In a blink

Its crazy how quickly things can change. Over the holidays I've been thinking a lot about my Dad. Wishing he was here and remembering how quickly and unexpectantly he was taken from us. I remember his smile and laughter watching the excitement in his grandchildren. They would climb on grandpas knee and he would help them open their new gifts. Even at their young age they knew grandpa was their go to guy to get things fixed.
Dad brought so many wonderful memories to our Christmases.

I miss him today more than ever. My Mom is sick and in the hospital. Through all my Moms health issues my Dad was always there. He was the calm and strong one that we could depend on. I'm embarrassed to say that our family is not close. My older brother has nothing to do with me and my family and even little interaction with our Mom.

My Mom was just here for the holidays. We had a wonderful visit. I could tell she had moments of sadness but I understood and recognized that because I felt that same sadness. Physically she was in good health. We really enjoyed the visit with grandma and the kids didn't want to see her leave.
Now just a few short days later she is in the hospital. The doctor is concerned about the swelling, her enlarged heart and the fluid around her heart. Because of the physical toll this is taking on her they are also concerned about her MS and feel she may need a round of steroids to get her back on her feet.
In a blink so much can change.

You know it's love...

I have no doubt my husband knows just how much I love him. I know this because today I ironed a bunch of his shirts for him. If anyone knows me they know I do NOT iron. Early in my career I used to press my pants by putting them between the mattress the night before. That's how much experience I have with irons.

So today I can say without a doubt this is love because I am ironing my husbands shirts.
And I'm pretty confident that if the job is not the best that my husband loves me just as much and will smile and thank me.
That's love.

Good Fortune

Here's what my fortune cookie said today:

Your troubles will soon cease and good fortune will smile upon you.

Best.Christmas.Ever

With only 5 sleeps until Christmas I find myself filled with Christmas spirit.

I really wanted to make Christmas about memories. I want to enjoy the moments with my family and make the most of what we have.
I am so excited to share all the good things this Christmas. And there's sooo much good.
I have 4 healthy children, a wonderful loving husband. I have a Mom and Grandma that I get to share long time Christmas Eve traditions with. I have family and friends to enjoy the holidays with as well.
I have so many things to be thankful for this Christmas and I just know this is going to be the best Christmas ever. I know this because I got my gift early. Since Saturday morning I have without a doubt experienced improvements from the CCSVI procedure. Shortly after the procedure I noticed an improvement in the bowel and bladder issues I have suffered with, but Saturday I couldn't deny it any longer. My hand has more feeling in it than I've felt since February. February!!! I have strength and coordination back. I felt a piece of hair in the palm of my right hand yesterday. That might not seem like anything special but for someone who has had hardly any sensation for months it was amazing. I find myself fascinated by the return of what I have lost for so long.

I didn't want to be selfish and ask for too much this Christmas but this is the best Christmas gift ever. So many people have contributed towards this gift.
Dr.Harris and the Synergy clinic have helped give me the best Christmas ever, but there are so many more people that have given towards this gift.
My coworkers that are doing a steak night fundraiser to help us with the expenses, the wonderful friends who have given us generation financial support as well as being some of the best cheerleaders in my corner.
The partners at Bob's firm who overwhelmed me with their financial support and caring. All of these people show me how the world is filled with so many good people and we are truly blessed to have so many of those wonderful people in our lives.
I also have to thank my family doctor. He is a quiet man but a truly compassionate and honest doctor who supports me.
Thank you's to my children for giving me the motivation and determination to do everything I can to fight my MS.
Of course my biggest thank you is to my husband. I could not have done this without him. He makes me stronger and braver.

My only regret is that I didn't schedule the procedure sooner.
My only fear is that it won't last.

For now I am going to focus on the best Christmas ever.

The Gloves Come Off

Yesterday was the first day I had a definite without a doubt feeling that my hand is improving. I told Bob that it was distracting after having gone through several months of the numbness in my hand.
I have always tried to explain the sensation of the parathesia, but since the improvement I feel like instead of wearing 10 pairs of gloves on my hand it is like having only 3 or 4. I have so much movement without having the bulkiness of the gloves now.
I am still scared to tell too many people as I am afraid it will be taken away.

What a Christmas this will be. I truly am blessed and even without a full recovery in my hand I have so many things to be thankful for. I am going to enjoy every moment of the holidays.

5 Days

Because of my procedure and the early morning flights I chose not to take my disease modifying drugs for 5 days.
The day I returned home I resumed, but for 5 days I felt so good. Too good. Because now I'm left with these lingering thoughts of not taking my them. The actual needle itself is easy, even the mixing of the injection is also quick and easy. It's the feeling I get after.

It is nearing the 9 month of injections. The good news is that in these 9 months I haven't had an attack. What I don't know is if that is due to the medication or if my body is doing it on its own. I also know as much as I hate how the injectins make me feel, I am more afraid of having another attack, so tonight I will inject again.
But those 5 days were wonderful.

Thank You's

There are so many people I need to thank for making my CCSVI trip a success. Not just the doctors and nurses who were able to correct the flow of my veins that will hopefully slow down the progression of my MS. 

I have to thank a good friend and her family for taking care of my family. This isn't a long time friend, but I have realized this week that while we haven't known each other long (since February when our daughters set us up on our blind date) we have a great friendship. I trust her with my children and feel comfortable that she willingly wants to help a friend. Because of this great friendship I didn't worry about the kids. When we checked in on them they were having a great time and things were going smoothly. Thank you for that peace of mind. 

I have other friends that through emails and texts sent their prayers and positive thoughts. I may not have had the time or energy to reply the way I wanted to but I hope they know I truly appreciate it. 

Another thank you goes out to my sweet friend fromSan Diego.  She drove down yesterday for a nice visit and supper. It's been a few years since we have seen each other and the visit was wonderful. It was so good to have that visit to look forward to when I was nervous about the procedure. 

The last person I have to thank is right next to me on the plane. My husband has been right next to me this whole trip. He is my ROCK.  His support and care for me not only this week but since this all began has been tremendous.   This year has really shown me the "That which doesn't break us makes us stronger". Our marriage didn't break and it is so much stronger. That's in part due to the strength Bob gives me, the shoulder he let's me lean on and the love he shares with me. He's a big part of why I have the strength and positive attitude people say I have.  He makes me have hope and helps me focus on the good things in my life. For that I feel so thankful and fortunate. 

I am a very lucky woman who happens to have MS. 

Success

We are on our return flight home. So much has happened in the last 4 days. Good things. 
I had a very successful CCSVI procedure. 

First some information before I go further into the results. 
Chronic Cerebrospinal Venous Insufficiency (CCSVI) is basically a condition where the three major veins draining blood from your brain are restricted or blocked.  Studies have shown an extremely high percentage of people with MS have this condition.  The theory is that the restricted blood flow due to the blockages and narrowing of these veins lead to poor blood drainage and even reversal of blood flow direction that can cause inflammation amd iron buildup resulting in the brain lesions characteristic of MS.  It is thought that resuming proper blood flow will prevent further lesions from developing.   
The procedure is similar to angioplasty,  where a balloon is inflated to clear the blockages in arteries but it is performed instead on the azygos and jugular veins. 

Monday's MRV showed the narrowing and blockages in my left and right jugular veins. It also showed abnormal valves in my left jugular. This information was used to diagnose CCSVI and the information was sent to Dr.Haake where he will sent a detailed report back with his protocol of the MRV going over the iron deposits and lesions. This will be my base line and any further MRV's will be compared to that. 
I was relieved to hear that I had the narrowing and blockages. To me that meant there was something that could be fixed, something else I could do to fight this disease. 

Tuesday morning was the procedure. The nurses and doctor were excellent and even before I was given any drugs to relax I felt comfortable. I was given versed which has an effect causing amnesia so there are several parts of the procedure I do not recall. The nurse says they do this to keep you calm but still awake to follow commands. I was also given fentanyl which after looking into further is 100 times more powerful than heroin. Even with the drug I still felt pain and discomfort, specifically when they inflated the balloon in the left side. In trying to describe the sensation it was a tight almost popping feeling in my neck and ear area. It didn't last long and wasn't at all intense. The right side had the same sensation but to a lesser degree. 
They also used the catheter to look closer at the azygos vein to ensure there was no blockages and I remember feeling a heavy feeling in my chest. because of the incision into my groin they had to apply pressure for 20 minutes. This I barely remember. 

