Those New Years' Resolutions

I suppose I will try this again, although resolutions never seem to work out. But maybe if I write few thoughts, I'll think about them, and they will guide me. So here I go--subject to revision, of course!

1) "Motivation is what gets something started. Habit is what keeps that something going." I know doing my BORING exercises helps me. It was quite evident that when I tried to get away with not doing them, my skiing was a disaster. To the resolution is to re-establish the habit of doing them regularly, and keep going.

2) Listen, listen, listen. I firmly believe that God speaks wonders all the time if I listen. So, listen to my life. Listen when I am pushing too hard. Think about what that means and what I can do about it. Know that God is right there, pointing things out, if I would just listen.

That is enough. If I do a better job at those 2 things, life will be better.

Happy 2009!

And from our pastor, this Franciscan prayer--awesome!

May God bless you with discomfort, at easy answers,
half-truths, and superficial relationships,
so that you may live deep within your heart.

May God bless you with anger, at injustice, oppression,
and exploitation of people, so that you may
work for justice, freedom, and peace.

May God bless you with tears, to shed for those who
suffer from pain, rejection, starvation, and war,
so that you may reach out your hand to comfort
them and turn their pain to joy.

And may God bless you with enough foolishness,
to believe that you can make a difference in this
world, so that you can do what others claim cannot
be done. Amen.

Where did you find Jesus this week?

I read that question on another blog. Where have I found Jesus? Now that I look, now that Advent is over and I pause (I should have paused DURING Advent), here is where Jesus was and is--everywhere.

- when I was sick, telling me to rest
- when I was skiing, telling me I was doing too much
- when I was taking a day at a time, wanting me to pause instead
- when I want to say yes, to learn to say no, or not now
- as I've been thinking about wanting more time to write
- when I think of my mom
- just now, when I was sitting here and "How can I keep from singing" came on
- as I now go to bed, with those final thoughts before I drift to sleep

Where is Jesus for you? Do you feel it? I do.

Christmas, 2008 style

Here I'm sitting in the middle of my living room where I can only see a few spots of carpet. The same can be said for the rest of the house. It would probably be this way anyway, but I'm allowing myself to sit in the middle of this mess and write, because it has been quite a Christmas week!

Flu season! So much for the flu shot?!! I've been waking up with a fever each day. As a person with MS, that means I can't walk until I have some Tylenol. It started really hitting Monday afternoon, as I sat trying to wrap presents--not being able to detach the tape, not being able to use the scissors. Then my husband returned home and found the Tylenol. Christmas morning was perhaps the worst. I woke up and could not move--rolled off the couch (I slept there so I wouldn't wake Dave up with coughing). I pulled myself to the Tylenol, then just sat there until it took effect. Then came the head cold. What a Christmas!

I thought I'd do some uplifting Christmas post to me, in celebration of making it to Christmas. I did make it, if one calls this making it. And now, these 12 days of Christmas are a recovery time, a realization that I was going to be hit with something, sometime, in the process of doing way too much. Listen Beth, listen!

Holding things together, one day, one person at a time

It's that holiday time, when everything seems about ready to be out of control, and each year I try to get through it all, and wonder if people realize how difficult it is for people with MS ? Then throw in those _people_, and there's this lovely wonder of trying to hold it all together. And this is Advent, a time when things should not be so chaotic, and yet they are, especially this year.

For the fun part--the _people_. I have to wonder what goes through the minds of people--do people think at all before they just let things fly out of their mouth? So many examples, but I'll just take today. I was volunteering at my daughter's school. It would be my hope that in so doing, people would see someone with a disability as a person. Instead they just say the stupidest things. Today out of the blue someone who I don't know, rather than saying hello, said "Is it hard to move that wheelchair through ice?" Hmm...let's think about that! Then, no hello, but "you should get an electric one of those" from a different person. I think I could write a book with all the comments I've received! Manual, or non-electric wheelchairs, are for people who have enough arm strength as well as ab strength. They are also less expensive. Electric wheelchairs--well, just leave it at they are costly, one needs a different vehicle than what I have, and more. Ugh. I really do people think you pick up these mobility devices at Walgreens, maybe with the drivethrough option!

Back to a day at a time. Every day it seems I have some extra activity. I work full-time. And there is so much to do. So I try to take it day by day,wondering what others do who have MS. I get to my house, walk up the steps, and wonder how I will go to the bathroom, feed the cat, give Lori a snack, and get myself something to eat? Since the me, eating thing comes last, there's no energy left. Today I sat on the bench (I don't use a wheelchair at home) post other stuff. Sitting there, I realized I forgot to get medicine for Lori, but then she decided she wasn't really sick--ok... So, I had the loaf of plain wheat bread. And I had Lori with new books waiting to be read. So I had some bread, then we read the book, then back to the bread. Wheat bread with nothing on it is really not that good.

Made it through today. Tomorrow I hope will be better. And the next, and the next. One day at a time in this season of Advent where I wish I had time to reflect, and instead I'm rushing around like everyone else, because my mind will not slow down.

Peace.

Helen Keller and The Miracle Worker

Today my husband, daughter, and I saw the play "The Miracle Worker." It was about the time from Anne Sullivan's arrival as Helen's teacher, to the time at which Helen understood the meaning of words.

Watching the story unfold, and knowing how accomplished Helen Keller became, it was surprising to see the early struggles, how "Annie" took Helen next door to live so she could isolate her, break through some of Helen's stubbornness, and make progress. Then after a time they returned home and Helen immediately began to regress. But also, right after that, the breakthrough came, she understood the meaning of words--Annie had connected with Helen as a person.

Just looking at the general world, there is a time when things "click" for people--like when a child learns to ride a bike, or even learns to walk. For a person with a disability, it can be different. So as the play ended with Helen "getting it," I was brought to tears. I thought of times, with MS, when I still can learn and "get" things. I thought of skiing, when things were not clicking and then started clicking. I thought a bit of handcycling and how it started to click. And for these activities, there are still barriers to getting further, but things can still click. It's beautiful really, how disability can be "turned on its head." Just beautiful.

Thanks be to God for the beauty of it all.

Mentors

One of my mentors spoke and wrote on his mentors, so I thought I'd write on mine. Here are the mentors who have had the greatest impact on my life, "saints," who have given me the gift of grace.

My mom, my rock, who before I could understand, showed me true love, and then as I grew up, became my best friend--who she still is today.

My coaches. Coach Luckasen, who showed me that if I make a seemingly impossible goal, I CAN achieve it. Coach Gomez, who showed me that I can reach my goals by breaking the big goal into little pieces, conquering each piece, one at a time. Coach Charlie, who helped me to see that I am and will always be an athlete, and who also became a friend with whom I can share tremendous sarcasm, smile, and laughter.

My doctors. Dr. Schermer, who (is making me cry now) looked me so many times directly in the eye with driving compassion, and helped me to continue to believe in myself. Dr. Mulica, who paused to ask if I was ok, who continues to pause when I see him, and who "gets it" with MS, points to my head, and tells me that my mind drives me where I want it to go.

