I returned to work this week. My FMLA had expired so I didn't have a choice. Rich's doctors were not happy about it, but I can't please everybody, and we all need to learn to deal with disappointment.
Number One: It sucks that I can't blog about the circumstances of returning to work because it is too amazing not to share. In short, my request for Personal Leave (4 weeks) was denied. I was told to be back at work on Oct 11, or I would be terminated. HR approved my request, but my department director did not. They explained that I didn't realize how difficult this had been on all of them. Am I an incredibly selfish bitch or what!
Number Two: Rich is not yet strong enough to be on his own all day every day. The slightest exhertion winds him, he's too tired to fix his own meals, check his blood sugars, dose his insulin and other meds. Left to his own devices he will choose sleep over food and fluids every time. It's too easy to succumb to perpetual exhaustion when there is no one around to nag you into some physical therapy. It has become amazingly annoying when people ask if I have someone coming in to take care of him. Who would YOU want to assist you with the most intimate daily necessities? What value do you place on YOUR dignity?
Number Three: My workplace has not changed but I have. I feel like the walking dead. Having to be pleasant and interact with certain people is nothing less than exhausting. If one more person asks me how Rich is, my head might explode. How the fuck do you THINK he is?!?! Not much difference from yesterday when you asked, and I explained that he's weak, not eating, taking meds or doing anything he's supposed to do when I'm not there. NO, we didn't manage a flight on the Concord to Lords in France last night, so he's pretty much in the same condition as yesterday and STILL without help at home because I am here.
I just smile and say “thanks for asking.” Each day my smile feels a little thinner.
Guaranteed to make brain cells explode is....”Did you enjoy your time off?” The first time I got that question I believe I may have suffered a grand mal seizure, because all I remember after the question is a blinding light and walking away with a dull ache in my temples.
Now I am prepared so that when I am asked I am able to pleasantly respond..... “Well, I earned a PhD in urine, stool and liver abcess drainage, I have improved my wound and IV skills; I have become a gourmet nutritionist, I'm getting caught up on all my knitting projects, I have learned to ignore dust and any Non-Hazardous materials on household surfaces; I have taken screwing with telemarketers to an art form; and soon I plan to come out with a signature line of Voodoo Dolls. Yep... I would recommend my “Time Off” to anyone!!”
By the end of the day I am exhausted from the non-stop whining, bitching, moaning and complaining that swirls around me non-stop. Everything from the spouse forgetting to put gas in the car to the long wait in the grocery line, to what a busy weekend they have coming up. Really? I try to be invisible during these bitch sessions and keep my mouth shut. I understand it's human nature, but where I stand it feels like Chinese water torture.
And may I say how enjoyable it is to a have a patient get angry with you because you've just told them their test results are normal.....”Then why do I still feel like this?! What's wrong with you people?!?! This is ridiculous....You're telling me no body there can figure out why I'm so tired?!?!” I'd like to explain it's because you smoke, you're sedentary, you're 60 pounds overweight, diabetic not complying to your diet, you're a hypochondriac and you smell funny. Instead, I tell them I'm sorry they're not happy with their test results, and doctor would be happy to meet with them to discuss it further.” I feel bad for them because I sense they would have much preferred a terminal cancer diagnosis. Or at the very least something that had high rightings on the Lifetime Movie Network.
Ironically, I get home, start cooking supper and midway through discover that my refrigerator has died, completely without warning from labs, CT scans, MRI or psychic internvention. I'm trying to diagnosis the fridge, bake the salmon-lobster wheels, and do a pressure cooker full of healthy brown rice and fresh veggies. I'm fantasizing the total fun of taking Rich appliance shopping on a Saturday and mentally calculating the necessary ratio of Margueritas to stores visited. I find myself weilding my wooden spoon like a sword, jabbing the air and frowning horrifically at the dishwasher and stove, much as I did when the boys were young. When one gets out of control you've got to tighten the reigns and reassert your authority with all concerned. For good measure I pop around the corner and growl threats at the washer and dryer. If I still had my dogs, they would be cringing in their favorite spots, watching me with sad eyes and waiting for mommy to be okay again. The dogs are gone. The cats don't give a shit.
I serve Rich his totally nutritious, gourmet, anti-cancer dinner, and make another attempt at the Voodoo/Pentocostal/Metaphysical healing of the refrigerator. Honestly, tho—my heart's not in it. The refrigerator has become just another patient, co-worker, voice on the phone; a crying, whining, cranky, nap deprived toddler requiring food and sleep and comfort and understanding. I want to cry. Not because a refrigerator broke, but because I don't have the energy to deal with it. I'm devastated that something this trivial is threatening my calm.
My brother and his girlfriend arrive like the cavalry. They perform lipo-suction on the coils as I finish cleaning and dressing Rich's PIC line and drain tube. Maybe their fridge first aid will work, maybe not. Maybe tomorrow I'll wake up to a lukewarm mess in the fridge. Maybe it will hang on for a few more days, weeks, months. Time is irrelevant. The bottom line is the shoe is hovering, waiting to drop. One more shoe. Waiting to drop.
I was painfully aware of how bad the house looked when I returned home from work today. Overhauling the fridge while trying to cook dinner pretty much took the situation to a new low. Tomorrow I'll need to tackle the chaos and corral it into a sense of order that would conform to a basic standard of living in a developed country. I want to believe that I'll wake up tomorrow and be ready to accomplish most if not all of the horror that surrounds me. Right now I just want to curl up on the couch and cry. If only I had the energy for that.
