Wow, time has sailed past me and I haven’t even blinked. I think the drugs really are starting to kill my brain cells because I’m apparently experiencing lost time.

It’s been a really rough month health-wise. After my week of doom I cockily assumed that I’d have a few great weeks. We haven’t been able to parse out the logic of exactly how birth control pills are supposed to be helping me, so Bear and I were thinking that maybe my symptoms have been so bad because it’s been so long since I had a period. And maybe after I do have a period I’ll be bounding around here with more energy than I know what to do with.

Not so much.

I made Bear move the tv into the bedroom during my period week so I could be as comfortable as possible in my misery, and as soon as I had him move it back to the living room, it wasn’t more than two days before I ended up back in bed.

I hate doing this for a number of reasons. 1) My normally incredibly isolated cabin fever world of never leaving my apartment distills down even further into my incredibly isolated cabin fever world of never leaving my bedroom, and 2) Although Bear is normally an incredibly compassionate and supportive and caretaking husband, when the tv is in the bedroom, he shuts down. No dishes get done, no laundry gets done, no garbage gets taken out, no cats get cleaned up after. So that once I’m up to moving around again, I’m buried underneath a mountain of sludge. That sucks.

But if there is one lesson I’ve learned through all this nonsense, it’s that I have to recognize and honor my limits. So my OCD self has had to learn to deal with the sludge. It’s good for me, right?

I’ve started recording an audio tape of my symptoms. I think someday I’d like to write a book about this, so I need details. It’s made me notice another symptom I probably wouldn’t have found otherwise – my shortness of breath. I can barely talk without getting winded, so now the tape just sounds like me practicing my new career as a phone sex operator perfecting my heavy breathing.

The bright spot in all this is that I work with the teenage girls at church and I absolutely love it. And they love me. This is what I save all my energy for throughout the week. I’ll go into more detail about this later, but I’ve been running the last couple of activities and I’ve been amazed to see how much I can accomplish out of sheer willpower and adrenaline. In fact, I might get to go to Girls Camp with them this year and sing dorky camp songs and listen to them all cry about how awesome God is and how much they love each other. I’d put up with just about any pain to be there for that. I think that would feed my soul for a long time.

The only way to treat my disease, short of surgery, which I can’t have because I have no health insurance and it costs $42K otherwise, is to stop the endo from spreading as much as possible, which means eliminating my period. There are really expensive drugs you can go on that put you through menopose [dangit, I know that’s not how it’s spelled but I can’t get access to that part of my brain!], or you can go on birth control pills and just never take the little green pills. Because I am broke, I use bcp’s.

Eventually of course, you do have to have a period. And so after about 5 cycles, this week is the WEEK OF DOOM!

Accordingly, I’ve been stoned out of my mind for the past few days. I can’t even focus my eyes.

I realized I hadn’t updated my blog in a while, and I came up with a topic for an entry, but as soon as I sat down to write….poof. Gone. Lost forever with more and more of my brain cells.

Sometimes I wonder which is worse, the pain or being high all the time. I hate being sweaty and stupid and drooling. I’d make a terrible junky. As far as I understand it, that’s all part of the appeal.

Lately I’ve had to completely revise my expectations of myself. A lot of the time I can’t seem to get those new rules in my head, but I’ve been getting better and better. Once upon a time I used to work three jobs. Now all I have to do to consider it a productive day is wake up, leave the bed, prepare dinner and do one daily chore. Bonus points if I do any yoga. And at night we usually go on a walk so I at least leave the house once a day.

There are lots of other things I want to be doing, but I don’t often have enough strength to do them.

Yesterday I woke up at about 1 in the afternoon (another late night the night before), I did one load of laundry, vacuumed the house, did a very little bit of yoga, made dinner, and then I collapsed on the couch. I try to avoid the pain pills during the day, but I had to take my first one at about 3 in the afternoon. It didn’t work. Jared made it home, we ate, and then I took another pill – all I’m allowed to have in one six hour period – and it still didn’t work. I had such shooting pains throughout my chest and back and abdomen that I couldn’t breath and Jared had to throw me in a bath so I wouldn’t lose it entirely.

It really sucks that that’s all it takes to send me overboard.

Today I’m hanging close to the couch. I have about five knitting/crochet/crosstitch/etc. projects going on at once that I rotate through whenever I get bored with one, so that’s all I’m going to do. It at least creates the illusion of productivity without the hassle of, say, standing up.

I ran out of pain pills yesterday so I had Jared call over to refill my prescription. He asked me to make the phone call while he worked on something else and I flat out refused. One of my many neuroses, I refuse to make phone calls I can get out of.

So he called the pharmacy and they told him they wouldn’t be able to have it ready until 8:00 at night. We figured that would be just fine since I was already properly medicated and we had dinner a cookin on the stove. A few hours later we finish watching The Amazing Race (hooray! The self-righteous couple is gone! Hooray! Joyce was a rock star and shaved her head!) and then walked across the street to the drug store.

Except…duh duh DUHHHH…the pharmacy closed at nine. And I proceeded to have a flaming panic attack right there in the candy isle.

The thought of what a night without medicine could be like was absolutely terrifying. As in made me a crying hysterical mess in public at the thought of being trapped in gut-wrenching (literally) pain and no help in sight. Bear being the good husband that he is calmed me down and reminded me that I had already taken my pills for that night, my mornings are usually pretty good, and all I had to do was walk across the street by myself the next day and it would all be OK. It sounds completely reasonable, but I knew I had no way to count on a pretty good morning, so I was still a wreck.

But I made it through. Jared was right. Thanks to the mystical magnet mattress, it’s now 4:30, I have yet to take a pill, I picked up my prescription and scoured the kitchen. And I’m dressed and ready to go to hang out with the young women tonight. We’re seeing Robots.

