My 'real' Reality

A few days ago I desperately wished I was back at work. It wasn't that I missed having a career or felt like I didn't have a purpose.  I had a tightness in my chest because I was able to finally see that I CANT work. Up until yesterday I was able to live in denial, not only about work but my life.

Now I'm having to face the reality that MS is part of my life, it's there when I wake up, it's there when I try to write, when I sit too long, when I go to sleep and even in the middle of the long nights when I can't sleep. My days are spent dealing with numbness, neuropathy pain, fatigue, burning, itching, bladder issues.
Back when I was first diagnosed I was able to live in denial as MS hadn't taken up such a big part of my life. Now over 5 years later I've had to do some housecleaning and make more room for MS in my life. Almost every decision I make it is a factor.   With the constant neuropathy pain and parathesia it is harder and harder to push this part of my life to side side and pretend it isn't there.

The past few days I've been looking back on this disease over the years and I now realize I am not the same person I was 5 years ago or even a year ago. MS has slowly taken things.  It's been sneaky about it, so slow and sly that I often didn't realize it when it was being taken away.
My right hands ability and function is far less, but can I tell you the days it got worse? No, it's so slight yet constant that there isn't a day or time I could pinpoint that it got worse.

Ok that's all the sad crappy thoughts I have had recently.  But if you know me I like to find a positive. And even though I had to dig hard and deep on this one I have found one.
If I can't remember the moment that MS took the feeling and fine motor skills in my right hand, if I don't remember the exact moment the neuropathy pain became my constant companion then that must mean that I am learning to adapt to this life with MS.

For now I will accept it and allow it a little more space in my life.  But I am not yet willing to give up anything else to give it more room. 

  

Ready, set, go....

It has been a very long time since I blogged, which historically would mean that things are going really great. 

That is true in part, but it is also that life has gotten busy and I have gotten away from blogging as a way to sort my life's problems. 

Since my last blog entry I have lost another loved one. we said goodbye to what I felt like was my last lifeline to my parents....my Grandma. 

On top of having to say goodbye to Grandma, who was my rock and my source of faith and wisdom I have had to endure some physical setbacks with my MS and my uncles diagnosis of brain cancer. Grandma wasn't here to tell me that it's good plan and in gods hands.  She wasn't here to comfort me and calm me. I can say while she wasn't here, she was with me. I felt the strength and comfort I used to get from our talks and visits. 

I miss her but know she is at peace with the rest of the loved ones we have had to say goodbye to. 

I felt like I would be lost as she was like my anchor and I would be drifting aimlessly, but I realize that while she held those threads and started our family traditions, those threads are still strong and the traditions will continue in her memory. 

In the past month I have noticed again a slow creeping decline with my MS.  

I started thinking back to the early days of my blog and the reasons why I started it. I have decided to make an intention... I am going to blog again. 

I am going to focus on the blessings in my life.  

I am going to bitch and complain about the hardships in my life.  

I am going to work through life's problems in search of a solution. 

I am going to start at my new starting point.  

Today I 

A Thousand Words

This quote is how I feel sometimes. There are people in my life that just being with them makes me feel accepted and understood. 

But all too often I am faced with the obstacles with some people who will not understand me. That lack of understanding sometimes makes me feel the loneliest.  

I want my friends and family to understand how this disease has changed me. Congnitively and physically I am not the same person I was. I am embarrassed to tell them how it affects my ability to provide directions as simple as left and right when we are driving in the car, it causes pain and flushing on my skin where just the softest touch makes me cringe. The same disease gives me issues with my bladder and bowels that I'm far too embarrassed to share with even my closest friends. 

MS has also affected my sleep which is so important.  I lay awake at night with muscle spasms, tremors, restless legs, flushing. 

The physical changes and limitations are almost easier for me to accept and explain to myself and others. It's the cognitive changes that scare me and make it hard to explain to others. I remember 12 years ago before I was pregnant with McKinley I had an 'episode' where I wasn't able to have control of my speech....words didn't come out right. I tried to explain to my husband, my doctor, my friends but I couldn't even find the words. Eventually the issue went away and by the time I had an MRI appointment I was expecting so it was forgotten. 

Now looking back I realize that was probably the first time MS was making an appearance in my life. 

I have issues with my speech and cognitive thinking almost daily now.  The word is right there but for the life of me I can't speak it. An example is giving my husband directions in the car. You would think an easy thing like left and right would be simple, a child could do a better job than I can now. And every time it results in an argument or an annoying look from my husband. 

Because I can't put it into words without feeling completely incompetent and useless I stumble through the dialogue. Even if I did try to take the time and really explain to him how things don't work right with my thoughts and speech he isn't really going to get it. 

