2 months after and riding my bike!
So much emotion of late. Emotions about recent hardships, emotions about childhood experiences. I realize now it's what PTSD describes, the triggering of extreme emotions by apparently mundane events. Like picking up the crap behind the freezer after months of nobody doing it. Finally I'm strong enough to do it myself, and there's a box from pico salax treatments to get me ready for the colonoscopy. I was at my most miserable then. Sick nearly to death and hanging on by the meniscus on the coconut water. I saw it and started weeping about what I went through. Or I hear about some school thing or childhood thing and am brought back to an event from childhood. Today I was remembering the principal who accused me of crocodile tears. There I was, helpless in a brain storm, weeping, stupid, terrified, overwhelmed, and this guy would repeatedly inform me that I was psychotic and unable to perceive my own motivations. From my POV, I most assuredly could not stop and start the tears "like a faucet" nor did I understand why my emotions were so overpowering. But this person, and others since, was telling me I was completely in control and using the situation to work my angles. Setting me up to doubt my own experiences and intentions! I'm still angry about that. There I was, autistic, ADHD, with brain damage, and he's accusing me of crazy. No wonder I finally took on the lable and used it to my advantage, it was the one people kept thrusting on me.n The brain damage was a wagon wheel hub that landed on my head and knocked out the crying toggle switch, took from me the very control that authority person accused me of using. That's literally the only damage it did, but it did so permanently. I can only control my crying by controlling my level of stress, which for an autistic with ADHD is about reaching a zen level of calm, not merely "keeping it together."
And now I have a new batch of triggers I haven't even met yet, anything, pretty much, that references the year of 2016.
I learned through our accountant that I lost 2014 and 2015 too, pretty much, because apparently we went that long without filing. Goddamn. That's one nasty pile of trash built up while I was out of commission. I take it as proof that if I don't do things, things won't get done, I can't rely on, count on, or turn to anyone else.
Important things like taxes, housekeeping, cooking, etc. didn't get done. I still paid the utility bills, so that kept going. I still cleaned the bathroom, even at my lowest, because I spent a lot of time in there being far too intimate with the toilet, and making too much mess myself. So I found the juice to clean the bathroom. Bills I paid online, so they got done too. If I didn't do it, or direct it's doing like a job supervisor, things just didn't get done.
I don't know how many times people have said "relax, if it's important, someone will do it." Yeah, that someone is ME.
I'm still worried about it because a lot of what I need to do exceeds my hernia prevention limits. Tomorrow night there's a class followed by perosnal consult appointments for physiotherapy advice. I hope it works for me.
I met with the plastic surgeon who worked on my VRAM flap peritoneal rebuild. She said I was fully healed, could ride my bike, no restrictions, except maybe not one of those narrow bike seats or similar pressure situations. So I'm able to run now, and ride a bike, and take the stairs two at a time. I was avoiding impact motions to go easy on my new pelvic floor. I've been riding my bike nearly daily since I got permission. I have a visitor for lunch today but tomorrow will see me riding to the physio class. Getting to the university will challenge me a lot, it's double the distance to downtown and all uphill, but I'll give myself extra time and allow slower movement or even stopping. If I give myself a lot of extra time I can play all the pokestops along the way. Cycling and pokemon go actually go together really well if you don't mind stopping a lot.
I've gotten a fitbit, it's making a huge difference in my fitness. I'm using it to count calories (the app allows food input) and it shows me calories burned, and it also encourages more movement by giving me a sense of pride for any movement I do. it counts up all my movement, including going to the bathroom or walking to the back yard, everything. So far my stats show me going hard every third day and gently the day after and mid way on day two. So that makes sense and encourages healing and strength building. My appetite seems pretty well adjusted to my energy output too, but I'm still being very careful about not getting heavier. I would like a body fat monitor, mind you, because if I"m building muscle, I should gain some weight, but if I put on fat, it'll go only and directly to my stomach now I'm no longer outputting hormones from my ovaries, which are gone.