After I was moved to the recovery area and 45 minutes later Bob was able to see me.  Once I sat up I got nauseous and the nurse joked it must be true love if I get sick at the sight of him. Haha!
Before we were discharged to the hotel room we were given specific instructions on how to apply pressure to the puncture site before moving and to take my blood thinners twice a day for three months. 
The doctor stopped by and said he would see us the following day to go over the results but that it went really well. 

I spent the remainder of the day drinking a lot of fluids to flush out the dye they used and laying in the hotel bed. I had a headache for a few hours and a sore neck. Coughing, sneezing and swallowing causes discomfort on the left side of my neck. 

Yesterday we had our follow up appointment where they gave us the cd of the procedure and the written report. They explained what they found and what they did. They were pleased with the opening of the veins in the jugular veins and the closer look at the azygos vein did not show anything for concern. 
They went  over the typical symptoms that I may see gradually over the next several months. These symptoms are fatigue, cognitive fog headaches, insomnia, bowel and bladder issues cold extremities and heat and cold intolerance. 
I do suffer from several of these issues but my #1 on my wish list is the parathesia, spasticity and muscle tremors I suffer in my right hand. Unfortunately those symptoms aren't as likely to be relieved with this procedure. 

I'm a realist that has hope so while I knew it wasn't likely I would regain the feeling after my procedure I still prayed for it. It did not happen....at least not yet. 
And as sad as that is the procedure was still a success for me. They opened up the flow of veins that were restricted and blocked. I feel the procedure has helped me change the outcome of my disease. I went into this not knowing where I would be in 10-15 years with my MS but I feel I have changed my path. Maybe I won't be disability free in 10 years but I  have faith I will be better off than if I didn't have this done.
And that to me is a success. 

Soaring over California

It's happening....Bob and I are on the airplane right now. On our way to Newport Beach California. I think I have been fairly calm today. I did all the normal things like get groceries, change the sheets, do the laundry, ringette bookkeeping, board games with the kids. 
The not so normal things was hugging and kissing the kids goodbye, getting hugs from our friends as we left our children in their capable hands, or the hug at the airport from the friends who dropped us off. 
It was also not normal getting all the cards and emails with the well wishes. 
While these things were not normal I am taking comfort in them while we are above the clouds. 

2 More Sleeps

I can't believe in two more days I will be having my MRV. And that same afternoon I will meet the doctor from Synergy Health Concepts for the consultation where we will go over the results of my MRV.
When I have a spare moment during the day, laying in bed at night, I think about all the possible scenarios.
It might be hard to understand but my biggest fear and the worst possible scenario is where I am told at the consultation that I have no blockages or narrowing of my veins. This is the one time I want to have something. Having CCSVI enables me to have hope. The hope of changing the path I am on with this disease. Hope of stopping or slowing down the progression of my MS.

Packing

In two days Bob and I fly to California. Monday morning I will have the MRV to see if I have borrowing or blockages in my veins.
As the days get closer I am slowly filling my suitcase. Some of the essentials that are already included are my good luck charms that mean a great day to me.

The first thing I have included is the change that my Dad had in his pocket the day he passed away. This change has always been in the drawer beside my bed. I've taken it out and held it but I have never taken it with me. For this trip I am going to put this change in my pocket just like my Dad did. I want to use the thoughts of my Dad to bring me strength and comfort for when I need it the most.

I have also brought along a rock given to me by my manager. This was a gift from her in the beginning of my battle with MS. It was given in a card with some wonderful words of support. This rock normally sits in my drawer next to my Dads pocket change. I rub it for good luck and will be bringing it along. Not for the good luck but for the reminder than I am not alone and I have wonderful friends and family that are keeping my hope and faith alive and strong.

The other item I am bringing is a coin I received shortly after my Dad passed away. This coin has the phrase "If God brings you to it, He'll get you through it." etched on it. It sat on my keyboard at work and reminded me that as hard and difficult as some times may be I will get through them. In the beginning of my attack when I was off work, this thoughtful friend sent that coin home. That coin sits on my night stand and reminds me to have faith.

As scared as I am to go through with is, Bob and my charms are going to make it a little less scary when I am there.

Hustle and Bustle

This is the busiest our schedule has been since I had my first MS attack. I am concerned that the busyness of our lives is going to cause me some problems, but there is a silver lining in this all.
Because we are so busy I don't have time to give the CCSVI procedure too much thought. I don't have doubts this may be the wrong thing to do. But knowing you are making the right choice doesn't ease the fears and anxieties. There are hundreds of what if's I run through my mind when I have a few moments.
The hectic schedule means I'm still feeling well enough, have enough energy and too busy to give into those what if's.

Next Sunday when we arrive at the airport the hustle and bustle will be gone. That's where my wonderful husband is going to play a huge support role in this. He is going to keep me calm and reassure me that this is the right thing and everything is going to be ok.
Then Thursday after we get back the hustle and bustle can resume. Until the I will pray this procedure makes a difference for me and my fight against MS.

Deck The Halls

Christmas is quickly approaching.
It feels much quicker because of the hectic schedule we have over the next few weeks. With a ringette tournament out of town this weekend and another one next weekend, Austin's birthday, and the 4th Bob and I leave on our CCSVI trip we decided to put up our artificial Christmas tree this week. The little kids are very excited and look forward to decorating it with all the special ornaments we have collected over the years.

I took it upon myself to set up the tree today. Doing the prep work of arranging the branches and plugging the lights in isn't the part the kids usually get excited about. But I do. I found myself anxious to put a little more holiday spirit into the house.
I had forgotten for a moment that this was my first Christmas with MS. As I put the tree together and manipulated the branches I was quickly reminded. My clumsy and almost useless right hand is frustrating for so many things. Putting up the Christmas tree is just another one of the many things.
As I was decking the halls I starting think about wrapping gifts, writing out cards, using scissors to cut the paper, putting on the name tags and bows. These are things I can't do, or if I do they will look nothing like they did last year or the many years before.

Over the past few months I have accepted what I can't do, but each day I'm reminded of a new thing that I can no longer do like I used to I get so sad. I know I need to focus on the things I can still do and be thankful for them, but right now I need a few moments to be sad for what I can't do anymore.

Different

After my previous post where I wrote all the things that would be different if I didn't have MS I became acutely aware that I am very different from the person I was last year.
The one year mark is quickly approaching and I find it hard to believe it has almost been a year since I woke up with a numb thumb. It wasn't really that memory that sticks with me though. At that point I was still naive and believed it was nothing. The first AH HA moment was a few days later when I was standing under the water in the shower and I realized my entire upper half of my right body was numb and tingling but as soon as the water hit the left side it was normal. At that moment I knew this was something bad. Really bad.

I have one more vivid memory of my initial symptoms. This too was before I had my official diagnosis. But this memory sticks with me because it was the first time I realized how completely powerless I was to whatever was happening to my body. The first time I experienced what many refer to as the MS HUG was terrifying. How can the damage to my nervous system make me feel like I have an extremely tight girdle around my ribs. So tight that I couldn't catch my breath? Could my body really do that to me? And at the same time I wondered for the first time what the future held for me.

I'm a different person than before I knew I had MS, but more importantly I'm different today than the person I was in those first two painful memories of my disease. I am no longer controlled and overcome by my fears. I know what I have, I know what I can't do anymore and I listen to my body. I only hope that my life is not much different in a year from today because I like where I am.

If I Didn't Have MS

This morning I'm indulging in the little game!"How would my life be different if I didn't have MS?"

I think about how productive I would be at work. I would be working full time. Typing and writing like a fiend. I would be able to punch numbers with ease and without mistake on the phone and keyboard. I would be involved 100% with the daily goings on amongst my coworkers in the office. It has been so long that I find it hard to recall the positive attributes that I used to bring to the table as an employee.

I think about the carefree attitude I would still have. My entire life and the way I look at life and how I live has changed so much. I remember a few months before I had my first symptoms of MS show up I was on a winter holiday in Cancun. I am so thankful for that holiday. While it isn't going to be my last holiday it was the last one I took where I didn't know I had MS. I layed by the pool and on the beach completely relaxed and content with my life. There was no fears of what the future would bring, no constant thought that I have an incurable disease.

