no day but today

It might be easy to assume that the silence has indicated some sort of change in my journey. It doesn’t. Life goes on…. but it’s still difficult. I’m still sick more than I’m well. I’m still fighting the monsters in my blood, tissue, bone, and brain. I’m still trying to find ways to beat them emotionally, that’s a battle that rages on every single second I exist. The transition continues, it evolves. I’ve changed, I’m changing, those around me have done their best to adapt and support me in my choices. As always, I’m thankful for the support systems that I do have. I’m lucky to have the support of family and chosen family. The biggest change is the difficulty I am having to express these changes in such a public form. It’s been a struggle to work my way through my own mind to understand myself better and those experiences are difficult to formulate into words. It’s becoming more difficult to take visitors into my own mind since I’ve pushed forward and waged deeper into my own labyrinth.

I am in no way unhappy, quite the opposite. I’m looking forward to what is to come in the following months. There is a lot of change, positive change that I will need to work through. I’ll do my best to continue to blog but in some ways vlogging is the more comfortable medium. It has to do with having a feeling of community that I can trust and I feel like for the most part I know who is watching and I know that I can help others in their personal process, just as I was helped through mine. I’ll try to cross post here. I’m safe. We’re safe. It’s going to be ok. I will become the person I’ve always wanted to be.

Writing has been difficult to come by lately. Christmas and the weeks that followed felt like some sort of fast paced emotional roller coaster that everybody else was on but I found myself perpetually in slow motion-left on the platform. Lots of good things, spread here and there and a lot of things that still need processing.

Let’s try a list:
-found out my ‘father’ got married over Christmas. Maybe the 5th time is a charm. Another family to replace me, younger kids this time too.
-found out I can’t change my name, since there’s some fucking law against changing it twice. I think I’m still in shock & am beyond devastated. I have to go get a new Driver’s License and a passport with a name that brings me an intense amount of shame.
-been trying to sort out some long overdue monetary issues
-plans to go on a Cruise in May, thus the need for a passport
-Jak is back in graduate school & I’m itching to be done with my undergrad but that must wait
-Treatment has been on again/off again. It’s difficult when I feel so uncared for by my physician
-I got scabies.
-Our independent guard had their first performance, that’s all going quite well. Competitions start in 2 weeks.
-Got a new point & shoot camera that also takes great guard videos
-Made a list of clothes that need to be purchased or updated
-Plans to have some custom made shirts and perhaps a suit once post-op
-Had lots of conversations about my gender, but not with my therapist
-Talked with Dr. G on the phone, and have a tentative date for top surgery (double incision). May 10th, the day before Sam’s birthday.
-That date is 98 days away. The week after our cruise.
-The port-a-cath has to be removed (a big reason I’m really disappointed with my LLMD, they’re no longer caring for the port) at least a month prior to top surgery. That’s cutting it very close to when the guard season ends.
-Lots of preparations are in place for next fall, but the collaboration with the music arranger has been very frustrating. This is especially difficult since the staff I’m working with has such a clear idea of what we want. I know that there’s no way we could have ever been unclear. I have to admit, this has really made me concerned about being able to pull this show off. I hate that, since I know deep down that it’s a great concept and just perfect for us.
-Slowly starting to give a bit of my heart back to winterguard. But very much keeping it protected from my kids. It can be hard, Jak’s kids (which I used to teach, not my choice to leave) break my heart almost every time I see them. I miss being able to teach at a level where I’m understood and not made to feel too dedicated/crazy/emotional/deep/hard on them. I need a balance. If I’m teaching beginners, I can do it–I just need some advance kids to keep myself from imploding.
-I can throw again. But man, am I sore.
-Going to the orthopedist on Wednesday to see about my back. It’s always had issues, after an almost fatal car accident but is becoming much more difficult to ignore.
-I keep looking around at my life, wondering where my ‘real’ friends went. I’m so tired of having to do the reaching, just to find emptiness again. I don’t even understand what I did wrong. I did everything I knew to do. I’m sure she say things about me that she used to say about other who deserted her. I have never deserted her and I feel hurt that she made it seem like I did. My feelings didn’t seem to matter, I didn’t want to live enough for myself. Or something.
-Slow progress on the night terrors, but triggers are happening almost daily still. Panic attacks are common still. Doing my best.
-The dogs & bunny are doing well.
-Working on tattoo designs as a means of escape and being able to see forward. That’s a big source of comfort lately. I hope to find an artist so that I can really get started soon.

