Advent-ure in the Busy Season

These fun little Nutter Butter Santa cookies represent the extent of my Christmas baking, and that's really okay. The tree went up over the course of a few days, thanks to Laura who assembled it earlier this week and then another day after school dragged out the boxes with decorations in. The lights went on Friday night, the ornaments yesterday. I enjoyed looking at every ornament this year, remembering who they came from or which of the girls had made them. No presents are wrapped yet. In fact, I am not even sure if I have all the gifts I need to have by Christmas. Cards are not ready. Liz is drawing our card this year--in case you don't get one, it's a picture of a fairy (or an elf?) sitting on the ledge of a rectangular box and it says "Merry Christmas." Have not taken a photo of the kids or of the family to send out with the cards, so that might not happen. Also I have not written a Christmas letter like usual.

It's not at all that I don't want to do these things. The difference is that this year I have done some things in the Advent Season that in the past I did not take enough time for. Laura and I went to the Madrigal Dinner on Dec. 5 in which the Senior High commons was transformed into a castle and we were there for the feast. We, of course, had a band concert for Liz and a choir concert for Laura. The other night we went to see a performance of "White Christmas," which was so well done and inspiring. We also adopted a little girl who needed presents under her tree, had a Secret Santa event at the hospice office, and went to a church potluck today and sat with people we didn't know but now do. Tomorrow Liz and I are helping with the Confirmation project of adopting a family who is having a hard time this season, shopping for and wrapping gifts to give them from the proceeds of one single bake sale held a couple weeks ago.

The rest of it will all fall into place. We'll see wrapped presents under our tree on Christmas morning, news and wishes of the season will go into the mailboxes of friends and families (maybe extending the season a little beyond the Dec 25 date). We will travel to southern Wi and spend time with our families and will rejuvenate our relationships and our connections with them in a whirlwind of Christmas spirit. There's a lot to appreciate about the season of Advent, and this feels way better to me than it has in the past...

Lame Blogging Accusation

This week a person who knows me very well and can hassle me about such things if she wants to told me I am a lame blogger! The fact that she, and maybe others, actually checks my blog from time to time is humbling to me. I have been aware for many months now that I am not keeping up my end of the bargain here--I got well, my life returned in its old familiar form, and I just QUIT writing! Then today my daughter Liz went to a writer's workshop where an author spoke to the students and basically said that if you want to be a writer, then you have to sit your butt down in the chair and WRITE. Actually, I guess he used a more colorful word to express that sittable part of the anatomy, and that did impress the teenaged audience. And it impressed me too, because although I quite often THINK about writing on my blog, I am actually an incredibly lame blogger.

The name of the blog still fits, too. I am actually Beyond the Pillbox. I still use a daily one just to remember to take my allergy pill and my vitamins and stuff, but I don't carry it around with me, and it has one opening per day, unlike that industrial strength one I used during what I now refer to as my "lost year" or my "black period." Recently I had lunch with my friend Sarah and she suddenly said something about it being 1 o' clock, and then quickly, "Oh yeah, you don;t have ot take medicine at 1 pm anymore!" Life after Trigeminal Neuralgia is really just full of normal experiences which don't always impress me as being that interesting to other people. It continues to amaze me that I can reflect back to a certain place in time not so long ago when life was really small and painful for me. I cannot impress upon you how happy and content I am that it is not like that anymore. Liz just reminded me that she achieved the 9 month mark for her driver's license, so all her restrictions are off and she can drive as many people as she wants to. That's a big deal when you are 16. Her milestone reminded me that I am now less than a week away from my own 9 month anniversary of my MVD surgery...how time flies when you're living a normal life.

And that's something to blog about.

"There's a HORSE in our yard!"

As a little girl I really liked a certain horse show on TV. I think it was called Fury or something like that. It was in black and white and I remember it being on early in the mornings before school. I have never been horseback riding, only knew one family that had horses (the Murrays had a horse named Ginger, I think), and in fact was a little intimidated by them (and still am to be honest). But I loved that show. Anyway, even though I am not a horse person, I found it entertaining and fun a couple mornings ago to be awakened early by the dog barking and howling only to find that this commotion was due to a visiting horse in our yard!

This horse was visiting just because she could, I suppose. Her electric fence was off and she took full advantage by stepping out of her enclosure, wandering away from home and coming to our place. She relieved herself in the front yard, took a hunk out of a pretty new seedum that I planted this year, ate some phlox and tried to make friends with us. Liz found her owner and in the process we met our neighbor from about 1/2 mile away, and Laura offered her babysitting services for her 9 year old daughter.

So, now we can add to the list of unusual sightings we've had in our yard over the years---turkeys, deer, bear, neighbor's giant pet rabbit, dogs, porcupine and... horse. Living in the country always provides something new to appreciate.

Randomness

Almost every day now I think I should write on my blog. Once in a while I actually intend to do that, but I have not followed through until now. I wonder, what interesting things do I have to say that anyone would care about? Life is becoming normal again, which means that it's good but also that it's busy and time is passing quickly and there is a lot to be done every single day. So, taking time for writing feels like something "extra" and that means I leave a lot of thoughts swirling around in my head on a regular basis...

Being back at work is a good thing. Hospice work continues to offer a mix of ways to be helpful to patients and families as well as to my coworkers and the agency in general. There is a big gaping hole there, though because my friend Staci has moved away now and she was always a constant bright spot in the day for me before. She is still a bright spot, of course, but now it is through the voice mail messages, emails and occasional texts she sends me. I just miss her, I guess.

The summer has been off to a nice start for the kids. Each of them had a nice enriching opportunity already--Liz went to the Wisconsin Leadership Seminar at Carroll University for a weekend and Laura had a week at Adventure Camp. Both of them came back with new insights and some big self-esteem boosts (not that either of them is lacking in that area thankfully). Liz is working part time at the Friendship Farm CSA and looking for another part time job as well. She has a gas tank to fill now! The old/new car has been very helpful already in relieving me of transportation duties in and after my work days, and she has definitely not gone way overboard on the social access it now gives her! Maybe that is still to come, but it seems we are a family of homebodies, and both girls like their downtime at home.

