiting for the pain to stop so I can eat food and get ready to go to work?

I guess the 800mg of Advil for breakfast so far didn’t do the trick.

I have 30 minutes before I have to leave for work, but I need to make the judgement call in the next 10 minutes in order to attempt to find substitutes for the day.”

Just under an hour later, I wrote, “Can’t find substitute – still short-staffed. Going in with heating pads strapped to my body like incendiary devices. Hoping for the best. I may very likely have to take a half of a Tylenol 3 on the job just to get through.”

I tried 800mg Advil, then 3 hours later I took 600mg more Advil to no avail, then a protein bar and half Tylenol 3. Finally, the extended care supervisor found some staff to juggle, and gently pushed me out the door around 11:20am. She’s super empathetic and in general awesome that way.

The pain hovered between 6.5 and 7.5 on the pain scale all day and all evening. I saw that I still had some Vicoprofen in the medicine cabinet, so I decided to give it a try again, since the Tylenol 3 didn’t appear to be dulling the pain enough for me. I took half a Vicoprofen and half a Robaxin muscle relaxer I also had left in the cabinet. The pain during this cycle has been centered low on the uterus and pressing into the bowels through the anus. It’s enough to make me whine and cry like a three-year-old. It’s been REALLY brutal.
Tuesday night, I was in bed before 9pm because of the strength of the medications I had taken.

In the middle of the night (3am), I woke from a crazy dream in time to find myself bleeding through my bedclothes. George had circumvented the thick overnight pad and went through my underwear and pajama bottoms to the bed. I had to change my clothes but was not about to change the bedsheets at three in the morning! Thankfully the bed wasn’t a disaster.
Wednesday morning, I awoke with heavy flow, nausea and grinding uterine pain. Thankfully, the woman I had asked the night before to sub got back to me and said she would come in. I took another half vicoprofen and half robaxin pill. Within 20 minutes, maybe less, I was higher than a kite, so I went back to bed. I was fine as long as I was bedridden. If I tried to get up, I was super dizzy and cranky from the medication.

The pain hit me again four hours later, so around 10:30am I took a half vicoprofen and half robaxin. Once again, it took roughly 20 minutes and I was higher than a kite from the meds. This time, however, I decided I was just DONE being so stoned. I was done being bedridden, and now I was depressed over it, because I couldn’t just stop being high. And besides, the pain was leaking through the meds – just as it had done with the Tylenol 3.

That’s when my memory kicked in – didn’t I have a problem with vicoprofen in the past? I turned to my own journal, knowing full well I’d find out that I had a big problem with vicoprofen. OH LOOK, THERE IT IS…
http://www.livingwithendometriosis.org/steph/2009/10/vicoprofen-review/

And so I spent much of the day stoned – trying to leech the meds out of my system. I took only Advil for the rest of the day and the pain crept back in, but I was adamant that I did not want to take any more opiates or narcotics til the bleariness of the vicoprofen wore off. And here I am, at 6:15pm, STILL FUZZY from that shit!!!

All I can do is smack my forehead and label the bottle THIS WILL KILL YOU or some other means of avoidance. I don’t want to throw the stuff away, because in case of emergency, I’d rather have something in the house.

Now…going back to the end-of-January pain cycle. I was saying it was really painful pre-george.

My question is, am I having a bad pain cycle because of the stress at work during the last two weeks of January (parent observations, prep for report cards, and parent conferences)

OR

am I having a bad pain cycle because I chose to drink with friends two days before george was due?

OR

am I having a bad pain cycle because of BOTH the stress and the drinking?

OR

am I having a bad pain cycle for no reason other than It’s Just Endometriosis?

It’s my age-old question, steeped with guilt over the possibility that I am doing the wrong thing to bring more pain.

Whatever the reason or lack of reasoning, the fact is that in the new year, 13 months after surgery, I am still missing work and still on occasion bedridden from endometriosis.

I was bedridden one month after my surgery when the first real menstrual cycle hit. I was bedridden nine months after surgery.
I was bedridden 10 and 12 months after surgery.

The good news is that since my surgery in 2010, I was only bedridden for FOUR cycles, and only couch-ridden during TWO cycles out of 14 cycles total in the year 2011.
That’s much better than I was doing before surgery, where I was bedridden nearly every cycle of the year.

Doing the numbers helps me keep focus, helps me keep a semblance of morale up.

I’ll continue to track bedridden times through the year 2011 and see if I’m edging back towards pre-surgery illness. I’ll continue to tweak my diet, even though overall, dietary changes have not in my opinion shown vast improvement to the overall pain level during each cycle. If I don’t keep doing something to fight, then there’ll be no reason to fight, and the endo really will consume me.

My workplace, some friends and family, and total strangers will not see any improvement in my condition. I see little fluctuations that to me are major. I must continue to point them out so you can see how major in the scope of my illness these small changes are, and why I must keep fighting.

George arrived on Monday, September 26th. The pain was minimal and well managed with Ibuprofen, and I was able to work a full day.

