Thursday, February 2, 2012


Have you ever heard you have a choice how you deal with life?  I believe there is truth to that.  But I don't believe it is entirely 100% correct.  I believe that everyone is different.  Our bodies are different.  Our chemicals are different.  What seems like no big deal to someone else is so much more to someone else.  I have dealt with this my entire life.  The poison I call it.  When something triggers me that I don't care for, I can feel it go through my body.  Its like a leak of yuck in me, producing foul, anger, sad emotions.  Over things I would normally shrug off.  Over things I know will turn out fine.  But no matter how many times I tell myself this fact, it still gets me, creeps back in.  It kind of feels like depression or maybe grief.  My grief yesterday was triggered at Gary's clinic appointment.

Rheumatologist Retirement
"Don't you look nice!" she said as she entered the room.  I thanked her and thought what a nice compliment.  We started with our usual chit chat.  How are you?  How is he?  How are things?  Long list, and she saved the best for last.  I will get back to Gary later.  "Erika, I have something to tell you".   That triggered no emotion in me.  It didn't strike me until the next sentence.  "I'm retiring."  She intently smiled and grimaced and waited.  I don't go around asking woman how old they are.  I couldn't believe I didn't realize it was time.  She is 65.  She has done her time.  But my reaction.  Panic.   My thoughts spun.  They pushed forward then swung back.  I went into a stare.  Then tears welled up, went away, and came back as I said, "you can't,  you can't do this."  As my emotions and ration kicked in I went into what a polite selfless person does and congratulated her.  Told her I understood.  I began to thank her, because that was in fact my heart,  I am thankful.  Then I stared some more.  She told me I have done an excellent job in Gary's care.  She was being sincere, but again, its a natural reaction to smooth it over.  She stared at me.  Another round of tears came and went.  We reminded each other of past treatments, and what a wild ride it has been for Gary.  I told her given the severity of Gary's case, that she and her team had done a very impressive job of getting him back and keeping him functioning.  I suppose I am so upset with this because as a patient there is a vulnerability of connection.  I connect all the bad news that has come with this disease, and the good.  Even when I had complaints, there was always praise and gratefulness.  I have been mad at her for silly things.  But I can't barely remember those.  I know it will be alright.  I already called and am on the schedule to have another doctor with the same level of experience, whom I respect, take over.  She told me I was on the list of patients she was most worried to tell.  The emotions this triggers is unbelievable.  I do tend to be emotionally dramatic maybe a bit irrational  when I hear things I don't care for.  Not loud or rude, well maybe but she was right to worry.  I'm still trying to entirely connect I'm taking this so hard.  I am in the market for a fabulous retirement gift.  I know with time I will mend.  LOL.  Feel like I am going through a break up.

Calcinosis around tail bone. 
Before the bomb was lowered, we went through all the discussion.  I told her I was done with this cough.  I wanted it to stop.  Please help me get this fixed.  Same with the diarrhea he has 12 times a day.  She is wonderful, she wants it fixed too.  Tomorrow we have a CT of his sinuses to see if its a drain.  If its not his sinuses then we will check if it is coming from his tummy.    She said she would check with the GI department to see if we could prescribe an anti spasm medication for his colon.  We moved on to JDM stuff.  I told her his nail folds look like crap.  She wrote down bad.  She giggled and said, "I will write bad if thats ok?".  She is very much use to me.  Upon examining she said, "I don't know, they don't look".  She stopped when she moved on to the next finger, and the next.  Did a never mind.  He has one or two fingers that are ok but the rest you can see visible dilation of the blood vessels.  I let her know there are a few new calcium deposits in his face.  The calcinosis around his tailbone is showing signs of surfacing.  For a few days I thought they might be a little pimple or something.  Most the time I can gently schratch something like that off.  It didn't.  She talked about seeing a surgeon so they are aware of him.  However, upon examination she said they are pretty deep still so it could wait.  We are under doctors orders to still gently.  She did his strength test.  We had a conversation about Gary's hesitation with stairs and certain things he can't do that leave me seeing muscle weakness.  She made a remark about how strong he is after doing the test.  I know she doesn't say that to negate what I am seeing or make me feel like a crazy Mom.  The victory was mine however at our next appointment.  Gary had a physical therapy evaluation.

I can't wait till she gets the report on this one.  The therapist hit every point I was seeing.  His function his there but his strength is not there to support it.  He has hip and leg weakness.  He straightens his left leg.  The therapist said it could be from calcium, "he goes up and down the stairs with a lot of compensation, like leaving his leg straight, pivoting his hip", much like an eighty year old man.  I am not sure how many times a week we will be doing physical therapy yet, but the orders will be doing in.  Time to get this boy strong or stronger.

Gary is such a sports guy.  He loves it.  So I signed him up for soccer.  Hopefully he will just stand there and look cute so the ball doesn't hit him or anything like that.  Doubt it.  It will be good for him? Hands over eyes.

Infusion next week.  Not looking forward to it.


  1. Gary we are praying that you start to feel better soon. Hopefully the docs will get it together and fix you all up! We are pulling for you <3

  2. Praying and praying for strength!

    Have you considered putting Gary into a gymnastic/tumbling class? This develops a core strength as well as muscular strength. It will also keep him agile yet not risking injury. It is tons of fun and little kids just seem to love it.