17 -- I Get By With A Little Help / MOVING DAY

I get by with a Little Help --

August 10 - 21, 2018

Help in this case comes in many forms, including chemical, emotional, and personal.

The Cellcept finally arrived.  Designed for use mainly with transplant patients, this medication keeps the body from rejecting a newly transplanted organ.  In my case, it would re-vamp my immune system to keep it from attacking itself.  The first three months, my immunity will be quite compromised, and I will need to be careful about exposure to germs.  Then, gradually, my system should be “re-booted” in a kinder, gentler form that won’t try to kill itself.

Knowing that my immunity will be compromised throughout the fall, I am looking at ways to streamline some things, to avoid public and exposure to colds and other germs. I have a face mask, I also carry and use hand sanitizer.  I am trying to be selective about where I go.  For example, since I retired 9 years ago, my “gift” to myself has been pretty acrylic nails.  But I know that the nail salon tends to be quite crowded.  So, reluctantly, last week I had the acrylics removed.  For the next while I will just do my own “real” nails. 

I started with a half-dose of the medication the first week to see if my system would tolerate it.  I suffered no noticeable side effects and was able to transition to the full dose on schedule.  After about 3 weeks, I began to realize the Cellcept was working.  I began feeling more energetic.  I started setting small goals, a chore each day, to see what I could do.  It felt good to make some progress, to be able to contribute to the household again.  One day I realized I had talked plainly all day long – that was a huge boost!  Then a week (and counting!) without sounding like Elmer Fudd was MAJOR. 

I am pinning a lot of hope on this medication.  It is a chemical help that will hopefully guide me toward a “new normal” in a few months’ time. 

Good friends provide emotional help.  The day before I started the first dose of Cellcept, four friends and I met at Laura’s Tea Room for High Tea.  I just love going to High Tea at Laura’s!  It’s a fun experience with great food, and being surrounded by good friends like Aliza, Harriet, Jan, and Monica made it even better!  If you are ever in Ridgeway, SC, you owe it to yourself to make a reservation for High Tea!  http://laurastearoom.com/

We laughed and shared tea and lunch – it was a fun afternoon.  Afterwards, we went across the street to Cotton Yard Market to see what was new there.  Cotton Yard is a great consignment shop, the inventory changes constantly and you never know what kind of “treasures” you might find. 

I’m blessed with so many good friends.  It has never been made more evident than recently.   My friend Aliza just moved in with us to give David a chance to catch a break once in a while.  She’s been a great help and a lot of fun to hang out with. 

Otherwise --  I won’t call names because I don’t want to leave anyone out, but here are just a few of the kindnesses that have been extended to me and David.

• One friend stopped by to check on our cats while I was in the hospital, and vacuumed the house just because she saw it needed to be done.
• Fresh vegetables from a friend’s garden, oh so good!
• A jar of homemade pesto sauce, yummy!
• Pretty plants – I like houseplants and enjoy tending them.  They add a nice touch of nature to our home.
• A surprise visit from a friend I hadn’t seen in a couple of years, and she made me some of my favorite Ghanaian dishes:  jollof rice and fried plantains. 
  
  
  
  
• A box of Anthony Thomas sea salt caramel chocolates – decadent!
• Several “Women of Faith” dvds, loaned to me by a friend – I watched one segment a morning as a devotional for several weeks.  It was a great way to start each morning with a positive view.
• A soothing foot rub with lotion – two of my friends blessed me with that!
• A hand crocheted afghan in my favorite colors.
• A hummingbird feeder for my porch.
• A surprise birthday cake with candles and gifts. 
• Lots of cards, emails, calls, and letters, expressing support, love, and prayers.

