On Monday, we met with Dr. Kaufmann for a pre-surgical consult. He offered us a couple of choices, including another rhizotomy. He wanted to make sure that we considered all the risks and the understanding that the nerve cutting procedure is irreversible. If he cuts too much, I could be left with some significant deficits. He also said it would be possible to repeat the balloon compression rhizotomy and that gave the possibility of some very good long-term relief. After some tears and re-thinking about the risk to my good eye — my right eye — we opted for the rhizotomy.

At Tuesday’s surgery, all went well. Dr. Kaufmann reported to Daniel that he was able to inflate the balloon to the maximum and keep it inflated 3 minutes each at .6 .7 and .8 mL. I came out of the general anesthetic early and was up and about in a few short hours. I was out of pain. I was not as numb as I expected to be and the lack of increased numbness worried me a bit. But there was no pain, so I was encouraged. As I was doing so well and not in pain, I was able to leave the hospital the same day.

Daniel and I had just finished dinner in our hotel room. I leaned over to reach for the newspaper and had an electric shock up my forehead. Uh-oh . . . I knew from that moment that this did not bode well. I emailed Dr. Kaufmann and the nurse, Olive. We got a quick response and were encouraged to go in for another appointment the next day.

In the morning, I had another big shock as I washed my face, all around my eye and up my forehead. Ouch. We met with Dr. Kaufmann and talked about options again. He was concerned about the fact we had travel considerations and lived in Vancouver. But we asked him to think of us as living in Winnipeg and to make a plan from there. Fortunately, the whole team stepped up and reorganized surgical schedules and appointments to give me an appointment on Monday morning.

We’ll be doing the Dandy procedure. Others call it a total sensory rhizotomy . It will involve cutting into my skull behind the ear and severing two-thirds of the nerve. It will lead to total numbness, have possible complications with my eye, as well as reduced jaw opening. So, if I have to puree food, c’est la vie.

Tuesday, Wednesday and Thursday were very tough days. Lots of pain breakthroughs as bad as pre-surgery. It felt like my face was lighting up like a neon sign with the electric pain shooting through! Since yesterday morning, I’ve been doing well as the drugs seem to be holding the pain back.

In the meantime . . . it’s been an active week here in Winnipeg with the Grey Cup in town.

I wanted to do a brief update. I am still having occasional breakthrough pain, sometimes after eating something cold and other times just randomly when I move my head or bend down. So, I walk around like a stiff, old lady.

I’m up to 600 mg of Lyrica a day. That’s the maximum safe dose. I’m a bit less dopey than I was initially. When the pain breaks through, I breathe deeply and say to myself, “this will pass.”

The best thing about this last bout of pains is my ability to eat! I can still enjoy food as I don’t have pain triggers in my mouth like I’ve had with previous exacerbations.

We’ll have a very busy day tomorrow organizing the things we need to bring to Winnipeg.

I’m holding on. Thanks for all the good wishes and warm thoughts.

—–

Afterthought . . . I realized this morning that I hadn’t posted a comment about another thing I’m grateful for. I am able to sleep through the night without being woken by jolts of pain. So, being able to eat and sleep has made this part of the journey a bit easier.

I recorded this video last night. The pain situation has been much the same today.

I am working on getting all the pre-op tests done and sent to Winnipeg. Yesterday, I saw a GP and got all my orders for blood work, chest x-ray and electrocardiogram.

This morning, after fasting, I went for all of my tests. It was surprisingly efficient with minimal waits. The blood work should be available online very shortly.

I have my last meeting tonight with the health mentors I’ve been working with for over a year. They have been a great group of students — nursing, medical genetics, occupational therapy and dentistry. Tonight will be their first time seeing me in pain. When I first met them last year, I had just come back from Winnipeg and was having difficulty opening my mouth wide enough to chew well. So, they’ve never seen me in pain. They’ll get their chance tonight. I may only have one or two pains while they’re here but I would like them to get a sense of how debilitating it is.

I am receiving nice messages from unexpected places, including the people from my exercise class! The benefits of exercise plus the social network has been a great plus in my life. I am grateful for the kindness extended towards me.

As for the surgery on Tuesday . . . I am nervous to have my skull cut open to sever the nerve near the brain stem. But there is nobody else I’d trust do to it. Dr. Kaufmann is a great surgeon and a caring human being.

I received a phone call this morning at 6:16 am from Dr. Kaufmann, my neurosurgeon in Winnipeg. While he expressed some disappointment that the last rhizotomy didn’t keep me out of pain for longer, I wanted him to know about the wonderful things I was able to do in this past year. So, I’m focusing on gratitude for this last year and all the things I was able to do.

In the photo above, Daniel and I had cycled to a friend’s place to celebrate his birthday on August 23. We both look happy and healthy and we were.

