Touching...

After a rough night from my injection I woke up with more than my usual degree of parathesia. 

I know it's normal because of my fatigue. It also increases with the cold and today is certainly a cold day. 

I googled what I'm struggling today. I did it because I feel less alone when I read the words that someone else wrote and it so accurately describes what I'm living. 

Parathesia

Changes in the sense of touch called paresthesia are seen with MS and are experienced as a sensation of tingling, numbness, deadness, itching, burning, etc.

■Numbness can be the inability to notice a light touch, pinches or feel heat and cold. Due to the fact that numbness can result in a reduction in sensitivity, the chances that a patient could accidentally injure a numb hand or foot are increased. Precautions must be taken to protect the area from receiving cuts, blows, bruises, burns or any other kind of injury.

■Itching is a feeling of tickling or irritation in the skin that makes you want to scratch the area. Itching (also called pruritus) can appear suddenly and be quite intense, although it usually does not last very long. It can appear on any part of the body and the face. The itching associated with MS is different from regular itching because there is no irritation or rash on the skin.

■Tingling is a bothersome, tickling feeling in any part of the body and is not cause by an external stimulus (skin irritation) or a lack of circulation (leg "fell asleep").

■Burning is a feeling of sunburn. These changes in sensitivity can occur in any area of the skin, but it is usually felt in the fingers, hands, feet, arms or legs.

I remember early on in my MS my goal was to be normal again, lose all signs of MS. No more parathesia. Somewhere along the way that stopped being my goal. I think that's because it's no longer realistic. Instead I need to focus on a goal that is attainable and not set myself up to fail.  

Today my MS is worse than yesterday, but my goal is that tomorrow will be a better day. 

Alone vs. Lonely

I've been alone but not lonely. I've also been surrounded by others and lonely. 

The two words mean two very different things. I am ok being by myself, alone, content with the moment. What fills me with sadness is the feeling of loneliness, especially when you are with other people. 

This week I had a neurologist appointment which I was very anxious about.  I couldn't convey my fears and concerns to my friends and family.  After the appointment I had a lot of information from the doctor to process but no one to process it with. This made me feel very alone with my MS. It ended up where an entire day passed where my husband didn't ask about my appointment and I didn't initiate the conversation. The more time that passed the harder it became to open up and let him in.    

While I would never wish this disease on anyone, it hurts knowing that while those that love me will always support me they will never understand. I know this because I used to be just like them. Listening to my Mom speak of her MS I heard what she said, felt sadness for what she was going through but I could never truly understand......until now. 

I can share my fears, my feelings, my thoughts but my friends and family can't understand and that makes me alone and lonely. 

Music



My husband and I went to the Brad Paisley concert a few weeks ago and the experience for me was made so much more special because I was able to share it with him.

We have done many concerts over the years, particularily my obsession with Big Sugar, but this was the first time he humoured me with my love of country music.

I was moved not only by the words of Lee Brice and Brad Paisley, but I was moved by the memories created with my husband.

What I didn't share with him but was overjoyed to feel was the vibration and humming that went through my body as the band played.  As I sat there holding my husbands hand it hit me that for that moment I didnt feel I had MS.  My hand, the tremors stilled by my husbands hand, the numbness and tingling no longer noticable as the music hit me and filled my entire bodu with the vibration of the music.

I felt no pain, no MS. 

Feelings of wonder beyond my ability to explain

The heart wants

Today I was struck with a phrase I heard before but didn't really understand. And today I got it. 

"The heart wants what the heart wants"

I received a text from my brother today.

I only hear from him when he wants something. My Mom, although she lives in the same town as him sees him and speaks to him far less often than she does me. I'm angry that my brother is selfish and that the responsibility of my Mom almost always falls directly on my shoulders. 

I didn't reply to his text until later tonight as I was leery and already had a troubling conversation with my Moms nurse about her current state of health and the decline I am seeing. 

Once I finally did reply to my brother he asked about Mom, talked about how he wanted to visit with her. I found myself unloading my fears and concerns about our mothers health to him. In the midst of all his selfishness I find myself longing to have a relationship with him. I would love to know that I am not alone in my thoughts, feelings and decisions about our Mom. I would love to not feel so alone. 

