Went to pick up the meds last night and the pharmacist comes up, whispering excitedly "They just came in last night - 3 months worth!!" as she slides my estrogen patches across the counter. She was excited as I was.
Just something on the lighter side that I found amusing. I told her I should go play the lottery.
I'm having a bit of a moment after my last round of Dr's visits. I waited 4 months to get into a Neuro Psych appt to discuss testing for AuADHD. The provider (30 minutes late) connects and says: "Ok this visit is for memory loss concerns?" Me: Um... no? "Well it says brain fog." Ah. Yeah, not the same 'concern', at least to me. (Thanks for half listening, PCP.)
She starts off almost antagonistic about 'well why do you think it's a concern'? After I finally get my bearings I string together enough words that she finally lightens up. Long story short, she agrees to send me for testing and also recommends a sleep study. (I don't sleep for crap, many Dr's have mentioned it, so why not.)
Was able to get in to the Sleep dr a few days later (today). He leads with "ok so this is for sleep walking?" Me: ((WTF??)) No. He takes a few minutes to 'look over things' and comes up with: "Well you probably need CBT-i because you're healthy. It's probably psychological."
Sir... I wake up at 3am every day emanating the heat of a thousand suns. I haven't been able to lay on my left shoulder for 3 years. I can't breathe through my nose when I'm horizontal. I don't wake up refreshed and I can't speak to another human for at least 2 hours after I wake up, for their own safety.
Now he dials in the antagonistic tone "Well do you nap?" No. "Well see then you're fine because you're not sleepy enough to nap." Again.. I work a full time job and run a small business on nights and weekends. There is no TIME to nap even if I wanted to. He also didn't understand what HRT was for, I had to explain it.
Eventually he relents and agrees to send me for some form of testing... there might be an opening in about 3 months.... then I'll get a follow up from his team in 6.
Promptly after I was done stewing about that I get a letter from Neuro. "Oh hey sorry we don't do autism. Here's a different contact that might be able to point you in the right direction. Good luck." This is a major hospital system not some small local network. I can't even message her in the portal.
So, I'm feeling a bit surly and at a loss. Some things I'm trying to get checked off just so more Dr's can't hide behind the "Well have you...." excuses. Like it's not even about the result at this point it's about the diagnosis by exclusion.
I have noticed in a lot of new patient appointments the past year or so the providers start in with the Dr. Jekyll and Mr. Hyde routine. They want to know what you think is wrong then they get shitty like you're making it up. Dude, YOU asked ME and didn't offer up any thoughts. I'm not the one that went to school for this.
I want to be able to move my recovering frozen shoulder without pain, not end up on fire every night at 3am and actually remember why I walked into the room. Is that too much to ask?
It's officially been a year since my diagnosis and hydrodialation. (48F) I ended up with roughly 5 months of PT and have been going to the gym 2x a week for most of the time. (Shoulder started freezing about 5 months before diagnosis/treatment.)
Current status - I would say I've been stuck at 98% since about December. The front and forwards/up range of motion is pretty much back to normal. Side/back rotation still suffers a good bit. The part I don't like - I feel EVERY movement. The slight muscle tension/light pain hasn't really resolved despite me getting stronger and better range. It can still make sleeping hard. (I have ALL the pillows.) I'm also hypermobile so muscle guarding is an overall problem for me.
Strength and stability has improved with the gym time. I can do dead hangs for a bit and recently I started to do the assisted pull ups which I was surprised weren't an issue.
I'm definitely open to suggestions on how to build that behind my back range of motion back up. I did just pick up a workout mace to try and get the rotations going better but haven't gotten into much yet.
I met my parents for Father's Day lunch. I have been growing my hair out for the past year or so - I've had it short since about 8th grade when my mother forced me to get a pixie - a messed up story of its own. (I'm almost 48 now).