It was a Crazy Christmas. We spent Christmas Eve at my Mom’s making home made pizza’s for dinner and then watching the traditional Polar Express. The dogs got to open a few gifts and had treats and costumes. (I was up all night, Insomnia is what I got for Christmas) Christmas morning we opened presents after frantically getting ready. Went to brunch at my grandparents house with my family. Then we headed an hour up the road to Jakki’s grandparents on her Dad’s side and they opened presents. Then the play was to see her maternal grandmother but we were out of time. So back to her Dad’s house to change, then over to a family friend’s house for pre-dinner cocktails. Then finally back to her Dad’s where we had Christmas fondue late in the evening. By that point the snow was really coming down. We stayed a bit later than planned and finally made it home yesterday evening. Crazy, but fun.

my wife is beautiful.

No longer going to comment on the passage of time between postings, it’s redundant and the time in between is being used for processing all that’s swirling around in my head.

I’ve pulled a lot of boxes out of the back corners of my brain lately. These boxes that were packed hurriedly and pushed deeper into the darkness, over time they’ve accumulated dust & cobwebs from months/years of neglect. The past year has not been easy, hell, the past two years. And I’m just addressing the mental stuff–physically the last 5 years have been pure anguish. I am inclined to think that there’s no way I could have arrived where I am now without that anguish, with out working through the horrors of my own self. I’ve faced off with my own personal demons, monsters, & fears.

I have some where I need to go and I really need those that surround me to give me their full support-no matter where I’m going to end up. I wish I could say that I can do so without permission, but I can’t. As much as I want to do this alone, it effects much more than me and though I’ve learned that at times being selfish is important; I need to respect those who carry me. We’re just going to have to see where this road take me and it’s dark and scary but I need to go the direction that I see most fit for me.

I don’t feel at ease yet with the person I want to become or the labels that I apply to myself and in turn society will apply to me. I wish I was. But I feel at ease about something, some peace knowing that there’s an order to the events that must transpire. And that those events are to be respected and processed as each unveils itself.

I hope no matter what, I’ll still have those that I love behind me because my priority has always and will always be to be true to myself and also authentic with them.

I’ve really sucked at updating lately but if I was honest, I am struggling to make sense of the stuff that’s going on. I in now way am at a point where I could put it all down. There’s a lot of good, a bit of chaos, stress of course, worry, and trepidation. I’m trying to untangle some large vines that have seen clogging up my head for years and it’s not going to happen overnight. I hope I can find peace with it soon though.

Quick notes:

Teaching is awesome and also more chaos and stress than I’ve dealt with in a long time.
Designing things that I actually enjoy. I hope I can continue.
I’d love to be planning on when I’m going to head back to school but I know my body needs a bit more time and treatment.
ah, treatment–it has been impossible since I’ve been sick non-stop from the kids but the amazing thing is that I’m surviving it. Hurting, very much, but I actually have something to contribute now.
I head back to the Lyme Doc in November.
In two weeks I’m seeing an OBGYN surgeon about having some type of surgery to deal with the endometrosis, most likely it will be a full hysterectomy. It’s almost all that I want for Christmas. (if we could just get rid of the chest tumors at the same time, that would be awesome but expensive $5,700 for just the surgery, not counting accommodations or travel to Sunrise, FL.)
The Susan/therapy is sort of at a stand still, I’m not sure that she is the best fit to guide me through the gender stuff. The jury is still out on everything else.
I hope we can make some progress soon, I’m tired of feeling like I’m alone on the island.
I miss my friends, (happy for the ones who have stayed) it hurts me deeply that I’ve lost two for such insignificant reasons. In my wildest dreams, I never would have imagined this. It hurts everyday and I wish I would reach out, but I can’t keep reaching if there’s nothing there to hold on to. Perhaps, it’s my own stubbornness that is causing me the pain–but I feel that I’ve made efforts to reach out and they were not reciprocated. I am thankful to have an old friend back in my life, I hope for good.
We’re looking at houses again and I’m just not going to get my hopes up but I hope change is on the horizon for us.

that’s all for now. I hope the distance is shorter between this and what is next.

