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in their wake in the form of plaques or scar tissue, so that even though the inflammation is gone and the lesion is no longer active, you will never return to that “baseline.”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.
Sunday, September 25, 2011
Thursday, September 22, 2011
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??
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??
Tuesday, September 20, 2011
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.
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.
Monday, September 19, 2011
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.
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.
Monday, September 12, 2011
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.
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.
Thursday, September 8, 2011
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.
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.
Wednesday, September 7, 2011
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.
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.
Tuesday, September 6, 2011
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.
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.
Friday, September 2, 2011
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.
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.
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