Friday, October 15, 2010
Monday, October 11, 2010
A long week
It's been a long week.
By Monday the Reglan seemed to have cleared his system. Up until then we were still at the carnival. Thanks to everyone's prayers, the problem was the medication, and due to the stress on his liver it was just taking longer to clear it. The coughing has stopped, except for the random need to clear his throat which is never successful. He cannot walk twenty feet without getting winded. We're trying to do strengthening exercises of his major muscle masses, but it is very slow going and wipes him out. He's eating better, but still losing weight. He's down to 172 lbs. He started at 225.
As scary as it was to deal with his hallucinations, this new phase is breaking my heart. He looks in the mirror and he cries—not from vanity but from loss. Many people arrive at where he is, but the trip usually takes longer than three months. What he sees represents what he feels and the total lack of energy. The ability to make it from the couch to the toilet in the five seconds requied often fails.
Tuesday we saw Dr McGee. It's good to get an update, but the encouragement he gives us is ten times greater. He promises nothing but somehow makes us believe that we'll get through this and there will be something good for us on the other side of this struggle. He shares Rich's hope and belief that there is still golf in his future. He talks to us about patience and continuing on.
Friday we see the new and improved Infectious Disease doctor in the morning, and the surgeon in the afternoon. Everyone's on the same page. It's just going to take a long time. “For every day you spend in the hospital, it takes three days to recover.” Doing the math, we've got a tough row to hoe.
But there was a bright spot... Rich was approved for a shower. I thought for sure he'd want me to run every red light on the way home and start the water. Oddly, it was a full day from permission granted Friday afternoon to stepping under the hot running water Saturday evening. I sensed he was a bit nervous that he would be steady on his feet, imagining how a fall in the shower would impact our program. I also wondered if he wanted to savor the expectation. The man had not had a shower since July 15th. Such a journey into bliss deserves proper anticipation.
By Saturday evening I had his shower as carefully prepared as possible without totally emasculating him. His PIC line was bandaged with plastic wrap and fully occluded; drain was properly secured; all items in easy reach, safety precautions in place. The first time I put each of my sons on the school bus was no scarier or heart wrenching than watching this terribly thin, frail man step into the shower as I closed the door on the steam filled room.
The first gutteral moan emanating from the bathroom was one of pure pleasure, and I was half expecting it. It sent the cats scurrying upstairs to hide. Half an hour later the cats are sitting at the top of the stairs whining for me to make the strange animal/rain forest noises stop. Since I knew for a fact that he was in there alone, I figured he wasn't having sex. I assumed it was a religious experience. Now I know what the Rapture sounds like.
I sat on the couch and enjoyed another person's shower in a way I never knew was possible.
Every day I learn another lesson on Love.
By Monday the Reglan seemed to have cleared his system. Up until then we were still at the carnival. Thanks to everyone's prayers, the problem was the medication, and due to the stress on his liver it was just taking longer to clear it. The coughing has stopped, except for the random need to clear his throat which is never successful. He cannot walk twenty feet without getting winded. We're trying to do strengthening exercises of his major muscle masses, but it is very slow going and wipes him out. He's eating better, but still losing weight. He's down to 172 lbs. He started at 225.
As scary as it was to deal with his hallucinations, this new phase is breaking my heart. He looks in the mirror and he cries—not from vanity but from loss. Many people arrive at where he is, but the trip usually takes longer than three months. What he sees represents what he feels and the total lack of energy. The ability to make it from the couch to the toilet in the five seconds requied often fails.
Tuesday we saw Dr McGee. It's good to get an update, but the encouragement he gives us is ten times greater. He promises nothing but somehow makes us believe that we'll get through this and there will be something good for us on the other side of this struggle. He shares Rich's hope and belief that there is still golf in his future. He talks to us about patience and continuing on.
Friday we see the new and improved Infectious Disease doctor in the morning, and the surgeon in the afternoon. Everyone's on the same page. It's just going to take a long time. “For every day you spend in the hospital, it takes three days to recover.” Doing the math, we've got a tough row to hoe.
But there was a bright spot... Rich was approved for a shower. I thought for sure he'd want me to run every red light on the way home and start the water. Oddly, it was a full day from permission granted Friday afternoon to stepping under the hot running water Saturday evening. I sensed he was a bit nervous that he would be steady on his feet, imagining how a fall in the shower would impact our program. I also wondered if he wanted to savor the expectation. The man had not had a shower since July 15th. Such a journey into bliss deserves proper anticipation.
By Saturday evening I had his shower as carefully prepared as possible without totally emasculating him. His PIC line was bandaged with plastic wrap and fully occluded; drain was properly secured; all items in easy reach, safety precautions in place. The first time I put each of my sons on the school bus was no scarier or heart wrenching than watching this terribly thin, frail man step into the shower as I closed the door on the steam filled room.
The first gutteral moan emanating from the bathroom was one of pure pleasure, and I was half expecting it. It sent the cats scurrying upstairs to hide. Half an hour later the cats are sitting at the top of the stairs whining for me to make the strange animal/rain forest noises stop. Since I knew for a fact that he was in there alone, I figured he wasn't having sex. I assumed it was a religious experience. Now I know what the Rapture sounds like.
I sat on the couch and enjoyed another person's shower in a way I never knew was possible.
Every day I learn another lesson on Love.
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