If I didn't have MS I would feel both my hands and all 10 of my fingers each morning when I woke up. If I didn't have MS my fingers would move the way I want them to without trembling. If I didn't have MS I would feel the painful sensation of needles in my hand and wrist. If I didn't have MS my right leg wouldn't give out from under me. If I didn't have MS I wouldn't suffer flu symptoms every other day after my injections. If I didn't have MS I wouldn't have red bruises on my stomach and thighs from the needles. If I didn't have MS I wouldn't feel the insane itching on my neck each night. If I didn't have MS I wouldn't go to sleep at night with the tremors and spasms in my right arm and awake to an aching tightness in that same arm every morning. If I didn't have MS I wouldn't have episodes of dizziness and loss of balance.

If I didn't have MS I wouldn't live with the uncertainty and fear of when the next attack will come and how bad it's going to get. If I didn't have MS I wouldn't wonder how many more years of walking unassisted I have.

There is a lot about my life that would be different and better if I didn't have MS, but I also have to acknowledge the good that has come from from the fact I have MS.

Because I have MS I am thankful for my good days, my healthy and happy family, my supportive family and friends. Because of my MS I appreciate the things I haven't lost or that I have regained.

Because of my MS I try to live in the right now and enjoy each moment.

Thoughts that count

I picked out a card for a dear friend this weekend.  As I read this very fitting card I thought about some of my dearest friends I realized I need to share these words with more than one of my close friends.

For many months I have been selfish and very absorbed with what was going on with me, but recently I had some very dear friends open up and share some of their challenges.  While it breaks my heart that they are going through these hardships I realize that it isn't all about me.  Everyone is faced with hardships, but its when you share these hardships with those that love that things get easier.  I also realize that these girls are my true friends because they have the brutal and open honesty that I love.  They have unconditional support as only true friends can. 
It is very hard to put yourself out there, expose your faults, voice your fears.  Each time I have done that to these friends I have gotten nothing but love and support. 
This is the card I am sending to my friend, but I am also sharing the words with the rest of my FOAF friends so they know they are loved and not alone.

They say what doesn't kill you makes you stronger.

Well, what if you didn't sign up for the extra strength training?

What if you'd rather catch a few breaks once in awhile?

 Is that so much to ask?

At some point, you'd think you'd be entitled to a free pass or two;

Skip this challenge.

Avoid that crisis.

Delete those problems.

It's not that you're not strong or that you don't have what it takes to get through this.

You are, you do and you will. 

But  you've built enough character already and it's time for things to lighten up a little.
I know it's not really my call,

but if I were in charge of life's wheel of fortune,

you'd get a free spin.

And  I'd be right there cheering you on!

Cheering loudly my lovely ladies.  I love you.

Table for 6 please

For 7 days Austin was staying with us.  I was very anxious about his visit worrying there would be issues that would come up.  I am happy to say that my family of 6 was under one roof for one week and it was pleasant.  It was also natural and felt right. 
I remember years ago when we were a family of 6, at the restaurants, movie theaters, family vacations etc.  The past two years we have been a table for 5 kind of family.  Sure we always said we were a family of 6 or that we had 4 kids, but for people on the outside looking in on our family it looked like we were a family of 5.

I was worried that because it felt so right and natural that I would be overcome with guilt and sadness when Austin left Monday.  Luckily that wasnt the case.  Sadly Austin once again made some very bad choices and chose to not go home all night and also not go to school the next day. 
These choices Austin made helped me realize that we will always be a family of 6, but not always living under the same roof.  Very soon because of Austin's choices he will likely no longer be living under his Dad's roof either. 

And just because he doesn't live here that makes him no less a part of our family.

The Drugs Won't Work

My husband the musician is learning some new acoustic songs in his band. This weekend he treated me to a sampling of the different songs he was interested in learning. One song in particular hit home.

He showed me The Verve's song The Drugs Won't Work. As it was playing he told me how this song reminds him of MS and my needles. He said it is so hard for him to see what the drugs do to me and not being able to do anything. He also has a good understanding of the purpose of these drugs, but he hears so many people ask me the same questions about the medication. "Are the drugs making you feel better?". "When are you going to know if they are working?"
That's the thing with the disease modifying drugs. There is a lot of unknowns. We aren't going to now if the drugs won't work or if my body just isn't going to have another attack for 5 years. And unfortunately there is no drug I can take that will bring the feeling that I've lost in my right side back. I just have to have patience and hope that in time the feeling will come back. I also have to hope that while the drugs still make me feel bad that they are working to keep my next attack away, very far away.

I hate how this disease has affected not just me but my whole family. But I am so thankful that my husband is with me through all of this, trying to understand and always supporting me.
In less than 5 weeks Bob and I will be flying to Synergy Health Concepts in California for the CCSVI. And god willing the drugs, the CCSVI procedure, the diet, the exercise and lifestyle change will be enough so that it won't matter if the drugs won't work.

Seeing the light

The darkness I was feeling is now fading and my heart is filled with such love, hope and happiness. I see the light.


The light can be the simple things in life like watched the joy and excitement in the eyes of my little ones. There is light in the good times spent with friends. It is also there when no one else sees it except me. I feel that light shining when my hands feel a little less numb or the tremors in my left fingers lessen. I am surrounding myself with all these things that show me the light and keep that darkness away.

Darkness

Today has been one of those days where my Dad has been on my mind more than usual.  I am finding comfort in the fact that he is still there for me when I need him.  I may not be able to pick up the phone or take comfort in his physical presence, but I still draw on him for strength in my dark times.

Normally I am the optimistic and positive person but I find myself being consumed by fear.  Fear that the good things in my life are going to be taken away.   It is this fear that brings the darkness. 

I am learning that fear and faith go hand in hand.  When you have faith the fear fades away, as the fear grows the faith gets weaker.  My Dad is part of that faith.  I need to focus on the faith right now and hopefully the darkness will fade away.

5 weeks

It may not always be easy, But it will always be worth it

I was reminded today that in 5 weeks I will be in California being tested for the CCSVI.
5 weeks!! I'm not ready.
I am being asked more questions about our plans and the procedure and I have to be honest it is scaring me. CCSVI has also been in the media a lot lately. I listened to an interview with Dr. Arata, the Doctor that will be doing my procedure. He was honest and very good at explaining what he did. What he didn't do was promise a cure. That's ok, because even though there is no promise of a cure there is still hope. It's that hope that makes my fear tolerable.

I also watched Montel Williams speak for the first time about his CCSVI procedure he had done several months ago. I had tears in my eyes watching him talk about a disease we share. He spoke of the life changes he experienced, but he also talked about how he works very hard every day to live with MS. This isn't a cure and you need to focus on the follow up just as much if not more than the procedure. That's what makes this hard. This isn't a one time fix, this is something that I not only have to live with, I have to work hard at and do everything I can to stay healthy.

And hopefully in the end it will always be worth it.

What If?

This is the What if thats been consuming my thoughts today.
What if I go for the MRV December 5th and they tell me that my veins are not blocked? Obviously I wouldn't have the procedure, but I haven't even entertained this thought prior to this week. This is a very real possibility and I need to think about it. Is it fair for me to put all of these resources into something that comes with no guarantees?

It's no longer a question of "what if it doesn't work for me" now what if CCSVI isn't even an option? The next question that comes to mind is "Then What?"

Living with.....

Since last Thursday living with MS has become easier for me. I have noticed an improvement for the first time in a very long time. I'm content with my physical limitations right now and am finding more patience.

In other areas of my life I've been having a hard time living with some recent decisions. I preach about the life lessons and mistakes that my teenagers have to go through in order to mature, but I've recently gone through a big life lesson. The lesson was certainly learned, but the part I'm having a hard time with is living with the regret. It seems that others are ok with moving on and getting past this mistake, but not me. Living with MS is easier than living with regret.

Relating

I received an email from an MS site that I subscribe to today and it brought me to tears. 
This woman understood what I was going through.  She talked about the numbness and tingling of parathesia. 

"I think just about all of us with multiple sclerosis (MS) have experienced the numbness, tingling and/or burning that is otherwise known as paresthesia.
To me one of the worst parts of this MS symptom is not the physical discomfort, although that can be considerable. I just hate the fact that when I have these weird sensations in my extremities, I cannot forget for one second that I have MS. I simply cannot ignore this symptom, no matter how hard I try."

She got it.  She understood me completely and hit the nail on the head for me.  I cannot forget for one second I have MS.  I used to think the parathesia was a good motivator to take my needles as I couldn't pretend I didn't have MS.  But 9 months into this I would love to pretend even for a short time that I didnt have MS.

For today I am thankful that someone gets me and can relate to me.  I am not alone.