I have my own set of issues each time I walk into my Mom's room. I try not to think about my own MS and how seeing her makes me fear for my own future and what I may end up leaving my family to deal with. But it's hard, those thoughts are easy to come and while I would never wish this disease on my brother, I would welcome his support.

So, the heart wants what the heart wants means that the heart is not always reasonable or logical.  It knows that sometimes while what you want isn't good for you or even realistic it doesn't stop you from wanting it. 

So tonight my heart is wishing I had a brother I was close with, that it could tell my fears to, that could help ease the burden of caring for mom. That's what the heart wants. 

Scratch that itch

After a night filled with little sleep I am struggling today.  It hs reminded me how important a good nights rest is for a peron with MS, or at least for me.
The reason I had such little sleep was due to my MS so things get tricky, making it a bit of a vicious cycle.
The sleeplessness was due to one of the harmless but crazy symptoms of my MS.  Itching and numbness plagued me into the wee hours. 
I knew better this time then to wake up my husband and have him check repeatedly for a rash.  It was my brain being tricked by the lesions from my disease.  It had me up scratching my neck and chest most of the night.  It does calm me slightly having been through this before, knowing I am not going crazy.....knowing that it will pass.  Those thoughts kept me calm as I laid awake and itched. 
What they did do was make me very tired this morning.  I notice I am slower in moving today, slower in thinking, my hands are colder than usual, coordination is worse, tremors are more noticable and my numbness increased because of my fatigue.

Because I was calm but wide awake I was able to do a lot of thinking.  Got a lot of productivity done in my head with To Do lists etc.  And I also thought a lot about my Mom.  We went to visit her on Saturday.  The visit was a really nice visit for the kids and me. Because of my optic neuritis and the busy return to school schedule etc, it was a month since the last visit.  I was saddened because I was able to quickly see how much more the MS has taken from her.  Her right hand is no longer able to move at all.  Her fingers now formed into a crippled and dysfunctional mass.  What did stick out in my memory from our visit is her comment, "I can print and eat with my left hand now." 
What's awesome is that in the midst of everything that this disease has taken from my Mom, she is able to tell me what she can still do.  Or even better, what she has learned to do inspite what the disease has taken.
So proud.


   

Winner

October 4th is our anniversary. Not just any anniversary either. This is 10 years. 

I have been thinking a lot about the fact I have been a wife to Bob for 10 years. 

I'm married and in love with my husband. I know this with everything I am. 

And I also know without a doubt that Bob is right where he wants to be and he loves me.  

I think about all the changes that my MS has brought into my life. I am healthier, fit and more active.  I have a positive outlook on life, live my days to the fullest and without regrets. I realize the truly important things in life. 

Another change over the past few years is my relationship with my husband. 

At the risk of sounding mushy I am so completely in love. I hear often the words "I love you" and even in the moments I don't I NEVER doubt his love. 

The differences happened over time.  It was little things, but mostly it comes down to telling the people you love that you love them but also showing them. Little things like a random card reminding them how happy they make you. The late night talks in bed about all the good things in our life together. The lingering kiss as I'm heading out the door. 

In less than two weeks we are going to celebrate a milestone that I am so proud to have reached. Not only have we reached the 10 years, we have grown and improved our marriage and I love and am in love with my husband. 

It sometimes feels like my life is too good. I have a so much wonderfulness in it that sometimes it feels like I am going to burst. 

Instead I am going to smile and take in the good, the wonder and the love and enjoy feeling like I'm winning!

Blink of an eye

The phrase, "in the blink of an eye" has new meaning for me. Last Saturday I woke up completely normal.  Over the course of the morning that quickly changed.  As I was standing at the kitchen island enjoying the morning time with my children I began to feel different.  I was dizzy, light headed, nauseous,had difficulty standing and even further difficulty walking.  I also noticed a pain in my eyes and my vision blurred and greyed.  Huh?  This was new.  Vision problems were what other people with MS had suffered from.  not me.  I was the parathesia, bladder and tremor patient. 

