Broken eggs

It is finally my appointment with one of the top Drs in the world for autonomic dysfunction/ failure! I've been waiting for months and all of the insurance and referral paperwork is finally good.
This Dr happens to be at Stanford in one of the few autonomic clinics in the world, lucky me it happens to be a mere 20 minutes away!!
So, tomorrow I visit the autonomic clinic in neuroscience of the neurology dept at Stanford. Lots of fancy words to hopefully mean they'll know what to do for me. And yes, my eggs are all in this basket. I learned

not long ago to not do that. To never get my hope's up. No expectations and you can't be disappointed. Or more accurately heart wrenchingly devastated.  But all of those fancy words and the research I've done on this clinic makes me honestly think they will be able to give me some sort of option other than to take a medication that is on the verge of being discontinued by the FDA and "carry Gatorade with you and eat more salt". Yep, that was actual advice from Drs for the fact that my blood pressure plummets when I stand up.
You know its funny, I'm so anxious for this appointment but at the same time almost don't want it to happen because this is it. The best if the best. If they can't help me no one can. So if I haven't gone yet, there's still that magical chance that I will actually be able to feel better someday.

So will my eggs break? Or.....

Stay tuned.....

Managing expectations - part 537

One of the most impossible things to do in life I think is manage expectations, but especially In chronic illness. Not the expectations of others as it might seem. Not even my expectations of myself really, though those are in my thoughts and heart at all times. The expectations I find it hard to manage are the imaginary ones. Ones that literally only exist in my head.
I make up expectations that others have of me. I think a lot of us do this, I'm not unique, but this is the latest and truthfully most ongoing thing I think I deal with.
I believe I know what other people's expectations are of me. I'm wrong. And the line between my expectations of myself, which are always unreasonable high; and my husband,

Ok anyone who knows me knows why I picked this one, but it's still true 😂

friends' and children's expectations is very blurry for me.
I don't have any great answers or insights on this. I wish I did. I do know that until I can reconcile my unreasonable ones and the ones I make up and understand others actual reasonable ones (and often even irritatingly low ones) I can't be at peace with being sick all the time.

None of this makes sense. I know. It's crazy and irrational to impose my made up expectations on other people, and frankly extremely unfair. My expectations of myself are super hero high, as my husband likes to tell me, but that shouldn't make me frustrated and worry about not living up to them for others sake's
right? Yeah, I'd laugh if it wasn't what is bothering me today as I sit in a dark room waiting for M to get home from work after picking up our little boy. A little boy who asked to be picked up early but I just couldn't (in all fairness though even when he asks to be picked up early he gets mad when I actually do because he has so much fun at his after care program. He's very indecisive sometimes lol). Meanwhile I'm trying to think of an easy dinner to make or have someone else make and listening to my daughter play with her friend.
Definitely not a new situation, just the current one. And it's reinforcing my arrogance in thinking I know my husband is expecting dinner when he gets home and was expecting me to pick up B and I'm failing him right now. Thinking my daughter is in her room playing with her friend thinking her mom is lazy so I'm failing her too. Thinking my little boy expected me to pick him up and is hurt and mad that I didn't, once again failing. Logically and cerebrally I know I'm not failing "them", and that none of them are thinking any of those things, but damned if I can get that through to my actual thoughts and emotions. See, I've taken my expectation of me and made them THEIRS. How unfair and cocky right? Yep.
I am expecting to do those things and not being able to do them is making me sad for my family and angry at my body and we know, from vast experience, that that is a complete waste of everyone's time and energy. Yet I can't seem to get out of that loop.... apparently I'm really slow in this area....

I get by with a little help from my friends....

Yep, I'm going all Joe Cocker on you now. No not Ringo, Joe. Look it up if you haven't heard that version. It's amazing and was played when our bridesmaids and groomsmen walked down the aisle at our wedding for a good reason.
Friends are the family you choose. True friends are the ones who lift you up just by being there. Who understand you and don't care if you are in your pajamas with frizzy hair drinking coffee or wine or dressed up out for a night on the town. Happy or sad, chatty or quiet. I am lucky enough to have many of these kind of friends. And I was lucky enough to have hung out with some of them recently. Few things are as recharging as a night with friends laughing and catching up. I needed it. I didn't realize how much. I was scared I wouldn't make it, because that's always a risk for something planned in advance with my health, but the universe was smiling at me and I made it to our mom's night several nights ago.
This is a success story post and a reminder that bad weeks, bad days, even bad months can fade away when laughing with a friend. There's always a moment that will make you remember what life is about and how simple that can be. If you feel sick or nervous or tired or scared it seems far away when sitting with a friend catching up and telling "me too!" stories.

So with a huge contented sigh I went tobed that night. Yes in pain and exhausted. I mean it's not a miracle cure 😂 But with a big smile in my heart thanks to some special ladies who lift the spirit just by being them and remind me of my motto - simple pleasures can be found anywhere and are what life is about. Don't take them for granted.