Absolutely love how my cardiologist stared at my chart for about a minute and then went “Well...I mean sometimes people grow out of this...”
Thanks so much doc I’m glad that’s what our treatment plan has come to.
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@sendsalt
Absolutely love how my cardiologist stared at my chart for about a minute and then went “Well...I mean sometimes people grow out of this...”
Thanks so much doc I’m glad that’s what our treatment plan has come to.

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I'm so tired of how every single day I have to push myself to the absolute limit to accomplish the minimum of what I need to do. I'm not just tired at the end of the day--I'm completly empty. I'm so exhausted that moving and thinking require concious expenditures of energy. And I wake up in the morning barely refreshed at all. I want to do so much more than the bare minimum. And at the same time I wish I could do less because I'm just so done with being so exhausted.
I'm going through another period of being frustrated with Archie. Adolescence with a SDiT is really difficult. The regression is frustrating because it feels like it's constantly one step forward, two steps back. And even though I logically know this is perfectly normal, it still makes me worried about the possibility of him washing.
I was so proud of how far his heel had come and suddenly he's pulling again, which is much harder to deal with now that he's 60lbs than it was when he was only 25lbs! He's so aloof and distracted in public. Adding in a gentle leader has helped a lot with the trying to say hello to strangers, but he still gets overly excitable if we pass a neighbor when we're doing neighborhood walks on just his martingale.
My dad really boosted my confidence the other day, though. There was a butter wrapped on the ground that had fallen out of the trash and Archie left it alone as soon as I gave him his leave it command. My dad casually commented that that's a really hard thing for a dog to ignore and that he sometimes forgets how young Archie is because he's gotten so big and is honestly pretty well-trained for his age. I've been trying to hold on to this and remember that he's actually in a great place for being a 7 month old in the middle of adolescence. His recall has gotten so sharp lately, which is awesome, and his confidence has soared in the last month or two. He's gotten really good at knowing the difference between being on-duty and off-duty. He is making progress--it's just hard for me to see it sometimes because I'm always focused ont he ways he's regressing instead. And I do need to be very aware of that, because it's important not to let too much backsliding happen during his adolescence, but I need to remember the ways he's doing really well too.
I'm taking him to the pet store in a little bit and to focus purely on having fun and being engaged during this little PA trip. If it doesn't go well, I'll pull him from PA training for a while, which isn't a big deal. I'm going to take a ton of steps back and put all my focus back on leash manners, engagement, and keeping training fun for him, and hopefully that'll help us get back on track.
Kinda frustrated with my appointment yesterday. I told my cardiologist that I didn’t want to get autonomic testing done if it was just going to confirm the diagnosis that I’ve had for two years and wasn’t going to offer new treatment options. He convinced me to do it and based on what the EMG tech told me after my tests yesterday, the results pretty much just show that I have POTS. I have a telehealth appointment with the actual neurologist on Monday to go over the results in more detail, but right now I’m just annoyed about the whole thing. Especially given that the hospital I had to go to was an hour and a half away and autonomic testing is expensive...I think that information is definetly power when it comes to your health, but I got the feeling from the tech that the info we got isn’t going to be very useful.
Is it rude to take a quick nap at the doctors if you’ve been waiting for over a half hour and had to get up at 5 am for the apppintment?
Asking for a friend

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My physical conditions consume my life so much that sometimes I forget that I'm mentally ill. I missed a few days of a medication because of a refill issue and the fallout from that has left me minorly hypomanic for the last couple of days as the levels in my body get back to normal. My body has spent the entire day today sending me signals that it's about to shut down if I don't give it a rest, but I've spent the entire day totally energized and determined to accomplish everything on my to-do list. I'm going to an apple orchard tomorrow and my first concerns were about how my body will handle that physically, but on the back of my mind there was anxiety about the possibility of an access issue with my SDiT when I go, anxiety that eventually built so much that I had to take my emergency anti-anxiety medication. And then I was right back to dealing with my current headache and organizing my notes on what I want to talk to the neurologist about next week, never actually dealing with the anxiety I was experiencing and just muffling it with ativan instead.
I spent my adolescence and first few years in college being Mentally Ill, capital M capital I. It was a big part of my identity, more than it should have been in hindsight, but it was. And then suddenly, just when my mental illness was finally consistently under control, I became chronically ill. I am so lucky that I haven't had a severe mental health episode since developing dysautonomia, and I honestly don't know what I would do if that happened--I can only keep my fingers crossed that my medications don't stop working.
