Dudes. My surgery is on Friday. FRIDAY! How did this happen?

Ever since I got my date I’ve been in hyper-list-making mode. Lists for the grocery store, lists for projects around the house I want to finish before the legions of people start traipsing through, lists of things to clean and craft projects to prep and supplies to buy and comfort foods to make and errands to run.

I’ve been scrubbing my house like we’re putting it up for sale. I’m normally extremely anal about house cleaning (Wha? Me? Anal?), in fact, that’s the only thing Bear and I ever fight about, but being disabled due to chronic pelvic pain makes you reexamine your priorites a little bit and I decided that I could stop scrubbing my baseboards with a toothbrush every week, at least until I was healthy.

One of the few good habits I got from my mom is never leaving for vacation without a sparkling clean house. That way you won’t come back to any nasty surprises like moldy laundry or gross smells, but more importantly when your back and needing a vacation from your vacation, the last thing you need is a mountain of dishes also needing your attention. A clean house is relaxing.

So in that spirit I’m back down on my hands and knees ignoring the pain in my back and the dizziness in my head and scrubbing for all I’m worth. For at least the next week I’ll be stuck in my bed aching from head to toe. The last thing I need is a view of dustbunnies in every corner of the house.

On the recovery front, I’m anticipating a week in bed. I know that’s not what the doctor’s necessarily suggest, but the doctors don’t have to relearn every function of their abdominal muscles including pooing. The last time I had a lap the doctor operated on a Thursday so I could be back to work on Monday. Shyeah. That was a bad idea. Every time I bent down to get a file, every time I opened a file drawer, every time I moved as I sat straight up in my office chair with ergonomic back support, my guts screamed at me that I was killing them. At about noon I finally gave in and told my boss I was going home. And then I repeated that scenario every single day that week. I kept thinking that one of those days I’d get better, and yet every day I’d try to lift a box or cough too hard and run home crying.

So this time, my butt is not moving from the bed until at the very least Wednesday, but I’m not doing one dang thing until next Saturday. Mark my words.

Also, I asked Dr. I’mnotlooking about my chances of having a laparotomy instead of a laparoscopy. Since I was diagnosed with Stage III endo at the ripe old age of 23 (it only goes up to IV, and that’s hysterectomy time), and then went on to try to get pregnant for the next few years which meant no birth control pills which meant the endo was growing largely unchecked for four years and was a record breakingly aggressive case, I’m guessing that he’s going to take one look inside me and shudder. The difference between the two surgeries is that the laparoscopy that I’m having on Friday consists of two small insicions and it’s all done with a camera and a cauterizing wire. The laparotomy is where they slice right through my abdomen, open me up, shuffle me around, remove some organs, clean them off, and then try to put everything back where they found it. For some reason Dr. I’mnotlooking won’t do a laparotomy on Friday no matter what he finds. If he determines I need the more aggressive surgery, then he’ll close me up, send me home with all the same pain and symptoms I’ve got now plus the pain of the surgery, and then reschedule me for another day.

As truly crappy as it would be to have to go through this surgery only to go through it again and worse a few weeks later, I’m almost hoping that’s how it turns out. At least if they completely open me up I’ll know that they’re being thorough. No chance a whole mess of endo will be hiding on the back of my stomach or near my spine waiting to screw me over. And since I’m looking at coughing up 10K for a baby, I don’t want to take any chances that this stupid disease could foul that up.

I probably won’t post again before the surgery, too much stuff to clean after all, but I’ll have Bear post afterwards to tell the Internet I’m still alive and kicking.

What with Dr. I’mnotlooking’s decision to give me no pain killers that I couldn’t just go out and get on my own without the office visit and dealing with the leftover lube they toss all around my lower extremities, I’ve been crying pretty much non stop since I left his office.

Not because he hurt my feelings beyond repair. We unfortunately live in an area rife with drug abusers and the training he has on what to watch out for sounds exactly like a real person in real pain. That’s why addicts are known to be such good manipulators and liars. I still say that you should not let your fear of abuse prevent you from treating your patients, but hey, what do I know about what his bosses are harping down on him about?

