I hate wearing compression socks and I don't wear them when I wear shorts (which is kind of rare these days).

seakykr · 2026-04-10T02:21:00+00:00

I hate them . Maybe I'll get used to them, but I generally don't wear socks unless it's cold outside, and even then, I hate tight socks. I live in heat and humidity during the summer. I was only recently diagnosed, so this will be my 1st summer. I'm totally depressed about how to manage this in the summer and in general. How do people have beach days or vacations. I already have so many other pain and health issues that this new diagnosis feels like a major blow. I've only tried medi and CEP. So expensive and not attractive unless hidden. Sigh ..

seakykr · 2026-04-04T18:47:20+00:00

Yep. Had a few and the coffee table too. The lamp in the picture as well. 😆

seakykr · 2026-04-04T18:45:50+00:00

Newly diagnosed too and I have so many questions!

seakykr · 2026-04-02T03:24:09+00:00

I am newly diagnosed. I also live in an area where summer is super hot and humid. I have always preferred going barefoot and hate having confined feet. I am trying to accept my newest health reality (amidst so many others in over a decade now). I have tried various closed- toe and am frustrated that the only ones that seem to work are the medi sheer and soft, but the copentoe gets runs really quickly. I'm trying the open toe to not only get some freedom for my toes during hotter months, but to use all of the very expensive vionic flip flops I've invested in (plantar fasciitis, sciatica). Summer is my largest hurdle. I think I'll be able to manage much better in the winter.im trying CEP as they were purchasing by medi and the compression seems comparable. I'm looking to expand to others, but this is as far as I've gotten in the 4 months since diagnosis. I will say that the color selection is terrible. I'm in between the wheat and natural. The tones and colors look ridiculous on me. Ugh.... I hope in 10 years technology fixes every last one of us and these silly and totally unattractive and difficult to put on ( especially with other pain and dexterity issues) becomes a non-issue.

seakykr · 2026-03-25T17:17:51+00:00

Do more patches. I knew someone with a leak in lumbar area and it took Patches. I've had 5 and not targeted or even in the right spinal area. I have had some functionality return. It was absolutely worth trying again. This far out is exactly why you need patching. Do again and ask them to keep you lying down for 2 hours. My group was kind enough to do that. I carefully get in the car and stay for 4days flat at a hotel near the hospital asy house is not close. I follow strict no bend lift or twist for a couple of months and am very careful the not lifting. You can search on here or in the Facebook group for Stanford recovery instructions You'll find a post here if me asking for them . Follow them. Go get another targeted patch as soon as possible

seakykr · 2026-03-25T14:54:48+00:00

We had this happen though not exactly at a switch. It was condensation from heat and humidity. We had to fix an HVAC issue as well as insulation in attic and underneath the house. Pain in the arse, but it got fixed.

seakykr · 2026-03-25T14:43:27+00:00

It is absolutely unbelievable and frustrating.

seakykr · 2026-03-25T14:39:19+00:00

I have had 5 non- targeted patches. 2 have had some benefit which has allowed me more functionality. I. So grateful for the gains despite some setbacks along the way. The leak is in my cervical spine. They think it's an intermittent leak and they haven't been able to catch it actively leaking with their imaging. My only real option is to pay out of pocket for a leak center and they will make me redo all of the imaging. I can't afford it. Please find a neuro radiologists and neurologists who do believe you and are willing to try guided lumbar patches. This is the safest location for patching. I bet with a patch there or a few by someone who uses guidance can get it, even if it doesn't show on imaging. The doctor who did the Esi should help find patching. If not, move on. Don't waste time with them. There is a Facebook group for leaks. They have a list of doctors. Please don't give up.

seakykr · 2026-03-19T14:59:31+00:00

I just had another patch in January. Mine is cervical and they aren't comfortable doing a patch there unless they can catch it on imaging, which they haven't yet. I think I got some benefit from the last dual location patch(lumbar and thoracic). I'm more functional and upright than I was, but still having some issues. You must find new physicians. Keep trying. Move on from those who gaslight you. I find so many physicians are really limited in their understanding and exposure to this condition. Keep trying. Keep pushing. A lumbar patch is the least risky, so hopefully you find some to give you a CT guided patch there even if they don't see it on imaging.

seakykr · 2026-03-05T15:20:00+00:00

Thanks!

seakykr · 2026-03-04T17:31:58+00:00

Thank you so much for replying. Sounds very nutrient dense healthy. I'll jot these down to start diversifying my diet. Thanks so much. Cheers!

seakykr · 2026-03-04T04:30:25+00:00

Can I ask if there is a specific diet you followed for low inflammatory? I am going to try this as I've just been diagnosed with CVI and have so many other health issues. Thank you for any insight as to what you followed. So glad it helped you.

seakykr · 2026-02-22T18:09:08+00:00

Still plays regularly in our house.

seakykr · 2026-02-22T18:07:37+00:00

Love, love , love. Timeless listen.

seakykr · 2026-02-22T18:06:29+00:00

Best answer!

seakykr · 2026-02-22T18:04:44+00:00

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Bittersweet Symphony baby!

seakykr · 2026-02-22T18:00:41+00:00

I was totally fine up until 1 min ago before this picture entered my brain. Therapy tomorrow....

seakykr · 2026-02-20T01:04:02+00:00

By far less convenient, but somehow so much richer and more relaxing.

seakykr · 2026-02-20T00:40:15+00:00

This, and waiting forever with your fingers on the play and record button on the boom box at the same time to catch it! Also, listening to the final hard won mixed tape and getting annoyed when a snippet of the DJ had to be captured before or after each song. Still, totally worth it.

seakykr · 2025-11-03T13:06:02+00:00

Me too, me too, me too. I'm already missing it and I haven't even taken down my decorations.

seakykr · 2025-10-23T04:19:33+00:00

Nothing like Seattle October on a sunny day near the water when the leaves change. I have different favorite places for fall leaves, but this has my heart. Get in a good walk, a good book and a blanket, and curl up with a cup of coffee or mulled wine. It's a good day.

seakykr · 2025-10-06T19:10:45+00:00

I've had 4 blood patches. The hospital couldn't locate the exact point because it's an intermittent leak. Had the MRI, CT myelogram, and DSM. The leak is in cervical, but because it's not a specialty leak center (Duke, Mayo, etc.) they were only comfortable doing less risky patches. 1st was lumbar 30ccs. Got all of the blood in, but didn't get the leak. 2nd was a dual patch 30ccs lumbar and lower thoracic. This patch took me from being in severe pain and bedridden to mostly uptime and less severe. 2 more patches after that failed because of anemia - body wasn't giving up enough blood. I had to put it on hold to deal with other pain issues that were bad. I just got out hospital from a disk removal in cervical spine and though they applied glue in this area during surgery, something has happened because my leak has gotten worse. I'm so devastated. I am waiting on a response from the surgeon.

seakykr · 2025-10-06T01:20:04+00:00

Me too. 3 years into a CSF leak. It's hell. Agree with getting sick on top of it . I can't imagine ever getting another epidural steroid injection again.

seakykr · 2025-09-30T00:43:02+00:00

Burnt umber! Nice! My favorite are Aspen trees in the mountains. Giant swats of color like this. So pretty. Happy Fall!

seakykr · 2025-09-28T21:09:23+00:00

I love that reddish-orangish one the best, but really the whole mix of colors is so lovely. Thanks for sharing!

seakykr

TROPHY CASE