But I also need to pay better attention to what's happening with my mental health. One of my therapists told me once that a strength of mine was that I'm very aware of what's happening to me pschologically, even if I don't always have control over it. I think I've become so absorbed in being aware of what's happening to me physically and how I'm going to deal with that--along with being absorbed in what's happening with Archie, which is related to my physical health--that I've stopped checking in on myself about how I'm doing psychologically. Now that I'm settling back to my baseline state after a bit of mild hypomania where I ignored the type of physical warning signs that would have stopped me in my tracks normally, I'm realizing that keeping on top of my mental health needs to be a bigger priority in my life again.
Thank god I finally get to see neurology next week because these headaches are kicking my ass lately.
I think I need a new therapist.
I wanted to see someone specifically because of a need to talk through and better manage stress releated to my chronic health conditions. And the first few sessions went pretty well, but the last two have been pretty discouraging. Today's in particular was a disaster. I honestly felt like she was just trying to convince me that things were good so that she could get off the phone, and I don't know if it's because something's going on in her life and she was in a rush, or if she just really doesn't get chronic illness )despite supposedly being very experienced with it).
She just kept steamrolling me today. She'd ask me basic things like what my daily routine is, I'd tell her, she'd decalre that it sounds like a good routine and move on before I could say anything else. She told me that I'm being nice and productive and I tried to explain how it doesn't feel that way to me and she pretty much ignored it and moved on. I tried to talk to her about the doctor's appointment that I had on Wednesday that I've been so anxious about and she wasn't interested in discussing it. I try to talk about an upcoming challenge I have with Archie next week and she's not interested. She asks me if I've been getting sleep, I say "yeah I'm getting much more than I want" and she goes "great, so you're sleeping, that's excellent" and moves on. And then she cuts our 50 minute session short by 30 minutes. (And yeah, I could have spoken up and told her that I want to go back and talk about the stuff that she'd just breezed over, but she'd shut everything down so firmly the first try that it just didn't feel worth it.)
Look. I'm in school to become a counselor. I know that they're human and have off days and I also know that not every counselor is a good fit for every client. I think a part of our disconnect is that we've only ever met through virtual methods, and I also think that we're just not a good match for each other. I don't plan to see her again, but I'm not upset with her or anything. I'm just frustrated in general, I think. At least for me, it's already hard to talk about my health in any way that feels like 'complaining.' It's just discouraging to encounter a therapist who reeinforces the idea that trying to talk about health-related stress is complaining.
I had an appointment today to start getting to the bottom of my fatigue issues and it was the best experience I've ever had with a medical progessional. I don't have a long relationship with this doctor but I felt like from the second she walked into the room that she was 100% on my side and believed everything I said. I'd been afraid about coming in to talk about symptoms that aren't at all physically measurable. And I was so worried that she was going to tell me that it's just my dysautonomia or medications causing it. We discussed those two possibilities (because they are definetly possibilities, if not very likely based on the range of symptoms I'm experiencing) but also a dozen other options. She understood why I was worried about it being chronic fatigue syndrome, and didn't act like I was just jumping to sme worst case scenario for no reason.
She ordered what seemed like ten thousand labs to rule out everything we possibily can from bloodwork, and then we're going to see if the neurologist I see at the end of the month has any other suggestions that this doctor couldn't think of, and also start looking into the possibility of it being a REM sleep issue. If everything gets ruled out from that, I'll probably wind up with a chronic fatigue disorder diagnosis. Which would suck, but for once the negative isn't the part I'm focusing on tonight.
It was just so comforting to feel on the same page with a doctor. She understood why I'm worried it's CFS but also totally understood that just because I suspect that, it's not the answer I want. I think it's too common for doctors to think that patients who come in saying "I think I have such-and-such-disease" are saying that they want to be diagnosed with such-and-such-disease when that's usually not the truth. It just meant a lot to me to have this connection with a doctor who seemed to understand where I was coming from and respected me as an informed person.
Sometimes I feel like I'm using my chronic illness as an excuse. I'm broke, I take naps every day I can, I live rent-free with my parents...I want a better job, or to at least work more hours at my current shitty job to make some more money. But everytime I think about taking a step towards improving the job situation it seems like I find a reason I can't make a change because of my illness. And I think that they are legitimate reasons, but sometimes I doubt myself.
I should just ask for more hours and power through it. (I can't, I can barely recover enough on my time off to make it through the short shifts I have a few days a week.) I should just apply for a new job, one that I'm actually passionate about. (I guess I theoretically could, but it makes a lot more sense to wait until after this month because of the several important doctors appointments coming up that could change the direction things go for me.) But I keep thinking about the shoulds, about how if I just did the thing I could be making progress forward in my life instead of being stuck where I am.