A few pastors. BE Palmer, who was there and prayed for me shortly after I was diagnosed with MS, when I first felt the great presence of God, there, holding me. Pastor Joe, who somehow, some way, brought faith back as an important presence in my life.

And in keeping with the format of the mentor who got me to write this, the Trinity--God, Jesus, and the Holy Spirit, for helping me to feel that presence, for reaching me a year ago when I was desperate, for showing me peace, for leading me to ask for help when I needed help, and for maintaining that presence.

Thanks be to God.

Giving of time and talents...

The stewardship talk I gave at church on Sunday (or something close to it!)

This week I’m giving a temple talk on time and talents, although do I need to remind you to turn in your envelopes reflecting monetary stewardship?

I was asked to talk about time and talents, how they relate to my faith experience, and how they have been a large part of my life. A bunch of ideas then mulled in my head about how to approach this, what stewardship means, and what I wanted to say.

This week, ideas still churning in my head, I was meeting with a physician collea gue and eyeing all his books. At some point we began talking about various books when all of a sudden one caught my eye: Stewardship. I borrowed it—not religious, but it is from a public service perspective. It says “Stewardship taken seriously is not an economic strategy or a way to achieve higher levels of productivity or to succeed in a marketplace. It is also an answer to the spirit calling out.” I like that.

Stewardship can occur at so many levels—I recall the hardest time of my entire life early last December when I reacted to a drug and was thrown into a deep depression. I remember driving around, picking Lori up from daycare, wondering how I was going to get through that day, and so on. And then I found myself driving to an Advent service at Holy Love. There, for the first time since the reaction started, I found a sense of peace, a sense of pause, and I realized I needed help. To me, stewardship can be that simple--it's about relationships, with God, with this community, in the simple context of coming to church when I am struggling most in life.

First Corinthians says,
"Now there are varieties of gifts, but the same Spirit; and there are varieties of services, but the same Lord; and there are varieties of activities, but it is the same God who activates all of them in everyone." - 1 Corinthians 12:4-6 [NRSV]

So, for me, thinking further about time and talents (not sure about the talents piece!), I’d include being a lector, assisting minister, and singing in the choir. When I was first a lector long ago (another church in Minnesota), it was just something I wanted to try for no apparent reason. Same with most things I do—I just want to try them. Then I find a sense of passion—when I lector, I think about the scripture more than when I listen to other people reading it—the text seems to mean more. When I read the prayers of the people, the same thing happens. When I sing certain music in the choir, I feel it pretty intensely. If I do not feel the passion, I may not continue to do something.

You have a sheet with possibilities for time and talent stewardship. Please consider choosing to try a couple. You may find a new passion. But more importantly, you will feel the sense of community here, and the community here reaches to broader communities—there are opportunities there too. So I’ll close with the following quote. I love quotes and this one I try to read before bed each night, as a way of reflecting.

“Listen to your life. Pay attention. Observe. That wonderful phrase, "religious observance," means observe religiously. Don't just get through your life, as all of us are inclined to do, on automatic pilot, not much noticing anything. Listen."

Thank you.

Priceless

Today I picked up my daughter from school. In the car she stated in a distressed tone, "I don't know what I want to do when I grow up! I don't know if I want to be a nurse, or Ariel, or a princess, or an artist, or a child of God."

Oh, to be 5 again! :)

Listening and observing life

Listening to life:

I have a 5 year old daughter. The best part of having her is cuddling with her and reading, some she does and most I do. And to hear a 5 year old laugh is so wonderful. Wonderful life.

Today I saw my counselor and she had a great idea. She could get people with DIFFERENT disabilities together to talk not about their diseases, but about managing living, things like how to get through the holidays. That would be so awesome. Interesting life.

So for me to get through what my mom has going on, and how that makes life so much more complex...we talked about that. My mom has started chemo and has still been able to come and help me a bit. I worry about how hard chemo is, and how it depletes a person, and it just seems to stink, and that the whole thing shouldn't be happening to my invincible mom. So what to do? Perhaps pray. Maybe meditate. I haven't figured that out. At other times, I've had this sense that God comes out and says "Hello Beth. I'm here. " I'm still waiting for that. I'm feeling out there and alone. Confusing life.

So I decided with all the recent stress in my life, I should find 15 minutes a day to do some kind of listening exercise, maybe meditating is what I'm thinking. Or reading these short essays. Or listening to music (I dug some up today) I was thinking writing this blog could do it, but then my husband came in to tell me about his big pay increase. Distracting life? :)

But I go back to this book I have, which has an essay by a pastor, who says to Listen. Observe. Observe religioiusly. Don't just go about life, going from one thing to the next. Really listen. God, please help me listen better and show me you are there. I'm hoping there's some glue holding everything together, but it's feeling like pretty weak glue!

To ask, to observe, to help

A friend and I have been corresponding back and forth and realize that we have a problem! We both have MS--lately she's had some financial difficulties stemming from her MS while I've had some physical difficulties stemming from my MS.

So apparently we each go through this thought process in terms of asking for help. Who should I ask? Am I bothering themz? Is this going to work if I do ask? Will thy think I'm a slacker? Well, what the heck--why doesn't anyone notice I'm struggling? Why doesn't anyone ask if they can help? Asking and observing.

With my mom going through chemo, my "assistant" may be on hold at various points. So therefore, the house seemed to be falling apart. I would come home exhausted and just look at our disastrous living room--yuck! Kids stuff everywhere. And I needed my clothes moved to transition seasons. Who to ask to help? My mom was able to come yesterday and so the problem got delayed.

But why is it so hard to ask for help? But then why is it so hard to oberve that people need help?

Insensitivity and thanks

This past Monday I was sitting waiting for my daughter to finish dance class, when I was overhearing this woman talking, then with another guy, and oh, so hard to keep my mouth shut! She was talking about doing some craft fair, how next time she's going to use the "handicapped parking" (when are we going to call it "accessible parking???") because of all the steps. Then she went on--her knee hurts--maybe she should get a knee replacement, her rotator cuff hurts, and there was something else--blah, blah, blah. Then she went on--had gone to some stadium--this is where the guy seemed to chime in with agreement. She was about to leave and the cleaning people were coming in and they looked homeless. And the guy was in agreement with this.

Come on! So I was sitting there with my walker--you think nothing hurts for me? You think you have it so rough and then can pick on people who are out there, working hard. As I said in my last post, I've been listening! I think maybe people should be more thankful for what they DO have, and thankful to hard-working people who are cleaning up their mess. Maybe this lady should be thankful she CAN walk. She was probably the one who parked in the ONLY accessible spot last week, so I sat in my car during dance. Then the comment about the people--I am thankful there are people out there who work hard given they might have a difficult life.

This kind of goes with a company picnic I attended a few years ago--thank goodness I left that dept! There were 2 clicky people who saw a homeless guy and were sure they saw him urinating and were just "Can you believe that?" about the whole thing. And then someone else made a comment that he must have some kind of mental problem. Again, why rip on him instead of thinking of how you can maybe help him.

