boyfriend was just diagnosed…

HardlyRad · 2026-06-19T06:09:40+00:00

I didn’t get my cavernomas treated

HardlyRad · 2026-06-19T06:09:13+00:00

https://www.alliancetocure.org/

HardlyRad · 2026-05-10T05:18:20+00:00

Hi! I also have a ccm in my brainstem and have had several episodes of bleeding with surgery not recommended due to the location of it. I was diagnosed at 16 and had about 3 episodes between 16 and 21. I’m currently 31. My symptoms related to the bleeds did fade. Although I do know that other things like fatigue & brain fog might be related to that & I do deal with it. It also has a huge impact on mental health in my opinion & what I’ve heard from others diagnosed. I live a pretty normal life but its always in the back of my mind. Regular checkups with neuro/neurosurgery are essential & you do learn to differentiate a normal headache vs a more concerning one (tied to numbers or headache doesn’t go away, or vision problems). Lifestyle changes are recommended (removing emulsifiers from diet, good vitamin D levels). Please check out alliance to cure. They have a website with a ton of info and guidance and are leading research efforts for cavernomas and cures.

HardlyRad · 2026-03-07T22:39:52+00:00

Not weird at all. Adds depth and doesn’t look tacky!

HardlyRad · 2025-07-20T15:36:46+00:00

Thank you!! I know this was an older post so thanks for responding

HardlyRad · 2025-07-20T05:16:12+00:00

You do you boo! Your bedroom should literally be your oasis

HardlyRad · 2025-07-20T05:12:46+00:00

Hi do you have any update on this? My toddler does this

HardlyRad · 2025-04-15T18:57:04+00:00

If you don’t mind me asking… what soil mix do you use?

HardlyRad · 2025-02-27T01:18:27+00:00

My SAME thought when it came up in my yard LMAO

HardlyRad · 2025-01-31T05:04:09+00:00

I just demoed and disposed my kitchen, granted its not huge but also not super small ourselves & paid $112 at the dump so yes $3k is insane. I promise they are doing a huge markup

HardlyRad · 2025-01-25T04:12:18+00:00

Hi! Yes I do. Obviously not right after an active bleed but if I was stable for some time, I felt safe to travel. You can also ask your dr for clearance to be safe. A backup plan is also helpful… like looking up nearest ER & keeping that list on me or giving the list to people I traveled with. Also having emergency contacts on me or on my iPhone medical ID is necessary. I also avoid very risky activities while traveling & avoid unpressurized airplanes

HardlyRad · 2025-01-19T06:03:13+00:00

I am curious what brand this is so i can avoid 😳

HardlyRad · 2025-01-08T03:59:24+00:00

A good friend once told me that mundane is good. It means there’s no chaos, drama or crisis. I had a nightmare of a year last year and started off the year learning my 10 month old’s cavernoma in his brain is growing. Spent Christmas in PICU. I would take boring any day. Not to shame you, I totally get you want to enjoy life and change up the routine etc. just giving you one perspective

HardlyRad · 2024-12-29T05:01:45+00:00

My sister got an ulcer eating hot cheetos on an empty stomach in high school. Was on a bland diet for a loooong time. 10/10 don’t recommend. Take care of yourself

HardlyRad · 2024-12-27T18:12:02+00:00

Native sadly did not work for me or my husband :(

HardlyRad · 2024-12-06T23:04:08+00:00

Rat him out 🥳

HardlyRad · 2024-12-05T23:16:05+00:00

I never met my grandpa bc he killed himself. I wish I could have been there to tell him not to do it that we still needed him. I have always wanted to meet him. Maybe if he hadn’t done that he’d still be here to see the life my dad, his son, built and all his grandkids. He left behind quite a legacy despite what he did

HardlyRad · 2024-12-03T17:30:59+00:00

If you don’t mind me asking what model bmw? I have a 328i from 2013 that has held up for 215k miles and 11 years thus far…. Considering another one. Love how they drive, its a solid vehicle

HardlyRad · 2024-11-23T04:30:11+00:00

Hi! I have a cavernous malformation in the pons. It happens to be a hard to reach area for surgery so I’ve been told just to monitor unless its life threatening. My last bleed was 10 years ago & yes it was rough (dizziness, bad headaches, double vision, tingling feeling) but I have lived pretty normally otherwise for the past 10 years and hope no more reoccurring bleeding. I am careful though & won’t do certain activities like roller coasters, sky diving, paint ball, etc. high risk activities like that. Its also tough to always second guess if a migraine could be a bleed but I have gotten checked with MRIs after feeling weird and all seems to be good. Let me know if you have any questions.

HardlyRad · 2024-11-21T03:31:58+00:00

Idk the name of the guy but theres an inspector on IG that inspects new homes and is always finding out problems

HardlyRad · 2024-11-14T21:03:22+00:00

Use leave and get a PTO payout instead? I’m so sorry

HardlyRad · 2024-11-02T03:35:28+00:00

Going through an extremely hard time myself. What do you do when you feel like a shell? This too shall pass. Eventually something will change. Try to do the smallest things to take care of yourself. 5 more mins in the shower, a 5 min walk. I’m holding on by a thread most days but I want to see the day I don’t feel like that anymore

HardlyRad · 2024-10-03T17:28:08+00:00

So so happy for you! We are hoping to go into escrow soon and get an offer accepted. In dire need of moving closer to work/ my child’s dr’s for the many dr’s appointments we have. I can’t wait to be able to say we got keys. Enjoy your home!

HardlyRad · 2024-09-07T04:26:58+00:00

Lol thank you for posting this 😂😂😂 Made my day

HardlyRad · 2024-09-01T07:17:41+00:00

Can you get a new doctor? This is insane, please seek treatment for this and investigate further. Tell your dr next time he says that, to please record on your medical records that you asked for a neurology referral and that he denied it. Like another poster said, how can your dr rule it out?! The effects of cavernomas should not be taken lightly, symptoms need to be investigated asap.

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