Grad school has been the beacon of hope for me, since it's the only thing that makes me feel like I'm actually still progressing. But it's the first week of my single class this semester, we don't even have a virtual class meeting, and I'm already struggling to get my work done. I have the free time to do it in, but the energy that it takes to do my readings, absorb information, and take notes drains me so quickly and I can't do hours of schoolwork at once anymore. And that's only going to get worse as the semester picks up.
I just don't know what to do sometimes. I try to keep in mind that once Archie is fully trained, things will be easier because he'll be able to assist me. But right now, that feels so far away and all I can see in my future is being stuck right where I am forever--working a shitty job a few hours a week, living at home with my parents while my siblings move forward with their lives, struggling to keep up with one class a semester in pursuit of a degree that I don't even know I'd be able to use.

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Showering with POTS is hard enough but it gets really annoying when the brain fog makes me confused about what I've already washed...I'm pretty sure I just conditioned my hair 3 times because I couldn't remember if I'd already done it yet.
I’m not comfortable taking Archie to my school’s campus yet because of his struggles with ignoring strangers, but I have to go up there and run a few on-campus errands tomorrow and I’m stressed about not having him with me. It’s crazy how comforting it is to have the very simple safety net of “if I get too sick I can rest and he’ll do DPT and I’ll recover easier.” He only has one task solidly trained and a couple other minor ones on their way to consistency, but it’s already such a relief to have him with me when I’m out alone. I feel safer with him now. While a part of that is probably the separation anxiety talking, it’s kind of a reassuring reminder that I made the right choice for myself by getting a service dog.
Wow I almost made it a whole two hours before having to go back to sleep today
I just had a presyncope episode that resulted in a collapse and came out of nowhere and I cannot believe that Archie, this beautiful dog, is mine. He calmly lay on my chest, waiting for me to regain the ability to sit up, and then performed perfect DPT while I cried with frustration into his shoulder. I can’t believe how this insane, goofball puppy switches into a mode of complete calm and focus as soon as he realizes I need help. Not being alone during episodes that can be genuinely scary means everything to me in this moment. I’ve been so upset these last few days about such a fixable behavior problem of his and tonight was such a reminder to step back and look at the bigger picture and appreciate his natural aptitude for helping and our incredible bond. He’s not the perfect SDiT and I’m not the perfect handler but I feel like we were meant to be a team.
(I know that this is sappy and incoherent—presyncope will do that to you)
I sent in a request to schedule a physical with my GP and mentioned in the notes section that I wanted to talk about the extreme fatigue I've been having. They asked me to tell them a little more about it and then immedietly told me that I needed to be seen earlier than they'd be able to get me in for a full physical. Which was suprising and freaked me out a little--before now I've been thinking that I have anemia or something which is exacerbating the fatigue I already get from my POTS. My biggest fear has been that it could be CFS, but the urgency with which they told me I needed to come in as soon as I could get scheduled my has my anxiety spiraling towards even worse directions, even though I know that's stupid.
Realistically, I know there's a good chance that I do have CFS, just based on the symptoms other than fatigue that have slowly made themselves known in the last 8-9 months. But I'm hoping so badly that it's something that's more fixable. This level of fatigue is almost unbearable some days and I genuinely don't know how I'll be able to move forward in my life, through grad school and internships and eventually (hopefully) into an actual job without a major decrease in it. But I guess that whatever happens at this appointment, I'll deal with it. I'll figure out how to make things work.
So anyways, I now have an appointment on the 16th to address the fatigue issues, and I still have a neurology consultation on the 30th that I'm both very excited and very scared about. Time for a fun month of medical anxiety!

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Archie and I went for a little walk at the park today and then headed to Petco for some PA training and to pick up a few things. I'm so proud of how far he's come. I feel like we're both getting better at anticipating what the other is going to do and he's starting to feel like an extension of myself. I knew that the bond between me and a service dog would be different than the bond between me and my pet dogs, and it's not that I love him more than I love them--it's just such a different relationship. Our bond indescribable in a way that the bond between me and my pet dogs isn't. With Archie, when he's walking by my side, it doesn't feel like he's seperate from me. It's so hard to explain but I'm so grateful for him--I'm grateful for the privelage to have a service dog in training in the first place, but I'm especially grateful that it's him, Archibald Loomis, as my other half.
I'm so worn out. I've been in a flare the last three days and right now I'm so fatigued I can barely think. I can't even focus on Archie, let alone take care of myself beyond the bare minimum.
But I have the next five days off work, and I'm going to use them to recharge mentally and physically, and to get back in the swing of things with Archie. We're taking the CGC test on Thursday (no pressure on him to pass this first time around, just to see what we need to focus on) and I'm really excited to do that with him--I'm hoping it will help me feel more confident in us as a team.
And the best news? It's finally under 80 degrees here! Mid to low 70s all next week and I couldn't be happier.