Sunday, May 31, 2009

Control, Communication & Coordination

This is how I feel on most days "half here".

I know most of us with disabilities deal with the issue of how much control we have lost over our lives. I do pretty well at containing my frustrations over the lack of control I have in my life these days. My husband had told me about one of his clients he had worked with who had MS and how he found the smallest things frustrating and he expected immediate action from his wife or children. One example is it drove him crazy to sit in his W/C and notice the mini blinds were raised unevenly or the slats weren't exactly in sink. Now to my husband at the time this seemed odd and interesting. He has a little more understanding at this time in his life I believe.

The one thing I have found that I do have control over is my hair. Well, as much control as one who can barely wash her hair because of her arms being so weak. Hair dryers and curling irons are a thing of the past for me. I was feeling frustrated and decided I had to have my hair cut on Thursday after my PT session. That is another story. I have gone from long to short so many times over the past 10 years I have lost count. So after PT I had my husband drive me to Wal-Mart to get my hair cut. I get into the shop and soon realize I am getting my hair cut by a new beautician right out of school. I tell her I want it short and her face turned pale. I assured her I knew what I wanted. Then she asked me to look at a book and give her an idea of what kind of cut I preferred. I chose a cut I liked and she quickly propped the book up on her counter as a guide. OMG.... I am getting a tiny bit nervous at this time but still determined. I could related to being new in a career right after graduating. She did offer to let the more experienced beautician do the cut but I just couldn't make her feel any more inadequate than she already felt. She tried to wash my hair and I was in too much pain after just going through PT that washing was out and I do so enjoy someone else washing my hair. On to the spray bottle we go. I could go on with every detail of this haircut but I will spare you. After she was finished with a little help from the other gal she asked me how I liked it. I had to be honest. I stated "I would tell you if I could see it" as she had my back toward the mirror. She was quite embarrassed and I tried to make light of it. Anyway my hair is short now. Does it look like the picture? Well not exactly but it looks decent. I did my best to make her feel as if she had done a marvelous job. The main point of this drawn out tale is that I took control, set my mind to something, wasn't going to let anyone stand in my way of having short hair on Thursday. Waa Hoo...

I am getting out of order with my 3 C's so please forgive me. During my initial PT visit I was used as a training tool to show someone the wonderful effects of a positive Romberg test. You know, feet together with eyes closed. I know what direction I fall in what direction do you fall in? I go back and to the right. My knees buckled this time. That is a new one for me. I am receiving PT for neck and back pain. So she put me through my paces, gave me my home exercise program and plans to see me two times a week until the insurance says enough I guess. I have had only 1 fall since Thursday. That was because I do the craziest things like stooping knowing my knees don't have the power to take me to the upright position. I just wanted a picture of a flower and ended up on my back in the yard. I tried to snap a couple of shots while down but it was just too windy to boot. No, I am not light as feather and was blown over. I wish. My dear hubby came to my rescue and assisted me to the standing position.

What an important word. Life is so dependant on open lines of communication. My husband usually grinds the coffee beans when getting groceries. Every great while when he has brought a new bag of coffee home, for a few days I can taste a hint of hazelnut from someone grinding their beans previously. I love it. I look so forward to a new bag of coffee. I guess I always comment on the flavor and my husband has been thinking that I was complaining so this week he bought the already ground stuff. He was shocked when I told him I loved it when he ground the beans and it had a hint of hazelnut. We continued to talk and I realized a few other things that I say that make him feel I am not happy or dissatisfied. We have to communicate because all these little mis-communications add up to larger problems. It was a very good thing he didn't grind the beans this week. It made us talk and listen to one another. Be thankful for the little things.

Tuesday, May 26, 2009

Baby Blog

I had written a blog called 'Pets, Pleasure & Health Benefits' April 21, 2009 which introduced you to all our pets except for Baby. For whatever reason, my computer illiteracy or technical skill I wasn't able to fit her picture in the blog. It is my pleasure to introduce Baby.
She is approximately 6 years old. She was born with the umbilical cord wrapped around her leg right above her foot. The lack of circulation to her foot caused the loss of her left hind foot.
My son wanted to name her Tripod which was definitely out. I wanted to name her Precious but my 2 year old granddaughter had a different idea. She said "no, her name is Baby."
She is a very small cat, a bob tail and is extremely attached to me. She sleeps either on my hip or beside me.
She may have only 3 feet but believe me this has not stopped her. She is by far the fastest of our four cats. She is special to our hearts.
Baby is definitely an example as to what animals and humans can overcome living with disabilities. Keep moving forward......