Over this past year, I have been able to:

• enjoy a full lovely Christmas dinner
• dress up for a New Year’s party in sequins and high heels
• be a volunteer patient and a health mentor
• start up and facilitate a group for people following The Wahls Protocol
• be the team captain for our team at the MS Walk
• exercise regularly twice a week at Hillcrest Community Centre with Healthiest Winner
• enjoy the swimming pool and sauna at Hillcrest
• shop regularly at most of the Vancouver Farmers Markets
• learn to make great kombucha
• make my own dill pickles, kimchi and sauerkraut
• ride my bike in good weather
• entertain some friends with small dinner parties
• enjoy a long weekend at Saturna at our friends’ beautiful cabin
• have enough energy to get involved in politics again
• re-connect with some of my political heroes who are now in the federal cabinet
• start working again on a new business venture with a new business partner
• engage in some speaking projects as well as some media for trigeminal neuralgia
• teach second year medical students in Portland, Oregon, about my experiences
• meet Dr. Terry Wahls at the Canadian Neurovascular Health Society conference
• get really involved in the local campaign to elect our Member of Parliament
• enjoy the feeling of knowing the Minister of Justice, who is our MP
• be so completely pain-free I almost forgot about the multiple sclerosis

I have a lot to be grateful for. And, of course, the most important person in my life is my dear husband, Daniel. He has been with me every step of the way. He is an exceptional human being. He is my love.

It has been a most interesting week.

A week ago, I took advantage of a free coaching session offered by Sarah Ramsden . In that session we discussed things that were holding me back from doing everything I want to do while I can.  I told her about my fear of the pain of TN and the fact I had some small hints of pain over the past few months.

After that session, I started making some plans. I even considered booking a pleasure trip, maybe even to Hawaii as Daniel has never been there and I have been so strong and healthy, especially in the last 6 months or so. We started planning a small dinner party as doing that had always been a great source of pleasure for me — good food, good conversation, interesting people.

On Friday I went to work out at Hillcrest Community Centre, then went for a swim and a sauna. I was feeling great and determined to move on with my life, and put the fear behind me.

I was aware that I was regaining feeling in my face, sort of like freezing coming out after a dentist appointment. This has been happening for a while and I knew it was because the trigeminal nerve was healing after the rhizotomy. I believe that all the healing that is happening in my body has also led to the rapid healing of the nerve. I’ve had improved sensation in my feet and my GI problems are under control.

On Saturday, I went to the market, then in the afternoon had a productive meeting with Connie, my business partner. That evening, as Daniel and I were brushing our teeth before going to bed, I had a big pain through my face and up to my forehead. It felt “thin” but it was intense and I dropped to my knees.

I was OK for the day on Sunday, but at 11:00 while lying in bed, I had another big pain, similar to the one the day before but a bit more intense. I took 50 mg of Lyrica and went to sleep.

Monday and Tuesday were much the same — more pains and more drugs. I managed to keep my commitments to the Wahls Protocol support group that I facilitate. And I went to the bon voyage party at Heritage Hall for my neighbours, the Everitts. I’ll blog about that later. However, I was pretty dopey but pleased I could be there.

Wednesday, for Remembrance Day, we went to Victory Square with Team Jody. It was our first chance to see Wilson-Raybould after the cabinet appointment. While many of us looked exhausted from the campaign, she looked vibrant and happy. (If you are unfamiliar with this amazing woman, her wikipedia page is really informative.)

I had a big attack as we were running to catch the bus after the ceremony wrapped up. I stood at the doorway of the bus unable to move. The bus driver waited as my husband explained that I was in pain. After the worst passed, we got on the bus. I was sobbing. It was embarrassing.

Later that day we went to a Chor Leoni concert called “Brothers in Arms.” It was an exquisite performance and very moving. Afterwards, the vocalists mingled with the audience. I had a chance to introduce myself to the very kind retired neuroradiologist who sings bass in the choir. He was the first person to identify the multiple sclerosis and to confirm the visibility of the lesions causing me pain on the first MRI that I had . He remembered me and our correspondence. I wanted to meet him face-to-face and shake his hand as he was so kind and generous with his time.

As we tried to go to sleep, I had a bout of the most serious pain to date. It was wave after wave of intense pain through my forehead. I went to sit in the den for a while. I wrote an e-mail to my team in Winnipeg asking for help.

I’m very dopey and full of drugs right now. I had two bad bouts this morning. The first was in the kitchen as I ate my breakfast. I ended up sprawled on the floor wondering how I could keep going like this. And about 15 minutes later I went to pick up the mail. I had my camera with me, so I took a short clip after the pain had passed.

So, what do I do now? Maybe I need better drugs or a different drug? I’m getting close to the maximum daily recommendation. I have messages for help to all my team.

