I've been meaning to update for a while and haven't just cause... not doing great. I somehow managed to completely miss my psychiatrist appointment in November- they called me and everything and I just... don't remember. Because I missed my appointment I'm out of a bunch of my meds since the pharmacy confirms with them before a refill. There's only one, the clonidine, that I've been off of for a while- my psychiatrist was asking me how long it had been and I honestly couldn't remember. Like I couldn't even guess. And that's just kinda freaking me out a little bit? Especially when combined with everything else.
I have a feeling that the mental stuff is a bunch of factors and I'm trying to keep that in mind. My mom always says to "give yourself some grace." But it's just weird cause it hasn't been *this* bad in a while. I have ADHD and OCD among other things and the OCD has been getting significantly worse as far as the intrusive thoughts. Separating myself from the various neuroses in my brain has helped make it *less* distressing but it's still hard. I always say that my brain is trying to kill me and I think that for the most part it helps me separate Brain Weirdness from things I'm actually thinking as a person. I'm not sure if this is gonna mess me up long term, though. And right now even with that it's gotten harder to wave the impulses away. I've kinda gotten a little frantic with all my little rituals again.
The ADHD has been getting worse too. Mom had to come over last week to help me clean cause the house was so gross I was crying about it but was also too overwhelmed to start on my own. My problem with cleaning on my own is it feels like I clean for maybe five or ten minutes before I hurt so bad I have to lay down. Also because of the ADHD it's "out of sight out of mind" and so things I'm not actively thinking about can get very bad before I notice, and then by the time I notice it's bad enough that I launch immediately into getting overwhelmed. I like living on my own but out here in grandpa's old house I'm just so isolated that it's making things worse, I think. I did tell mom that I *like* living on my own but I'm not sure if I *should.* She's started looking into how much converting their garage into a bedroom + bathroom would be and I'm looking to see if I can go back to being listed as a dependent on their taxes. I figure at the very least, the government deciding if I count as Disabled Enough to be on disability is gonna take a while.
And to top it all off, on Monday I *thought* I was getting evaluated for a wheelchair. It ended up being not even a physical therapy appointment, he just talked at me the whole time. Told me that all he could do for getting me a wheelchair was writing a letter of medical necesity to my insurance... after verbally telling me he didn't want me to have a wheelchair. Cause "deconditioning." So my doctor referred me to the wrong person again. Meaning not only was it a waste of time but I need to do my own reasearch again and figure out who I need to be referred to and then tell her directly.
I'm just... so very tired.
It's more of the same- I don't know why I'm frustrated by it but I am. My dad's uncle passed so we went to see dad's cousin and my body decided the car ride was a good enough reason to throw up. I already sit in the front seat to try and calm down the nausea. Friday mom and I ran errands (I came into town to pick up a package) and I'm sweating badly enough that my whole back is wet while I'm in the store's motorized cart, and according to mom the store wasn't warm at all. Dehydration symptoms for no reason, the whole nine yards. It seems like I try to do anything and I either get dizzy and sweat buckets or my back and hips start hurting or both. I feel like I should be used to it by now but it's still just... I used to be able to actually do things.
I finally got my anxious brain in gear and asked my primary care doctor for a referral to a wheelchair seating clinic! And she's already put it in, so hopefully the clinic will call me soon! I think it was how exhausted I got trying to walk this past weekend, and all the symptoms hitting me like a brick. I know that it's not going to magically get better but being able to be out and about and stay seated will absolutely help, I know it.
So yesterday I went to the mall with a close friend, and we ate lunch, did a pop-up haunted hotel attraction, went to a couple stores, and left. I am *exhausted* today. Just completely out of it. I was fine after I got home (fell asleep just after midnight) but this morning I accidentally turned off my alarm and then slept for another two hours, woke up barely able to move, was starting to fall asleep again when I got up for lunch. Fell asleep on the floor right after I finished eating, and I'm *still exhausted*. And yes, it was a goodly amount of walking yesterday. Walking, and then sitting on my rollator and "shrimping" (propelling myself backwards cause my rollator only wants to go one direction.) I never used to be this tired and it's just so so frustrating.
