The secret to quality healthcare


In December I had major abdominal surgery to treat my endometriosis. My stomach was expanded with air to a truly alarming size and then each of my internal organs was lasered clean. Including all whatever long feet of my intestines. You might imagine this kind of surgery would require a minute to rebound from, and you’d be right. Digesting is still a trick I haven’t remastered, and my abdominal muscles are shredded wheat.

And then just over a month later Atti had double hip reconstruction, rendering him completely immobile for 8 weeks. Getting him home was so horrible I was *thisclose* to laying down in the parking lot and waiting for a hospital van to run over me. Bathing, feeding, changing diapers, all had to be done without moving his hips. He was a 50 pound sack of potatoes that screamed when you carried him.

So with only shredded wheat abs to rely on, it was only a matter of time before I hurt my back. Luckily I managed to get through the worst of Atti’s recovery and now he’s back at school for most of the day, but for the past several weeks I’ve been doing everything I can to avoid anything heavier than my cats and trying not to scream every time I had to shift my weight.

I went to the doctor, bracing myself for another round of “Pat Tresa on the Head” as another invisible complaint rendered me unbelievable. But I had an entirely different experience. My doctor shot my back up with Lidocaine and then handed me a GIANT bottle of Tramadol since I refused her offer of Oxy.

All I have to do is mention that I’m taking care of a kid with cerebral palsy and the prescription pads come flying out. I have more drugs at my disposal than at any point in my entire career of sickness. There was one point when a gynecologist was prescribing me one pill at a time and insisted that he would not treat me until I went to a therapist. When I start giving my history to a GP, I can feel them pushing me off to the side the more I talk.

But now I know. All I have to do to get pain medication is not chalk it up to a lady disease.


Welcome Back Endometriosis. You weren’t missed.

I’ve had to come to a tough realization over the last couple of weeks: The endo is back.

It never truly goes away. Whenever I finish a course of the drugs that put me through menopause I start right back up with the slow growth process. Eventually I have to admit that midol won’t get me through my period. And then slowly I’ll go from having one bad pain day to having a bad pain week when I’m on my period. And then eventually I’ll have pain around the time of ovulation. And now I have to admit that I’m having pain every day.

This really blows.

Aside from the obvious, pain hurts and that sucks, it’s hard to manage my life when I have to be on serious pain killers. Right now I have to wake up and rush through any work that requires my faculties. Any writing, any thinking, any interviews or public speaking, I have to do it all while gritting my teeth until I have to cry uncle and go take the drugs. And then I have to deal with all the guilt and shame that comes along with chronic illness – feeling like a waste of space, feeling guilty for being a burden, feeling intense intense shame over being stoned in front of Atticus and not present for him. Every day I have to decide, do I want to be in pain? Or do I want to be functional? Which is a higher priority? And because a mom taking prescription drugs is such a ridiculous cliche, I try as hard as I can to never let people see me medicated. I’ll talk about it publicly on my own terms, but I don’t ever want a teacher or bus driver to see me altered. And I obviously never drive on medication – duh – which puts another crimp in my life management plans. No trips to Target for diapers or to the grocery store when the fridge is empty.

But what I’m really struggling with right now is the fear. I’m afraid it will get as bad as it was in my 20’s when I was completely disabled. Back when I first started blogging because I was on pain medication every minute I was awake and I could go weeks without talking to a human besides Bear. I lost a decade already to this disease, it’s terrifying to contemplate going back there.

Of course, this time I actually have health insurance. I have a doctor who doesn’t think I’m crazy or that periods are supposed to hurt. I have a treatment plan in place and I just have to wait until the medicine is available at the right time in my cycle. It shouldn’t be much longer before I’m complaining about hot flashes and food cravings again.

But for today, I’m mourning. I’m mourning my own limitations, I’m mourning the pain I feel and all the emotions that come with that, and I’m mourning that I can’t be the kind of mom I want to be. I guess the good thing is that in just a little while the pain medication will kick in and I’ll find it all hilarious.


I’ve been hiding from my blog lately

I have a confession to make: that last entry? Was written weeks ago. I had it sitting in the queue as a draft, and I published it so what followed would make sense, but also because it allowed me to go two more weeks without facing the internet.

I’m sad. I’m very very sad.

And I’m kind of baffled at how sad I am.