Mainly I’ve been sobbing my fool head off because I am freaked the freak right the freak out that I’ve going to have to experience every moment of every painful twinge and cramp and ache and just suffer with no relief in sight. And the amount of pain that is staring me in the face? IS TERRIFYING.

I imagine this is how expectant mothers feel about their impending labor. They’ve been pumped full of birth horror stories since they started ovulating, they don’t know when it’s going to start, but they know that it will start and that when it does the pain will be great enough to turn a beautiful loving mother into an irrational snarling she-beast bent upon revenge and destruction.

I just also have the added privilege of knowing precisely how bad this pain could get. Considering that I have vomited from the pain when I have been fully medicated, considering that while on drugs too strong for a doctor to feel comfortable dispensing to a highly coherent patient in obvious pain I had pain so great I literally, LITERALLY as in “in the literal sense”, could not breath and my heart started fluttering, considering that while on Vicodin I’ve sweated and snarled and crawled and grabbed and writhed with the best of them….

Well, there just aren’t words to describe the joyous sense of anticipation that fills my days.

I’ve been on the phone all day and night calling for medical records, calling former doctors and asking them to intervene, crying to family and friends in the medical field and asking their advice, and I think we’ve worked out a pretty good battle plan. I’m going to fill that damn Naproxyn prescription (although the pharmacist will probably just point me to Aisle 8, 2nd shelf from the top), I’m going to take it and the second I start to feel pain, I’m calling his office. If that doesn’t work I’ll go to urgent care and make him look bad in front of the emergency room doctors who will sure as hell know what Ultram is, and if that doesn’t fix it I’ll go to my family practice doctor with my medical records and demand some damn pain treatment.

Today my greatest battle is just staying calm. As any stupid person can tell you, the first thing you’re supposed to do in situations like this is….say it with me if you know the words….”JUST RELAX.” But that’s kind of impossible to do knowing what I know. It’s like trying to take nice deep breaths while you see a grizzly bear barreling towards you. But more stress is the absolute last thing I need to get through this. Besides an uncaring doctor, but that’s implied, right?

Finally.

FINALLY.

5 years since my last operation, and 2 years since we expected coverage, our health insurance kicked in. I just got back from my first visit with my new Gyno. And I’m BAWLING MY FOOL HEAD OFF and sitting in my jammies and canceling all my plans for the day because I plan on laying on the couch in the fetal position with one or both cats and watching cheesy cheesy guilty pleasure movies like “Don’t Tell Her It’s Me” while I sob into their fur.

It’s really not anywhere near as bad as I’m making it. But my feelings were hurt in one area, and instead of being so excited about the progress I’m making and all the nice people I met who were so good at their jobs and so willing to help me, I’m licking my wounds and panicking about the pain I see coming my way.

First of all, our provider is Kaiser which brings it’s own little set of trials and blessings. I had them when we lived in the O.C. and they were responsible for my last lap. Their best quality is that they are so stinking cheap for copays and deductibles. My $48,000 surgery cost me 15 bucks. Their staff is awesome and capable and so sweet, they cover everything I’ve ever needed including 3 tries at IUI (which they advised me not to bother with since I am a Hopeless Case), and they believe in well-patient treatments so they’re awesome with pediatrics and they offer all kinds of free clinics and education and alternative treatments.

But, if you are unique in any way, you are on your own. To be in the Kaiser system you will take the treatment they give you and you will be grateful and you will NOT DEVIATE FROM THE REGIMINE! No, they will not treat your endo with surgery until after you have taken every single freaking infertility class they offer. No matter how bad your pain is or how obvious your symptoms are they will not treat your endo with surgery until after your partners sperm count is measured on three seperate occasions and until after you have had an HSG (regardless of the fact that they’ll just do another HSG during the lap) and there are four separate appointments to accomplish each measly step and you will take the appointment they give you and be grateful, even if that means you have to wait a month to see some nurse practioner who will only prescribe you an antibiotic so you can take that before your HSG appointment which can’t be scheduled for another month. In short, RED TAPE HELL.