My flower beds are all healthy and flourishing and not needing a lot of attention, which is good because once they are weeded and mulched I like to just enjoy them and not work in them very hard. I did a little bit of dividing and filling in some blank spots earlier this summer and it all looks good. I had an idea of starting a new bed underneath the gigantic pine tree in the front yard along the driveway, but I think I have opted not to work that hard this summer. The pots are thriving too and I think we are actually going to get a few tomatoes from the plant Laura started from seed during the school year.

My inaugural bike ride last night included a rain shower, so I am hoping not to do that again. I just found out today about two trails nearby--one at the Mead Wildlife area and the other at the McMillan Marsh, and I really want to check those out this summer.

I am reading a Maeve Binchy book right now, called Heart and Soul. I got turned onto Maeve in my 20's with Light a Penny Candle, and I still love the way she weaves a story. Usually all the characters in her books end up being acquainted with one another in some way as all the loose ends get tied up. Plus, her books are always set in Ireland, and then I get to travel vicariously.

My book club (oh how I love it) has a daunting task ahead of us with the choice of the Doris Kearns-Goodwin biography of Lincoln, and I really want to read it but have not been able to make the commitment quite yet. I did read and thoroughly enjoy Prodigal Summer, by Barbara Kingsolver and Coop by my favorite Wisconsin author/chicken farmer/volunteer firefighter, Michael Perry. I want to read Jane Hamilton's new book, too, and if I like it I may just send her another note in care of the Rochester, WI Postmaster. She wrote back to me years ago after I wrote a "fan letter" and now her writing has faded away because apparently the ink was not permanent.

When Laura was at camp, Liz and I watched a ton of movies, the best ones being The Visitor (about a man who comes to his seldom used NYC apartment and finds someone living there) and Changeling, which was just sad and frustrating. I also saw Doubt a while ago and thought it was brilliant. And in an effort to introduce Liz to a movie that made quite an impression on me as a young teenage babysitter with the late night movie on a black and white TV while waiting for kids' parents to get home, I rented The Beguiled, with Clint Eastwood and Geraldine Page. It's all about the mushrooms. That's all I am going to say, Mistah Mc Bee.

Outcomes

I could not have asked for a better outcome. I am almost 3 months out from my surgery now and I have my life back--whole and intact. Last week I was offered and accepted my full time hospice job again. My re-orientation and transition back to work has gone well, and it's gratifying to be welcomed back by my coworkers and the voices (those on the phone of people I have only "met" that way). My memory is good, I have energy, I don't need naps, and I have no pain. It's a

blessing every single day to fully realize how fortunate I am. There were so many times during the past year when I sat with unknowns and wondered what would happen. Now, it seems like I gained much more than I lost during that time...a change of perspective and ability to see that it was just a trying period of time that passed, as all difficult things do eventually.

Yesterday I talked to the very, very nice Erin at Dr. Kopell's office when I needed to change my follow up appointment. It was great to hear her voice again. She was happy to know how well I am doing now, and it just reinforced again how, for so many reasons, I went to the right place for my care. Seems like a small thing, really, but sometimes all you have is that voice on the phone. Now that I am working again, I get to be that voice on the phone for people, and I hope I am providing people with that solid, reassuring feeling that I got from Erin.

I've been enjoying the gardens at home every day after work and am so pleased with how things are growing. Last summer during my haze, I dug up and planted an area near our main door that I called my "greeting garden." The first year you never really know for sure how it's going to turn out since you are sticking things in here and there and cannot be certain how they'll do. But this spring everything is up, identifiable and thriving. Fitting--seems like a good parallel to how things are going for me, too.

impatiently waiting

Every day I go out a couple times for a walk around the yard, inspecting the perennial beds for signs of growth. A lot has been happening, but it has not been consistently warm here yet, so it seems painstaking to me at times.   I know I am not alone when I saw I just want spring to come and stay!

Developments

About 15 years ago I bought a sleeper sofa from a furniture store that was going out of business in Beaver Dam.   That couch has now seen better days, but is still sturdy and exactly the couch I want.    This week I decided to finally follow through on my plan to get it reupholstered.  The queen sized sleeper is going to be removed and there will be some kind of insert put in its place, which will make it easier to move.  In this picture I am holding the fabric samples for the couch itself and the pillows.  That fabric in front makes me unbelievably happy--big round flowers and pretty tans, oranges and cream colors.   So I paid 1/2 down and am on the work list, waiting our turn and expecting to have it done sometime mid-summer.    This process was so much fun and stress free compared to the job of couch shopping and paying out pots of money for something that's probably not made as well as the couch that already fits us!

Liz went to prom last night although you would not know that by the pictures on our camera.   She had it with her, with the promise of taking at least 10 photos of her and her friends as they got ready, etc.  (I was told not to go to prom since next year it will be her Junior Prom and a bigger deal).  When she came home there were 4-5 pictures of couples dancing and I really only saw one girl's dress full length.  And not one single picture of Liz!!  Grrrrr. 

Yesterday Sarah and I scrapbooked all day and I finished the 2007 family album called "Random Acts of Meind-ness."   Last year with the TN going on I did not scrapbook very much so I got behind and less organized on things like that, so I have a great feeling of satisfaction to have completed this book.  Sarah gave me some great 6x6 paper and her companionship all day,  so it was a gift all the way around.

We adopted two cute bunnies this weekend.  Someone from Jeff's mom's work needed to find homes for them because of an upcoming out of state move.  They are little lop eared bunnies with very calm and sweet dispositions, and they are adjusting well to their new rabbity life under the pines in our backyard.

