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. 

End of an Era

Today is the last day of my 30's, marking an end of an era for me.  It also brings me closer to the end of my month long birthday celebration. 

One of the biggest birthday gifts this month started with the Tecfidera news on May 1. The Saskatchewan government announced the approved coverage for the drug.  I will be starting the oral drug on June 1st, but I have already received the gift. Last Tuesday was my last injection of Avonex. This morning while showering in my Vegas hotel after 5 days of yet another wonderful birthday gift from my husband I thought of many of my Wednesdays this last year and how this one was so different. I didn't have the side effects of the injection, and even after one week I was shocked at how normal it felt not to have the needle as a part of my life anymore. That needle became a new normal for me, but I will just as quickly accept this new normal.  Not only will the side effects and the hassle of a needle be a thing of the past, but the trials of Tecifdera show better results than the current disease modifying drugs. How can't that be one of the best birthday presents?

There has been many blessings over the past 28 days where I have felt spoiled and commented that this birthday is all month long. Just two days ago while having lunch with my husband in Vegas I received a phone call from the Regina Qu'Appelle health district regarding my moms application to move to a Regina home. They advised me that the normal wait was approximately one year, but that she is now the third female on the wait list and that I should contact her physician and set up a referral to a surgeon in Regina to handle her wound vac therapy. I was giddy at the thought of my mom being so close. Gone will be the three hours of travel time for a short visit with her. Again another wonderful birthday gift this month. 

Our first night in Vegas also marked the one year anniversary of the end of an era for Bob as well. One year ago was his last day at MNP. The firm where he spent the first 15 years of his career. It also marked the beginning of a new era.....his hard work has resulted in a very successful first year with his personal practice. I would be lying if I said I wasn't nervous last year when he made that change, but the end result has been very positive for both him and our family. 

Bob and I had a very special supper last night at Gordon Ramsey Steak and I commented that while 40 is an older number, when I look back and compare my life now to my life 10 years ago when I entered the 30's I am happy with where I am. 

At 30 I didn't have a complete family yet, nor was I as healthy as I am now. It's true, I didn't have MS or at least didn't know yet that I had it, but in comparison to my 30's I have more wisdom and appreciation.  I am blessed with wonderful family and friends and a I can only pray that 10 years from now as I am looking back on the end of another era I can appreciate my health and happiness with my family and friends. 

Tomorrow is my actual birthday but Friday I will enjoy celebrating the milestone with my close friends and family, complete with a live performance by Easily Corrupted. Another wonderful present for my birthday month. (Plus I get to go home with the lead guitarist) :)

To Whom It May Concern

This is a letter I have drawn up after months of frustration regarding the current health care policy in the Sunrise Health District where my mom currently resides. 

I am fortunate that my mom doesn't have knowledge of these expenses or the time and effort I have put into this fight. 

I want to right this wrong, not only for mom, but for everyone that had had to make the choice  regarding life saving treatments that are not universally covered in our province where  we proudly say we provide 'Free Health Care'.

I am fortunate to be able to be the voice for my mom and fight but it saddens me to think of others who don't have that voice. 

The purpose of this letter is to voice my frustration and demand a change with the Sunrise Health District’s current policy regarding the Wound Vac Therapy expenses that have been incurred by my mother, Marcella Temple who is a resident at St. Paul’s Nursing Home.  My mother, diagnosed with MS over 18 years ago is now bed ridden and dealing with bed sores. Her physician proposed the Wound Vac Therapy several months ago when the family was called as her health was deteriorating and as the decision maker I made the choice to start what would turn out to be a life changing treatment for my mother. Unfortunately while the treatment continues to show positive results and the wound is healing, the charges for this treatment continue to incur on her account. 

  

  As the Power of Attorney for my mother, I have contacted several departments within the government to inquire and get this resolved.  I have contacted SaskHealth, Supplementary Health Benefits, Exception Drug Status, Social Services, SAID program, SAIL program, Paraprogram, Regina Qu’Appelle Health District, Sunrise Health District, and even the Kinsmen Telemiracle Foundation.