Show & Tell

Today marks 8 years of marriage for Bob and I.
I just reread my happy anniversary post from last year. 7th Anniversary blog

I wrote that months before I would find out I had MS.  Now I think a kot about the "in sickness and in health" part of pur vows that we took. This whole ordeal has taught me that marriage is team work and I cannot imagine where I would be without my other half.  Because of this support and strength I have gotten I want to make sure Bob knows just how much I appreciate and love everything we have.  Our family is still important but raising a family as a happily married couple makes it that much easier.

I have also learned that while we aren't a romantic couple, we don't do the public displays of affection, showing and telling someone you love them is still important.   This year I have a surprise planned that will clearly show him how much I love him.  I can't wait until Thursday. 

Happy 8th anniversary Bob!

The dirty truth

This week marks 8 months since the beginning of my attack. I feel a shortness of breath when I think about certain facts I have read about MS attacks:

*Some relapses leave damage in their wake in the form of plaques or scar tissue, so that even though the inflammation is gone and the lesion is no longer active, you will never return to that “baseline.” One large study showed that 42% of exacerbations leave some degree of “residual impairment"

*One year after a flare-up, whatever symptoms you still have are likely to remain.

The clock is ticking....I have 4 more months to wage a war with my body against this disease.
I'm being selfish, but this is my first attack. I don't want any degree of residual impairment. I'm only 37 and had just ONE MS attack.

With this knowledge how can I not hold on to the hope that the CCSVI procedure will eliminate the residual impairment? Today that hope scares me more than the fear of the procedure.

Head in the sand

When I was first diagnosed with MS I remember posting about knowledge being power.  I would be up late at night googling the disease that I was fighting. I felt empowered knowing so much about a disease with so many unknowns.

Today I realized that while I have done my research and due diligence with the CCSVI procedure there are setbacks to knowledge.  I know a lot about this procedure and this knowledge makes me scared.  I dont like being scared, takes away that feeling of power.

I had another terrible night with little sleep last night.  Something that is becoming a habit unfortunately.  The sleepless nights are because I have knowledge and hope.  The knowledge gives me the fear.  Fear of the actual procedure causing pain, fear of something going wrong, even the fear of them NOT finding a blockage of the MRV.  Thats the hope part that keeps me awake at night.  I lay awake at night with thoughts of my normal hand returning.  I try to imagine what it would be like after my procedure the first time I feel my right hand again.  The hope is for the future too.  I have hope that the CCSVI will change the path I am on with the diagnosis of multiple sclerosis.  

These thoughts keep me awake at night and consume much of my waking moments too. I have to find a way to stay focused.  To not let the fear get the better of me.  To still have hope, but keep the hope realistic.
How do I do that from now until December 4th without burying my head in the sand??

Trading up

A friend told me about a high school friend whose Dad was diagnosed with MS at 50 and he lived until he was 89.  Initially I was feeling very positive about this news.  Until I heard he was confined to a wheel chair.  I would trade 10 years off my existance if I that meant my life wouldnt include a wheelchair. 
It isnt just the wheelchair.  It is the additional assistance, the fewer things I can do on my own. 

Since I cant trade levels of my disability Im left with doing everything I can to avoid that outcome.  Im putting a lot of hope into my CCSVI procedure December 6th. 

December 4th

I was reminded again this past week just how wonderful and generous the people are in my life. The moment I shared my decision to have the CCSVI procedure I was given nothing but positive feedback and support.
That made the somewhat scary and unknown future a little easier to handle. The anxious feeling I have about the procedure sometimes gives me a pit in my stomach.

The whole idea of a tube being inserted into my groin and a balloon put in to inflate a vein is a little unnerving. Then I think not only about the support of my friends and family, I think about my kids. I want to do this for them. So that I can be the Mom that has MS but doesn't look like it.

Ive also been thinking a lot about my Dad. This is certainly one of those times where his voice can be heard clearly, "do what you think is right". I think this is the right thing to do. I also feel comforted by the fact my Dad had this procedure on his arteries more than once. My dad also had open heart surgeries. What he went through was far riskier and scarier than this procedure, but he did it. I think he did it for his family. He did what he thought was right. Because of his decision I was able to have my Dad in my life for 35 years.

I'm flying to California December 4th for a procedure to hopefully slow down or stop the progression of MS. I am also hoping and praying that after surgery I will be able to feel and use my right hand again like I used to 7 months ago. I try not to focus on the possibility of regaining the feeling and coordination back in my right hand, but it's so hard to do when each morning it's the first thing you think of when you wake up, of the constant reminder throughout the day when I can't feel.
My main reason for having this procedure is to ensure I do everything to stave of the disability phase of multiple sclerosis. But when I allow myself to dream and think about the possibility of this procedure giving me the feeling back in my right hand I get so excited.

I won't allow myself to feel the disappointment if in fact the feeling doesn't come back in my right hand. And if I do feel that disappointment I have those wonderful friends and family that will help me get past that and focus on the good.

At Ease

My Mom came for a visit this weekend.  I was very anxious about the visit.  I was embarrassed to admit my reasons.  I love my Mom, but looking at her in her wheelchair, getting assistance from homecare aides daily, not being able to lift her leg, it was a much darker side of MS.  Top that constant in my face with my Mom's usual negative and demanding demeanor and now you see why I was anxious.

Surprisingly the visit went far better than I had expected.  I am not going to say it was easy having the constant reminder of my disease, but the nice talks we had, the kids spending time with Grandma, it made it alright.  I also noticed that my Mom's attitude has softened.  She is less demanding, more thankful.  She seems more content with life now.
The hardest part of the visit was how it affected me physically.  Transferring my Mom from wheelchair to chair, helping her in and out of the car and up and down the stairs has me tired and sore.  My right arm has a heavy numb feeling that I didn't have last week.  My neck is stiff and sore and I have more pain in my wrist. 

As a daughter I need to speak up more to my Mom.  As an MS patient I need to make sure I take care of myself first and foremost. 
I will certainly plan another visit for my mom, but I will make sure neither of us do anything to jeopardize our health.

There....I said It!

You know how sometimes when you think about doing something and you know in your heart you've made up your mind, but you havent had the courage to say it out loud to anyone else.
I was there.....for days I felt that the ccsvi treatment was the "do what you think is right" thing for me.

Today I told two people. After saying it the weight was lifted and it felt right.
What also helped is that the two people I have told were completely supportive and excited for the possibility for me. I have hope for the future.

Therapy

I realized today after typing a reply to a dear friend struggling in her marriage that it is easier it give advice than it is to take those words to heart in your own life.
As I typed I realized I have this uncanny connection to this friend I have never physically met. She is my kindred spirit.
As I was telling her to fight for her marriage I realized that her disease hasn't taken things away from her but it has changed how she lives her life. She also has to realize (and so do I) that her husband is also going through some significant changes. Being faced with life changing news is not only hard for the patient but also the entire family.
There are stages of grief, but the grieving isn't just for a death. Grief has to be dealt with in many areas of your life; divorce, death and illness are all processes that need to be worked through.

I was so caught up in remaining positive and determined not to let MS change my life that I forgot how hard this must be for the rest of my family. 8 years ago when my husband said his vows he never envisioned we would be here today. He needs deal with all the emotions just as I do. There is anger, denial, mourining. Just as my thinking and the way I live my life has changed his has too. I have to not only acknowledge that, I have to work WITH him to get past this.
We are a team and I have to remember working as a team isn't a sign of weakness or that I am incapable. It means I have a loving husband and together we are stronger and more determined than me alone.

Food for Thought

I was surprised to receive a phione call on Sunday afternoon from Dr. Hewitt (Synergy Health).  A mutual acquaintance gave him my number, but I wasn't convinced I would hear from him.  He called and answered all of my questions and provided me with a lot of information. 
Synergy is a facility in Cosa Mesa that specializes in CCSVI and he is also the doctor we saw speak at a seminar in Regina.

We had a busy weekend so after my conversation with Dr. Hewitt I didnt get a chance to talk to Bob about it.  Like many of the other medical decisions I've faced recently I havent been able to talk to my husband about it.  Whenever I bring up the subject with Bob he doesnt say much and gets very closed about it.  I know he is indecisive and I dont want him to make the decision on my health, but I want him to support me. I am left thinking this is an issue of money with him.   I might not be correct in my assumption, but since I get nothing from him I entertain all sorts of thoughts. I have even told him in the past that if I do go get the procedure and we want to do fundraising for the cost that I wouldnt feel comfortable organizing it like I did last time for the MS Society.  I was hoping he would have an interest and plan a fundraiser but he has been very hands off with that as well.

