I ask my husband that because I am campaigning hardcore to drive the bus to hell.
Because my husband is shaking.
Because he has young onset Parksinsonism.
We have been through a ton of specialists, many thousands of dollars in testing and now we know why he can hardly walk and why his left arm has a constant tremor. He had a DaTscan done last week where they use a radiopharmaceutical tracer to see dopamine activity in your basal ganglia. He hardly has any activity, so there we go. A diagnosis just like that. Finally. And its awful.
He is 42 years old. And he has Parkinson's Disease.
And surprisingly, he has even lived what Republican senators cannot even argue is a good life.. He's a lifelong vegetarian. Never smoked. Literally took one sip of beer on his 21st birthday, though he may have had a few teaspoons of Lutheran communion wine over the years. Exercises. Works hard at his job and has been steadily employed since he was 15. Makes charitable donations and even became a foster parent.
Still got a fucking degenerative brain disease.
A day will come when the muscles in his face will no longer allow him to smile at me, and however hard anything has been in our life so far, that day will be the hardest.
Tuesday, July 18, 2017
Sunday, January 3, 2016
The Year in Review
I feel like finishing 2015 should earn me some sort of prize. It was hard, damn hard. And I kept on rising to meet all of my responsibilities as hard as I could. Some other shit happened, but all I really take away from 2015 is that we got through it.
The sadness is still there. But there is also some hope. We have gotten the ball rolling on Special Needs Adoption through the foster system. I hope that this is the year we become parents.
And I want to do more yoga and shit, too.
The sadness is still there. But there is also some hope. We have gotten the ball rolling on Special Needs Adoption through the foster system. I hope that this is the year we become parents.
And I want to do more yoga and shit, too.
Saturday, August 8, 2015
Hey girl, you should totally get that yarn ball tattoo...
So I did. Finally.
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| taking a picture of my wrist was awkward |
My tattoo artist was a former marine who also knits, he had a girlfriend who crocheted, so he learned to knit. He said it was very relaxing, I don't think you get much more stressed out than being a freakin' marine, so it just speaks to the power of knitting.
"Breathe" isn't very original as a tattoo, but it really resonates with me. One of the biggest take aways from my OCD and panic disorder therapy has been the breathing. It's not really a secret, just breathing to help stop the vasovagal freakout that makes me dizzy, clammy, stomach crampy, and shaky.
Breathing is also part of my yoga practice, which is still very beginner, but the breath is so important.
And then there is the advice they give you on planes in case of disaster: put your own oxygen mask on first. And a large part of me getting on the path to wellness was the equivalent of putting on my mask. Putting myself first. Taking care of me while other things were a disaster. Taking care of me because I am worth it. Because I am not a failure. Because it is important.
The sparrow is for remembrance.
And I had the whole thing done to face me. These are reminders for me.
Saturday, August 1, 2015
Loss
This seems like more of a post for here, my mental health and OCD figure into it all.
Last month the stars, the hormones, the fertility drugs, and my ovaries all aligned and we found out we were finally pregnant. We were going on our eighteenth month of trying with timed intercourse, dipping sticks in pee, checking, counting, and the utter hell and heartbreak of infertility. If you've ever seen a movie or tv thing about a woman trying to get pregnant, it's much closer to the truth than I ever imagined. We lose our goddamn minds with it.
I have been stranded on the toilet sobbing too hard to even stand up and pull my pants up at least once a month during this time. Or waylaid by a woman who walks through the waiting room with a newborn. Utterly shattered by the toddler in the grocery cart near me who is playing peek-a-boo. I have have been so sure that it was our month so many times. It never was.
And then, there it was, two lines on a test. Two lines on a dozen tests. Five digital tests saying it was true. Then a quantitative HCG blood test. And then another. And yet another. And yep, I was knocked up for real. Everything was doubling in 48-ish hours. We set up my dating scan for mid-July. We spent that weekend being giddy and cuddling and randomly saying things like "Oh my god, we made a baby. Well, right now it's a blastocyst. We made a blastocyst!" It was the first Father's Day that I acknowledged since 1984.
It was us and the poppyseed.
The next week we just let it soak in. I can't say I felt sick or tired or anything yet. Things smelled different all of a sudden. Mostly I felt gassy. I wasn't but I just felt bloated. And then I felt some little stretchy things, it didn't feel like anything else. Just like little stretchy kind of sparky twinges. And warmth. I was HOT. my body temperature was up over 99 degrees for three weeks.
