I don't have the emotional strength to go thru all this. I'm freaking out. I'm actually a bit scared that this is going to kill me.

Erin,
I know that it is a hard time for you, but projecting into the future with what might be, can make it all the more difficult. Try to put your focus on one day at a time and in each day hang on to at least one positive...and there are many; so much of which we often take for granted.
You have a roof over your head, family near by, the support of others, including those here; and most of all a mind that is intact. If you have faith in a greater power (not necessarily a religion), so much the better; because that can lift us beyond the downward spiral of excess self concern.

Celebrating the positives in your life while tending to the body's needs will get you through, and you may be pleasantly surprised to find how strong you really are. Never forget that the world needs you in it or you wouldn't be here.

Today is a new day.
Paint a picture of it in your mind and then move right into it. When the body is struggling, rest your mind there and the body is sure to follow. The sort of picture that you paint is of your choosing, so maybe a sanctuary of sorts would be something to try.

Personally, I often begin a day by "resting the mind" beneath a tree in a green & shady forest, while bathing in the warm dappled sun light...and some times I become that whole experience. Somehow, the influence of that experience carries through during the day, making what ever comes, easier to deal with.

Delusional? Maybe, but it sure beats the harshness of projecting the alternative and resting in that, doesn't it? Especially when some of our projections can be seen as equally delusional; because they haven't happened yet and maybe never will.
Either option requires the same amount of energy, so why add to, hang out in and become something more unpleasant than actual (without the addition of story lines) reality?
I think that being able to choose is something to celebrate in and of itself, and Erin, you have a mind that is clearly capable of making that choice.

I wish you a day of "resting the mind" in celebration and light heartedness .

With love, Erika

Wonderfully supportive, helpful post Erika.

Thanks missj,
I'm not too worried about having the TEE and will tell them to send the probe down the right side of my throat if possible, as it is numb and I don't have a gag reflex on that side. I'm hopeful that they can do it without drugs, as I react poorly to most of them.

The thing that has had my mind racing is the potential of needing surgery. I'm with Erin on having a bit of a phobia about them. This body just doesn't like them and I've had a few rather major ones in my life. Sigh...not much I can do about it if I do need it though.

I was 'lucky' in that I had 10 years to 'prepare' for the surgery. At first the MVP was mild, and back then the doc said that if it progresses then surgery will be in order. Over time it did and there we were.

I am sending calming wishes as you process the thoughts about surgery.

missj,

When you had it, did they use a general, local down the throat, or did you go without any anesthetic for the TEE? I'm hoping to go without.

With love, Erika

The only procedure I could not deal with (i.e.finish) was a tube down the throat. My gag reflex was just paramount. The doctor was disgusted. I then went to Dr. Wright, the well-known "alternative" MD in my area at the time. His associate Dr. Gaby used the Heidelberg test on me, which is to swallow a tiny radio, the size of a capsule, and inject something that stimulates stomach acid. One can see how much stomach acid is produced, and the capsule is then excreted.
This test showed I had no stomach acid. The test was for stomach pain, which I had lots of in those days, and took Mylanta for excess acid for many years. I stopped the Mylanta, of course, but the pain persisted because it was probably from the effects of Porphyria, i.e. an inflamed nerve causing spasticity in the area, etc.
I know your test is not limited to looking for stomach acid, so perhaps you have to have the tube down the throat. The only way I could possibly do this test is with general anesthetic.

Yeah, they need to put the tube down there to get a better look at the heart.
The radiologist said that because I'm so thin, there isn't any fat around the heart or lungs, so every time I breathe, the heart moves out of the picture on the ultrasound screen. Exhaling and holding my breath let them get some good pics but they still need to get a better look, so they'll do that through the esophagus.

With love, Erika

just having a very bad day. I can barely walk. I want to sit outside, but I can't get out into the front yard from the front door. To get there from the garage is further than I want to walk.

If my dad had listened to me about putting in a ramp last summer like I wanted to, maybe I could go outside. When I'd asked about it, my sister and and aunt were there. I pretty much got mocked for asking to put in a ramp.

almost have a feeling that I'm going to need more steroids than what the doctor gave me. (taper starts out at 40mg x 3 days, drops by 10mg every 3 days) I only started it yesterday, but I feel worse than I did tho.

all I want to do this weekend is sleep, but I don't stay asleep. I was having a really hard time just trying to walk around the upstairs earlier.

went out for breakfast with my parents and my aunt today. Place was crowded, and the servers kept wanting to "put the walker away". I have a real problem with them wanting to move the walker away from me. As if I could get up and go get it when I need it. I folded it up and leaned it against the table. They still kept wanting to move it. We weren't out in the way either. Drives me nuts. Want to tell them to not touch my <swear word> walker.

This is definitely a new flare that's going on. I'm just so tired of feeling like I'm in a constant flare. It's exhausting.

Sorry Erin, feel better soon.

Thinking back, I remember now that they did give me something to relax me but not knock me out. And they also gave me a mouthwash to swirl around to numb up my mouth and throat.
I do not recall it to be too terrible at all.

My hubby is a doc too so he was there watching the procedure.

It was the heart cath procedure that required me to lay flat for 4-6 hours afterwards since they go into the femoral. That was weird since I could feel the cath tickle my heart.

I too am slight and thin and that really helps when it comes to heart things in general.

Breathing with and for you