Friday, June 24, 2016

My MS Update June 2016

Today I thought I would reach out and give you, my loyal readers and update on my health.  I know I haven't posted in a few months.  I am sorry for this as I know with reading blogs' we often like to have regular updates to read.

This picture was to record today's MS Physiotherapy.  I walked 3.75 miles this morning in a hour and a half. A couple years ago, I managed to walk this in an hour.  I am getting there.  Early mornings, and determination, I know I will get there again.

I have been really focusing on my health, physically and mentally.  With spring comes flare ups with my Multiple Sclerosis and some season changes are worse for me then others. I have been reassured by the results of my recent MRI, that my MS is not progressing. I have no changes in this MRI or new damage done since my previous MRI a year ago. This is great news! I am happy to share this with you as it is great news with all the symptoms and what seems as flare ups I have had this last year.  Once again conforming that they are; Pseudo-Relapses that I have been experiencing. Seems just as a relapse only no damage is being done as my Copaxzone daily injections are working. Preventing my immune system from removing the myelin coating on my nerves.

Even though I am experiencing; Extreme Emotions,  Unitary Urgency, face twitching, memory issues, fatigue, difficulty sleeping and a few other things.  I know these will eventually ease off and go away as the season of summer comes to an end.  Mean time I will keep walking as much as I can. Stay cool in my pool or cold showers, try and nap when needed.  I will continue to concentrate on nutrition and hydrate my body with lots of water daily.

Some of you know, MS is not an easy disease to live with.  I believe we have to keep a positive outlook on our life to keep it managed. We all have bad days with or without illness in our lives.  I just try not to make it out to be worse then it is.  I try not to focus on the negative things it has done to me or taken from me...... as it will only make things harder to deal with.

Keep cool and make the best out of each day. Until next time. Take care of yourself!
Let me know how you are doing this summer....
Looking forward in hearing from you.

Friday, March 11, 2016

When others make you feel down and depressed.

The past few days the sun has been shining and the water has been running. My father always said, just as the picture above. "When the snowbanks are looking dirty you know that spring is near."

Today's lack of sunshine adding the dullness floating in the air this time of year can leave the normal uplifted spirited person feeling, well, down. When I look back on the emotional week I have had, waking with being back to cooler temperatures, it is no wonder I feel so down today. It does make sense.

This is the time we do feel depressed from the long cold winter months, spring weather showing up and disappearing, as we long for warmer weather and the sun bright in the sky.  

As I sit and ponder the events over the past week.  I ask myself;"Why do I let someone else's actions towards me due to their own insecurity, affect me?  

I feel and see they are only feeling, loss of control of their life. Then lashing out at me as I am the closest and easiest outlet for their frustration.  Trying to grab at straws to regain control.  Control, over something they can not control, as they can only control their own actions and not of others around them.  But leaving me asking myself; "Why do I let it affect my own enjoyment of my life? It really is not me that they are upset and mad at." 

Because I feel, that I try and treat others as best as I know how to with what I know. I try and not take my frustrations out on others and internally figure out how I can deal with what has been done to me. Yes, I may talk to a trusting friend and try and figure out what has caused such events.  But to put blame on another? Not! I am thinking it all comes down to we are all at different places in life. Many are still learning while they are only our past lessons of our own life.  

"When you know better you do better".  

We all just need to believe in ourselves and know that there are better days ahead. We must forgive and trust the process and know that they too are on their own journey.  Forgive and move on.  Knowing others sometimes hurt others only to make themselves feel better.  They are only wanting someone else to also feel their pain and frustration they are experiencing. Not even realizing they are only causing more hurt and pain to others and themselves.

As I write, I recall the teachings of Lisa A Romano. Thinking how she has opened my mind to see things in a different way as to what I grew up with. 

At first, I blamed myself. Now I see that Lisas' words in her videoes' have stopped me of my old thinking and opened my heart and mind even wider. Her words are often spoken. " It is not your fault dear one. It is not you, dear one, it is is your programming".

I feel much relief and a calmness over me now.  Hoping one day this person will find their own peace awaking a new knowledge that will give them peace too. the knowledge that they can not control others but only themselves.

Sometimes we look at our life and know all the things we dislike about it, but never really focusing on the things we want in our lives. 