The best news is that I am going back to work this week.  There are some details to work out first, but I am heading back to hospice to do the same job I was doing before all of this disability happened...I feel like I have almost come full circle.

 

Lima Beans and Other Random Thoughts

This picture was taken around the same time that this quote was recently heard in our kitchen: "I shouldn't have to be subjected to lima beans in my own home!" That's Elizabeth, picking out each and every one before she cooks her frozen vegetables. Truth is, none of us really like lima beans, but no one else has the inclination to go to such great lengths to avoid them. She always has been a determined girl.

I am almost done with the medication reduction, or detox, as I like to think of it. My clarity has returned. My pain has not. I cannot even say how happy that makes me.

Now I am "released" to return to work without restrictions as of May 1. In the formal way things must be done, I am planning to apply for an available position at hospice but am waiting for it to be officially posted. Because I'm still "with the company" as a casual employee, I have some advantage over a brand new applicant off the street. They know me, they know my skills and what I have to offer. I like to think they also like me and want me back, but in talking to HR kinds of people, things sound so much more official and non-relational. Patience is generally a strong suit of mine, and certainly this past year or so has taught me even more of it, but I am feeling ready to re-enter my work world and I hope this process moves along.

With my renewed mental faculties, I can read again for long periods of time. That has been a joy to me. I have been reading Three Cups of Tea, which I find really interesting. It's non-fiction, about a mountain climber who failed an attempt at K2 and instead found a community in Pakistan that needed a school for its children. I love the descriptions of the cultural differences and feel like I'm doing some vicarious travelling. Yesterday I read Water for Elephants, which is a book group choice, and I was so amazed that I liked it. Loved it, really. I knew it was about a circus, and I expected to hate it for that reason. I don't really like circuses. I did enjoy going to Circus World in Baraboo and seeing their show and all of the historical buildings and museum things, but when the circus comes to town, I avoid it. Why? Because I feel bad for the animals. So even though this book certainly contained some situations that made me feel the same way, the characters were so well defined and so interesting to me. I could not put it down. And lucky for me, tonight is book group and I will discuss it with my book women.

I just found out that the principal at the girls' school has been diagnosed with ovarian cancer. Prayers are being asked for, and I extend that request here too. The school did not release a lot of information but the kids have all been informed, and now it's just time to ask for healing and I am especially concerned that she have comfort with the fear she might be feeling.

Finding Normal Again

This is the time of year that Chance blends into the scenery, and I love that. It adds more interest to a walk with him because when he goes off into a ditch or a field, I have to look harder to find him even if he's only a few yards away. It's appropriate, too that a year ago at this time I was in pretty bad shape and I had to look hard to find hope in that situation of pain and fear of the unknown with trigeminal neuralgia. Now, I am moving forward in a really positive direction--coming off of medications, feeling the return of normal energy, having my mind work better, and looking forward to just living every day.

I am actually reluctant to talk about the progress of the med reduction because so far I have had no TN pain whatsoever. I still feel like there's some chance it could be there, underneath the medication I still have on board, and I don't want to get too confident! Still, there's no reason to expect pain---Dr.Kopell did everything to correct the problem. Every single day think about how amazing that is.

Taking the Time

When the kids were younger and more prone to complaining about going to church, I reminded them that God is only asking for one hour. Putting it into that kind of perspective made it seem more reasonable to them and certainly provided less fodder for fussing about it. Holy Week is also spring break this year, and yes, we are in church a lot. And they are NOT complaining! I think they are appreciating their faith and the opportunities to worship, which are special just because they are normal for us.

As I have started feeling better and looking forward to having a regular life again, I have noticed how much less time I am spending on my own to just be quiet, centered, prayerful. I have been feeling bad about it. When I needed so much every day to deal with the pain strikes and the difficult changes in life and the worry and anxiety and then the surgery issues, my connection to God was front and center. I reached out continually and recognized the many gifts I was being given, even in the heat of the moment (there's nothing like relief of pain even for a small period of time to incite a heartfelt and meaningful thank you). I know the connection is not gone. I am just feeling like I have to maintain a finer awareness now, to be purposeful about it since it looks like life is taking a turn back toward normalcy, and unfortunately that's got a flip side which consumes time unless I have a definite faith practice built in.

Does that make sense to anyone besides me?

Felt GoodToday

Today marks 4 weeks since surgery, and I feel good. In fact, I think it's the best I have felt since then. Still dealing with numbness but no TN pain at all. Last week my neurologist reduced my meds significantly and there are no bad effects from that at all. I like this.

Good News

I am feeling so happy today. I saw my neurologist this morning and the dilantin and the neurontin are going away immediately. I only have to take the carbatrol now and if there are no schocks during the next two weeks, it will be tapered down to (hopefully) nothing. He did say that sometimes the trigeminal nerve is still sensitive just from the surgery, causing shocking to still happen, which would mean that a person could have to stay on the carbatrol longer. But he was pretty optimistic and that's how I am feeling too.

He did some basic neuro checks in the office, and it is evident that I have lost some hearing on the left (I suspected as much since I can't hear the TV as well as I could before) and the sensation in various parts of the left side of my face and head are reduced. This is all related to having those nerves manipulated during the surgery and hopefully it will all get better as they heal over time. If not, I guess I'd say right now that it's a small price to pay for being rid of electric shock facial pain.

Today my simple goal is to remain awake all day. No naps (or sheer crashing into sleep...), so I need to get up and move around because I can feel the fatigue coming on now...

The Sun is Out Again

After several gloomy, dark days here, we are again seeing the sun, and that is so nice. It's not exactly warm yet, but still my mom and I are bundling up a bit for a walk with the dog every day. I have picked out a birch tree to photograph each time, which is my designated "spring tree." Over the course of how ever many days we'll watch it bud and leaf out and that will officially seal the deal that spring has arrived. So far, not much has happened.

