Napping in the MRI Machine

Those nice people at Froedtert! Not only do they provide a nice comfy MRI machine but they also give you a great cushion under your knees and provide a very mind-quieting hum for about 45 minutes so a person can nap while all the 'thin slicing' is going on. My book club friends who have read Blink with me will think of thin slicing as something different, but in terms of my brain and my nerves, this means a very, very close look at what's going on in there.

Results will come next week in my consult visit with Dr. Kopell. I am glad the time is finally come and in general I feel comfortable now. I got pain free at the end of November again, and then just as I was forgetting what it felt like, did get one electrical zinger on Christmas night. That was just a reminder, I guess.

I have been really at ease with all of this lately except for the game of "what if" that I play once in a while (more accurately--sometime each day). Mainly this game involves asking myself, "What if the MRI shows nothing wrong?" Then I play out all the possible scenarios of treatment choices and all the regrets of treatment choices that have already been made to get to this point. Invariably I get to the same spot I have been in for a long time, the place of uncertainty about anything other than this place in time right now. Then I am able to stop the worrying and questioning (otherwise known as my anxiety) and settle on the fact that I cannot know everything right now and that I will make the best decisions for me based on what the doctor tells me, which is incidentally why I am consulting with him in the first place.

So, it's about taking a deep breath or two, acknowledging how things are right now and letting the rest go...for now.

SNOW

It's snowing again here in Central Wisconsin. Nothing new with that. One thing I have always enjoyed about living in Wisconsin is the four seasons, but I like it best when they ease into one another. A gradual transition is best in most anything, I think. This winter seemed to come on harshly with cold, cold temperatures and a lot of snow. I can remember so many other years when we truly wondered if there would be snow for Christmas. Not so, this year.

For Chance, snow has its ups and downs. Little snow and ice balls wedging into the pads of his feet is a definite "down." But if you look at the picture above you can see one of the best things snow has to offer.

I wish I could approach new things like that---just run around like crazy and dive right in! I am more of a s l o w transition girl myself.

A poem I really like

The Lanyard
by Billy Collins

The other day as I was ricocheting slowly
off the pale blue walls of this room,
from typewriter to piano,
from bookshelf to an envelope lying on the floor,
I found myself in the L section of the dictionary
where my eyes fell upon the word lanyard.

No cookie nibbled by a French novelist
could send one more suddenly into the past—
a past where I sat at a workbench at a camp
by a deep Adirondack lake
learning how to braid long thin plastic strips
into a lanyard, a gift for my mother.

I had never seen anyone use a lanyard
or wear one, if that’s what you did with them,
but that did not keep me from crossing
strand over strand again and again
until I had made a boxy
red and white lanyard for my mother.

She gave me life and milk from her breasts,
and I gave her a lanyard.
She nursed me in many a sick room,
lifted teaspoons of medicine to my lips,
set cold face-cloths on my forehead,
and then led me out into the airy light
and taught me to walk and swim,
and I, in turn, presented her with a lanyard.
Here are thousands of meals, she said,
and here is clothing and a good education.
And here is your lanyard, I replied,
which I made with a little help from a counselor.

Here is a breathing body and a beating heart,
strong legs, bones and teeth,
and two clear eyes to read the world, she whispered,
and here, I said, is the lanyard I made at camp.
And here, I wish to say to her now,
is a smaller gift—not the archaic truth

that you can never repay your mother,
but the rueful admission that when she took
the two-tone lanyard from my hands,
I was as sure as a boy could be
that this useless, worthless thing I wove
out of boredom would be enough to make us even.

Christmas spirit has been a bit slow to come to me this year. Certainly, it looks like Christmas outside with all kinds of snow and cold temps. I've played some of my favorite music to get things going (Canadian Brass, classic pieces by Nat King Cole and Burl Ives and those guys...) and have spent an afternoon gift wrapping and even watched "Elf," which makes me laugh and be happy. The tree is up and decorated because Liz, friend Bomie Kim, and Laura took the lead on Saturday. It really looks pretty and has a lot of lights, which I really like. The cats are using the nice concealed underneath area as a lookout spot, but no one has been climbing it this year, which I appreciate.

So it's not that I'm not ready for Christmas or not looking forward to it. In fact, there are more a few things that I am happily anticipating:

1. Midnight Mass, which really is at midnight, with carols beforehand

2. Reading "A Christmas Memory" by Truman Capote with the girls (kleenex at hand)

3. Ginger's tin of caramel corn for "snacking"

4. Watching the kids open presents and pretending NOT to appreciate the new

undies from Santa

5. Board games/card games with the Meinders family

6. Spending fun time with my side of the family, especially those sweet little kids

7. Getting together with Sarah and family, who we have not seen enough of this school

year.

