Lisa XO

At one week post op, I thought for sure I had made a huge mistake. I felt like I'd never be able to eat again. I was able to eat again, and it gets easier every day. ?

There are a few things this could be but I would def call your surgeon tomorrow to see what they say.

I was able to sleep on my side the second night (didn't start that way but woke up in that position with no discomfort). Then a couple of days later, I woke up on my belly, again with no discomfort. So, I was able to sleep pretty much normally after the first week. ?‍♀️

My butt has been reduced to just my pelvic bone, really. Flat as a pancake, deflated, bony butt. I look forward to plastics. That's all.

My only big disappointment about the surgery is that I don't recall seeing the robot. I really wanted to see one in person (and remember it). ?

Had an unexpected NSV today. I went to the doc and they had me pee in a cup. So, I did and I COULD SEE THE CUP as I did it. No more just sort of guessing where to put it. lol

Broth saved me. I couldn't tolerate sweet things, so shakes were out.

Earplugs!

The foamies have scarred me emotionally. lol I'm so scared for it to happen again, I am super careful now. I asked my doc when I had my first episode (I'm guessing it was at about 3.5mo postop) if I could take pineapple enzyme, which is a protease. He said that is fine and now I take one any time I have beef. I don't know if it does anything except make me feel less nervous. ?

Eggs confuse my new stomach and are notably hard for a lot of people. At your stage, I couldn't tolerate them at all. Now it is hit or miss.

I was (and still am occasionally) lightheaded, dizzy, and weak. It started a week or two post op and was pretty consistent for a few weeks. It gradually got better as I was able to eat and drink more. Now it is pretty rare. I had an episode yesterday and before that, it had been weeks. I would still give your team a call, if it concerns you.

It took at least 2 weeks before my swelling started to abate. I found it frustrating at the time. It will come.

Hi Mil, there was a time when my youngest was a preschooler that EDS was on the table as one of the things that could be causing his other more apparent medical issues. Eventually it was ruled out, but I did do a lot of reading about the disorder. I can't imagine how scary it is to live with and all the injuries you have sustained can't make that any easier. I hope that there are more treatments available now than there used to be (practically none). About the regain, I haven't been there yet since I'm a freshly hatched chick and still on the down slope (up slope?). However, I feel like you have the tools and know what to do, so you will be able to lose it! I wouldn't fret too much about trying to do any kind of moderate exercise. It doesn't really contribute that much to weight loss, and keeping your joints together is more important! Can you just do the exercises that PT has given you in the past and make a workout plan around those? I'm not sure what they have you do, of course, so not sure how feasible that is. Maybe water exercise would be safest for you? Anyway, I have faith in your ability to get back to where you were. I know it is important for your health. ?

One thing I got right before my surgery that I used a lot is one of those self heating mugs. It took me forever to finish my broth at first and this kept it toasty until I did. They aren't cheap, but you could also get the electric mug warmer that uses most mugs (doesn't keep warm if you leave it off the pad like the mug I have). Most big box places should carry them. So thoughtful of you! Wish you both the best.

Hope everything has gone well for you!