The pen is mightier than the sword

Today  I felt that might.  I was able to grasp a pen in my right hand. 
It was still awkward and I am not yet able to write with it.  But for now this is enough.  I am content because I know it is better than it was.  I am able to feel a little bit of what is between my fingers. 

Today for me, the pen is mightier than the sword. 
It makes me strong and able to continue this fight against MS. 

Fishing

Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.
Chinese Proverb


I was taught how to fish today. I gave myself my first injection of Betaseron. Someone didnt do it for me. The nurse and Bob stepped me through everything from beginning to end.
I feel relieved and even a little empowered because of the fact that I will be injecting medication that is proven to help:
Patients treated with Betaseron (interferon beta-1b) shortly after their first clinical multiple sclerosis event or "attack" showed a 40 percent lower risk of developing confirmed disability progression compared to patients in whom treatment was delayed.

60 days ago I had my first clinically isolated incident or attack. I could not have imagined those first few days that I would be where I am today
I pushed my neurologist, I sought second opinions and further information. I demanded answers. I fought for treatment that our government did not deem me worthy of. I was an advocate for my own health and because of that I believe that I am contributing towards helping lower my risk of developing confirmed disability progression.

It has been 2 hours since my injection, there was a little sting and at this point I am still feeling ok.
I have my iPod app that records my injection sites and reminds me of the dates. I have a light green color coded on our google calendar set specifically for my injections.
I am feeling strong and hopeful. I want this feeling to last a long time.

Warm & Fuzzy

I grew up in a family where you didn't hug, you weren't open and vocal with your feelings, no touchy feely type moments.  It took having kids to change that for me.  Kids are the best huggers and kissers.  They can turn anyone into an openly affectionate person. 
I've never had a problem with public displays of affection.....with my kids. In fact since I got sick Reid has made sure he gives my sore hands tons of kisses. He is even starting to work it,"Mommy if you read me this book I will kiss your sore hand" "I'll kiss your hand if you let me have a cookie". I swear I can feel the power of his kisses and all the love I am on the receiving end of.

Something new to me is hugs from other people. Neighbours, friends, coworkers. It's that truly comforting hug that gives me that warm fuzzy feeling. It's that squeeze on my shoulder and the words of concern that I hear from everyone that cares about me. As someone who used to be uncomfortable with these displays of affection, I find myself welcoming them, taking comfort in them and drawing strength from them.

Insomnia

This is a result of insomnia mixed with anxiety over my first injection of Betaseron tomorrow.
Some little known facts that are supposed to calm me a little:


The earlier in life MS occurs , the slower disability progresses.Individuals who are older than fifty when diagnosed are more likely to experience a chronic progressive course.

Those diagnosed before age 35 have the best prognosis. Females generally have beter prognosis than males.

Initial MS symptoms of visual loss or sensory problems such as numbness or tingling are markers for a relatively good prognosis but difficult walking and weakness are signs of poor outcome.



I'm right close to the magic number of 35, I would like to think of myself in the earlier part of my life. I'm female and my initial MS symptom was sensory problems such as numbness and tingling.

See, even in the midst of all this crap around me I can find something positive.

Hopefully this eases my mind and allows me to sleep now.

In My Corner

Friday I had my biweekly appointment with my family doctor. McKinley was at home sick so I brought her along with me. After patiently waiting for our appointment, McKinley let Dr. K check her over and then watched intently while he discussed my MS and what the plan was going to be. I was very disheartened when he told me that it wasn't a realistic goal to return to work April 11th. I know he could also tell how that news affected me. It was similar to receiving the news that I had MS. While I wasn't really surprised, it was still hard to hear. Dr. K was kind and told me that perhaps by May the symptoms will have subsided enough to start my return back to work.
The truth is he doesn't know. I'm going to have to be patient.

A good friend reminded me today that 7 years ago while Bob and I struggled to try and conceive I set a goal to be pregnant by my 30th birthday, May 29th. Just days before my birthday I found out I was pregnant with McKinley.
This year I am going to set a goal for my 37th birthday. I am going to be able to write, eat, cook, use scissors, snap my fingers, etc ALL with my right hand.