It is hard for me to know how I should be feeling after brain surgery. I am getting some energy back, but it's not an all day thing. Mornings are especially tough. I have a hard time waking early and staying awake. Today I was up by 8:30, but napping at 11am after doing the normal morning things. Falling asleep at night has been a challenge because my head hurts and it's hard to get comfortable. The incision does not hurt to touch, but the area around it is really tender and the top part of my shaved scalp area is so sensitive, especially at night. There are times any time of day that I get these burning feelings in that part of my head--and I wonder if that is just the nerve endings coming back to life (that part of my scalp has been pretty numb since surgery).

Other after-effects of surgery have been numbness (hard palate and upper gum, left side) and hearing disturbance on the left. I may have lost a smidge of hearing, but the main issue is a sense of being congested or like I have fluid in my ear. It's like an echo chamber when I talk sometimes. At my appointment to have my stitches out, I learned that nerves take 3-6 months to heal, so I have to be patient and hope these things improve. But still--I am having no shocks and that is still such a relief.

The plan for next week is to see my neurologist for the start of the weaning process from the anti-seizure medications. I'm envisioning the day I can throw away my pill box!

March Madness

It's been all about basketball here--namely the high school boys basketball tournament this weekend and the girls tourney last weekend. I never knew how much my mom likes watching basketball. Maybe that's where I get it from? I love the game, watching the amazing plays and great three point shots, of course, but I also really love the drama. I am intrigued by the coaches and their demeanor and behavior, and I really love watching the players and how they react when they foul someone or when they get fouled. It's amazing to see how some of them get really beat up during the game (like Liz did) but keep on playing. Yesterday there was a kid with a disjointed finger, chipped tooth, and two bleeding scratches still playing until the end. It's not that I like brutality; if so I'd watch boxing. I am just impressed with how much a player goes through to succeed in getting the ball into the basket. In the very late part of the 4th quarter, the bench players substitute into the game, particularly the seniors (so they have a chance to play on the college court before their high school career is over) Also it's the end of the game that I am so interested in---when the inevitable happens---somebody wins and somebody loses. Those tears on the sideline are true emotion.

As far as healing goes, my incision is looking pretty good, and the stitches come out tomorrow in Milwaukee. The bottom inch or so of the incision is thicker and irritating to me, os we'll check on that tomorrow. No signs of infection, no worries at all. I have taken three outings this week--one to get my hair cut, one to a little shop near home, and last night to see "Grease" at a school nearby. Last night's outing was probably a bit much as far as energy and comfort go, but the performance was great and the whole family and Beth enjoyed it a lot. This morning I went to Mass and it went okay, except I never realized how much effort it takes to stand and sit and kneel in an hour...

Sometimes I feel like I'm being kind of a wuss, but then someone reminds me that it was two weeks ago that I had brain surgery and then it seems to make sense again.

Sunday Reflections

The pleasure of a shower should never be underestimated. Today the energy and coordination for a shower (not one that included getting my head wet, though) was present, so I took advantage of it. Now I'm exhausted. Clean, but exhausted nonetheless.

This post will be kind of like one of my favorite kids' books, There's a Monster at the End of This Book, where Grover warns us right from the start about the harrowing end of the book. He tries all different creative ways to prevent the readers from getting to the conclusion, but the comparison really ends there. I'm only going to issue a warning---there is an incision at the end the end of this post!!

This warning is here to keep some of you from looking at something that could gross you out and to titillate my medical friends.

Here on Patton Drive we have had some nice visits, some cards in the mail, a flower delivery, and great food. I am getting everything I need, and my mom and family are being well cared for too. This is my third full day at home. It is so much more comfortable than at the hospital.

Okay--here's the lowdown on the surgery.

The day before, we left toward Milwaukee in a snowstorm ("winter storm warning") and that made for a long, long trip. We saw so many cars in the ditch, lots of rescue vehicles and tow trucks. It was fine for us, just really plodding. When we got to Kim's house that night, we just settle in, talked a while, chatted with the pooches and Milo the cat, and then watched a disgusting but funny movie which took my mind off everything. Slept well for about 5 hours and got up at 4 am to get ready...

Remember there is an incision at the end of this post!!

At the start of the day it was all about prep---paperwork, health info review, orientation to how it's all going to work, etc. Then I went off the the "holding area" and met a very nice nurse who talked with me a lot until the anesthesiologist and a resident came to get my IV going. This nurse would also be my recovery nurse and she stayed with me until I went to ICU. I was feeling really calm during this period. My friend Scott had suggested a simple breathing prayer to say/do if I was dealing with anxiety at all (breath slowly in with "Lord Have Mercy" and slowly out with "Christ Have Mercy" and repeat). Each time I did it I was really calmed--before and after the surgery.

I remember nothing else at all about being taken to surgery. Cannot remember being in the OR at all.

Surgery started at 7:30 am and at 10:15 Dr. Kopell came to talk to Jeff and Mom & Buster. He found a vein pressing on the trigeminal nerve and an artery very nearby, which explains my TN pain! He put in the Teflon cushion pieces and all went well. I woke up around 2pm and saw my family and the doctor but I don't recall much about that now. I woke up again around 6pm and was taken to ICU at that point. THAT was a rough night. I was really sick and had several sessions with the emesis basin, which hurt so much and was upsetting to me because Dr. Kopell gave the nurse really strict instructions while he was standing next to me -- "I don't want her retching. No retching!" They did give me good medication for it but usually after it had already happened...I am so glad that part is over. The next morning I was in a regular room on the neuro unit by 10am. It was quieter there. The catheter was gone, so it became my responsibility to get up from bed and walk...hard to do and painful but it did get better each time. During the time in the regular room, I could not stand to look at food. I drank milk and water and ate some ice cream a couple of times. Anyone who knows me will understand how truly unusual it is for me to turn away food---even hospital food. My pain medicine may have been adding to that problem, and it was also giving me some funny side effects and not really managing my pain that well anyway, so after it was changed, things were better in all areas. I woke up, found an appetite, kept things down, walked in the hallway, cleaned up and out on some clothes I'd brought from home, and slowly felt more human. I was discharged on Thursday, March 12, late in the day, and we had our 4 hour ride home, with me fully loaded on meds and hugging my pillow tight to my head so I didn't feel the bumps.