And we started to accept that this was really happening and we were nearly 6 weeks along and getting closer to that ultrasound every day. That ultrasound where we would see a heartbeat and could relax.
And then it stopped happening. I started bleeding. The doctor's office told me to hang in there and just take it easy and remember to breathe. The next day it seemed to stop for a while. And then it was back and painful. It was obviously not going to be OK and the repro med center wanted me to come in that afternoon.
The ultrasound showed no gestational sac in my uterus. The remnants of one were near my left ovary, it was reabsorbing, there was no more evidence of the poppyseed, which should have been a sesame seed by then. I know it's the best possible outcome for an ectopic, my body was clearing it out. It was so efficient that my right ovary was already working on the new follicles.
I wasn't pregnant anymore. I wanted to make everyone in the room just stop and let me take it in. I kept thinking they can't tell me this, we want this so much, we have done absolutely everything possible to get here. How can they break my heart before I have even been allowed to put my underpants back on? While my doctor was telling me to go to the main hospital lab I was just hoping I wasn't bleeding all over the floor. Because the cramping was getting worse by the moment.
We left and I had to sit down in the lobby. I couldn't breathe. It all hit me so hard that it just took my breath away. Emergency blood work at the main lab confirmed that my HCG had dropped by a huge amount, and two days later it was down in the definitely not pregnant range. And for the next few days I would randomly fall apart crying while my body was working on tidying up, it was painful and upsetting. I really hadn't thought of miscarriage as a process more than an event. It took several days to be complete.
And then I was OK and carrying on. We got the go-ahead to try again as soon as we wanted. And through whatever fuckery that governs my endocrine system, I was gearing up to pop out an egg on my own so, we once again gave it our best shot. And I did ovulate and even early. So we waited.
And we didn't catch it.
And it was somehow harder to accept this failure. I don't know why, it just made it all so much more real.
So it's a new cycle, and this time medicated. And at seven days into it, it could be the fertility drugs talking, but it hurts. I feel like a raw nerve. I cry. I cry so hard I can't breathe. When I'm not crying my throat hurts from swallowing the tears. My ovaries are feeling warm and heavy from the pills. I am trying to feel positive. I am trying to accept it all.
But I just want to scream that it's not fair. That this hurts too much. That I can't do this again. Except that we aren't ready to give up yet, we can't not do this.
And so we move ahead and I am focusing on my bans*, I am doing a leaner version of fertility charting, I am not checking and double checking or triple checking every symptom. I'm still going out. I am letting people in. I am feeling my emotions and handling them in appropriate ways.
It's the hardest thing I have ever had to do. June 29th was absolutely the shittiest day of my life so far.
I think that February 24th will be the second shittiest. It's the day after my birthday.
It would have been my due date.
* my bans are my banned behaviors, things I am not supposed to do. It's part of cognitive behavioral therapy. Negative self talk and OCD information seeking are my superpowers.
Last month the stars, the hormones, the fertility drugs, and my ovaries all aligned and we found out we were finally pregnant. We were going on our eighteenth month of trying with timed intercourse, dipping sticks in pee, checking, counting, and the utter hell and heartbreak of infertility. If you've ever seen a movie or tv thing about a woman trying to get pregnant, it's much closer to the truth than I ever imagined. We lose our goddamn minds with it.
I have been stranded on the toilet sobbing too hard to even stand up and pull my pants up at least once a month during this time. Or waylaid by a woman who walks through the waiting room with a newborn. Utterly shattered by the toddler in the grocery cart near me who is playing peek-a-boo. I have have been so sure that it was our month so many times. It never was.
And then, there it was, two lines on a test. Two lines on a dozen tests. Five digital tests saying it was true. Then a quantitative HCG blood test. And then another. And yet another. And yep, I was knocked up for real. Everything was doubling in 48-ish hours. We set up my dating scan for mid-July. We spent that weekend being giddy and cuddling and randomly saying things like "Oh my god, we made a baby. Well, right now it's a blastocyst. We made a blastocyst!" It was the first Father's Day that I acknowledged since 1984.
It was us and the poppyseed.
The next week we just let it soak in. I can't say I felt sick or tired or anything yet. Things smelled different all of a sudden. Mostly I felt gassy. I wasn't but I just felt bloated. And then I felt some little stretchy things, it didn't feel like anything else. Just like little stretchy kind of sparky twinges. And warmth. I was HOT. my body temperature was up over 99 degrees for three weeks.
