From a 14 Year Old's Point of View.

My oldest son came home from school on Wednesday afternoon with note from school. He won "Honorable Mention" in our local Rotary Club's essay contest. The topic was "Laws of Life". I asked him if I could read his paper and he said he did not have it and then I asked what he wrote about and he told me it was about me and my MS. He brought the paper home today and it is below.

1/22/09 Stop and Smell the Roses

It was around late October last year when my mother found out she had Multiple Sclerosis. It impacted my life greatly. First finding out, I had no clue about the seriousness of the symptoms. It made me quit worrying about the things I don't have and appreciate the things I already have. Upon finding this out I realized I just needed to stop and smell the roses.


This disease has many symptoms that affect her day-to-day life style. One symptom that affects her is poor balance. She always has a difficult time walking. I used to always think she just walked in a weird way but the MS causes her to walk in a different way. It also makes her dizzy and she often stumbles over the smallest of things. Another symptom is weakness. She is very clumsy and she has a tendency to drop things. When my mother walks, she often drags her leg, she cannot control it when she does this. One of the last main symptoms that affects her is her memory. She has a difficult time remembering things and usually needs to hear something more than once. She also senses that she is thinking in a fog.


Ever sense my mother was diagnosed with Multiple Sclerosis, I have tried my best to help her in every way I can. I usually let her hold on to me when we are walking into the store or up some stairs so she doesn't lose her balance and fall. My mom recently started using a cane to get around because she does not want to embarrass me by holding on to my arm. She can be so stubborn some times but I still love her.


Now more than ever, if I tell my mom something I need to write it down for her or tell her two or three times to make sure she doesn't forget. This gets very aggravating for me but I just have to remind myself of the symptoms she has. It seems like every time we go somewhere in public someone just has to stare at her. She is perfectly fine and has nothing wrong. So what if she drags her leg or sometimes forgets things, normal people forget things and drag their legs also. They act like they have never seen it before.


Although my mom may drag her leg and forget some or most of the things I tell her unless I write it down, I still love her no matter what. She is no different to me now than she was before she was diagnosed with Multiple Sclerosis. This has impacted my life in a tremendous way. Either way mom is still mom and people need to realize what they have and just take time to Stop and Smell the Roses.

Pity Party:

I was in the car by myself and had a pity party. The guest list included, Me, Myself and I, and we were all in rare form. I was happy that Senators Owens and Powell from South Carolina were not there to witness my party. These two crusty old men would have taken me outback to the woodshed for a much needed Attitude Adjustment. I had no one to blame but myself and no one could fix it but me. You all know me, I will start at the beginning and take the long way around talking to get you back to this place. Just know that during this most recent adventure, I passed many different levels of emotions that ended in shame.

I was going out of town this past weekend to help my better half pack up and empty a space that we have recently rented out to others. I thought I was doing so much better with my memory/cognitive skills that maybe I was getting a little lazy about it. While packing up the car for the drive to meet him, I remembered that I was not supposed to bring the coffee table we had sitting in the garage. I very strategically took some meat out of two different freezers and packed it in one cooler to take with me. When I spoke with my husband that morning, I was proud to tell him that I had remembered the meat and it was in a cooler beside the car so I would not forget it. He told me that he had already told me once that we were not going to grill the meet and he needed me to leave it at home. I clearly did not remember that conversation but shrugged it off, no harm done.

During the next two days of packing various items I had to constantly ask him the same question more than once on different topics. I tried to tell myself that I was confused because we were talking about twin beds and full beds and doing one thing with the twin and something different with the full. It sounded like a good excuse to me but by the second day I was getting frustrated at myself for having to constantly ask him to repeat himself to me. In my mind, I was thinking about how way back when I was in kindergarten the teachers would use a straight pin to attach a note to your shirt so your mom would get it when you got home from school. Maybe I need to pin notes to myself so I would not forget.

Here is the event that put me over the edge on my path to self pity for a humiliating 2 hour ride home. After we went to a lunch where my youngest son held my phone, I realized after he left with his grandmother, I had neglected to ask for my phone back. My husband called and said they were not too far up the road, and I said I would meet them at Wal-Mart . I took off to sit in the parking lot at Wal-Mart to wait for the phone and a second chance to force my youngest to hug me yet again. After waiting for 45 minutes, I decided that something was wrong with the plan and I should call. Guess what……………..there are not many pay phones these days and more important, the ones that are available do not work but take the coins from your fingertips.

