People, please, please check out stuff before you re-post or forward. Most of the stuff that’s floating around is at best a mixture of truth and fiction, and in some cases are outright fabrications.

Please, don’t just see something, have an emotional reaction and then re-post. Do some investigating. Look it up. If you don’t like/trust Snopes.com, just do an internet search. Don’t just reject Snopes.com and post anyway. Try to determine the original source (not the person you got it from), and figure out if that source is trustworthy, and what, if any, bias they may have. And if you can’t verify that the details of what you’re about to re-post are true, don’t re-post it. This is especially important when posting stuff designed to elicit an emotional response, and especially if those emotions are fear or anger. Please, don’t waste your own emotional energy, and risk passing it along to others like an emotional virus, if it may not even be true, or only partly true.

In some cases you’re passing along instructions (like the Backwards ATM PIN and “call 112″ urban myths) that will do someone no good if they try it during an emergency, and could actually make a bad situation worse.

This also applies to clever or touching anecdotes that are totally fake. Sure it’s a good story, and it may make you say, “Awwww” or cause you to shed a tear, but the problem is people are reacting as though these stories are true, when they’re not. It’s like getting emotionally upset or uplifted by something that happened on your favorite sitcom. Don’t allow yourself to be emotionally manipulated.

Sadly, even some of the viral prayer requests or requests for cards are not true, or half true. Prayer is a wonderful thing, but look it up and make sure you’re spending time praying for real people, and something that is really happening now (and not over 10 years ago). Before you send cards to someone you don’t know, look it up and make sure you are sending cards to a real person, or the right address before passing it on.

For Christians, it’s especially important we not pass along unverified information, especially if it’s about another person (including celebrities and politicians). At best, it’s gossip, much like saying, “Well, I don’t know if it’s true, but I heard…”, and in some cases it’s outright bearing false witness against our neighbor. Why in the world would we pass along anything attributed to another person (even something we think is good), if it might not have really been said/done by that person? If it’s even partially untrue, it’s a lie. Don’t pass it on.

And, please, please don’t allow yourself to feel hurt, defensive, angry, irritated, or otherwise put out when someone points out to you that something you posted as fact is partially or totally fabricated. Chances are the person correcting is you is not in any way trying to make you look foolish or shame you. They’re just trying to correct false or misleading information before it spreads further.

We should all, myself included, ask ourselves three questions before we re-post:
1) Is it true?
2) Is it edifying?
3) Is it necessary?

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So, Jade’s got a new cardiologist. Apparently Dr. Albrecht is scaling back his practice and giving over the traveling part of what he does to one of his colleagues, Dr. McQuilkin. Dr. McQuilken is quite a change – as he is almost of the opposite of Dr. Albrecht. He’s much younger, much smaller, and very soft spoken, whereas Dr. Albrecht was a big ol’ grandpa type guy who liked to joke around. But the standard of care is the same – excellent, and we like the new doctor.

I brought up the recent Ehlers-Danlos diagnosis, and the fact that Jade is already showing signs, so there were a couple of things we needed to have checked out in her appointments: her aortic root, and her mitral valve. He seemed to know exactly what I was talking about, and what needed to be checked and how often, so that was a big relief.

The exam went really well. It’s the first time Jade has actually just laid still and not fussed during the echo (and EKG). He got a good look at everything and even told us some things that were different from what we’ve been told before – or maybe he just explained it better.

1. Apparently, she has 2 VSDs. Not one like we’ve always been told. There is a very small, mostly grown over VSD down in the bottom of her heart. Thankfully it’s in a part of the heart where it wouldn’t have done a lot of harm, and so it’s not a big deal that it was missed – especially since it mostly closed over.

2. I’d been under the impression that the VSD we knew about had grown almost closed, which was why she didn’t end up needing surgery, but according to what he saw, it’s actually still quite a good size for a VSD (7mm). He explained that it wasn’t reduced size that caused her to not need surgery. What caused her to not need surgery was the fact that it did get somewhat smaller (smaller than it was, which was huge), along with the fact that one of the leaflets of the tricuspid valve has actually adhered and grown over part of the defect, minimizing its affect on her. He said that often happens where the VSD is close to the tricuspid valve.

But other than those two little surprises (at least for me), it’s all the same – everything looks good, pressures look good, valves and aorta look good, muscle bundles haven’t changed.