However, Day 2 of my cycle had things ramping up considerably. I woke with moderate pain and bleeding, but still went to work because it was “parent observation week”, and my head teacher made it quite clear that she needed me there, and was not pleased that my health chose such an inopportune time to not be cooperative.

These are not her exact words, but damned near close. When I had given her a heads-up about my health the Friday before parent observation week that my next endo flare was due, her exact behaviour and words were to let out a tsk, a fed-up loud sigh, drop her shoulders and give a look of disdain as she exclaimed, “You’ve GOTTA be kidding me.”

She later apologised, but told me she was feeling overwhelmed/anxious at the prospect of anyone else being in the room with her that week, because the children would be more out of sorts with a substitute around, and she did not want the parents observing the children under those circumstances.

I understood where she was coming from, but I did not appreciate the giant guilt trip because of her anxieties. Her guilt trip is what led me to make the choice to be there to support her, thus pushing the limits of what my body could handle during an endometriosis flare.

So on the second day of parent observation week, I managed my pain with 1,600mg of ibuprofen. Here’s me first thing in the morning, popping 800mg of Ibuprofen in an attempt to get the pain under control (it worked):

Popping 800mg Ibuprofen before work

I stayed for the whole school day, more than fulfilling my obligation to my head teacher, since parent observation hours were over at 11am. However, there were resource classes that I needed to take the children to (library and computer class), so I stayed. Then there was naptime, so I stayed. At the end of the regular school day, before extended care started, I experienced a sudden flare of pain and sympyoms, right after consuming my last dose of meds.

Dammit, I tried to do overlap but the pain snuck in, anyway. My whole body went weak, and I got dizzy. It became hard to walk. I felt like lead for hours. This is ‘normal’ for endometriosis. The lead weight and crushing fatigue sucks. I know part of the fatigue is from all the Advil I was taking, but at least the pain never got above a 6 on the pain scale that day.

I went home and slept for 4 hours.

I then woke in a panic – it was 7:30 and I had not set my alarm! I scrambled out of bed, heart racing, thinking I would be late for work! Then my husband told me it’s PM, not AM.

And I hadn’t even had any Tylenol 3 that day. I was just that screwed up from the pain and fatigue. I was up for a couple of hours and then went back to bed.

I woke in searing pain the following morning, on September 28, just before 5am. I had nausea with the pain. I gingerly got out of bed and took half a Tylenol 3, because I needed to be up for work in the next hour and a half. It took about 35 minutes for the medicine to kick in, with me suffering there in bed the entire time. The Tylenol 3 mostly managed the pain once it did kick in. When my alarm went off, I got up for work and took a shower. I experienced heavy bleeding and moderate pain.
In a daze, I ate breakfast, and went to work. I took a total of 1,400mg of ibuprofen that day, and worked a full day in pain, because of the above-mentioned parent observation week.

Thursday, September 29:
Once again, I was awakened by searing endometriosis pain. This time it was 1am. I popped a Tylenol 3 and 600mg Ibuprofen, and waited for it to kick in. By 2am, I was dissociated enough from the pain to go back to bed. My alarm went of four hours later.
I still required 1,200mg additional ibuprofen to get through the workday. I was very tired and crampy, despite the bleeding tapering off to spotting.

Friday, September 30:
This was a daycare-only workday, as the head teachers were conducting parent conferences all day. This is usually loud and high energy, and wild, as three classrooms’ worth of children are condensed into one large classroom for the day. Despite abundant assistant teachers and teacher-trained assistants in the room, it’s like trying to get monkeys to come down off the chandeliers on a daycare-only day. I had low energy and was spotting, but I managed to get through the work day. I did not take any medication that day, because I was fed up with how much I’d taken all week.

Saturday, October 1:
I was still experiencing low energy post cycle, but I was expected to be at a Child Development refresher class all day. I accomplished this with my inner child kicking and screaming the entire time.

Sunday, October 2:
As happened after my last menstrual cycle, my anxiety was way up after this cycle. It’s not normal, but it’s happened twice in a row, now. Hmmm. I had to do another full day in the Child Development refresher class, and woke up with swollen eyes. As the day progressed, my right eye got worse. By 2:30pm, half of the eye was blood red.
Wonderful. I’d developed pink eye – and likely got it from training center the day before. My pupil in the right eye was bigger than in my left eye by 6pm. I called Kaiser Permanente, who freaked out about the pupil because of my age, and they urged me to go to an urgent care Kaiser center. This, after my whole weekend was shot by being in a training class, and now I have to sit in an ER? I was NOT happy. The result: contagious pink eye. I was given antibiotic drops, which I had to take for 10 miserable days.

Monday, October 3:
I missed work due to the pink eye. Had I not gone to the training class, which was foisted upon me last minute, I would not have gotten pink eye, and I would not have missed work. On top of that, I experienced left side stabby ovarian pain all day, despite the fact that my period had just ended. How’s that for a kick while I’m down?

My immune system hates me. I wish I could fire it. I’d pushed it to its limit by working during an endo flare, and the pink eye was able to sneak in. It’s always something.