8. The new tradition of white elephant gifts at the Meinders weekend

I think none of us are looking forward to the full realization that Grandpa Frank will not be in "his" recliner this year or at the head of the table for dinner. He died in March, at home, after a long "old age" and a short illness. We all were able to get there to be with him and to help take care of him, and that was good and I think there aren't many regrets, but still, that's an empty spot and we have to acknowledge it.

I'm also getting a bit nervous about long awaited upcoming medical appointments in Milwaukee. Not sure why. Fortunately I have been pain free in the last couple weeks, and that has felt so good. I can't even conjure up a zing or a zap right now! I am not confident that it's gone, but I know the medicine is doing its job, and I am grateful for that. I'm kind of forgetting what those attacks feel like...it would be so great if I did not have to feel one again.

And this morning my aunt Bettie is being buried in Marinette with her Florida family and some of the Wisconsin family there to observe and say a last goodbye. I am here but will visit her grave this summer when things are in bloom...

Unrecognizable

You know how sometimes we seem to categorize certain people we know by where we see them most often? For instance someone you see at the grocery store every time you go seems hard to pinpoint when you might see that person in a restaurant with her family. You are certain you recognize her but just don't know where you know her from. This is a fairly common thing for me, and it always bugs me until I can get it figured out (like trying to remember many other details these days).

This morning I received a call from the hospital about Verna, an elderly lady for whom I am legal guardian. I knew she'd been taken by ambulance last night, and I spoke briefly with the admitting people and planned to call the morning to find out how she is doing. The phone rang here earlier than I planned to call, though, and the voice on the other end was entirely familiar to me. It was a hospital case manager who I worked with really often when I was doing admission coordination for hospice. We had a good working relationship, and although we worked together mostly by phone, we have met in person and I know she knows my full name. When she called this morning, it was all business. There was no recognition of her knowing who I was, even after I said "Hi Darlene" in the same casual, friendly way I always had when I talked to her about patients at work. So I just went with it. It's actually more painful to me to have to explain this than to just do what is needed for Verna. The real twist of the knife came when at the end of the call, she asked if I am home during the day (a way of finding out if she needed to get a work number to reach me), and I simply said "yes."

It's the little things like this that make me feel unsure of where I fit anymore. Hospital and hospice work moves at a quick pace, so I can understand--but when I was working, even if I thought I might know someone, I always found a way to ask and try to make that connection. It helped me and it helped the person I was talking to as well, I think. It would have helped this morning, too.

By the way, Verna is doing okay.

This wonderful woman died today, at home. It sounds like she just closed her eyes and gently went to God.

Bettie and my uncle Charlie took my brother (8) and me (4) in for several months when our parents were in a terrible motorcycle accident. It killed our dad instantly and left our mom with many injuries and a long hospitalization and recovery. As our family changed, so did theirs. Our cousin, Mark, suddenly had to share his parents' and our grandparents' time and attention. As an adult, I have often thought about what it took for all of them to do that.

When we lived in Bluffton, IN with them, my time was split between Charlie and Bettie's and my grandparents, Helen and Ron Adams (my dad's and Charlie's parents). Bettie was an elementary school teacher, working with kids with disabilities and learning problems. In addition she worked in the photography studio they owned. Seeing Bettie's classroom was so exciting for me, a little girl who had not yet been to school. There were toys, books, interesting things to look at on the boards and walls, and a chalkboard. At the studio, I got to see the cameras and the backdrops and I especially loved looking at all of the display pictures, framed and beautiful in the lobby area and the front window. Imagining what each family was like, I made up stories to go with the faces and the relationships I saw there.

Some of my distinct memories from that time: having cheese fondue with those big hunks of bread, getting tucked into bed "mummy style" by Charlie and then trying not to loosen those covers while I fell asleep, the way Bettie cut my french toast, spray painting their house (in my little 4 year old mind I guess I thought that big wall was a canvas) and only getting talked to about it but not really feeling in trouble.

Later when we were re-established with our mom in Union Grove, we always visited Bluffton in the summer. Sometimes Mom went but some summers it was Jeff and me, going by plane, piloted by Charlie. I recall one time in particular that we landed and I puked all over the place in a little airport bathroom. Bettie cleaned me up and cleaned the bathroom, never complaining or making a big deal out of it. We usually travelled by car, and Bettie was the best field trip planner. She took us to amusement parks in Ohio, to Springfield, IL to see Abraham Lincoln's home and to numerous places in Indiana. She often took us to the Amish community of Berne where there were so many people with horses and buggies and that was a thrill. We also went once to the home of Gene Stratton Porter who was an Indiana native and a writer and naturalist. I can still see the inside of that home in my memory. There were so many many trips like that...

Bettie and Charlie later divorced, and this was a very hard time for her. In the years since then, she had a different home in Bluffton and I visited several times after I was an adult. She would take me and her dog (I am sorry I cannot remember his name!) to state parks to take walks and to talk. Bettie was a major dog lover. Her dog was her friend and companion, going on car trips with her and pretty much being right by her side whenever possible.