As we were driving home from the doctors appointment McKinley told me she wants to be a mommy and a doctor when she grows up. She said she wants to make people better and be nice to them like Dr. K is. Even she knew he was one of the good guys.

So good

Last night I was invited to a team supper with my work group.  I was nervous and felt awkward because I haven't been at work for so long and I'm still not 'normal' yet.  I was worried I would get upset or feel out of place.
I couldn't have been more wrong.  I did feel extremely tired from my late night out (9pm - party animal I know) but I also felt the comfort and familiarity of a group that I still feel a part of even though I have been absent for so long. 

I am scared thinking about what Monday and the injections will bring.  Im afraid what each morning will bring, but last night I was able to enjoy myself with some wonderful friends. I laughed and shared with the group, and at no time did I feel awkward. I still belong.  There is care, concern and support.

I love that despite all the bad things that happen there is still so much good.  
  

Goals

"Goals are dreams with deadlines"

I love the concept of a bucket list, but I don't like the term, so I prefer to think of it as dreams with deadlines. I want to make a list of my dreams and put a deadline on them. 
I'm having a  hard time distinguishing between my goals and the things I took for granted but pray I can do again. 

Sure the bucket list is a great idea, it gives people something to work for, a goal.  But every time I think of something I want to put on that list it can't compare with the dream of holding a pen comfortably in my hand and seeing the neat rounded writing that comes from my favorite purple fine tipped pen.
I used to dream about going to New York, or vacationing on a cruise ship.  Now the dreams that top my list are drawing pictures and doing crafts with my children, participating and walking in the MS Walk for the next 20 years. 

I am going to work on that bucket list, I promise.  But for now I'm going to focus on getting back everything I lost.  Once that's done I can think about my other dreams.

Harsh Truths

The weather sucks.   Ironically my favorite quote is, "In the depths of the winter I knew that within me there lay an invincible summer" I know the depths of winter is a figure of speech, but both inside and outside I'm feeling the cold winter.  I'm ready for my invincible summer!

Today some truths are starting to hit home for me making that invincible summer seem a little farther away.
I have an incurable disease.  No matter how many times I inject these meds it will not bring a cure.  Having been told I have MS was a kick in the stomach.  Coming to terms with the realization that this can't be fixed is just another blow. 

I can't do what I used to do 2 years ago or even 2 months ago.  Im getting frustrated and impatient with the slow recovery from this attack.  And some days, this being one of those days, I fear that this is as good as it is going to get.  I want to wash dishes, I want to write with a pen in my hand, I want to braid McKinley's hair, I want to cook, I want to work.  And I don't want to have MS!!

The Good Stuff

The past little while has been filled with some bad news. Our good friend that had the bone marrow transplant last fall is back in the hospital undergoing chemotherapy as his cancer has returned. A close friend received some bad test results.
I am praying and thinking positive thoughts for everyone I care about that is going through the bad stuff.
News like that makes it hard but I am trying to focus on the good stuff.
* My MS team is growing thanks to wonderful friends and family. Along with that, we are getting closer to our fundraising goal.
* There are so many people who are doing so many things to raise money for the MS walk. I am constantly amazed by the support.
* I found out the is a compassionate pay program through the beta plus for my very expensive MS meds. The money we thought we would have to cover out of pocket is now completely covered by this co. Pay program.

Soon I will start the injections of the good stuff, it is going to slow down the progression of this disease, but for the fist while it is going to bring some bad stuff. The side effects are going to make my symptoms worse and there will be flu like side effects, not to mention the soreness at the injection sights. I hold on to the thought " What doesn't kill me makes me stronger". Betaseron is going to make me stronger, along with the love and support.
They are some of my good stuff.

Pretending

Over the past few days I have been noticing the symptoms of my MS attack subsiding. It is a blessing and a curse. As I lay in bed last night I made Bob promise me that he would make sure I didn't pretend like this never happened.
I can see how easy it would be to pretend I didn't have MS when this attack is completely gone and I am left with the old me. Don't get me wrong, I love the old me and I miss the old me. But I'm not the old me anymore and pretending wouldn't do me any good.

There is a new me. I can't live in denial and pretend that MS isn't a part of my life. It would be dangerous for me to pretend that I didn't have MS and entertain the thoughts of not needing injections of medications every other day for the sole purpose of slowing down the progression of this disease.