My health is pretty darn good, not perfect, but OK. Bear’s job is going really well, I’ve got great friends, I love my work at church. And when my health was at my absolute worst, when doctors were telling me I was crazy and refusing to help me, I was sad, but I worked hard to keep my spirits up. I was sad, but I was never depressed.

I think I’m now depressed.

Not clinically, of course. Just moping through the day with a big black cloud over me. Just whining and pouting and feeling rudderless.

I’m one of those people who always believed they’d leave a mark on the world. I believe(d?) that I will do something important, make a difference, contribute. I’m not so sure right now. I have had such a record string of failure that it’s a little hard for my brash ego to keep on puffing up.

I obviously didn’t get the part, but that’s not even the straw that broke the camel’s back. They decided they wanted to go with a married couple to play Mary and Joseph and this is irritating to me on a few levels. First of all, it seems lazy. A married couple should have chemistry so no one has to worry about acting that out. Latter Day Saints are also so very protective of the marriage vows, that many people can’t stomach the thought of two people that are married to different people to even *pretend* they’re married to each other. Even if there’s no physical relationship involved. I keep ping-ponging between two frames of mind about this: I can’t take the rejection personally because they obviously wanted a couple to play the parts together; or I would have felt better if someone else just had the hands down better audition rather than losing out on a technicality.

Anyway, that was a bummer. But like I said, not the straw that broke the camel’s back. I think that was just time. I’ve been healthy for six months, and I have been able to accomplish absolutely nothing. My time on Lupron is over, I can already feel my symptoms coming back, and I have nothing to show for it.

I’ve been trying to write like I keep whining about, and it is just not working out. I just don’t know one thing about the structure necessary to wrap words around.

*sigh* I’m not sure if I even have the energy up to sufficiently whine. This had just been an incredibly hard year, and I am spent. Between my illness and surgery and doctors telling me I’m crazy, and psychiatrists, and pain pills, and hormones and hot flashes and rejection from every job out there, and not getting the part in the play, and family drama, and everyone around having babies (seriously – 2 SIL’s, 2 close friends, and 3 ward members), job uncertainty, buying a house then not buying a house, losing 40 pounds and gaining 40 pounds all in 8 months, family drama some more, and having no apparent purpose in life….blargh. Sucks.

I just don’t know what I should be doing with myself right now. With not being able to have a baby, I’ve had to really search for what brings me fulfillment and purpose during this time. But this year every single thing I’ve tried has not worked out or failed spectacularly, so I’m left feeling utterly lost and without moorings.


Endo was like, the best diet EVER!

Thanks to my long struggle with endometriosis, I managed to waste away 40 pounds. I was wearing clothes I haven’t worn since my first year of marriage and they were still falling off of me. While I’d be lying if I said I didn’t love the weight loss, it was also fairly scary to me because I knew that it came from being technically anorexic. I would try to eat and I could barely make my way through one of the little McDonald’s hamburgers that come in a happy meal. I’d cook an enormous meal and take literally two bites before I’d be gagging.

After the surgery I started to be able to eat again, but I was trying to be really careful. I knew that if your body is starving, it’s going to store every new calorie as fat. And I really liked my new look, even if it didn’t come about very healthily, so I wanted to do what I could to preserve it.

Then the hormones kicked in and all bets are off. Suddenly the Lupron is making me an insatiable garbage pit and I can not get enough food to satisfy the constant cravings running through my mind. I’ve been known to eat two dinners and then want dessert. I’ll find myself wandering through the house looking for food to shut up the voice in my head screaming “MORE!” The nights are the worst. I crave sugar so badly my teeth itch.

So obviously I’ve gained some weight back, but I’m still not back up to my largest point. I look fine. I’m still wearing all my own clothes, some of them are still falling off of me and others aren’t so much. But I’m really starting to develop a complex. I lost so much weight so quickly and I’m putting so much weight back on so quickly, that it kind of shocked the sense out of me. I always prided myself on being pretty happy with how I looked even though you could never pay me to put on a bikini in public – but not anymore. Now I’m all too aware of every calorie I put in my mouth. I’m debating keeping a food diary and trying diets.

And I’m panicking about the precedent I’m setting. Here I am on Lupron, hormonally eating. Once I get off it I’ll start fertility drugs which will cause me to hormonally eat. Then I’ll get pregnant (knock on wood) which will cause me to hormonally eat. By this time next year I’ll be such a fat butt. Ug.