Remember there is an incision at the end of this post!!

Now I'm dealing with some pain issues, some med side effect issues, an outbreak of cold sores, but nothing overwhelming. And I still take ALL of my previous medications for a while, and expect to be weaned in April.

The best part is, aside from a couple of incidents of some very light shocks, my TN pain is gone!

And that was the point of all of this anyway.

Okay---be warned! Here's a nice shot of the incision:

home

wow---I am home.

It has been a hard week.

So many people have been by my side either literally or by praying and calling and caring for me/us. It's overwhelming.

I have good pain management and my mom is here taking care of my every need. While we were got Jeff's mom was here taking care of the girls and the house and the animals, and I hope she gets some rest now!

I'll write some more details sometime, but for now just know it was a successful surgery and I have to work on recovering now...

Prayers

This is not the best photo, but I think you can see this really cool pair of socks to the left. They are prayer socks, knitted for me by my friend, KJ. She is a KNITTER, as are a few other people I know, and I really admire that. I tried to learn how to knit. It was not a success. I got very tense and my stitches did too. But I love to watch other people knit, and I actually find it very relaxing.

But the real point of this is to talk about prayer and how I know and can feel that many people have been praying and will continue to pray for me through this. My own prayers are usually of the informal type, just talking to God. Sometimes I just pour it all out and other times it is a bit more focused on things I am grateful for, people I am concerned about, and things I am trying to find strength to deal with. I do have a Rosary recording on my ipod and have found that to be very calming, too, and I love the community of praying together at Mass, but I was not raised to be a precise formal pray-er and that has been good for me.

It astounds me to reflect on the support system I have! In fact, my whole little nuclear family here on Patton Drive are so well cared for. Friends are sending their prayers and their concern for us out in so many ways, all intending the best for us in a successful surgery and recovery. Personally, I can just feel this. There's not much anxiety here lately. We've been having some fun with it (figuring out which things I can use the excuse "but I have a hole in my head" for and which situations where that isn't going to work ).

As surgery gets closer, I am (finally) seeing this now as part of the process of dealing with this diagnosis. Life has been going on the whole time, and with the exception of some serious napping I've been in it. Now it's time to take the next step which should lead to a life without pain and without medication. If there are complications along the way, I'll deal with them as I need to. I am really seeing how I can't worry about future things I cannot control. It would be impossible to write those words and truly mean them without the support and love that has been shown to me in the past many months.

Thank you all.

A New Chapter

This morning was different. The car went out of the driveway toward school like it has for 11 years, but Jeff and I were still in the house, standing at the window and watching this milestone happen.

Liz got her license yesterday. Laura was at least equally happy about that if not more so. There must be some prestige to having a big sister who drives. So off they went to school together. I can only imagine the mood in the car. Here, it's a bittersweet feeling, which I think most moms and dads can understand.

16th Birthdays

Today we travel to Beaver Dam to gather with the Janesvillians and also my UG family to celebrate the two new 16 year-olds in our family. Elizabeth was born first on 2/26 and then almost 2 weeks later came Tyler. They have both grown up to be respectable, good people with great senses of humor, and being together with both of them is always fun. My sister tells me she has a video she took of them playing (along with friend Erik who also turns 16 this spring), and she is going to play that for today's matinee.

I can't wait. To hear their little voices and see their small selves will really bring forth the full realization of how much time has passed.

The next chapter is driving tests. Liz has hers on Monday. She's ready. This is a bit of an inside joke so forgive me if it's not making sense---she was born ready.

Bathing my Brain

Yesterday was a weird day. I had a nice morning...some french toast with Laura before school, an episode of The West Wing while I cleaned up the kitchen, a warm bath, a good long phone call with Sarah. And I found my mother, who really was gallivanting and heading to a casino on her way home from up north...

Then all hell broke loose when my pain ramped up to an unbelievable level. It was the worst it's been since April, 2008. One thing that is true of people with TN, from what I've read, is that we all know exactly the date and moment that pain first struck. For instance my very first shock happened on the Sunday, Sept 2 (Labor Day weekend) in 2007...but I digress.

Back to yesterday--because I could not put my lips together without severe pain, I was unable to speak. I could not drink because the touch of the liquid inside my mouth was setting off those triggers. The shocks were repetitive and paralyzing, and I was really and truly beside myself. I made myself get really calm and sat in the recliner and tried to doze, and when Jeff came home from work in the early afternoon, and I wrote down everything that was going on and he called my neurologist's office to inform them and ask what to do. The other option was going to the ER, and I was really considering how nice some sedation would be. But, Dr. R called back himself, and he and Jeff had a thorough conversation about what to do.

Now I am taking 200mg of dilantin 3x per day (up from 400) and adding an extra 600 of the carbatrol per day (he actually recommended an additional 1200 per day, so there is still room to go up if needed). This is a huge jump, but within a couple of hours I was so much more comfortable and was then able to have a nice evening. It continues to amaze me that two pills made so much difference so fast. Now I have to keep taking them so the blood levels stay high enough to knock down the pain.

Of course, I am kind of stoned. I move slowly and am a bit off kilter. I took a walk with Chance this afternoon since it was almost 50 degrees and it seems like a waste if I don't go out in that. I tried to walk a straight line but was not really too successful. Surprisingly I've been awake all day, just puttering, even though I feel like I could drop off at any moment. My thought processes are slowed down quite a bit. It's taking a really long time to write this... Still getting some shocks but they range anywhere from 2-5 as opposed to the 10+ kinds I was having yesterday. I can live with that.