So in rapidly typing this brainstorm, I won't list all my complaints although the past week has been tough and filled with stress. I will say I'm thankful for my family, and for my wonderful 5 year old daughter who has her moments, but is a true blessing. I am thankful that I still work, so our family has money. I am thankful that we can live comfortably. I am thankful for friends and family. I am thankful for an awesome doc I have, so when times are tough, he gives me his direct work, home, and personal cell phone numbers. And I'm so very thankful for anyone who asks if I need help, even if I don't, because I know they care. I'm thankful for those who offer and give help when I am struggling. And I am thankful for Willy, from some posts back, because I know he prays for me and keeps me in his prayers, and doesn't forget about me. I hope he is doing well.

Faith, love, peace, and hope. All very important.

Looking and listening

I was reading an entry in The Life of Meaning recently. It was by a pastor who, at times, has had doubts in faith, but has always come back. He reports that in such times, he looks around and listens carefully. There is a lot of bad stuff out in the world.

Then another pastor, pastor Joe Holub, writes "Progressive Christianity often uses the term panentheism – that is the belief that everything in creation is in God. God is not a separate being living “out there” or “up there” beyond the circle of the sky, but God is all around. We and all creation are in God. As we relate to the world and the people around us, we relate to God. Respecting creation and people is to respect God. Exploiting creation and people is to exploit God. To experience God you need not begin looking any further than into the face of your neighbor, and if Matthew 25 means anything at all, the face of your neighbor that is suffering."

So I've been trying to look and listen lately, since so much of my life has seemed in turmoil. My mom has breast cancer--the outlook is good, but yet knowing she will have to go through chemo is not that fun. So that has been hard. And I think, what about the people who do not have health insurance at all, and don't have preventive screenings, and so would get caught at a point way past that where my mom is now. And I think of me, me, me. Am I allowed to do that, because it makes me feel guilty? I've struggled with a roller coaster of emotions, and this has affected my MS--stress just does that. Today my legs decided I needed to sit on the floor of the shower to shower--ok... And overall I've felt exhausted and completely distracted.

So I look around and listen. Communities are out there. They do not solve everything and they overlap. My mom has tons of friends--I never realized that--and they hav brought her meals, called her, etc. In a different world, I've been one of the ones organizing a disability awareness dinner and that will bring people from the general disability together to connect. At work, my boss tells me that I will go through emotions of anger, grief, and anything I can imagine. Church has its own community, and communities within that community, and those are supposed to reach out to a larger community. So I listen and that's what I see now--communities out there to help each other. That seems to fall in line with God being everywhere.

Before I read the entry in that book, I was doing my daughter Lori's laundry. I had it in her room and was folding her things. Suddenly, I did become both mad and sad in the same instance, crying and thinking that this isn't supposed to happen. We had a good system going. How could it all be thrown out of wack now? But God is all around--in comunities everywhere. I believe that I will still look and listen, as these communities serve to help society. And I hope to feel the presence of God someday soon.

Anyone from Colorado???

Short blog, but in Denver, on Tuesday, Oct 7, I'm coordinating a disability awareness dinner. It's to be a fun event, sponsored by Kaiser Permanente (where I work), and coordinated by our disability association within Kaiser. If you live near Denver and want more info, email me at yawbeth@hotmail.com and I'll send you more info. It's a FREE dinner, raising NO money, and we're having a stand-up comedian as well as a performance by PHAMALy, a professional theatrical group comprised of people with disabilities. So, join the fun--it's free!!!

My mom, my rock

I guess this is one of those diary entries, but yet I need to write it.

Since I was diagnosed with MS, my mom has always been there for me. She always listens; we always talk; I can tell her anything. She is my rock--my best friend. She has been coming once a week for quite awhile, to care for Lori, and to help around the house. She does my laundry and that of my daughter's. She waters plants for me. She teaches Lori some of the things I cannot teach Lori. My husband doesn't seem to understand all this, the needs I have, the help I need. Nor, I think, do most people. But this isn't about my needs.

Last week I came home from work and my mom told me she needed to tell me something, and that I would be jealous. She was being funny and it was strange. And then she told me, and I know more today, as one thing led to another. My mom has breast cancer. Tomorrow she'll find the stage of it and determine what treatment to pursue. My mom. My rock. The person who I thought may never age.

She will most likely come through this fine. She has a great attitude and wants to get on with life. I know this is possible. But this rock, this person who was not vulnerable. Why? And what a year it has been, with my dad getting through prostate cancer after being diagnosed last November. So, parents age. I never thought they would. I am still digesting everything.

Friends will say what can they do to help? I don't know. Perhaps give me a hug. Definitely say prayers for my mom. Help me to know that I won't be alone. I don't know how anyone can do that. Give me hope. Help me to find some way to exist without my rock, as she will need time to heal. Is this possible? God has always helped me through tough times. I am hoping this will be one of those, where I feel help.

Love your neighbor as yourself

I'm not going to church tomorrow because I yanked my shoulder and my hip has been hurting, at night and especially in the morning (MRI next Fri for the hip), and I'm feeling guilty about it so was out reading sermons and here's a section of one by my former pastor, Pastor Holub:

"Love your neighbor as yourself." So who exactly is my neighbor? If I take seriously all the biblical connections that this verse ties together, it’s the ones who look a little or a lot like Jesus, that’s who! The ones who are sick, lonely, lost, imprisoned, thirsty, starving, frightened, oppressed, poor, homeless, disenfranchised, displaced, grieving, refugeed, rejected and dying. The ones who look like Jesus on his way to the cross: the victims of devastating hurricanes; those dying of HIV/Aids; starving and orphaned children in sub-Sahara Africa; the unemployed and under-employed; the lonely teen-ager; the abused woman; the forgotten aged, and also the "aliens" among us, who have been branded with a disparaging name by our culture – "illegal".

I like this--the sermon talks about the parable of the good samaritan, where who is most like Jesus? It's perhaps not the person who saves the poor man in the ditch--it is perhaps the poor man in the ditch himself.

Sometimes I feel like that poor helpless person in the ditch, although I put on a darn good act! But there are others who are so often in those helpless situations, and those people did not put themselves there--it just happened.

God, please help those of us who find ourselves in those ditches, particularly those who get stuck there for far too long.