I really hate that I’ve turned into one of those girls. Who publicly talks about her weight and diets and blah blah blah. And here I am blogging about it. Oy. What a cliche.


Enter Dr. BFF

On Friday we had our first meeting with the doctor who will do our In Vitro. It was terrifying. Not because we didn’t know what to expect or because we were afraid of what we’d find out, we’ve already been through that part of it all, but because we are both pretty comfortable where we are right now and the thought of venturing back out into that war zone is … oh gosh. Am I sure kids are worth it?

If I didn’t have religious convictions that taught me the importance of family, I think I’d just get a hysterectomy and move on. I’d go back to school and either be a professor of something or a writer or a therapist and enjoy all my extra income and the undivided attention of my husband.

But, I do have religious convictions, so I have to find a way to close my eyes and step back out there and try to stay safe.

We looked at a bunch of different options, including a doctor in Beverly Hills who charges based on a sliding scale, and a few doctors who do the whole shared risk “money back guarantee” thing, and cost wise as well as comfort wise, it looks like Kaiser is who we’ll be going with. Mainly because they’re the closest to home and if there is one thing I AM NOT DOING it is living through the dreaded two week wait away from home. And because they charge $11K for everything including drugs up to ICSI and assisted hatching. Those are extra.

Until we actually met the doctor, those were pretty much our only criteria. We’ve learned that in this medical game, we are beggars and can therefore not be choosers.

Today we drove an hour away to Fremont in the Bay Area and met with Dr. BFF. His offices were posh, his receptionist sweet and friendly, his nurse concerned and capable and a fellow crafter who was interested in my project du jour, and not a baby or parenting magazine as far as the eye could see. We waited in an exam room while he reviewed our history and Bear got his first view of The Wand. He could not look away.

Dr. BFF called us in and asked us to tell him our history and experiences in our own way, aside from the clinical stats he held in his hand. I went right into doctor-speak with dates and ratings on the pain scale and whipped out my films and records, which he was obviously grateful for, but what he wanted was for us to get to know each other. He asked us where we each grew up, where our favorite place to live was, our opinions on the Red Sox and urban vs rural living, what Bear’s time in South Africa was like, how surprising it was to him when a blond blue eyed mormon boy spoke to him in fluent Korean, and his most romantic vacation with his wife.

He looked at the photos from my first lap and his jaw hit the ground. I told him that Dr. I’mnotlooking said I was clean as a whistle and Dr. BFF said, “looking at this I find that extremely hard to believe.” I could have reached right across the desk and kissed him on the mouth then and there, but he continued to earn my undying devotion by telling me what I was looking at in the photo.

“This is what healthy peritoneum tissue looks like, smooth, see? See how yours isn’t smooth? Look right here, see that? That’s called a window. That tells me that the endo has buried deep inside your organs. I can’t believe your doctor would have gone in that deep, especially since that thing right there is your ureter, so I would think that you would have continued to feel pain even after the surgery. I’m guessing on your right side, probably especially when you try to have sex.”

Bear and I literally sat there with our mouths open. He just described the past four years of my life by looking at a small photo of my organs.

He then went on to give us a list of all the IVF Clinics in town and told us to check them all out, set us up with a plan to make use of the time I have on Lupron to get everything all prepared to jump as soon as my cycle starts, gave us phone numbers that he could be reached at so we wouldn’t have to drive in for special appointments to discuss test results, told us that we might be candidates for insemination after all (which would cost us a whopping $20), commiserated with Bear about embarrassing semen sample stories, and hung out with us at the nurses station until his nurse came back to get us our next appointment.

When we left his office, Bear and I didn’t say a word until we got to the car. Like we were afraid to wake ourselves up from a very good dream.


Screw you Dr. I’mnotlooking. Now I’ve got NP Dollface.

Today brought my second dose of Lupron and a new doctor. Or Nurse Practitioner to be more accurate. She was a dream. Took me at my word and kept me on my treatment. Then she asked me the dreaded fertility question. Give me a break. Is there any woman anywhere who can go through two laps and still think she’s got plenty of time to mess around with her fertility? I’m fully aware of the fact that I’m a ticking time bomb, thanks.