Thankfully I know those that love me will continue to be there and if there is a day I want to pretend they will tell me what I NEED to hear but maybe not what I want to hear.

Human Nature

Last May I was reminded about the greatness of human kindness when a good friend of ours was diagnosed with leukemia and a benefit was put on for him. That night I was brought to tears and my heart filled with hope as I stood in the midst of a crowd brought together by love and support. I had a renewed hope in all things good.

Over the past few weeks I was reminded again about the goodness found in human nature. This is easily the hardest and most frightening thing I have faced. But I am not alone, the love and support I have gotten has made me speechless.
I have coworkers, who without hesitation have offered prayers, support and assistance. I have neighbors who have kept me distracted when I needed a distraction and watched the kids. I have 4 wonderful children that have freely given me much wanted love and kisses. I have an unbelievable boss who has supported me in ways I never could have imagined. I have friends near and far who have the uncanny ability to tell me not only what I want to hear but also what I need to hear. I have family that prays for me. I have a husband who has literally been holding my hand the whole way and has been working hard helping me with my fundraising for the MS walk. I am touched by the generosity of all these people to donate to my cause to end MS.

I have renewed hope in the kindness of human nature. That hope provides me strength.
Thank you seems so inadequate, but I am so so very thankful.
THANK YOU!!!

MS

I have told my story several times now and there is some comfort in sharing.  I have told my Grandma and she promised to say the rosary for me.  I told my Mom and she cried, as an MS patient herself I cant imagine how heartbreaking it was for her to hear.  I have told Austin and Taylor, and they have asked many questions about the next steps I am taking. 
And last night I told McKinley and Reid.  Reid is too young to have many questions or concerns, but what he has has these past 6 weeks is hugs and kisses.  McKinley understands more about MS because "thats what Grandma has".  She didnt ask any questions but said MS is also her initials :) and she is patiently waiting for my hand to be better so she can celebrate HAPPY HAND DAY. 

Today I signed up for the 2011 MS Walk on May 1st.  I am going to walk hand in hand with my family to raise money to find a cure for MS.  And again it is another step I won't be taking alone, as always I will have my family and friends supporting me.

To help END MS:
MS WALK 2011

Normalcy

I'm sitting in a rink between Tay's provincial ringette games, ipadding and sipping my tim's steeped tea feeling incredibly normal.
This morning I took my prescription to the pharmacy for the Betaseron and confirmed that a portion is in fact covered by Bob's insurance. Now I wait for the RN to teach me (or Bob) how to inject the meds every other day.
That is NOT normal in my life, but soon enough it will become my norm. It's a norm that I can accept if it means it helps me fight MS.

I've shared this with my two older kids and plan to tell the little ones a little bit more about Mommy's sore hand this weekend. I am also going to tell my Mom the truth about what I have kept a secret from her for the past 6 weeks. I'm sad for all the feelings she is going to feel, but I feel strong enough to be able to reassure her that I am fighting this and things will be ok.

Each time I tell someone my diagnosis and share my story it gets easier. It will become my normal.

Productivity

After the two steps back yesterday I'm happy to report I took a sprint today and feel ahead of where I was yesterday.

I called the pharmacist and got the DIN# for the injectible MS drugs. I called our insurance companies and found out while SaskTel doesn't cover the drugs, MNP has 80% coverage of the drugs. I called Dr. Rehman and told the nurse my findings and that I wanted the doctor to prescribe the medication. I am presently waiting to hear back from him.
I called the MS Society and found out the MS clinic in Saskatoon has a wonderful RN, Jan Britz and neurologist Dr. Katharine Knox. I have a call into Jan and an appointment with my family doctor tomorrow morning where I will ask him for the referral to the MS clinic for my 2nd opinion.
I have also found this out, which reassures me that I am pushing for the right treatment.

The following disease-modifying medications for MS are available in Canada:

Rebif® (interferon beta-1a)
*Avonex® (interferon beta-1a)
*Betaseron® (interferon beta-1b)
Copaxone® (glatiramer acetate)
Tysabri® (natalizumab)

Avonex is for people who have had a single MS attack (also called a demyelinating event) plus abnormal MRI scan results, Avonex® may help to:

delay the onset of clinically definite MS
decrease the number and volume of active brain lesions and overall disease burden as shown on an MRI scan

Betaseron® is used for people with relapsing-remitting MS. It can reduce the frequency of relapses. It can also be used to delay the onset of clinically definite MS for people who have had a single MS attack (also called a demyelinating event) combined with at least 2 MS lesions on their MRI scans.

