Among my mother’s photos and other treasures, I found this framed certificate of her father’s first communion and confirmation.

Charles Evans
made his First Communion
on June 7th, 1909.
Baptized ______ Confirmed June 7, 1908
Fr. E.M. Connolly, O.M.I

He died in September, 1972, just before I learned that he was my ‘real’ grandfather. (My parents always told me I was adopted but I didn’t know that my biological mother was my mother’s sister.) He always brought us a big bag of Dilly Bars from Dairy Queen when he came for his rare visits.

Two years ago today, my mom’s funeral was at St. Augustine’s Church. One of the things I’m most happy about is that she and I spent time together planning her funeral. My brothers were amazing. They helped out with her care, preparing food and coordinating the supports with palliative care. I recognized that there was one thing I could do that would be important to her and to all of the family, as I had experience with event planning. And five years before she and I had worked on dad’s funeral together.

So, in August, we started the discussion each time I went to visit or had a ‘shift’ caring for her. She chose the music, the pallbearers, the eulogy, the readers, how she wanted the altar to be set up with one large bouquet of flowers by the lectern. I also asked her what she would like people to know about her, such as things that she had achieved. Of all the incredible things that she had done in her life, I was really touched when she told me that being chosen as as the youngest ever swimming instructor for the Vancouver Sun’s Sun Ray club was one of her greatest achievements. Among her treasures in the boxes of photos, I found this photo from the Vancouver Sun.

This past week has been a most positive experience, working with Dr. Ernst Schmidt at Pacific Spirit Dental Centre . With 32 years of experience, great equipment, friendly staff, and a flair for diagnostics, I am in great hands. He recognized that I have been doing what I can to coordinate my own care but that I really need a ‘quarterback’ to make referrals and to maintain objectivity.

On Saturday evening I reviewed the assessment results I received by e-mail. It was thoughtful and you could tell he had spent a lot of time thinking about what was going on. A few more back and forth e-mails and scanned reports, and we are moving ahead with a plan to rule out possible complications. His approach is to opt for minimally-invasive interventions and to note changes, as they will all be informative.

We reviewed my digital panoramic x-ray on Tuesday. I learned that I have a very long styloid process. They’re long on both sides but particularly long on the right. Dr. Schmidt said it was the longest one he has ever seen.

I made it to the reception for the Women’s Campaign School at SFU, Surrey campus last Friday. Sandy Mayzell contacted me a few days ahead to ask me if I’d be there. It was an additional incentive to attend knowing I could see her again. Sandy was inspired to create a project with lots of tentacles, “Dancing with the Octopus.” Sandy is a documentary filmmaker. She has unbelievable energy and has travelled across the country meeting with women in politics and with young women to encourage their involvement. Lots of fun and creativity here. Check out her website and join her facebook group. And if you want to see more women in politics, you could donate to her not-for-profit society Educating Toward Change .

I went to see a new dentist yesterday for complete oral care. He did a great assessment and is really knowledgeable about facial pain, trigeminal neuralgia and multiple sclerosis. He did not want to be biased by the other information and reports I had, so he asked me specific questions and will spend time thinking about what’s happening. His approach is to start this way and gradually add more information to complete the picture. He’ll send me a preliminary report within a few days and we will establish a treatment plan. He asked me if anyone had done a ‘differential diagnosis’ for me —  I hesitated because there have been lots of ‘diagnoses’ — nobody has done what I would consider to be a differential diagnosis. So, that’s where he’ll gather objective information and then he’ll review the many inconclusive reports I have. He is smart, treated me like I was an intelligent human being, and I have great confidence that we will manage what’s going on. The very best part was that he seemed interested in figuring out the complex picture. He does acknowledge that my tooth clenching at night is a problem and the ideal would be to have me not do it at night without a mouth guard. The fact that the NTI device has had such in impact on my pain was helpful to him.

My other dentist is a very good dentist and I would stay with her if I didn’t have the complex issues that have arisen. What I need now is a great dentist and I think I found him, thanks to my friend, Adam.

The deep pain in my face is gone. The remaining pain/discomfort is around my upper lip, upper buccal gumline and generalized odd feelings in my face. Each day is a bit better and I don’t have to worry about food temperature or acidity any more, which is nice. And tomorrow night I’m going to the opening reception for the Women’s Campaign School — hurray!!!!

Daniel and I went up to Mountain View to visit my mom. Today is the 2nd anniversary of her death. We cleaned up her gravestone as well as grandma’s and left her a few things.

Then we went over to the Evans plot — four side by side plots that my great-grandfather bought in the late 1890s. This is where my grandfather is buried along with his parents and several siblings. Daniel had brought an edger to reclaim the border from the overgrown grass. We are preparing to bury my mother’s sister, Betty — my biological mother — there when she dies. She is 87 now and in a facility. Her father died 40 years ago, so we can bury her with him. We also have the ashes from the third sister, Barbara, who died in Ontario. We will bury her there too when Betty dies.

A nice letter from SPHF.