She really earned my love when I complained of the hot flashes (which have started up like little champs) and she whipped out a pen and paper to make me a list of herbal supplements I could take. Then she dragged me out of the exam room and into her office so she could get me information about the RE’s in the area and inform me that Kaiser Northern California does in fact cover some parts of IVF. In Southern California, once they determined that IVF was my only hope, I just got a good luck and don’t let the door hit you on your way out. Can you imagine? All this time we’ve been stressing about how to pay off law school and house and baby at the same time, and there is a long shot that someone else will pay for the baby! Hooray! I’m trying not to get too excited, because Kaiser is still a business, and why would they cover everything if they didn’t have to, but if they only paid for the medicine that would still be outrageously cool.

I just got back from Youth Conference, which is where we take all the little Mormon teenagers 14 – 18 up to the mountains and talk to them about good values and then watch as they have a big dance so they can meet cute boys and girls who believe the same things they do. It’s great fun. I was thoroughly shocked to discover on Friday night that a switch seems to have been flipped in me and all of a sudden I’m doing freaking AWESOME! I was out there dancing my heart out with the kids like I was 16 again. They all commented on how they can not believe how hyper and crazy I was, when really it was more like me rejoicing that my body wants to move again. I just read in my Lupron literature that the estrogen goes up for about two weeks so symptoms may get worse at first (Yup.) But then the estrogen levels drop precipitously and symptoms should alleviate. (Sure ‘nough)

I feel crazy good. And Bear keeps beaming from ear to ear and saying “I’ve got my wife back!” Now I’m back to the job hunt and amazed that I honestly feel like I can work a job now. I do still have some weakness and exhaustion, but good old Dr. Hero says that’s from the inactivity and I just need to rehab. Plus I’m withdrawing from the years of pain pills so every once in a while I feel like crawling out of my skin while simultaneously having a panic attack, but that’s getting better as I’m weaning myself off the pills. I basically am off pills entirely for pain, and right now I’m just on 1/2 a pill a day for the withdrawal and pretty soon none at all.

So, to sum up: WHOO FREAKING HOO!!!


Dr. Hero saves the day

To recap: we left off with me getting my first dose of Lupron from Dr. I’mnotlooking’s office and recovering from surgery and a chest infection.

Now, some interesting developments:
A couple days after my shot I emailed Dr. I’mnotlooking to ask for more pain pills. I take 4-6 pills a day, which is far inside the recommended dosage. I could take more if I were so inclined. But I’m not. While I’m sure the Lupron will in time work wonders for me, time has not yet elapsed, so I’m left with all this pain to deal with and so naturally, I go to my doctor for help.

He returns my email by replying that he does not feel comfortable prescribing me any more pain pills, he wants me to go to a pain management specialist in San Francisco, and a psychiatrist. This is LITERALLY (as in, I counted) the sixth time he has told me to see a psychiatrist for my pain.

So I take a deep breath, say a prayer that I will be able to compose a reply without chucking my computer out the window, and write back to him that “My pain is real. What do you expect me to do while I wait for the appointment with the pain specialist? You are my doctor and I trust you to treat my pain.”

With my guilt trip successful, he says he will prescribe, but this will be the last time until I see the psychiatrist. I found out later when we picked up the pills that he got in one final ‘screw you’ by only prescibing 50 pills. So if I take 4-6 a day, that gets me through…10 days. That’s really helpful.

By this time I’m sobbing and hyperventilating and ripping out my hair. How dare he? How dare he treat me this way! I trusted him enough to let him look at my Va-nay-nay and this is what I get?

Right then and there I pick up the phone and call the dang psychiatrist. If nothing else, I’ll have someone to talk to about how awful my doctor is. And maybe if I keep this appointment, that will keep my doctor happy enough to continue to treat me. It’s all so humiliating how I have to continually debase myself just so I can get the minimum standard of care.

The receptionist joked that the soonest available appointment was in an hour, and I snapped it up. My sister chose that unfortunate moment to call and so she got to hear all the emotional saga live and her response was, “So is the psychiatrist the doctor’s brother or something?”

