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atypical ductal hypersplasia fun times
Dec. 4th, 2025 07:27 pmSitting on the couch with the 2nd little space heater I bought, it's really nice, I love it, I'm keeping it. The one in my room is nice and can stay put, this one I bought for the studio before the heat got fixed, I can take it there for chilly mornings as it still takes a good hour for the upstairs to warm up while I get ready for work, but I love it for this spot. The couch is next to two big windows and ends up being the coldest spot in the house, our "ventless" gas fireplace is inoperable, so this is a nice way to get cozy. It is small and lightweight so I can take it to work and back if I wish. This will do. I bought this brand specifically because the reviews said it didn't smell weird. My space heater upstairs has a mild plastic smell when it runs, not horrible but I don't love it. This one is better.
Tyler is reading next to me on the couch. He was kind enough to pick me up from the MRI today, and spent some time here checking out the house for the first time, and hanging out with Josh before he left for rock climbing.
I am still a bit woozy from the gadolinium injection. The experience of getting the IV in for that was the worst part of the MRI, which was what I expected. Unfortunately they did not give me valium, so I am sober and had to do the scan without that. Apparently I was supposed to get it at the pharmacy myself and take it beforehand, but nobody explained that, I've only ever been given valium by doctors at the time of the procedure so I didn't know.
I had requested a vascular specialist for this, but the tech asked if she could "take a look" before calling them, because "they are really busy." I tried to gently explain that the trouble with looking is that my skin is translucent and my veins look deceptively easy. I am not easy. I am not just a "hard stick." it's more difficult than that. My skin's appearance instills over-confidence. She took that as a no, and called the "vascular team," which turned out to be just one very rushed and very grumpy 60-something guy.
He roughly strapped a choker band on my arm way too tight, poked at my forearm and said aloud, "I don't know why I was called, you have veins popping all over the place." I explained, again, as calmly and quietly as I could, that my veins are deceptive and they roll. He wasn't listening, grabbed a needle, grabbed a vein, and started jabbing. And jabbing. And digging, and more jabbing. "I guess I'm gunna eat crow," he admitted, and I asked him to stop digging around in my muscle. He stopped, yanked the failed needle and iv tube out, and wiped down another spot on my arm with alcohol, as my entire body started to shake. I asked him to give me a minute. He silently gathered his stuff and barked at the techs to call "call me when you need me" and left. No apology, no nothing, just kinda stormed out.
I cried a bit and asked for more blankets as I was shivering and my heart raced and my hands turned to ice. It wasn't cold in the hall outside the MRI room, this is just what my body does when it feels attacked.
I did my breathing and tried to get calm again. The girls gave me heat packs to hold. I felt much better after a few minutes.
The tech asked if she could try, and I allowed.
She looked at the veins in my opposite arm and said, "I see what you mean about being deceiving, everything looks great. But you know your body best." (I've never heard a male health care provider say these words.) She tried a vein. She failed to land. When she started wiggling, after a few seconds, I asked her stop. "If you don't get it the first try, you're not going to get it, that doesn't work for me, I've never once had that work."
She got really curious and asked me more about my experiences and what's going on with my "condition" and if I knew what it was called. "It's more than rolling veins, because when that's the case we can tell when we manipulate them, but yours don't feel like they're rolling. Do you know what the term for this is?" I told her I don't have a term for it other than what my grandmother called it, which was "fragile veins," but that term is not used anymore in medical settings. It's genetic, my grandmother almost died in the hospital when she miscarried because they couldn't get a vein.
She went back to the right arm and she tried one more time and this time was successful. She was patient and calm and I was as calm as I could be given the situation, and she did note that this particular vein didn't roll so I should make note that it's a good one to try. sigh. Anyway. She thanked me for letting me try.
It's just so hard because this happens so often. I don't ask for the vascular specialist because I am a whiner. I ask because I have had a lifetime of bad experiences with my veins. And it just sucks to not be believed or understood, until after the fact. This tech was the first person I've ever had to show genuine interest in my condition and validate that my veins do not behave like any she's ever seen.
After all that the scan itself was pretty easy, at times I was pretty relaxed, despite all the noise, and felt like I could almost dose. I was face down with my arms in front of me but unlike during the biopsy, my padding was very soft and comfy.
