Heavy Handed

Im trying to understand the recent changes in my MS and I'm reminded of the early days of my attack and how difficult it was to try to explain the feelings and sensations to someone who hasn't experienced this. And in the early days I was a 'someone' who hadn't experienced this before.
But today I am different, I am someone who has lived with MS and the symptoms from my initial attack for over a year. I have felt the MS hug tight on my ribs unable to take a deep breath, the heavy and tight feeling in my arms and legs, the unexplained itching in my neck, the muscle spasms and twitches, dizziness, loss of balance, the numb tingling heavy hand.
These and so many more symptoms are easier for me to understand but yet still so hard to explain to those around me that haven't had to live with them.

It's not something I want to speak about just yet as it makes it more real, but I know something is different. It is a fine line between being aware of the changes in my body and obsessing over those changes.

This is how they define a relapse:
A relapse is a clinically significant event (meaning that it has outward signs and/or symptoms) caused by an MS lesion on your brain or spinal cord. It is either a worsening of symptoms that you already have, or the appearance of new symptoms lasting at least 24 hours. Relapses are also referred to as "exacerbations," "attacks" or "flares."

What is going on right now with the heavy arm and leg and the increased tingling sensation might very well be a relapse. Until it interferes with my daily activities or worsens I am going to remain positive and calm and hope this slowly subsides. I am going to try to minimize my stress which is proving to be a challenge while my 18 year old son continues to struggle to find his way.

This is the part where faith plays a big part in getting me through this. I could lay awake obsessing about my sons life lessons. I could panic when I think of all the abilities I lost in my first MS attack. But instead I will have faith, faith that Austin will learn from the choices he has made and know that we love him unconditionally. Faith that I am strong enough to fight this disease.

Happiness is...

 an already made bed

yoga class with a good friend

a warm cup of tea and a spot by the fireplace

a call to see how I'm feeling

the little acts of kindness that mean so much.

I woke this morning after a bad needle and some bad MS symptoms.  I walked into the hallway to see the kids beds were made and the light shining in their room from the opened blinds.  This was a few minutes after my husband called to see how I was feeling and reminded me to take it easy.

That phone call and the few extra minutes to make the beds and open the blinds put a smile on my face and happiness in my heart.

In the end

And today is not the end.

Control

After my neurologist appointment I was reminded again that I need to focus my energy on things I have some control over. And not waste my time obsessing on things that are beyond my control. Saying those words are easy....following them isn't as easy.

I am staying focused on researching the different medication options that doctor has given me to consider. I am dealing with the drug companies to investigate the financial obligation that each drug has. Remember because I am defined as having MS is not enough for the provincial government to pay for these $1800/month drug. I need to have 2 attacks within 2 years to get that coverage. This is one of those things that are beyond my control.

It feels like there are a lot of things beyond my control so I have to focus on the things that I have a little control over.

Good vs. Bad

I was thinking today how the good days and moments are good at helping me get through the bad days and moments.
Saturday night I had a very bad needle. The side effects lingered into most of the next day. These days are not as frequent as they used to be, nor do they last as long as they used to. But they are still there and sometimes they bring me down.

I am so fortunate that these bad days are typically followed by REALLY good days. These good days make it so easy for me be positive and look on the bright side. I am thankful for how well I feel on these good days.

And tonight I need to focus and really think about how good I felt today. I need to do that to get the courage up to inject the betaseron needle that is going to give me another bad day.

I need a bit of that courage for my neurologist appointment tomorrow. I haven't seen this neurologist since he diagnosed me with MS told me because I only had one attack that I didn't qualify for meds but to go home and hope I have a second attack. He also shared with me his negative opinion of the CCSVI procedure that I had done in December. I am anxious and don't know what to expect. I have bad memories associated with this doctor, so different from the doctors at Synergy Health Concepts and so different from my family doctor, Dr.K. I hope he respects my decision to have the procedure and I hope he keeps my best interests in mind at tomorrows appointment.

One year ago today.....

I sat in my family doctors office and he said what I had suspected but didn't have the confirmation to.
I remember feeling such genuine compassion and empathy from my doctor. I also remember walking out of the office all alone, holding my head up high, fighting back the tears and walking to my car.
I clearly remember crying so hard in my car. The shaking and sobs reminded me of wheni first heard of my Dads death. My body had gone from numb to immense sadness which I could no longer hold inside.
I sat in the parking lot of my children's daycare wanting to hold my babies but no able to go inside until I gathered myself. I got a text from a wonderful friend who has always supported and understood me. It said,
"Be strong...whatever the results you are the same person walking out of there as you were going in"
Those words are ones that I have used to draw strength and courage from over this past year. And the friend that gave me those words of wisdom I try to live by couldn't be a more accurate model of strength and courage.
This friend IS strong and she IS a fighter. She is also the same person as she was going in to each chemo treatment and each surgery. She IS MY FRIEND and I am so thankful for her.

Today I look back at that day one year ago, but I also don't dwell on it. I look ahead to my future and fulfilling my dreams and making memories with loved ones.

Today I am going to appreciate all the wonderful things I have had in my life this past year and BE HAPPY.