The psychiatrist, who I will call Dr. Hero, was tall and in his late 50’s. He had a very good-natured almost big-brotherly vibe to him and at our second appointment he called me “kid” about seven times. I took to him instantly. I told him the whole messed up saga, even explaining in microscopic detail the inner workings of endometriosis and why I was right and I’mnotlooking was so SO WRONG! And in the interests of full-disclosure, I even told him all the red-flags that sent I’mnotlooking down the crazy path. His response:”Sure sexual trauma can cause a painful pelvic exam, but it doesn’t explain any other symptom of endo.” I was in love.

Before I even got halfway through my story he told me to get a new doctor. He said that some people are only in it for the babies and can’t handle any other aspect of OB/GYN, and that many doctors (most of whom happen to be older males) don’t take women’s pain seriously. He told me to get a new doctor and make her a woman.

But won’t switching doctor’s be suspicious? Won’t that stall my treatment? It’s worth the risk.

Does that mean I’m not crazy? You’re not only not crazy, but you are totally sane, managing tremendous pain the best you can, and none of this is your fault.

He scheduled me for five sessions, but after our second session on Tuesday, I don’t think I’ll be using them all. Once he got me fixed up with a new doctor and thoroughly explained to me why I wasn’t crazy (scar tissue is evil), there really wasn’t that much to say. I kept bringing stuff up (Baby showers suck! well of course they suck. Just don’t spend too much time thinking about them so they only suck for two hours instead of 30. My family’s a mess, wanna talk about my family? You’re doing great. You don’t need me.) but we ended up mostly just shooting the breeze for an hour.

I’ll see my new OB/GYN later this month when I go in for my second shot o’ hormones, and hopefully she’ll be kind and not white-knuckle stingy with the scrips. The Pain Management Clinic doesn’t have an appointment until July, and considering that I’ll have been on Lupron for five months by then, if I’m still in this much pain than we might have to revisit the whole crazy issue.


Here we go…

On Wednesday I went and got myself shot up with Lupron.

So far, so good.

My nurse was fantastic, I literally didn’t even feel the needle prick, and by now I’m so used to being poked and prodded that I wouldn’t have cared even if I did. The worst part about the whole thing was just having to have a period before they’d give me the shot. And periods could not suck more in my world.

For the past few days I’ve just been cold chillin’, waiting for the dreaded side effects to come around and kick my booty. Every time I find myself the slightest bit warm I ask Bear, “Is it warm in here or is it just me?” I keep waiting for the hammer of hot flash to drop down on my head. I have had a little bit of heart palpitation, but that’s an easy one to live with. It never lasts long and it’s not terribly uncomfortable.

The antibiotics did their job, and I’d now say I’m completely recovered from the surgery. Unfortunately I’m not yet recovered from the endo, so after all this I’m back to my regular old invalid life. I have been trying to limit how many pain pills I’m taking, mainly because I’m a little concerned about being able to leave them behind.

Let me clarify: I don’t think I’m addicted to prescription drugs. Foremost because I avoided narcotics like a bill collector and the pain pill I do take every day is known for it’s low addictive quality. On this one issue I’d have to agree with the doctor and say it’s all in my head. I’m concerned about leaving the pills behind because I have been in so much pain for so long that I have no faith that the pain would ever not be there. I can’t imagine what it would feel like to not be in pain. Will I even recognize it when it comes? So I’m afraid to not take a pill because they’ve almost become a security blanket, not to numb my feelings or get me to escape reality (my tolerance is WAY too high for that) but simply to do their job and take the edge off the pain.

I tend to be a little overanalytical, ever notice?

So every day I’m trying to go a little longer between doses. When there was no end in sight and every day only brought more of the same pain, there was no reason to be a martyr and feel bad when there was a way out. But now that I’m on the Lupron and there is theoretically an end to at least the pain symptoms, I feel like I need to work harder at taking the bare minimum of pain relief I can get away with. To wean myself off, and so that I can monitor my progress. If I dope myself up constantly, how will I know if it’s working? Or not?

So with that being my thinking, the past few days haven’t been terribly pleasant. There’s a reason why pain management doctors tell you to never skip a dose, even if you don’t feel like you need one right then. Once I cave and take the dang thing, it takes a while to work. And while I’m waiting I’m holding my guts and whimpering.


#@$%**^%^# Doctors!

So apparently that cold I came down with last week was not, in fact, a cold. It was a raging chest infection brought about by the intubation and anesthesia.