Saturday I learned that my life can change in a blink of an eye becaue of this disease.  I was forced to take different turns.  I did not want to lay in bed and wait for this relapse to pass.  I had plans, a weekend to enjoy.  Instead I laid in bed angry at this disease.  I tried not to stress, not obsess over every twinge. 
I called the doctors, nurses, I leaned on my friends and husband for support.....and in the end I made it through the relapse.

My vision still isnt 100%, but its close and its continuing to improve.  I am learning that my goals, dreams and priorities are going to take some paths I hadnt planned.  I have also been reminded that I need to remember and focus on all the good, be thankful for the wonderful things in my life. 
Because everything can change.......in the blink of an eye.

Giving Back

I attended a "Living Well with chronic illness" through my employer and health region a few months back. I completed the course feeling empowered and with a strong desire to help others. 

I remember the beginning months of my diagnosis and how I felt.  Helpless, afraid, powerless, alone. 

I want to make those months a little easier for someone else. I want to make the dark moments a little less dark for them. 

I agreed to take the peer training to facilitate this course for others living with chronic illness. I think not only will it keep me in check and using the tools I learned, but it will also give me a sense of purpose. 

If I can make things even just a little easier for someone going through a dark and hard time I want to do it. 

Even if it is as simple as someone sitting in the course realizing, "I am not alone, there are others with similar struggles and feelings". 

Before I learned anything in this course, just sitting in a small group listening to others share, I already felt validated. 

I have always had a wonderful and positive support system with my friends and family.  But while they are always supporting they thankfully could never relate. Sitting next to someone who can't feel their hands, has balance issues, tears up thinking about the unpredictability of their future has calmed me and made me stronger. 

I have signed up to the peer instructor course so that I can help people out of the dark and times and let them know not only are they not alone, there are people who can relate, show you tools to make things easier and give you hope. 

Our Family....

My favourite quote, which adorns many of the walls in our home is:

Our family is a circle of strength and love,

With every birth and every union the circle grows,

Every crisis faced together makes the circle stronger. 

After the truly wonderful memories we have made on our family vacation my thoughts are on my family and how blessed I am. 

Just before this vacation our family faced a few crisis'. My 17 year old made some really bad choices which luckily did not end with the serious consequences that it could have. It was a good reminder than she still is a teenager and she still has her lessons in life to learn. This crisis also made me realize that being a teenager back in my days wasn't as scary and complicated as it is now. 

I was disappointed in her choices, but through all my anger and disappointment I kept repeating to her how much she was loved. In the midst of this crisis when I saw her tears and the fear in her eyes I felt the need to remind her of the strength and love that our family is made up of. 

Our family circle is very strong. I can feel the strength during the crisis moments just as much as I can during the wonderful moments filled with joy. I find myself being thankful and appreciating this family circle more and more. 

I wonder if it is because I am getting older and appreciating the good things in life more?  Is it maybe that with age comes wisdom and I realize that the little things in life are really the big things. 

Here's a list of a few of my little things;

My children's infectious giggle. 

The funny things that my children say that bring a smile to my face. 

The memories created captured by my heart but not my camera. 

A random hug and kiss. 

All the wonders of new experiences through the eyes of my children. 

Seeing my traits and characteristics in my children. 

Walking hand in hand with my husband. 

I think it is going to be hard to top this near perfect vacation spent with family and friends.  I can't wait  to try though. 

Extremes

My blogging has been quiet for the past month.  Normally the quietness is either from me being busy and loving life or me dealing with new stressors.  This time it is a combination of both. 
I have had my MS tested with stress I could never have imagined I would be dealing with.  But I am happy to report that I was able to keep my symptoms in check and I did not have an attack.

Last Saturday I sat with my 17 year old daughter in the exact same room in the emergency where I went when I was dealing with my unknown symptoms that would later be revealed as Multiple Sclerosis.  I was proud looking back from where I came from to where I am today.  I am also more accepting of this disability and learning to appreciate my life's blessings and make the most of life.

