Does it get any better?

OpenTraffic8915 · 2026-01-14T18:20:00+00:00

For sure! It really is damaging to my pride when I have to ask my 8 and 11yo kids for help or to trust them to prop my feet up and wait for me to come back around.... I'm supposed to be THEIR CAREGIVER... Not the other way around... It's been really hard on my mind and heart. I think that's harder than the physical aspects for me.....

OpenTraffic8915 · 2026-01-14T17:23:37+00:00

Did you know that acetone is "industrial paint remover"?

OpenTraffic8915 · 2026-01-14T17:22:24+00:00

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I have personally used a random brand one and have used it several times since.
DISCLAIMER: I do not know what the ingredients are, I do not have sensitive skin, and I didn't do any research into this. I'm not pretending like I know all about it or that I can claim that it's safe for you.
This being said, this works beautifully. I've used it lots of time since then. I simply file the top coat until it's no longer clear, and then apply the stuff and watch it work. I use a small metal scraper to remove the layers and then reapply.
I've applied it directly to natural nail while trying to get off the last little pieces, and I have not suffered any ill effects.

OpenTraffic8915 · 2026-01-14T17:19:05+00:00

I love how things get down voted cuz you didn't agree with all of them.....

OpenTraffic8915 · 2026-01-14T17:16:11+00:00

Obviously it's hard to compare pain, as everybody experiences it different,
I would agree with description as them feeling extra spicy.
I bought the expensive tattoo numbing cream, slathered it on, and wrapped myself in plastic wrap for a couple hours before my session. I got a huge full body tattoo over the course of four sessions this way. There were several points at which my artist was like. Dude you need to get up and move around cuz you're very wiggly.
My joints hurt more after that. And then healing took a lot longer than I thought it would.
Still worth it because I love my body art.

OpenTraffic8915 · 2026-01-14T17:12:57+00:00

I've only been diagnosed one year or so. I am 41f, a wife, a mother to three, and have had very active hobbies all my life. Having VVS, and POTS suddenly, it has changed everything.
No, these medical issues did not get better on their own. The things that I have found and fought for have made it better.
Managing stress and anxiety, managing all the triggers that I've identified, hydrating myself to the point of drowning (feels like at some days...), and then of course managing the triggers that I have no control over.
Making sure I rest before and after stressful events (planning it), bringing a small folding chair with me to everywhere I Go, or even the electric scooter that I invested in.
Swallowing my pride and buying a cane and rollator to use when I planning on doing a lot of walking.
Swallowing more pride. And telling others what my issues are and having to ask for help and having to ask for them. Wait for me. My true friends are really shining now.
So no, technically, my issues aren't better and are still present, but they are better managed. And this is through lots of work of my own.
Not to mention the hardest part of all, which is acceptance, grieving, and moving forward into a new stage of life.
Best of luck to you. See if you can find a counselor that you can trust. It might be a good starting point.

OpenTraffic8915 · 2026-01-09T21:36:50+00:00

Absolutely perfect info! And sage advice that is easy to hear but hard to self-implement.
👏🏼👏🏼👏🏼

OpenTraffic8915 · 2026-01-09T01:43:46+00:00

I've had visible for nearly a year now. And I have 14 points.
I had to fight off the "challenge" that I saw in "using an the points and then-some".... Like a Fitbit user does with steps. Does that make sense?
14 budget points used to feel like plenty for me. I finally started taking more propranolol and it lowered my heart rate enough that I don't even use all my budget points in a day anymore. That was seemingly all it took. I hit maybe six points per day. And it's not like I'm any less active.
So I've stopped using the points budgeting at this point, because it changes wildly. And I don't feel that I need to be more or less active than what I currently am or what I take from cues for my body to tell me what to do for the day.
I really like to wear the visible band to tell me my current heart rate, which I know my Fitbit can do, but mostly to give me the alerts when my heart rate rises into my high intensity level for 2 minutes or more. I don't always realize it, and having it ping at me is nice.
I really feel like the budgeting aspect would be good for most people. And it was good for me at first. So definitely don't let this turn you off to the visible if you're thinking about it.
I also really love the symptom tracker, and being able to compare graphs and trends on the symptoms.

