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!