Wednesday, October 21, 2015

A Chance Meeting...That Touched Me

Today started out as just another day at work in a very busy neurodiagnostics lab trying to find machines to run tests, while waiting for the docs to finish rounding to free up equipment.  Calling the floors trying to find patients who are available for testing, trying to find doctors, residents, etc. are all part of our every day routine.

Later in the day I happened across two people in the hallways of my day who were typical...two married people, one being ill, one being supportive but as they began to speak I realized that we were living the same life, sharing the same grief, and bearing the same pain. 

Multiple sclerosis touches me in a way that's difficult to explain in my work setting.  I know part of me recognizes the clinical signs:  the struggle to walk, the cane, the staggering gait, the speech that becomes tangled, the handwriting deterioration, the fatigue...  Yet in the time that we are together we bonded on a level that brought us some comfort.

They shared themselves with me; I shared myself with them; we have MS.  I  have needles and pins in my neck, in my hands, my hands tremble, I trip over things that aren't there, and I understand the fatigue.  We connected in that moment, in that brief instant when we identify with each other because we do have that disease in common.

We are walking the same road.  We are on the same journey, on the same page, in the same book.  we have experienced the same grief, sadness,  anger,  acceptance...all the while moving forward in hopes that things will get better.

So when  the family member  questions me about my pain, my balance, my speech, my memory, my ability to work  I know they are hopeful.  I could see that they are further down the road than I in that the person who has MS in this couple is limited in ways that I have yet to encounter.  Will I be like that in a few years?

I know that they understand.  There are days when I wake up grateful just to know I can still swing my legs over the side of his bed and put my feet on the floor.  It means so much to be able to walk to the shower, brush my hair, brush my teeth, and just take care of myself without wishing  for it to be over. 

It is a gift to live one day at a time without the fear of being unable to care for myself.  There were times that I lived in dread of being unable to bathe myself or to feed myself.  How do you explain how important it is to be able to open a jar?  How do you say how awful it feels to walk unsteadily on my feet down the hall at work?  How do you pretend that when your speech comes out tangled up it does not embarrass you?  My hands don't work like they used to... my fingers don't have the strength they used to.  The fear that overwhelms me is the fear of the unknown.

When I meet these people we share things that we have experienced along the way; we talked about our mutual diagnosis.  We embraced the importance of maintaining as good a life as possible while limiting stress.  We chuckled over learning to pick and choose your battles to better manage the stress and frustration.  We set boundaries while accepting our limitations.

I stepped into their world today through that window of opportunity that permitted us to spend time joking and reminiscing about the way it is.  We agreed that people don't understand the things that we have experienced.  They would not appreciate the things that we no longer take for granted; the things that really brought us together to encourage each other...just weary travelers on the road.

I walked away knowing that they would go home; he would sit in this chair, and the dogs would sit in his lap.  His wife would bring him coffee while he would check and see what's on TV. They would pick up their lives where they left off yesterday.  You know I am sure that they will remember me and I will remember them...

Sometimes I just want to be home in my little house near the lake...just to be away from all the BS.  It would be so cozy to be away from pettiness, gossip, egos, and the politics of the work place.

It just undermines my efforts to be Have to laugh...Remember when the doctor told me to eliminate stress from my life and be happy.  It was her prescription for coping with MS...

Yesterday I found out that I do not have adequate health coverage to pay for the steroid treatments I had in August.  The medical bills just keep on coming.  More stress...I don't feel like I am getting ahead. 

Sign me, Wondering why I work some days...

Tuesday, October 6, 2015

Sunday CT.

Each day that I work I am filled with such a good feeling that I am being productive. I love what I do and it is a wonderful thing to get paid to do what you love.  The one aspect of my job that I love the most is being afforded the opportunity to keep learning new things.

Today is one of my days off so Little Dude and I are hanging out at home.  The weather has changed dramatically secondary to storms off the coast.  We have been spared the flooding here in CT but the temperature dropped quite a bit.  I have had the fireplace going the last two evenings; this gives me such comfort.  We had a fireplace growing up; the memories of that gives me as much warmth as the heat from the fire.

