I Will Not Suffer In Silence

Despite having cramps this morning, I did not want to chance taking my car to work, and I had forgotten again to see if there was a quick bus to my workplace…so I bicycled to work. This is the first time in 134 days that I have bicycled! It felt so good. Granted, I live only a mile from my job, but still, any exercise is good exercise. The weather has finally turned from constant winter rain to unseasonably warm and sunny; yesterday it got up to 83°F and today it got up to at least 86°F, so there was no excuse not to bike to work.

Speaking of exercise, I’ve been weight lifting again. Don’t get excited – they’re only 3lb weights. But as I said, any exercise is good exercise. I typically do the weights before bedtime, but I’m trying to get better at lifting when I wake up in the morning, too.

This month has been stressful for three reasons:

• I’ve been sick all month
• My father-in-law’s been in the hospital and just underwent a Transmetatarsal Amputation on Monday of this week
• A classmate who wanted to work with me on the thesis project for graduation has not done anything useful, and I have to fire her.
• Mercury turned Retrograde yesterday.

I detailed my getting sick in this post. I felt like I was getting worse, not better, on that day, but instead of starting in on a new pack of antibiotics, I decided to give it a few more days, since my doctor said the z-pack was supposed to have benefit for 5 days after the last pill. I just didn’t want to have to get a yeast infection. I have enough going on down there as it is with the endo.
I’m still coughing up junk, but not as much. I’m still needing what’s left of my inhaler once a day, usually in the morning. My ears are still clogged and the left ear is still painful, but not all day long anymore. So I guess I’m getting better…

Around about March 25, my arse started bleeding again. Same as it ever was, always a week before my period. It lasts a few days and happens during bowel movements, and then stops.

This week my symptoms were near-debilitating low back pain on Tuesday, and intermittent uterine cramping throughout the day on Wednesday and Thursday. Then last night I went to bed with the heating pad, woke with worsening cramps at 3:30am, took a half Tylenol 3, and went back to bed with the heating pad. This morning when I got up for work, I had moderate low back pain and the pelvic pain was about a 4 on the pain scale.
I kept forgetting to take ibuprofen all damned day, but after biking to work, I felt like I was more limber throughout the day. So that’s excellent.

Regarding my stress level…my father-in-law spent February in the hospital and then in physical therapy rehab after having his left toe amputated. Five years ago, he had his right toe amputated. He has mismanaged his diabetes for 20+ years, and is now shocked that he’s losing digits. When, two weeks after being discharged from rehab he was back in the hospital with another gangrene toe on the left foot, all hell broke loose (again) with his wife.
She told him he can’t come home until he can properly care for himself. Then she went on a previously planned vacation with her son and wasn’t back in time for her husband’s surgery. The surgery was a much agonised-over foot amputation.

His wife got back the day he had surgery, showed up at the hospital once he was out of the recovery room, and then fled in a hissy fit a couple of hours later. I’m the one to thank for that, because I got tired of her talking about him as though he wasn’t in the room with us, bitching about how he doesn’t take care of himself and it’s all his fault he’s back here again (not entirely true – he has a calcified artery in his leg, so no amount of dietary management or exercise was going to stop the toes from dying. She even told me earlier in the day that she was throwing out all of the “liquor”, even though he only has wine in the house. I tried to explain that his occasional glass of wine isn’t what set all this off but she wouldn’t have it.

Sure, yeah, it’s still his fault over time due to gross mismanagement of his illness, but he didn’t do it in the past two weeks as she keeps claiming). Anyway, I told her she and he need to work this out, it’s not for me and my husband to figure out for them. And apparently that’s talking down to her and I was told, “You can’t talk to me like that!” and she fled. Left her husband there, eyes welling with tears. Refused to answer her phone for roughly 15 hours. Wasn’t at the house when we drove by after hanging out in the hospital awhile longer.

I found out later that she’d had a previous marriage and that the guy was an alcoholic who literally drank himself to death. So it seems she’s having a giant triggering flashback that she can’t escape, and she’s projecting her previous marriage partner onto her current partner. Wow, serious mental issues, there. I’m told she refuses to do therapy. The way she freaked out when I said they need to work on their stuff kinda indicates her refusal towards therapy. I dunno. I don’t actually want to talk to her again for awhile.

The other stress I’ve had revolves around continuing homework and internship responsibilities, and the classmate who wanted to work with me on the thesis but who has barely done anything at all towards it. I’m going to see what she produces for the seminar next weekend and then fire her if she doesn’t have enough to show for. Ugh. Hate it. But she can’t take the credit for all my work. I won’t let her.