So the moral of the story for today is more medicine = less pain.

PAIN is a pain

If I write about pain every time I post something, nobody would want to read this. I sometimes try to give a basic overview of how things are and get on to another subject if I can. That's sort of how life with trigeminal neuralgia is anyway--pain can either control your life or not. In the past several weeks my pain has been growing more frequent and more severe but not getting so in the way that I couldn't still do some of the things I wanted. Like work--I have actually had several really nice part-days at work seeing hospice patients. I've even been thinking, well, it's GOOD to have this pain because it's a reminder of why I'm having surgery. And when I wake up from surgery and don't have this pain, I will know the surgery worked.

Well, now I am thinking I'd prefer to have no pain at all and even if it is only 2 weeks to wait until surgery, this is a really sucky way to live. I'm on my 4th day of really bad pain. It hurts in my teeth again, I'm getting jolts and zaps and what I'd have to call "attacks" throughout the day--with the usual hygiene things but also with moving my mouth a certain way, moving my head, changing position from lying to sitting or reverse, and talking. Getting kisses is a tentative, right-sided operation and giving them almost out of the question right now.

I have had another med increase. More neurontin, which helps the burning pain but not so much the electrical zaps. It's also sedating. I have about an hour or two in between med doses when I feel better, but otherwise it's not good. I am going to need more help than this.
I am staying as quiet as I can since it hurts to talk. I am trying to stay positive and calm, knowing that I can weather this. But I have things I want to do before surgery to prepare
myself and my family and it's really hard to think about things besides how bad the zaps are going to be and when the next one is coming.

My prayers are for strength and patience and the ability to see further ahead to a place of good health where this will all be in the past. If you are a praying person, I'd love some help with this. Thanks.

are YOU my mother?

One of my favorite books as a child (and as a grown up) was Are You My Mother? Remember that one--where the mother bird is sitting on her egg and it starts to move and she realizes that she better go find some food, and while she is gone her baby hatches and wonders where his mother is? So, not one to just sit around waiting, he gets down out of that tree and goes to find her. He asks various animals and machinery if they are his mother and they all answer something like, "No, I am not your mother. I am a cow. How could I be your mother?" Undeterred, he moves on and keeps looking, but it becomes more frustrating until at one point he yells something like, "I did have a mother! I did! I did!" Then the SNORT picks him up and puts him back in his nest...and they live happily ever after.

Well, I am thinking about that book today because it is my birthday and I am looking for my mother. I like to call her on my birthday around 8am to wish her happy birth day and thank her for bringing me into the world.

When I called this morning, I got her answering machine, and that's just not the same as hearing her laugh and relive a memory or two. It was snowing...my dad called his parents and said "I'm a dad again!" She would have named me Lisa Marie, but for some reason he prevailed with Lynn Marie, which I have really been grateful for because of Elvis and everything.

I think my mom is out gallivanting. She was up north on a short trip because her cousin died and they had the funeral yesterday. That was probably like a sort of family reunion like many funerals are.

I'm sure she'll call me later.

The DATE

Isn't this what we've been waiting for? I got the call this morning, with no fanfare at all. Just the very, very nice Erin letting me know in her friendly way that they have settled on Monday, March 9 for my surgery.

And I have to check in at 5am.

If I tried to write any more of my feelings about finally reaching this point, I think it would be hard to find words to convey the complete mix of relief and trepidation. I'll save that for another time.

something new is going on

This blog is called "beyond the pillbox" for a couple of reasons. Mainly I wanted to convey that life is moving forward despite (or because of) this beloved pillbox of mine. But also that sometimes it's really hard for me to look far beyond this container of medicine--especially because late doses mean pain and then further problems evening things out again. It's also been hard to look beyond the $$ I spend on these medications and also hard to face the side effects every day as well as the typical cycle of feeling the pain coverage wear off. That's where I am now. For the past several weeks I've had pain every day---usually manageable (definition: it does not make me cry and other people can usually not notice I'm having a problem).

Now I'm developing something new, which is actually kind of interesting to me. It's a new electrical snap kind of pain. It often happens out of nowhere without any apparent trigger, and this is really different from all the other kinds of pain I've had (zaps, jolts, sizzles, jabs, etc.) The only thing that does seem to trigger it is lying down, which is bothersome to me because until now I have had no problems with sleep. The last few nights I've been awakened by this, just for a couple of seconds, and then I'm back to sleep until the next time.

So because surgery is not that far away (though there's no confirmed date on the calendar yet), I have been resisting the urge/need to increase some of the medication to keep things better controlled. It seems like a better justification of the need for surgery if I am actually experiencing pain, or at least that is what I have been telling myself. That way I'll be better able to tell if the surgery was successful instead of waiting the month or more afterward when I get to go off my medications. BUT, I am just hoping and praying this does not get worse before it gets better!

Games, etc.

We've instituted Game Night at our house on Sundays anytime after 3pm. That's when Clara, my godchild, wakes up from her nap at her house about 5 miles away. Really, anyone is welcome, but we have talked with her parents about needing to get together to play games, and now we will just have a standing date (like piano lessons, basketball practice, or regular massage appointments). So if you are nearby on a Sunday, please join in.

(Being 2, Clara doesn't play games like this yet, but she provides entertainment in her own ways).

This time we played Bananagrams, which is a game of speed and patience. You might get the letters you need, or you might not. You can choose to dump a letter that's not working for you, but in exchange you must take 3 letters back. You are working against yourself in terms of getting your letters into interconnecting words, but you're also working against the rest of the players because when one person uses us all their letters and picks a new one, everyone else has to pick a letter too. That might mean you have to change things to make it fit, or just be patient and see what the next new letter brings. It's addictive and can also cause a bit of silliness, as you might be able to tell from the picture above (that hand was NOT a winner).

