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A day in the life...

Sep 02, 2010 - 0 comments

I had almost called Dr. Cocky yesterday to set up an appt to learn how to give myself my new dmd's.  Something told me to wait.  Not good to push to hard, sometimes you just have to let it work itself out.  I will call in the morning if I still feel I need to but for now I am going to just let things happen.

At 8 pm last night I got a call from Ellen, my "new" nurse from SS (Shared Solutions).  Nicolette had been my previously assigned nurse who was taking a long weekend and wouldn't be able to get to me until next Tuesday. Ellen introduced herself and said that she had heard that I was ready to get started w my meds.  Yes, I told her and explained that normally I am a very compliant person but that the last week I had been working towards getting the med's and didn't see the logic in waiting just b/c it was a holiday weekend.  No problem she said, she had recently moved here from Florida (where she did the same thing) and was very anxious to start there in Dallas and she was very excited that I was her first patient here.  Yippee!  We were the answers to each other's prayers.  Her schedule was wide open so we settled on Friday evening at 7:30 pm to go over how to inject the meds.  She suggested my dh be here to see how to do it as there may be areas I rotate injections that are difficult for me to get to and he will have to do for me.  

As I was writing the above entry the copaxone arrived. Wow, box a lot bigger than I expected. About 12"X13" with large label that says to open immedately as contents need to be refrigerated.  Inside the box was a smaller styrafoam cooler with ice packs.  Guess I won't be needing to buy any more ice packs for a while.  Also in the box was a very bright red sharp collection container for the used syringes (looks to be about a gallon sized).  Huh, hadn't really thought much about that. I will have some biohazard materials here at the house.  Will have to check with the nurse to see how I go about disposing of the contents once the container gets full.  Am also wondering how traveling will work.  Will probably have to set a timer on my phone to make sure that I take my injections every night, forever.  Hummmm.  Life is going to be very different.  Time enough to figure it all out.

The kids had a friend over after school yesterday. The major talk of the afternoon was Homecoming.  They are starting to put their groups together and discuss clothing.  Lot's of laughter and lots of loud back and forth as they all tried to get their thoughts heard in the midst of snacking and working on homework.  

We had a nice family dinner at 7 and then it was focusing on finishing homework and getting ready for the next day.  I took pity on the kids and made their lunches (normally they do this for themselves) but with their schedule of getting up early for vball and lots of beginning of the year homework I was happy to pitch in.  I had a great rosary sitting before heading to bed.  Still a very strong feeling that things are happening the way they are supposed to.  There were some tears over just being so darn happy in the mist of all this.  Life is really good and I do feel that in spite of the many challenges, that this rocky, steep road is the one that God had intended for me all along.  I try not to dwell on the why or why now or even the grieving. It comes when it comes little by little.  This is not the path I would have chosen but it's my path now and as I tell my kids all the time, you can plan all you want but when
God has different plans, guess who wins?  By 9 I was in bed and slept pretty darn well.  Maybe the best in weeks.

Physically this morning is similar to yesterday morning.  Very faint, faint numbness on right in foot area and part of arm. Trunk seems to have no numbness.  Slight twitching in my right pinkie when I am reading the paper and there is that feeling of water or some sort of soft sensation along my arm every now and again.  That area just above your back but below your neck (boney area) is slightly sore due to constantly looking up and not down I am sure.  It takes some energy to remind myself not to look down all the time. The poor dogs. I hope they move a little faster as they realize that I often times dont see them lying on the floor.

This morning air conditioning contractors are here to replace an old air unit that is only 1/2 functioning.  I debated whether or not to get into the pool before they arrived.  It is cloudy and drizzling and the contractor was due to arrive at 8:30. Half way in the pool and I think maybe it's too cold and I should wait for later in the day.  I follow my instinct to just get in and within a couple of minutes am a happy camper.  About 45 minutes later I am done and the contractor is here.  Perfect timing.  Contractor is a very verbose, 60 ish man who goes on and on about a pinched nerve in his back from an accident that is causing some numbness in his knee.  What can I say, I understand his frustration over his physical disablility.  Really I do understand and wonder how many people there are out there in this world who suffer daily b/c of health problems.

Today I am working on cleaning up some PTA stuff that I have to get to other people and working on a medical binder for myself.  The PTA stuff is now about done.  Thank you God for sending me sign after sign not to take the PTA President postion this year!  I am so glad I listened.  Wow, that would have been a nightmare as I would have had to resign.  Now it's on to the medical binder.  There is a lot of medical paperwork I have collected in the last few months with appts, tests and now dx.  Gotta get organized before it really gets out of control and I cannot find the important stuff.  Darn, hit my right elbow on the side of the desk and got scrape.  After a moment though I can only be grateful that I can actually feel every bit of the pain throbbing from it.  Life is good.

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