The house, the syndrome…

It has again been longer than I would like between posts but we have had a little going on here.  We are working on buying a house and things have just not gone the way we would like.  We are getting the house, so that is the most important thing, but we were hoping to move in tomorrow (I am writing this on Friday not sure when it will post) and that is not going to happen.  We are still waiting on papers that we can’t control and we have given it to God and we realize that there is nothing we can do to speed things up.  In a way it’s good we are not moving tomorrow but in more ways it is not so great.  We will not have my brother’s help, or any of his football buddies (they leave for football camp on Sunday) and we are not sure when we will be moving and we have to be out of this house by the 3rd.  Soooo… We give it to the Lord and know he will provide.

On top of the house issue I am waiting to hear the results of my CT.  How is the aorta?  Do we need to replace it in 6 months?  A year?  How about 5 years?  The thought of being cut open and pulled apart just does not sound fun to me and I really am not looking forward to the whole thing.  But here again, God is in control and there is really nothing I can do about it.  I can take care of myself the best I can and listen to what the doctors have to say, but that’s about it.  There is no benefit to stressing over the situation.  It is what it is and we will take it day by day.

I see the doc on Tuesday to find out the CT results and I am going to take that time to ask how he knows it is Marfan syndrome.  After doing a bit of reading I am not sure if that is what I have or if it’s another related disorder.  In the long run it really doesn’t matter, my aorta is dilated and that is all there is to it.  But I must say that it would be nice to have a name for the thing that is changing your life rather dramatically.  Having a name for the pain seems to help one cope just a little bit better.  This was not necessarily the case after my five trips to the ER in the beginning of the year, but that was a bit different, at least for me it was.  I am sure for my family it was a big relief to have a name for what was rendering me motionless.  For me it made no difference, I was still losing control over my own body and the name meant nothing to me at the time.  It took weeks before I could even pronounce it for cryin’ out loud.  At least with this syndrome I have some time to process the information and maybe even have a thing or two that I can do to slow its progression of the heart dilation.

Well, that’s all for tonight.  Check back mid to late next week for an update on both the house and CT results.  Until then, God bless and keep the prayers comin’…

Saved by the blood,


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