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.,


Saturday, October 4, 2014

Moving forward...

I must have had some intuition that something was wrong when I was yearning for the soothing comfort of my simple life.  The fatigue was so overwhelming.  Maybe some part of my body was aching for rest or did I sense what was coming?

The last week has been a blur of ER visits, pain, nurses, pain, antibiotics, more pain, scans, pain, surgery, less pain, med-surgical staff, and physicians as I made my way through a very serious health crisis. Did I mention pain? 

I find myself sitting here in my trailer resting and reflecting over the whole experience.  My schipperke pup, Little Dude, is stretched out on the floor watching me as I type.  He found it...brushing up against my chest when he jumped in my lap.  I felt nothing until then.

Did it really happen?  It did.

No work.  No lifting.  Do not get the wound wet...no showers.  Take it easy.  It will heal from the inside out.  Don't overdo it.  Nurses will be coming daily to change the dressing and repack the wound.  It is not breast cancer...there was no malignancy.  Does it hurt?  Is there any increase in the amount of drainage? Do you have a fever?  Did you say this is gross? You are so funny...lol. 

Lets face it, an open hole in my chest is gross, right?  The sensation of someone pulling a packing out of my breast is gross.  The bubbly foam of hydrogen peroxide clearing out debris is not ideal but I can handle it much better than the packing activity.  The feeling of someone pushing a packing back into the wound is gross.  Wait, on a scale of 1 to 10...this is not even a 2.  When the doctors were pressing on my breast I thought I was going to pass out...this is proof that I am on the upswing.  It is getting better. 

I sure do appreciate the peace and quiet.  I need it...  God, this is too real.  Can I wake up now?

Sign me, Resting and Recuperating in Small Town America (Florida), M

Wednesday, September 24, 2014

I found a set of links that I would like to share.  Living simply may mean living homeless to some people.  This is really interesting: 




These articles are a look into how the other half lives. 

Sign me, shopping for an RV in small town America, M