In the food and drink department, preceding this menstrual cycle, I have imbibed on wine, port and nigori to the point of drunkenness, but not anywhere near the point of making an ass out of myself. I have gorged on chocolate and cheetos – staging a rebellion I guess – I have no excuse. I know these things hurt me and I did it, anyway. I wanted comfort food to deal with everything.

Regarding the astrology thing with Mercury going retrograde – I’ve been feeling the effects of that for the past two weeks. Ugh. It becomes harder for me to control my mouth. It becomes impossible for me not to drink or spend money or in general do unwise things to my body and mind. Most people find astrology to be hogwash. That’s fine, we’re all entitled to our quirks. If you don’t like my quirk, I don’t need to hear about it. Plus, I’m PMSing. Telling me how illogical astrology is will just get you thrown into a pit of rabid weasels.
I’m probably PMSing so badly because of all the junk I’ve been putting into my body. But it’s too late, now. I just have to go through this month and hope all the damage I did isn’t long-lasting in my body tissue.

The PMS is pretty harsh. I’m extremely moody and my body temp is all over the place, but mostly I’m freezing. I just spent a day in hot weather, came home, stripped down to my underwear, and within an hour I was freezing and now I’m still freezing, even though the house is 70°F inside (it’s down to 73°F outside). I’m literally wrapped in a velour blanket. Oh and the cramps are back again, now that I’m cold. Awesome. Good thing I just ordered some leafy green saag from the local Indian restaurant. Oh yeah, spending money again. *sigh*
George will be here officially in a minute – the mucosa changed colour this afternoon.

Lastly, I don’t think I’ve experienced mittelschmerz this month. I know I said the same thing in January and went back on it, and then in February it was difficult to tell for sure because it could have either been dyspareunia or mittelschmerz, or both. This month, I was just too stressed out to remember to record whether I was having mid-cycle pain.

I’m due for my 5th cycle since surgery 3 months ago. Why so many cycles, you may ask? I have a 25-day cycle. Sometimes I get my period twice in a 30-day stretch. I call these my ‘blue moon periods’. This month may end up as a blue moon period if it arrives today, cuz it certainly feels like it’s going to be a day early.

Whether it arrives today or tomorrow doesn’t matter – it’ll be crappy either way. Arriving today means I had two periods in the same month. Arriving tomorrow means it happens on April Fool’s Day. HAR HAR.

I’ve been experiencing moderate low back pain and intermittent sharp uterine cramps for the past three days. Starting a week ago, my ass decided to gush bright red. This is nothing new and has not changed despite surgery, and despite the surgeon saying she found no sign of endo on my bowels.

I have eaten like complete shit for the past three weeks, and moreso within the past week, because I have been stressed the hell out. I have subsisted on coffee and chocolate and cheetos. There is going to be a heavy price to pay for that. I woke at 3:30am with cramps so strong that I needed half a Tylenol 3.

We’ll see how this cycle goes…

I did go to work that next day on March 10, and I worked nearly the whole day before the pain decided to come back and bitch-slap me one last time. I left an hour early. So this month, I’ve only missed one day and one hour of work total on account of george, and once again I was never fully bedridden during this cycle. That’s two months in a row now!

This is really great post-op news!

Next period is April 1st (ha-ha). We’ll see how it goes. I remain hopeful.

The main complaint for this month is attack of the killer viruses.

February 28th I came down with the flu, and that was on a Monday. I went to the doctor, who listened to my lungs and remarked that he heard “crackles.” He listened again but I had a coughing fit, and that seemed to clear things up. I joked that he’d have to wait for the next build-up before determining “crackles” again.

The doctor asked if I’d had my flu shot. I said no, because I’m allergic to eggs (flu shots are created using chicken eggs, did you know?). He then suggested I try Tamiflu. I told him I have previously examined the drug and its side-effects, and decided that my sensitivity to meds, coupled with dealing with autoimmune disease, did not make it appealing to chance multiple side effects on the off chance that the flu might be lessened by one or two days.
The doctor asked what autoimmune disease I have, so I told him I have endometriosis. He looked annoyed, put down his pen, looked at me and said, “Endometriosis is not an autoimmune disease.”

My jaw dropped. I politely told him that the confirmation on this is fairly recent, so yeah, it’s actually an autoimmune disease. Meanwhile, his intern student doctor, standing to my left, murmured under his breath, “yes, it is an autoimmune disease.”

The doctor retorted angrily at me, “It is NOT an autoimmune disease!”

I thought for sure his next comments would be something about endometriosis MERELY being painful period, and why don’t I try some Midol to ease the cramps…he was at that level of condescension.