And we started to accept that this was really happening and we were nearly 6 weeks along and getting closer to that ultrasound every day. That ultrasound where we would see a heartbeat and could relax.
And then it stopped happening. I started bleeding. The doctor's office told me to hang in there and just take it easy and remember to breathe. The next day it seemed to stop for a while. And then it was back and painful. It was obviously not going to be OK and the repro med center wanted me to come in that afternoon.
The ultrasound showed no gestational sac in my uterus. The remnants of one were near my left ovary, it was reabsorbing, there was no more evidence of the poppyseed, which should have been a sesame seed by then. I know it's the best possible outcome for an ectopic, my body was clearing it out. It was so efficient that my right ovary was already working on the new follicles.
I wasn't pregnant anymore. I wanted to make everyone in the room just stop and let me take it in. I kept thinking they can't tell me this, we want this so much, we have done absolutely everything possible to get here. How can they break my heart before I have even been allowed to put my underpants back on? While my doctor was telling me to go to the main hospital lab I was just hoping I wasn't bleeding all over the floor. Because the cramping was getting worse by the moment.
We left and I had to sit down in the lobby. I couldn't breathe. It all hit me so hard that it just took my breath away. Emergency blood work at the main lab confirmed that my HCG had dropped by a huge amount, and two days later it was down in the definitely not pregnant range. And for the next few days I would randomly fall apart crying while my body was working on tidying up, it was painful and upsetting. I really hadn't thought of miscarriage as a process more than an event. It took several days to be complete.
And then I was OK and carrying on. We got the go-ahead to try again as soon as we wanted. And through whatever fuckery that governs my endocrine system, I was gearing up to pop out an egg on my own so, we once again gave it our best shot. And I did ovulate and even early. So we waited.
And we didn't catch it.
And it was somehow harder to accept this failure. I don't know why, it just made it all so much more real.
So it's a new cycle, and this time medicated. And at seven days into it, it could be the fertility drugs talking, but it hurts. I feel like a raw nerve. I cry. I cry so hard I can't breathe. When I'm not crying my throat hurts from swallowing the tears. My ovaries are feeling warm and heavy from the pills. I am trying to feel positive. I am trying to accept it all.
But I just want to scream that it's not fair. That this hurts too much. That I can't do this again. Except that we aren't ready to give up yet, we can't not do this.
And so we move ahead and I am focusing on my bans*, I am doing a leaner version of fertility charting, I am not checking and double checking or triple checking every symptom. I'm still going out. I am letting people in. I am feeling my emotions and handling them in appropriate ways.
It's the hardest thing I have ever had to do. June 29th was absolutely the shittiest day of my life so far.
I think that February 24th will be the second shittiest. It's the day after my birthday.
It would have been my due date.
* my bans are my banned behaviors, things I am not supposed to do. It's part of cognitive behavioral therapy. Negative self talk and OCD information seeking are my superpowers.
Saturday, May 23, 2015
No worries at all?
I have been working on my yoga practice to help manage anxiety and all sorts of things. And as part of that I have been working on meditation as well. I have used some guided meditations and recently bought a package from Circle and Bloom that specifically focuses on PCOS and fertility and cycles.
I was listening to today's segment and after some typical relaxation routines, she says to focus on when I was "ten years old and had no worries at all. "
And that kind of stopped me cold and all day long it's been running through my head. Because my life was being turned upside down and shaken when I was ten years old. My mom packed us up and moved us out, they were going to get a divorce, my dad just...unraveled, there were horrible, terrible fights where I was basically sobbing hysterically and begging them to stop yelling. They ignored me until my mother would tell my dad to look at me and see if this is what he wanted. To do this to his daughter. Again. Neither one was willing to stop fighting until I could be the weapon to use against the other: "Look what you're doing to Annie!"
And then he was dead and I blamed myself for it, we moved back to our house and I felt like I had to take care of everyone. Someone had to take care of us.
I can't actually think of any age where I had no worries at all. My mother once tod me a story about how I was such a good baby. On Saturday mornings she did the big housecleaning for the week, and to keep me busy, he'd give me the old TV guide in my crib. And I would rip every single page into strips while she worked. My OCD therapist was quite intrigued at that.
One of my earliest memories is hiding with my mother and infant sister in the way back of this storage closet because we were hiding from my father. He was drunk and spoiling for a fight and we had to hide until he passed out. I would have been two.
