15 -- Progress by the Spoonful / MOTHERHOOD

July 27- August 4, 2018

We both felt such a boost from the consultation with Dr. Raja at Duke.  Suddenly, it felt like we were on a good path.  I now had a team of 3 great doctors, and I felt like I was in good hands. 

I could smile again. 

Monday, July 30, I had a follow-up appointment with my pulmonologist, Dr. Mayson.  My Pulmonary Function Test was greatly improved, thanks to having the Bi-Pap machine every night.  A test of my blood oxygen levels also showed that I was much better.  I took a stroll around the office, and the levels remained constant.  Dr. Mayson indicated that I could come off of the 24/7 oxygen.  Free of the cannula, free of the tubing, free of the tanks!  That was one of the best feelings in the world to me!

Thursday, August 2, I had a follow-up appointment with my PCP, Dr. Marom.  As always, he was quite attentive to both me and David.  We let him know how grateful we were for his help in making the diagnosis, staying on top of things for me, and getting the referral.  He was delighted at the report from Dr. Mayson’s office, and that I was no longer on oxygen.  We discussed the consultation with Dr. Raja at Duke and the plan of treatment she prescribed for me.  She had indicated that I would need monthly blood tests done through Dr. Marom’s office to monitor the effects the medications might have.  Since I am taking Prednisone, I also had a bone density scan.  Prolonged use of Prednisone can weaken the bones, so we needed a baseline of where I started. 

We stopped for lunch at Monterrey, a favorite restaurant.  It was our first “lunch date” in quite some time, and we both just felt happy! 

Ahhh the Prednisone was beginning to kick in, and I felt my strength slowly returning.  I was able to walk around the house more. 

One morning I surprised David by being able to shower and dress myself completely without any help, and I’ve continued being able to manage that.  I’ve done some of the laundry.  I’ve changed the bed linens.  I’ve even scooped the cat boxes a time or two.  I know it all sounds like baby steps.  But to me, it’s milestones, major progress. Victories!

Aliza and I enjoyed an outing to the nail salon one day – it felt good to get out and do something normal!  We stopped at the nursing home to visit David’s mother also.  I had not been able to visit her in several weeks, and she was happy to see me. 

Saturday – August 4 – I went for my first boat ride of the summer.  I had an absolute blast!  We rode all the way to the south dam and back.  It’s fun to see new construction, who has improved a dock, who has pretty landscaping.  The day was hot but there was a nice breeze as the pontoon floated over the water.  A summer storm blew in and I felt the rain on my face.  Bliss! 

 I live at Lake Wateree, and we usually are out on the boat in early spring.  By August, normally I have been on the boat many times.  I call this “the summer that wasn’t” because we’ve done none of our usual summertime activities.  I have not even been swimming, nor have the kayaks been taken out this year.  At this point, I am pinning hopes on next summer to try to make up for lost time.

I was able to go to church the following morning.  What a blessing to be embraced with love by my church family!  I’ve missed the fellowship and the comfort of worship service.  Sadly, I realized I can no longer sing – no breath support, and my voice wavers badly. 

When I got home, I was exhausted.  I felt like my arms and legs had suddenly turned to concrete.  I spent the afternoon sleeping. 

A friend referred me to the “Spoon Theory,” saying I would find it helpful.  Basically, the theory considers energy by the spoonful.  When one is healthy, they have unlimited spoons of energy for each day.  No problems!  But when dealing with an autoimmune disorder, your energy supply is limited to 12 spoons a day.  That’s all there is. There is no more on reserve.  You are done for the day.

Let’s say that showering, shampooing, and dressing requires three spoons.  Then preparing and eating breakfast requires three more spoons – that’s half of your energy reserves for the day.  You only have six spoons left for work, chores, other meals, shopping – whatever you have to try to do for the day.  Once your spoons are gone for the day, you are done.  There are no more spoons of energy available for your use.  It requires you to examine what you think you MUST do, what you think you CAN do, and make some choices. 

(For more information on The Spoon Theory, check out https://butyoudontlooksick.com.)

So now I am learning to take baby steps.  Not do more than I should.  Conserve my physical resources.  Be wise about using up my spoons of energy.  It’s a lot to manage, it’s a lot to think about.   It requires choices, prioritizing.  Planning ahead.  Not waiting until the last minute.   You just have to know your limitations, and learn to work around them.  

Otherwise, you might discover all your spoons are in the dishwasher and you are flat-out exhausted!

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Untethered Time Travel:  MOTHERHOOD

It is 1980, May 25 to be exact.  I am 23 years old.  It is late at night and I am in the hospital.  Just a couple of hours earlier, my daughter Amanda had made her entrance into the world.  I am over-the-moon joyful!  A nurse taps at my door, and brings the baby to me.  I’m kind of nervous, I’ve never been around babies much – but excited just the same.  It’s the first time the two of us – mother and daughter – have been alone together.  I feed her, cuddle her.  I unswaddle her and she gives one of those stretches only a baby can do – uncurling, arching her back, stretching out her little arms and legs.  I count all her toes and fingers, run my fingers through her dark hair – she had lots of dark hair!  She opens her eyes and looks up at me.  We have a conversation – ok, it is one-sided but she listened.  We talk about how excited her daddy and I are to have her with us, how much fun her grandparents are going to be, how she’s going to love the beach.  We make future plans – she’s going to be a good student and like school, she’s going to go to college, she will be a beautiful bride one day, and the fun we will have together planning her wedding….  The nurse comes back, tells me to get some rest, and takes Amanda back to the nursery.  I sleep.

It is 1983, July 10 to be exact.  I am 26 years old.  It is late at night and I am in the hospital.  A few hours earlier, my daughter Melody joined our family.  Again, I am over-the-moon joyful, but this time I’m not so nervous! A nurse taps at my door and brings my daughter to me.  It’s our first mother-daughter solo time.  Like her sister, she has a full head of hair.  I feed her, count her fingers and toes, cuddle her.  We have a conversation – I tell her how happy her daddy and I are to have her, and about her big sister, and how much fun they will have growing up together.  I tell her about her grandparents and that we will all go to the beach together soon.  We chat about the future, that she will like school, go to college, and be a beautiful bride one day and the fun we will have planning her wedding…. The nurse comes back, tells me to get some rest, and takes Melody back to the nursery.  I sleep.

It is 1987, December 30 to be exact. I am 31 years old.  It is late at night and I am in the hospital.  A few hours earlier, my son Andrew entered the world.  I’m not nervous at all now, but still every bit as over-the-moon joyful as I was with my daughters. A nurse taps at the door and enters with my son.  It’s our first mother-son alone time.  Like both sisters, he has lots of dark hair.  I feed him, count his fingers and toe,s and cuddle him.  We share a conversation, I tell him about his sisters and how excited they are to have a brother to play with!  I tell him about his grandparents, and that he will be getting a first cousin really soon, too.  We talk about his daddy’s tractors, and how much fun he will have learning to drive them.  We make future plans, that he will like school, go to college, be a handsome groom one day…. The nurse comes back, tells me to get some rest, and takes Andrew back to the nursery.  I sleep.

I sleep those nights, get re-energized.  Some of the things we talked about came true; some did not.  That’s just how life goes, and you just roll with it.  But as all mothers and fathers know, parenthood never rests!  You just learn to parcel out energy as best you can for the next 20 years or so!

Amanda, Melody, Me, and Andrew, in 2006.
We seriously need a new photo together!