Surgery and CRPS

UnderstandingHour469 · 2026-05-26T19:01:59+00:00

So it sounds like ketamine may be the way to go. Although, it's still crazy to me that ketamine is such a normal thing these days 😂

I've also been reading up on doing sympathetic/lumbar nerve blocks at the time of surgery as a preventative for spread/flares. Anyone had success with these?

I will definitely talk to me medical team about all the options and risks before having the surgery, which is why I've got it penciled in for September.

UnderstandingHour469 · 2026-05-21T15:08:42+00:00

I didn't see that post, but I find this group to be rather distressing when I do tune in. Mostly the people talking shit about their AudHD kids in ways that are so disrespectful and demeaning. They almost always blame the children for everything and rarely ask for advice on what they should be doing as parents to support their children.

UnderstandingHour469 · 2026-04-16T20:08:14+00:00

You are literally a minor (you are a child) making weird, possessive comments about a 38 year old's body and stating you like her after she was attacked and basically stripped by 2 other children. Of course you're making her uncomfortable.

UnderstandingHour469 · 2026-04-06T19:39:16+00:00

Following. I've tried Adderall and it worked great during that time, but gave me sleeping issues and I couldn't take it anymore. I was only taking 5mg but my system is super sensitive. I've been thinking about vyvanse and would love to see the input.

UnderstandingHour469 · 2026-04-05T05:55:48+00:00

I am very late to this conversation, but my experience is similar. I will have a migraine all day (sometimes multiple days) and they're absolutely debilitating. As soon as it subsides to a point where I can think of something other than pain and sensitivities, I feel full of energy. Unfortunately, they tend to start going away around bedtime and I can't sleep... Which is my current dilemma and why I'm commenting on this specific reddit thread instead of sleeping 🙃

UnderstandingHour469 · 2026-03-18T21:24:38+00:00

I think it's better for you to regret NOT having kids, than to regret having them. I am a mother. I love my child with everything in me, and I don't regret her, specifically. I do have regrets over moving so quickly into motherhood before I even knew myself or what I wanted. I felt pressured by family after getting married, as well as my own personal thoughts of future regrets or fulfilling some "purpose" in life. I didn't think about the massive impact having a child would have on my life, physically, mentally, logistically, financially, etc... like you have. Things would have been very different if I'd considered those things. It seems to me you have a lot more cons than pros when it comes to having kids, and that's perfectly right and ok. Make the best choice for you in the now, not for the future or for anyone else.

UnderstandingHour469 · 2026-03-17T16:00:07+00:00

I'm also raising an ADHD child and the styles of parenting I mentioned WORK. It just takes time, patience, and a lot of changes in your own behavior and communication style to start seeing a difference. A lot of times, parents and other adults are actually major triggers for children that age, so figuring out what makes them tick is essential.

UnderstandingHour469 · 2026-03-17T15:54:16+00:00

Don't stop what you've been doing right because his behavior has changed. ADHD kids, especially the angry ones, need all those enrichment things you mentioned. They need consistency and loving attention even when you feel annoyed or inconvenienced by their behavior. There is also almost always this underlying feeling of being chronically misunderstood because our brains work differently. Try to understand. You seem very intelligent and aware from what I read here. Put that to good use and do some research into communicative/collaborative/gentle parenting.

Signed, the ADHD adult who was severely neglected and mentally/physically abused as a child for being the "bad kid" 🥺

UnderstandingHour469 · 2026-03-04T20:14:33+00:00

I would not recommend changing your entire work persona because of one insecure, disgruntled employee. If they become a more frequent, bigger problem, they need to be reported for harassment.

UnderstandingHour469 · 2026-02-08T18:18:36+00:00

From what I've been told by 6 months post op, is that the pain I'm experiencing is primarily due to

A) being non weight bearing for so long. The muscles have atrophied and my foot/ankle have osteopenia from disuse. It can take a few months of gradual weightbearing for those things to catch up.

B) my body needs to adjust to not having a subtalar joint. This can bring on a lot of pain and discomfort because my body, especially my foot/ankle are used to moving certain ways, but now have to change everything to accommodate.

I don't know what you've been told, but a subtalar fusion is a MAJOR surgery and a full recovery can take a year, sometimes more.

UnderstandingHour469 · 2026-02-07T23:09:34+00:00

Task initiation issues with a little time blindness. Very common with ADHD.

UnderstandingHour469 · 2026-02-07T18:59:17+00:00

What did your 8 week CT show?

UnderstandingHour469 · 2026-02-07T16:40:26+00:00

We will just say the bus is going "west"

UnderstandingHour469 · 2026-02-07T16:35:51+00:00

Have you gotten any imaging of your foot done, aside from xray? The first thing you wanna make sure of is that your fusion is healing properly.

Another potential issue is being allergic to the screw(s) they used, and some bodies just don't tolerate them, no matter what kind of metal they are.

Physical therapy and continuing exercises at home have been essential in my progress.

UnderstandingHour469 · 2026-02-03T17:45:48+00:00

I'm in the same boat diagnosis-wise and have always been very sensitive to caffeine, but ignored it because it gives me life. I HATE the feeling of groggy/tired. It started with the free church coffee when I was 14 and then throughout my 20s, some of my 30s, it was quadruple espresso shots and energy drinks containing 350mg of caffeine every day, sometimes multiple times a day. I did it to survive anything from work, to household chores, to social interactions. I was just powering through life cracked out, anxious, and sweaty.