When I was five, he said goodbye to us so he could go get help. He did inpatient alcohol detox at Hazelden. I think he was gone for a few weeks. I don't know if he completed rehab or not, but he was sober when he came home and AA was his religion for a long time.
He wasn't drinking, but he was still always up for a fight. Late at night they would argue and one night a large vase was thrown by one of them. Another night it was the phone, a heavy late 70's rotary dial phone. One night they came to check on me while I was asleep and got into a shoving match when they both tried to peek in the door at the same time. I pretended to be asleep.
When my mom would go out for her sorority meeting, he would seethe and get worked up that she wasn't there and would imagine all the ways that she was betraying him until he took it out on us. More than once he would come into my room and wake me up to make me clean it. If it was already kind of clean? He would just walk along the shelf with his arm out and knock everything to the floor.
I was in first grade being kept up on school nights just so he could poke at her, to try and make her stay home.
There was a lull for a couple years, we put on a good face. Then in third grade, things began to veer off the rails just a little bit. I can't remember if there was a triggering event, or if my brain was just already wired for worst case scenarios, but something happened in third grade, I was suddenly too scared to go to school. I could not handle it. I didn't like my teacher at all, but I think it was something at home. I would fight going every morning, looking back I recognize that I was having full on panic attacks. And then resulted to gagging myself until I vomited every morning to get to stay home. And I would take super hot baths and stay in the tub as long as I possibly could, I was probably the cleanest third grader in the world, I don't know if I felt safe in the water or if it was part of my contamination phobia/OCD. It went on for a few weeks. Until they brought me to school and my father had to carry me to my classroom and practically put me in my desk in front of everyone.
And then I had to talk to a nice lady named Karen every few weeks at school. The social worker.
And I would have been nine.
Sometime that summer I found his handgun. And I put it back because I was scared of being caught. But I was also scared that he might kill us with it. And then the next winter we moved out and he was dead by spring. Thirty-one years ago this weekend, actually.
I was listening to today's segment and after some typical relaxation routines, she says to focus on when I was "ten years old and had no worries at all. "
And that kind of stopped me cold and all day long it's been running through my head. Because my life was being turned upside down and shaken when I was ten years old. My mom packed us up and moved us out, they were going to get a divorce, my dad just...unraveled, there were horrible, terrible fights where I was basically sobbing hysterically and begging them to stop yelling. They ignored me until my mother would tell my dad to look at me and see if this is what he wanted. To do this to his daughter. Again. Neither one was willing to stop fighting until I could be the weapon to use against the other: "Look what you're doing to Annie!"
And then he was dead and I blamed myself for it, we moved back to our house and I felt like I had to take care of everyone. Someone had to take care of us.
I can't actually think of any age where I had no worries at all. My mother once tod me a story about how I was such a good baby. On Saturday mornings she did the big housecleaning for the week, and to keep me busy, he'd give me the old TV guide in my crib. And I would rip every single page into strips while she worked. My OCD therapist was quite intrigued at that.
One of my earliest memories is hiding with my mother and infant sister in the way back of this storage closet because we were hiding from my father. He was drunk and spoiling for a fight and we had to hide until he passed out. I would have been two.
When I was five, he said goodbye to us so he could go get help. He did inpatient alcohol detox at Hazelden. I think he was gone for a few weeks. I don't know if he completed rehab or not, but he was sober when he came home and AA was his religion for a long time.
He wasn't drinking, but he was still always up for a fight. Late at night they would argue and one night a large vase was thrown by one of them. Another night it was the phone, a heavy late 70's rotary dial phone. One night they came to check on me while I was asleep and got into a shoving match when they both tried to peek in the door at the same time. I pretended to be asleep.
When my mom would go out for her sorority meeting, he would seethe and get worked up that she wasn't there and would imagine all the ways that she was betraying him until he took it out on us. More than once he would come into my room and wake me up to make me clean it. If it was already kind of clean? He would just walk along the shelf with his arm out and knock everything to the floor.
I was in first grade being kept up on school nights just so he could poke at her, to try and make her stay home.
There was a lull for a couple years, we put on a good face. Then in third grade, things began to veer off the rails just a little bit. I can't remember if there was a triggering event, or if my brain was just already wired for worst case scenarios, but something happened in third grade, I was suddenly too scared to go to school. I could not handle it. I didn't like my teacher at all, but I think it was something at home. I would fight going every morning, looking back I recognize that I was having full on panic attacks. And then resulted to gagging myself until I vomited every morning to get to stay home. And I would take super hot baths and stay in the tub as long as I possibly could, I was probably the cleanest third grader in the world, I don't know if I felt safe in the water or if it was part of my contamination phobia/OCD. It went on for a few weeks. Until they brought me to school and my father had to carry me to my classroom and practically put me in my desk in front of everyone.
