They used My Brain and Skull for Grand Rounds

Hi everyone! Well good news for EDS pts in the future; at least East Coast people, because Dr. Narayanan used us as grand rounds to discuss the issues and the repair.

She will give us some photos next week. I am glad to help in any way!  

I learned also yesterday that I DO have to set alarms to be sure I don’t go over the worst of the pain level.   Feeling some some more comfortable.  Pat L helped “dry shampoo” my stinky sticky locks until I can wash it (Thank you Pat!). 

Also thank you all for your solidarity! I know at times people cannot post on here but don’t worry you will be able to tell me later that you are with me!

It will be quite a slog as many nerves and muscles will need to try to relearn patterns. 

We know it is gorgeous and warm back home and hoping we finally get rain!

The SOCK say I am smiling (Whether or not I am….)!

This princess’s nutrition:  It is not uncommon for people with this surgery to have to relearn how to swallow and to have incoordination of the swallowing muscles.  I was able to get down a tiny amount of scrambled eggs, some yogurt, thin liquids are OK as are thick liquids mostly.  




 

Comments

  1. Jackie NagelMarch 26, 2022 at 6:08 AM

    I guess I won’t complain about the headache I woke up with this morning. 🤪 You look fabulous although your journey is no joke. You know, Ruth, you’ve been through so much, not just now but your entire life. And you always handle it with grace and courage and strength. It’s not easy but then…what are your other options, right? You are incredibly strong. Your determination is inspiring. And my heart is there pulling with you and for you for each victory. You are ❤️

    ReplyDelete
  2. SheilaMarch 27, 2022 at 5:48 AM

    You still look beautiful and amazing and I’m proud of you! Keep up the healing, glad Tio is there to take care of you 💕

    ReplyDelete
  3. Lisa SteeleMarch 27, 2022 at 8:20 PM

    You look wonderful and I love your sense of humor. You are one of the strongest people I know.

    ReplyDelete

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