Bettie was a lover of culture, seeing plays and musical performances as often as she could. She was a reader, and we sometimes shared books and conversations about them. She learned about dreams and what they meant. She was a very wise person, and dignified, with a healthy sense of humor, one that never depended on someone else's embarrassment. Her home was full of interesting things and artwork that meant something--painted by someone she knew or representing a place she'd been.

Bettie had plans to retire in Florida, near Mark and his wife Jennifer. She and her brother drove the moving truck with all her things from northern Indiana to Fort Lauderdale and arrived on the day that her first grandchild, Jacob, was born. The timing was probably not just a coincidence; she was so in love with him from the start. In addition to helping take care of Jacob and later her second grandson, Jason, and watching them grow, Bettie set up her life there, making a nice home for herself, studying the maps so she could see what that area had to offer, joining her church and getting involved.

My mom started an annual spring break trip every year, and the two of them did all kinds of touring and sightseeing, with each day beginning with coffee and conversation. One year, my girls and I were included in that trip, and we had a great time, again with Bettie as our tour guide. Every minute was as full as we wanted it to be and we were treated like special guests the whole time.

Just a few weeks ago, I went to Florida again, along with my mom and my aunt Judy. The reason this time was not to be tourists but to be with Bettie in whatever way she needed. Her cancer diagnosis came in July and the chemotherapy was hard on her. The decision to start hospice care was a difficult one for her. None of this made sense. You don't go to the doctor with a cough and come out with metastatic cancer.

Before our trip, Bettie had asked my mom to bring an apple. She wanted an apple from Wisconsin. She missed the seasons and this was a simple request. My mom went to a nearby orchard and picked two apples for Bettie, packed them safely in her carry on bag, and presented them to her on our first day with her. This is the surprising and completely heartwarming part---Bettie took them in her hands and put them to her nose, breathing in deeply, and then with a voice that cracked with tears, said, "Oh, I want to go home..."

Now you are home, Bettie. May you rest in peace.

Hitting the Wall

This is what I feel like doing every day sometime between 2-4 pm. It's a wave of fatigue that overwhelms me, and I have to fight to keep myself upright and occupied. Otherwise, if I'm sitting down, soon I am lying down. If I am trying to read, my eyes go blurry and my head drops down in between sentences. Next I'm forcing them to focus and I get another sentence in before the whole thing happens again. If I "nap" (weird term for a med induced sleep), it feels so good to just succumb to this heavy pressure to sleep. When someone is home with me, I set a limit of 30-60 minutes and ask to be woken up by then. This kind of heavy sleep can go on for some time, and I miss too much of the day (and of life) by letting it run its full course.

Most days I don't sleep in the afternoon. Instead, I am on my feet. Doing something in the kitchen, putzing with housework, going downstairs to do laundry, going outside with the dog.
Once I get through that period in the afternoon, I seem to be normal again---whatever normal is.

That's a topic for another discussion.

Ruthless Sequence

Well, it's that time again--when the Meinders side of the family gets together for food, conversation, and board games. The favorite is still Sequence, and I must say there was an abundance of energy going around the table tonight. I had an able, quality partner in Kaitlyn, but we just weren't getting the cards. Liz and Darlene on the other hand simply crushed us. You'd think on Thanksgiving there would be some compassion. But sadly, no.

Home again

It has been a whirlwind in the last couple of weeks. Liz had her play, which was really well done and fun to watch. Then we had Alpine Holiday and all the work and fun with that event. Then I planned a quick trip to Florida with my mom and my aunt Judy to visit another aunt, Bettie, who is in hospice now with cancer. We were fortunate to have 2 full days of visiting her at her home last week. Those hours were filled with conversation, remembering, laughing, and tears. I will write more about her and about our visit later on, I think.

From a physical perspective, my pain is declaring itself more often. The latest dilantin increase was successful for a few weeks, with good overall comfort and only a couple of zaps a day. But as seems to usually happen, the best coverage wears off eventually and symptoms get worse again. I'm not in severe pain--just noticing the increase in triggers and occurrences, so that makes me just want to take some deep breaths and hold on for what might be coming.

A Thought

Finish each day and be done with it.

You have done what you could.

Some blunders and absurdities no doubt crept in;

forget them as soon as you can.

Tomorrow is a new day;

begin it well and serenely

and with too high a spirit

to be encumbered with your old nonsense.

~Ralph Waldo Emerson

Enough said!

The Tale of T-Gemmy by MariAnne

My sister and her kids have been on a Red Letter Cam(less)paign (get it?) and I love getting the mail now. Sometimes it is a word of two from the older, more literate ones, sometimes an interpreted note from the youngest, and always hand-drawn pictures. I think what they understand is that Auntie Lynn doesn't feel well right now and has to take a lot of medicine to feel better. But recently I received a truly creative effort on the part of my sister, and it's much too wonderful to keep it to myself...