  The responses have all been the same.  The Wound Vac Therapy consumable expenses are not covered under the Sunrise Health District.  The Kinsmen Telemiracle has even stated that this is not something they would provide funding for as it is a consumable health care product that, while not covered by the Sunrise Health district, is covered in other health districts in the province, therefore it does not qualify. 

  I discovered that if my mother lived in a Regina care home this would be fully covered.  Even more surprising is the fact that if my mother lived on her own within the Sunrise Health District and had home care come into her home, it would be fully covered, or if she was in an acute care bed within the same district, it would also be fully covered.  

  I have enclosed copies of my records, including the nursing home invoice and a letter from her physician indicating the additional expenses for the Wound Vac Therapy as well as the physician’s explanation of the treatment and how beneficial it has been for my mother.
With her disability and very limited fixed income, this is not an expense she can afford,but her physician, the nursing staff and I believe without this treatment, she would not be here today.   I hope this letter will prompt further and immediate investigation into the current policy within the Sunrise Health District.


  Through my discussions with numerous people within the health care profession, no one has been able to explain to me why this life saving treatment provided to my mother, who has an annual income of $15,000 and a net worth of approximately zero, is not covered.  Everyone I have talked to on this matter has been surprised these costs are not covered, while at the same time, they have been unable to help resolve the situation.

  I believe my mother’s current situation justifies an immediate reinvestigation into the current policy.  I am simply requesting that the government provide equal care within the province regardless of the health district that you live in.  I am asking not only as a daughter, but also as an MS patient myself.  It is my sincerest desire that when I need treatment I can have the peace of mind that Saskatchewan will show the compassion to provide fair and equal treatment.



21 days to 40!

Crazy realization today. In three short weeks I will be 40. 

People keep asking me how I feel about the impending date, and in all honesty while it feels strange to be leaving my 30's I am ok with my new place in the 40's. 

I remember certain numbers of significance in my life. 16 when I got my drivers licence, turning 18 a month before I graduated high school.  I remember my 19th birthday as my life was about to change.....in a few months I would become a mother for the first time. 21 was another big birthday, it was marked by a newborn child just three weeks before. 

My 24th birthday was my first as a single mom.  I remember that I was scared as to where this new life would lead but I also felt strength and independence. 

My 28th birthday would mark my last year as a single mom as that is the year I married Bob. I remember feeling the certainty that this was the man I was meant to be with forever. 

My 30th birthday was much like this big 4-0. I was very content with my place in life. I was newly pregnant with McKinley after months of trying. I remember feeling this urgency to be pregnant before I turned 30. Since we were just weeks into the pregnancy I remember hiding it with friends while we celebrated my big day.  It was easy to pretend to be drunk on the liquor I was pouring into the house plants as I was drunk on the secret happiness Bob and I shared. 

My favourite number is 33, so I found it fitting that when I turned 33 my family was complete with the addition of Reid. I remember while I didn't get much sleep that year thanks to my little man, I felt like our family was what I had dreamed of.

My 35th birthday was my first birthday I celebrated without my Dad. That entire first year he was gone was hard. The Father's Day, Christmas, birthday.....it all felt so wrong and so lonely without him. That was the first time I felt the shortening of my life. Not because I thought 35 was old, but because I thought 60 was young.  

The year I turned 36 would mark the last birthday I would celebrate where I didn't share it with MS.  9 months later I would be diagnosed with an all too familiar disease to me....Multiple Sclerosis.  It took awhile for me to work through my emotions and to find a place where I could move past that diagnosis and be more than someone defined by my disease. 

Now I can look back on the past few years and those birthdays and realize they were causes for celebration. Each birthday I was able to find the good and the blessings in my life. I think my birthday celebrations have changed and I reflect on what I am thankful for and where I am right now. 

So this years birthday will be no different than my blog from when I turned 39. 

http://inchesfrominsanity.blogspot.ca/2013/05/birthday-blessings.html

I feel blessed for the loved ones that are still here in my life, and also those who watch over me from above.  I feel blessed for my health and my happiness. 

I cannot wait to celebrate all these blessings.

Winning The Lottery

It has been a very long time since my last post.  In the past my posts have always started after a break because of an increase in stress but it's the opposite today. 

Today is the day after the Saskatchewan government announced the approval for the new oral drug Tecfidera.  

