Monday, March 23, 2009

I am sitting on the couch, doing my fourth nebulizer treatment today, instead of playing games with Bettina at her cabin. I am here because I left. I left because I felt I had no other choice. Yet I know I made a decision my dearest friend didn't understand...which made my departure all the worse for me.

I had the best plan. I would take off an extra day and spend last Monday through Thursday packing a bit at a time each evening and then leave early on Friday morning so that the leave-taking was not too difficult. One of those tasks was to put the birds in the spare cage I planned to take with me to the cabin and then leave it at Bettina's house to make future visits easier. It was only one of those tasks that did not happen because I worked 42 hours between Monday and Thursday. No evening packing. No evening planning. No "new" cage practicing.

By Thursday evening, I was convinced that I was too tired to go to the cabin. It would be too much work, too difficult. I was overwhelmed by all that needed doing and was actually dreading the visit. I had spent the night before waiting for Bettina to call me, but she did not. So, when she told me Thursday evening that she was going to have company at the cabin on Sunday, I just couldn't believe it. I told her that I didn't have the energy to being with company. I just wanted to hang out in my pajamas and play with the children and her. I then said that I could just leave the cabin for a while or stay in my room. After hanging up, I tried to start packing and only ended up crying at the thought of hiding in a room at her cabin and all that I had to do just to get there. I called Bettina back and told her I just need to give up the visit.

Friday, I slept until 3:17 PM. I couldn't really picture a whole week off at home and was wondering what I was doing when I read a letter Bettina had sent me. She wrote out the entire book of Philippians for me, weaving in my name and things that we had done together. I was overwhelmed by the gift of Scripture and called her and asked what she thought about my still coming.

She had already decided to go to the cabin with her family, so she changed her plans again and waited for me to get to her home while her husband took the children on up to the cabin. We ate pizza and watched a DVD and made it around 11:30, I think.

But the next morning Fancy fell in the cage and her her wing. She was bleeding and ultimately lost 32 feathers, two thirds of her entire wing. All that is left is this stubby thing that still has a few feathers twisted in the wrong direction. I was horrified. If you remember, Madison was injured when I stayed with Bettina and her family a year ago Thanksgiving. I didn't want to lose another bird in an horrible accident.

We played some games and watched some DVDs and cooked a tasty meal and I napped. Yet I also hear three things that hurt. Bettina would say I took them personally, when I shouldn't, but I heard that my conversation with her husband was boring, that staying up late playing games was ridiculous, and that reading the bible with me would be like placating a whim. I went to bed hurt.

Sunday, I awoke with an asthma attack that frightened me. My oximeter was blinking because the batteries were running low, but it still read 84 at the height of my attack. The shaking from the medicine was worse because I had not eaten.

The night before, I had learned that Bettina and her family were going to church the next morning. We hadn't gone last year so I thought her company was just coming for lunch. She and her husband stopped by a store on the way to get me batteries, chloroseptic, and some toilet paper and she called to see if I wanted her to come back. I did. I wanted her to come desperately. I didn't want to be alone with my worry over Fancy and my fear that comes when I struggle to breath. I hate being alone in the ER. I've asked three different people if they would come and stay when I am there over the past year. All three said that they would. None of them came when I called. But I told Bettina that she should go on to church.

I got control of the attack, but not before my chest was sore and my body was trembling from the Epipen, a round of inhalers, and two nebulizer treatments. I dozed some and then listened to Bettina and her company visit.

I thought they were just coming for lunch, but by 3:00 PM, I couldn't stand how I felt at being holed up in the room anymore and started packing. I wanted to take Fancy to the vet. I wanted to go home where I could be me and it would be okay.

I pretend at work every day. I pretend I do not hurt. I pretend that I feel well. I pretend I understand when I fighting confusion. I pretend that I am stronger than I am. I pretend that I can do things that I shouldn't. I pretend I do not mind being given the tasks of an assistant when I am supposed to be a communications manager. I pretend that I don't mind having every single thing I do being controlled and approved prior to, during, and after I finish it. I pretend that it doesn't bother me that my skills are not being used even as I watch them slipping away. I pretend. I pretend. I pretend. I pretend.

I have been working long hours because they are needed and I will not jeopardize my job. I cannot afford to be out of work. I absolutely cannot afford to not have health insurance. Yet it is so very difficult to work full-time with MS, and it feels as if working overtime is practically impossible...like clinging by my finger tips off the edge of a cliff. How long can I hang on before I fall?

I tried to see a neurologist for my vision problems and he refused to see me. I tried to chase down the asthma with the pulmonologist and was told my violent attacks were "half" asthma and half something else...GERD, allergies...a "learned" response. No GERD. No allergies. Does she really think I am doing this to myself? It is one thing to be diagnosed with cough variant asthma, it is a totally different thing all together to actually get treatment for it. No one understands the coughing part! I tried to make my back feel better with physical therapy, only to hurt more and wind up with nearly $5K in bills that the insurance company denied as "out-of-network" when the clinic was listed on its website. I tried. I tried. I tried.

I am tired all the time. I hurt all the time. My vision blurs all the time. I get confused all the time. I struggle with words, thought processes, and being oriented to time and place all the time. None of that is going to change. More likely, it is just going to get worse.

I spent last night in the ER, coughing and gasping and hoping that control would come soon so that I could get back to watching Fancy breathe. I spent last night in the ER feeling desperately lonely and reciting the few bible verses that have not yet slipped from my cheese-hole brain and wishing that I were anywhere else.

I spent this day alternating between nebulizer treatments and trying to unpack and taking Fancy to the vet. The good news is that the vet believes her wing is only sprained, not broken. If she can make it through the trauma of the injury, she can recover. The vet cleaned the wound from where her blood feathers were ripped out and put her on a painkiller and an antibiotic. I have a week's worth of two syringes that I need to poke down her beak once a day...somehow without stressing her further.

The blood loss, the feather loss, and the lack of appetite have combined to make Fancy 25 grams less than she was during her visit just a couple of weeks ago. I have to keep her weight up and her spirits up and get her to eat and she can get better. Unfortunately, it can take six months or more for her wing to fill out again. During that time, I will have to watch her closely because she will not be able to fly and could hurt herself more should she try to do so or fall off/become startled off the cage.

I asked to go to the cabin because I wanted a haven. Yet I had pet drama and health drama and felt so out-of-place, as if I didn't belong and wouldn't ever. Maybe as someone else, but not as me. Not as the person who just needed a hole to crawl into that happened to have a friend and games and DVDs and children and tasty meals and moss. A hole with no pressure to conform or perform or engage in the draining social contract of pretending that I am not who I am.

I wonder, by leaving, if I have lost more than just a week of vacation.

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