At the end of the weekend I came to the realization that if money wasnt an issue I would have my procedure booked but I have also realized that I need to be able to talk about this.  If it cant be with my husband it has to be with someone....anyone.  Im a talker, that's how I work through things.  So Im going to talk on my blog, talk to myself.

Dr. Hewitt told me that over 30% of his patients are like me, newly diagnosed with MS and most with the clinically isolated syndrome. He also told me that many of his patients do experience an improvement in the parathesia.  He explained that much of the information online from patients that have had the CCSVI procedure are from very vocal patients that have had a more noticeable improvement in symptoms than a newly diagnosed MS patient. 
He understood my reasoning and motive behind the treatment.  Regaining feeling in my right hand would be the best gift right now that  I could hope for, but I'm looking at the big picture, my future.  Dr. Hewitt said that by having the procedure I could potentially give me another decade disability free and who knows with the MS research that might get me to a cure.  That is HOPE.  And I need to hang on to the hope.  He also reassured me that while they prefer annual Haake MRI's (which isn't offered yet in Canada) for followup, that he said you could get a doppler in Alberta and that he feels that the MRV and other diagnostic tests will be offered in Canada in the next few years.

Dr. Hewitt provided me with information but he also reassured me that my motives were reasonable and logical.  Now just to take the next step. 

Do What You Think Is Right

Once again the little voice of my Dad was in my head. I had convinced myself that it was ok to skip my injection tonight. I had it all planned and was looking forward to a really good day tomorrow. And then I heard it. My Dad's voice. "do what you think is right".
It was always spoken softly without any judgement or tone. And he somehow had faith in me that even though he allowed me to make the decision that I would make the right one.

Well, apparently all of those teaching moments growing up where I was given the choice to 'do what I thought was right' actually paid off.

I got up out of my bed and injected my needle because I listened to the voice and I think I did the right thing. I'm hoping for a good day tomorrow because I did the right thing.

Thanks Dad.

Memories of my Dad

I saw my Dad in my 5 year old today.
My Dad loved butter, it was a family joke that he would have a butter sandwich with a little bit of bread. 
McKinley loves butter just like my Dad.  I was making supper and out of the corner of my eye I saw her dip her finger into the butter dish and take a lick. 
That is so something that her Pappa would have done.
I love when something or someone makes me think of the happy memories of my Dad. 

Paperwork

I have never loved filling out paperwork as much as I did today. I have pages of school forms to fill out. I sat in the kitchen and carefully and slowly filled in each of the pages.
Just a few months ago when we registered McKinley at her new school and because I couldn't write the principal filled out the registration.
Today, just two months later I am able to fill out the forms without any help. My writing still isnt where it was, it's closer and my hand is feeling better.

Just then other day I was having a great day and wondered "could it get even better than this?".......IT CAN

I feel GOOD

After a very productive morning of making lasagna and other freezer meals I went for a run. During my run different thoughts were running through my head:

*Today is 7 months since my 'attack'

*I feel healthier and in better shape than I was before I was diagnosed with MS. Maybe this is a wake up call and if I can continue to stay healthy and active I won't ever get attack #2.

*I made the call and have researched a lot on ccsvi and now am anxiously waiting for a call from Dr. Hewitt to get further information on the ccsvi procedure and results in newly diagnosed MS patients, specifically ones with a clinically isolated syndrome like me.

*I feel so good today. Not only because today is my good day, but also because I have chosen not to inject my betaseron tonight. This isn't a rash decision and I have many valid and justified reasons. Tomorrow morning I have to move my Mom to her new apartment. If I inject not only will I be sick with the flu symptoms, my hand and numbness will be worse making me far more useless in the move. I also want to see how much better my hand feels without my injection. Every time I inject my hand and arm get more numb. I am excited to see just how much I can feel tomorrow morning.

I feel good on the inside and out. I am thinking clearly, feeling positive. This is the closest to the old me I have felt in 7 months. Could it get even better than this?

Tolerance levels

Three nights ago I experienced the most painful and intense side effects from my injections. It was so bad I considered a trip to the emergency room in the wee hours of the morning. I like to think I have a high pain tolerance, but this had me in tears.
It was all the regular side effects; jaw and ear ache, headache, muscle cramps and aches, nausea, chills, shakes but easily 10 times worse than any bad night I ever had. Plus I had horrible pain in my hands. It's hard to describe but my hands felt so cold and numb that they were burning hot. The entire day after I still felt terrible and the movement and feeling in my right hand had noticeably decreased since prior to the injection.

I lived through the horrible ordeal, but had anxiety about doing another injection. I called the nurse hoping she could tell me what I did wrong and ensure it didn't happen again. Unfortunately she told me that is the makeup of the inferon based medication and it can randomly cause intense side effects.

I did my injection last night and the side effects are still there but not like the other night. It's funny because this morning I woke up relieved that it was just the regular flu like side effects. Mt tolerance level and acceptance has changed. I'm now more accepting of the side effects I've dealt with for 4 months. Just as I have accepted some of the changes in my life because of the numbness in my right side.
I hate that this disease is changing what I accept as a good day and what I am willing tolerate. I don't want to make anymore compromises.

16 years

"The greatest danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it."

I've been studying and researching disease modifying drugs and the CCSVI procedure.  I recently read about a study on the disease modifying drugs that I am currently on.  The study showed that the drugs did not slow down the progression of the disease.  Both groups, those being treated with drugs and those without had an average of 16 years before they required a cane or assistance with mobility. 

16 years?  Technically I have 15 1/2 years left.  I want more than 16 years.  I think about the fact that I will be 53.  More importantly I think about my oldest being 34 abd my youngest being 20.  I dont want to be that Mom (or Grandma)

I have taken up running.  I have a constant motivator...my disease.  Each day that I can still take those steps is a day to be thankful for.  I have also started to consider doing a 5K race.  Im not a fast  runner but I want to be able to say I have tried and accomplished this.  Running keeps me healthy and ahead of my disease.

I now need to start looking seriously at the CCSVI treatment.  I dont want to wait until I am disabled to the point of being unable to walk.  I need to face the fears of having this procedure done.  I also need to face the guilt of spending so much of our families savings in order to have this done.  Logically I know the procedure is invaluable to me and my entire family, but I know I would feel tremendous guilt.

 

Gifts of Memories

I've been focusing on the word of advice in my previous post about living in the moment. 
Life is short.
As a family we have been enjoying some really good moments.  They are small and simple moments, but as a family we are finding such happiness in them.  I love seeing these moments through the eyes of my children.  Hearing my 4 year old loudly exclaim "This is the best day ever."  makes the excitement contagious. 

We are taking ordinary days and turning them into wonderful memories.  This started out as a goal of wanting to give my children experiences and memories, but it has turned into so much more.  It has become a gift of happiness to our entire family. 

In your head

I have MS. Along with this invisible illness I am faced with having to deal with the comments from people who haven't been in my shoes. The ones where they think it's all in my head or that I'm convincing myself to feel these things. They are correct with their comments of it being all in my head. There are lesions in my head that are causing this numbness. Along with the numbness is a lack of coordination. When I want my fingers to move a certain way it doesn't always work that way. I've tried telling myself it's all in my head (otherwise known as living in denial) and when I do that I usually end up hurting myself or breaking something because I am not making this up. I cant ever forget that I have MS because I have a constant reminder with the numbness in my hand.

There is silver lining in these clouds. I continue to get better. It is still slower than I would like but it is at least moving in the right direction. I get excited thinking about the possibility of forgetting that I have MS, if even for a day.

Living in the moment

Life is short

Break the rules

Forgive quickly

Kiss slowly

Love truly

Laugh uncontrollably

And never regret anything that made you smile

In my internet search today on Multiple sclerosis while looking up another symptom of my disease that I am facing, I came across some great words of advice.  It talked about how people diagnosed with MS should live in the moment, live for today. 

In the same day a good friend posted some wise words to remember and live by on his facebook wall.  Instead of being consumed with this disease I am going to remain positive, live, kiss, love, laugh and have no regrets.  

Every once in awhile a day that starts out very negative and full of fear and uncertainty has a way of turning around into a lesson and a little good.

