I rarely do any writing these days. I am very busy teaching and performing and I only have one day off a week if I am lucky. When that day arrives, like today, I am exhausted: physically, emotionally and on bad days, spiritually as well.
In many ways, I am living my passion and my dreams. My only real complaint: my day job and the need to make a good living to take care of my family keeps me working a job I care little about. I find myself at work daydreaming about circus life, distracted from my actual work by looking at aerial pictures and videos, updating my Firebird Moving Arts page on facebook, anything to pretend that my whole life is moving arts. And it is. At least it is the moment I leave my day job. Too bad my day job takes most of my time... These days money is always a big thought in my mind: how to pay for the life my husband and I want for us and his child (soon to be with us, I hope). I am not complaining, merely noticing.
I still am grateful every day that my health remains so stable, despite the MS. Honestly, this disease motivates me. Why wait until tomorrow to do something you want to do today? I am conscious of the unpredictability of MS. One day soaring, the next potentially unable to walk. I am determined to fly for as long as I can, to keep growing stronger, to fulfill all of my creative urges. I find myself unwilling to even contemplate dumbing down my art. It would be easier to choreograph an aerial act and perform the same act for a while but I am forever driven to create new things. I don't want to chose easy. I want interesting!
Embrace the sunshine when the sun shines. I am still not ready to write something of or about Cara but I feel a pull to write, to just let words spill out on the page and see where they lead. Every year in my yoga classes right after new year's I talk about letting go of the old to make room for the new. Now I ask myself, "What layers must I shed? What do I seek in the year ahead?" I think until June that there is little I want to change in my external realities but much I seek to change internally. I have only one "resolution" but it is massive, not a resolution I expect to excel at or to perfect anytime soon... I continue to seek patience for all things. I know that there is not much I can change about necessities like going to work, but I can change my reactions. Busy almost automatically indicates stress to me. When I tackle a giant list of things to do, constant driving and responsibilities to others, my modus operandi is to speed up and create crisis out of next to nothing. Needless to say, not good for my physical or mental health. I often view all my responsibilities as burdens rather than celebrating the fact that after almost six years living with MS, I can still support myself and my little family. Sometimes I feel like I would rather sleep than go teach yoga or aerial when instead I might be better served enjoying the fact that I still can do these things. I cannot allow my passions to become my burdens. People are always surprised when I call my diagnoses one of the best things to ever happen to me but it is still true as long as I remember what it has taught me. Living with MS has taught me to treasure the moment and to celebrate every day I get up with my physical and mental abilities intact. Yeah, it has forced me to slow down and to sometimes do less, but that is a good thing, not a drawback. When I am inclined to push to hard, I remember it is better to rest and to save my strength for another day. If I can just remember this all the time, than I can allow myself to go more slowly, to do less, to stress less and to take optimal care of my mind, body and spirit.
My close friend and acro yoga partner died in a car crash on Friday. Since then I have been thinking to write something but then I find either I can't, or I am not willing to put memories to the page because then they have a way of becoming my truth and I am still sorting out my truth.
When each of my grandmothers passed away I was almost instantly able to write something that captured the things I wanted to capture. Not so now... I think I feel different because my friend was so young. I just saw her, just talked, just practice acro and she was healthy and happy... My grandmothers each lived full, long lives. Death brought an end to their suffering, a sort of peace for each of them and my family. There is no peace in the death of my friend.
Why is it that when someone dies, we want to imagine that there is some "good" that may come about as a result of their death or some explainable reason for it? What if there is no good that come of it? What if there is no "reason?" Is this the sort of thing that makes those with faith in God have doubts. If I actually believed in God, would I be questioning my God? I cannot find reason in these events. These events are not reasonable in any way.
I feel sick, spiritually and mentally. I am trying not to judge my own reactions but it is hard not to when I see others in a flurry of activity caring for her pets, planning memorials and raising money. I feel paralyzed and powerless. I can't even put words on paper that feel adequate, let alone plan anything. I find myself shying away from memorials a bit. I think about my friend and how she would have looked at all the fb comments and been like, "Really? these people didn't even know me..."