Monday, May 25, 2009

I Had the Greatest Idea For a Blog

Those of us with MS know how quickly we can have an idea or thought and poof, it disappears into some dark abyss of our brain. My great blog idea came this past Saturday as my husband and I were driving to my hometown to visit the resting place of my Mom, Dad and my older brother. All I can tell you is I remember the moment that in my mind I thought "that would be a great blog topic." It seems so bizarre to me that I can remember I had the thought but can't remember it. No one said a brain with MS was a joy to live with. I have been thinking for two days now and can recollect nothing. This is so irritating to me.

I shall let you know if it ever comes back to me and will quickly write it here. Yeah right if I am very lucky. I get so annoyed at people suggesting notebooks, post it notes and such to remember. I have notebooks that I have jotted things in for safe keeping and it takes me days to flip through the notebooks to find what I am looking for. Get real.

So in place of my brilliant blog I had intended to write I shall share with you some of the pictures I took while making our trip to and from the cemetary. I hope you enjoy them.

Yes, I did some advice on placing pictures in my blog's and yes I did make my husband take me off the beaten path to get the goat photo's. They were too adorable to pass up.

Friday, May 15, 2009

Trust and Toenail's


I decided instead of dwelling on the negative stuff happening in my life currently to think of happier times when I felt fulfilled and appreciated.
As I have mentioned previously my life prior to MS included being an R.N. I have many fond memories of my experiences and patients. I worked in the area of home health nursing the last five years of my nursing career. I found this to be most fulfilling.

Trust is a major component when developing any type of relationship and very important when developing a nurse/patient/family relationship. This was of utmost importance to me when beginning a new case.

As I was thinking about writing this blog one case in particular came to mind. To many it may seem so trivial and even disgusting. For me it was a major triumph.

A middle aged gentleman who I shall call Mr. R. was referred to home health after a hospitalization in which he was treated for chronic obstructive pulmonary disease and uncontrolled diabetes. I did my typical R.N. assessment and teaching at each visit. As nurses and diabetics know foot care is very important. On my first visit I noticed he wore cowboy boots. He always wore cowboy boots I soon found out. Mr. R. was cooperative and it took a little time to gain his trust.

The first time I mentioned the possibility of my assessing his feet I was met with a definite no. He was embarrassed to allow me to see his feet. Our rapport grew until one day at the end of my visit I mentioned foot care again. I informed him I could call prior to making my visit and give him time to soak his feet and I would do nail care for him. He was agreeable. I was amazed, thrilled and could barely contain myself until I left his home.

Yes, foot care and clipping toenails had me feeling on top of the world. I felt as if I had reached the top of Mount Everest. I had truly gained his trust. What a wonderful feeling.

The next visit I was welcomed by Mr. R. with his feet soaking in a basin of water. Mr. R. was unable to trim his own toenail's related to his breathing problems which prevented him from bending over to do his own foot care. I was faced with toenail's that were so long that they curled under. I sat in the floor, trimmed his nails and had the most wonderful conversation while doing so.

That was a wonderful day for me. Mr. R. was extremely appreciative.
Gaining someones trust is a wonderful feeling.

Moral of this story: Don't under estimate the power of toenail's.

Monday, May 4, 2009


Beauty??? I found it so ridiculous
recently when a very talented singer
made such an impression on the world.
Why was it so shocking that her voice
was so beautiful and pleasant to hear?
Are we so shallow as to think that only
the most physically beautiful people are
talented? When did inner beauty stop
having meaning? I seem to be full of
questions today.

The reason I am writing about this
today is that last night my husband and
I were watching a slide show of the
recent photo's I have taken and when it
came to the picture of the pile of junk I
used in a recent blog he said, "that is a
great picture" with much sarcasm. My
response was "it depends on how you
look at it."

My husband is going through an
extremely stressful time in his life
right now and it doesn't surprise me he
didn't see the beauty in the picture. It
does trouble me though that he is so
preoccupied and stressed that he made
such a quick judgement. I suppose we
are all guilty of making snap judgements
and forgetting to look for the beauty
that surrounds us.

I have been working very hard at
finding the beauty that surrounds me.
Being chronically ill has forced me to
slow down and appreciate all the little
things and look at things from various
perspectives. It may sound strange but
I am grateful for that.

These are just my thoughts at the


When your inner eyes open, you can find immense beauty hidden within the inconsequential details of daily life. When your inner ears open, you can hear the subtle, lovely music of the universe everywhere you go.
- Timothy Ray Miller