While I am glad I have come so far, there are still dark thoughts.  But I think that is maybe normal for someone with an incurable and unpredictable disease.  I need to find a balance between the darkness and the blessings.

This morning in the shower I found myself smiling at the thought of my good life.  Despite all the recent stressful situations I can still feel  the blessings and good in my life.  I am thinking that is one of the reasons I have managed to keep my disease in check and didnt suffer an attack when the stress was really high. 

I know things can go from one extreme to the other, but as long as I can have faith that this too shall pass I can level out these extremes.

Because of you...

It's been 4 years since I have heard your voice or seen your face. There's been so many moments where I thought of you and wished you were here. There were moments where I even forgot that you weren't here. 

But you aren't here.....you haven't been for 4 years. 

I am still working and trying to make sure that because of you I am loving deeper and living fuller. 

Thank you Dad. I love you and miss you.

Monday

The side effects from my needle were better than usual this week.  I figured by the afternoon I was feeling well enough to go for a run. 
I couldn't have attempted a more pathetic run if I tried.  I hit the 1km mark and I had to surrender.
Instead I took a nice long walk and thought about my yoga class that talked about my 'today body'. 
I tried not to get down by my body failing on me.  I am still fortunate that I can walk and enjoy the runs on my good days. 

But it did get me thinking....what if I reach a point where it is more than just Mondays where my body is not ready?   Im not ready for that.

That Little Voice

I run because its my happy place. 

I run because it makes me stronger.

I run because I love my life.

I run because it quiets that little voice inside me,the one that used to scream "You have MS" 

I run because I still can. 

Happy Father's Day

Sunday was fathers day.

This is my third Father's Day without my Dad, and almost 4 years since I said goodbye to my Dad.

I have been thinking a lot lately about the regrets I have with my Dad. I didn't tell him I loved him and I didn't thank him for everything he did for me and everything he was to me.
I can't change that and that is a source of a lot of regret. 

So while I spent today celebrating and appreciating my husband who is a wonderful father to our children, I also shed a few tears for the Dad that I miss more than ever.
But I promise to live my life differently.  I want those I love to know I love them, appreciate them and just how important they are to me. 

The Girl In The Mirror

I was in line at Bath & Body Works last week waiting to pay for my purchase and I caught sight of someone with hair colour that I liked.....I realized that it was my reflection. 

It has been over a year and a half since I reached the 80lbs lost.  What I haven't been able to do yet is accept the reflection in the mirror.  My self image has not caught up to the physical changes.  I dont know when or if that will ever happen. 

I feel healthier, but when Im looking at clothes my first instinct is not to go to the size 6 or 8 clothes, but still without thought go to the size that I used to be. 
I'm beginning to wonder if the picture in my mind is ever going to match real life. 

How many years is it going to take for me to keep the weight off before I can stop living in fear that this is just temporary?  How long will it take until I recognize the girl in the mirror??

My "Mini Me"

As I watch my 8 year old daughter, McKinley, I realize that I am influencing her much more than I ever imagined.  And what's even more surprising is that most of it isn't by what I tell her but by her seeing me live my life. 

It reminds me of the quote:

“My father didn't tell me how to live; he lived, and let me watch him do it”
― Clarence Budington Kelland

I have told McKinley a lot of things, but I find the biggest lessons that are lasting for her have been from what she has seen me do.  She is much more aware of the benefits of being active and making healthy choices and that is because she has watched me.  She makes healthier food choices, even reads the labels on the packages now. 
I'm proud of her.    I see the mini me in the mornings when she tries to match her outfit, hairstyle or jewelry to mine.  I even notice when I hear her speak and she has the same tone as me and sometimes even uses a direct quote of something I have said.  While I am so very proud I also have to be careful that I set a good example for my mini me.

10 Years From Now

This is a great question to think about.  Instinctively I do not like change.  I think that is probably the norm with most people.  This is a great way of looking at it from another point of view.