Still living simply here in Hamden, CT.  The chill in the air has encouraged me to make homemade soup again; today I will be finishing off the last of my yellow split pea and ham soup.  I have a smoked ham to cut up and put in freezer bags for the next few weeks.  My next soup is going to be Chicken Corn Chowder.  A friend of mine use to make it:  Amish Style Chicken Corn Soup

Sign me, Still Living Simply, M

Saturday, September 19, 2015

Well, being professional required that I honor my contract for 13 weeks.  Gathered up my things, uniforms, books, bed linens, one small black dog, and headed to the East Coast.  This assignment was only 7.5 hours from my little shanty and that was not too difficult.  This was a bit improvement unlike driving the 1500 miles home from the last

I have been working since the 8th of September at a hospital in a really large city.  The steroid treatments did help me and my strength has returned.  The crew here are very nice!  Still miss the lovely  people in New Orleans but I am getting used to the Northerners again.

I was able to bring a lot less this time and my car was not packed to the ceiling.  The dress code at the hospital requires just plain scrub uniforms; that means that I can use some of the scrubs that I have with me.  It was so nice to wear my turquoise scrub top and black scrub pants!  The bright color helps lifts my spirits.

The apartment is quite nice as well.  There is plenty of room for my little black dog and I.  We just got back from the dog park.  He really loves to gallop around at the park!  This one has a lot of shade trees; it is in a small wooded area but there is still some room to kick up his heels. There were only three other dogs this time.

Today, I will be doing laundry and washing up a few dishes.  I have ham and beans for my meals today.  There is still chili to put up in the freezer for later on.

Living simply is still possible in a big city.  I would never have thought it feasible but I still cook larger quantities and divide the food into portions to freeze for the next week or two.  I do pick up take out sometimes; that is something I don't do very much at home in the shanty.  My friends and I get together for a meal out sometimes but there is still a savings.  We tend to go to a particular restaurant on Wednesdays when the offer specials like 99 cent Beef on Weck sandwiches. On Thursday we go to another eatery that offers the best chicken wings for a special discount price.  It is a two-fer, the fellowship of friends and the good deal as well.

I have noticed that here in the big city there are other benefits.  I am only 14 minutes from work; this provides me a good savings on gas.  My housing and utilities are included as part of my job.  I only pay for my cable, phone, and internet bundle on a monthly basis. 

I really do not spend a lot of money from day to day. It helps me to keep track of what I do spend; it brings it home to me at the end of the week. 

This week I found a way to reconnect with a blogger from the UK.  She has been struggling with a medical situation that has been quite taxing for her and her family.  Her son has a traumatic brain injury that he acquired two years ago.  Just hearing what she has been going through gives me a wonderful point of reference for my own life.  It keeps me humble when it comes to my own health.  I will be keeping in contact with her.   God bless them and keep them safe. 

Anyway, time to chillax for a while.  Talk to you later.

Sign me, Living Simply Wherever I Am in America

Tuesday, August 25, 2015

Now the struggle begins...I am taking better care of myself by following doctor's orders. This involves being out of work, accepting my disability, and living on 75% less again.

I said something today that felt a little strange...I said I am retired. That simple statement quietly closed some sort of door in my reality. It is over...I felt tears in my eyes.

I have no nest egg to dip into. DH has been gone 1 1/2 years; we never had financial security. It took a great deal to move ahead alone knowing that I had nothing to show for 22 years.

Today, I took stock of things in between making and returning calls. I pulled some weeds to ground myself when things became overwhelming. This is my little corner of the world. It is my journeys end...

I am just back from visiting with my eldest son's family...lots of grandkids. Today I am paying for the I camped out in my son's SUV for the time I was there. So good to see the kids...I wish I could have stayed longer. I have medical appointments this week so I have to be home here for a while.

Just found out that my medical insurance does not cover MRIs or infusion treatments for my MS. And my response...OK. I obviously need to upgrade my coverage. Nothing I can do about it now. I am going to see my grandchildren in the morning. No sense crying over this....moving right along...

I am waiting to have another MRI to check on the progression of the MS. The neurologist has ordered steroid treatment for me three days this week as well. The heat just drains my energy...I just spoke with a friend who also has MS. His words were a comfort to me; he is struggling with the heat as well. I don't feel like the only one in this boat. He gave me hope...

I made it home to small town America. I did too much. The extreme exhaustion will take awhile to resolve; I am reminded once again that I have multiple sclerosis. I have to see the neurologist this week to see what I need to do to get through this MS relapse. Glad I am home...

I am feeling pretty cruddy today. The temperature is supposed to be in the 70s but the humidity is killer. I am trying to rest up so I can head home. 1274 miles to my BFFs house. 1400 miles to my front door. Keep me in your prayers. Nana M