Memories

I have been thinking a lot lately about memories or moments in your life that are forever etched in your mind.
Sometimes it is the really big moments in your life, like walking down the aisle with Austin the day I married Bob. Or really random small memories like when I was in grade one and had a pink smelly house shaped eraser that I showed my friends on the playground. The memory is so vivid I can still smell it.
I will always remember the feeling and look of my Dad's rough and calloused hands. I will remember the one camping trip where he pushed me so high on the swings I thought I could touch the sky. I also remember the phone call when my mom told me he died. I will never forget my moms screams or laying on the cool tile of my bathroom floor crying.

I remember riding in Bob's sports car the day he sold it. We drove it so fast and I had butterflies in my stomach from the thrill. I remember walking into the front door of the first house Bob and I bought together. I can still smell the fresh paint smell.
I remember my favorite pair of jeans I always wore as a teenager. The winter jacket my Dad took me shopping to buy. I remember making green pudding in elementary school for St Patricks Day.

I always worry my memories are fading or that I'm not as good at recalling my life, but if I think about it I have a lot of memories that make up me.

6 Months

Six months ago, to the day, January 27th, I woke up with a numb thumb. Reading my blogs from 6 months ago it still all seems so surreal. Tomorrow morning I will have had these MS symptoms closer to a year. I only hope that the feeling and function returns before the one year mark.

The past few days I have been aware of the fact that I am in denial or at the very least have a resistance to the life changes I have experienced. Then I wonder, can it really be denial if I am aware of it and acknowledge it?

I am aware each day that I have MS. I know I do because my right hand still doesn't have feeling in it, my fingers are still tingly on my left hand, I easily get fatigued, My right leg sometimes 'buckles' when I walk, I have sore bruises on my thighs and stomach, I have flu like symptoms every other day. I'm trying really hard to find the reason that this is lasting for 6 months and what possible good could be found on this.

Because I have such constant reminders of my attack I am constantly reminded and determined to stay active and be the healthiest I can be. Because of my bad days I truly appreciate and enjoy the days I feel good. Because it has seemed like forever, but also just like yesterday I remember how bad it was when my attack was at it's peak and I am thankful for how far I have come.

Now I have to find a way to come to terms with what this disease has done and more importantly the fact that I can't control or even know what it is going to do to me in the future. That's the part I am having resistance to. As a planner and organizer I just want to mark down the day when the flu symptoms will stop. I want to put on the calendar the day that I will have full feeling back in my hand. I even want to mark down attack #2. It can be next month, next year or 10 years, but I just want to know.

I am going to try to have faith that 6 more months from today things will be better and not worse than they are this day.

Disability

The definition of disability is:

1.
lack of adequate power, strength, or physical or mental ability;  incapacity.
2.
a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job.
3.
anything that disables or puts one at a disadvantage

As a parent of a son diagnosed with ADD I have always taken issue with the word disability. His ADD does not fit the definition of disability and more importantly there are benefits and a positive side to ADD.
Since my return to work a few short weeks ago I've become hung up on the 'disability' word again. I can no longer pretend I don't have a disability and as deep as I dig I cannot find the positive in my disability. Sure I can tell you about the wonderful friend I have found because of my disability. I can even tell you about how healthy I have become and how hard I'm working to stay that way, but when it comes down to it I would give up so much not to have this disability.
The key words I see in the definition of disability is incapacity and disadvantage. I am incapable of writing. Something I used to take for granted but also something I used to be really good at. I am disadvantaged when I am trying to stir a pot, put a ponytail in, type on a keyboard, use nail clippers. I could write a very long list of things I am incapable of or have a disadvantage at.

I have recognized since returning to work that these disabilities have become more apparent and I'm struggling not to let that get me down. I know things could be so much worse and even a few months ago I was so much worse, but I just want to be capable again.

Dear Dad,

It's been two years since I've talked to you and I've been missing you so much. There has been so many big things that have happened in our lives that I really wished I was able to share with you.
I think Mom is doing alright, but misses you terribly. I have learned that you have to have faith and believe that everything happens for a reason. I know you are happy and with grandpa and grandma now and that even though we haven't seen you, you have been watching us.

I'm doing good. Sometimes I actually surprise myself when I think about the two years that you have been gone. We have had so many changes, big and small. Austin now lives with his dad and recently went through some very hard times in his life where he made some really bad choices, but we did good by him. We loved him and were firm with him. I often wonder what you would have said to me during this really tough times.
The other really tough time has been my MS diagnosis. There were so many nights in the beginning before I was diagnosed that I cried and prayed you would have some pull and make this all go away. Obviously it doesn't work that way cause I know you would have done everything you could have. I realize while I am powerless to change my illness I still have hope. I am working hard and making sure I do everything I can to be as healthy as I can for me and my family.
Dad, you would be so proud of your family. Austin passed all of his classes and is going into grade 12 in the fall. He has started playing hockey again and is really enjoying that He adores his little brother and in Reid's mind there isn't a cooler person around. Taylor just got her learners licence and made honor roll for her first year of high school. She has a job teaching gymnastics and is enjoying her teenage years. McKinley is so excited to start grade one and go to Tay's old school. She is reading chapter books and doing math problems. Reid is still our little go getter. He loves spiderman and can't wait to play hockey this fall. We still talk about the first sentence he said when you and mom brought that cake for dessert and he said "more cake please". I have to tell you I smiled yesterday as we had friends over for supper and they brought the exact same cake you guys did for dessert and McKinley and Reid remembered it and told them the story. It was just another one of those ways I am assured you are keeping a close eye on us. I found it very comforting that we were able to celebrate a happy memory on a day that was filled with such saddness.

After 2 years I miss you today as much as I did the day you left, but I can say that while the saddness and sorrow is still there, I am filled with comfort from the memories I have and the stories I share and pass on to my children. I am also starting to accept the peace that comes with the faith of knowing you are in a better place.

I love you and miss you
Love, Rhonda

Three Little Words

Funny how sometimes when you always hear those three little words, "I love you" you take them for granted.  But when you stop hearing them the silence is deafening.

Coincidentally since I told my husband the other three little words "I have MS" I haven't heard the original three little words from him.  I've heard things like "We will get through this"  "I'm here for you" "You'll get better" from him, but as each day passes I can't help but wonder. 

Reminder of What Cancer Cannot Do

THURSDAY, JUNE 17, 2010

What Cancer Cannot Do

It cannot cripple love

It cannot shatter hope

It cannot corrode faith

It cannot destroy peace

It cannot kill friendship

It cannot suppress memories

It cannot silence courage

It cannot invade the soul

It cannot steal eternal life

It cannot conquer the spirit

I can also tell you what cancer CAN DO.  It can bring friends and strangers together to fight for a common cause.  It can create an enormous support system for friends and families struggling.
It can bring 850 people together for one night in one room with an overwhelming outpouring of generosity and love, and it can remind everyone that life is important.

Thank you Dwight for teaching us so much.

Goodbye

Last night we lost a wonderful friend.
The friend I have blogged about that was diagnosed with leukemia and had a stem cell transplant last fall passed away.
I am still in shock as to how quickly things can change. And my heart is breaking for his wife, daughter and family & friends.

Dwight was one of the people I looked up to and drew strength from because of the amazing strength and faith he had. A good friend of mine told me that we were given our disease because God believed we would do good and make a difference. I believe that with Dwight. He has made a difference and will continue to make a difference in all of the lives that he touched. And he touched so many. I remember being a part of the first benefit concert and the wonderful feeling watching all those people together for the same cause.

May 30, 2010 Perspective - Part 2

After spending Saturday evening at a benefit concert for a friend battling leukemia I have learned a little more about my perspective on life.
Along with 500+ friends & family I felt a tremendous urge to do what I could for a friend in need.  I was so proud of everyone in attendance.
Human nature is a great thing.....we cannot help but do all we can for our friends and family in need.  The outpouring of love and support made me thankful for the wonderful friends I have and the great community we live in.
I hate that I have lost someone to cancer, that I know someone with cancer, that there is not yet a cure for cancer.  But on the opposite end of the spectrum I love that we feel empathy, we have helped someone with cancer and we are all working towards a cure.

I can't help but be thankful for the wonderful life I have and the wonderful people that have blessed it.
That's today's perspective.



Dwight, you will be missed.

A Good Bad Day

Yesterday, the day after my needle night was my bad day. The day is usually filled with nausea, headache, chills, shakes etc.
I'm quietly celebrating the small victory that my body handled the needle better than it has in a long time. I'm doing it quietly because a few weeks ago I thought I was over the hump of the nasty needle side effects, only to be proven wrong.