I have learned when others make you feel down and depressed, it is not you.  It is a reflection of how they see themselves and do not know how to deal with it themselves. What opened the door to me seeing things with way was Lisas' first book she wrote. The Road Back to Me.  You can get it on Amazon or in Itunes on audio. 

Please let me know down bellow how you calm yourself when you are feeling down about how others have miss treated you. I would love to hear from you.

Thursday, March 10, 2016

WW Week 8 Update with MS

Well, I thought I would give you and update on my Weight Watchers weight loss journey as I have completed week 8. I am down a total of 8lbs. I have been finding that this program is all coming back to me and I feel I am just back in the saddle, sort of speak. This is not my first time joining after all.  I have been working with the MS Monster within as I also have had to manage a little stress last week that hit me from behind.

I have to admit to being a "Scale Aholic".  You know those annoying people who have to step on the bathroom scale every morning after they do their morning visit to the loo? Yes, I am one of those, ones who registers and plans out the days eating by if I have gained or lost any weight. Yes, while this stress hit I gained weight but, am very pleased I managed to get it off before my weigh in yesterday. Wednesday. I usually weigh-in in the morning on my scale and in the evening at the meeting scale, which is always the same so far. However, yesterday we have been experiencing very mild temperatures and has created Fogg from the snow melting so fast, so I did not attend my evening meeting last night. I do not feel comfortable traveling in foggy weather when you can hardly see 3 feet in front of you.

Yesterday I did manage to reach my Fitbit step goal and I will today as well.  I know this as I walked on my treadmill reaching almost 3 miles.  I can feel I have over did myself and have decided to cancel going uptown this afternoon.  

I would love to hear if you too are using WW, Weight Watchers, as your way of losing weight.  I would love to hear how your journey is going as well.

Wednesday, February 24, 2016

MS'ers Weight Loss Journey with Weight Watchers Week 6

Yes, I joined Weight Watchers online six weeks ago now. I joined online to assist in my weight loss journey. I find it is much more difficult to loose weight while I fight the MS Monster within. Looking back on my past, in my younger years in school at track meets and such. It is easy to recall how I struggled physically with exercise or activity. I thought I was just out of shape or over weight at the time. Now I realize that the struggle and silent fight to stop my activity inside my body was everything but normal. As it seems the MS Monster, doesn't like my body being stronger than him. Suprising he knows the fight is on to get him in that box and lock him in there! 

Online is great now with the connect support you can get from others. It isn't the same as attending meetings in person. So I decided to attend the local meetings 3 weeks ago. Wednesday is our weigh in day and there is no meeting this week, being tonight. So weighed in on my scale which gives the same results. I am down 5.1 lbs. in a week. Thinking it's more due to having strep throat but I'll take it anyway. Total weight lost is 8.9 lbs. Yay me! ⭐️

Thursday, February 11, 2016

3 Reasons why I have a hard time in public with MS

MS and Living Life
Hey, There!

Last night I went to my first WW, (Weight Watchers) meeting in like two years. I was very apprehensive to go.  I had mixed feelings while I was on this twenty-minute drive.  I was feeling very unsure and may be experiencing a little anxiety.  

First of all, that I had to go to a "meeting" just to get this weight off that I gained due to my trial medication for depression. I had been going to Weight Watchers off and on since 2004.  Feeling disappointed in myself that I couldn't lose this extra weight on my own.  In turn, telling myself that; "I shouldn't be so hard on myself. That going to the meetings in the past gave me friendly support from others who want to lose as well. The local meetings did actually help keep me more accountable. 

Secondly, I knew there was going to be a new leader and well as new members. ---- New members? ------ Thinking, that there will probably people going that I had known from the past years. ------ Yes, maybe a little anxiety was going on? Living in a small northern Ontario community, everyone knows everyone. 

Let me explain why I was getting freaked out a little. You see, since my last major relapse. In which I got my original diagnosis of MS, this Monster had also taken parts of my memory.  In scenarios like these, it takes remembering who people are or were. I always see the face, but to remember who and where they lived? How were they apart of my life in the past? Well, the MS Monster has taken a big part of that memory from me. Remembering things that took place, people I once knew and sadly, sometimes even people I have recently met.

