Wednesday, May 18, 2016

Something Is Wrong With The Body

Over the last six months I've grown progressively sicker. It really started two years ago, but didn't kick into high gear until the last six months. And even then, I didn't see what was happening. I was doing what we patients often complain about doctors doing, and treating my symptoms individually as they popped up. And I'm great at that. Researching, refining my nutritional intake, my exercise plan, my stress coping mechanisms. Adding a supplement. More sleep. Less sugar. No sugar. No caffeine? No. Add the caffeine back in. Yet I continued to feel worse.

The anxiety got better- much better- but the symptoms started burning in hot patches around my body, little fires: pain in my arms and legs, waxing and waning. (Magnesium, B and D, dehydrated? Too much running? More leg support.)

Fatigue. Slowly creeping, drowsy, not enough sleep, can't sleep well, sleeping, sleeping...tired. So tired, all day, Suddenly I realized a week has gone by where I've napped for TWO HOURS every afternoon, and wake still tired. Always tired. Bone tired, so tired that holding my eyes open is difficult, and I close them standing in line at the grocery, or at a red light, for a moment's relief. (Anemic? Ferritin low? B, D, low? Too much sugar? Hashimotos acting up?)

Swelling. My eyes, hands, legs, swell. My eyes swell so much that I wear sunglasses on overcast days indoors at the store or Starbucks, picking Ever up from school. I don't want people to think I'm a bad person. Why would they think that? I don't know. It's my first instinct, fear. They will think I am a bad mother who stays up all night, or an alcoholic, not taking care of my child. This bothers me so much that I worry about what the cash register thinks, ringing up my grocery. I feel like he or she is wondering "What is WRONG with this woman?" Why do I feel so guilty for being sick? I really don't know. 

Abdominal pain. My abdomen swells. I look eight months pregnant. Ever asks me if I am pregnant. It hurts. Bright spots of pain light like a brand pressed into one spot: here, on my left side, there, on my right side- pain so bad I think I might have appendicitis, until it stops. Then pain over my belly button, hard deep pain that radiates to my back like a tendril snaking through the muscle and then leaking poison through the open mouth of an endometriomal lesion. I imagine the tissue hissing and smoking slightly as it turns brown. My last surgery, the doctor said I had lesions all up rib cage, my uterus, my ovaries, the tubes. And between my organs, long bands of hot pink or white scar tissue, adhesions, tugging things not meant to be tugged.

image from endofacts

Pain pain: pain my arms, legs, back, abdomen, coming and going. 

My insurance 'lapsed'. Such a benign word, easy in the mouth. We couldn't afford it, so it lapsed. Of course, immediately after I needed to see the doctor. I have a hardness, if you press deep enough, you can feel it under my aorta, which pulsing happily on top of whatever this is. The doctor felt it. "Well," she said, "if you had insurance I'd have you do an MRI. Or colonoscopy." We both sat for a moment. "What about an ultrasound?" she said. Although we both knew that was mostly futile, I did it. An ultrasound cannot see in the bowel, as it is filled with air, and an ultrasound cannot pick up endometriosis, if that is what is growing there, or scar tissue, unless it was thick enough, which it rarely is.

Ultrasound came back all good. And that is something. All the organs it could peer into pulsed back happily, working fine. Gallbladder, liver, all those juicy things lying inside of me, and the aorta itself gushed blood back and forth as it should. My bloodwork looks good. That is something.

And then the last two months, where I've gotten worse, it seems, every passing day. Some days are all right, meaning I feel OK and only take one nap and feel relatively awake otherwise. Some days are terrible, and I can barely wake up, I sleep off and on all day, and slosh in nausea and dizziness. So many options for what can go wrong with the human body, so many guesses! Could be my gallbladder and endometriosis. Could be just endometriosis, infiltrated to bowel. Could be intense perimenopause. Could be pancreatitis! So exciting. It could be the worst thing. I can't go there, because what the fuck am I supposed to do? Freak out? I already have that covered. Smothered.

My last excision surgery for endometriosis was around 9 years ago. 5 years ago, I had a C-section, my first, with Ever's birth. C-sections can spread endometriosis- a fact I didn't know at the time. The cells get washed with the waves of tugging internal tissues and blood, pulled into foreign shores, like my guts. 

So that is possible.

All I know for sure right now about my body is that I am very sick, getting sicker, and something is wrong. We plan on getting insurance next month. No one is qualified for CA Covered Care anymore unless there was an emergency to explain your lapse. We didn't have an emergency. No tornado ripped through our roof, no one was injured on the job or knocked up. Just poor, sometimes more so, sometimes less. 

I am eating vegetables, fruit, beans, nuts, and a small amount of fish or chicken. I take the vitamins. I do the exercises. I breath the infuser's essential oils. 

I am in a period of anger right now. I am deeply sad and angry that I am incapable of writing for five hours straight. Finally, my life is in a place where things are lining up. My book is almost done with my final edits, ready to be read by the agent. Writing jobs are happening, I am being published every week, and paid for it. Ever is in school all morning. And the last month, I often spend that time blinking like a fish in front of the computer until I give in and go back to sleep.

And yet I'm so excited about life: so many things fascinate and propel me! There is so much to do, so much to learn, and I love my family, I love being with them. When I feel well, there's almost NOTHING I cannot have a good attitude about. I have worked damn hard over my life to have a good attitude. I won't lose it because of this. But right now, it's temporarily winning.

Just for a little bit, I'm going to cry a lot in the bathroom, and feel angry. 

When I lie down, I often have a hard time falling asleep because despite how exhausted my body is, my mind is so awake. I think of all the essays I want to write and get excited. I think of the yard work I want to do, how cute I want to make my backyard, and I get excited. I think of the things I want to do with Lola and Ever and feel excited. I think of running and feel excited. I think of Mayan ruins, and studying their ancient culture more- the books I'm reading, the documentaries I watch at bedtime- and get, you guessed it, excited. So much to DO! I don't want to be SLEEPING. 

So for now I lie with my eyelids flickering and struggling against the weight of my own body, waiting for what is next. Patience, grasshopper.

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