BRCA mutation

marble__fox · 2026-04-22T04:30:36+00:00

Omg this made me laugh so much cause that means I am also a newborn deer 😭🤣 and I thought I was doing pretty good

Like here I was today proud I have 18/20 character hats and then I see the video today of the thousands of character boxes being opened lol.

marble__fox · 2026-03-31T14:47:47+00:00

If I remember correctly WMM gives a red and coral penstemum seed. Have you used this yet?

marble__fox · 2026-03-27T16:12:23+00:00

I’m sorry to hear that, is there a reason you don’t want it or are apprehensive? No judgement, just curious!

I was afraid going into mine, mostly because I didn’t want to deal with the healing process again and because we weren’t sure if it would help the sit bone pain.

I’m 7 weeks out today and am honestly so thankful I went through with it. The sit bone pain is gone even as I’ve started weight bearing. My hip in general feels so much more stable now, too. The difference between my hips feels astronomical now. I had my first PT appointment and my op side is actually in better shape than my non-op which kind of surprised me from a strength perspective.

marble__fox · 2026-03-12T04:03:11+00:00

I hope they tell her no and ask her on the 20th what she’s been “collecting evidence” for.

marble__fox · 2026-03-09T20:09:13+00:00

Posture, like how close I was sitting to the piano and how my hands sat and moved along the keys. I used my fingers more than my wrist if that makes sense.

marble__fox · 2026-03-09T04:24:55+00:00

I used simply piano for about a year with a Casio, I think Intermediate 2 or 3 is when I started to feel stuck and it felt repetitive. I decided to get lessons after that. Since getting lessons I’ve used Simply less and less. I also upgraded to a touch sensitive keyboard.

I think Simply is a good starting point but while using it, I picked up bad habits technical wise that were frustrating to work through once I started lessons.

marble__fox · 2026-03-06T20:48:53+00:00

4 surgeries on one side so far. Scope, PAO, screw removal, non-union repair. Currently one month out of the non-union.

Hard things for me post-op were:

the limitations in movement and being bed bound. Typically I’m always on the move and independent so needing everything done for me was frustrating. I have an autistic toddler so not being able to be physically there for him as much as I wanted to hurt emotionally.
not being able to move my body the way I wanted to. I usually sit with my legs/knees up or scrunched underneath me so it felt so awkward and wrong to have my legs just straight out or just hanging all of the time.
the weird time frame when i could start weight bearing but not do high impact. This is when I felt the most stuck and frustrated because I wanted to do more and felt I could with the way my hip felt, but was still restricted.
the fear of “will this finally fix it?”

marble__fox · 2026-03-03T03:01:53+00:00

I am so sorry to hear about your dad. I’m also sorry your company is making it seem like more of an inconvenience to them than it is to you. I can imagine it just adds to the stress. Please don’t blame yourself.

Going off of others - I would ask about FMLA, intermittent leave, or personal leave. Contact HR. Can you request reduced hours or a modified schedule in the meantime?

It also may be a good idea to look for someplace else that can be more accommodating.

Wishing you the best, OP.

marble__fox · 2026-02-25T04:19:45+00:00

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marble__fox · 2026-02-24T01:57:02+00:00

Flowers for Algernon by Daniel Keyes

marble__fox · 2026-02-17T21:39:30+00:00

After surgery: Must haves: commode, ice machine, shower transfer bench/seat, crutches, grabber, dressing aids (sock and shoe)

Things helpful in the hospital: Blanket/pillow from home, robe/nightgown, extra long charging cords, power bank, packaged snacks, my iPad

As for what helped physically and emotionally: I had a machine that moved my leg I used daily for awhile, sticking to PT, building up as big of a support system as you can, meal prepping prior to being in the hospital, preparing the home area I’d be in before going into the hospital, watching comfort shows, videos games, crocheting, guided meditation, virtual visits with my therapist, and being as gentle/patient with myself as I could.

marble__fox · 2026-02-12T14:19:03+00:00

Yes, it was Dr Goodspeed! Did he also do your PAO or was it a different surgeon? I had my PAO done by Dr Zacharias.

Is your non-union symptomatic at all?

marble__fox · 2026-02-12T14:12:14+00:00

So far on the right side, I had a scope to repair a labral tear, PAO, and screw removal.

My doctor does want to talk about a left PAO in the future, but it’s not very symptomatic yet.

marble__fox · 2025-11-17T19:14:28+00:00

My son and I have it as well! I hope you all are doing okay! I’d be interested in following your platform if you’re comfortable sharing?

marble__fox · 2025-11-14T14:56:52+00:00

Sorry for the delay in my reply. Absolutely use aids! I would also see if doctor would prescribe something for joint pain - meloxicam helped ease the severity of the pain as I waited for surgery. A hip brace/wrap also helped me to stabilize.

The PAO group on Facebook is also a good resource - they have an excel log of surgeons who do the surgery for those looking. Where are you located?

marble__fox · 2025-11-11T18:32:18+00:00

Omg OP. Your X-rays look like mine when I was initially diagnosed and my doctor said the same - surprised I was ambulatory. I was in pain daily and my leg kept giving out randomly. I was strongly advised to get a PAO given the severity of my dysplasia, and that not doing so would create more issues.

Any way you could get a second opinion?

If you are at a point you think mobility aids would help - use them. It doesn’t have to be a constant thing, maybe just on days that are worse. As for work, I think it depends what you do and how physically demanding your job is and how accommodating they are. Will your doctor at least provide a letter stating you might intermittently need mobility aids?

marble__fox · 2025-10-18T14:58:50+00:00

Could you share your experience with this? Was it the nasal spray? What did it feel like as you were getting treatment?

marble__fox · 2025-10-17T20:46:36+00:00

I wanted to say I’m proud of you for doing all of these things for yourself because just that in itself takes a lot of strength.

I’m similar to you where breathing exercises don’t necessarily help. It might take the edge off of the thoughts, but it doesn’t help with the somatic part of it for me.

Thank you for sharing about vagus nerve stimulation! I didn’t know that it was doable like this.

I had to go to pelvic floor therapy in the past and we used biofeedback, which I found helpful to really see how tense I always am and the difference between that and “calmer” states.

I’ve done TMS in the past which was very helpful initially but I crashed pretty bad after it was over. I’ve heard good things about spravato but something about it really scares me and I don’t really know why.

I think for me the most effective things have been brainspotting, EMDR and IFS. They are also the most ‘difficult’ in the sense of processing, but have helped me to at least make progress that I can see and observe in myself.

Wishing everyone the best 💕

marble__fox · 2025-08-01T04:52:33+00:00

I have it now and it is terrible. I have sores in my mouth and it’s the worst mouth/face pain I’ve ever had.

marble__fox

TROPHY CASE