Amos had a good chew down on his bone last night, while resting atop my mid-section. I took it as a good sign. I shall worry until I know there is no long-term damage, but he is eating and drinking and returning to more Amos-like activities.
For example, he was very miffed that I went out twice today. When I walked the woman with whom I had dinner to the door after she brought me home and carried my left-overs inside, Amos became rather hysterical, thinking I was daring to leave him once more. We sat on the steps of the main staircase together as we waved good-bye.
When I was a little girl, whenever we would leave from a visit, the person(s) we visited would stand in the driveway waving until we were out of sight. I miss that. I like to wave good-bye. And, when dropping others off, I like to watch them go inside and then wave goodbye. Of course, I am usually waving to a closed door.
In any case, today, thanks to a Facebook friend, I remembered to pay off the last of two medical bills. I also did not receive the refill needed on one of my medications. And I went to Target, where even the pharmacist had a hard time ringing up the sale of my medications. The latter was actually a bit of a kindness.
Bettina rode in the car with me to drop off my latest batch of donated items (the basement clear out resulted in three boxes--gone are the last of the camping supplies save for the sleeping bag and the matches). I also let go of other things not really needful, such as several free bags and backpacks from conferences, mesh bags for beach trips, thermal lunch totes, etc. And she rode with me as I got lost, as usual, trying to get to the bank to deposit a check from Canada. I find it interesting the process will take about three weeks and has a significant fee. I mean, it is not like the check was coming from Zimbabwe or some other miscroscopic country half a world away. I am fairly certain, living here now, that I can get to Canada before I could get back to where I was born in Texas. Three weeks? Ten dollars to process it?
Anyway, Bettina had to go before my last stop, before the real goal for the day. Target. Prescriptions. Without insurance.
I wore it because while I have known about the chuck of change being handed over to the pharmaceutical companies, I worry, too much, over how quickly such non-insurance visits will drain my meager retirement.
I wore it because I cannot keep wearing my GREEN or red nail polish because doing so made my nails start breaking down. I do not mind stubby nails, for I have never had long and pretty ones, but I do mind nails breaking down and off below my finger tips. SIGH.
Anyway, the younger woman who took my disability application has wanted to spend time together. So, still in Target having heart palpitations over my bill (I did have a $1.50 coupon for my toilet paper AND I remembered to use it), I asked her if she wanted to go to dinner. I have sort of ... bailed ... on other dinner/meal invitations.
I do not feel safe with other people. Not the way that I am. Not having them see what I cannot hide the way I can with a computer screen between I and another. For example, someone local from Facebook wanted to visit and came over. The visit, though nice for having company, was very, very difficult because she started by asking many, many questions about me. She was only trying to get to know me. However, I do not know how to answer questions. And if I have not prepared for such in advance, how I feel about answering questions about how I came here and what is going on with me now, makes the whole exchange even worse. I finally girded my loins enough to tell her that I was uncomfortable with the questions, but doing so filled me with shame and was an inner battle that colored the rest of the visit. She had all those embarrassingly open Facebook posts. And there is certainly too much information here. Just read. Don't ask me to speak it aloud unless I am ready.
We did have a moment of mutual admiration for the awesomeness of the Formula Solid Declaration in the Christian Book of Concord.
SIGH.
Why can I not just be the old me? This new me makes the old me look like a gregarious extrovert!
However, the person I am speaking about tonight is the woman who plowed through my disability application. She knows the things I haven't even told my best friend, the things about my mind and body that make me feel so ashamed I have no words. She knows the report my old boss and my old CEO sent in as documentation of my decline. She knows the very strongly worded reports the two psychiatrists who did the cognitive assessment and the doctor who did the physical assessment submitted. She knows.
Still, I didn't really want to be alone today. For me, it is another beginning ... or ending. I am not sure which. It is another milestone marking the radical change that has and is taking place in my body and my mind. I had to pay that $4,800+ in medications because I have no insurance. And I have no insurance because I cannot work.