I started driving towards home, and after 3 more stops, was unuccessfull finding a payphone. My fourth stop at a grocery store led me to a young girl who handed me her cell phone and I called my husband. He asked where I was. After I told him I waited for 45 minutes and they never showed up, he told me that he had my phone. They had come back to our condo to bring the phone and he thought I was going downstairs. He had told me before I left that they were still close by and coming back but I had it fixed in my head to go meet them at Wal-Mart. A major misunderstanding on MY part.

I thanked the sweet girl at the grocery store and went out to my car and started crying. I was wondering if I was losing my mind. I was worried that next time I might forget or misunderstand something that would cause someone pain or even hurt them physically. I was imagining that I might forget and leave one of my children somewhere or not remember who I was. This was all during the self-pity phase when I was thinking to myself that these memory lapses could get bad, very bad if I let them. Where would I be in five years at this rate?

Paranoia hit next. Where was everyone in my family? Was I supposed to be anywhere soon to meet someone? What else had I forgotten? I thought back and I could remember my childhood and college years and most things that I am sure I was supposed to retain from the first 43 years of my life. Short term memory seemed to be my BIG problem. Panic hit a little on top of paranoia to make a nice little cocktail of anxiety surge through my chest. Now I was not only losing my mind, but hyperventilating on top of that. Would I even remember whom I would need to call, or their number, if I had to pull over. Now back to one of the original problems, I DON’T HAVE A PHONE WITH ME. I needed to just get home, would I remember the way.

After I passed the half way mark, I started to calm down a little bit and started making notes on the pad of paper I carry in the car. The list included things I needed to do when I got home, things to remember for the upcoming week, research to do on memory vitamins and various pages of other “stuff”. My handwriting has never been very graceful or elegant and since the MS has started affecting my right hand, it has increasingly become worse. Trying to read a pad of paper written in a car while driving with a combination of messy writing and a wet marks is difficult sometimes. The therapeutic task of writing did its trick and started to calm me down and I started to think back over the whole weekend from a different and calmer point of view.

The next emotion I faced was shame. How could I have felt sorry for myself? What a waste of my time! I realized that I let my embarrassment and pride overrule my sense of balance. While I am seeing losses in some areas of my mobility and thought processes, I know deep down in my heart that I am a person who has many blessings. I can’t lose sight of those blessings and I can and will find a way to overcome these memory problems. By the time I got home I had a plan in place and I asked my husband if he would help me. I am going to try and repeat back to him and others what I hear them say to me so that I know we are both understanding the same thing. I am sure that when my children return from spring break they will think I have lost yet another marble when I start repeating what they have just said to me.

Attitude is everything and I will try to keep self-pity at bay. It is much more fun to be happy. I really do not want a trip to the woodshed with Senators Owens and Powell, so positive attitude for me.

Joy

To Medicate or Not To Medicate

A friend told me to read some post on the facebook multiple sclerosis board. One person was saying that a certain kind of treatment was wrong. Lots of people wrote back and said that each of us have to do what is right for ourselves and let others make their own decisions.

I am being proactive and attacking my MS in a way that suits me. I will gain power from my efforts because I believe it is best for me. While I think the things I am doing are very worthwhile, I also realize that every MS patient reacts in different ways to treatments. It is up to all patients to do research and visit with their chosen healthcare provider ready with questions and knowledge of treatments that are available.

There are many different forms of treatments for Multiple Sclerosis from Homeopathic or medications and many other forms and combinations of treatments in-between. I have made a decision based on my needs, symptoms and family input. I will let others know how well my chosen treatment is working for me, but will always encourage others to become familiar with everything available.

No one should be criticized for choosing one path over another. People who do not know about Multiple Sclerosis, the symptoms and how many of the symptoms are invisible, do not need to suggest things for me to try. While I am sure that these comments are meant with the best of intentions, I am sure that if this “juice” or that “pill” really worked that all the MS publications would be shouting it from the roof tops. Not to mention that my Doctor, Chiropractor, or Physical Therapist would probably tell me to go and get “it” NOW.

I have said it before and will say it again; I am at peace with my diagnosis. I do not know the ultimate plan or where the journey or path will end but I am going to have a darn good time getting there. I will see all of you at the checkered line when we all get there, you will hear me coming, I will be the one laughing and sliding in sideways.

Sunny side up!

Joy