Sometimes, I do feel comfortable saying; "I am sorry, but how is it that I know you?  I recognize you. However, I just can't place how I know you?" Which sometimes in these cases, the situation goes downhill quickly.  As the person has no idea that I have progressed in any illness and becomes questionable. You can see the disappointment as  they showing discussed in their facial expressions. Often not even realizing it.  All due to the fact I can't remember them and I should. Oftentimes they quickly expose our dealings and that they were a major client of our families business in the distant or recent past. Sometimes it hearing their story tweaks my memory.

Ninety-five percent of the time I feel embarrassed and upset because of their unknown reaction I had seen.  Not only with myself not being able to remember, but their own reaction of feeling unimportant.  Then I explain why I don't remember them and apologize to sooth their quick judgment. 

Trying to ease the situation, their reaction is to brush it off as though they too have memory issues and that it is all a part of old age. Then they openly explain how we know each other. I have learned that when this happens it is their lack of knowledge of the disease itself and see that they are the one feeling bad. They by saying this are only trying to make me feel better about the whole situation.  Making others feel bad is never my intention at all.  These moments are the ones that make me feel most uncomfortable with having this MS Monster living within me. Other times introductions and meetings go smoothly without incident which comes to such a big relief to me.

Thirdly, when I am out there are when a few people find out what it is that I have they automatically think of someone they know who has Multiple Sclerosis. Then quickly spits out negative comments. I am now aware that they think they are trying to make me understand that they know what it is that I am going through.  Little known to them, that they are only just hurtful and negative comments.   Saying things you should never say to someone with MS.

Comments like: 
  • "But you look so good, how can you be sick?"
  • "You're not in a wheelchair or have a cane yet, you are doing so good!"
  • "I know someone with that and they are; in a wheelchair now, can't talk, and now needs extra care." 
  • "So and so died from MS."
  •  "My nabour has that and she now can't drive" or "lost her job because she can't work." 
  • "All you need to do is eat better and exercise"

  • "Did you hear about "so and so" they were cured. Why don't you try what they did?"

Knowing their intentions are not meant to be, curl or mean.  However, each case of MS is different.  I understand that they many are truly trying to be nice. Only trying to make me feel that they understand what I am going through and not alone. Speaking for many others with MS these comments are actually offensive. 

I use these moments to try and educate others on what Multiple Sclerosis is and how far they have come with gaining knowledge about it.  How close they have moved toward finding a cure for Multiple Sclerosis.  I also reassure them that those of us that are our own advocates of MS are on top of the research that is happening at any moment of any time.  Most of us who have MS, know more about what we have, how to manage it and what new treatments have come available then our own family doctors.  Keep in mind.  Our family doctors don't just specialize in one illness but help treat many illnesses.  I am truly grateful for my family doctor and her staff, as they are always there for me and are quick to help when I am having MS issues or a flare-up.

In conclusion to my first meeting. I feel that it turned out well.  We had enough people join that our meetings could run until the middle of April.  Sad that I had to pay for my meeting membership even though I had an online membership.  I did see a couple women that I do know and hadn't seen in a long time. I also got to meet our new leader, who seems quite nice and positive. She is more than willing to answer questions and help us in any way. I am looking forward to our next meeting in a week. 

Wednesday, February 3, 2016

MS is a life changer!

Today, I start and write with a heavy heart. Not because I have lost a loved one or someone dear to me.  But just realizing myself, of how much Multiple Sclerosis has quietly taken from me.  Their is so many things I want to do, so many things I use to enjoy and took for granted.  

"Don't take any day for granted. "

I look back and I see how I lived life to the fullest.  I loved helping everyone and always tried to make someone smile. I put all I had into what I was doing whether it was taking the kids to do something or helping someone out with something. I put all I had into my career no matter what I was doing at the time. 

"Give it your best or don't do it at all"

Now, that was a place I never gave up on either.  I did so many things I enjoyed. Reflexology, Computer Training, Web Design, Bookkeeping and then I got my AZ drivers license to not only do the office work of our construction company, but I wanted out in the field, out with our customers. I had also gained my the Heavy Equipment Licenses I needed to qualify to work with these machines but, also get them too and from the jobs. I loved entertaining.  We would have BBQ’s and pool parties, evening campfires in the summer. Our friends and their kids would be over and our kids with their friends.  It was like Grand Central Station pretty much most of the time. I look back and see how happy I was and what a great life I had been living.