And then I had to talk to a nice lady named Karen every few weeks at school. The social worker.
And I would have been nine.
Sometime that summer I found his handgun. And I put it back because I was scared of being caught. But I was also scared that he might kill us with it. And then the next winter we moved out and he was dead by spring. Thirty-one years ago this weekend, actually.
Tuesday, May 19, 2015
Sew and sew
Since I have this fancy sewing room, I am using it.
I dug out a quilt top I made forever ago, and promptly screwed it up when I tried to put a binding on it.
So, I need to practice binding, so I made some runners. One of them....I had to cut the binding off and now it's an oddly thin scrappy runner with a terrible binding. Then I made another one from scraps and if you don't look closely, it's not as horrible. And I got to practice making strips and joining them to make a scrappy binding, which I think is actually pretty cute.
And then today I was feeling all kinds of sorry for myself and sad. But I figured out what this really pretty pre-quilted fabric I bought a while ago wanted to be. A cute bag with pleats. So I gathered together some options and then looked all over the interwebs for a pattern that I liked.
I didn't see any I loved, so I decided to cobble together my own thing.
And then put it all together wrong.
Oops. The lining was inside out when I turned it. I had to rip.
And then I screwed up the lining again when I went to tack it down and I will have to fix it. But I can fix it tomorrow instead of tonight.
I dug out a quilt top I made forever ago, and promptly screwed it up when I tried to put a binding on it.
So, I need to practice binding, so I made some runners. One of them....I had to cut the binding off and now it's an oddly thin scrappy runner with a terrible binding. Then I made another one from scraps and if you don't look closely, it's not as horrible. And I got to practice making strips and joining them to make a scrappy binding, which I think is actually pretty cute.
And then today I was feeling all kinds of sorry for myself and sad. But I figured out what this really pretty pre-quilted fabric I bought a while ago wanted to be. A cute bag with pleats. So I gathered together some options and then looked all over the interwebs for a pattern that I liked. I didn't see any I loved, so I decided to cobble together my own thing.
And then put it all together wrong.
Oops. The lining was inside out when I turned it. I had to rip.
And then I screwed up the lining again when I went to tack it down and I will have to fix it. But I can fix it tomorrow instead of tonight.
Sunday, May 10, 2015
An all new craft cave
So, the painting and sprucing took a while, but I am pretty happy with how it all came out. I still need to find a cover for the existing ceiling light, or get new light if it's not a standard size. The identical one in our bedroom exploded a couple summers ago, raining broken glass all over the entire room. So we took this one down in case it was a flaw in the glass. And then we didn't use this room for anything but storage so we never got around to getting a new cover. So it's a bare bulb for now, which is not cute at all.
It will never be this clean again. The curtains fabric was how I picked the pain colors and the blue table is on it's third or fourth coat of paint. it has been white, red, cream, and now dark turquoise. The shelves are all closet cubes from target and I move them around like big ass Tetris pieces to fit whatever space I use or when I get bored. The floor is chalk paint with two coats of satin polyurethane.
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| My sign was getting all creased by staying rolled up, I figured might as well hang it up. |
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| I have so much fabric! My personal stash is in the closet. This is all AP stuff. |
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| My yarns, let me show you them. And my beading supplies. |
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| Looking into the room.The floor came out so well, I loooooove it. And I have one trash can for trash, and one for fabric scraps to be used somehow. Eventually. |
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| Because lights are fun. |
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| I had a small math fail and the curtains aren't as full as they should be. But I love them anyway. They are fully lined. And now the neighbor's living room won't be on full view when I am working. |
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| ZIPPERS. Most of them. And my dishtowels that need to be ironed. Why the fuck did I buy dishtowels that need to be ironed? Seriously. My ironing board cover is gross, I know. It's just water, Mary Ellen's Best Press spray, and scorch marks. Mostly scorching. |
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| It's a giant button that's a tin. How could I not have it? |
It will never be this clean again. The curtains fabric was how I picked the pain colors and the blue table is on it's third or fourth coat of paint. it has been white, red, cream, and now dark turquoise. The shelves are all closet cubes from target and I move them around like big ass Tetris pieces to fit whatever space I use or when I get bored. The floor is chalk paint with two coats of satin polyurethane.
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