kellyannnavarre.bsky.social
Clinical Psych MA. Psych+Disability Studies UT & CSU Alum. PD ABCT Diversity Task Force Chair. The word you're looking for is Disabled #POTS #BPD #Fibro #BiInSci🌈 She/They
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And the fact that it is BPD makes it that much worse lol.
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Or a third thing somewhere: lived experience is good, but I'm a token and my research is viewed as less than but more implicitly, and my hard work and merit is attributed to "just lived experience" work
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I am so used to dealing with this contradiction of being both treated like a researcher with lived experience as a positive effective tool vs the complete opposite (less legitimate, less than) that lingers in the air..
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In some ways, it's a smack in the face to attribute all my blood sweat and tears to lived experience and not the hard work I've done. My lived experience didn't give me research super powers. I worked hard and effectively to do what I do.
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Lived experience can enhance science and research. It can contextualize work. Ask the right questions. Make it richer and more applicable.
If the work itself is shit, lived experience won't necessarily "fix" that. But this is a given.
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If anything the work I do takes MORE to be taken seriously. Related or not to my lived experience. Let's talk about DEI and the assumption that it lowers standards and merit because this falls right under that category.
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I DO think lived experience can be used in a way that is not helpful or ineffective, posted one example several weeks ago. I DON'T think we should carry a general rule that lived experience researcher = less empirical, less legitimate, less this or that. Yet that’s exactly the vibe I deal with.
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Thank you! I got some next to me now 🙂
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I am so exhausted I can't even open my new laptop
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My heart rate was 140
and my fever was 104. What the actual.
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Thank you so very much. I was hardcore reflecting on this today. Such a mix of emotions 🩵
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My sleep quality was so bad, getting out of bed 3-4 PM, & it got dark within 1-3 hours of waking. 2 PM was considered good for me, but that meant my day didnt start until 3-4 PM. The hopelessness I carried with me for 2 decades..No meds worked. Only for something like remeron to change my life.
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33) I feel a mix of emotions with anger and rage for what I have suffered through, acceptance, awe, fear, hope, determination and more. It really was. How long I suffered was truly preventable and a failure, but not my own.
And so I finally get to live... I see the possibility.
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32) I know people have had a privledge and nondisabled privledge over me my entire life. It hurts SO damn bad. I break down crying over how bad this just hurts. Did anyone have any idea how much my life was altered bc of this?
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31) And I am going to move forward no matter what. I am completely in awe. Is this what people did? You... slept? At night? Have you ever seen someone do something amazing that you cannot do (like idk the Olympics) because that is what it feels like to finally be able to do this.
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30) The epitome of what it means to exist had to shift. I do not know if people can understand the gravity of what that feels like, physically and mentally. Every now and then, I get scared about going back.. but it has been 6 CONSISTENT months already. This has NEVER happened.
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29) I now look forward to taking it & sleeping 8-9 hrs UNINTERRUPTED SLEEP, AT NIGHT, IN THE DARK! Unheard of! I feel hopeful, alive, awake, working in the morning, successfully alternating not just my sleep but the timing of my entire day. Eating, sleeping, doing things, EVERYTHING had to shift.
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28) They came back immediately. But when I started taking Remeron, they disappeared again. Just like when I was taking the other meds. I think that is SO interesting. Only a few studies have shown Remeron helps with these issues, but not a ton. I FULLY experienced this benefit.
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27) Well.. my autoimmune hives ALSO disappear and have never come back. Like years with autoimmune skin issues and even tested SSA positive, but the symptoms disappeared when I started taking Remeron. I got moved off the medication I was taking for some autoimmune symptoms, in order to take Remeron.
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26) I am able to adapt and hold down jobs that start in the early morning, even if it is above my current "baseline," because I still fall asleep with better quality, and it is adjusting accordingly. I have longer days. I function better. I focus better.
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25) Here I am, 6 months later, and I take it consistently at the same time each night. I fall asleep at nearly the same time each night now. I wake up and get out of bed at the same time each MORNING. I went from 1 PM, to 12:30, to 12, and now 11:45 AM.
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24) So I take 3.5-4 mg. It works PERFECTLY. Zero side effects, sedative but not incoherent or weak. I am not tired in the morning, my sleep duration is better but so is the QUALITY (unlike many sleep aids that actually make sleep quality worse, this has been shown to make deep sleep more likely).
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23) My other option was to decrease to ~half of 7 mg. The lower the dose, the more sedative, but prob only to a point. I thought it is likely a nonlinear relationship. It is not like if I take a crumb of Remeron, it would make me more tired than 7. But at what point would the effect decrease for me?
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22) However, 7 mg was way too sedative and I was too weak to really move. Opposite of what we wanted. I had a choice: I could either increase to 15 and see if the weakness and sedateness goes away, but if they were side effects and not necessarily the sedative impact, it would likely get worse.
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21) So... It took about two weeks to tweak the dose for Remeron and find the right one, but all I needed was 4 mg. It works such that the lower the dose, the more sedative the impact. 7 mg is more sedative than 15. If taken for more depressive purposes, 15-30 mg is the typical dose.
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20) I finally take my first dose in Aug, 6 mo ago. They were Rxd in March. That is how long it took me to take after losing consciousness from a medication in 2017 because of mishandling my care (happened to already be unrelated AT the hospital when it happened, didn't die but got admitted to ICU).
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19) They Rx me Remeron/Mirtazapine. Apparently it is an anti-depressant (not an SSRI, SNRI, Tricyclic, nor an MAOI, basically its cool own thing). Sometimes used to treat hives & autoimmune issues, too. It works on
serotonin and norepinephrine, but also has sedative and antihistamine properties.
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18) Without going into other needless detail that certainly didn't help the situation, a sleep specialist I saw in CLE finally just said... you need meds. Period. I was reluctant to take any because of prior horrible experiences, it took me almost 6 mo. to even take a single pill.
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17) Docs tell me my body is filled with all these stress hormones keeping me awake and functioning. I am not tired, sure, but it is not bipolar, nowhere near meeting criteria, but my body has just had to adapt for so long. I get dxd with circadian rhythm disorder + insomnia reinforcing each other.
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16) So then early-mid 20s I develop POTS, Fibro, and more autoimmune disorders. The fuller picture starts coming through. Autoimmune hives. Ruled out MCAS. Pre-lupus, they tell me. Doctors start telling me hey your body is kind of malfunctioning. The issue is I would not get "sleep-tired" at all.
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15) Meanwhile, it severely impacted me and my ability to regulate, my body, my quality of life, and more. I cannot even describe the pit of despair of like.. this is how I will live. And they just think it is insomnia. Wow. And not a soul did anything because I seemed high functioning.
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14) Or graduate after only 2 years of high school, 2 years early because you were in an accelerated program, or get nothing less than a 98% on any and all assignments all throughout undergrad +more. How are you functioning? I don't know, was my answer. I HAD to. I did not have a choice. Literally.
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13) not sleep prior nights did NOT change anything. Even more baffling to people was my capacity to function. I struggled severely, but I functioned with what seemed to be little impairment.. like how did you just complete the WAIS/WISC easily after not sleeping for 2 days straight.