We also played a game of VisualEyes, which is an awesome game. There are about 20 blocks with pictures of very simple things (a sun, tree, person, cap, dog, fish, etc.) and each player has to make words by joining two blocks together (ie: sunfish). They are not always that straightforward and that's where the fun comes in because you see how differently people's thought processes are. If other players get the same word you do, it doesn't count for anyone. Scoring is easy--just one point per valid word, and judging is informal. Inside jokes even count as long as the other person is there to vouch for it and tell the story behind the joke.

Another really fun game we played at Christmastime with my sister's family was Bafflegab. It involves five cards laid on the table, each with a different word. Then the beginning of a sentence is read aloud and every player has to finish the sentence, including all 5 words on the table in a way that makes some kind of sense. We were marveling at how creative and funny the answers were. There's some kind of scoring system, but this game is just fun on its own.

Even by just writing about this I feel happy and better about my life. It's been a long winter, and a long stretch since life's felt good. This is a nice reminder that we don't have to be so serious.

Liz is becoming a very fine horn

It's report card time again and both girls are doing great and bringing home good grades. They have computerized report cards through a new system now, so when a teacher wants to include a comment, it should show up after the grading details. However, there seems to be a glitch. It will only show the first so many characters, then abruptly ends. So that is how we came upon the news from Elizabeth's band teacher that she is becoming a very fine horn. We suspect he really means horn player, but this has caused me a great deal of delight.

Oh, Froedtert called. It was the very, very nice Erin telling me that they are pretty close to finalizing my surgery on March 9 or 10 (a Monday or Tuesday). She was wondering if that would be all right with me. I assured her that it is, and she'll call back with the final plans. That's really just a month away. Starting to think of the logistics already, but will try to take one thing at a time...

Random Thoughts

Well, things settled down again for a couple of days, which was nice. Then today I had some zapping in the morning and approaching lunchtime, which I accepted since it was getting near the time to take my meds. Then as the afternoon wore on, it was intensifying a bit and at almost 4pm in the midst of a busy day of working and then picking up kids and such I realized I had forgotten to take my medicine at 1pm. So I guess that serves me right.

Work was great today. I visited with 2 patients and one caregiver/spouse. They were good visits, filled with the things they needed to talk about, all which related to loss of identity and role changes in families and trying to accept their body's changes. I could understand these things so much better now than a year or two ago. One person spoke a lot about adopting a way of seeing things and being very positive and surrounding herself with people. She was remembering a friend she had who'd been quite debilitated over time with MS, who was interested in life, maintained friendships, and genuinely had a happy disposition through it all. This lady I met today really holds her friend up as an example of how she is trying to be. That really hit something in me. I know that a positive attitude is a huge factor in getting through tough circumstances, and I think I try to get there too by staying invested and active in my family's life and holding on to friendships, but I don't think I'm doing well enough at it. Plus the skeptic in me says, well maybe that woman just didn't let others see her pain...

I have seen so many people who behind the scenes let out a lot of pain and distress to me because I am a safe person to do that with. They say things they don't say to their family, for fear of making them sad or burdening them. I appreciate being able to receive that from them when they need to unload or sort something out. During this whole TN situation I have been able to unload my worries and my fears on a whole list of people (including God, who definitely does not deserve to be in parentheses), and they all help me come back to the only thing I know for sure--all any of us has is TODAY. That realization and a few nice deep breaths will always get me back on track.

Self-Doubt,I Guess

Since I last posted, there have been many good days and some that I would have to call difficult just because of an increase in shocking. It's not as bad as it has been in the past, triggered only by a few things instead of the whole list of things. I guess the thing that makes it difficult for me is that I try to figure out why it is happening again after weeks of comfort and good pain control from my meds. Is it that time of the month? Is it an impending sinus infection or cold? Have I had too much caffiene? Am I more stressed for some reason? Not getting enough sleep? Are my medications losing effectiveness---if so, where do I go next? Does this increase in pain mean it will only keep getting worse or settle down again without upping my med dose somehow? The only one of these things that has ever been sort of proven in my case has to do with the medications wearing off. That situation is well-documented in my case and in the things I have read about trigeminal neuralgia, so I assume it's that. But I still wonder and suspect these other kinds of things as possible explanations. Sometimes I picture the inside of my head and imagine some big old artery pulsing away in there, provoking my innocent cranial nerve #5 which is just minding its own business...and I get back to a place of questioning my decisions and wondering if I am doing the right things. Maybe I should have tried harder to change my diet or take more vitamins, or stick with acupuncture longer (oh, what a great unexpected choice of words!), or meditate, or try the upper cervical chiropractic treatments, pray more, or just live with it until I really can't stand it anymore. I know of people and have "met" people online who suffer more than I do and have for many years. What is that all about?

Having said all that, let me say that the many good days have included some great bleacher sitting and visiting with Columbus parents who have become good and caring friends, a couple of good part-time days at work being a real hospice social worker again, hanging out at home with the kids and Jeff, reading with my goddaughter Clara, and finding the best purse ever at Kohl's. I'll post a photo and that story sometime soon--if I can remember that.

Oh, and still waiting for the date from Froedtert...

Hungry Visitor

My friend Sarah, who grew up in Portland, Oregon but has lived in central WI for the past 16 or so years, still gets a bit intimidated by the wildlife that lives near our place. She is especially freaked out by birds, especially Sandhill cranes, which make some interesting, loud vocalizations pretty much all spring and summer long. I remind her that they really are just communicating to one another and it has nothing to do with her, but the sound and its close proximity just sends shivers up her spine. So, today I thought about Sarah when I was notified subtly by Chance that something was wrong outside and looked out to see this visitor to the only bird feeder that I am keeping stocked this winter. He (I'm sure I saw little nubbins on his head where his rack used to connect) just calmly hung around, nibbling up as many black oil sunflower seeds as possible. He got rattled by a few close flying chickadees who probably did not appreciate him horning in on their food source (if you are groaning, that was a good pun!), but he stayed about 25 minutes. I know there are far too many of his kind around, and I have not appreciated their presence in two particular vehicular introductions in the past year or so, but today I am feeling kind of attached to him. Maybe by feeding the birds we are making his winter just a bit better, too.