I told him “First of all, I’m the one with the disease, so I’ve done my homework, so yes, it IS an autoimmune disease, and secondly, there has been proven anomaly on chromosomes 1 & 7, WOULD YOU LIKE COPIES OF THE STUDIES, since I am subscribed to medical journals?”

The intern again quietly agreed, “it is an autoimmune disease.”

The head doctor wanted to hear none of it. Red-faced with rage, I informed him that I’d be inserting the studies into my medical file for his education.

THIS IS THE TWENTY-FIRST CENTURY, AND YOU ARE IN A SUPPOSEDLY DEVELOPED NATION, IN A SUPPOSEDLY HIGH-TECH DOCTOR’S OFFICE, TELLING ME WITH YOUR IGNORANCE THAT YOU ARE NOT UP ON THE LATEST MEDICAL RESEARCH?!?!?!?!

This is the second doctor’s office I have chosen in this city. I see I may have to fire this office, too. Sadly, I’m certain that all local doctor’s offices are this stupid. When I was leaving the exam room, the intern held the door for me. I smiled and quietly thanked him for backing me up. He grinned and replied that he was looking forward to the heated debate on the topic. It seemed like he was trying to tell me that he’d be in trouble for agreeing with the patient, and that it wasn’t his first run-in with the doctor. Ugh, poor intern. I sincerely hope he makes it out of med school in one piece.

When I got home from the doctor’s appointment, I called the office and told them to put it in my file that I will never see Dr. James E. Eichel again. As a matter of fact, my husband reminded me that the reason he left that doctor’s office the first time around in search of another family practice was because of Dr. Eichel’s condescending attitude.
I did a background check on him, nothing comes up. But take it from me and my husband, the guy’s a total asshole. Also, check out doctor reviews on the web – numerous people have found him to be condescending and rude.

I was so angered by this doctor telling me that my debilitating chronic illness is not in as valid a category as he feels it should be, that it has taken me 24 DAYS to write about it, and even now, this is the best verbiage I can find without using a string of expletives and then throwing something across the room.

So that was Monday, February 28. I took the whole week off of work to get better. However, by that Friday, the flu had turned into bronchitis. I was back in the doctor’s office, and again a doctor listened to my chest. By now I was seriously wheezing, too. The doctor said she heard “crackles”. Hm, this is the second time in a week that word was used, so I asked what it meant to detect “crackles.” She said it means pneumonia at worst. I asked if Dr. Eichel had put it down in my chart that he’d heard crackles back on Monday.

GUESS WHAT.

He made no mention whatsoever!

ASSHOOOLLLLLLLLLLLE!

So I was sent to the hospital for a chest x-ray. Thankfully, it came back normal. However, I was diagnosed with bronchitis and put on an inhaler.

The following Monday is when I got my period. I went to work that week, and only missed one day of work, and took it as easily as I could given the bronchitis and menstruation. I hacked a lung every day, and alarmed the students some of the time with my coughing fits. Being outside for a couple of hours each day didn’t help either, what with the cold, wet weather we’re having.

Ten days later, just as the bronchitis was clearing, I felt well enough to go dancing. We got home late, and I got about three hours of sleep, got up and went to work.

By the end of the day, I had a sinus infection. Go me. :(
Three days later, I had an ear infection.

Friday, March 18 I was back in the doctor’s office. The doctor, thankfully my preferred doctor this time (April Fredian), walked into the exam room, took one look at me, and sighed, “you got it, didn’t you.” She told me that this flu-turned-bronchitis-turned-sinus-infection is a really nasty thing she’s seeing in a third of her patients, and even she did not escape it. She estimated that I will be sick for another month and a half.
Dr. Fredian examined my lungs (clear) and my ears (left eardrum inflamed, could rupture), and my nose (more allergenic than viral). I was told all I could really do was take anti-inflammatory meds and hope my eardrum didn’t burst. She gave me codeine cough syrup and suggested I try Afrin for the allergy-ridden nose. I asked if antibiotics would help with the ear infection – she said if by Sunday my ear still hurt a lot, to get on antibiotics. I asked what kind, cuz I still had a z-pack at home. She said the z-pack would do, and then amended her prescription, saying if my ear still hurt by Saturday, that I had her permission to take the antibiotics.

So on Saturday, the ear still hurt, and I started the antibiotics.

Today was Day 5 of the z-pack – the last day – and dammit if the sinus infection and ear inflammation didn’t get worse. WTF.

So I’ll be back in the doctor’s office again tomorrow for further advice. I’ll be demanding ear drops or something. UGH, I just want to be well again.