It might seem like I completely overreacted, and I probably did, but not without precedent. When we lived in New Hampshire my health wasn’t quite so bad, but I still depended on Bear’s folks to get me the medication I needed. At one point I ran completely out of pills, and we had to wait for them to cross the whole country in the mail before I could find relief.

By the time they arrived I had been in a significant amount of discomfort for a straight week with nothing more than advil to help me out. After ignoring the warning signs for a week, my body went into red alert shut down mode with pain so sharp I could not breath, I was throwing up and crying and screaming and thrashing around. Pain had made me in need of an exorcism. We finally had to go to the hospital, which turned out to be closed. CLOSED! Our only option was the emergency room which I just couldn’t bring myself to do. My mom was an ER nurse and raised us on the nightmare costs you incur from just walking in the door. Luckily, when we came back home the mail had come and there were the pain pills, waiting for me. And I lived to tell the tale.

I have a real love/hate relationship with those dang pills. I depend on them to keep me from ripping out my uterus with my teeth, but I’m always panicking I depend on them too much.

I just got back from 5 days in SoCal to attend Bear’s brother’s wedding. The wedding itself was awesome as Bear’s bro is truly in love and Bear’s new sis is the best thing to happen to that family since yours truly, but the three days leading up to the wedding were crazy stressful with all the last minute wedding prep.

I love Bear’s family, so it was great seeing all the aunts and uncles and cousins and so on, Bear got to talk a LOT of shop with people who may be able to finally give him a break, and I worked my butt off until I was so sick I threw up all night long.

I just can’t get it through my head that I have a crippling disease. I know what I’m capable of when I’m healthy. When I’m 100%, I am a machine. I am a multi-tasking, structure-creating, world-organizing, three-job-having, anal-retentive machine. So I expect myself to be able to function at that level of productivity at all times. And then I have to back out because I don’t have the strength to sit in a chair, and that just ups the flake factor that I fight against so hard that I take on too much in the first place. It’s a vicious cycle.

I try to plan three times as much as a normal person would to make up for this. I have a strict schedule for household chores, I plan and plan and plan so that I usually have no more than one obligation a day. If I have a meeting for church, I clear the rest of my schedule so I can be a functioning human being skating by on adrenaline and will power and then crash when I get home. The night of the wedding my teeth started chattering and wouldn’t stop for an hour. Bear had to hold my jaw down because my teeth were hurting. I asked my doctor (my father-in-law) about it and he said that was my body letting off adrenaline like a whistling kettle lets off steam. I had pushed myself so hard to make it through, that by the end of the night when I finally allowed myself to relax, my body completely spazzed out.

Now that we’re back I have to get caught up on the obligations I missed. I don’t have kids, I don’t work, I NEVER leave my house for vacation if it’s not clean, so the obligations were not tremendous. But nevertheless, I was completely overwhelmed by them because I felt the pressure of undone things just weighing on me. I tried to explain to Bear how I felt and I told him I felt like it was finals week. He gave me this look like I just told him I was taking him to the planet Zarnon.

Somehow I managed to do it. I did three loads of laundry; created a binder, updated the calendar, made a phone list, and researched future activities for my church volunteer work; returned the rental car; went to the post office; returned the library books; paid the bills and bought printer ink. To a normal person, that probably sounds like one full day. For me, that was two days of such enormous productivity that I feel like I just climbed Everest.

I’m starting to be able to relax now, but I still have 8 books waiting to be reviewed and a whole bunch of organizing to do around my studio, not to mention all the stuff I’ve been meaning to ebay for weeks now, but I’m just not going to think about that today.

With all our recent setbacks, Bear’s been after me to get a job. Who am I kidding, I’ve been after me to get a job too. When I’m staring down all the bills we’ve racked up and then I lay on the couch all day, it’s pretty hard to feel good about yourself.

But I have the benefit (benefit?) of knowing all too well what my physical limitations are. I feel the pain when my guts are boiling. It’s my legs that give out on me when I try to stand. It’s my head that hits the ground every time I pass out. Bear just sees a relatively normal looking chick who can still talk (way too much) and he listens to all my big plans, so I can’t really blame him for thinking I’m capable of more than I am. Because *I* think I’m capable of more than I am.

I work with the teenage girls at church and I LOVE it. Teenagers are awesome. Especially Mormon teenagers because they’re sassy and full of attitude *and* dorky goody-two-shoe kids. How can you not love a sassy dork? So in a few weeks all the kids in the region get together for Youth Conference, which is a yearly event where the kids go to classes on how to stay goody-two-shoes and hang out with other goody-two-shoes. This year we’re going on a great big nasty hike while pulling these wagon thingys called handcarts as we gain an appreciation of what the pioneers crossing the plains went through. I was so looking forward to two straight days of hanging with my girls and talking talking talking about their little lives as we walked through the woods, until Bear finally said to me the other day, “Um, Reese? How are you going to walk for two straight days when you can’t even walk a block down the street?”

Oh, yeah.

That’s right. I’m an invalid. I remember now.

I so desperately *want* to be capable of more, that it kills me to have to say no. I can do amazing things just by adrenaline and sheer force of will, but only for short periods of time. In fact, most people in my life don’t even know I’m that sick because I can fake it for about three hours at a time, and then I go home and collapse.

So today I finally told Bear that I’m giving up the job search. There’s nothing out here for me anyway, but I can’t take some full time administrative assistant job where I have to call in sick every other day. How am I supposed to work a full time job when I can’t even walk a block down the street?

Meanwhile, I still have scary bills staring me down, so I gots ta get creative. Bear and I have been trying every Cream of Mushroom soup recipe I can find and you know what? That stuff sucks.