Before she even sits down, my mother comments on how my hair is long. (Not a compliment, an observation.) I say 'yes.' She goes on about how she likes it better short. My husband chimes in and says he likes it. Her response is "Men always say that about long hair." Then she proceeds to go on about how nice it looks SHORT. My dad just stares off into space, as he does.
I bit my tongue, mostly because I couldn't decide which wisecrack to go with and then the moment passed. "If you can't say anything nice..." was my first thought but there were some meaner options.
Later on I mentioned that I booked a beach vacation (that I've been wanting to do for ages.) Her response was: You know how pasty white you are, right?
It's just tiring even though I'm used to it and basically grey rock as much as possible. Even though I know she's full of BS, it still drains me for a day or two after these encounters.
For the first time in my life I booked a fancy all inclusive resort vacation. I've always wanted to, but always had more "important" things going on. It will be our 15th anniversary treat. I haven't had a vacation in 9 years and I've been working 2 jobs that entire time.
I think about my mother and how she complains because my father doesn't 'do' special occasions (and that often means I'm somehow expected to for her.) Overall I consider her pretty progressive but there's a lot of times where the cop out is "oh I would really like that but your dad doesn't."
My first marriage was right out of college, I was sold the 'white picket fence' lifestyle that you were SUPPOSED to do. I lived that life for about 10 years "Ew, mushrooms!" from the husband meant it was easier for me not to have mushrooms, which I enjoy. When I got divorced, the first thing I did was load up my fridge with all the stuff I liked, and hadn't 'been allowed' to have for years. My current husband may not enjoy the same foods as me but I don't force him to, and he doesn't begrudge me having it in the same room as him and whine like a child.
I have always been frugal and mindful of my money but I'm getting to the point in life where if I really want it, I'm going to get it/do it/have it rather than wringing my hands and coming up with 20 reasons why I should wait for a better time.
At this point I'm not sure if it's a Generational thing, a perimenopause thing or just a being tired of putting myself on a backburner thing. (All of the above?) I worry that I'm spoiling myself but then I decide I don't care. 😄
As it says, I haven't had a proper vacation in years and haven't even left the states since 2011. I'm looking to book something nice but low key for our 15th anniversary (yeah last trip was our honeymoon). I am in analysis paralysis at this point.
Locations and/or best booking sites/way to book would be great. I have minimum American Airline travel points (maybe a ticket worth) and some Marriott perks but not enough to do much.
Current idea:
Concerns:
Just got back from a business trip. Thankfully the series of flights weren't very long but between the seats being harshly upright and literally no room to wiggle or shift, my tailbone and back was in agony the whole time.
I typically work from home so I can get up and move around as much as I need to. I didn't realize how much I have been taking it for granted.
I just got back from a work trip that involved a special team of subject matter experts going over high value items. I was one of the team though one of the few people that were not some form of supervisor/leadership. On the trip I learned that my boss (who is great) is retiring at the end of the year. I knew it was coming at some point but I didn't realize it was this close.
Earlier in the year at one of my progress reviews he flat out told me I should try for his job. I was honestly stunned. I've only been with this department for 3 years and there are several older men that would likely be competition for this job. I'll be 48 soon and am the only female in our dept. I'm also the only Architect in a group full of/run by Engineers which kind of makes me a jack of all trades in a room full of specialists. (This was a big reason he thought I'd be a good fit.)
I was a supervisor of a different type of department prior to this job and it was a horrible experience. I swore I'd never be a supervisor again. Between unnoticed perimenopause, chronic pain, years of toxic work environments and full on burn out, I have been struggling to build myself back over the past few years. The brain fog and debilitating pain before I got on HRT was real. I also own/run a small business that's not doing great right now. We've pledged to get it to our 10 year anniv next Spring and then possibly close. Basically, my mental load is at 110%. I've worked 6+ days a week for 10 years.
Back to the trip - we had a happy hour and the leaders of the group were talking about retirements, going for higher jobs, etc. I made an offhand comment about trying for my boss's job when it comes up. One of the other higher supervisors immediately offered to write me a letter of recommendation if I wanted it. (Was not fishing for that at all and was caught by surprise at the offer.)