Update on the cardiologist situation. So the sports cardiologist that my second cardiologist recommended has a *year long* waiting list. I just did a real quick search for doctors in my parents general area who do pots testing and fortunately the one that looked the most promising is in my network! I sent a MyChart message to my doctor with his name and they've already got the referral processing, so I'm optimistic both that this guy will have an opening soon and also that he won't be a "just do physical therapy you'll be fine" sort of person.
Had bloodwork recently- my white blood cell count and inflamatory markers are going back to normal? Which is good, but confusing, cause I actively have an infection right now. Gonna have to do tests for the nephrologist soon which I'm not looking forward to cause "collecting samples" for tests always triggers my ocd a ridiculous amount. I don't want to go into detail on here- nephrologist is kidneys. But I'm back on the meloxicam so I'm hoping that means moving around will hurt less.
I didn't bring up the wheelchair yet. Or the rehumatologist. I know I needed to- my excuse for myself is that I only like to talk about one "referral thing" at a time to avoid looking like a drug seeker or something. And my regular doctor is referring me to the sports cardiologist that the *other* cardiologist mentioned to test for pots. So that took up the referral slot in my brain. I need to at least message her about both, though. I don't know why I'm anxious about this.
In general the usual suspects are still *bad* or *slightly worse.* Mobility in general- I realized it's now hard for me to get in and out of my mom's car at least on the driver's side. Also nausea and general pots symptoms- I actually had to pull over on the side of the highway (rural highway- one lane going each direction but fast) to throw up for no reason other than my body deciding to throw a fit on my way into town for the last regular doctor's appointment. There's more "ice pack on my forehead" days too. Which is all more reasons why I need to message my doctor about the rehumatologist and a wheelchair.
My brain and my body are just not being kind to me lately. I drove into town to meet a friend (hour and a half each way) and all I did was sit on my rollator seat in a coffee shop for a couple hours and walk around an antique mall but between that and driving it was enough to take me out for *several days* after. Like, the next day I expected but several is excessive, even for my body being fussy. I don't know if something has changed, if it's the weather starting to change, or if it's more of my body just degrading. I'm back to a constant ache but it's worse than before, and what I mentally call "the skin tingles" are back- it feels like clusters of pin pricks, I guess? I get a mental image of those fireworks with the "crackle" at the end. Mostly surface level although occasionally deeper in my skin. Completely random. I had episodes of them a while ago, earlier in the year, and they went away for a while when I was on Cymbalta but that doesn't work with the rest of me so I had to get off of it. Joints are starting to hurt worse again too- I keep my wrist braces in the car but I might have to start wearing them again. I think the meloxicam helped with a lot of this before, but I think that causes too many issues/too much strain on my kidneys. I've told a couple people this before and it's still true: the frustrating part is how all the things wrong with me work together to make it worse. Osetoarthris issues made worse by scoliosis problems, meds that help some things making others worse, etc.
I did end up getting the forearm crutches for the barn, but I think I need to practice with them more. And probably go back to physical therapy. I think I'm putting weight on them weird cause I still get real real tired and hurty. Reno hasn't batted an eye at them- I love him so much. I'm going out there tomorrow to give him a bath and make sure no mud got in his absecess (someone didn't read the note to NOT let him out with everyone else and it's Very Frustrating) and I'm hoping the weather stays cooler cause that'll make it easier on My Symptoms.
Still need to talk to my doctor about the rheumatologist. I have the name of the one my mom's friends like, but the problem is she's out of network. I tried calling the office but I could barely hear the phone menu and wasn't hearing a "new patient" option so I got anxious and hung up. I keep meaning to message my doctor through MyChart and explain what's going on but I keep getting anxious about being Inconvienent. I'm very very tired of my brain.