The Life of Meaning

That's the title of a book I've been reading. I saw it on Sojourner's, but then the Forward was by Tom Brokaw, so at that point I HAD to have it!!! Now I have it, and it has a valuable place on "the bench," where I put on my shoes on in the morning, and tend to collapse when I get home. This book is compilation of interviews and writings with various people of various faiths. It's great because all the entries are short, so when I have 10 or so minutes of collapse time, there's something to do (I hate just sitting there). One of the first essays--maybe the first--I read on a woman with Crohn's who talked about having Crohn's, but then further about how going into medicine for physicians is about the power to serve. And I read an essay written by a pastor who has Parkinson's where he has a positive attitude, but ends the essay with "Damn it." My thoughts exactly! I love how this book, with these short essays, is a calming force. I read about how some people spend so much time praying or meditating. I guess this is my way of doing that. If I were to pray or meditate for a long period of time, especially in the morning (thanks, Valium), I am pretty sure I would fall asleep! :)

Now, I suppose I should go post a review on Amazon or something. Then again, maybe not. Too many things to do, too little time. So if anyone actually reads this, you should buy the book! It doesn't really matter if you are religious or not. And, like I said, Tom Brokaw wrote the Forward!!

Groups

I listened to a sermon today and of course I can't remember the context of the whole thing, or maybe even the whole point. But what I am still taking away with me is the context of groups. Everyone has a group, or groups, to which they belong. Even within a group, there can be subgroups. So, a church is in essence a group, and within each church are groups of members who relate to each other and thus form subgroups. And partially the idea of a church and other places is to reach out to the community, or within the church, to people you don't know or new members, so as to not be so group-oriented.

In my world, I've always been on the outskirts of several different groups. Now, I'd say my biggest focus is in the disability arena, so that could be a group of people who have MS, or people who have disabilities. Now, if I want to go out and broaden that group, or to reach out and make it a part of mainstream society, we are just not there yet. So many people who do not have disabilities simply don't "get it." Often times, I feel like we are MIA, so if we are to join with mainstream society, that won't work--we're forgotten. Then I feel like I must fight for understanding and inclusiveness--where are we in advertising? Where are we in mainstream media? We are invisible, so how can we take our small, unrecognizable group, and merge it with something bigger.

First, we need our group more recognized. So when I go skiing and handcycling, instead of people staring or gawking, we need to feel part of "the crowd." While some may not view this as being recognized, it is, in its own sense. Then we have wonderful people who are volunteers who often make our lives as athletes possible, and they perhaps bring us closer to being included in mainstream society. And then, beyond the volunteers, then we need to be seen as included in mainstream society. Until then, I think our group is important, and needs to remain as its own entity.

Another part of this is understanding. No one "gets" what it is like to be in another's shoes. But within disability, there is more understanding. Someone else who uses a wheelchair certainly can relate to me using a wheelchair. Someone who uses a wheelchair will probably best be able to coach me. And so I guess I don't want everyone else involved, especially when they they don't really get it. So can our group expand to be more mainstream? Yes, hopefully. When? Who knows. That is a good question. If anyone saw the Home Depot commercial during the Olympics, you saw inclusiveness. That, I suppose, would be the aim.

God, please help us all to "get it," when it comes to other cultures.

Then and Now

18 years ago, in a town not so far away ("Ft. Fun") lived a high school girl named Beth. She loved being with her group/culture--the runners. In the summer, one morning each week, "Coach" would pick her up, then Kirsten, and head to the foothills to run up the switchbacks. Along with being with the small group of friends they met there, what made the early trip worth it was getting to the top of the switchbacks, pausing (rest break!), and seeing the beautiful Horsetooth Reservoire, still in the early morning hours.

Many years (18+) later, the same girl, Beth, couldn't run, but she was still and athlete who was willing to get up at 4:3oam to drive (had to do it herself now) to the mountains to be with some of her favorite people who shared her passion for being together and handcycling. This weekend, the last weekend of group handcycling, a van then drove the group closer to Glenwood Springs. Handcycles were then unloaded and the group cranked 15 miles into Glenwood. They rested in a park, Quentin and Beth "flinging" themselves off their bikes and onto the grass--you can't do this without a handcycle, but you wanna try? The van driver eventually found the park, and the handcyclists relaxing on the grass. They were so relaxed that he asked them if they wanted their wheelchairs, and as he left to get them, an anonymous (though not Beth!) handcyclist added the hilarious and sarcastic comment "hey able bodied person, do you want your feet?" Beth laughed so hard the tears almost came.

In both "stories" Beth returned home feeling fulfilled, loving that life, though she was really tired after the handcycling and confirming temps were in the 90s that day. So, there's a tiny bit of Beth's world lately. Returning home, there's some stress--she's giving her kitty fluids under the skin daily to fight renal failure, and is going to have an MRI of her hip soon because steroids over the years may have caused some damage--ouch. But all this is do-able and fine when she has fulfilling experiences like this weekend's, with something telling her to go, go, go...

My daughter keeps singing the first line to the following refrain, so tonight we learned the whole thing:

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

Such interesting lyrics, especially in light of starting Kindergarten, for everyone involved. Everything is so new, different, and somewhat chaotic. But yet, I suppose it all will even out. And maybe someday, I'll run through an open door again.

Abundance

I'm hoping this doesn't feel too much like the diary-entry that is in my mind of things that have been going on in life, but here goes... Today in church some of the sermon was about how God is a God of abundance, which went with the reading of the loaves of bread and fish, how they were divided, and the different interpretations of this Bible passage. There are so many things to consider where God is abundant. I have MS, but I still have unique gifts given to me, and I do thank God for those gifts. I almost didn't go to church today, due to the heat, and some nasty bug I caught where I couldn't walk or feel or move my fingers at all. Not a fun 2 days! But last night I woke up and my legs ached so badly and I knew I needed to walk again (I use a walker at church). So I went to church with this horrible attitude, got there, and there was a sense of peace, just there, which I took in.

Recently I moved positions at work and into a new building, the building where all the big-wigs are. But in that building I met Willy, the one who has been there each day as the custodian. Always, he smiles. To see him, I smile. The exchange of smiles brought us a friendship, where I learned of his family, he of my family, and I also learned he carries a deep faith with him. So many times he would point at me and say, "Something special is going to happen to you, Miss Beth." And then he stopped specifically by my cube one day recently to say goodbye. Someone with more seniority is taking his job and he will have to work nights in a different building. He is a gift to the world and I am saddened that my friendship with him was so short-lived (yes, I cried). His parting words, of course, were how something special is going to happen to me. He told me he used a wheelchair for 3 years (other reasons). I wish things could get better for me and though he sees the something special as me completely ditching the wheelchair, perhaps that something special was his friendship. And of course, it wasn't with one of the big wigs. That just wouldn't be me. His friendship was God's abundance.

And then there is the person from a different dept with whom I have to deal at work. She is older, thinks she owns Kaiser, and thinks she is teaching me how to do my job despite the fact that no one likes her, and she really is just making me feel like growling. She does want to walk all over me as the new and relatively young one. I struggle with wanting to lash back. I don't really want to do that--that goes against what I believe I should do. And yet, I cannot have this walking on taking place. It's a delicate balance. I think I've figured it out, but I really wonder what God's answer would be. Is there a gift somewhere in there?