The Tale of T-Gemmy

There once was a wicked person

who liked to get people a cursin'.

She climbed on inside

and made for an electrifying ride.

Bolt after bolt she sent to the face

Until she has someone crying all over the place.

"Just make it stop!" that person would say,

But T. Gemmy would keep shocking on day after day.

Medicine, acupuncture, massage, and a diet of sludge

would not make that nasty old woman even budge.

Until came along the ultimate plan.

Just hit her over the head with a frying pan!

"Of course that will work!"

"Let's get rid of the jerk!"

So out came her nemesis, T-Fal

Coated in black and ready to brawl.

T. Gemmy saw this and shouted, "Let's get it on!"

Next time I saw her she was coated in teflon.

And this my dear friends was the end of T. Gemmy.

I'd tell you some more but the victor won't lemme.

"We won't waste one minute more,"

She said, "Time to celebrate!" as we ran out the door.

As for that awful old hack

I'm sure that she'll never be back.

And this end, it is oh, so happy.

I wish it for you, and hope it is snappy!

Holding Steady Now

Last week I asked my neurologist for an increase in one of my meds to deal with the increasing pain. First, he wanted to check my levels--meaning I had to have blood drawn. I complied on Friday morning, and that afternoon, his assistant called with the results. My levels for the tegretol and gabapentin are "fine," but the dilantin was "a little low." So that day I was allowed to increase the dilantin from 300mg daily to 400. Since then, my pain has been better controlled, and that is good. It's not gone, of course. I feel it throughout the day in all the normal ways, but it's not as often and it is not as sharp or explosive. So I guess we'd say that's manageable---for now. I add that not to be pessimistic, but rather to be realistic. I've been down this road long enough to know that "manageable" lasts only for a while. How long of a while I do not know, so that brings me back to the importance of just living today and trying not to worry about what I don't know yet.

BASIC MATH

Having never been accused of loving math nor excelling in it, I find it amusing that I am now using my math skills in some volunteer work at school. Actually, I am just using my counting skills, but still, that's math, right?

Dealing with random, intermittent shocking facial pain every day gets boring in some ways. Some days are tough to deal with because there are lots of episodes of pain. Other days are better, but they all have the side effect feature--mainly the weird fatigue/drowsiness. On the harder days I have to work to be quieter or to improvise things so I can be more comfortable.

But the amount of time in a day is the same, and when I am doing so little compared to my former life as a full time social worker, it seems like a reason to get out is giving my days more purpose. So when I saw the notice of a need for help in the Gift Card office at school (a fundraising/tuition assistance program), I offered myself even though I clarified that I am not really at full capacity, it seemed like the right thing to do when the woman in charge said to me, "Well, can you count?"

Yes, that is something I can do. So there I am a couple mornings a week, counting gift cards and writing down the number on an inventory sheet. It feels a little like supported employment, but I am grateful for it for now.

This unfortunately is reminiscent of how last night felt for me. 24 hours ago. By comparison, now I feel great! I don't really feel great since I am still getting snapped and zapped much more often than I would like (ZERO would be my preference). I did have an enjoyable evening seeing the Capitol Steps in Wausau, and that show as hilarious. Jeff and I laughed for about 90 minutes straight, and it's so fun no matter which way your politics lean. All of the laughter did not hurt much, so it was a good reminder that I need to be trying to have more humor in my life. I did just pick up one of my favorite David Sedaris books on CD from the library, so I know that will help. Any other ideas will be accepted!

I Have Appointments

The phone rang yesterday and what a nice surprise to hear the voice of the very, very nice Erin. If I had a picture of her I would post it here. But since I don't, I'll introduce you to Dr. Kopell, the neurosurgeon I am going to meet. He has a ton of credentials that you could see for yourself if you look him up on the Medical College of Wisconsin website or click here---http://doctor.mcw.edu/provider.php?2724 .



Oh yeah--the date I have been scheduled is January 7, 2009 (my sister's birthday, so it's easy to remember). One week before that I will go to Froedtert for that FIESTA MRI. Oh, and I am first on the cancellation list, so maybe this will all happen sooner.

SACK O' MEDICINE

In the past several months, I have come to really like my pharmacy and the people who work there. There's Phil and Becky and Lisa and some other women whose names I don't know. Liz might remember one very handsome young guy who was working there in the spring--probably an intern. He has not been around in quite a while now. Oh , well. The pharmacists and assistants take my calls, tell me what I need to know (gingival hyperplasia, anyone?), send faxes to my neurologist for refill prescriptions or for permission to fill 3 months at a time with only a 2 month copay (a little health insurance perk). They are patient with me when I am a little mentally slow--understanding and remembering all of this is not the easiest thing I've ever done! They are sympathetic when the price causes pain ($228 today) and they are cheerful when it's a steal (not that often anymore). Now, I find, they recognize me before I come to the counter! This morning, one of the staff people (whose name I don't know) had my various pill bottles and signature stickers all ready for me to go when I arrived at the counter. And she got a larger bag to hold it all when the usual sized bag would just not handle the task. I'm fortunate to be the recipient of such excellent pharmacy customer service, even if I can honestly say I'd rather not have had the pleasure.