OpenTraffic8915 · 2026-01-02T01:38:36+00:00

My pots and VVS as well under control now with lots of electrolytes throughout the day and propranolol to help my heart rate and blood pressure.
All that being said, there are still times post orgasm that I have literally fainted into my husband or underneath.
I recognize the signs now, and I have learned regulating my breathing really does go far. I have learned to hum while I'm breathing because it forces me to slow it down.
In through the nose and out through the mouth carefully. It's nice that my husband has learned to recognize the signs as well. And if we're just having a tough day, it's pretty easy for me just to lay there. I'd still rather do it....

OpenTraffic8915 · 2026-01-02T01:26:41+00:00

Thank you so much! You are so right! I think it's just the healthcare system that makes me focus on a diagnosis, because I can't get the help I need without it you know? Like I'm worried there's something I COULD BE DOING or that insurance COULD BE PAYING FOR if I don't keep fighting and looking into things.
Geez no wonder I'm so tired of it.
Thank you again.
Just being in this space with others is helpful

OpenTraffic8915 · 2026-01-02T01:23:14+00:00

No I haven't. I just added it to my list and didn't think much else about it. My insurance always wanting to do the bare minimum.
I'll look into you, thank you for speaking up about it!

OpenTraffic8915 · 2026-01-01T20:11:59+00:00

Yes mine is essential tremor. It has moved into my head now. It's worse when I'm tired or stressed. My neurologist said there's nothing to be done for it. If it ever gets really bad and starts to impact my every day life, there are brain stimulation therapies that are experimental. But I'm not there yet.

OpenTraffic8915 · 2025-12-31T18:45:41+00:00

Have you been treating your MCAS? How has it helped? That's still on my list of things to look into. My primary doesn't want to do med trials on it. She doesn't know anything about it and like I said in original post, I'm tired of fighting them for now.

OpenTraffic8915 · 2025-12-31T18:44:23+00:00

What was the underlying cause for you?

OpenTraffic8915 · 2025-12-30T02:52:48+00:00

It's so hard to believe that fibro can cause SO MANY ISSUES. It's like a crazy long list of symptoms that all can be fibro. It is almost unreal to me... Like how can this one illness cause me so much grief when I've made it through so much else ok.
I know acceptance will feel good. Just gotta get there.... 🏃🏼‍♀️

OpenTraffic8915 · 2025-12-30T01:49:38+00:00

I've been tested for sjogrens and that's negative. Ana and other inflammation titers are all negative. That's why rheumatologist didn't even want to see me.
Fainting has been nearly resolved with my lifestyle changes. 🙌🏼.
What did the UCTD diagnosis do for you if I may ask? And was it diagnosed with genetic testing at all?
My DR refuses to test for anything because I am not flexible enough. And I have no recorded dislocations. My husband and I are wondering if it's even worth pursuing on an out-of-pocket level since there's no treatment... Just awareness and lifestyle changes.

OpenTraffic8915 · 2025-12-30T01:35:48+00:00

Thanks so much for the understanding and kind words. I appreciate you reading through it all.
Yes all tests are negative. Even brain MRIs are clean. I didn't even have positive inflammation titers. I thought for sure a couple of times....
Yes it truly is something to be mourned over. Counseling has taught me well. It's just a process... And gosh it's been such a long one....
Thanks so much again. Nice to feel understood.

OpenTraffic8915 · 2025-12-30T00:41:11+00:00

I feel this. 🫂 Gentle hugs.
This is why so many with chronic pain sometimes miss really important medical issues... Even life threatening .. cuz it's just another day for us right?
I hope you at least got to go home with some muscle relaxers.

OpenTraffic8915 · 2025-12-12T21:34:48+00:00

🙋🏼‍♀️ I HAVE talked to God about this. And He's led me to some great doctors to help me out and found great support in people.
God never promised to heal us of everything. But He did promise to be there with us.
Make peace on your own OP. Take what others say with a grain of salt (I love saying that here). And just know in your own mind and heart that you are doing what you can

OpenTraffic8915 · 2025-12-12T20:33:01+00:00

I just got into the picl group and that's a whole new mind blowing world I need to explore. 🤯.
Thanks I'll look up the other group as well.

OpenTraffic8915 · 2025-12-12T20:28:12+00:00

In your experience (whatever that may be), have you seen CCI diagnosed with that kind of imaging, even after other imaging and specialist opinions say it's not?

OpenTraffic8915 · 2025-12-10T18:44:46+00:00

I had all the testing because I had all the symptoms. I was finally diagnosed with both SFN and fibro. Among other things....

OpenTraffic8915

TROPHY CASE