So I was a little hesitant to go back to them. But once Bear did the math, which is just about his favorite thing, we realized that with as often as we planned on using our coverage, the smart money was on beautiful no-deductible Kaiser.

Last week I took a deep breath and dove back into the Red Tape Fest. In Kaiser land they won’t even look at you without a medical record number. They can’t do anything without it. Not book an appointment, not a visit, not a hello. It took me about four hours lost in phone menus and web pages, but I finally found a delightful woman (I tell you, their staff is legendarily awesome) who couldn’t have been better and got me an appointment the day after my insurance kicked in. Hooray! I thought to myself.

Of course, even four hours of searching is way too smooth. I should’ve known there would be a snag. I show up to my appointment today and they type my number into the computer, and there’s nothing there. So I go to the Member Services office where the best lady ever tried to help me for 30 minutes and we got no where. So on the sly she handed me a temp card and send that if I couldn’t get it straightened out right away I’d have to pay for the appointment myself. I could’ve kissed her. I’d still have to deal with corporate offices and more dreaded red tape, but at least I got to keep my precious appointment.

So once that’s all fixed I met with the doc. We’ll call him Dr. I’mnotlooking since he wouldn’t look at my breasts during the examination, for my comfort I’m sure, and then he had a weird habit of talking with his eyes closed for extended periods of time. In poker they’d call it hooding – like an extended blink with the eyebrows raised like the eyelids were going to flip up at any moment like windowshades in an old Tom and Jerry cartoon.

He was very sweet, made sure I was comfortable at all times, switched to a smaller speculum when I was in too much pain, and agreed to put me on his surgery schedule (Hallelujah!!) but he also did something that REALLY horked me off.

I’m getting ahead of myself. First of all you have to understand, I live in Modesto. If you’ve heard of Modesto it can only be one of two things: notable criminal cases, or the raging meth problem. In fact, we very proudly hold the title of largest Meth producer. Salt Lake City tries to keep up, but we’ve got them beat cold. If you were a doctor in Modesto, I can only imagine that you’d see A LOT of addicts. And if Oprah’s programming schedule is any indication, a lot of those addicts aren’t so scary street person looking anymore. They look like any other suburban anybody. Maybe even like me.

So in walks this well-dressed, educated woman, who he’s never spoken to or seen before, complaining of constant excruciating pain, claiming to have a history of endo but with no real proof and it was probably the case that the last three patients he saw were asking for heavy narcotics. My chart lists that I occasionally take Vicodin (extremely occasionally – that crap is EXPENSIVE) but usually Ultram/Tramadol, which HE’S NEVER EVEN HEARD OF, and then I ask for a prescription for the pain.

He didn’t exactly call me a pill-seeker, but he didn’t exactly not either, it’s more like he just expressed a distaste for prescribing narcotics especially since we haven’t had time to get into the “social, chemical, or psychological factors that cause chronic pelvic pain” or in other words since he didn’t have the time to talk to me and make SURE I wasn’t a pill-seeker. He actually had the balls, after I cried and hyperventilated my way through the pelvic exam because it hurt too much when he inserted THE SWAB!! to ask if I could get by on 800mg of motrin. Which is FOUR FREAKING ADVIL! Of course not! 5 years ago I had Stage III endo and it’s been growing largely unchecked since then. I’ve been disabled for two years with pain. If FOUR FREAKING ADVIL would ease the pain then would you call that disabled? So he writes a prescription for Naproxyn and I say OK because I’ve never had that before and if I had just said that Motrin wouldn’t cover it, then he wouldn’t really try and push another OTC on me, would he?

So guess what Naproxyn turns out to be.