Recently my husband, despite the fear of change, took the steps to make sure his career would not be exactly the same 10 years from now. 
He was not happy, but had spent 15 years doing exactly the same thing.  I think it takes courage and drive to take those steps and I'm proud to be married to a smart and successful husband who is making the change.  It is still early, but I can already tell that aside from some of the scary unknowns he is happier. 
Our entire family is benefiting from his happiness.  All because he overcame his fear of change.

Birthday Blessings

Yesterday was my 39th birthday.  I normally dont get overly excited over my birthdays.  It isnt that I have an issue with my age, I am comfortable and content with my age.
This year I was overwhelmed by the good feelings that came.  I was able to recognize and accept all the blessings in my life.  My day was filled with an abundant amount of goodness and I took the opportunity to not only recognize it, but acknowledge the blessings and share my feelings with those around me.

I appreciate all the good things in my life, and there are so many good things.  I want to, without being overbearing, remind others of all the good in their lives.

I feel that everything happens for a reason and where I am today is a happier, healthier me.  I think those around me have benefitted from the new me. 
But yesterday I focused on the gifts, the blessings and all the good in my life.

Ridiculously Happy

I have a hard time comprehending that the love I have for my husband continues to grow.  After we faced my MS diagnosis and we became stronger dispite the challenges I thought we were the closest we could ever be in our relationship.  And then something happens that makes me feele even more loved and blessed.
I no longer wonder if he truly loves me and accepts me, disease and all.  I go to sleep each night secure that he is right where he wants to be.
I feel blessed that we have a healthy and happy family, and a healthy and happy marriage. 

I used to think "why me?" when I found out I had MS.  I pitied myself and the unfortunate circumstances, feeling like I was being punished.
I find myself asking the same question, "why me?" when I think about my husband and our relationship, but this time on the opposite end of the spectrum.  What did I do to deserve such a wonderful marriage? 
I am so thankful that I can appreciate the good in my life and never want to take this good for granted. 

My husband is embarking on a new career venture and I have nothing but complete trust, faith and support for him.  He is driven, smart and highly motivated.  I know he will succed because of this and while the unknown is a little scary, its also very exciting. 
So, Im a little scared but ridiculously happy and in love.

Happiest Mother's Day

I love my family and the uncondtional love they provide me.  This Mother's Day was truly a wonderful one.  I felt like my heart would burst with all the love.  I was showered with gifts, endless hugs and kisses from my family.

I was able to spend the morning with my Mom and seeing her so happy and enjoying the family time made me so grateful

I spent Saturday with my two girls at the Beauty and The Beast show.  It was so wonderful making those special memories with my girls. 

I also enjoyed a Mother's Day tea with my littlest man in his kindergarten class.  He was so proud to have his Mommy there.  His big smile and constant hugs made me so thankful for the wonderful moment. 
Even though my oldest couldnt spend the day with me I still received a "Happy Mother's Day" wish from him and at 19 in his busy life he remembered his Mom and that was more than enough. 

Forgotten

I was laying in bed last night and I came to the sad realization that I no longer remember what my hand feels like when it was normal.  I used to think it was just temporary and I would regain the feeling.  I didn't entertain thoughts of anything permanent.
And last night I tried hard to remember what it felt like to have full feeling and use of my hand and I couldnt remember. 

I know there are a  lot of positives that I can focus on.  Its almost a year since my last attack.  I have been feeling healthy with my recent lifestyle changes.My family is healthy and happy.
Those are some of my positives, but last night I didnt focus on the positive.  I mourned what I lost.  I shed a few tears.

But today I picked myself up and moved on.  A little sadder than yesterday but still moving on.

Faith

Today is the true kick off to our MS Team fundraising. Tonight is our supper and cabaret.

Weeks leading up to this day have been busy and filled with many tasks, but today is the end result.  While I am aware of all the hard work and hours that went into getting to this day, I am more filled with the excitement for the good feelings that will come.

I fundraise for MS because it is a cause that is close to my heart.  I have lived the past 17 years as a daughter of someone with MS, the past 10 years as a niece of someone with MS and most recently two years ago I became the "someone with MS"

But with that new title also comes the fact that I am a wife, mother, daughter, sister, friend, coworker......of someone with MS.  All of those titles bring along people who love and support me.  And tonight those people will come together in support to fight MS.