About Jeff

His work ethic came from his parents and grandparents. He is into tools, tractors, and trucks. Thanks to his mom, he still has the toy trucks he played with as a boy, and now he shares them with our wheel-obsessed nephew, Wesley, who has Uncle Jeff on a pedestal as a result. Electrical, Carpentry, Plumbing & Heating, Appliance Repair, Car/Truck/Boat Mechanics are only some of his skills. He is a good dad, involved every day with our daughters and their lives and he teaches them things that may not be obvious to them right now but which will carry them into adulthood with more confidence and self-assurance than they might have had otherwise. Both of the girls know how to back up a trailer, for instance, and this is no small feat. Future boyfriends and their dads are going to be truly impressed by this skill! He is a volunteer firefighter and first responder and runs off at a moment's notice to help people. If there is an accident on the roadway, he will stop to assist, even though his family and dog are in the car waiting to get to some planned destination. He can fix anything...sometimes there is some frustration and some colorful language through the process, but one should not get upset by that. The outcome is always the same--whatever was broken will be repaired. He is patient. His wife has been dealing with a painful neurological illness that has led to many changes at home, in the bank account, and in the general state of things, and he doesn't get intimidated by tears. He has learned to say, "I know...that sucks." and other soothing, comforting things when emotions run high and tears are falling. He is sure that things will get better but accepts them for what they are right now, without complaint.

The Call...almost

Caller ID showed Froedtert Memorial Hosp, so I got a bit excited about the prospect of what would happen when I answered. I played it cool, though--not wanting to sound TOO eager, although I've been w a i t i n g so patiently (?) for how many weeks now? All this time, just knowing that getting the call and putting appointments on the calendar would give me a sense of comfort and peace of mind. Indeed it was the very, very nice Erin calling to say... (drum roll please) that I have been accepted as a patient!

BUT they aren't quite ready to schedule the appointments. Yes, I did remain calm. Why expend energy on something I have no control over, and besides she is so very, very nice. She explained that the doctor's clinic schedule has gotten kind of filled up with surgeries, so they have to get some things sorted out in order to get the clinic schedule to actually allow for clinic visits. By the end of this week that should be accomplished and I can expect another call to actually arrange what I need. Oh, and she clarified what they have decided I will need: an MRI with FIESTA imaging one week prior to seeing the doctor. I have never heard of this type of MRI, but evidently it has nothing to do with chips and margaritas (See? Only a very, very nice medical assistant would lighten the mood by saying that); it's actually a way of directly imaging the nerve and its offending blood vessels.

So, that's that. I take all of this as a good sign, really, and think that maybe I'll be one of those surgical patients who they see fit to plug into clinic time so as not to make me wait too long.

Or not. I just have to be patient. That's easier to say than do, like most things. Today was an okay day overall, so I feel like I got a little more resilience on my side of the scoreboard, and that always helps.

Job in a Box

Along with some significant moral support, I cleaned out my office on Saturday.

Of course, I am still employed, although on medical leave, but being "casual" means essentially that I don't have a permanent position. It means that I can be called to work when other people are on vacation, or if there is too much work to do for the regular staff and they need help covering, etc. It doesn't mean that I have an office or a desk of my own or that I am actually considered part of the staff or the "team" as hospices like to call it.

It was a pitching extravaganza as I went through files that don't need to be saved. The meaningful art on the wall was taken down (including an "office fairy" that Liz painted for me and a cross stitched piece that a family member made for me after their son died); all of the quotes and cards and funny things I had posted came down and put into the box. I saved a few things that I would need if I ever do have the opportunity to do my job again --resources and phone numbers and things like that-- but it looks like that isn't likely to happen. My position is posted and word has it that it may already have been offered to a brand new person who starts today. The coworkers who made a sound proposal to cover the position for the next six months were informed last week that their offer was declined.

In the past I've done this office cleaning process but always because I had chosen and been hired for a new, better job. This time, it feels so much more sad and poignant. I loved this job, even with all of its stress and craziness. This job fit all of my best skills. I knew I was helping people with each and every contact I had.

This is a huge loss for me.

No News is No News

Okay, it's the end of the week and I did not sit and wait for the phone to ring. And it didn't. Well, at least not to schedule an appointment in Milwaukee anyway. I did get nice calls from my mom and from friends and a couple of irritating ones from some anonymous recorded voice telling me to dial a 1-800 number...