And for final thoughts, my daughter started Kindergarten which is an adjustment--she gets tired and tries my patience at the end of the day. While trying my patience, the heat is trying my patience--she's melting down emotionally while getting into the car, and I'm melting down putting the wheelchair in the car. I am melted emotionally by a cat in renal failure, who seems relatively ok, but I'm giving her "cat dialysis" (fluids under the skin) regularly. It all seems like so much right now, but it did seem like too much so things are down one notch. Those of us with MS continue to mosey along, cognizant that whatever gifts of mobility we do have may not be with us forever.

Thanks be to God for the abundances he has given me. Now I'd better go see what my husband and daughter are doing--I hear noises from the trampoline!

Letting Things Go

Today I decided to take the day off of work. Last week I had an MS exacerbation so I could hardly stand up in the end. When I look back, I always think, "How could I not see that coming?" Life is so busy, so stressful, and it's summer and hot (15 days in a row so far in the 90s in Denver). So when I look back I see me trying to compete with the heat. I see me getting my daughter going to Kindergarten and the stress in that itself, but also in the change of schedule and the energy it has demanded. I see that my cat got very sick and I've been taking her to the vet--now giving her fluids under the skin and watching to see how she does. And then I see work--a new job which is nice. But there is, it seems, always one bad egg. This time it's someone who feels they are teaching me because they think they are the expert. And then I come back to the heat. I was taking naps, one long one, then I went on a bikeride in the heat which killed me, then I kept pushing, so from Sunday to Thursday things went down--loading and unloading the wheelchair again and again in the mid-90s was a bear! Over the weekend, with steroids, things improved. I went to the mountains. I didn't go to church--too hot. I took care of my kitty. I hung out with my husband and daughter (the best part). And today I take a break from work to ease back into things.

I think we, as society, rush around too much. I think, though I haven't been given any official word, that God wants us to stop for a moment, probably many moments, and breathe. I think each time this happens to me, that maybe the next time I won't let everything build--that I will see this all coming. For now, I focus on getting better, letting go especially of the work stuff, welcoming calm and being with my family.

Please God, help me to see this all more clearly next time.

My Faith Journey

It was “meet the pastor” day last December (2007)—I guess that’s what it could be called. The new pastor of our church wanted to know about me, and then asked me about my faith journey. Faith journey. That threw me. Maybe it was because it was in the middle of a hard time for me, and I wasn’t myself at all. I was starting to come out of this strange depression cloud, and couldn’t think of some big journey, as just getting through each day seemed incredibly difficult. Now that the cloud has lifted, I’ve had time to think more about this, and wanted to write it down. Here goes…

I honestly don’t know where my faith journey began, and it’s a journey, so it continues. I truly believe that faith is caught and not taught. Otherwise, how much sense does it make that my brothers and I were all raised very similarly, but I’ve had pretty deep faith since high school, my “big” brother is an atheist (currently), and my “little” brother married a Catholic and seems to somehow have developed faith that way? I don’t know if any of it had to do with my grandfather being a minister, baptizing me, passing away when I was only 6 months old, and this being in the back of my mind, always. We grew up switching churches (Episcopal) fairly often, switching apparently to determine the “politics” behind any given church, traveling far distances to attend church, and not going really regularly.

I remember some kind of faith of mine being “caught” in middle or high school, when we attended church in Denver. I decided I wanted to be confirmed, and I don’t really know why, except that we actually went to church more often and I was in a Sunday school class where we walked through Genesis, were given info on other religions, and had an actual sleepover! Yes, that’s what I wanted—a community—all my Catholic friends seemed to have it, and for a brief period of time I did as well. I loved that—I wanted to be involved, without the “politics.” My high school English teacher remarked at some point that I was pretty religious, and I remember being religious on my own, without the community aspect, because my brief “community” in Denver ended. What it meant to me was an overall feeling that this was right.

I chose to go to Kenyon College, which holds ties to the Episcopal church but whose student body is not religious—I was one of very few who attended church. That’s when I began to listen to sermons, and what they might mean. I had never felt the presence of God until I was diagnosed with MS. Then I chose to go talk to my pastor about the why. We talked about the existence of evil in the world, and then prayed with the church secretary. For the first time there I distinctly remember feeling the presence of God, holding me, there. For me that was powerful, and I’ve never felt anything like it. My faith continued to build through college, because by that experience, I listened more and participated in the very small religious community at Kenyon more.

After college, I moved to Minnesota, but my faith wasn’t as strong then, or maybe just wasn’t as much a part of who I was. When I returned to Colorado in 1998, I started searching for a church where my faith might grow, where there was a community of which I could be a part. I kept coming back to Holy Love. There I found sermons that had meaning to me, and the sense of community I wanted. There have been other parts of my faith journey—where God seemed to give me direction—when I got to become a mom instead of participating in a risky clinical trial. There are other times I have wanted direction from God, but maybe needed to consider that choices are mine and I need to instead know that God supports me. And there are times when I’ve hit rock bottom, and God picks me up, dusts me off, and lets me keep going on my way. To this end, most recently after an MS exacerbation, I got flung suddenly into a severe depression. In the midst of this I went to church and found the sense of calm l needed—the feeling that someone was kneeling in the corner helping me to realize I needed help or I would hurt myself. And I did get that help.

That takes me back to where this writing started. And so, my faith journey continues…as it does for so many others.

Thanks be to God.

How Can I Keep from Singing?

I'm just borrowing this from Pastor Joe's website. Awesome song, and there's a great Enya version of it:

www.youtube.com/watch?v=jFlrwgYN4f0

My life goes on in endless song
Above earth's lamentations,
I hear the real, though far-off hymn
That hails a new creation.

Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?

While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
Songs in the night it giveth.

No storm can shake my inmost calm,
While to that rock I'm clinging.
Since love is lord of heaven and earth
How can I keep from singing?

When tyrants tremble in their fear
And hear their death knell ringing,
When friends rejoice both far and near
How can I keep from singing?

In prison cell and dungeon vile
Our thoughts to them are winging,
When friends by shame are undefiled
How can I keep from singing?

The Ones I Love

It has been a really exciting and trying week--one of those weeks when I wonder how all the good can be so mixed with all the bad.

My 5 year old daughter, Lori, started Kindergarten this week. It was so exciting for her--everything is new and exciting. She seems to have a great teacher. It's hard to get out of a 5 year old what they learned or did all day, but little pieces come out gradually--games she played that sahe loved, silly things they did. She loves wearing a dress every day--I wonder if she equates it with me going to work--like her little world of Kindergarten work. I love my little "Kindie" so much.

And then, on the flip side, there is my cat, Boo Boo. I love her so much--she is my first cat of my own. Last summer, she had an acute episode of kidney failure. A few days ago, she had another episode. It seems, in a way, like cat kidney MS. Exacerbations, incomplete recoveries--the drill. I want her back the way she was though I know she probably won't be. Much like MS--it makes me wonder what people think or hope of me. She is at the vet until Fri. I saw her today--she didn't look too happy--at least she is not in pain. Or could people mostly say that about my MS? In any case, I just don't think it's fair. And MS is unfair.

And then the MS interaction--actually going to see Boo Boo makes my legs go--must be endorphins.

