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.