So I made the most of today by being out of the house a lot and enjoyed the day overall. I had my hour of quiet adoration time early this morning, followed by a nice breakfast with Jeff after he dropped the girls off at school. We've been meeting at a downtown restaurant on enough Friday mornings in a row to feel kind of like regulars. And we always have the same waitress who knows us well enough not to even offer coffee. This is nice time for us since we never go on "dates" and spend most of our home together time in front of the TV, unfortunately. This morning I think I found the perfect breakfast. Swedish pancakes with butter and cinnamon. I highly recommend anything on the menu but these are fantastic (and soft).

This afternoon I joined lots of other Columbus parents at the Homecoming pep rally. It was great entertainment and although it was tremendously loud, I could just sit quietly (and not hurt). I am so glad our girls go to this school. The school spirit and sense of community there is unbelievable.

So now we head to the football game (mainly to see and hear the BAND)...

Getting through another hard day

This was a hard day. If anyone had asked me how I am coping I would have had a very hard time coming up with an answer. Trigeminal neuralgia came like a bolt of lightning (pun very much intended) and progressively has made its way into every aspect of my life. It's affecting my family, my friends, my workplace. For a long time I tried and was pretty much able to stay focused on the present day and that helped a lot in keeping down anxiety over the uncertainty that lay ahead, but now I am not able to manage that.

After a day of feeling sad and defeated and hurting, I went for a short walk with Chance and decided to go into the woods across the road. I stood there and watched leaves blowing down from the trees and started to think about all the other people I know who are carrying heavy burdens right now, too. I realized that we all have to find ways to cope and get through the hard parts...and I began to remember the things that help me.

Emails, calls and visits with friends, conversations with family, hugs, prayer, crying, writing this blog, listening to public radio, making soup, reading papers online, going to school things, walking with Chance, petting any of the cats (but especially Pumpkin, who has the perfect temperament), reading (for the few minutes I can concentrate before dozing off...), listening to my ipod, going to counseling, routine massage therapy appointments, my book group, watching Jon Stewart and Stephen Colbert, being around little kids, looking at my photos, making scrapbooks, reading blogs...trying to keep things normal.

Oh, the list will just go on and on. That's a good thing. If I keep that in perspective I will be able to remember that just because TN is affecting all parts of my life, it does not have to define my whole life.

and that is the end of another perfectly good volleyball season!

And Liz's team won the match, which is always a nice way to end a season. She developed more skills this year and is a fun player to watch--unafraid of falling on the floor for a ball (and accumulated several gruesome bruises throughout the season--should we have taken some photos to post here?), she is a good consistent server, good hitter (with a nice approach), quick digger, an almost 5' 6" blocker who jumps high, and recently, a setter in addition to all of that.

Basketball season starts soon.

After a lot of difficulty staying awake today, I did end up having a better day than yesterday. I met up with Liz after school for a trip to Goodwill for rock star clothes. It's Homecoming week---today was Grandma/Grandpa's Closet day. Then I went to my first Latin class. Yes, you did read that correctly. One of the priests, Fr. Redfern, is teaching introductory Latin. I figured it would be a good way to use and challenge my mind while I deal with all of this and it will also help me understand some of the things at church sometimes. It was a fully interesting and perplexing hour, and I have homework--real, honest to goodness homework!

I did talk to Milwaukee again today. The nurse has not yet reviewed my information because she has been busy with clinic, but will be in the right place tomorrow morning to look me over, and the very, very nice Erin will call me. She assures me that she has my name on a post-it right in front of her at all times, so she can't and won't forget me. I realize I'm kind of being the squeaky wheel, but I really cannot apologize for that anymore. I just told her I'm feeling antsy...and in pain...and so sleepy...

One of my dear and wonderful coworkers called today to say she has made a proposal at work, which if accepted, could mean that my job would still be open for me to come back into after all this is done. There's no guarantee of anything, I know, because we work for a very big organization that has policies and rules that don't always bend for creative and compassionate actions. Her call really overwhelmed me. How do I find words to thank people for being so selfless in trying to help me?

I have said it before and I will say it again--from family to friends, I am surrounded by so many people who care and who help.

Sad kind of day

Took a walk with Chance this afternoon in an effort to feel better after an emotional day. It was an impulsive decision. My first choice and (actually my plan) was to lay on the couch and watch an episode of The West Wing until I fell asleep. But I came inside, saw Chance looking excited and happy to have company, realized how nice it was outside and remembered how this is probably the last day of nice weather we'll have. So a quick change of shoes and off we went without even looking for a leash (he does a good job of staying close by and coming to a stop with me when a vehicle very infrequently passes us). During the walk I was looking for some distraction from the pity party I was having, and these rich red maple leaves caught my eye...we had to go into the ditch to get them, and as long as we were that far, we climbed in between the barbed wire fence opening and trespassed in the woods of a down the road neighbor. I think it was entirely worth it.

