Neon Lilly Page

22/11/2023

Attention!!! My account compromised. Someone apparently have nothing good in them but will to destroy. Well it's your choice of life Mr. Frail, to be valuable, worthless piece of sh.t.
Email they use
[email protected] and I able to track few names, see attch
They run fake adds and cheap harlots.
THIS IS NOT MY POST!

11/06/2023

What a way to finish the week! Especially awareness week! A lot of us promise to do any activity.I walked, I painted 🎨, I claimed ladder 🪜, floted in the pool, fly helicopter 🚁, with eyes closed,lol. I saved hummingbird baby girl (diff story).
Duke did 5 blood patches with fibrin. And I went to Rebound Intracranial High pressure. I will not post all disturbing symptoms, who cares and/ or familiar with IH will believe who dasnt.. I don't care about them. April was very bad. I want say big thanks very knowledgeable professional Dr. O. Fermo and her RN Mayo clinic who supported me first months in recovery. April I got bad but Duke RN Hope helped again 🙏. I just need remember to take baby steps and listen to my body ,this illness awkward.
Thanks to all CSF leak, Rebound HP, IIH groups
Should someone need more information about CSF send me DM.
Take care of yourself and your closest one.

.info

08/06/2023

Clooney explained "Before the surgery it was the most unbearable pain I've ever been through, literally where you'd go, "well, you'll have to kill yourself at some point, you can't live like this"
People have more tendency to listen celebrities so I have link to one of articles.
(Part2)June 3 last yr, after clinic admitted they made hole in dura and another pain clinic did blood patch.. I got worce.
June 7 ER In Decatur. Things they gave me put me on convulsion and knock me out. ER sd I need another blood patch and go to Huntsville. We contact back to both pain clinics and didn't find support, very irritable they told me find neurologist, refused MRIs. I was told I need to check ear infection, my head pain is reaction on steroids, my eyes vision diffr couse my dizziness.. No any pain killing medication given or recommended. June 17 ER In Huntsville . No resolution but little better, got some medication. And then I started to study... Unfortunately condition again dramatically got down in August, Sept was horrible and we start looking for 3rd blood patch localy till I get North Carolina. However instead of support I was labeled " worred well patient..."
I couldn't tolerate sounds, light, can't focus my vision, only for short period of time, start loosing voice, cognitive function got down, I couldn't write normal, forgetting words., sleepiness, long bedridden days in dark room.. still been pulling myself together to do some business remotely...and.. we closed it, few ppl still care about restaurant, some thought mid night party, changing recipy, show up when they want will be tolerated... and Miracle happened- Duke called and hope was restored.
Before invitation we had phone/msg communications, they have plan of action in place and insurance was discussed and settled. Recommendation sent by New York, local dr refused to send me to proper clinics, ("I will not give you referal!")I guess they thought all Duke thing in my head together with my pain. (One local neurologist started study csf leaks )
Sooo. Check your closest one and support, if they say they are in pain they indeed are, they maybe tired to explain and choose to hide it, to leave with it..

18/05/2023

Year ago right before my Birthday my world was change, I became bedbound and able to see world from down up only.
I am meeting this birthday standing up and rasing awareness about this invisible illness - Cerebrospinal fluid leak (CSF). Everybody knows about stroke, tumor, cancer this one have same symptoms with no medication to heal, to down your pain but surgery. It's can be spontaneous, or after LP, epidural, or steroid injection. So if someone have positional head pain, I call it pain not headache with reason, seek help with professionals immediately.
Thanks to Dr Berk team Dr.Armheym team who returned me to me...
Thanks to .uk who are teamed together and help making invisible illness visible.
Take care of yourself and your closest one.


#здоровье #ликворея

26/03/2023

Last interview

Cultural cuisine is a concept that thrives during Huntsville Restaurant Week, and for some, it allows them to share their signature ethnic dishes.

14/02/2023

Love to all!

I will post from time to time updates. For now I created Chai-hana group ( Eurasian American Tea House) where I share recipes and more.
We do not catering or cook for sale. I still very weak. And recovering from spinal leak. Last surgery done in December at Dukes University

31/12/2022

MERRY CHRISTMAS TO ALL!
Thank you all who supported! Sincertly thank you!
I had another surgery and need be very careful. My phone turned off. Please txt/msg.
LOVE PEACE HEALTH TO ALL!
**DIY.
●Cranberry candy, fresh cranberry, dipped in glaze, sugar powder, frozen for night
●Boil condensed milk 2 hrs. Unsalted butter, cacao powder per wish, any tasty cookie crashed, form balls or anything, refrigerate. Easy make fun worth family and friends. Open your fantasy.

30/12/2022

Not sure what happened to original page. This posted November. Before Christmas, I had another surgery. Staying positive.

**Unfortunately I have not good news. My spinal headache das not go way.
**Back in May local spine clinic did steroid shot and puncture my dura, resulting spinal CSF leak and my dissability..
I had no glue what is Dura puncture mean, and where it could lead. May and June I was in different reality, thinking I'm dying, uncontrollable head pain, my left sign was numb, low back, between sholders pain, stiffed neck, full ears, noise in head, discoordinating. Feeling like you under water.
2 blood patches, 2 emergency.
Both clinics, one who did steroid shot, another blood patch, dump me no help, no recommendation, or gave wrong recommendation, and try to mislead me with diagnos, refused to do MRI or other tests . One family dr refused to give referral to specializing clinic. It's only 5 in USA. Long story shot. I still bedridden most time. Got really bad mid August, mid September I sad good buy to my closest one. Few days ago I "died" again. Same
symptoms including double vision, blurry vision, losing voice, light sensitivity, tinnitus. Headache came as soon as I stood, most time disappeared straight away or within 10/30 mins on laying down. Other symptoms along the way are sweating along hairline on my neck, pain in sternum. Most scary ability to think right. Loosing words.
*I'm not one who complain. I went to my church few days ago, spoke with prist, he asked why I not tell nobody, I need to talk.
And tell what is going on.
So I do. If someone has headache and weakness not diagnosed yet, check for CSF leak. do not depend On MRIs result , as most time they will not show leak, or not properly trained ppl will not find it. It is 3 facebook groups, you can join and find recommendations and answers.
Back to business. Our lease is ending on Bridge st, and we will not renew it. Until I get better no way to say what happens.
I don't say goodbye forever.
Thank you all who support! Take care of your self and your closest one!

Few days Before dura puncture and now.