March 17 was 90 days post-op, and I had promised myself by March 1st I’d be back in the gym again, toning up after all that downtime from surgery. And BAM instead I get a month of wheezing and staggering amounts of lung and sinus butter. I cannot believe the head and chest can produce so much phlegm. It’s disturbing.

Oh, to go back to endo for a moment – my husband and I were intimate on March 20 and I did experience dyspareunia afterwards, but it didn’t last more than a couple of hours. It was sharp, intermittent pain – the type I thought would get worse and last for days as usual. But it didn’t! YAY!

Going back to the ear infection – yesterday I was so depressed by not being able to get back into the gym that I literally cried.
The ear pain got so bad today that I had to plug my left ear for the last hour at work, and I felt like crying from the resonating noise (I work in a preschool in daycare mode this week, so you know it’s anything but quiet).

I got home and took Tylenol 3. I’ve been in a stupor ever since, but at least I’m dissociated from the screaming tinnitus (both high and low drone pitch simultaneously in both ears, plus the pounding eardrum pain in the left ear).

That’s all I’ve got. Great news on the endometriosis – keeping that in mind through this depressing flu season crap.

My husband dropped me off at the surgeon’s office for my second post-op appointment yesterday on his way to work. I was already on Tylenol 3, as the pain had woken me around 5am.

I was very early to my appointment, so I had brought my laptop and was attempting to do homework. However, the pain ramped up, and it was very difficult to concentrate. As a result, I kept running into technical difficulties, which frustrated me, and likely didn’t help with the pain level. I estimated my pain got to 7.5 again at the surgeon’s office.

Around 10:30am, I made the judgement call to not go in to work. I phoned my workplace and made the arrangements for an afternoon substitute to cover the rest of my shift.

When my appointment time arrived, I was barely able to stand. I was shaking from the pain. I had just taken 600mg of Ibuprofen and half of a Tylenol 3 because I wanted to be coherent throughout the appointment. While my vitals were being taken, the director from where I work phoned and wanted to know what was going on. She said what I expected her and anyone who does not suffer with endo to say:

“But I just saw you yesterday and you were fine!”

Yes. But that was yesterday. The pain hits when it wants to. I was woken from my sleep with the pain.

The director asked me if this was Day 1 of my period. I told her, “Nope, it’s actually Day 3!”

I assured her I had no idea why the pain is now delayed after surgery, why I’m still getting pain at all, and that I was already at my post-op appointment and would be discussing it with my surgeon.

I appreciated that the director said she was concerned, and had wanted to check in with me herself, and that she was thinking of me. Most workplaces wouldn’t do such a thing. I did thank her for calling me like that.

My surgeon’s assistant and surgeon could see immediately how much pain I was in. They both catered to me sincerely, and made sure to bend down and look me in the eyes before speaking. Then they situated themselves in their chairs in the surgeon assistant’s office and we discussed how I’ve been doing since the January post-op appointment.

I noted how my January period had been shorter, but the pain and heavy bleeding was the same.
I noted how my February period had not left me bedridden, and how I did not have debilitating pain until Day 4 of my cycle, but that when the pain did hit, it still was 7.5 on the pain scale, and had it not been for the weekend, I’d have missed work the same as I always have before surgery.
I noted that my March period had also not left me bedridden until Day 3 (the day of this post-op appointment), when the pain reached 8 on the pain scale and woke me from sleep and caused me to cry.

My surgeon went over my surgery results again, saying there wasn’t much endo found this time around (stage I), and that she suspects neuropathy for the lingering pain. She went over the available options again, and said she knows most of them are out of the question for me, but wants to let me know that from current medicine’s standpoint, this is all that is available for me:

• Danazol
• Lupron
• The Pill
• Mirena IUD
• Presacral Neurectomy
• Hysterectomy
• Pain management classes

Out of all of that, the only thing I’m willing consider is the IUD and further pain management classes.
I actually broke down and started crying at this point. I told them that I had seriously tried to do the UCSF campus pain management, but my insurance would not cover it.

I further lamented that our insurance runs out at the end of April, because my husband was laid off in December. I said my workplace offers Kaiser, and I had no idea what to expect with Kaiser.

My surgeon and her assistant comforted me, and assured me they know people in the Kaiser system, and would do some homework for me to help get me transitioned over there in their pain management program.

I am SO fortunate to have these awesome doctors! I do not want to lose them because of insurance limitations!!!!

And now for the rejection list of treatment options:

The Pill has already made me clinically insane on two occasions in my lifetime.

I refuse to go on any hormone, GnRH agonist or male cancer drug to try to treat the endometriosis, because of the side effects of bone loss, male hair growth and lowering of voice, worsening depression and suicidal ideation (if not outright psychosis for me).