Why the pity party? Mainly because today was the day of my work meeting (to discuss my need of another leave of absence), in which I was changed to a "casual" employee. That means my position is no longer mine--it's being posted and will be up for grabs. As casual, I'm still considered an employee but one with no benefits and no regular hours. Of course, I cannot seem to work regular hours anyway. My attempt to work again in August and September failed miserably as my pain increased exponentially, and here I am on even more medication and still having pain despite that. So it has just been a hard day realizing that even though I knew this was coming, I am sad about losing my position and worried about all the unknowns ahead. It is just one major reminder of how life changing this illness has been for me. I do know that we will be okay, but feeling sad, discouraged, and defeated like this is all I can muster right now.

"Pretty Good"

Well, at least my neurologist thinks I am doing "pretty good." That's what he told me after he said he did not want to change any of my medications. He said I am on high doses now, and though the concern is not about the blood test levels, or about harming my liver or kidneys or anything else, he thinks since I am lucid (says the main concern would be if I got to feeling "drunk" from the meds--which I am not) and in his estimation doing "pretty good" right now, we'll just keep things the way they are. All I can say is this: I've got his number. If things get worse, that will be my voice on the other end of the line...

Sparks and sizzles and zaps, oh my!

Yes, the pain is ever present. Well, actually, it's not present when I am quiet and not needing to scratch an itch, sneeze, do other hygiene related things, drink water out of a bottle, eat something that requires chewing, etc. But when I try to carry on normal daily activities and be social with other people (like eat a hot dog and talk with fellow parents at Liz's great volleyball match tonight), then the attacks come furiously. I realized in the past couple of days that I have not had the anxiety so much this go-round. I basically know when the pain is going to come. I know how bad it is, can be, will be. These are things I used to feel worried and scared about. It seems strange for me to say that it's not affecting me like that right now. I just know it hurts, it will continue to hurt!



Laura just saw me take my 9pm meds and expressed a bit of dismay over it. It is quite a handful of pills. "It looks like you are on drugs, Mom!" My answer: Yes, honey, I am.



Froedert called today to say that they have my medical records in their hot little hands. Because the nurse who does the initial review is gone the rest of the week, she will review them on Monday. And then I can expect a call to schedule my appointments. How simple!



So in the meantime, tomorrow I see my neurologist and we'll be talking about upping something so I can get better pain control. The new med, Dilantin, does seem to be helping with my pain in the mornings, but I'd prefer better coverage in the afternoons and evenings. I think he will prefer that for me too!

Oh, and I have a massage scheduled for 11:30!

This past weekend I went to a Labyrinth Retreat with some close friends. Not knowing much about labyrinths, I was going into this with a very trusting attitude, but also expecting it to be a good experience for me personally. Plus, I know that time spent with these three women is always a good thing. For the uninitiated, a labyrinth is not the same thing as a maze--a maze is designed to trick you (think of a corn maze and that horrible part of I think the 4th Harry Potter movie). I learned that there are different styles of labyrinths, with various traditional patterns. A labyrinth has all sorts of symbolism associated with it, but basically it is a path that you follow to get to the center and then you walk the same path out. You will always come out more calm and centered on the way out than you were on the way in. It was a very peaceful experience. We were at the Pilgrim Center on Green Lake and they have just finished an outdoor labyrinth, where the path is outlined in rocks. It's in the middle of the woods and just beautiful. Our group was the first to use it, and we participated in its formal blessing. I don't think I can really find the words to do justice to how it felt for me to walk that labyrinth with 20 other people, quietly, privately thinking, praying, letting go of anxiety. There are some trees in the path, which are an obvious metaphor for life's challenges that get in your way; there were also places along the path where the sun broke through the canopy and you could just choose to be still and soak it in for a moment.

Having faciliated many a grief support group, I wonder how many times I have reminded someone that you really cannot compare losses and griefs? No two are alike and a there is no way to get an equal comparison. It's a common thing to do to try to feel better, I guess. Today I met a woman I have known for a long time who knows nothing of what I've been going through, and she told me about many devastating things that have happened in her family in the past year, and after we talked, I found myself thinking, well, I guess I can cope with this illness and pain--at least it's not as bad as what she's going through. It helped me gain perspective for today.

When the girls get home on the bus (the worst part of Laura's day--rowdy kids who swear and say stupid mean things. I hear her outrage every day!) I will help Liz with her most recent Huck Finn essay and have Laura finish the grocery list she started the other day. Then we'll turn around and Liz will drive us into town, drop herself off at play practice and Laura and I will get some shopping done. I am not excited about driving tonight but with company and determination it will be okay. I have a safety zone of about 15 miles from home. It has been 6 months since I have driven anywhere out of Wood County! I trust that I will be able to venture out again one day.

The very, very nice assistant to the neurosurgeon I would like to see in Milwaukee has told me that they still have not received my medical records! This is the first thing that must happen before I get an appointment scheduled. So I called the very, very nice Debbie at Marshfield Clinic who is re-sending the whole 63 page pack to them right away. The first pack was sent to the Medical College and not to the building where patients are seen, so my medical records are floating around the huge medical complex... You know, I'm not even too worried about this because I know it's just a matter of a couple of days and I know I'll be on track.