FREAKING ALEVE!!!!!! AAALLLLEEEEEEEEVVVVVEEEEE. Oh thank you wise doctor. You know in all the years I’ve been clutching my guts and praying for death, In all the times I’ve been in the pharmacy reading the back of every freaking bottle hoping that something would at least let me sleep through the pain that night, never once have I looked slightly to my left to find my salvation waiting there for me right on the shelf. Why didn’t anyone tell me these things were READILY AVAILIABLE. It’s a good thing you went to med school and got all that training so you can tell me EXACTLY THE SAME THING THE COMMERCIALS TELL ME!

You’d think that an OBGYN, who does nothing but deal with women’s health day in and day out would be a little more compassionate to the pain management needs of a patient. Granted I just walked off the street, but what in the hell does a girl need to do, suffer in agonizing pain for two months so he can get to know me before he gives me the drugs that will help me survive?

The thing that really pisses me off is that I never asked for Vicodin. I hate taking Vicodin. When I’m on that stuff, I can’t do anything. I can’t talk, I can’t read, I can’t knit. I can lay on the couch or sleep. That’s it. Who would really want that for their entire life? Besides an addict, obviously. I was asking for Ultram, which is a few steps down from Vicodin, but HE’D NEVER HEARD OF IT. I asked for anything between OTC and Narcotic and he couldn’t come up with a thing.

Bear suggested having my prescribing doctor, my father-in-law, email the doc and explain my past treatment and act as character witness, and possibly introduce him to Ultram. I was also thinking of emailing him myself and telling him that if he’d told me he was giving me a prescription for ALEVE I could have saved him the trouble and explained that I’ve already tried it and it does nothing for me, can I please have a real drug since you are the DOCTOR and are supposed TO HELP ME.

I might have to try revising it a few times to get the bitterness out.

Dear Anonymous Comment Leaver who suggests I’m bi-polar,

First of all, let me just say that you managed to come off as a very very sweet and caring person despite the grenade you were handling. I have no doubt that you meant absolutely no offense and found yourself in the tricky position of, “someone should say something, but how do you possibly say something?” On that front you did extremely well. Good work for your diplomacy and thank you for your concern.

I’m not at all offended by your suggestion, but it does make me stop and think about what I’ve been writing that might paint that picture to someone who doesn’t know me.

I too have many people close to me that suffer from one mental illness or another, so I’m all too aware of what these diseases look like up close, so I can say with confidence that I do not need medical intervention.

What I need is a cure for endometriosis.

Bear is in the same unfortunate position. I look and sound pretty close to normal, and so there is no way to truly see how this disease has ravaged me. I’m always trying to give him context clues. “See, you can tell I’m really hurting today because I couldn’t tie my signature ornate bows on the Christmas presents.” “You can tell today is a bad pain day because there is laundry strewn from one end of the house to the other and just for today I don’t care.”

What could easily be mistaken for cycles of depression and mania, are almost always tied to my menstrual cycles. I’m ordinarily a manic person. I’m Type A and driven and totally OCD. I cannot sit still EVER. This is not mania, this is me. Everyone who knows me knows I put Martha to shame. I cook an entire Thanksgiving dinner, make a homemade centerpiece out of treebranches, and sew all the table linens myself. When I teach Sunday School I not only teach the lesson but I make intricate handouts for 15 people that consist of handmade jewelry or personally bound books. I’m crazy, absolutely, but my problem is OCD, not bi-polar.

But there are days, many many days, when I am just not capable of my normal obsessive behavior. You’re right, there are many days I can’t lift my head off the pillow, but that’s because it’s weighed down with a migraine and my cramps are causing me so much pain that I vomit every few hours. That’s when the cramps pull so hard on my internal organs that I alternate between constipation that makes me bleed and diarrhea. When the pain radiates through my legs and into my chest so that I can’t walk or breath. When I can’t eat or avoid the bathroom for more than an hour at a time because of the pressure the endometrial lesions put on my stomach and bladder.