In my mind, if I want to position myself for even a remote chance at that job, I have to start now. (Which I'm already kind of doing by being on this high profile team.) I'd rather apply and get told no than end up at the mercy of some brodude cause I didn't try at all. (Which is a distinct possibility.)
So here's the TLDR: I don't really want to be a leader again, but I don't want to be at the mercy of an asshat. This was just supposed to be a stable job, not a career, I had given up on that a long time ago. I never even planned to be here this long but Covid screwed up my small business trajectory. I don't have any friends or family that are in a technical field like I am to bounce things off of. I have a nasty trait of ending up in charge when I get into something new and I consciously try not to do that anymore. My husband is supportive if I want to go for it.
I've been finally having success with some lifestyle changes on the pain, brain fog, etc and am getting a little bit of my 'snap' back. Also - having no 'effs to give in Peri is actually working in my favor... I tried being blunt to get people to leave me alone and they just saw it as a 'straight shooter with upper management potential'.
This is probably a bit rambly because I was up at 3am to catch my flight home after a long week and it's about 6:30pm now.
In truth its day 12 but it's likely not going to change in the next 2 days. Overall, this was a fail for me. Context: 47, perimenopause, hypermobile, fibromyalgia, CFS, suspected MCAS.
Pros: It knocked me out within about 15 minutes of taking. But getting to sleep wasn't my problem.
Cons:
Mouth soreness. Not horrible but I had to make sure I had enough saliva and rotate the side of my mouth each night. Sore spot typically clears up after 24 hours. Temporary tongue numbness is annoying but tolerable.
Sleep: No change. I've been wearing my sleep tracker religiously for months. The tonmya sleep showed up no different than without it. I still woke up the same amount and usual pain. Maybe got to sleep a bit quicker but not significantly. Dreams have been weirder but that doesn’t bother me.
Pain: No noticeable difference. Still tossing and turning due to sore spots.
Morning grogginess. The first few days it was really bad. Less noticeable now but no brain or energy improvement.
Digestion: Can't 100% pin it on the tonmya but my gut has been uncomfortably sluggish this whole time. I also feel like it might have messed with my pelvic floor muscles a bit but again that's hard to quantify.
I took the full 2 pill dose last night. 0 difference aside from a quicker knockout.
Disappointed it wasn't magic but glad I tried it so I don't have to wonder or waste a bunch of money. I can't afford to have more brain fog so that limits a lot of my options.
I got a 14 day supply of Tonmya from my new PCP to try. Has anyone done the 14 day trial? And were there any issues when you stopped?
I'm fairly sure my insurance won't cover it but I did want to at least give it a shot but it's so new I wasn't sure if there were any withdrawal issues that people have had?
Long time lurker, I think first time poster. Came to the realization about 2 years ago that I'm hypermobile (totally runs through my dad's side in retrospect). Haven't had a lot of luck with Dr's in that realm. Rheumatologist told me I had Fibro and shrugged me off. PCP's and Ortho basically did the same. Finally started with a new DO yesterday that also does the OMT manipulations.
As we were getting up to speed I mentioned I was hypermobile. He pulls his thumb to his wrist: can you do this? I do it back. He's like: Yep, that's all I need to know, you're definitely hypermobile and I am too. He noticed immediately that all my muscles were locked and guarding and was able to release a lot of them before actually putting my ribs, hips and neck back in place.
He also mentioned EDS, which I couldn't get any other Dr to even entertain, and knew quite a bit about that. He's sending me for chest xrays to make sure my heart valves aren't goofy from the lax connective tissue. Genetic testing may now be in my future, but we'll see how things go. He also gave me a sample of Tonmya to try for the fibro type pain. I was shocked he knew about it. He was shocked I knew about it.
After being dismissed for the past 10 years I am cautiously optimistic. Now if only my ribs would stay put!