I walked to the coffee shop after to shake off the dizziness and nausea, and get a latte. I started early so finished early, Josh had very kindly driven me there and my arrival was about 45 minutes early. The MRI itself was quite quick actually, so I was done and out after an hour and a half or so total, even with all the struggles with the IV.
It was raining but not too hard, so I walked to the next coffee shop, where Tyler was waiting, instead of having him drive to me. It was nice to get some air anyway. We chatted for a while. He's good at reframing and getting my mind off things. I blurted out a thank you for being here for me and choked on tears before finishing the sentence, as I tried to say, "having you here is really nice, I feel better." erf.
My doctor wrote me back at 3:45pm to tell me the results of the MRI, which were the best possible results - no other signs of any issues other than a small portion of tissue at the point of the biopsy tissue marker. Nothing in the other breast.
I talked to OHSU this morning and scheduled a virtual visit to go over my case for a second opinion, they want to look at the physical specimen of the biopsy sample themselves so that appt is only three days ahead of my scheduled surgery. But, I was able to move my Savi scout placement to the same day as the surgery, so that if I do end up canceling it, after talking with the OHSU surgeon, I won't have to get that procedure done at all.
I wanted to try to go to shadowplay tonight, but I failed to henna my hair, and my arm is bruised and swollen from the guy who jabbed me the first time, and I just feel the opposite of sexy, the gadolinium also needs to be flushed from my system so I'm drinking fluids and peeing constantly and that isn't conducive to dancing.
I'm going to reschedule the two ladies who wanted sparkles on Sunday so that we can go get a tree, Tyler can come with us if we go Sunday. There is a nice looking farm in Sandy but we can also go to the forest if he insists. I need to pick up a stand, Tyler says he has one but I'm not feeling super confident about that, heh. He did drop off an electric chainsaw for us, though, and he has some helpful suggestions for the house actually. Our dishwasher failed to dry dishes last night and he said our homeowners insurance folks can fix it for us, the hoses are too long and wrapping all over the place which leaves standing water in the dishwasher, that's fixable. He's been a homeowner for 20 years, it's nice to have helpers.
I feel sad that I have distanced myself from my step-family, as they are good helpers. I just, have needed some time away from them I guess. I can't really explain why and I feel guilty about it, but it's just how I feel, I dunno. sigh.
Working all day tomorrow. I figured I wouldn't be good for much else, so might as well sparkle. It'll be good, my customers are lovely.
Just really low on energy and mood. Therapy in the morning. It's been a minute. I'm sure his work gets harder around the holidays.
....
I had this moment in the MRI scanner, once the disorientation and fear of being stuck undressed face down in a tube and told not to move while loud noises thumped all around me dissipated, feeling my arm ache from the jabs and the weird feeling of the IV, trying to breathe softly to stay as still as possible, of thinking about all the things my poor little body has been through, over the 50 years of her life. I thought about the first MRI and how hard that was, how scared I was through the hip reconstruction process. I was thinking about a post I'd watched on insta this morning about how when one is severely depressed or worse, positive affirmations don't help, and a better place to start is neutral affirmations. A good place to start for this lady was, "I refuse to hurt myself today." I thought about how difficult this sounds for me, and how I've habitually hurt and mistreated my body (and my mind) so much throughout the course of my life. I thought about how my little body did not deserve that, and I felt sorry for her, and I started to weep and and had to stop to avoid sobbing and messing up the scan.
I want to take better care of myself, I want to stop hurting myself. I have worked so hard at this, quitting substances, exercising, eating better, designing a gentler life, distancing myself from a brother who steals from me, who has injured me, who invariably insults me, degrades and manipulates me, but I still have not figured out how to be kind to myself and not hurt myself. I still hurt myself with junk food binges, with bad sleep and hygiene habits, with caffeine, with thoughts. Terrible thoughts. I keep finding ways to surreptitiously injure myself, no matter how many self-destructive habits I try to stop or redirect. This body does not deserve that, she did not ask for that, she was not born to be tortured by her owner. I feel so guilty for treating her this way. I want to treat her better and apologize and try to be a safer place for her going forward, to be a better owner, to be a better protector. She has been here for me in so many ways and I have not treated her right. I am so sorry about this. I'm sorry she wasn't cared for the way she deserved. I'm sorry her caretaker was trained to hate her, and punish her just for existing. She didn't deserve that.