We all grieve and cope however we grieve and cope but it is almost like folks are attracted to tragedy like flies to a kill. I have no stomach for it right now. I don't want to go to a memorial filled with spectators who met my friend in passing or only via facebook.
As I sat worrying the other night about what to do with my Copaxone situation, it occured to me that if the choice had involved my anti-depressant, there would have been no choice. I would have just bought my med with credit and a prayer. It also occurred to me that my physical health is as important to me as my mental health. I would spend every cent in my arsenal in order to keep doing aerial dance. Once I had this realization, my choice was clear, start stripping (JK). Actually, I knew that I would contact the drug company to get help with my copay. I also decided that even if I could not get help to pay for my med, it is a more important expense than everything except food and rent. There really was no decision to be made: the choice was clear, if there is any chance that Copaxone is the reason I can do the things I do, I want to stay on the drug. I want to continue to fly!
Fellow MSers, I really need some good advice right now from some people like myself who understand... I went to get my Copaxone today on my health plan from my new school district. When I went to the counter to pick it up the woman told me it would be $250.00. I thought I had heard her wrong but I had not. I decided not to buy my Copaxone today so I could go home to troubleshoot. I signed up for the same Kaiser plan I had in my old district where I only had to pay $10.00 copay each time. Apparently even the same plan is not the same in each district and does not cover the same stuff. I came home thinking maybe I signed up for the wrong plan but then I checked and I had signed up for the best one offered so even if I changed my Kaiser plan, my med will still cost me $250.00 a month. The problem is, at the moment I just don't have the money. So here is where I need help... Do I just toss the dice and quit the med? I have no way of even knowing if it helps me. It does not treat symptoms and it does not cure MS. I am feeling fine and I have not had a relapse in over a year (knock on wood). A huge part of me wants to take 6 months off and see what happens. Please send advise but please be kind and don't call me an idiot or anything (sometimes I notice folks can be militant about meds so please have compassion).
Thanks so much,
Today is one of those days where it may be that my ambitions exceed my actual energy. So far I have bathed, folded laundry, eaten breakfast and played on youtube and facebook. It is 12pm and I already feel ready to go back to bed, even after sleeping 13 hours. It was a demanding first week back to work. I am not used to the early mornings and long days. I have been ridiculously exhausted since Friday. I brought home work today but hardly touched it. Instead I subbed yesterday for contortion and aerial dance. I thought just teaching wouldn't really make me too tired but then I came home and slept 3 hours. 3 hours after that, I went back to bed and slept from 7:30pm until 8:40am this morning. I had plans to do acro yoga at 11am today but that was postponed until 1:00. Now I kind of wish I had not committed. I also committed to aerial at 5. In the meantime, my bed is whispering sweet nothings to me.
I know to listen to my body and to avoid being stubborn but I really want one day a week to be not about work. I want my fun day to be full of acro and aerial. I hate the way that work always gets in the way of playtime LOL. I am going to play still but I am going to just take it easy and see how I feel. So much of disease management is about finding balance.
Summer vacation has been great. Really great. Great to the point I find myself too busy doing other things I love to even bother blogging. Not that I don't love blogging... I do but there is always some chance to go do aerial or to play at acrobatics in the park, or to go out with friends and family. Tomorrow I officially start on my new job so I thought I would write a quick life update before I get caught up in tons of work stuff.
This year I will be teaching ELD (English Language Development) (ESL) to elementary school kids in Denver K-5. I think I am going to like it but it will be a lot of work.
In other news-- I am engaged to a Dominican man named Jose. His fiance Visa was just approved so soon he will be living with me in Denver. We plan to get married soon too. We are super-happy and excited.
My health is good (knock on wood). I feel good both physically and emotionally and I thanks to aerial dance, I am getting stronger all the time. I can even do pull ups now ( a feat for an adult female). I am feeling toned, thin and buff. I am absolutely addicted to aerial. When work starts I hope to maintain a good balance of work and play. Here is a link to my latest aerial video.