I was sitting at my desk yesterday morning when a coworker came into my office and gave me the news. I remember seeing her face but after the first sentence everything went loud in my head. I cannot believe the day is finally here. 

I called my neurologist and the biogen nurse to confirm and get the ball rolling to switch from my injections to a twice a day pill. 

And it couldn't have been better timing as recently I have had some struggles with my meds. 

After Easter we came home to a fridge that froze me medication and $2000.00 worth of medication had to be thrown out and replaced.  And two weeks before that I had an injection site reaction that caused concern it may be cellulitis. 

Yesterday marked the end of that game where you imagine what you would do if you won the lottery. 

I won my lottery.  

All the times I have dreamed of not planning my life around my needles and their reactions. All the times I sat there working up the courage to push the button to inject my meds. All the times I felt like quitting or giving up hope. All the times I struggled with the side effects. 

Before I was given that great news, I sent a message to a group of my best friends telling them while we have all been busy living our lives lately and can't be in touch like we used to be I still feel incredibly blessed to have them in my life and still have those close connections with them.  I feel like my blessings are overflowing.....but I'm going to enjoy and appreciate each one. 

86 years of wisdom and faith

Happy birthday Grandma!

Yesterday marked my grandmas 86th birthday. The woman is one of my anchors in life. I find after each conversation with her that I feel a sense of peace from her. She has so much faith and wisdom, and I feel blessed to be able to share that with her. 

It is the sad and unfortunate situation of my Moms failing health that has brought us even closer, but I am grateful for the time and even more for knowledge I have gained from her. 

When my Dad died I remember seeing the saddness in her eyes, but also the faith and acceptance that things are the way they were supposed to be. At that point I noticed her faith and acceptance, but my anger over my dads unexpected death prevented me from truly understanding it. 

I am beginning to understand the faith and acceptance, but I think it only comes with maturity. I think I have matured over the past four years since my fathers death. I have hit many of the stages of greif, sometimes more than once, but I also believe I have gained a sense of peace and acceptance in my fathers death. I don't understand the "why" of my fathers death, but I do know that he is at peace and watching over us. 

I spend many hours sitting with my mom. Time spent in conversation with her and other time in the dark while she sleeps. I know she is comforted by the fact she is not alone. Almost nightly I speak with my grandmother and share my Moms condition and day with her. I look forward to those calls.  We have shared tears and laughs.  I know while we don't know the "why" of any of this that my grandma has faith that things will be the way they should.  I am thankful for the faith she shares with me. 

My wish for my grandmas birthday is more laughter than tears, more happiness than sorrow and many more good memories with family and friends. 

Happy birthday grandma. 

Happy Anniversary

Today marks the third year of living with the knowledge I have MS. It is quite the anniversary celebration. A time of reflection as I am sitting in my Mom's hospital room with her while they keep her comfortable. 

For my Mom it is over 18 years that she has been living the the knowledge that she has MS. 

And she has been brave and fought a good fight but she is growing weaker and more frail each day. 

As I was driving to Melville to spend the day with Mom I shed a few tears for the Mom I have already lost. No longer can I call her on the phone and share in our days with each other. I miss picking up the phone and talking to her. Because her voice is so weak and barely a whisper I now dial the hospital or nursing station to ask if Mom is comfortable.

I try to take comfort in the fact she is spending more time sleeping which means she is comfortable. But I am sad for the moment I miss. 

I am also saddened by the scared look that overcomes her at times when she is awake. I know she has faith and I know she misses my Dad but I also know she is scared and not ready to leave this life yet. 

As a daughter with the same illness I struggle to remain strong and not give into the fear of my unknown future and what may lie ahead for myself and my family. 

The other morning my sweet little 6 year old was snuggling with me and telling me how sad he is for Grandma. During the conversation my bright boy came to the scary realization that his Mommy has the same disease that his Grandma has. I saw the thought process on his face and the look of fear when he figured it out. 

I tried to explain to him that each person with MS is different and that there are people working hard to find a cure so that people don't lose their loved ones because of MS. 

At the end of our talk Reid felt a little reassurance.  Even I believed the promise of hope I heard in my voice. 

Faith and Hope.....perfect anniversary gifts. 

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.