I have had to be my own parent for a long time, from too early an age, and I have not done a good job. I want to learn to do better.
It's 9pm, all I want to do is sleep. I should try to drink more tea first. I think I will bring my tea to bed. Try again in the morning.
Tyler is reading next to me on the couch. He was kind enough to pick me up from the MRI today, and spent some time here checking out the house for the first time, and hanging out with Josh before he left for rock climbing.
I am still a bit woozy from the gadolinium injection. The experience of getting the IV in for that was the worst part of the MRI, which was what I expected. Unfortunately they did not give me valium, so I am sober and had to do the scan without that. Apparently I was supposed to get it at the pharmacy myself and take it beforehand, but nobody explained that, I've only ever been given valium by doctors at the time of the procedure so I didn't know.
I had requested a vascular specialist for this, but the tech asked if she could "take a look" before calling them, because "they are really busy." I tried to gently explain that the trouble with looking is that my skin is translucent and my veins look deceptively easy. I am not easy. I am not just a "hard stick." it's more difficult than that. My skin's appearance instills over-confidence. She took that as a no, and called the "vascular team," which turned out to be just one very rushed and very grumpy 60-something guy.
He roughly strapped a choker band on my arm way too tight, poked at my forearm and said aloud, "I don't know why I was called, you have veins popping all over the place." I explained, again, as calmly and quietly as I could, that my veins are deceptive and they roll. He wasn't listening, grabbed a needle, grabbed a vein, and started jabbing. And jabbing. And digging, and more jabbing. "I guess I'm gunna eat crow," he admitted, and I asked him to stop digging around in my muscle. He stopped, yanked the failed needle and iv tube out, and wiped down another spot on my arm with alcohol, as my entire body started to shake. I asked him to give me a minute. He silently gathered his stuff and barked at the techs to call "call me when you need me" and left. No apology, no nothing, just kinda stormed out.
I cried a bit and asked for more blankets as I was shivering and my heart raced and my hands turned to ice. It wasn't cold in the hall outside the MRI room, this is just what my body does when it feels attacked.
I did my breathing and tried to get calm again. The girls gave me heat packs to hold. I felt much better after a few minutes.
The tech asked if she could try, and I allowed.
She looked at the veins in my opposite arm and said, "I see what you mean about being deceiving, everything looks great. But you know your body best." (I've never heard a male health care provider say these words.) She tried a vein. She failed to land. When she started wiggling, after a few seconds, I asked her stop. "If you don't get it the first try, you're not going to get it, that doesn't work for me, I've never once had that work."
She got really curious and asked me more about my experiences and what's going on with my "condition" and if I knew what it was called. "It's more than rolling veins, because when that's the case we can tell when we manipulate them, but yours don't feel like they're rolling. Do you know what the term for this is?" I told her I don't have a term for it other than what my grandmother called it, which was "fragile veins," but that term is not used anymore in medical settings. It's genetic, my grandmother almost died in the hospital when she miscarried because they couldn't get a vein.
She went back to the right arm and she tried one more time and this time was successful. She was patient and calm and I was as calm as I could be given the situation, and she did note that this particular vein didn't roll so I should make note that it's a good one to try. sigh. Anyway. She thanked me for letting me try.
It's just so hard because this happens so often. I don't ask for the vascular specialist because I am a whiner. I ask because I have had a lifetime of bad experiences with my veins. And it just sucks to not be believed or understood, until after the fact. This tech was the first person I've ever had to show genuine interest in my condition and validate that my veins do not behave like any she's ever seen.
After all that the scan itself was pretty easy, at times I was pretty relaxed, despite all the noise, and felt like I could almost dose. I was face down with my arms in front of me but unlike during the biopsy, my padding was very soft and comfy.
I walked to the coffee shop after to shake off the dizziness and nausea, and get a latte. I started early so finished early, Josh had very kindly driven me there and my arrival was about 45 minutes early. The MRI itself was quite quick actually, so I was done and out after an hour and a half or so total, even with all the struggles with the IV.