There are low points in my disease when the MS seems to be winning, my limitations become more apparent or I am scared thinking of what my future may hold.  

Today wont be filled with fear, or loneliness.  It will be a day filled with love, support and hope.

I am grateful I am not alone in my walk.

Worthwhile Purpose

As I am getting caught up with all the activities needing to be completed for the MS Fundraiser next weekend I realize as busy as this makes me I feel good.
This good feeling comes from the worthwhile purpose I feel I have. I am working for a cause I am passionate about. This cause empowers me, it brings my friends and family together, and most importantly it gives me HOPE.

I know next weekend at the fundraiser and the following Sunday at the walk I am going to be overwhelmed.  Overwhelmed with gratefulness, pride, love and hope.
I can't wait!

Craving

This seems so simple and logical when you read the words, but so very hard to live by. 

I am a control freak, I love schedules, lists, thought out plans. MS has thrown a wrench in my control plans. 

I need to step back and look at the fact I am to powerless.  I need to focus on what I do have power over. I can control how I deal with my fatigue. I can control how healthy my life is by what I choose to eat and when I exercise. I can't control those around me, but I can control how they affect me and my stress level. 

If I put some thought into it, there are a lot of this within my control. If I spend more of my energy focused on that maybe I can let go of all the things that aren't within my control. 

That Moment

With the recent anniversary of my MS diagnosis I have been thinking about that moment. 
I thought the memorable moment that would stick in my mind would be hearing those words from my doctor...."You have MS" 
But while I do recall him saying those words to me, it isn't that moment.

The moment that sticks in my mind is minutes after I left my doctors office and was sitting in my car.  The tears started, I couldn't stop the flow and I couldn't catch my breath.  I was panicked and while I had assumed I had MS, the harsh truth of those words spoken by my doctor were finally sinking in.  And in that moment I experienced that moment.

A simple text from a friend, " Be strong...whatever the results you are the same person walking out of there as you were going in".

Not only did that text help me in that moment to pull it together, to drive home, to call my husband, to pick up my kids, to live my life that first day.  It has also become that moment that I refer to even months and years later in my dark times.  That moment has offered me reassurance and comfort when I needed it most.
I could say that this friend probably has no idea the impact she has made on my life and how that moment has given me so much, but I think she knows.  I hope she knows.

Slipped my mind

Last Thursday, March 7th was the 2 year anniversary of when I was told I had MS.  I remember clearly sitting in my doctors office and hearing those words.  Feeling like I couldn't catch my breath and that my whole world was crashing in. 
Last year on my first anniversary I was clearly aware of the date.  The days leading up to it the signifigance weighed heavily on my mind.  I remember thinking I had somehow failed with repairing and healing the damage to my body after the one year mark. 

This year, my 2nd anniversary was so different.  I no longer thought of  the date as such an important number.  Thursday came and went without giving it any extra thought.  It was a regular day with work, family and life. 
I think the biggest thing that I realized was that I am learning to live and accept how MS is a part of my life.  It isn't because I am no longer dealing with the symptoms of my disease, but more because I am accepting that my life has changed and will forever be changed. 
The issues I have with my bladder, the parathesia, the fatigue.....they are all things I am adjusting my life to without focusing on the anniversary milestones.  I am paying far more attention to what my body tells me and less attention to the dates on the calendar.

Am I well balanced and completely accepting of my MS.  No, I am far from it.  But Ido think this year I am in a better place than I was last year so it is a good anniversary.

"Toeing" my weight

Today I woke up with a numb toe....the exact same feeling I experienced with my numb finger the morning of my first attack.
I have been struggling with my fatigue this week and I know this could be nothing more than my bodies way of saying 'slow down'. 
I also know it could be more.....and that has me a little anxious. 

I am making a concious effort to try not to stress and to slow down.  But I find it hard balancing between listening to your body and not obsessing over every twitch, tingle, weakness etc. 

Why I Walk...