Plus I love the thought of sharing these photos with the family hunters who saw not a single deer this year on their annual trek to the woods. Maybe they should leave a trail of bird seed next November...

nothing new really

Life goes on...Liz has finals and is zeroing in on her last 2 behind the wheel sessions with her driving instructor. Laura is planning out her outfits and awaiting the big ski trip for Catholic Schools Week. Jeff works, even in the bitterest cold, and continues to donate time to the fire department for just about anything. I have been spending a lot of time on the really user-unfriendly site of Jeff's insurance provider, trying to determine simply whether Dr. Kopell is an in-network provider for them. Can't find him anywhere in the provider look-up system, but I see many of his colleagues. Can't get ahold of a real live person on the phone to just simply ask either. Tomorrow I will try again. I'm just trying to figure out if I should stay on my COBRA plan or switch to Jeff's coverage...simple really.

I have always felt for people who don't understand all of that insurance paperwork and detail. In hospice I saw and spoke with so many who had no idea what it all meant or even where to start, and the mail just piles up...and they are so sick or so worried and worn out from taking care of the person who is ill. That was one of the ways I knew I was helping them. Social workers are not shy about diving right into those problems and helping them sort through their questions and get some answers. However, there have been many times through this whole thing that I have felt frustrated by all the written information coming into my mailbox in addition to the inability to get information! I should say, though, my insurer, Security Health Plan has really been easy to deal with and very very helpful. I have a case manager named Lori who calls regularly to see how things are and to provide encouragement or information, or to make some connections, or to make things go smoother.

Work has called. I can work again, very part-time, between now and surgery time to help out. A social worker has resigned and they are pretty short-handed. I am interested in trying again, with really specific social work duties for a limited day. The return to work form is on my neurologist's desk, so when that's done, I'll go to the office again. Of course, it makes me nervous since when I returned to work before (Aug/Sept) my pain blew out like crazy, but I want to work some if I can.

My surgery date should be set soon. They did call last week with an earlier date than had even been hinted at in the consult visit, which caught me off guard, but also because it was on my birthday 2/24, I just couldn't accept. I'll admit I did have a quick flash of the irony of possibly dying on my birthday and got spooked by that, but then I quickly snapped out of that kind of thinking and acknowledged that I don't want my surgery/hospitalization to interfere with Liz's 16th birthday 2 days later. So the schedulers were patient with me and agreed to go back to the drawing board to get it coordinated for a day in March.

The GOLD Standard

The reasons I am going to have the MVD (microvascular decompression) surgery are as follows:

1. This procedure does not damage the trigeminal nerve as the two other radiation based treatments do. It's a question of having facial numbness instead of pain. The MVD leaves the nerve intact.

2. The MVD has been used the longest to treat TN and is considered "the gold standard." It has an approximately 90% success rate initially and 5 years out the success rate is still as high as 70%. Success is defined as no pain/no medications.

3. Because the radiation based surgeries cause damage to the nerve, doing an MVD after one of those is not as successful (for instance, if the gamma knife worked for 1-2 years before symptoms came back). Also, a patient is allowed only to receive two gamma knife surgeries--too much radiation otherwise...

4. I'm young for this disorder. At 42, I hopefully have many years to live and since this is a chronic condition, I want to do the thing that has the most chance of success for the longest period of time.

5. The medication route is not working for me. I am now on three medications for this, at high doses according to my neurologist and the handfuls of pills I swallow 3x a day. The meds have made me less than myself. Aside from the sedating effects and the memory and cognitive interference, it's hard to describe how the meds subdue me --- in terms of my personality, motivation, self-esteem, humor, and all of that. There are some other med options to try eventually if needed in addition to what I'm taking, but let's not forget that I am not working, have a safe zone of about 15-20 miles from home that I can drive without nodding off, and also there are longer term side effects of anti-seizure meds that concern me.

This is not the most concise or well put-together posting, but thinking about this (as I have done for months now) turns me in circles. I am not thrilled about having this surgery because it sounds really difficult to go through. I'll write about it another time, and hopefully you will not read that post while you're having your breakfast. But -- Jeff and I really do think I need to do this surgery for the best chance at getting my regular life back.

a quick summary

The consult in Milwaukee with the neurosurgeon went well. I want to go into more detail about things, but cannot right now. The bottom line is I am planning to have microvascular decompression surgery (MVD) early this spring (date yet unknown) for what we feel is my best chance at getting rid of the TN pain and the need for all this medication.

Anyone who knows me can imagine that it's really not as simple as what I just wrote in a couple of sentences. There is a lot to consider and a lot of factual and statistical information I will share here soon, as well as a look into this weird combined feeling of relief and fear.

quiet

This is the best kind of day...one where there is no absolute to-do list but one that is productive by taking care of things in the house that have needed doing for a while---watering the high plants, getting the "junk drawer" project taken care of, laundry, unpacking, paying a few bills, talking to the dog...

It's a general puttering around.

A day like this allows me to just think a lot and today that is really good. I am within 24 hours of seeing the neurosurgeon at Froedtert, and I think mentally I am just getting ready for that. Thinking through the questions I need to ask, preparing to fill out the 6 pages of pre-appointment paperwork they sent, and getting my mind as still as possible so I can accept whatever I learn there tomorrow. Up until today I have been spending a fair amount of time exercising my "what if" thinking and wondering about all the possible scenarios that could play out. But today I really do feel at peace about the whole thing---I am not worried. Nervous, yes. Curious, yes. Hopeful, yes. But not worried. I know that this doctor will provide information and medical advice and we'll go from there. Getting ahead of myself just leads to anxiety and there's no room for that right now.