But I never write about any of that stuff. So how could you know? I purposefully avoid writing about it, and maybe I shouldn’t. Dooce seems to have done pretty well with the whole constipation angle, maybe I should rethink. I’ve avoided writing about all that for a few reasons. Mainly because I didn’t think anyone would want to read about it. What is more self-absorbed than a blog? A blog about your non-lethal health problems. But I also didn’t want to write about all this because I wanted this blog to be about my life, not my illness and I’m just flat in denial about how drastically my life has changed because of this illness.

I never intended to write an infertility blog or an endo blog, I just wanted to write because I wanted to write. Because I want to write books and I’m scared stupid so this seemed much more approachable and bite-sized. I see now that the problem with this approach is the same problem I had with my middle school diary. I only write when I feel like writing which is usually when I’ve got some emotions to work out. So it doesn’t paint a very accurate picture of me. If you look at how long I’ve had this blog and how many entries there are, it’s apparent that there is a lot of between the lines that I’ve been leaving out. I’m going to have to work on that.

There are many days when I am depressed. Absolutely. But I work hard to keep myself honest about that because of the experiences of my loved ones with the disease. I’m constantly asking myself, “how many days in a row have I been more unhappy than happy?” “Am I depressed about unreasonable things?” and the answer is no. I’m doing great, considering. I’m happy, I smile all the time, I’ve never stayed in bed due to depression, when I am upset, I’m upset about something specific. I’m sad because I didn’t have the strength to scavenge for tree branches today, or because my cramps hurt too much to sit at the sewing machine, and therefore my manic productive self will have to accept the fact that I’m just flat out not as capable as I used to be. And that is depressing. Unbelievably depressing. Focusing on my future in this disease is depressing. But then my menstrual cycle marches on and my hormones allow me a productive day, and I get through it.

Truly, thank you for your concern for a total stranger that you would first of all read my entire blog, and then take the time to write out such an eloquent and thoughtful comment. I truly hope you’ll come back and let me get to know you without the Anonymous label now that you know I won’t totally bite your head off and throw you to the ground.

Would you believe that I have not been to bed yet? It’s 10 in the morning, and I’m just now starting to think about tucking myself in.

I’ve never been a good sleeper. I remember being as young as 5 and sleeping in until noon in the summertime, and staying up late enough to watch Saturday Night Live. There has never been a morning in my entire life when I’ve woken up and said, “I feel rested. Let’s get up and greet the day!” My mornings usually sound more like, “What is that bright stuff and why won’t it leave me alone?”

I’ve honed my morning procedure into an exact science, eliminating all the extraneous time-wasters like breakfast and hair-brushing and I’ve spent years carefully crafting a wardrobe that allows me to pick clothes for the day in less than 2 seconds, and not end up looking like a slob. Aside from the unbrushed hair. All this in an effort to milk those precious extra seconds of sleep.

Since my endo started taking over my life, my sleep has gotten even worse. I regularly sleep for 14 hour stretches, which then bleeds into the next day, forcing me to stay up even later than the night before because even I can’t fall back asleep 6 hours after a 14 hour marathon nap, until eventually my days just completely overlap.

Like last night.

Bear wanted to go out to eat since we had gift certificates and he had a crappy day, so I rolled over and went back to sleep to get as much rest as I could. Meanwhile, Bear puts in an entire 8 hour day, then comes home to find me yawning and wiping the sleep out of my eyes. I slept in until 4:30 in the AFTERNOON!

Part of the problem is my magical magnet mattress. When we first got it I remember trying to drag myself out of bed and physically not being able to. Like I had way too much iron in my blood and I was stuck to the magnets myself. The salesman told me that extra sleep was a common side effect, along with vivid dreams (Hoo Boy is that ever true. Be grateful I spare you.). Apparently the magnets increase your REM sleep, which is when you dream, and they increase the amount of sleep you get in general until your body heals itself.

Excellent, if it weren’t for the fact that I’d have to be Rip Van Winkle to get enough sleep for My body to heal itself.

I should really stop complaining though, because before this pad came along I couldn’t sleep at all. I’ll take too much sleep over too little any day.