I still look forward to my good days and try to make the most of them, but I am truly thankful for my unexpected good bad day yesterday.

Stress

They say MS is triggered by stress. Unfortunately stress is a constant in everyone's life. I have learned recently that it is unreasonable to try to eliminate stress completely from your life. What I have also learned is that the key is to manage the stress.
Ive been tested recently in the stress department.  A visit from the police, calls from the school about your child being expelled, calls from your teenagers manager advising you that he has missed another shift and will likely be let go.  All of these things are testing my ability to deal with stress. 
Me and my body are winning against these stressers.  I am relieved to say while I am so afraid about the what ifs with Austin, I am still sleeping,eating and exercising properly.  Im relaxing and enjoying the good parts of my life . 

Each night I go to sleep thankful that my body is working with me, I also go to sleep thankful that my son is safe from harm.

An Open Letter To My Son

I think back to almost 18 years ago when I carried you inside me safe and secure. The first moments you were outside of my body I worried. That worry continued to grow as you got older.
You may not understand this but I love you today as strongly and deeply as I did the day I knew we created you or the first time I looked in your eyes.

Right now you are in the middle of childhood and adulthood. Your life is filled with so much turmoil and uncertainty right now. If there was a way I could make these life lessons easier for you I would. If I could tell you now what you will realize when you are older I would. If I could keep you safe with my love alone I would.
There are so many Ifs and uncertainties in your life.
I pray no matter what wrong choices you make in your life that you know I love you and I always will.

love always,
 mom

Return to work

I got the call from my doctor today that I've been waiting for. I am going back to work. I have both excitement and anxiety over my return. My doctor agreed to let me try partial days on my good needle days starting June 20. He cautioned me that it might be too much too soon, but how will I know unless I try?

In the midst of everything that has been going on work has always been something I enjoyed and I was good at. Not being there for over 4 months and the changes I have had to make in my life because of my MS has made me anxious about work. What if I can't type, write, dial etc like I used to? What if my thought processes aren't the same? What if what I've done well with over my 16 year career I can no longer do?

I know no matter anxious I am about my return to work, how much fear I have that I will fail I am excited that another piece of the life I had is coming back.

The Miles

The past few days Bob and I have put on many miles. The miles have been made in the car and on foot. 4 days ago we drove 2 hours with the little kids to poppa and grandma at the lake where they stayed for a much anticipated visit. Bob and I then continued another 7.5 hour drive to Calgary. The miles in the car were great, we visited, listened to music, discussed the impending car purchase, summer holidays, CCSVI treatment.
We thoroughly enjoyed our time in Calgary too.  The rooftop hot tub, Hangover 2 movie, the miles we put on in the malls, the hours spent with Bob's brother and family, and of course the MS Walk.

Last nights needle was not a good one, surprising me again with the chills and shakes which I thought were a thing of the past since I haven't experienced that for a few injections. This morning before the walk I was feeling nauseous and tired of not feeling good and not able to use my hand. Then we arrived at the MS Walk in downtown Calgary along side the river. The weather was very cloudy and cool in the morning, but as the start time got closer the skies cleared, the sun came out and I felt the warmth. I felt the warmth from the sun, from my family that walked along side me and also from the crowd of strangers who were all there for the same cause, to end MS. And again I was filled with so much hope.
I never want to lose that hope. We are already planning to participate in the 2012 MS Walks in Regina and Calgary. The walks remind me of all the good I still have. My family, my friends, my health and my hope.

You get what you get

One of my little kids favorite sayings is "you get what you get and you don't get upset". I think it's a great simple and to the point piece of advice. Sadly it isn't always easy to follow. When you are 6 and you don't get the orange cup you wanted, or you are 4 and you don't get to jump on the trampoline first it is hard to not only accept it, but also not to get upset.
At 37 I'm having a hard time with this simple philosophy about life when things don't go your way. 4 months ago I became disabled due to what weeks later I would find out was MS.  I patiently bided my time waiting for the disability from this attack to go away. I tried everything I could to speed up that recovery; physiotherapy, naturopath, an exercise regime, supplements, acupuncture, massage therapy. I was determined to do everything I could to recovery from my MS attack and get rid of this disability.  I was able to quickly accept the fact that I had an incurable disease, but I was not willing to accept any lingering limitations from my first attack.  
Initially the hardest part was being patient. I am not a patient person and having a constant glaring reminder of what doesn't work like it used to was extremely frustrating. Now I find I a more accepting of the patience needed to get through this, but I realize now my expectations may have to change. The "get what you get" part of my wise children's saying is basically saying you have to accept what life dealt you, but the 2nd part of that saying says"and you don't get upset". How can you not get upset?  I want to get upset and I NEED to get upset. Because of this thinking I've gained an appreciation and understanding for the things that upset my kids. When you are 4 and 6 and things don't go the way you had hoped and bedtime comes before your tv show is over, that is upsetting. I think that while it upsets them, they still accept it and try to make the best of what they are given.
I need to accept that for right now things haven't gone my way and I have to make the best of it. But at the same time I am not going to give up trying to do all I can to lessen this disability.  And I am also going to be upset.
I think I have been very accepting of the diagnosis of my disease. That is because when I was younger and my Mom was diagnosed with the disease she spent many years denying it. Looking back on that I think that hindered her ability to deal with and treat the illness. I will not deny I have MS, I will not refuse to inject the Betaseron when I know that it is proven to slow down the progression of disability. I will be conscious of my stress level, fatigue and diet. I will listen to my body.
 
I will accept the get what you get part of this disease but I will not deny my feelings. I'm going to get upset, be scared, feel angry. And maybe in the middle of all of these feelings I will be lucky enough to have my disability disappear and have the full feeling return in my hand. Until then I am getting closer to accepting that this is maybe the best it will be.

37 Years...Young

Perception is so strange.  I remember on my 30th birthday, just days after finding out I was pregnant with McKinley, I felt old.  30 was such a big number coming from my 20's.  In the past 7 years so much of my life has changed.  Changes for the good and for the bad.  This is my 2nd birthday without hearing my Dad say 'happy birthday'.  This is my 37th birthday with my Mom, my grandma and other loved ones. 
This is my first birthday with MS.  I probably had MS when I was 36, maybe even years before, but this year I know I have it. 
I have a new appreciation and perception on age.  37 doesn't seem so old anymore.  I wont mention my thoughts on 40, but for now 7 years after I thought 30 was old, I've come to appreciate the good things that come with age.  I have a wonderful family, terrific friends, great job, and a long and hopeful life yet.

Here's to a happy and healthy year!!

Prayers

"The greatest tragedy of life is not unanswered prayer, but unoffered prayer."

 I don't go to church, but I have faith and I believe.  But sometimes I forget to pray.  I don't forget to get upset when things don't work out like I had planned, but often forget to pray.

Im offering up some prayers:

I pray that my 17 year old will be kept safe while he struggles in life.
I pray that Nuckter has the strength and support he needs to get through that struggle.

I now truly understand the meaning of the word empathy.  Last night after anxiously waiting 3 hours for my son to come home I had to call his Dad.  He was out of town and we arranged for Austin to stay with us for the night.  Austin had other plans.  He lied to both of us, he didnt answer his phone or texts and when his Dad did finally get a hold of him he continued the lies saying he was on his way.  Finally my ex-husband drove home.  As he sat in his driveway watching Austins girlfriend leave and 5 other friends in his house drink his liquor he phoned me.
  

I was relieved  to hear that my on was safe, but disappointed again at his blatant disregard for rules and lack of consideration or respect.  I was also filled with empathy.  I listened on the phone as my ex-husband was in tears stating he was a failure as a parent. 

Empathy is defined as: Identification with and understanding of another's situation, feelings, and motives 
 I identified and understood the situation as I have lived those same situations.  I identified and understood the feelings, feelings of failure, the overwhelming fear that things will not change.  I identified and understood the motives.  We both love this child of ours and want him to live a good life.  

 I will continue to have empathy, provide support and pray.

Road Trip

I was able to get in on a cancellation to the MS Clinic in Saskatoon.
I went with my MRI films and a list of questions in hopes of gaining more understanding and knowledge about my disease. Knowledge is power right?

It was a very good appointment.  I liked the doctor and the RN.  I have spoken to her over the phone several times so it was nice to put a face to the wonderful woman.   The Dr. also ordered a follow up MRI for me to check on the lesions.  I am anxious to see the outcome of that in a few months. 