How do I know that?  Because 15 years ago I was him. I was that person who was annoyed when my mom couldn't find the word in her conversation. She couldn't provide sequential instructions or directions when asked.  I get it now and I'm truly sorry I didn't before. 

The last "First"

Today is the first year anniversary without my mom. 

A year ago I held her and cried while I said goodbye. 

I know she is with dad and no longer in pain but selfishly at times I wish she was here. 

The last 12 months there has been a lot of firsts. There were ones I prepared myself for like the holidays. But there were the unexpected ones that snuck up on me. They took my breath away and had me trying to hold back the tears. 

They were the times I reached for the phone to share the good news, when I was sick, when I wanted to talk to someone who could really understand when I was dealing with an ms setback. 

Having made it through 365 days without my mom means that there will no longer be the firsts, but my wonderful grandma shared with me that the seconds and thirds will still bring the sadness and tears but we will also feel the comfort and faith that gets us through the hard times. 

Things I'm missing

The past few days have been difficult for me. 

After a doctors appointment this afternoon I am ready to admit I am dealing with a setback with my MS. I always hesitate to use the term "attack".  Part of the reason is that I hate the word, it sounds mean and defeating.  Setback is somewhat more positive and at times like this I need to find all the positives I can.  

So, I admitted today that I am dealing with a setback, but it is somewhat familiar in the symptoms I experienced with my first attack.  While the symptoms are maybe easier to accept since I have had these obstacles in the past, they all bring back the emotions and feelings I experienced at the start of my diagnosis. 

In a matter of days Ive gone from feeling strong and victorious to incompetent and negative. 

I am constantly reminded of my inabilities. I remember the abilities I lost and took for granted the first battle.  I promised myself that if and when I regained those things I would never take them for granted again. But I did.  

Things I miss:

My right hand things I used to do without thinking.......

Writing

Typing

Brushing my teeth

Eating with utensils

Cutting with knives

Folding laundry

Turning the keys in the ignition

Picking up stuff

Shaving my legs

Brushing my hair

Putting in a ponytail

The list goes on.  The part that gets me is how what is seen as simple things can cause me such strong feelings of incompetency.  Part of me wishes I appreciated the gradual increase in my abilities more.  Maybe the loss of them again wouldn't be so hard to take. 

But then again I think maybe after a few days of a pity party I'm ready to take on this challenge. 

The symptoms are no longer getting worse.  My MS hug, while uncomfortable doesn't scare me as it was something I suffered the first time.  The itching and hives I wake up with at night has lessened with Benadryl. The stumbles in my steps are less frequent and improve with rest. The numbness even though much worse is still something I am familiar with over the past 4 years with this disease. 

This "setback" is something I will get past and if I am lucky the things I am missing will once again become something I take for granted. 

Thankful

Despite my MS worsening the past few days I woke up this morning and made a concious effort to stay focused on being thankful for all the blessings in my life. 

I have been struggling with handling the stresses in my life which is making things really tricky with my disease which is so very impacted by stress. 

I was disappointed that my body let me down. That my stress has affected me physically.  But then I started thinking...what if I am handling the stress the best that I can right now?  

What if my body is doing the best it can with what it has right now?

I am thankful I have not had an attack, for the love and support from my family and friends in my life, for the quiet moments of peace with my favourite music.  

Today I am going to focus on the blessings I am thankful for, big and small.  I will push aside the fears and uncertainty about the unknowns and what I cannot control. 

Collecting Memories

I'm on the drive back from a wonderful family vacation.  

Bob and I took the two little kids to Clear Lake for 5 days. And all 4 of us enjoyed it so much. 

I kept coming back to the saying.....collect memories not things.  

And that is exactly what we did. And we collected a lot of wonderful happy memories. The joy we saw in the kids eyes, the laughter, the closeness between siblings....it was all good. 

I truly enjoyed my family. It was so nice after a crazy busy 6 months with Bob's business to see him unwind and reconnect with his family. My heart overflowed with all the blessings this week. 

There were times I thought of my parents when I saw a grandpa getting ice cream with his grandkids or a grandma getting pushed in a wheelchair. But I know my parents were looking down and proud. The new memories we created also caused another positive. It brought back a lot of memories from my family holidays as a child. I shared all of them with Bob and the kids and felt a little closer with my parents because of it. 

In two more weeks we are going to collect even more memories with Tay and the little kids plus the Calgary cousins. 

Looking forward to collecting more priceless memories.  

2014

It has been such a long time since I have written in my blog. It's almost overwhelming to think about all that has changed in my life since my last entry. 

I became an orphan and a grandmother all in the past few months. 