"Don't look back, you can't go back there. Look ahead!"

Lately, this dam disease has had me really thinking about what it has taken from me. From our family.  Now thinking, I did all of those things without even thinking about how I would get it done, I just did it. Never, thinking about how I would feel while doing it. If I could even follow it through with out being drained. Even possibly pushing myself to of total exhaustion. Ending up sleeping for days or even having a flare up that might leave me disabled in some way. Oh, how my life has changed yes.

Some of our stuff

Today, I experienced my family stepping in changing plans, without me. Plans that I had been looking forward too for days and was so excited. These change in plans, where quick and took me off guard.  My emotions quickly grew within me, as I broke down and cried as I tried explaining to my husband, that they where making me feel that they felt I was incapable and inadequate, as tears ran down my cheeks like a river.

He reassured me that was the last thing they wanted me to feel. That they see what I can handle and what I can’t.  He reassured me, they where under unforeseen circumstances that came up for them, that they where only worried for my health and didn’t want my health to worsen. 

I do however, realized how I need to sometimes,  swallow my pride and except that I have to live with this illness.  That they too are living with this illness. We are learning that, I can not fight it. 

With this, I realize that my family is actually growing up and are only trying to help me out just as I want to help them. This makes me see that the most fulfilling job was raising my children. I must have done something right. Why? Because I see that they know sometimes they now have to also look out for me, just as I have them all these years.

I don’t look for pity, nor for others to feel sorry for me and my family, as we live with this disease. I just am trying to share so others grow awareness of that his is an invisible  disease. For some it can be managed. That is exactly what I am trying to do.

Got this somewhere off the Internet It was on my computer.

Have you something that has changed your life? Let me know in the comments in how you deal with these changes.  I would like to hear from you.

Tuesday, February 2, 2016

MS Has Made Me

Today I am thankful for my family I have and have put here.....

Let us just say; My in home and out of house ...... family. 

At this time, I have a husband of 28 years, whom I love dearly. 

One; A 25 young business family man, with a thriving, cute, energetic little boy bundle, I call; "Nannas' Super Star".  Who looks just like his Dad.  He's carefree and delightful as both his parents. 

Two; A 22 year old daughter and her mate, with a fur baby. He is not pro-ceived as, "just a dog!" . Having a personality of a well behaved child.

Third; A 21 year old young family man/ volunteer fireman,  of a beautiful, smart young girl,  who is, "Nanna's Princes". Caring and comical like her father and with a cuteness if her mother. 

I can not say enough of how much I love and am proud I am of them all.

They all work so  hard to make ends meet, just as many of your families do. I can not explain how much they  mean to me. But just to say, they are my life, is an understatement. 

I ; wake, breathe eat and thrive from the presents of each of them and their family. They give me the reason I breathe and keep up the fight, not giving up or give in to my daily struggles. Some days I pop in to see them, just to re-energize my being. 

 I can't phrase and give them enough credit for the lives they have created for themselves as well as those who love them and enjoy their presence. I am so proud of not only who they have grown to become but,  the lives they have created with their families  and friends. 

I know I am their mother and I reserve the right to brag about them. You know, if it was not for them,  I don't know I would not be who and where I am today, mentally and physically. 

My husband who thanks me  often and keeps reminding me, that it is I, who keeps our family together.... though tears and laughter. Good times and bad.

Please understand, having a chronic illness like Multiple Sclerosis, it has changed our lives. Once so young and now living their own journey. They are all that I have to hold on to, who give me hope for my future. 

They are who push me forward each  and everyday, through thick and thin. They are always here for me when I need  hand, or just to let me know they are thinking of me throughout their busy lives. 

This is my family. I am so proud and thankful to be gifted to have them in my life. MS has made me slow down, enjoy the small things in life and cherish those around me. That includes, all of my family.

Monday, January 25, 2016

A gift of walking in the northern Moon light

MS and Living Life

Walking alone this evening allowed me to take in my surroundings.  The moon is shining bright, the snow is glittering, dancing around the shadows of its trees within the picture perfect beautiful landscape before me.

