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.