It’s the night before my 24th birthday and I can’t believe I just wrote that. I always get caught up in the negative things that I feel around my birthday, I realize most of the things I find so hurtful are things that I cannot control. But I think my mind has this inflated sense of control, something about being a stage manager all those years. I get caught up in the fact that I haven’t finished school, that I’m not working on my Masters or PhD. That kills me, at this point I’ll be lucky to finish before I’m 30. I have students that have graduated now. Sure, I’m teaching again now, designing even but for me that’s not enough. The same part of my brain that has caused me to push myself is the part of my brain that’s now hurting me the most. I’m trying to figure these things out and I’ve sure had the time to look at my brain in ways that others haven’t but that’s something that in life it’s hard to quantify and very hard to explain to others.

On the last day of 23, I slept until 6pm, since I was tired from a long drive and rehearsal day Tuesday. I drove to the greenway and walked my dogs. Afterwords we picked up some birthday cake yogurt and brought it home. I could leave out the part about coming home and running a bath and jumping into bed but I won’t, it’s a part of my narrative. I realize that I feel more adult than I have in a long time. It’s a thing with me, but I’m legit now. More legit than I’ve been in years and maybe I should just celebrate that.

i spend a lot of my time occupied with worry. yes, i get that it’s truly useless and wasteful at all times. thank you jewel. it just feels like the old ball and chain, i can never get too far before the chain is pulled taut and i’m at the end grasping my neck and gasping for air. it sucks. for once i’d like to not worry about the results of my latest x-ray or blood tests. i’d like to not be reminded daily that my vision is failing. i’d like to not think this is the last time i’ll see so and so.

i guess in a lot of ways it serves as a way to keep me honest and to keep my feet planted in the moment but the worry actually takes me out of the moment. i spend a lot of time thinking about how much space i have left in my life. it’s like if i don’t keep looking at the ground ahead of me then one day, if i wasn’t looking i’d fall off the edge of a cliff and it’ll all be over. my problem is that the amount of looking that i’m doing isn’t just that which you should do to keep you safe and alive but the kind of looking that is more like a rabid squirrel. i miss a lot of important stuff along the way too. for just a little while, i’d like to be able to live life and not think of or worry about my impending doom. i don’t feel like it’s too much to ask.

struggling a lot in my mind these days. body is hanging in there, dosing and treatment continue. busy with band camp planning and various work.

back on treatment and still alive. not as barely as i was before, which is nice. tired from the visit to DC and of course designing+meetings. i sound like a real human, but please understand i’m not. going on tuesday to have the surgeon look at my port and we’ll see how that goes–hope i can skip out on surgery seeing we’re only a month away from camps. an update will come soon, i hope.

Here’s what I wrote on the way home from the Wizard last week:
The visit went as I had anticipated: I am still way too toxic, not detoxing well at all. We are still treading water essentially, trying to calm my neuro symptoms and immune response enough that we can actually treat more agressively. My port is still in jeapordy and we got confirmation that there is something wrong and of course Lyme is to blame. We’ll have to visit the surgeon again and cannot access it-we’re going on 8 weeks without fluid/vitamin supplementation and I’m realizing just how dependent I am. The reason we got the port and removed the PICC remains. We are going to continue on this protocol and add some seizure drugs as well as supplements to hopefully gain some ground and in 6 weeks if improved we will hit harder and add in the Babesia treatment. (pure fucking misery) a necessary evil, sadly. My carnatine, Vitiman D, Potassium, and Immune Response Marker(was off the charts-high) were quite low-we made adjustments based on that. I am still
malnourished according to my blood work, which doesn’t shock me. Sticking with the Zofran, Marinol, and Scop patches, try to avoid gluten and eat when I can. Even though I’ve been more active since I’ve seen him last I’m still putting on weight. I hate this aspect of Lyme, it’s fluid I’m retaining in addition to a lot of atrophied muscle. Confirmed that the shoulder issues are Lyme at work, that I’m likely to need more surgeries down the line since the scar tissue will reappear and need to be scoped out again. Stressful that we’re
paying out of pocket and my body won’t cooperate, lot of guilt about not being able to tolerate more. I try so hard to just grin and bear it but usually when I do that I end up seizing out and waking up with no clue where I am. That costs us more time in the long run. Frustrated that my body isn’t just failing me but everybody that depends on me. Really worried about teaching camps, last time I did I found myself at the clinic on the weekend and at UNC for urgent bloodwork. that’s not an option this year.