It was raining but not too hard, so I walked to the next coffee shop, where Tyler was waiting, instead of having him drive to me. It was nice to get some air anyway. We chatted for a while. He's good at reframing and getting my mind off things. I blurted out a thank you for being here for me and choked on tears before finishing the sentence, as I tried to say, "having you here is really nice, I feel better." erf.
My doctor wrote me back at 3:45pm to tell me the results of the MRI, which were the best possible results - no other signs of any issues other than a small portion of tissue at the point of the biopsy tissue marker. Nothing in the other breast.
I talked to OHSU this morning and scheduled a virtual visit to go over my case for a second opinion, they want to look at the physical specimen of the biopsy sample themselves so that appt is only three days ahead of my scheduled surgery. But, I was able to move my Savi scout placement to the same day as the surgery, so that if I do end up canceling it, after talking with the OHSU surgeon, I won't have to get that procedure done at all.
I wanted to try to go to shadowplay tonight, but I failed to henna my hair, and my arm is bruised and swollen from the guy who jabbed me the first time, and I just feel the opposite of sexy, the gadolinium also needs to be flushed from my system so I'm drinking fluids and peeing constantly and that isn't conducive to dancing.
I'm going to reschedule the two ladies who wanted sparkles on Sunday so that we can go get a tree, Tyler can come with us if we go Sunday. There is a nice looking farm in Sandy but we can also go to the forest if he insists. I need to pick up a stand, Tyler says he has one but I'm not feeling super confident about that, heh. He did drop off an electric chainsaw for us, though, and he has some helpful suggestions for the house actually. Our dishwasher failed to dry dishes last night and he said our homeowners insurance folks can fix it for us, the hoses are too long and wrapping all over the place which leaves standing water in the dishwasher, that's fixable. He's been a homeowner for 20 years, it's nice to have helpers.
I feel sad that I have distanced myself from my step-family, as they are good helpers. I just, have needed some time away from them I guess. I can't really explain why and I feel guilty about it, but it's just how I feel, I dunno. sigh.
Working all day tomorrow. I figured I wouldn't be good for much else, so might as well sparkle. It'll be good, my customers are lovely.
Just really low on energy and mood. Therapy in the morning. It's been a minute. I'm sure his work gets harder around the holidays.
....
I had this moment in the MRI scanner, once the disorientation and fear of being stuck undressed face down in a tube and told not to move while loud noises thumped all around me dissipated, feeling my arm ache from the jabs and the weird feeling of the IV, trying to breathe softly to stay as still as possible, of thinking about all the things my poor little body has been through, over the 50 years of her life. I thought about the first MRI and how hard that was, how scared I was through the hip reconstruction process. I was thinking about a post I'd watched on insta this morning about how when one is severely depressed or worse, positive affirmations don't help, and a better place to start is neutral affirmations. A good place to start for this lady was, "I refuse to hurt myself today." I thought about how difficult this sounds for me, and how I've habitually hurt and mistreated my body (and my mind) so much throughout the course of my life. I thought about how my little body did not deserve that, and I felt sorry for her, and I started to weep and and had to stop to avoid sobbing and messing up the scan.
I want to take better care of myself, I want to stop hurting myself. I have worked so hard at this, quitting substances, exercising, eating better, designing a gentler life, distancing myself from a brother who steals from me, who has injured me, who invariably insults me, degrades and manipulates me, but I still have not figured out how to be kind to myself and not hurt myself. I still hurt myself with junk food binges, with bad sleep and hygiene habits, with caffeine, with thoughts. Terrible thoughts. I keep finding ways to surreptitiously injure myself, no matter how many self-destructive habits I try to stop or redirect. This body does not deserve that, she did not ask for that, she was not born to be tortured by her owner. I feel so guilty for treating her this way. I want to treat her better and apologize and try to be a safer place for her going forward, to be a better owner, to be a better protector. She has been here for me in so many ways and I have not treated her right. I am so sorry about this. I'm sorry she wasn't cared for the way she deserved. I'm sorry her caretaker was trained to hate her, and punish her just for existing. She didn't deserve that.
I have had to be my own parent for a long time, from too early an age, and I have not done a good job. I want to learn to do better.
It's 9pm, all I want to do is sleep. I should try to drink more tea first. I think I will bring my tea to bed. Try again in the morning.