Today I'm satisfied with what I've accomplished. I feel good about the knowledge I have gained and the path that is unfolding. I'm satisfied that my symptoms aren't worsening and that I don't have to wish for another attack on my body in order to get the treatment that I deserve.
I'm going to keep on keeping on.

One step forward, two steps back

I was diagnosed with MS, I had my family doctor and the neurologist both confirm that based on my symptoms and the MRI results that it is MS.
I went to my neurologist appointment today ready to fight this with him on my side.
I thought we would start the process for the drug treatment.

Unfortunately there are more hoops for me to jump through. The Dr. said if it were up to him he would start me on an injectible drug, but our government put restrictions on the approval of these drugs. Basically even though my MRI is conclusive and clearly shows I have MS, and that I have the lesions in the right area of the brain and spinal column because I have only had one attack or episode I do not qualify for the drug treatment.

You've got to be fucking kidding?
He started to explain that there are some people with MS that only ever have one isolated incident and if they gave them drugs they wouldn't know if it was the drugs that helped or if they just weren't prone to further attacks. At that point my husband spoke up and said, I bet that patient didn't care whether it was the drugs or not they were just happy with their level of function. I can't believe that I had a conclusive MRI and that still isn't enough to get the drugs I need. The doctor said it comes down to money, the meds would be 15,000-18,000 a year and the government wouldn't cover it unless I met the criteria (see page below):

http://www.mult-sclerosis.org/DiagnosticCriteria.html

I was good, I was strong, I was calm, I was level headed but still I hit a big brick wall.
Tomorrow I start the process of contacting the MS society to get as much information as I can, line up an appointment with another neurologist for a second opinion, check out some books at the library to educate myself more on this disease for my next appointment and get my eyes checked at the eye doctor to make sure nothing has changed there.

What the government and this doctor don't know is that I am a strong woman and I will not sit back and accept this. I will fight for me and my family.

Invincible Summer

The past few days my diagnosis has been my mind a lot. I have MS. It's the truth, but it doesn't define me.
I will accept the diagnosis, I will even accept that for right now there are things I am unable to do. I will recognize this is going to change things in my life. But I will not let it change who I am.

I blogged a long time ago about my favorite quotes. I am finding myself thinking a lot about a few of them.
Here' what I wrote last April in my blog titled quotes:

This quote was from a plaque I received many many years ago and this quote still hangs in our home.  I love the idea of equating our family to a circle made of strength and love.  The births and unions, but also I need to hold on to the part about every crisis faced together making the circle stronger. 
"Our family is a circle of strength and love, with every birth and every union, the circle will grow, every joy shared adds more love, every crisis faced together, makes the circle stronger."

The family quote leads into my second favorite quote:  "That which doesn't break us makes us stronger" I rely on that one often. 

There was a book I read when I was a young adult titled Invincible Summer.  It was the story of a young man battling cancer.  It was the first book I read that dealt with death.  It moved me and to this day I have such a vivid recollection of this book.
  I use this quote to remind me that whenever I think I am not able to have the strength within to do something that within me there is that invincible summer.
 "In the depths of winter, I finally learned that there was in me an invincible summer." - Albert Camus

I am going to draw my strength and courage from my circle of strength and love as well as the invincible summer within me for neurologist appointment is this afternoon.
BRING IT ON

Confirmation

As hard as it was to hear, I finally know. I have MS.
The MRI shows several lesions on various regions of the brain as well as lesions on the spinal cord.
I was right, but it feels like a hollow victory.

I was devastated. I walked out of the office and into my car only to collapse into a puddle. As I was crying I got a text from a close friend. She said,"Be strong...whatever the results you are the same person walking out of there as you were going in". I so needed that. Nothing has changed except I have confirmation, a name to what I am going to fight.

And I will fight, but for today I'm going recognize that I am sad and grieving and welcome the tears.