So much happiness, so much sadness--is there hope? God, please help me to find that hope.

Rainbows

Tonight I went on a handcycle ride. I got out in the driveway and it started to rain. Then I looked at the clouds nearby and thought, no, they will produce lightning. So I headed home. Upon my return, my husband was not impressed and told me, " You got to live a little." So out again I went, certain that lightning would appear at some point and finally get me. One of my paranoias--I'm certain that lightning is after me! :) Well, it was a gorgeous ride--perfect weather in the 60s (unusual for Colorado at this time of year), and along the way I saw 4 rainbows in the distance. The last one was as I was headed home. It gradually disappeared leaving a stunning array of pink clouds. Thank God for rainbows!

On another topic, it was my first ride since my biking in the mountains. Either in my head or in reality, I was exhausted for a week. I was tired, wanting to sleep, and my arms, though not sore, hurt when I used them. But I am back this week!

Handcycling in the mountains was awesome! I achieved my goal of making it to a place called
Montezuma, at 10,000, from Keystone, at 9,000 feet. It's my theory I only did this because I told a few people it was my goal. It was so great to reach that point. I remember thinking I was .2 miles away when someone came to encourage me and tell me I had .4 miles left. That seemed like an eternity. The best, besides making it, was going down, full speed.

And so that's it for now. Kind of a boring entry. But I do love rainbows!

Needing

Today I was somewhere where specialty medications were being discussed--those injectables and infusion therapies used for MS and other diseases--the one that slow the course of the disease. These medications now cost more for patients--financial aid is available, but middle class Americans mostly don't fit the criteria and must pay. The comment was made that the patients that "need" these medications will get funding, or will "have to" pay. The comments made were that the issue has somehow phased down and is no longer a hot topic. But it is! Many people are going without medication which begged the question where it is needed.

So now I know people who are one these medicines and have chosen to stop taken them.

So what is need? People with MS NEED these medicines in the longer scheme to have greater quality of life! Why don't insurance get it? Need does not equal strict cost effectiveness. No, people don't need them to survive, but they do need them to live fuller and longer lives.

Goodnight!

Beth

The big hit of depression

There are so many topics I want to cover in this little world of mine--my blog. Perhaps one that keeps coming to me is depression. It amazes me that society largely pokes fun at this, or ignores it, when it is so serious. So here I will put my story and my thoughts.

Back in November '07, I had an MS exacerbation which was treated, as usual, with oral steroids. In the past this treatment, though causing somewhat of an emotional roller coaster, gave me a time of uplifting--a brief period of time when my MS improved and I was inclined to clean the entire house.

But this time was different. Yes, I felt physically stronger. But rather than wanting to clean the house, I wanted to read my book. Then when I was done with the steroids, something else happened. I went into a downward emotional spiral. No one knew this but me, because I was being such a great actress. In fact, others probably thought I was happier than ever. When not around people I would cry--everywhere--to and from work--everywhere. I couldn't eat--looking at a plate of food was just not appealing. And each day seemed so very long; I wondered how I would make it through each one. And I wondered when this would end because it was linked to the steroids. It didn't end--it kept going.

Finally after a miserable day of skiing where I seemed like the happiest person on the planet to everyone around me, I went back to the hotel room alone, and cried, and cried, and cried. I wondered what I would say if Pastor Jim asked me "How are you?" I knew I was not well--I finally called my younger brother for advise. He said to call my doctor first thing on Monday. My doctor and I talked on Thursday.

Of course, I went on anti-depressants. They took awhile to work. I remember after 2 days on them, I pulled into my garage and thought maybe I should just end everything, but then reconsidered, thinking I'd give this medicine a few more days. And it did work. I did feel better. I then went through a period of feeling fragile and that ended. It was the medicine, but it was also church. I went to church A LOT. At church I felt at peace, like something was holding me like a baby. I also had wonderful family and friends--once people knew what was happening, they were so helpful. My mentor asked what I was doing for me--I couldn't answer that question. So I sought help. During this time, my pastor came to meet me. I wonder what he thought. I was just starting to get better. I was very much out of reality when we met. He wanted to hear about my faith journey. What? All I knew at that point was that God was holding me at church. Maybe another time I'll write on my faith journey. I do wonder what he thought of me then, when I felt lost and helpless in a way, and he couldn't help.

So, to end this posting, as I said, I did get better. And then there are times, often, when I forget to take my medicine. And then the depression comes back and hits me a bit. And then I wonder why I have to rely on these pills to feel like myself. Today I'm on them--3 days in a row. I was struggling before that. I struggle a bit now. It's a bad MS day and even on the medication, I may cry. But I know that I'm getting better again--that this recovery is from something far less severe than the initial hit. And I cannot wait to be happy most of the time again.

God, please bring that sense of happiness back to my life in a more consistent manner.

Merging of "clubs"

It was 7:20 pm, too late to start on a real bikeride, or given that it was me, was it too late? Off I went. My thought was that, if I really could find some way to go faster on the uphill parts, I could cut the 90 minute ride and make it home before dark! In Parker, it seems I go either all uphill or downhill for half the ride, and then the reverse for the second half. So this ride started with the uphill part. I'm digressing from the whole point of this writing.

Throughout this ride, "worlds" that have been an integral part of my life came and went, merging at times so the "clubs/teams" where I've belonged were all there. So, starting in high school (and I was thinking that while I was riding, there were some summer intervals taking place at Edora Park in "Ft. Fun" ie Ft. Collins), going up hill after hill was like the intervals I did so long ago at Edora Park, so I was feeling a part of that interval club again, with Coach Luckasen pushing us by saying "someone has to win" and Coach Martin on the flat parts yelling calmly "Maintain." Shifting to college, one hill clearly reminded me of the "YBF" (your best friend) hill at Kenyon--I looked up and thought "what was I thinking about going fast up all these hills?" Going downhill, I was actually thinking I could have "toasted" Coach Gomez, or at least maybe cut him off or something. And then there's Charlie the ski coach, who never has gone, for me, by the name "Coach," but he is one, and in doing this ride, I thought of him telling me last year I needed to come to the handcycle festival. I did--I made it .75 mles from the end of an uphill ride (further than I ever expected), but the festival is coming again and this time I want to make it the whole way--only about 3 weeks of training left!

So although I was alone, all these worlds were merging at different points along with the people who were part of the worlds. There was a feeling of the "clubs" coming together, and that my athletic mindset will never be gone, and therefore, nor will those worlds. Of course, that athletic mindset may not be the smartest thing, but I broke a sweat and got out of breath and that hasn't been possible for me with MS for a long time. And being that the athletic mindset for me yields this competitive factor of me against the clock, I did make it back before dark--the 90 minute ride was shortened to 65 minutes. Umm...I was probably too competitive on the downhill parts and was hoping not to splat all over the road and land in the hospital.