April 28th is quickly approaching.  As the day draws nearer and I get busier with the fundraising events my thoughts are filled with the hope of finding a cure.  I imagine my children living a life that isnt affected by MS.

I pray....I hope...I walk

MS WALK 2013
Click on above link

Do Them

Great advice. There is a list of things I've always wanted to do, yet aside from thinking about them I don't actually put things into motion to DO THEM. 

That's all changed. I am registering a relay team for the Queen City Marathon. I wanted to do this before I turned 40. On September 8th at 39 years of age I will be doing one of the things I've always wanted to do. 

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Likes

• Crisp and cool sheets when you crawl into bed
• A really close parking space in busy parking lot
• Random hugs
• Laughing until you cry
• "Thank you Mom"
• Feeling the burn from a good workout
• A favourite song on the radio
• Discovering money in a pocket
• Good morning & good night kisses
• Just because kisses

My Today Body

Yesterday I returned to yoga after a very long break.  I was very anxious about the class as it is the day after my needle and I have a hard time even with the simple things after my needle.

It was like the yoga instructor knew my situation.  We spent the entire class working on recovery poses, she spoke of our 'today body' and how we will do what we can today with the body we have today.
It was exactly what I needed to hear.  My today body on Mondays is not the same body it is any other day of the week.  I am glad I was reminded that there is benefits when daoing what you can with what you have.

My needle on Sunday was the second worst needle to date for me.  I know this because the worst time I was brought to tears and contemplated going to the ER.  Sunday I was brought to tears again.  The word I would use for the pain I felt was excrutiating. 
As painful and extreme as the side effects were I woke up the next morning and with my 'today body' I did what I could.

Will there be a day where I say no more?  There may come a day, but for right now my today body will continue on.

Options

I'm learning that there are always options.  The tricky part is being open to these options.  You need to look for and actually be open to the option.

See sometimes you are given things in life that you didn't plan on.  I've been spending a lot of my energy trying to accept my new normal.  What I didnt spend much time on was entertaining possible other options. 
I know the reason why I didn't spend time thinking about the different options to manage my new normal in life.  It's cause if I look at other options to manage that means I am accepting this is permanent. 

Lately I have been feeling cheated.  How come after my first attack I didn't return to my normal?  How come my normal was now disabled?  How come after my second attack the normal is even worse? 
I know people see the change in my hand and the ability I have in it.  I try to brush off  the questions because I dont want to acknowledge that it has gotten worse and that it is my new normal.  Normal is the complete opposite of how I feel. 

I need to explore my options and be open to the fact that things are going to be different.  It will be different for now, maybe for  a long time and maybe even forever.  But I can't live in limbo anymore I need to be open to the options and willing to change.

Deep Understanding

Funny how I wrote my last blog about grief.  I was reminded today how my grief has enabled me to understand more deeply.

This morning my brothers girlfriends father passed away suddenly from a heart attack. And just like that all the emotions from three years ago were right there. Before my Dad died I didn't understand that grief, that crippling pain, the feeling that you will never take a deep breath again. Now I understand what true grief consists of. I have empathy for what my brothers girlfriends family is going through but also for what my brother and mother are dealing with. This brings all the hurt to the surface.

I went to visit my Mom on Sunday at her new permanent room in the Melville nursing home. I felt a sense of peace and acceptance from her. I was very proud of how well she has adjusted to the changes over the past few months. Because she seemed more at peace with her life right now I too felt a sense of peace. I felt less anxious not only knowing my Mom was safe in a seniors home, but also relieved that she has found a way to accept where her place in life is right now. She is finding acceptance and happiness with where she is. Not always an easy feat so I am very proud of my Mom.

In the midst of the grief and the reminder of the loss of my Dad, I hope Mom can remember to appreciate what she has and love those around her.

Forever Changed

This happened to me.  I read this quote and I was able to relate to it. The losses I have experienced over the past few years; my Dad's death, the diagnosis of MS, my physical disabilities, my grandfathers death, my Moms declining health.  They have all sculpted and changed me into who I am today. 