2:15pm March 7th

That's what this has been all leading up to.
The moment I will sit in my doctors office and have him share the findings of my MRI.

The emotions I have right now are all over the place. On one hand I feel confident that I am accurate in my assumption that it is MS. On the other hand I am silently praying that I am wrong.
Initially I was very selfish in my thinking about what this has cost me and taken away from me. It has shattered me, and thinking about the path my life may be on now if this is MS is terrifying. My thoughts have now turned to my family. First it was what it has taken away from them as a mother who can no longer do those things that I took for granted with my children. Now I find myself thinking darker thoughts. What if my girls get MS? I have intentionally kept my Mom in the dark about all of this because I didn't want her to have the guilt of passing this on to me. But nowhere during those weeks did I allow myself to think that maybe one day my daughters will be faced with the same things I am going through right now.

During my sleepless night last night I found myself pleading with God and begging my Dad to do everything he can to make this all better. MyDad was the handiest best fit it guy I knew. I would go to him without hesitation when something needed fixing. Not only did he fix it, he taught me how to do it on my own. I so need my Dad to do that right now.

Little known facts

Not sure why, but my mind won't turn off tonight.
Very annoying in the wee hours of the night. I must admit I am a little anxious to call my doctor tomorrow morning. I'm just steps away from putting a name to this nightmare these past five weeks.

Ive compiled some little known facts about MS over these weeks.

Canadian women are more than twice as likely to get multiple sclerosis than men

Some people with MS experience little disability during their lifetime. But up to 60 per cent are no longer fully able to walk 20 years after onset.

Symptoms appear around 30 years of age on average.

Those aged 15 to 40 are most at risk.

Where people spend the first 15 years of life affects their chance of developing multiple sclerosis. It occurs in 1 of 2,000 people who grow up in a temperate climate but in only 1 of 10,000 people who grow up in a tropical climate. Multiple sclerosis almost never occurs in people who grow up near the equator.

Heredity seems to have a role in multiple sclerosis. About 5% of people with the disorder have a brother or sister who is affected, and about 15% have a close relative who has the disease.

Cigarette smoking also appears to increase the chances of developing the disorder.

Interferon-beta injections reduce the frequency of relapses and may help prevent or delay disability.

THERE IS NO CURE FOR MS.

Good Things

I am fortunate and thankful for all my good things today

1)Austin has been here the last two days. I've enjoyed it so much. And the kids are loving it too.
2)My right side is having a good day and it has me thinking about wonderful possibilities.
3)My MRI results are sitting with the neurologist and my family doctor, which means I'm close to finding out the what of all this.
3)I feel stronger and more determined than I have in weeks.
4)My house is clean.

I love my renewed hope in all things good. I am going to need this hope for next week when I see the doctor. For now I'm just going to enjoy the good things. And if I wake up tomorrow to not such a good day I can draw on these good things.

MRI

I received a call Monday night that they bumped up my MRI to Tuesday evening, so while it wasnt the lucky 3rd, maybe the 3rd will be a lucky day with answers and the first day in KNOWING what this is and not only accepting it but putting the plan in motion to fix this.

I have said in previous posts that I do a lot of productive thinking in the shower. Well, I found another place where I had some really great productive thoughts. In the tiny tube of the MRI where I had to remain completely still, not even swallow I came up with some great ideas, complete with visuals.
The MRI was over an hour long, but it didn't feel that long at all. When I was done and went back to bob in the waiting room I thought he was joking when he said it was after 11:00.
During that hour in the MRI tube, the earplugs and headphones on to block out the annoyingly loud sounds I wad able to relax and think clearly.
During that hour I rearranged McKinley's bedroom furniture, I could clearly picture the layout. I also reorganized the basement closet for a better use of space and more organization. I remembered money I had forgotten I owed a friend, I even remembered phone calls I had to make the following day.

I got out of the MRI feeling good. It didn't hurt that my friend at work was not only correct about the one good looking tech, but I was rewarded with two yummy pieces of eye candy.

I am staying positive, thinking good thoughts, being patient and staying busy. When the answers come I will be ready to deal with it, and if by chance I'm not ready and I crumble I know I have great family and friends to help pick me back up.

Hoping that march 3rd is a lucky day!!