And where does faith fit into all of this? I think God was there for all of this--at what level, I do not know. It may be that God knew this ride was a bit unsafe at dusk and somehow, I was kept safe during it. Maybe it was in the merging of worlds. I don't think I'll know the answer to that one, except that God was there.

Child of God

"And Jesus got up and followed him, with his disciples. Then suddenly a woman who had been suffering from hemorrahages for 12 years came up behind him and touched the fringe of his cloak, for she said to herself, If I touch his cloak, I will be made well. Jesus turned, and seeing her he said, 'Take heart daughter; your faith has made you well.' And instantly the woman was made well." (Matthew 9:20-22)

This was the gospel reading for today. The sermon that went along with it was intriguing and made me think of my life, where I'm most comfortable, where I belong, and where I always belong, as a child of God. But back to where we belong--so where we are most comfortable. Of course, these days I feel most comfortable among people with disabilities, but a subset of those--those who are interested in athletics, upbeat, and like to have fun. The handcycling festival in the mountains is coming up and I am so excited about that--to see all my buddies again, be athletically challenged, laugh, and overall, have fun. And then there's the group where I guess I should feel like I belong but I don't; and that group would be the MS group. I'm a part of that group because I have MS; I don't really fit that group because my MS is so different. Study after study comes that just doesn't seem to fit me, and then I tend to get frustrated. But maybe I want to be my own MS club. Regardless of all the places where I feel most comfortable; most comfortable among those people where I feel I belong, there is a fact. As a child of God, I know that God cares for me, so even if I am somewhere different, not feeling that I belong, God will always care for me. This reading then seems less about Jesus healing the sick, then about being a child of God.

Peace.

What pain?

This is a somewhat interesting time for me. I was having some trouble with my legs excessively jumping at night, and then feeling very achy the next morning. And every time I would get up, my legs wiuld just shake--that is called clonus. I called my doc and he put me on a strange taper dose of steroids, because I told him this did feel like a flare, kind of, but not completely.

Steroids are just odd and make me think what kind of pain do I want? On steroids, nothing really tastes good; I get constant esophagus burning and use milk for that; emotions are right on the surface. So there's those "steroid pains." But the steroids take other pains away. No more legs jumping at night (of course, steroids also make me wake up at night), no more achy legs, not as much clonus. Whenever I am on steroids I wake up in the morning, lie there, and think "Huh, so this is what it is like for other people." My legs are calm--they aren't jumping and they don't hurt.

I'm only on these steroids for a brief time--well, actually 2 weeks because the dosage is lower. But it makes me think of which pains and annoyances are more important. Hopefully this round of medicine will make some of these symptoms go away.

Time for bed!

The Power of Prayer

Because I have a disablity, people often make strange comments. A lot of people come and tell me they are praying for me, even though they don't know me. I wish this randomness really meant something--maybe it does for those people. I always think sarcastically, "Yeah, you keep praying...whatever!" So here are 3 examples:

1) Today I went on a handcycle ride. I go seemingly up, up, up, and then I get to ZOOM home at the end. So I was at this level point, almost at the end. This guy came running across the street--he was probably 17 years old or so. And he asked what happened to my legs/why I was using the handcycle. Can't I just ride my bike??? Well, I certainly wasn't going to dive into my whole MS thing, and he didn't want to offer me some kind of alternative medicine cure. Instead, he wanted to pray over my legs. He went on for some time praying and then told me that I must have faith, and try something with my legs that I hadn't tried, later today. OK, I tried something--they still don't work. Thanks for praying though!

2) A nice guy at work told me he gets up really early to pray for everyone with whom he works. Then he added "and I pray for you too, Beth. I'm gonna see what happens with that." OK, yeah, let's see what happens.

3) Going into Starbucks one day there was a group of people and one guy informed me "we're going to be praying for you." OK, you go ahead and do that!

Random prayers, random times, maybe I should start some kind of random thing!

God, please help these random people praying for me to get fulfillment for doing so.

MS Walk Thanks: Hope will not disappoint us

It was Friday, the day before the MS Walk, and I was headed to my car after work. The wind was forceful that afternoon, so much so that it grabbed my notebook, flung it into the parking lot, and dislodged a Post-It note (I live by those things) with a set of important directions I needed. I grabbed the notebook, and struggled to reach the critical pink Post-It note. Suddenly, a new friend, Willy, appeared. He grabbed the note, handed it to me, smiled, and paused (yes, mid-windstorm, one can pause!). Then he said, "Somethin special is gonna happen to you real soon, Miss Beth." Many special things happen to me, and the following day’s MS Walk this year was one of those things. Why?

It took me Sunday afternoon to pause and digest Saturday's MS Walk. MS is a tough disease--some people at the Walk have clear, familiar, visible symptoms; many people at the Walk struggle with invisible MS symptoms; so many people are impacted in so many ways; there is always a sense of unfairness. But the Walk was fantastic. The "May You Dance" team grew this year. On our team, two of us have MS. The growth of our team was exciting; to roll with our team was exhilarating; to see all the people at the Walk showing support to those who have MS was encouraging. There was a sense of excitement; a sense of hope. There is hope that all the money raised will provide assistance to those who live with MS, and money for research toward a cure.

Sunday afternoon I went on a bikeride (handcycle--I ride using my arms)--my unique way of pausing to reflect. I climbed hill after hill, finding all the thoughts expressed above (unfairness, support, excitement), climbing, climbing, knowing the cure for MS probably won't occur in my lifetime, but wanting a world someday that does not include MS. And then I reached the top of all the hills, and knew the whole way home was downhill. I could let go! And when I let go I felt hope, and a profound sense of thanks--to all who donated and all who help those of us with MS who struggle daily. So although thanks is not enough, thanks for your support of the MS Walk. Your support gives hope to so many who live with MS, and hope will not disappoint us.

~Beth Newsom and team "May You Dance"

Passing on the faith

Boo Boo, my cat, just settled in, as if to tell me it's time to write a new blog. But on what? Well, I'll go back a week or so.

I decided to go to a religious conference ("Passing on the faith) sponsored, in part, by our church. I took Friday off of work to do this. So I went and the strange thing is that I felt like "the person in the wheelchair" there. People never know how to react to the wheelchair. These people do not have bad intentions. On lady said "are you going to be in that thing FOREVER?" ok...and hello to you too. Then another woman said, "It's SO great that you can be here today," with the tone that somehow I barely got out of bed and made it. A bunch of little stuff. Then there was this piano teacher I knew from my days playing the piano. She was always at the competitions and was always a calming force for me, even though she wasn't my teacher. I saw her at the conference and exclaimed "Hi!" But she didn't remember me. She probably wouldn't have remembered me even without the wheelchair. But that just amplified things. She knew me as the pianist, out of the wheelchair. In the wheelchair, she didn't know how to react to me.

So there I sat, thinking I didn't want to be there; I wanted to be home with my daughter; I wanted to be out riding my handcycle in the spring air. And so I left. I went home to my daughter. After a bit of time I went and rode my handcycle. And there I was--out in nature. God was there--I could feel that presence. That was where I was supposed to be.