As I breathe, I can feel a fresh bite from the cool air, enters my lungs.  I can not only see the stress exist my body with each breath but, I feel it as my lungs and shoulders becoming lighter with each exhale.

Theres is a  sound of the loud crunch from the cold snow with each step I take, was like music to my ears. Which brought a feeling of peacefulness. A peacefulness, leaving me feeling as though I was in a presence of many Angels surrounding me.

An experience that made me feel and think; "What a beautiful night. What a gift it is to able to experience such beauty! I am so thankful to be able to enjoy this moment on this evening, while living in Northern Ontario." What a gift! What an experience!

People we live in a rushed world.  Don't forget to stop, slow down and enjoy these small precious moments we are given in our lives.

Wishing you all the best,

Thursday, January 7, 2016

The return to the Journey to better Health with MS, Part 1

Today's MS therapy  

I swear I have a love hate relationship with this hill!

Today I decided to get off the treadmill and get out side. I pushed myself to walk past my usual stopping point of two miles. The weather and temperature was just right.  I reached the dreaded hill. I kept telling myself that I could make it to the top as I concentrated the the view of the top of the huge hill was approaching. As I reached the top without stopping I jumped in the air and said; "Yes!" Not caring if the workers could see me at the bottom working on the lines on the telephone poles. All I knew is, that I didn't stop until I got there. I had pushed myself like I had use too. This was a type of struggle that I look at as, MS muscle conditioning.  A very proud moment at this stage.

As I reached home, I could feel the burning in my thighs.  This type of pain was something I had not felt in a long time. Making me question myself,  if I did the right thing by going so far? As well as asking myself why I pushed so far in such loose snow?

I was thinking in the back of my mind, by pushing myself like this, it was how I gained strength in the past. Knowing that there would be pain that came with this kind of therapy, I knew gaining strength and endurance of walking was something that would out weigh the pain I was feeling, by far.

By MS and Living Life

As I am now trying to get warm and get rid of this chill of the damp air drinking my recovery drink to help re-nourish my muscles, remembering back a short time ago, how much easier it was a few years back when it was a daily routine I had. I will not give up on this journey of regaining my strength in my legs. This walk use to take me an hour, today it took me a hour and a half. Most important thing is I did it and I made it home. 

In conclusion of today's MS therapy of walking, I am left with mixed feelings. I am happy I managed to reach my goal of the top of the hill, completing a three mile walk. My Fitbit saying almost four miles? 

I am thinking due to the light loose snow in my steps, that possibly, I took more steps, (shorter steps), which made it register to be further with more distance? I also know I have done this in less time in the past but, I am proud that I just managed to get it done and make it home safe! 

This is a massive gain in my therapy for endurance for my leg muscles.  As I want to stop having to set every where we go, while others are standing. Yes my legs hurt but I still thrive to be as normal as I once was.  This decease, creates new normals for people.  I refuse to give up on this.  My goal is to be able to walk at lest 3 miles each day. I will not give in.

Wishing you all the best in good health and happiness. 
MS and Living Life

Saturday, January 2, 2016

Desires for 2016; Resolutions.

Well, I am not one to make goals or New Year Resolutions. They always seem to not workout the way I want them too. So, I look at it like this; "Why set myself up for failure when I am meant to succeed?" I want this year to be my best year ever!

I believe I have a wonderful life. I have worked hard for the things I have gained and for those that are around me today. I have done all that I have ever wanted.  I also have achieved more then I ever thought I would up to today. This is how I feel anyway. 

People often set goals up in the new year and achieve them and some don't, disappointing themselves.  Well, for me all I want is to reach the point where I feel strong and healthy. Most of all, keep my illness under control.  I plan on doing this by putting my own needs and wants first before others. 

You maybe thinking that I am being selfish by saying and doing this. I am telling you, it is the totally opposite. You see, in 2015, I have learned that by not putting my needs first, I can not be here, nor enjoy those I love, the way I want to.

So, I will continue to struggle and get my health under control by moving more and eating better. I will continue to learn to be a better person but watching and reading self help information. 

Just as every ending has a new beginning, I will end 2015 and begin with placing myself first. I will be making this lifestyle change.  

What are your desires for 2016? Please sure your desires with me and post them in a comment bellow.

Wishing you and yours a blessed year filled with nothing but good health and happiness in 2016.