Something else I didnt realize until after we had left.  The three times I have been to neurologist appointments I have been subjected to a bunch of tests to check my symptoms.  Bob has been there for all three of the appointments, observing each test.  After the appointment he told me that it was great to see the progress I have made in comparison to the other times. 

Another really pleasant surprise was the 2.5 hour drive there and back with Bob.  It was nice to talk about things that sometimes get lost in our busy lives. 
There was nothing but positives from this road trip.  We are also both really looking forward to our next road trip.  We are heading to Calgary June 1 for a little time away, visit with family and to participate in the Calgary MS Walk. 

Good & Bad

My needle days are my 'good days'. The injections are right before bed, but the entire day before I inject I feel good. There is no soreness, achy muscles, sore jaw, tender red injection spot, nauseousness, or headache.

Within 20 minutes of my injection my 'bad days' start. The first symptom is the sore achy jaw and head, then in the middle of the night I get the chills and shakes. Actually standing up is a task because of the weakness. The bad continues when I wake in the morning. There is no rhyme or reason to how long the side effects last, some days I feel better by 11am, other days it lasts so long I begin to wonder if I really have the flu.

It is such a stark comparison between the good and the bad that I feel. I want to do as much as I can because I don't know how bad the bad day is going to be. I find myself watching the clock as the injection time gets closer knowing it is going to bring the bad. I get scared thinking of the stories of people who have injected for years and suffered the side effects the whole time.
Isn't it enough that I wake each morning without feeling in my right hand?
Isn't knowing there is no cure and that one day I may have my second attack enough bad in my life for now?

Getting Older

Nothing ages you quicker than having your children grow up.  My 2nd oldest child is 15 today.  I cannot believe that she is 15.
As a family tradition the birthday person gets to pick the place to go out and eat.  This year she picked Teppanyaki Restaurant.  I love that she chose that place based on a birthday memory from when she turned 8.  I took her and Austin there for her 8th birthday and it was their first sushi experience, plus they were able to enjoy watching the chef prepare the food on the grill right in front of us.  It was one of the first times we started this tradition of picking the special place.  I can still remember so much of that day and I love that she remembers too. 
Because of the sweet and thoughtful girl that she is, she wanted her younger brother and sister to enjoy the same experience and she wanted to share it with them. 

I am ever so excited to give her present. She has been asking about Keith Urban concert tickets and wanting to save up her money for them.  When the tickets went on sale it was while I was in the middle of my diagnosis and attack and being as sweet as she was she didn't make me feel bad when we didnt get the tickets.  What she doesnt know is that I did get them.  She i going to be beyond excited when she sees those tickets.

I only hope that she understands just how proud I am of what a wonderful young woman she is turning into and I am thankful every day for the special bond that we have.

Happy Birthday Tay!  I look forward to many wonderful years of expressing how much I love you and how proud I am of what you have become.

Defining Me

As a Mother's Day gift I recently went to visit my Mom for the day. I brought a lunch, some flowers and a few gifts to say Happy Mother's Day. She was very pleased about the visit.
I was anxious going as it was the first time seeing her since I was diagnosed with MS.

The visit went well, she didn't get too upset or emotional, but I had a really hard time when we went out for a walk and coffee. My hometown is a small town and everyone knows everyone. During our outing it didn't matter who we ran into the conversation was the same.
"This is my daughter, she has MS". It could have been a distant relative, a former classmate, one of my Mom's neighbors.
My Mom was defining me by my disease. It was very disheartening and I realize that is not how I want to be known.
I have many ways that positively define me. I don't want MS to be the focus of who I am. That does not mean I will hide the fact I have the disease. I will always be honest to myself and to those who love me about this illness, but I will also not diminish the greatness I have in my life by leading with the "I have MS". Nor will I ever say "This is my Mom she has MS."

I wished she would have said "This is my daughter, she came down to celebrate Mother's day with me."

I have MS, MS does NOT have me.

My new shoes

During one of my google searches on MS I came across this. I was saddened by the fact that I could understand many of the MS symptoms without having to put myself in these shoes to understand.


When We Say We Can't do Something Because We don't Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below...
 

Painful Heavy Legs

Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

Painful Feet

Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

Loss of Feeling in Hands and/or Arms

Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

Loss of Feeling in Feet and/or Legs

Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

TN (Trigeminal Neuralgia)

Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

Uncontrollable Itching

Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

Tingling

Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling

Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

Shots

Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

Side Effects From the Shot

Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

Trouble Lifting Arms

Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

Spasticity

Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

Poor Hearing/Buzzing in Ears

Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzz zzzzzz

Balance and Walking Problems

Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee

We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations

Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

Pins and Needles

Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

Dizziness (Vertigo)

Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Fatigue

Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

Cognitive Function (Brain Fog)

Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

Bowel Problems

Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

Burning Feeling

Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

Intention Tremor

Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s)

Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis)

Smear vaseline on glasses and then wear them to read the newspaper.

Memory Issues

Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop

Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

Depression

Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear

Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

Swallowing

Try swallowing the hottest chili pepper you can find.


Then Finally...


After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

Show & Tell

Its been awhile since I've blogged and it's overdue.  I can feel all my thoughts and feelings building but haven't expressed them.  
I find just blogging and typing them out,seeing it in black and white makes things calmer for me.

This weekend was Mother's Day.  I had some wonderful moments and some hard ones too.  I choose to focus on the good.  Here is my good:
I watched my 6 year old daughter play her original composition piece at her piano recital.  And she nailed it! 
I had breakfast in bed from the kids.
I was spoiled with lots of wonderfully crafted homemade gifts from daycare and school.
I had a nice coffee visit with my soon to be 15 year old. 
I also had a great walk/bike ride with three of my kids to the playground, where I sat on the bench watching children that have grown up so fast right before my eyes.
The sweetest moment was my 17 year old that came for supper after work.  He bought and wrapped a gift.  He not only brought me a gift but he brought me a much needed hug too.  He loves me and he showed me that love.  He got it, it wasn't how much money you spent or how elaborate the gift was, it was that he took the time out of his life to think of me and love me.
Thank you

Fellow MS'er

I have been fortunate to meet two people diagnosed with MS recently.  Last night Bob had a work function where one of the women introduced herself to me and said she too was diagnosed with MS.  She had two attacks several years ago and has been doing great.
I am thrilled to hear  these kind of stories

The other MS patient I met was a few weeks ago through the MS Walk fundraising.  He is from my home town and we have quite a few similar friends.  He was diagnosed just days before me.  And not only does he have the same neurologist he has the same family doctor too.  Even our children share similarities.
These conversations have done alot to calm me and provide me with comfort and hope.  There are probably a lot of people with MS that dont LOOK like they have MS. In 10 years I want to be one of those people.

Overwhelmed

Last night was a night filled with emotion.  It was the MS Rock Cabaret.  We were in a room surrounded by friends, family and strangers to raise money for a cause that has become so important to me.
I was overwhelmed with the good emotions.  I saw first hand what it means to be loved and be of significance to others.  My friends and family helped out so much last night to make the night a huge success.
I still remember less than 8 weeks ago when I was diagnosed with MS and even more recently decided to participate in the 2011 MS Walk I set my goal at $1,000.00.
I am beyond excited that we have shattered my initial goal and even surpassed the $10,000.00 goal that I set just to appease my husband.  Never did I think we would hit that mark.  Am I happy to be proven wrong.

Tomorrow morning is likely going to be another day filled with emotion, but I know I will not be alone.
Having been diagnosed with MS has been hard, but knowing I am not alone and being shown there is hope makes it a little easier.

Funk

Today was Easter. It was supposed to be a day filled with family, fun and happiness. Instead because it was the day after my needle I was sick and nauseous. I struggled to feel good and try to make the day special. I planned a special meal for the family. The Easter bunny brought new bikes for the kids to ride.
I found out today that when my needle makes me sick my body doesn't deal with it that well. My hand didn't work well today. I was very grouchy about the fact that the medication that is supposed to help me live with MS is also making my life hard.
I managed to cut my hand, burn my finger, break a canister and gouge the hardwood floor all in one morning.

I need to dig deep and find some positives in my life today. I am feeling nothing but an overwhelming sense of hopelessness. I've spent time today trying to imagine what my life is going to be like in the next 5 or 10 years. I do not like some of the thoughts I've had. My life could be a lot like it is right now, but it could also be a lot different. A lot worse.

I'm very thankful that tomorrow is my Good day. I so need a good day!!