Wednesday

I talked to the RN again Wednesday and there are scheduling issues. So, next week's trip is off, but the surgeon had her tell me he's still going to call for us to have a talk, and they will book the surgery then. They asked me to go ahead and fax the test results and consult reports J and I went to pick up Tuesday so I took care of that within a few minutes.

I'm a little disappointed but also a little relieved. At least it's still going to happen, but this way we have more time to get things situated. We have been in a panic because of the trip prices. That won't change a whole lot I expect but hopefully I'll get more than a week's notice and maybe the cost won't be so high as last-minute like this.

I'll update after he calls.

Tuesday night ramblings

Actually it's Wednesday morning since it's 2:23 a.m. but I doubt anyone is going to argue.

It's just been one of those days. Spinal cord shrieking, lungs crying out to be let go. I was able to sleep and escape for a couple hours this afternoon, which was a blessing.

I crocheted the 6 squares that will make up the 3rd panel of my daughter's blanket. It's coming along nicely and is a good way to try to distract myself from the pain.

I took a poll/survey today with some friends regarding our age. Sometimes the seemingly smallest of things can play with my heart. So I'm 30. My birthday was earlier this year. I'd hoped to have a big day, maybe over the weekend or something. Nothing really happened in that regard but my home group took me and the kids to Applebee's, which was a nice treat.

The poll today though, it's hard to explain. I guess it relates back to the birthday because there's a feeling inside, something I am thinking is jealousy. My friends put their answers, scattered across the decades, and I see them and stare in silence and just wish to reach 31. DH knows though it is not at all costs. Having been on life support before, it is not something I am willing to go through again, especially with this combination of incurable disorders and tumor impacting my brain stem like this.

I should hear from the Dallas surgeon in another day or two, provided the hospital where the cardiothoracic surgeon is located actually faxed the notes. He told his nurse he will call me himself, so I'm very curious. I added a couple of links to the thoracic outlet section on the right--one on quality of life, and other an article from the Mayo Clinic.

Guess that's enough of me rambling in the middle of the night. Hopefully I'll get some naps in later to make up for right now. I have no plans for today, not outside the house anyway. I'm going to check up on the faxing issue and do lots of crocheting.

Today's cardiothoracic appointment

I got put in a holding pattern. He's afraid to do anything because of how high the chances are of complications with the Ehlers-Danlos. in the mean time, he wants a strengthening program--which he knows can't be done as I permanently can't lift more than 3 pounds. and wants me to learn to sleep in a different position because I'm killing this artery--but knows it took me the last year to learn this one. he really doesn't have a grasp of the CM/EDS impacts, other than EDS has its risks and it seems to be scaring him off.

So I'm supposed to build up strength (but wait DON'T do that!) and sleep differently (but oh you can't so go ahead and finish off that artery and lose your arm) so see you in three months. He admitted he's a heart guy, not a "world expert" in thoracic issues. He said he'd support getting another opinion, particularly a doctor in Denver, never told me his name as I was just floored and didn't think to ask, said he'd have no problem sending me there.

My Pain Man had called one night last week and said he and the other doctors in the practice were talking about me and really want me to see this other doctor--he IS a thoracic outlet expert. He lives in Baltimore but has an office here in Arizona, comes here about every 6 weeks. They're getting me in to see him on the guy's next trip here. Dr...Dellon? Pain man gave me Dellon's website and they had all these books they made on stuff, and there was one completely on thoracic outlet, so I linked to it.

Today just didn't go at all like I thought since he had been planning surgery, thought I'd be getting a plan of action and date today. Here, for once, I have a FIXABLE problem (like that has ever happened before???) and they run away, run away.

It's not the end of the world. Maybe the end of my arm, but maybe I'm just supposed to go bit by bit??? I don't know.

Phone tag, I'm not it

I've been having difficulty with playing phone tag with the cardiothoracic surgeon. I tried again around 30 minutes ago. His assistant actually answered, and admitted she thought the dr was going to call me so she never followed through to see what the notes said (if he wanted her to call me, was she to set up the last couple of tests as pre-op, or go ahead and book for surgery). She again apologized (isn't THAT getting old) and said she was going to wave it in front of his face and ask for "specific" details on what to do.

Sigh. Onto another day.