My surgeon herself said hysterectomy was useless unless she takes my ovaries, which are the main things that the endo is attacking. But if she takes my ovaries, I have to go on HRT, and that puts me back into the infinite loop of insanity.

Presacral neurectomy had never been mentioned before, and I was told it’s not recommended often at all – it has to be a special case – and my surgeon is starting to think I fit the bill for the special case.
I was told of the most common side effects and I asked smart questions, and I probably won’t go with the neurectomy. I will post more about that in a separate entry.

So again, the only thing I’m willing to consider is the Mirena IUD.

I got the prescription and referral in case I decide to go with the IUD.

When the appointment was over, I phoned my husband and told him I’d be hanging out at a friend’s house until the pain passed, and maybe I’d try public transit to go home.

I then walked to my friend’s apartment nearby and we hung out all day. By hanging out, I mean that we sat at her kitchen table, and spent a lot of time hacking up our lungs (I am still getting over the flu, she is still getting over whooping cough and yes I am immunized).

The pain did pass, and after awhile we left the apartment and got on a bus to go four blocks up hill to a coffee house. The bus ride set off a new round of pain. I thought that standing on the bus would be better than sitting, but nope – doesn’t matter. The muscles used in keeping oneself balanced and upright on a moving bus is enough to aggravate endometriosis pain. This is the second time it has proven true for me.
After we hung out in the coffee house, and my pain was only worsening, I asked if we could go back to my friend’s place. We walked back, since it was downhill, and actually the walking did help the pain a bit!

It wasn’t long after that that my friend had to go to work herself. I thanked her repeatedly for letting me spend the day with her. I spent an hour more at her place, trying to do homework again, and then my husband got off work and came and picked me up.
I thanked my husband profusely for dropping me off and picking me up.

I am very fortunate to have such emotional and physical support right now in my life. I wish all of my endo sisters had this level of support. I do not take it for granted because I have not always had this kind of support myself.

It’s a basic right to be treated humanely when you have a chronic, painful, incurable autoimmune disease, and yet so many are not treated humanely with dignity and respect.

Today is a new day, my pain level is low, and I will try to go in to work.

Today is Day 82 post-op and Day 3 of my period. The quaking pain woke me just before 5am.
I finally crawled out of bed just before 5:30am because the heating pad was not touching the pain. I ate a protein bar and took a Tylenol 3 as I sat on the couch. Sitting upright helped ease the pain, but my left leg went numb. I sincerely think the nerve bundles in my pelvis, which travel down the back of my legs, get compressed when I am sitting, and therefore ease the pain a bit. I have the most benefit when I sit on a hard wooden chair when in menstrual pain. It’s weird that the nerve in my left leg got so compressed that blood flow was cut off – I was just sitting on the couch with my legs up. I’ll take the pins and needles feeling any day over the white hot knife plunging and twisting feeling. Alas, I’m still experiencing the knifing, too.

Let’s see…good news…I had only minor premenstrual pain. My worst pain day was while I did a three mile walk, and I was smack in between menstrual cycles. The day after the walk, I experienced the feeling of surgical adhesions being pulled, especially when I stretched upwards. It’s just a tight feeling, not searing pain or anything, but still concerning. I want things to be loosened up. Gotta remember to start the castor oil packs like my naturopath recommended.

The actual premenstrual pain started two days after the 3 mile walk I did. I had mild, intermittent cramping on March 1, 2 & 3. I began spotting on March 7 in the early afternoon. Later that afternoon, I took 600mg Ibuprofen for mild cramps. The spotting turned to flow the next day, and I required a total of 1,200mg Ibuprofen within an 8-hour span. That was yesterday.

Then I woke this morning just before 5am with the searing pain.

6:30am Update:
My cat Kiki is being a good nurse to me again – he’s laying on my belly, which adds to the weight of the heating pad, which helps ease my pain. Bonus, he’s purring.

6:54am Update:
Mischief Managed. The pain is dissociated enough from the drugs, now. It feels like a fingernail is poking into my pelvis but I’ll take that over the white hot knife stabbing and turning feeling.

7am Update:
Kiki is still crashed out on me – and still purring. It’s disgustingly cute.

7:20am Update:
It’s been an hour and my cat is still purring, still laying on me! Unfortunately, I need to disturb him so I can get ready for the day ahead. I know, call me crazy, but I told work I would be in after my post-op appointment. I refuse to concede defeat, so I will proceed according to plan until my body tells me no effing way. That and if I need additional doses of Tylenol 3, there’s no way I’ll go in to work and be around children on narcotics.

Kiki seems to sense I need to get up, and so he yawned and gently walked off of me. Love my kitteh.