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 adventure...lol. 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

Friday, August 7, 2015

I'm stretched out on the bed with two dogs for company trying to recuperate from the 1400 plus mile trip home from Louisiana. The heat really took a lot out of me on the trip home but the third day it had gotten cooler as I drove north out of Ohio into Pennsylvania on to New York. I made it here by mid-afternoon and I turned it about 6:00 pm.  Just slept until I felt better.  It was nice and cool here last night but today I am still exhausted.

I had a helper come today to move the boxes from the shed into the garage.  He is a friend's son who was able to do the physical work and get everything tidied up for me so I wouldn't exhaust myself even more.

I have a doctors appointment shortly and I feel pretty bad so I don't know what he's going to say I overdid it obviously on the trip home.  Ttyl.

Tuesday, June 2, 2015

My Day Off and MS

It has been six weeks since I ran out of my multiple sclerosis (MS) meds; this is my third day back on Tecfidera.  It is like starting over...feeling sick, hot, itchy, nauseaus, and yet,  very relieved to be back on track.  It will take awhile but I k now once I get through this period of adjustment I will return to the level of functioning that I have grown accustomed to during the past year.

Today is my day off. I woke up feeling really, really tired they call that fatigued in MS vocabulary. Extreme fatique keeps me on the couch today. I get up and make my bed, walk my dog around the complex to then come back to stretch out on the couch…drift back sleep. I wake up find something to eat, make a few calls including one to one of my sons telling him I will send money on Friday. I pay an old bill, check my e-mail, return to the couch, and fall back to sleep. I wake up, get dressed, and go to work to get my time sheet…I need to fax it to the office so I will get paid this week. I make sure to mail a parcel off to my step daughter that she knows is coming. Noted foot drop several times as I was walking…almost tripping like that tells me I am tired. It also scares me because falling is something I can do quite easily…not good.

Remembered to stop at the drugstore to pick up some baby aspirin to help with the flushing from the Tecfidera, a prescription refill, and some snacks. Return home to change back into something comfortable just to stretch out on the couch, check my email, munch on some crunchy snacks, and fall asleep.

I wake up to walk the dog, check the temperature outside, come back the couch, and wait. Wait you say…for what? Wait to see if my body has recouped enough to permit me to get back on my feet. You see when you have MS and you learn that you have to listen to your body. My body will tell me when I have rested enough to prepare myself for a full day at work tomorrow. I love what I do…it is worth it .

Sunday, May 10, 2015

Another Quiet Day in the Creek

I am sitting here watching my little black dog sleep under the coffee table. (I do remember when he was little enough to stand up under it with room to spare...when I first got him.)

Laughing to myself...  He was so much fun to watch at the dog park this morning...lol.  He ran and ran and ran around with all the dogs that were there today.  He just loves the exercise and the other dogs...it is so good to see him get all the galloping around that he needs.  I visit with the other dog owners.

One of the ladies had a shirt that said:  

And I truly understand...this is too funny.  I love having a schipperke;  they need lots of exercise.  LOTS and LOTS...

It is so nice to have a quiet day here at the Creek.  I pushed all the worries away and place the people that I love safely in God's hands for safekeeping.  With a little one who has been so sick my heart is heavy...but I must honestly say that I am open to God's will whatever that may be.  To hear my son and daughter-in-law speak the words that give voice to their fear that she may not survive this hurts me to the bone.  Yet, this is proof that they too have gotten to the  place where they realize that God's will may be that very thing.  I sit here praying for her and her parents.  I know that I will make it through whatever God visits upon my head with my faith to shore me up.

So when I go to the dog park I know that I am trying to live in this moment enjoying the beauty of the normalcy no matter how simple.  This simple joy of watching dogs frolic in the sunshine across the green grass surely does carry me through another day.  

Sign me, Living Simply on the Road in Small Town America

Monday, April 27, 2015

The Dawson Family - A Little One and Chemotherapy

It has been a while since I have posted...things have changed in a not so pleasant way.  One of my grandchildren has a very serious medical problem that has taken a toll on our family.  This is perhaps the best way to explain: 

When I look at this photo it makes me cry because I see how much she has changed.  She now has difficulty walking, hearing, speaking, and seeing.  (When she speaks her speech is very, very difficult to understand...)I just want to put my arms around her to keep her safe... 

For more information on the disorders that have impacted our Melody and so many other little ones - Langerhans Cell Histiocytosis, diabetes insipidus, and neurodgeneration please follow these links: 

Two years has passed and today we prepare for the worst.

Angel and Art are trying to get prepared to go through the next round of chemotherapy the end of this month.  As parents of a child with Langerhans Cell Histiocytosis X they have watched the disease progression with an increasing sense of powerlessness.   I hear the worry in their voices when we speak each day.  Melody has changed so much since her initial diagnosis.   She is no longer the ray of sunshine that lit up our lives... she is very sick.

She has to endure another year of chemotherapy.   There are two lesions in her brainstem that did not respond to the first chemo treatments.  She is quite ill right now with fevers, nausea, and vomiting.  The chemo is taking a toll on the whole family with each and every treatment.  We all worry about her and seeing her like this is difficult.

Melody has a walker that she uses at school these days.   Her gait is very unsteady; she stumbles and falls quite easily.  She needs help to get around.  Her classmates are very supportive.  They are always careful not to bump into her.

Melody has a special tablet that speaks for her; her voice and speech have become very difficult to understand.  She has neuronal degeneration some of which came from the chemotherapy.

Melody does not understand what is happening to her...she asks her mother why her legs are so wobbly.  She gets frustrated when people don't understand her when she speaks.   Angel tries to gently explain the illness but in a way I am glad she does not (understand) how awful it can be.  It is something I struggle with daily...I wish there was something I could do to help.

Throughout all of this we have been glad for each and every day that Melody has been able to be happy.  I joke that as long as she is running around and yelling at her brothers she is good!  That has been my yardstick to personally gauge how she is doing.  These days she does not walk well and she does not run through the house.  I must admit that I am concerned that this is much worse than we ever knew it could be.
They have been treading water for the past two years.  The house is in need of  repairs that have been put on hold while they are taking care of the children, finding their way with Melody's health issues, and waiting for things to get better.  It is a very difficult time for the family.  I realize that there is not one thing that I can do...just pray.,