Feeling Blah

Today is the third day of a new additional medication to deal with the pain in my face. It may be having some effect on the pain at certain times of the day, but it's really not that much better. It also has this not so nice feature of drowsiness as a side effect, which I noticed right away. So yesterday I napped the afternoon away. Today I have been trying to muster up some motivation for a walk with the dog, when what I really have motivation for is sleeping with the dog (Chance is a great napper himself). I see my neurologist this Friday, so I am hoping for some modifications in the med regime. By then I am also hoping for an appointment date for being seen in Milwaukee by the neurosurgeon who may be willing to take me on as a patient and perform surgery so I can feel NORMAL again. That all seems so far away to me, though. So I will just continue to plod through today and then tomorrow...

Finding the Right Word

One of the things I have had problems with since taking the Carbatrol ( a long lasting version of tegretol, which is normally used to prevent/control seizures but is the first line treatment for TN) is getting the correct words to come out of my mouth when I want and need them to. Commonly it's a situation where I am talking to someone and just cannot find the right word for something. I may be intending to say the word "locker" as in, "Did you get everything you need from your_____" and after floundering in my mind for a bit, I'll have to say, "You know, that place where you keep your school books." Then the person I am talking to gets it and on we go. The other way this happens is that I will simply make a statement with a completely wrong word, like tonight when we were sitting down to dinner (nice soft cheese ravioli) and I said, "Does anyone want to sleep?" What I really meant to say was pray, so after we got done laughing we did take a moment to be thankful for the gifts we've received, the people in our lives, and the time spent together as a family.

I have been trying to keep a sense of humor about all of this, and it makes me feel better but probably helps us all to be more at ease.

A Day Like Any Other (?)

Seems that despite the chronic pain of TN I am still having normal days. Of course, my days don't involve working at my job or anything productive, but if we adjust the definition of normal for me, then that is a good description. No school for the girls today somehow, and Liz (15 1/2) needs driving experience, especially left and right hand turns, so today she drove me around from place to place and accumulated some country driving and some town driving (hard to call Marshfield a city, really). First we went to the vet and took our new kitty, Marilla, in for her check-up. She's growing just like she should be and she does not have feline leukemia, which was a relief since my sister recently had a kitty who died from it (we loved her,too) and because Marilla was found in the Pamida parking lot before being taken to the humane society.

After that we all (minus Jeff, who works) went to town and visited the bank (drive-through lane skills are important for any driver), the lady who does alterations (hemming for money), Shopko for a return, the (s)Mall for a search for Homecoming shoes (everyone goes as friends this year), CRP Ceramics for two lovely handpainted flowered piggy bank gifts, and Subway for something to eat before Liz shuttled us all over to meet the volleyball bus. Somewhere in there, Laura baked some interesting and tasty sugar cookies (loves to bake and current emphasis is on use of food coloring) and Liz and I "ran lines" for her part in Pride & Prejudice. She is Mrs. Bennet and captures the part very well, I dare say.

The volleyball match was a loss but Liz came home with a new bruise just above her knee. She wants to report that it's really big and already turning purple. Badge of honor.

It was also another normal day of repetitive and really unrelenting electrical zaps, the apparent proof that my medicine is not doing its job as I would prefer. This is when it hurts:

1. when I brush my teeth, wash my face, blow my nose, etc. Interesting and creative adjustments have been made to deal with these necessary activities.

2. when I pull a shirt on or off over my head--don't underestimate the shock and awe of a light tough of fabric brushing over that sensitive trigger zone under my nose and above my upper lip.

3. when I eat--soup is my friend.

4. when I drink--I think I will be getting some bendy straws pretty soon.

5. when I accidentally forget and scratch an itch in that trigger zone.

6. when I talk--loudly or using a lot of hard consonant sounds. I don't know why, but my working theory is that the vibration is bothersome. So I like being quiet right now when I can.

7. when I cry, but I kept that at a minimum today.

I did call my neurologist today and left a detailed message about my circumstances and my need for help with my pain. I did not get a call back. I will call again tomorrow morning.

A Creative and Innovative Idea a' la Laura

So I was just complaining again about how many shocks I have been getting today, and Laura (13) says, "Wouldn't it be great if we could channel that into electricity to use in our house? And from Grandma we could get the gas we need!"

It's been a hard day but a bit of unexpected humor always gives me a lift.

First Things First

Man, have I been procrastinating today. I am actually trying to avoid anything that will cause pain since I have had more zaps than I can count already and it is not even noon. BUT I can say that after months of thinking about it, I have started this blog.

The plan is for this to be a way to write every day or so about how things are in my life with Trigeminal Neuralgia (why do I always see that capitalized anyway? Is it so important that it warrants that?) and also about the rest of my life beyond the pillbox.

OKay, now it's time for a rainy walk with Chancie boy...