I saw neurologist #3 on Tuesday morning. I booked the appointment with him as I believed it was his responsibility as a professional to review the MRI that he ordered. He was obviously in no rush to see me as I had to wait for almost three months for the follow-up appointment. He hadn’t viewed my MRI images and opened the radiology report when I was in his office. At this point, he doesn’t think I have MS because of a lack of observable clinical symptoms, like changes in vision or reflexes. So, that is potential good news, i.e., not severe MS. It still doesn’t explain the MS type lesions seen in the MRI or my constipation. He told me that constipation had nothing to do with MS. I tried pulling a book out of my briefcase that I had with me, written by a doctor with MS, but he wasn’t the least bit interested and gave me a dismissive gesture with his hand. He told me that since I was going to the MS Clinic in December, he would arrange to have me seen by the top MS neurologist. I told him I’d be happy to see Dr. Traboulsee. He’s made similar promises like that to me in the past, so I will not hold my breath. It seemed odd to me that a neurologist would ‘brag’ about his influence as he had done nothing to help me other than botox and poorly-written and lean reports. I don’t think he ever believed I was in pain. Regardless, the appointment in December will tell us more, one way or the other. He didn’t think that the mouth/facial pain was associated with a central nervous system problem, as dental manipulations or appliances shouldn’t make any difference. He did tell me that the NTI could cause inflammation at the TMJ (temporomandibular joint) and to be aware of that. I let him know that I did not plan on using it for the long term.

As for the teeth/mouth pain. I am now off medications — last pill on Monday evening. I have pain that feels like a mild burning pain that is localized but not runaway nerve pain. I can eat hot oatmeal and drink tea now. I took a closer look at the molds made from my teeth that my dentist used to make the mouth guard with in June. I am not surprised that I have had problems for years. I can’t recall my old dentist ever checking my bite again, even when I told her I had discomfort in my lower jaw.  All this recent pain has been around the third tooth from the right on the bottom . When the oral medicine specialist whacked on that tooth, the nerves fired above my lip and around my nose.

I have made an appointment with the prosthodontist for October 29 to make a plan for fixing this bite. I had seen another dentist in July who was eager to replace the upper and lower crowns but he seemed a bit too eager to get my insurance coverage information and he didn’t have a plan for a bit more cautious approach. In hindsight, I almost wish I had done it then but I needed to be sure that it would be the right thing to do. It’s not worth it to take risks with this type of pain.

It is so odd to feel full of hope again. This whole situation has been a nightmare.

On September 24, I went to see the prosthodontist. He wasn’t sure about how to proceed as he read the report from the oral medicine specialist. He put a temporary bond on my lower molar and had a couple of suggestions for minimizing the sensitivity in my mouth. I think he had hoped for more information to work with. He asked me to let him know if the bond helped at all. He would be out of town for the following two weeks.

When I got home, I had a copy of the oral medicine specialist’s report in the mail. It was disappointing and inconclusive and he suggested waiting to do any dental work based on the outcome of the MS investigation. What bothered me about the report is that he messed up the history and missed about two years worth of information. This is the problem with specialist appointments now. If your case is complex — and he had been told in the referral that mine was — you don’t get the time you need. He told me he wanted to hear my history from me in my own words, but he rushed to the exam without having heard the salient points.

What was interesting to me is that the bond that the prosthodontist put on did help and I ate my lunch with a bit more ease. This got me thinking. Pain from a lesion in the central nervous system should not be affected by dental manipulations. In  fact, the neurologist had been puzzled by it in the past too.

My pain was usually worst in the morning and I would often do better later in the day. I wondered about the efficacy of the night guard I had. Perhaps the tooth clenching at night had something to do with the pain in the lower tooth. So — test trials were on. I modified a soft mouth guard I had to fit over the front teeth only. I used it on the night of the 25th and 26th and noticed an improvement. I stopped using the lidocaine ointment at that time. Then I made an appointment on Saturday September 29 with a local dentist who fits the NTI device. I started to notice a difference from the first night last Saturday. I have used it now for 7 nights and continue to be encouraged.

There are potential problems with the NTI device if you clench with the front teeth. I hope to need it only for the short term. NTI stands for Nociceptive Trigeminal Inhibition. The trigeminal nerve is responsible for sensation all over the face and the lower branch of the nerve controls the movement of the jaw.

Two weeks ago, I was in pain all day. I couldn’t walk without the vibrations triggering nerves in my face around my nose and upper lip. When eating, these nerves would fire and when it got big, it involved the lower tooth as well. These could be triggered by talking as well. As I told the prosthodontist, all the pleasure in my life was gone — socially isolated, unable to eat or drink or talk without pain, even on drugs.

Today, I have been able to eat and do things around the house, talk to my husband — getting pretty close to ‘normal’. I was able to go on a couple of long walks this week.  I still have a deep, achy pain in my mid-face, but there is no runaway nerve pain. I am still on drugs and will come off when I feel a bit more confident. I’ll book a follow-up with the prosthodontist. I suspect that three poorly shaped crowns from the dentist I had up to June 2010 has led up to this problem, as well as my tooth clenching at night.

Next steps — book an appointment with the prosthodontist and write a response to the oral medicine specialist — and focus on the healing of the nerves in my face.