Bear just got back from a hiking trip with all the teenage boys from church, and I think he’s broken. They hiked half-dome in Yosemete, which is apparently a legendarily gut-busting hike, and Bear’s only been hiking maybe one other time in his life.

Not to mention the fact that he weighs about 250 lbs, and that’s a heck of a lot of weight to carry around no matter what kind of physical shape you’re in. All the skinny guys, including Boy Canadian, were doing great! Chugging along, jumping up the rocks, making it with no problems whatsoever. Meanwhile Bear and another former college athlete who still weighs over 200 lbs were dying the whole way up.

It reminded me of the Pro Wrestlers who went on Amazing Race thinking they were so tough they were going to kill everyone, and instead got their butts handed to them because they couldn’t carry all that muscle around on the marathon that race always turns out to be.

So poor Bear can barely walk, and the exertion combined with mild dehydration apparently made him susceptible to a virus, so he’s now shivering and has a fever and so far he’s sweated through three sets of pajamas. He’s completely helpless.

And here’s where my problem comes in. It’s *my* job to be the helpless one around here, what’s the big idea? I had to make my own dinner and his, I had to do all my work for church tomorrow by myself, AND, I even had to leave the house on my own to drive all around town looking for printer ink.

It’s days like this that I finally realize just how badly this disease has destroyed me. Bear is so good at taking care of me that my needs are all met and I’m OK. But when he’s incapacitated? I’m screwed. Eating and getting printer ink, two stupid things that I wouldn’t have even bothered to put on a to-do list before, now become insurmountable tasks that take every ounce of willpower available to my poor beleaguered body.

I really wish that my body would cooperate on those days that Bear needs a sick day, but the pain continues unabated, and I have no other option but to suck it up and find a way to deal.

Now that Bear’s landed this new sweet gig, we’re finding out all the fine details and making all the appropriate plans. What will his hours be? How long will the commute be? Do we need a second car now? How fast can I spend all this new money?

And of course, the thing I’ve been waiting for for three years now….Health Benefits.

Unlike the company Bear currently works for, which gives their executives insurance starting day 1, this company makes you wait 90 days. Which is pretty standard, I realize, but with the start date still two months away, that means that I have 120 days left to be disabled.

The relief of the new job didn’t last very long, now to be replaced with the ungrateful depressed funk.

We were hanging out with our Canadian friends today for the holiday, and girl Canadian, who I love because she’s so cute and sensitive and can’t say the “Bitch” word, but will talk about her hymen without batting an eyelash, was asking about our IVF plans.

When a job was still some speculative obtuse thing, we planned on doing IVF in a year. Thanks to Bears grandma, we’ve got the money saved up. So now we just need health insurance to get my endo treated, and to properly take care of the child should I get knocked up according to plan.

But as I was reviewing the timeline now that I have an actual start date, I realized something pretty petty and stupid in the grand scheme of things that actually really bothers me.

Mormons as a community are really tight. And we say that anywhere in the world you go you’ll have a family if you have a ward (which is like a congregation). We even refer to our congregation as “our ward family” to emphasize the unity we have together. My current ward really does feel like a family. They all know me and love me and know my history and are pulling for me. Just Friday night I met a woman who knew of me and she immediately started telling me all about her fertility history to give me hope and let me know she was with me.

When my kid finally gets around to coming, it’s this environment I want to bring it into. Of course I’ll need the help and support, but more importantly, I want to be surrounded by people who recognize the miracle.

According to our current timeline there’s no way I could get insurance, get a surgery, recover, go through all the IVF rigamarole, get pregnant, stay pregnant, for 9 whole months, and give birth, all before Bear’s training is complete and we’re shipped off somewhere else.

When I realized this, I burst into tears. I’m sure that wherever we’re sent I’ll find new people to bond with and who will support me, but this just struck me as yet another disappointment an an epic series of disappointments, reminding me that I can have NOTHING the way I envision it.