Archives for May 2005

I’m so freaking bored

Seriously, how do people on bedrest do it? I’m going out of my mind!

Of course it doesn’t help that it’s been in the 90’s every day this week and our apartment’s central air is so crappy that it doesn’t seem to make it to the bedroom. I sweat like a pig everyday until the sun goes down and I can open the window and pray for a breeze. I have to get up every few hours to hose myself off and then I eat my weight in my new obsession – root beer float flavored frozen yogurt.

I’m probably better suited to the bedrest than most since I’m a crafty gal. I’m currently crocheting a bag, knitting a scarf, and crosstiching some stockings, plus I’ve got some word searches and plenty of books, and a TV in the bedroom at the moment, and none of those things can hold my interest. I’m sick to death of all of them.

I think I just need to spend some time in some decent air conditioning and my crankiness may go away.


Fighting Anxiety

I’ve been feeling vaguely panicked all day today. So much so that I haven’t done one dang thing. I just keep wandering from room to room, spending a couple minutes on moving the phone to the charger, putting a towel in the hamper, petting the cats, and then moving on. I’m so unsettled I can’t even just lay down.

Once I finally forced myself onto the couch, I realized that I’m hurting quite a bit. The anxiety I’d been feeling had completely covered it.

There comes a point where the pain just stops making it to your brain. When the pain is especially extreme in one moment, you might pass out. When the pain is extreme constantly, you begin to compensate and for brief moments it might recede into the background like music. But it still makes its presence known. I can’t seem to breathe right, I’m weak and tired and dizzy, just like I might not be able to make out what the music is, but it could still keep me from communicating effectively.

So all day when I’ve been feeling restless and panicky, it’s really because I couldn’t breathe. And why couldn’t I breathe? Because the pain was interfering with my body functions. Honestly, sometimes it’s like Chinese water torture. It’s not that the pain is always as extreme as it could possibly be, but the fact that it never. freaking. goes. away. makes it so much more intense than it should be.

Sometimes it makes me feel claustrophobic. Like this broken body I inhabit is a sarcophagus I’m trapped in. It’s that feeling of constriction and lack of control. I am bound by this pain and there is nothing I can do to stop it. No amount of baths or cool washcloths or frozen yogurt or heating pads will truly just make it stop and set me free.


Little fuzzy brats

I have two cats that I’m obsessed with. Two ragdoll Himalyans named Jem and Cheetara. They’re my babies, even though I recognize that makes me the crazy cat lady.

Because of their breed, they are the best pets ever. Ragdolls get their name for being so incredibly docile that they just drape themselves over your arms like an old fashioned rag doll. We call them the puppies because they behave nothing like cats. They greet us at the door, they sleep in our bed, they play fetch, go on walks, and the best part is that I don’t have to follow them around with a plastic baggie to hold their poo.

Jem is Bear’s cat, she adores him. She rarely cuddles us, but she has this weird habit of loving to groom people. Whenever we have company over she’ll hop on the back of the couch and try to lick their heads. And whenever either Bear or I get out of the shower she’ll yell at us until we go to the dresser to get our underwear where she’ll jump on top to lick the water from our hair. This morning she got so carried away she actually climbed on top of my head and down my naked back, when she started to slip off and dug her claws in on the way down. I have a huge nasty bloody cat scratch right on the front of my chest from my collarbone to my armpit. Of course it’s right exactly where my bra would lay and it’s too fresh and painful, so I’ve had to go around the house topless today.

I think she did it on purpose to please her favorite Bear.

My cat is Cheetara, and she is the most affectionate cat I’ve ever seen. Earlier today I was laying in bed and I picked her up and held her like a baby. She looked up at me with those huge Puss in boots eyes and put her paw on my face. Bear thought he was going to go into sugar shock the scene was so sweet.

Right now they are both in heat. Which ups the cuddle factor twice as high. They never leave my side now and are screaming for attention. Every time this happens I feel like I’ve got a teething two year old and by the time the week is over I’m ready to throw them out the window. Bear comes back from work and I throw the little mutts at him saying, “You deal with them for a while, I’m sick of em!”

I find it to be supremely unfair that they are so regularly in heat while I can’t get pregnant. Just rub it right in my nose and then twist the knife in my heart while you’re up there.

I can’t help it, I still love the little buggers.


Today I want to shoot Pollyanna in the head

I think I can safely say, with no false modesty, that I am a freaking WORLD CHAMP of positive attitude. Here I have a literal cancer* running my life, destroying my health and complicating my marriage, and I am almost always the one telling everyone else around me to, “cheer up, I get to knit all day, Whee!”

*endo is a cancer in the mutated cells sense, not in the malignant metastasizing sense. So it falls in the category but it won’t kill me, no matter how much I hope for it. Besides, it sounds gloomier, and today that’s what I’m after.

Today I have run smack into the wall of crappy outlook and I think I’ll stay here slumped at the bottom in my little self-pity puddle for a while.