I can understand more deeply because of my life experiences. I have empathy and compassion because of my grief. The life I have lived has made it easier for me to relate to others and understand. 

I can appreciate what I have because of what I have lost. This one is hard because it is easy to sometimes focus on the negative. On the things you have lost. I have to appreciate what I have right now because I know how quickly things can change. 

I have blamed it on old age and hormones as the reason I cry more easily and love more openly. I am beginning to understand that it is the pain from the grief that has changed me into someone who isn't afraid to hug and tell someone how much I love them. It has made me cry during one of my children's firsts or lasts moments, during movies, while typing my blog entries. 

Loving more openly and appreciating more deeply are good things that come from the pain and grief.  The hurt that I often feel is one of the bad things.  I ache for my Dad, worry for my Mom and fear for my future. 

There are times that the hurt feels as it is going to consume me, but luckily the grief and pain has also made me able to hope more desperately. 

Hope is an amazing and powerful thing. With hope all things are possible. I reread my blog from my darkest times when I was going through my first attack and while there was immense sadness and fear, there was a desperate hope. A hope that I never gave up on. I have hope that my life with MS will be different than my Moms. I have hope that I have not passed down this disease on to my children. I have hope that my Mom will find comfort in her new safe home. 

This hope makes the pain and grief tolerable.

Home is...

Yesterday I moved me Mom into her interm placement nursing home.  I wanted to make the move as easy as possible for her.  What I forgot to think about was just how sad I was going to be about my Mom moving into a nursing home.  It hit me last night.  As cheerful and happy as the staff are, as welcoming as the residents are it is still a sad step in her life.  All these months my Mom has kept saying she is too young to be in  a nursing home.  At 63 that isn't what your life should be.  My Mom and Dad should be enjoying their golden years.

I am too young to have a Mom in a nursing home.  My kids are too young to have a grandma they can only visit in a nursing home.  I wanted more visits to our house....more Christmas mornings here, more weekend trips to visit with us.

I am angry and sad.  I am also scared.  Scared because she doesnt have that fight in her anymore.  I am also scared that these same feelings are what my own children will be going through in 25 years. 

I need to stay positive and have faith that my Mom will be safe.  I need to remember wherever she is there will be love.

New Year.....New Possibilities

Today is the first day of 2013. A clean slate for a new year.

I have resolutions for 2013 and as always I feel much more accountable when put it in my blog.

#1.  Make a Will
       This doesn't need much explaining. Considering my health is always in the back of my mind I feel guilt I have not been responsible and done up a Will for not only my peace of mind but my husband and family too. This summer my brother and I were faced with some difficult choices and thoughts when we almost lost my Mom.  After she had an advance directive drawn up with the social worker and discussed some hard topics with us.  I want to make sure these hard decisions are taken care of.

#2.  Run!
       Now that I'm not doing it anymore I realize how much I miss running and how good I felt when I was running. I know I felt better physically and emotionally when I ran and I want to get back to that.

#3.  Lose 30lbs
       I'm hoping if I break it down into smaller goals it will be easier to attain. 5lbs a month for 6 months. And with the exercise classes and hopefully the gradual increase in running that will be a goal I can achieve.

#4.  Spend 'quality' time with my family
       My Mom's failing health has reminded me of the regret I had after I lost my Dad. I don't want to have those same regrets with my Mom or anyone that I love. Mom seems so fragile and broken since she was put in the hospital I want so badly to make sure she has a happy life and knows every day how much she is loved.

#5.  Don't lose sight of what is truly important in life.
       Sometimes I let the important things in life slip away. I get caught up in making sure the house is just so, things are in order. I get in my head that I need to work a certain amount in order to feel worthwhile and that I am succeeding. I forget to say no when I am tired and pay for it later. I am going to try to focus on my health, my family and my friends.

Once I post this it's going to be out there.....a constant reminder of what my resolutions were for 2013. It can be a reference point for me to check back on when I forget any of these things.

The first day of a new year is a great time to make resolutions, but it is also a great time to reflect on the wonders that are present in your life right now. And today I am very aware and very grateful for all my good things.

Best of 2013 everyone.