What a day for Jody! And a great day for Canada!

There are many of us, women and men, who have worked towards greater representation of women in government. This new cabinet reflects much of the diversity in Canada.

There is a lot of work to be done and some challenges ahead. But it was a great day today.

On the night of October 19, Jody Wilson-Raybould was elected in our new federal riding of Vancouver Granville. As tomorrow is the day that the new cabinet will be sworn in, I wanted to post this before the announcement. Most media reports are suggesting that she will be appointed by Trudeau to cabinet. Over the course of the past 15 months we’ve had many chances to spend time with her.

I was given some special honours during her campaign. I was asked to say a few words of welcome at her campaign office opening. And she asked me if I would be willing to write an endorsement for her. I did with great pleasure. It was astonishing for me to see who else had been asked. I was seriously outclassed as there were several prominent citizens there!

She even tweeted my endorsement just before the election.

Last year, after being acclaimed as the Liberal Candidate, Jody had a chance to introduce Trudeau at a rally held at Douglas Park. It was the first political rally I had been to for a long time.

Daniel and I were inspired last winter to go out door knocking for Jody so that we could see Stephane Dion again. We had been delegates for him at the 2006 Montreal convention and it was an amazing experience.

I had the chance to invite Jody to the WAMS (Women Againts MS) event where I spoke on March 31. It was there she learned about how prevalent MS is in Canada. She wanted to join my team for the MS Walk. How could I say no?

Jody is such a down-to-earth, fun-loving person that she is a pleasure to be around. It was so much fun to have her as part of our team, the Wahls Warriors. I realized that she had so much to offer our community and our country.

As the election date drew closer, Daniel and I got more involved. He worked on the sign team and a bit in the office. I did little bits here and there. Jody and her team worked so hard for over a year to get to get to know residents and communicate the Liberal vision.

And on election day, our house was a ‘home centre’ for volunteers where we spent all day getting our vote out. It was go, go, go all day. At 7:00 pm, when the polls closed, I dropped off a couple of volunteers to do the count at a local polling station and heard that a Trudeau victory had been declared. I started to cry.

Daniel and I had a bite to eat, then went to Jody’s small celebration party where we waited for local results. When they finally came in, a photographer for the Vancouver Sun snapped these shots of us.

And one of Jody’s campaign team sent this shot to me.

Ten years ago, we did everything we could to prevent Stephen Harper from becoming Prime Minister. It was an incredibly emotional experience to be part of such a large victory with a majority government, knowing that Harper was gone.

And before we left to go home, we asked our new MP for another photo while we told her how proud we were of her! She ran a clean, honest, and respectful campaign.

Thank you, Jody, for your willingness to step forward and lead.

I had the great pleasure of meeting Dr. Wahls at a conference held here last month, sponsored by the Canadian Neurovascular Health Society .

As soon as I heard she was speaking, I signed up. According to the conference organizer, I was the very first person to register. (For a nice summary of the conference, Joan Beal wrote up a post about it. Of course, that was another thrill for me — the chance to meet her! She is a true champion and very smart woman and I was really glad she attended.)

The day before she spoke, I found myself face to face with Dr. Wahls. I desperately wanted to know how to get across to people with MS that it’s worth trying her diet. She told me that I just need to accept the fact that some people are so attached to their foods and habits that they will resist. The best I can do is to encourage and set an example. But it continues to be very difficult for me to watch others in the MS community in decline while I continue to improve. No fatigue, able to work out, able to see clients again . . . I want this for everybody.

It was wonderful for her to have the chance to continue spreading the word about her own amazing story and others’ successes by following The Wahls Protocol.

After the talk, Dr. Wahls had a book of The Wahls Protocol signing in the hallway. I had mentioned to the audience that we have a Wahls Protocol Support group in Vancouver, and I encouraged people to talk with me if they wanted more information. When I went out to the book signing, there was still a long lineup. I waited until the end so that I could talk with Dr. Wahls.

Dr. Wahls was so generous with her time. She answered everybody’s questions thoroughly. I first mentioned to her that I had been in Marshfield, Wisconsin at the same time that she was there. She was a physician at Marshfield Clinic and I was doing my clinical fellowship.

I talked to her about the drug I have been taking for two years. The natural way to promote the antioxidant NRF2 pathways is through diet, exercise and stress reduction — all parts of The Wahls Protocol. I considered the side effects — which for me, were minimal — the recent cases of PML, and the recent discovery of the lymphatic system existing within the brain. After discussing a bit more with my husband, I decided to discontinue Tecfidera.

I bought another copy of her book and had it autographed. I’ll use this as a fundraiser or a gift for members of our local support group. I was really pleased to see how many of our group who attended the conference.

I left the conference early as there was election work to be done . . .