Yeah, that was a trigger. I read the pathology report on my lost tissue. That got me crying in a way the surgery itself couldn't. I've really been missing it. Missing my anus. Yep. I never knew how much of a presence that organ has on a person. You're never far from awareness of it. Like a "right hand man" it can get your attention with very little effort, and command your attention. You get used to it. The constant awareness of where it's parked when you sit, what it's feeling and doing, and how it centers you physically. It's a huge part of your body awareness! Now there's a missing spot, some tissue with no nerve connection to the mind. The skin at least lost it's nerve connections and so there's a gap, and the ab muscles that make up my new pelvic floor and fill in the empty spots, they don't even come close to the same level of awareness that was used by my anus, rectum, and the muscles on them. Also of course, learning to live with the colostomy doesn't help my sense of loss. It's pretty awful.
We discovered that people are building replacements for the expensive ostomy supplies. You can find things on thingiverse for your 3d printer. I put up a plastic ring for supporting the bag, and discovered people had created two whole appliance solutions.
Neither one is suitable for my body, but they inspire ideas and I'm thinking I could really cut down on my spending with a design of my own imagining building on the ideas this other guy had.
Just now, I was imagining cleaning the thing and how PLA 3d printed items are so porous. May take a little more thinking. Hmmm, already got a little more thinking done.
My brain is back. I had no idea how stupid I'd gotten till I got to where I couldn't even knit a row of plain stitches without getting confused. Now I'm engineering medical appliances in my head. :-) Nice to be back.
I'm cooking too. I filled the freezer with ready-to-eat stuff. Curries, soups, broth cubes, smoked and roasted meat portions, side dishes, sauces. Just by cooking triple what we need and putting the rest up. Or more than triple. Like the curried chicken. I used a club pack of 20 deboned chicken thighs and two cans of curry sauce, but added fresh onions and peppers and tomatoes and enough sriracha to give it a little zing. We ate a meal of it, put one in the fridge as leftovers, and put up four more meals in the freezer with 2 portions per meal. With rice.
I'm also sitting up at my desk again. If I get tired enough I can set up a table by the couch but I'm no longer stationed there. My legs get SO stiff sitting here like this compared to lounging like a roman on my hip on the soft couch.
They're putting a titanium valve in my arm connected to a small tube that runs down my vein to my heart. The thing has a rubber cap on it and is set just under the skin. Then five days later they'll use it for my first IV chemo treatment. They poke a fine needle through the skin and rubber cap, and it allows them to send the medicine right to the heart for proper delivery through the body. Four months of chemo ahead of me, starting the second week of november. I keep wondering, will I notice it this time? Probably. I feel so energized. But I did my research on the medicine and what it does, and I am confident the 3x/day calcium and gingko biloba will help. The oxaliplatin leaches calcium and damages the membrane on nerves, causing the most destructive side effects. So extra calcium, and the gingko biloba has been proven to protect the membrane in question, so I'm taking it for that.
And now I have a new batch of triggers I haven't even met yet, anything, pretty much, that references the year of 2016.
I learned through our accountant that I lost 2014 and 2015 too, pretty much, because apparently we went that long without filing. Goddamn. That's one nasty pile of trash built up while I was out of commission. I take it as proof that if I don't do things, things won't get done, I can't rely on, count on, or turn to anyone else.
Important things like taxes, housekeeping, cooking, etc. didn't get done. I still paid the utility bills, so that kept going. I still cleaned the bathroom, even at my lowest, because I spent a lot of time in there being far too intimate with the toilet, and making too much mess myself. So I found the juice to clean the bathroom. Bills I paid online, so they got done too. If I didn't do it, or direct it's doing like a job supervisor, things just didn't get done.
I don't know how many times people have said "relax, if it's important, someone will do it." Yeah, that someone is ME.
I'm still worried about it because a lot of what I need to do exceeds my hernia prevention limits. Tomorrow night there's a class followed by perosnal consult appointments for physiotherapy advice. I hope it works for me.
