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. 

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.