Psychiatrist appointment I mentioned last entry went fine- same meds, higher dose of the ADHD meds but I haven't been on the higher dose long enough to see if it's actually doing anything. She suggested going back on Adderall but when I was on it before through the primary care office it was a pain and a half to refill cause they had me coming in constantly to do a urine analysis to make sure I was actually taking it and I think I was told I was the only one who could pick up my perscription of it... she seemed really confused and told me it would NOT be the same if I went on it at this office but I'm just paranoid enough about insurance. Also since I'm still in the application/waiting game stages for SSDI I'm paranoid that will somehow effect it too. I can feel things getting worse, mentally, but not in a way I can pinpoint yet, especially since I have yet to figure out if all the anxiety behind *everything* is justified.
General pain and mobility degrading is getting worse- when I took the trash out yesterday I was shuffling like Grandpa used to. I mentioned to Mom that I'm thinking about getting forearm crutches for when I'm able to get out to the barn cause just the cane isn't enough for all the walking I need to do when I'm doing stuff out there. There's a cool front come in which means it's more like 86F instead of 98F or higher so I'm hoping I'll start doing *better* than I have been lately as far as overheating and my body throwing out error signals but also the bar for "better" is in hell. But even if I don't overheat I know I'll still need mobility help. I found some forearm crutches that have a band around the arm cuff to keep it from falling off so hopefully if I get those I can stop worrying about stranding myself by putting my cane down and forgetting where it is. Reno has been very chill about the cane so hopefully he'll be chill about crutches.
I've been eating instant miso soup for breakfast in the mornings (apparently my Grandma also did that which is both good to know and also gives me the "oh mercy don't start projecting her onto me" anxiety) and also my period finally started so yay for no cysts and also the nausea is starting to even out a little bit- it's back to normal General Discomfort levels instead of whatever it was starting to do. I can't tell if my knees hurting more lately is due to the joints themselves or if my nerves are doing the Super Cute thing where I feel my cramps in my knees again. Which might be another specalist question, I don't know.
Speaking of specialists... I accidentally let the referral for the rehumatologist expire cause I kept forgetting to call/phone anxiety. But also my mom's friends were telling her about a rehumatologist they all see and, verbatim, "she actually listens to you!" So I'm going to message my doctor on MyChart and ask for a new referral to her instead. And also another x-ray. Also ask her about an OT. Friend was asking me if I thought it could be Long Covid which I guess would make sense- white blood cell count and inflamatory marker count have been elevated for over a year now. I think that's a rehumatologist question. If I get enough thoughts that are probably rehumatologist questions maybe my brain will finally put getting a hold of my doctor on the Approved Activities list.
Figuring out how I'm gonna do this little log... I guess I'll start with this week?
I have a psychiatrist appointment later this week, but really the most important thing I need to do is check on a referral for a rehumatologist. I've been meaning to do it but the symptoms are getting worse and things just fall out of my brain so easily. ADHD symptoms have been bad in particular, I told my mom it's like one giant game of Pong but each little thing is its own little ball. I think she gets it. But I haven't showered in... I don't rememeber. My face is super oily, even my hands are oily, and that's making sensory nonsense flare up too. I'm gonna shower today and then lay down until I recover well enough to get in the car and go to the store- I think part of my problem with feeling Overwhelmingly Nebulously Bad is I haven't had enough water cause the store has been out of the bottles, but the app says they have them. I guess if they don't I can drive into Terrell.
I know a wheelchair would be a help at this point- I need to ask for a referral to an OT, I think. But then also I need to find a closer second opinion doctor in general. White blood cell count has been high for... I think we can say a full year at this point? That and inflamation markers- I have a feeling my doctor is planning on the rehumatologist just taking care of it. So it'll depend on when I can get an appointment. If the appointment is in September I will wait but if it's in October or further out then I'll look for a doctor more around here and they'll be my second opinion. And then depending on what happens with all that will determine who I ask for an OT referral. Cause my store has motorized carts occasionally but Terrell literally never does cause there's like three and everyone out here is old, so I can't depend on always having access to one. And even with the rollator I can't walk that much without overheating or whatever my body is doing.
I don't know... too many things.