After ten days of having glands so swollen I couldn’t swallow, I finally called to try to go to a regular doctor. I thought I had mono again. I had it once in college and apparently it’s been going around at church, not to mention that recovering from abdominal surgery would be the perfect time for something so opportunistic to take hold.

But no. Something else opportunistic took hold.

I was trying to get an appointment just to get my throat cultured. The nurse came on the phone to ask about my symptoms so they could send me off to the right doctor, and with each question she got more and more agitated. I’d had surgery 10 days ago? There’s been a heaviness in my chest? I’m coughing and wheezing? I’m achy all over? Oh Dear. Let me get my manager.

So the manager gets on the phone and asks me all the same questions. Are your glands swollen? Both sides? Are you dizzy and weak? Oh Dear. Let me send an urgent message to Dr. I’mnotlooking and have him call you back.

Having the advice nurse and her manager both freak out at the urgency of my problem freaked me right the freak out. I thought I had a sore throat, and the nurses are running into stat mode like I’m on the verge of death.

A few hours later Dr. I’mnotlooking calls me back, asks if I’m allergic to penicillin and sends off a prescription for antibiotics. La di dah, calm as you please. In fact, when Bear went to pick up the prescription they hadn’t even filled it yet because the Dr. sent it in as NON-URGENT.

I’ve been on the antibiotics now for four days and this thing is not going anywhere. My glands are a little less swollen, but they’re not normal yet and this cough and wheezing are just as bad as ever. But I’m finding reserves of strength that are getting me through it that come from pure unadulterated rage. One minute I’m insane and making up my symptoms, the next minute I’m stupid for not reporting my symptoms sooner. Even Bear blew me off, telling me that I must have just caught what was going around.

It’s maddening. MADDENING. If I wasn’t crazy before all this, I’m sure I will be afterwards.


Today’s a better day

The appointment yesterday actually turned out to be totally anticlimactic. He looked at my incisions, satisfied that I wasn’t infected, wrote me an injection order and got the hell out of there.

Although he couldn’t resist one last dig and asked me if I wanted a referral to a psychiatrist. By that time I’d spent so much time obsessing and analyzing I’d come to the conclusion that psychiatric help might not be the worst thing I could pursue. I’m not caving in to Dr. I’mnotlooking’s suggestions that the pain is in my head. I’ve just realized that living with a chronic disabling illness and infertility is extremely stressful, and if someone’s going to pay for me to talk to a therapist, why not? Therapists are so blooming expensive and getting insurance to cover it is such a chore, that Dr. I’mnotlooking may have accidentally handed me a real bonus.

Of course, the first thing I plan on covering with the shrink is Dr. I’mnotlooking.

As for my upcoming medical treatment, I’ll be getting an injection of Lupron once a month starting on the first day of my next cycle. Which means that I will shortly be going through menopause.

Part of me could not be more thrilled since I know it’s what will cure me, but I really don’t like the idea of hot flashes and night sweats. Bear has the night sweats enough for both of us. Once I start this medicine we’re going to have to change the sheets every night so we don’t sleep in puddles.

I have a friend who’s very in to herbal cures and I’ve been thinking about following her recommendations to reduce the menopause symptoms. Does anyone have any experience with this or know if it’s a problem to take anything while taking Lupron?

The pain from my lap is slowly disappearing, although my abdominal muscles still seem to be as weak as a baby kitten, but now that I’m weaning myself off the vicodin, I’m remembering all the pain that got me here in the first place. It is all kinds of suck that I have to deal with all my endo symptons and the lap symptoms. And as if that wasn’t enough, I seem to have come down with a cold. I’ve been laying in bed sniffing and coughing and moaning from the pain on my abs. Sniff, cough, moan. Sniff, cough, moan. Sniff, cough, moan. I’m just a world o’fun these days.

Now that I’m able to sit up more, I’m trying to inspire myself back into the creating. I’m almost done with a baby blanket I’ve owed my friend the good twin for nearly a year, and Bear’s brother is about to have his first, so I gotta get to work on that one, but I’ve also joined the “use what you have challenge” over at simplesparrow. The goal is to only make stuff with what you already own. No new purchases for the entire month of April. Between the yarn stash and the fabric hoard and the paper collection, I’m feeling this won’t be such a challenge for me. But hopefully it will get me moving on actually making some things.

Alright, that’s enough disjointed rambling for today. Back to bed.