Monday, April 27, 2015

Surprises around every turn

I started my day so grouchy! I don't really like mornings at all but Dan had an appointment at 830 at the VA so I had to get up at 645 and after not sleeping well last night I was grouchy! Then He had trouble sitting up so every time I let go of him he would start to fall over so I would have to stop and catch him to keep him from getting hurt (he was sitting on the bed so he wouldn't have I just panic easy these days).  Sheesh it was so aggravating! But some days are like this.  Now we have to wonder for the next couple of days it he going to have trouble sitting up tomorrow? Is he going to have trouble from now on or in a few days will he be able to sit up again.  That is what ALS does it leaves you wondering every day if this is the end of something big.  He shakes when he walks more than a couple of feet (with his walker of course).   And that is getting worse every day. Last week he could walk across a room now trying to get to the bathroom is an issue so he uses the urinal every time except when he is having a bowel movement.  That has happened in the last month.  Back in March his chest starting hurting again, it had back in December while we were in Louisiana visiting family.  That time he had bronchitis.  We were afraid it was pneumonia and that is a really bad thing.  I asked him to go to the doctor and as it got worse to the ER.  I think he is sick of doctors because I got the "no it will be ok" line.  Finally he gave in since the pain was so bad he couldn't stand it anymore.  So off we went and it turned out to be a blood clot in his lung.  So that added even more meds to his criteria.  He was in the hospital for 3 days.  It was his first hospital stay.  They assured me there would be more. When I ask about how he is doing sometimes I am told "he is not dying yet."  Well, sheesh I knew that.  But some days I just need reassurance. So a couple of months ago I went online to see if he was close to anyone else's schedule of if it was as fast as it seems.  There was nothing.  This disease hits everyone differently. There is no schedule or even estimates! We have no idea what will hit or when.  We don't know if we will get something new any days or ever days.   I wish I was bigger/stronger/smarter or something because I often think a different person could help him better.  Who knows how or why but here we are and I will do the best I can as long as I can. 

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