The truth is, I like to think ... perhaps to pretend ... that I was still valued added at work. The entire last year I was not. My boss was horrible. Her treatment of me was (and I suppose still is) actionable. I know how she responded to me was wrong and is her issue, but I wonder if some of her rage was due to the fact that she was paying someone a salary who was not doing all that she wanted the employee to do, all that the employee had been doing. I know I worked like a dog. I know I added to the company's bottom line. But in a non-profit you have to work more than a single person's job. The truth was I could no longer do the work of event management or the work of sole writer/editor, two of the chief functions of a communications manager. My work had to be checked. And I could not be counted on to manage tasks because of what I could not remember. I learned tonight some of their report. It stung. Deeply. But I could not disagree.
The reason I did not/do not feel safe with others is how I react and respond. I need for things to be thought out and planned out in advance. For example, I work out how to ask for what I want/need and try to avoid any sort of ... disappointment, so as to avoid any sort of response.
I ordered spinach and artichoke dip, a Myrtle standard choice. I very specifically asked the waitress if it would come with any tomatoes or other garnish on top. She said, "Not at all. We don't do that here." My dish came. It was covered in green onions. I very much dislike green onions. I very much more dislike being the bother of the person who sends her food back. I started shaking and trembling in fear of the server's reaction in asking for another dish. Then shame washed over me for the physical response I was having to my fear and my failure to have avoided the problem though I had tried. Then I became rather frustrated with myself for feeling shame and fear so that my body would react in such a fashion. Well, you can take it from there.
The new dish did not come with a side of sour cream. I like to eat the dip with a bit of sour cream. I was too afraid to ask for it. I sat there staring at my food until my companion asked what was wrong. I told her I wanted sour cream and was too afraid to ask, to bother the already rather, perturbed server. She flagged down someone else to ask for the sour cream. And she said it was okay.
But I do not know her well enough to know if that was a polite response or a real one. At this point, I am not even sure I would feel safe going to a restaurant with my best friend. I wonder what she would think. Would I be just a third child to her?
Then there is this other thing. I am not sure why it is getting worse, other than that it is par for the course with MS, but the trouble talking turned difficulty swallowing turned someone coughing while eating has now turned to drooling [Myrtle types drowning with shame]. I have not wanted to go out, to be around anyone for any length of time lest he/she notice. I don't even know the proper way of dealing with drool that is not from a teething baby.
I want to SCREAM, "I don't want to be a drooling person!" Only ... I am. Now.
Of course, with the sadness and loneliness of Christmas, with the concern for my father, with the grief over the losses I bear, this is the perfect time for my doctor to suddenly decide against my taking Xanax. I found out by her refusal to refill the prescription yesterday. I take just .5mg. I told her I did not want to be someone who took more and more anxiety medication, especially given the problems with Xanax, but it is a medication that, at that dose, gives me a tiny bit of balance with no real side effects. I have just a few pills left, so I took only a half last night. A half is not enough by far. How will I be ... who will I be ... with no support for the anxiety that Dysautonomia brings along with all of its other miseries?
I did ask my companion if we could play a game while we ate. She startled at the request but agreed. Other customers stared at us. But we did play Skipbo. I had to teach it to her and then the rat bastard went and beat me in her first game! The unmitigated gall of her!! There was this moment ... a few minutes ... when the food was all settled and she was on a run and we were exchanging smack talk that, for me, was the most marvelous bit of normalcy.
I was no longer the person who could not speak for or tend to herself, who could not hide her fear and frustration or hold still her body, hold back her tears. I was just a woman in an oversized, but beautifully colored sweater losing rather badly at a game, not because of my brain, but because of the luck of the draw. I with nine of only twelve 10s and she with what she needed to speed through her pile and win.
I do not know if she will want to go out again. I certainly want to remain a hermit. I do not want to have an anxious meltdown with her. I do not want to drool with her. And I do not want to do the other things I have admitted to not a single soul with her.
But I would like a bit more normalcy.
Lord, have mercy. Christ, have mercy. Lord, have mercy.
No comments:
Post a Comment