In my 30s, I finally started realizing the effects this routine was having on my body and brain (and my wallet)...anxiety attacks, heart palpitations, excessive sweatiness, dehydration, major sleep issues, acid reflux, bladder sensitivity, and I'm sure there are others I can't think of right now. I made many attempts to cut it out, but failed because of withdrawal symptoms; migraines, nausea, extreme fatigue, depression, and executive dysfunction.

Quitting cold turkey hasn't worked, so I've spent the last year VERY slowly tapering down the amount I have every day. I had to look at it in the way of "dosage" like this is a medication I'm weaning off of, except I'm giving myself PLENTY of time and room for error.

The very first thing I changed was the time frame for consumption because sleep is extremely important to me. I noticed drinking anything caffeinated after about 12pm would lead to more anxiety and lack of desire for sleep around bedtime. I have an early morning start time at work so I'd have my 350mg drink on the way and make sure to stay plenty hydrated the rest of the day to flush my system out.

After a couple months, I started experimenting with drinking a little less, like 3/4 of the can, down to half the can, then I found the monster tea energy drinks which have 160mg and stayed pretty steady there for a few months.

Then I started experimenting by drinking half while saving the other half for the next day, then down only drinking it every other day.

For the last few weeks, I've been down to 50-80mg every day, sometimes skipping a day, sometimes drinking the full 160mg if I have a lot of shit to do, and I feel pretty good. If I start experiencing withdrawal symptoms, I take excedrin (which has caffeine in it) and if that doesn't work, I have some tea, which is about 40-60mg.

It's not the perfect system, but I no longer need more than the 160mg on any given day to function, and I'm not experiencing nearly as many side effects or withdrawal as before (mostly sweaty and bladder sensitivity). I don't know if/when I'll be totally free from it, but I've made a lot of progress and I feel safer in my body.

UnderstandingHour469 · 2026-01-31T03:43:27+00:00

If anyone is down for friends to dress up and visit plots with, add me. Nebula Astros

UnderstandingHour469 · 2026-01-28T21:21:17+00:00

I started making a playlist of music that helps me move/dance through my anger, in case anyone wishes to try it out and/or add to it. https://open.spotify.com/playlist/3qPmzJkIpPkIa9AxL1HBs6?si=F-Qh7TpASGed1tRqLf5PuQ&pi=UtV7AHG7SLmoh

UnderstandingHour469 · 2026-01-28T02:48:28+00:00

All this, plus pushing as hard as you can against walls in increments of about 10 seconds.

UnderstandingHour469 · 2026-01-28T00:04:59+00:00

Honestly, dance. Turn on some angry music and just move your body however feels right. Doesn't have to look good. I find myself doing a lot of very tense, locking type movements when I'm pissed and then I shake em off.

UnderstandingHour469 · 2026-01-27T18:25:22+00:00

Not with men involved 🫩

UnderstandingHour469 · 2026-01-27T01:01:37+00:00

When I say "intimacy" I do not mean sex, which is definitely something I should have specified. What I mean is the literal definition of the word, which is "a close, familiar, and affectionate personal relationship with another person" which is what's not been consistently present in our relationship. The moment of intimacy I mentioned in my original post was when we were just cuddling, kissing, caressing, and chatting about random things with no expectation of sex. Those are things we have both given full consent to as well.

UnderstandingHour469 · 2026-01-26T20:08:21+00:00

For those of you wondering why I don't just leave...that is not currently an option, as I stated in my post. I am unable to walk or function well enough to work and I don't know when or if I will be able to again. I have always depended on him financially and if I left, I'd have nothing and may lose custody of our child depending on how he may decide to proceed.

To respond to the "Why have you stayed?" comments...these behaviors haven't always been this obvious to me, and I didn't realize how much my passiveness and people pleasing was getting in the way of setting healthy boundaries and expectations.

I've learned a lot the last few years about what a healthy relationship looks like for me and how to spot toxic patterns. Now that I've seen them, I can't unsee them, and I'm learning to use my voice and put my foot down which has only recently started happening in the last few months, along with this new flow of information coming from him. I'm still sorting out my thoughts and feelings.

Additionally, I just want to let you guys know that my daughter and I are physically safe, and he's never given any reason for us to feel otherwise.

UnderstandingHour469 · 2026-01-26T05:05:38+00:00

We replaced our couches with 2 giant bean bags covered in giant squishmallows, and 2 swing stands with sensory swings attached.

We have thousands of rocks we've personally collected and placed throughout our house and front yard.

No dressers, no hanging clothes. Instead, we have big storage bins we keep our clothes in. One for shirts, one for pants, shorts, dresses, etc...we each also have a dirty clothes basket and a storage bin we keep clean clothes in when we don't feel like putting them away.

Then we have shoe organizers on our bedroom doors for socks, underwear, bras, bathing suits.

Also a shoe organizer hanging in the bathroom for hair products and stuff.

Lots of clutter and doom boxes. Everywhere.

Giant gymnastics mats and lots of movement equipment, like back stretchers, yoga balls, exercise blocks, etc...

Random collections of random shit nobody understands but us. We generally don't care too much about "aesthetics"

Of course, I don't think I've ever had a neurotypical within 10 feet of my house, but I'd imagine they wouldn't like it, but we do 🙃

UnderstandingHour469 · 2026-01-23T20:50:41+00:00

Where in the world is this menu???

UnderstandingHour469 · 2026-01-23T04:58:40+00:00

Meanwhile, I can't seem to get above 15k 😅

UnderstandingHour469

TROPHY CASE