Wednesday, April 18, 2018


Today was another big day.  
I had an early morning appointment to get some ultrasounds of my joints and I also received a big ole steroid shot in my hips.  It wasn't good news.  There's just no way to sugar coat this.  Every. Single. Joint in both of my hands is deteriorating.  I have severe synovial hypertophy.  It's in my hands and my left wrist and my right shoulder.  I don't know exactly what is causing it or how they will treat it until the end of June...My doctor is leaving the country for 6 weeks!  

She did say that I need to stop overusing my hands or I will be facing complete disability in a very short amount of time.  

UGH>...Everything I do involves my hands...from playing the organ every week at the temple or church, to my jobs, cake decorating, flower arranging...everything.  I'm a little worried and upset with the news but of course, as is customary, trying to keep it under wraps so I don't upset the kids.

She said it's so severe that I have already almost lost the use of my thumbs.  There is no cartilage left and that explains why my thumbs often get 'stuck' and I'm unable to use them.  It's very painful but I just try not to complain.  Last weekend playing the organ, I had to quit after just 45 minutes, my hands were throbbing and so swollen.  I felt bad leaving but it's becoming a major deal. 

So, I'm not sure what will happen.  I'm guessing they will take an aggressive route in June with some immune suppressant infusions and then move to weekly injections.  I think this is what will happen because they've already suggested that I'm headed in that direction. I'm just full of dread.  As for the injections I got today, I sure hope today isn't a sign of how well it's going to work because I'm dying!   I have decided not to take pain meds because those are killing my kidneys's all about suffering for me. 

Shelbie got her stitches out today!  It doesn't look nearly as bad as what I was imagining.  It looks pretty bad though...the incision is smaller than I thought it would be.  He had described it as running down her finger and across the top.  I guess because he had to screw it together instead of fixing the ligaments and such, he could make a smaller incision. 

 It's pretty red and ugly but that will look better over time obviously.  She has 6 more weeks in a splint and then we will recheck to see how things are going.
 It's nice and straight! 
 I love this surgeon.  He is the best.  I love everything about his personality, the staff and the nurses.  It is rare to come across a clinic that feels this happy and perfect in every way! 

Tonight was the big Pine Wood Derby Race!  It was pretty fun but only because nothing compares to seeing a smile on this little boy's face- Oh, the 8 year old was pretty stoked too!  Just kidding.  I'm talking about the little kid in the orange shirt.  He is such a darling boy, so sweet.  He has a single mom who has her hands full.  I knew there would be no way she could help him get his car built so I talked to Sam and he was more than happy to help him out.   Sam is so good with kids.  He is full of patience and fun. 

I did very little and just let Sam run the show with the only rule that M had to do the work himself.  We let him choose the design, colors, and then paint it and set the wheels.  The only thing Sam did was use the band saw to cut it out.   We didn't do any research, no sneaky engineering, the whole point was to just show up with a finished car. 
'Big Brother' Sam at the Check In.

Sam and M weighing and adding a little graphite to the wheels
 Lo and Behold...He came in second place!! I was dying!  There were boys there who had nice looking cars and whose dad's did some serious engineering.  I don't think anyone even expected M to show up, let alone take second place.  People kept asking, "What did you do?" We literally did nothing special!  In fact we did everything wrong.  I had forgotten we needed to spray a finish coat so the stickers he put on would stay on, so we just sprayed that on after the wheels were already set in place.  Ha there was overspray and everything on the wheels!  I didn't realize it had to be 5 ounces so this morning, I was chiseling out the bottom of the car to sink some weights in.  I used a kitchen knife and a hammer...cause that's all I had. I made the hole too big so I just filled that up with hot glue.  Tons of hot glue!! It's laughable.  Then, to keep the weights from falling out, I glued a piece of old cardboard over the top.  When Sam came home from his first job, he looked at it and said, "What did you do to his car?"  He was dying in laughter! 

It was so funny. I felt stupid, embarrassed but so happy that little 'M' could enjoy one little success in his life.  He has been through some incredibly hard things but his spirit is strong and he is full of love. I was proud to see him succeed and proud of Sam for taking the time to be a friend to him.  It was the best part of a the week to see my friend, who has been thrashed around by a very hard life, get a break from her trials and laugh and enjoy her boys.

It was a good way to end a very disappointing day. 

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