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.