So as long as she doesn’t develop any leaking around her aortic valve, she’ll be just fine. He did caution us, though, that if they see even a little leaking around that valve, to surgery she goes, to prevent damage to the valve, and eventual replacement. As Dr. Albrecht has explained before, if damage to the aortic valve is not detected and prevented, then the valve has to be replaced, and that winds up meaning future child bearing is made very, very risky and inadvisable, due to the long-term medications involved with valve replacement. So definitely want to keep on top of that.

All in all, a very good appointment, and all signs point to continued provision by God for Jade’s health, so we’re thankful!!

Just got a call from the Genetics office at UVA. They finally have the results of my genetic testing to confirm or rule out the Vascular Form of Ehlers-Danlos syndrome.

Thanks be to God that we got a normal result back. Praise God!

This means I have the “Classical” type of Ehlers-Danlos, which involves hypermobilility of the joints, tissue fragility and the pain issues that go with those. The counselor made sure I understand that this *doesn’t* mean I have zero risk for vascular involvement, because I do have some cross-over symptoms, but that it means I have far less risk than if I’d tested positive. They want to see me in a year for a follow up, and we’ll take it from there.

My hematology appointment is set for the 16th. I fully expect that to come back normal as well. Basically, when they read my MRI results, they saw what looked like areas of “red marrow reconversion” in my spine. Everyone’s born with red marrow, and as we get older, it is replaced with fattier yellow marrow. Sometimes the marrow undergoes a reconversion back to red marrow. There are a lot of reasons this can happen, and most of them are fairly benign. For instance, anemia, etc. But there are some more serious things that can be associated with that finding, so they just need to figure out what’s what, or if it’s just a benign process in my body. I really don’t have any worrisome symptoms that would point to a serious cause, so in all likelihood, this is a completely benign finding, and most likely a “CYA” type situation where they want to make absolutely sure there’s no other underlying reason for what they saw on the MRI. Even so, I’d appreciate prayers for the appointment.

After that appointment, I think I can just relax a bit and settle into figuring out what Ehlers-Danlos is going to mean for me (and possibly the kids) instead of waiting for and wondering about various test results.

Just got the results back from my MRI and Echo at UVA.

Echo: Didn’t find anything wrong.  Everything looks normal.  Normal structures. Normal function.  This probably also means that I do *not* have the Vascular type of Ehlers-Danlos Syndrome, all though I’ll be waiting for the genetic tests to come back before I break out the party hats.

MRI: Didn’t find any signs of Chiari, Tethered Cord or Syringomyelia.  Just the disc degeneration in my neck that I already knew about.  Another cause for Praise!

They did find some mild signs of my bone marrow converting from yellow marrow back to red, which is a little unusual, so she’s referring me to a hematologist, just to make sure nothings the matter there.  Probably nothing, but better safe than sorry.

So, while I still have Ehlers-Danlos, and I still have to contend with what ever that has and will bring me, for now I seem to have dodged many of the major/more dangerous complications that can be associated with the disease.  No spine involvement.  No valve/aortic involvement.

Praise God!

Sometimes what seem like inconsequential annoying things all add up to one big thing, or as I put it to my doctor, sometimes what appears to a bunch of random, isolated stars turns out to be a constellation, when you stand back and look at the whole picture.

Well, today I have officially joined the ranks of people who have “invisible chronic illnesses.”  I don’t look unhealthy.  Heck, most of the time, I don’t even feel unhealthy, but there is a problem, it’s genetic, and at times, it can be painful.  You just can’t tell by looking at me.

A while back I saw the doc for a suspected abdominal aortic aneurysm.  One of those “probably nothing, but better safe than sorry” type situations.  I noticed that I could feel something pulsing strongly in my abdomen, and so did my doctor.  It was clearly my abdominal aorta, but it’s unusual to be able to feel it so easily.  She ordered an ultrasound, and thankfully, my aorta turned out to be normal (just easily felt).  Big sigh of relief!

*However*, while I was waiting to find out if I had an old man’s disease, I was reading on reasons why a young(ish) woman might have an AAA (esp. with family history), and saw that in young people it’s often a sign of a connective tissue disorder.   One was Marfan’s Syndrome (easily ruled out), and the other was Ehlers-Danlos Syndrome.

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