On September 12, 2014 I said my last goodbye and help and soothed my mom as she left her life of pain and suffering to be with my dad. 

In the days and months leading up to my moms passing I felt I was prepared and logically I knew she would finally be at peace. What caught me by surprise was that my heart wasn't as logical as I had hoped it would be. In my mind I knew this was gods plan and it was for the best for her. What I had forgot to give much thought to was that she was my mom and no matter how logical it sounds you never want to say goodbye to your mom. Selfishly I wanted her here with me. 

I know in the end she didn't have that fear and pleading in her eyes as I held her hand and reassured her that we would be ok and that she was loved and can stop fighting now. I thank god that he gave her the faith to make that step easier...for her and for me. 

Saying goodbye to her that morning I was strong.  I was able to do what I had to do....share the sad news with friends and family.....make the arrangements for her funeral. 

It was the weeks after her funeral when I was sitting at home reaching for the phone or expecting the phone to ring that I realized I wasn't as strong as I had hoped. Nor was I as prepared for a life without my parents. When my dad died I was still able to seek that guidance, acceptance and unconditional love from my mom. Now I am orphaned, and my life has gotten a whole lot quieter. I realize now just how much I shared with my mom. And I struggle to fill that void now. 

On a much happier note just a few weeks ago I became a grandmother to a precious and perfect baby girl, Lilly Marie Gamracy. Just two months after my heart was breaking from the loss of my mom, it was bursting with love for a sweet little girl who we welcomed into our family. 

I see now how the circle is never ending.  How it changes through every birth and every passing but it never breaks. I am so very proud of my family and hope it can continue on to make my parents proud of what they left behind. 

Bitter & Sweet

Yesterday was Father's Day. We had a great day celebrating my husband as a father. While I felt blessed to have such a wonderful partner in the parenting of my children it was a little bitter sweet. 

My dad has been gone for 5 years. I have had to honour my wonderful father every way except the way I desperately wish I still could.....in person. I still buy him a card and tuck in away in my night stand. I still have many moments in my day where I think "what would dad want me to do?"  And I still have many tears that fall when I think of all the things his daughter and grandchildren are missing. 

But I also find myself sharing more stories with my children of my Dad and my life growing up.  Sometimes they are big moments on my life that I share but more and more I am remembering all the wonderful little things that at the time probably didn't seem like much, but looking back are so very important. 

I want to be able to look back and know that I am still honouring his memory and making him proud. 

And I think last week I did just that. 

My 20 year old son has been 'lost' in his life lately and has so much anger towards me and the choices that I made in raising him.  The past year has had more moments of him hurling hateful and angry comments at me than the moments that warm my heart. Last week after a long silence from him he texted me to ask if I had any mail for him. He also felt the need to tell me that sending him to counsellors and giving him ADHD meds ruined his life.  I stood up to him and told him how each of my decisions were made out of love. I spent countless hours in parenting classes, counselling sessions and doctors appointments because I loved him. These choices weren't made lightly but they came from love. I also told him that I love him and will always love him but I love myself and can no longer let him treat me this way. 

I told him when and if he is ready to treat me with respect and understand I didn't do those things "to" you but "for" that he cannot be in our life. 

I was saddened by the......k, whatever. Bye text but I have to have faith that my dad was right and I did the right thing no matter how hard it was.  

I also have to have faith that one day Austin will see it for what it really is......a mothers unconditional love. 

Bitter......sweet and bittersweet moments. 

Round One

Today started like any other Sunday morning. 

Had my cup of coffee with the kids.  Made breakfast and saw my husband off to his home office to work for the morning. 

Then I looked at my calendar and to do list on my ipad and decided to enjoy the nice weather and get the flowers planted. 

The only thing different I did this morning was take 2 tecfidera instead of the 1 pill twice a day that I was taking for a week. Now I have to say the 1/2 dose hasn't been without its challenges this past week. I've had some crazy flushing, burning and itching. It's one of those side effects like my parathesia and numbness that makes you question your sanity. 

But this morning I not only experienced the flushing I actually threw up.  Almost exactly an hour after taking those two little pills my body without any real warning decided to share its opinion of this new medication.  

I struggled through the rest of the day with that feeling and just having an "off" day. I know a lot of it was my mindset. I let the negativity and dark thoughts take over from my usual outlook on this disease. 

I am just tired of letting MS take more away from me. The list started in my head and I became angry at my body for letting this damn disease win this round. 

So tonight be damned if it didn't take me all freakin' day, I finished planting those flowers. And with a puke pail supplied by my 7 year old son I took my 2 evening pills. That was 1 1/2 hours ago.......and fingers crossed it looks like my body is going to win this round. And it's just what I needed to get back into the ring.