A most personal help comes in the form of my husband and chief caregiver, David.  He has been nothing short of AMAZING.  When I was first diagnosed with Myasthenia Gravis, he spent days researching the disease and treatments.  He made notes, asked pertinent questions to the doctor.  He jumped in full-force in taking care of me, doling out my medications on schedule, monitoring my breathing when it got shallow, making sure I was eating healthy meals and staying hydrated, trying to keep my spirits upbeat and positive.  At first, he even had to help bathe and dress me – I couldn’t do the most basic tasks.  He also absorbed the chores that I had been doing.  He is hyper-vigilant, observant of every little thing that was going on with me.  Besides that, he also takes care of things with his mother, who is in a nearby nursing home. 

After several weeks of being “on-duty” 24/7, David hit a wall.  He had a couple of days that he just couldn’t move, couldn’t even get out of bed.  Depressed about the whole situation – who wouldn’t be? 

We both needed to grieve.  There’s a big sense of loss – loss of independence, loss of health, loss of freedom.  There’s also the Great Unknown Factor – we don’t know what is next, we don’t know what our “new normal” is going to look like.  We don’t know from one day to the next what I will feel like I can do.  It’s a difficult thing to try to plan ahead because we may have to change those plans at the last minute. 

He has never once complained or been anything less than fully supportive, all-in for taking care of me.  After a couple of days of hibernation, he began to rally again, and his happy, optimistic mood returned.  I sure was glad to see that beautiful smile on his face again.  But we BOTH realized the importance of HIS self-care, and are taking some steps to help him prevent burn-out.  We’ve always had a close relationship; this disease has brought us closer than before.  And that’s a GREAT thing.  But we also both need a little space, too.  He needs an “escape plan” every now and then, a chance to go do something FUN that is not related to MG or taking care of an ailing wife.  I once asked him if he had any idea how many guys would LOVE to have their wife tell them to go play golf or something! 

I will always be eternally grateful that David was in my life when this all crashed down.  I cannot imagine dealing with all of it without him. 

So, slowly but surely, I began to recover -- with lots of help from lots of sources.
"It takes a village..."

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Untethered Time Travel:  MOVING DAY

It is mid-November, 2003.  I am 47 years old. 

This is the day I move out of my home and into an apartment, leaving a marriage of 28 years.  I wrestled with the decision to leave or to stay for a long time, it seemed to be a like a leaden suitcase I dragged around. My friend Cathy helps me move, showing up early with a truck and trailer she borrowed from her dad.  The two of us quickly load the things I was taking – I’d actually been packing things away for months, no one noticed at the time.  Moving my piano is the toughest bit – Cathy is a tiny lady, and it takes all the strength we have to roll it out of the house and onto the trailer.  Believe it or not, the two of us manage to wrestle it onto the truck without breaking it or us.  The feat provides great comic relief, and we laugh when we accomplish the task. 

We unload my belongings at a rather tiny but bright apartment 10 miles away.  She helps me unload the truck, gives me a hug, and leaves me to start putting my new life together. 

My sister Becky stops by, looks around and asks, “Where’s your bed?”  I didn’t take one, I explain that I will buy an inflatable mattress to sleep on until I can get some bedroom furniture.  She nodded, looked around some more, then left.  About an hour later, she returns in a truck, bringing me a bed frame, mattress, springs, sheets, pillows, 
and some pots and pans.  
For once, I – the Chatty Sister – am speechless with gratitude.

Another friend, Bonnie, stops in with a few kitchen supplies:  some basic groceries, a casserole dish, some dish towels.  She leaves me with a big hug, a promise to visit,  and we both smile. 

Little gestures of love and support that mean the world to me. 

 Later, I crawl into that bed to sleep, expecting tears to fall.  But instead, when I pull the covers over me I feel a blanket of peace covering me.  For the first time in years, I feel serene.  I feel like a battle within has ended in a victory.  I feel like I have done the right thing.  My children are angry with me, and hurt.  They will remain that way for a while; it’s understandable.  I simply pray that night, and many nights to come, that they will eventually make sense of it all and forgive me, with time. Eventually they will come around.
I sleep deeply, soundly, peacefully.

The next morning I wake with a smile, and face
The Rest Of My Life with renewed purpose.