I met with the plastic surgeon who worked on my VRAM flap peritoneal rebuild. She said I was fully healed, could ride my bike, no restrictions, except maybe not one of those narrow bike seats or similar pressure situations. So I'm able to run now, and ride a bike, and take the stairs two at a time. I was avoiding impact motions to go easy on my new pelvic floor. I've been riding my bike nearly daily since I got permission. I have a visitor for lunch today but tomorrow will see me riding to the physio class. Getting to the university will challenge me a lot, it's double the distance to downtown and all uphill, but I'll give myself extra time and allow slower movement or even stopping. If I give myself a lot of extra time I can play all the pokestops along the way. Cycling and pokemon go actually go together really well if you don't mind stopping a lot.
I've gotten a fitbit, it's making a huge difference in my fitness. I'm using it to count calories (the app allows food input) and it shows me calories burned, and it also encourages more movement by giving me a sense of pride for any movement I do. it counts up all my movement, including going to the bathroom or walking to the back yard, everything. So far my stats show me going hard every third day and gently the day after and mid way on day two. So that makes sense and encourages healing and strength building. My appetite seems pretty well adjusted to my energy output too, but I'm still being very careful about not getting heavier. I would like a body fat monitor, mind you, because if I"m building muscle, I should gain some weight, but if I put on fat, it'll go only and directly to my stomach now I'm no longer outputting hormones from my ovaries, which are gone.
Yeah, that was a trigger. I read the pathology report on my lost tissue. That got me crying in a way the surgery itself couldn't. I've really been missing it. Missing my anus. Yep. I never knew how much of a presence that organ has on a person. You're never far from awareness of it. Like a "right hand man" it can get your attention with very little effort, and command your attention. You get used to it. The constant awareness of where it's parked when you sit, what it's feeling and doing, and how it centers you physically. It's a huge part of your body awareness! Now there's a missing spot, some tissue with no nerve connection to the mind. The skin at least lost it's nerve connections and so there's a gap, and the ab muscles that make up my new pelvic floor and fill in the empty spots, they don't even come close to the same level of awareness that was used by my anus, rectum, and the muscles on them. Also of course, learning to live with the colostomy doesn't help my sense of loss. It's pretty awful.
We discovered that people are building replacements for the expensive ostomy supplies. You can find things on thingiverse for your 3d printer. I put up a plastic ring for supporting the bag, and discovered people had created two whole appliance solutions.
Neither one is suitable for my body, but they inspire ideas and I'm thinking I could really cut down on my spending with a design of my own imagining building on the ideas this other guy had.
Just now, I was imagining cleaning the thing and how PLA 3d printed items are so porous. May take a little more thinking. Hmmm, already got a little more thinking done.
My brain is back. I had no idea how stupid I'd gotten till I got to where I couldn't even knit a row of plain stitches without getting confused. Now I'm engineering medical appliances in my head. :-) Nice to be back.
I'm cooking too. I filled the freezer with ready-to-eat stuff. Curries, soups, broth cubes, smoked and roasted meat portions, side dishes, sauces. Just by cooking triple what we need and putting the rest up. Or more than triple. Like the curried chicken. I used a club pack of 20 deboned chicken thighs and two cans of curry sauce, but added fresh onions and peppers and tomatoes and enough sriracha to give it a little zing. We ate a meal of it, put one in the fridge as leftovers, and put up four more meals in the freezer with 2 portions per meal. With rice.
I'm also sitting up at my desk again. If I get tired enough I can set up a table by the couch but I'm no longer stationed there. My legs get SO stiff sitting here like this compared to lounging like a roman on my hip on the soft couch.
They're putting a titanium valve in my arm connected to a small tube that runs down my vein to my heart. The thing has a rubber cap on it and is set just under the skin. Then five days later they'll use it for my first IV chemo treatment. They poke a fine needle through the skin and rubber cap, and it allows them to send the medicine right to the heart for proper delivery through the body. Four months of chemo ahead of me, starting the second week of november. I keep wondering, will I notice it this time? Probably. I feel so energized. But I did my research on the medicine and what it does, and I am confident the 3x/day calcium and gingko biloba will help. The oxaliplatin leaches calcium and damages the membrane on nerves, causing the most destructive side effects. So extra calcium, and the gingko biloba has been proven to protect the membrane in question, so I'm taking it for that.