It was probably the diarrhea that set me off. After weeks of constipation so bad my bum would bleed every few hours, today the pendulum swung to the other side as I gripped my guts as hard as I could, just trying to keep them from exploding through my belly button. My abdomen is ugly enough with the bloating and the stretch marks from my last laparoscopy and the burn marks from living with a heating pad clamped to my middle 24/7, I could really do without the fingernail claw marks, thanks.

As uncomfortable as all that is, my real problem lately has been with Bear. We’ve had a couple discussions lately that have not been at all pleasant for me, but he needed somewhere to go with all the garbage this disease forces on him. In accordance with my Pollyanna attitude, I tried to draw him out, to be the big brave person so he could vent all of his feelings about what he has to deal with. Turns out I overestimated myself. Once I got him going there was no stopping him and it didn’t take long before I was begging him to talk to our Bishop instead of me so I wouldn’t have to hear about how I was making his life suck.

I completely get that this disease affects him too, that’s why I started the conversation in the first place. He has to work a full day and then come home and do everything for me, including change my clothes and occasionally bathe me. All the while he has no real evidence that there’s anything truly wrong with me, he just has to take my word for it when I say, “Bear, be a dear and bring me more pills, would you?” Or, “Oh, I can’t do the dishes, oh ow, the pain. Bring me a cold drink?” If I were in his shoes I couldn’t help but wonder if my wife was milking it.

Not to mention the lack of sex. Oh don’t even get me started on that.

Yesterday he had a really rough day at work, but not half as rough as some he’s had, just a run of the mill bad day. Then he went to the bank and discovered we are OUT of money until the 25th. And we haven’t gone grocery shopping in weeks. He came home so sour and depressed, I couldn’t do anything to help him. I ran to the kitchen and ransacked the shelves and came up with a menu to get us through the week (it consisted of peanut butter saltine cracker sandwiches, but we wouldn’t have starved), I came home early from Young Women’s, we watched all his shows together, nothing helped. And if Sydney Bristow kicking bad guys butts in a tiny dress won’t cheer him up….we’re in some serious trouble here.

Finally I grabbed his face and said, “Dude, I need you to let it go. We’ve got bigger problems than money.” Even that wouldn’t penetrate his depression shell, until I started crying because I was so severely positivity dehydrated I couldn’t come up with one more word.

I think the best lesson we’ve learned as a couple through our soon to be 6 years of infertility, family troubles, unemployment, moves, chronic health problems, operations, career changes, etc. is the good mood give and take. Bear had been depressed all day and when he saw me crack, he recognized that his turn was over and now it was my turn to be attended to.

Once he gets home we’re going to try to see Star Wars. Although in Modesto, CA, home of George Lucas, the theaters are freaking INSANE. Maybe I’ll drown my sorrow in light saber battles, maybe they’ll be sold out and I’ll have one more guest to my pity party.


My latest lifeline

The only thing I’ve been doing lately that involves leaving my house has been my calling at church. I work with the teenage girls 12 – 18, which means I teach them on Sundays, and every Wednesday we get together for “activities” which is what we mormons call youth group.

This has been AWESOME. I love teenagers. They are the coolest. And they always think I’m the coolest because I think they’re the coolest. The other women I work with right now are great, but a lot of women hate working with teenagers because they don’t know how to relate. They try to get all rigid and controlling, when all you really have to do is just relax and have some fun with them.

It’s been incredibly rewarding. I have very little energy throughout the day, and what I do have I devote to working for these girls. I make calenders, research future activities, make crazy ornate handouts, all because it’s just so nice to have one area where I’m needed and I can actually step up. A paycheck won’t give you a hug and come visit you before prom so you can see them all dressed up. A paycheck won’t comment on how cute you always look and ask for fashion tips, or help organizing her backpack, or come to you for help and advice and make you feel like you still have something to contribute to the world.

I’m actually surprisingly okay with not leaving my apartment most days, but these girls give me the boost I need when I’m starting to feel stir crazy.


Let’s see if Oprah listens

Not being able to leave my bed has made me very grateful for Oprah. Daytime television is absolutely dismal, but I can always count on something entertaining from 4 to 5 pm.

Today’s episode was a rerun of a woman named Stacy who shared her whole weight loss experience with the show, and the reactions of the audience members she touched. It just put a thought in my head that if I followed her example, and laid myself wide open to share this disease and my experiences and struggles and symptoms and challenges, then maybe I could create some good.

When I lived in Orange County, I went to church with about ten or twelve other women who were trying to get pregnant at the same time I was. So one day I stood up in the middle of the meeting with my little hands shaking and suggested that we all get together and talk about our experiences. Now there are only two of us that haven’t had kids and I really feel like I can claim part of those blessings by reaching out to the others and lightening their load. That time was such a time of joy for me, feeling like I was using my pain for some productive end.

So I wrote a little letter to Oprah suggesting I come on her show and explain myself. I doubt very much that anything will come of it since I googled “Oprah endometriosis” to see if she had done a show on it and found message board after message board full of people who had been organizing letter writing campaigns to get this issue addressed. I doubt that my little note will be the one that finally gets the attention, but at least it made me feel like I was devoting my energy to productivity today.


Just for the record…..Ow.

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.