God, guide me to where I can feel your presence.

Prayer

God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

It has been somewhat of a strange, hard, frustrating, yet exciting time for me. I called for the second (!) time to get the results of the MRIs of my back. The nurse read me the results. My MS is located where it has always been, almost as if nothing has changed since I was diagnosed, except that so much has changed. There ae no active lesions; there are no new lesions, there are very few lesions; they are all in the T2 area. Then why do I have all these problems? I just don't get it. I guess the frustration is where it's always been--you do everything right, yet things don't go right; in fact, they go incredibly wrong.

Yet, I started a new job which is excellent.

So back to it:
God, find me now, show me the way.

Zip, Zap, Zzz...................

What an odd title! It's the only thing I can think of posting right now, but wanted to post something, because it has been quite a week! Zip, zap would be the feeling of my legs sometimes. This morning I was trying to curl my hair and my right leg was ready to go off to the races. So I would start curling and then zip, zap! There it would go, with me trying to twist the curling iron. And it's been doing that ALL week. Then the Zzz... well, while I have the alive leg ready for a marathon, the rest of me is ready for a serious nap! Tuesday I was completely exhausted; Wednesday and Friday I had thoughts of getting to work early. Ha! I didn't want to get out of bed. Once out, there was that whole right leg thing. And then my right hand had the numb thing. BUT, since I didn't actually fall, and since I was able to sleep a lot Friday night, I think I (knock on wood), may have kicked this thing, because it's too soon for an attack!

I bet this is a stress reaction--too many things going too fast--getting ready to switch jobs, school, typical mom guilt, functions to go to and arrange. Aarrgghh! So it's calming time--giving myself tonight to read a nonstress book and relax; tomorrow to go to church where I feel this sense of calm during the service...breathe...

Thanks to God for pulling me through this week (with me kicking and screaming).

Snowflakes from Heaven

Thia past Monday was the last day of the ski season for me...sigh. It started off horribly--nothing "clicked" in the morning. We took an early lunch. The afternoon was totally different. Everything "clicked," in the midst of this beautiful spring snowstorm. At the beginning of the year, I set a goal to make it down a blue slope, without being tethered. But it didn't seem like it was going to happen because I would see the slope and "psych" myself out about it. But then there was the beautiful snowstorm--I couldn't see the steeper slope so I kept going. And I did fall, but I made it down the blue slope, the whole thing, off tether. I set these goals I think I will never reach but yet I keep working at them. And this one happened.

Thanks be to God.

Teaching Lori how to ride a bike from my wheelchair

Today I picked up my 5 year old daughter, Lori, from daycare. We went home, and I was reading some mail in the car when she pulled out her new bike. Now, this would be challenging any day, but today it was 45 degrees, 5:30 pm, and cloudy. Well, off we go, after I assembled the wheelchair. Thank goodness the neighbors came along with their dog to help her walk her bike down our hill. So, at the bottom of the hill, she started to ride. She's little--her legs barely reach the pedals. And it was slightly uphill. So I would go behind her and give her occasional "bumps." And of course, I was somewhat flipped out by this whole thing--what if she fell, what if she rode into the road, etc.

We got partway around the next cul de sac and all of a sudden, she announced "I'm cold!" Translation: "I'm done." She got off the bike and really was done! I have no idea how she thought the bike was going to get home, but it certainly wasn't with her pushing it! So I actually tried to put this bike with training wheels on my lap! Of course that didn't work so she had to "push" it. The problem was that now we were headed downhill and she didn't understand how to slow or stop the bike. She would run along side it until the bike went off the sidewalk at which point she would have a complete meltdown until I got there and lifted the bike back up on the sidewalk. Whimpering the whole way, we got home! She put her bike in the garage which must have been ordeal because I heard her screaming at the bike (I was a bit behind). I took her on my lap, hugged her, and told her to go inside and get warm.

Of course, she is now over this and happily in bed. I'm still thinking about the whole ordeal. I don't think we'll try that scenerio again!

He is risen

Happy Easter! This is the day that the Lord rose, for us and our sins. We should rejoice and be glad in it. I am--it was a good day in that it was with family and of course at church.

Switching gears though, it's been a tough last couple of days, where my legs and jumping and very stiff. I keep thinking, "Come on!" And it is too early for another attack--it is only about 4 months since the last one. Yesterday I was getting out of the shower and had a leg spasm, so turned around and was in a weird position. So I did one of those controlled falls--I try to stubbornly avoid those. Then more spasms as I was putting on make-up. "Ouch! Come on!" Then today--Easter--church--more spasms. Where's the Baclofen? In the car, of course! I got up to read the lessons, had a stance, and my left leg starts doing some kind of dance--fast-paced and annoying. So I moved it around to stop it as reading the lessons is not a track race!

Now my parents are gone, my brother and his family are gone, my daughter is in bed, and my husband is in the basement. And here I am--brooding about these legs which at this moment are, thankfully, calm. Thanks be to God for that.

Keeping the faith...

I don't know why I titled this one in this way--it's some random thoughts. Holy Week is coming. I'm feeling a need to pause (don't know how!), but I'd really like to go read this awesome book my pastor leant me which is helping me. And I feel most at peace when, before services at church, we take a few moments to pause and get ready to worship. I love that pause--it is when I most pause, relax, and just let myself be.

This past week has in a sense been difficult--faced with the unknown--do I have MS or not--it's like re-living right before I was diagnosed the first time. I consider how I will feel I am diagnosed with something else. Alternativelty, I consider how I will feel if the diagnosis comes back again as MS. In any case, I think maybe it will be a WHAM! feeling. And hopefully then I will have time to pause and reflect.

Today my daughter wanted to take the dog for a walk we did. Her hair flew behind her--long and so beautiful. Those times with her--watching her run, hearing her giggle, are so precious.

God, help me through these next 2 weeks and help me to find the time to pause and reflect.

15 plus years of MS, or is it something else?

I had an appt with a neurologist last week where he pulled up the baseline MRI I had taken recently, needed to start Tysabri. I told him I didn't want to know what it said and then he paused and said, "OK, but it's completely normal. There are no lesions there." I was excited! That meant it hadn't gone from my spine up! But then he said that after 15 years there should be _some_ type of lesion in my brain. So now more tests because do I really have MS or something that is closely related, and limited more to the spine? Lovely. Not. This all makes me pause and think, and feel really puzzled.

Hmm...please God, help me to hang on through this most recent "curve ball." I think I should write a book called "Curve Ball." That would be the story of my life!

Racing through the snow to get an award...

OK, so I'm really awaiting the final election returns tonight...

In the meantime, I went skiing this weekend and it was so fun! Thur, Fri, and Sat. Then Sat night I went to an awards ceremony where a miracle happened and I won an award! It was the Diversity award for Kaiser Permanente, which I won for the disability stuff I love to do. And I had to give a brief speech which went something like:

When I was diagnosed with MS over 15 years ago, I felt totally helpless, isolated, and alone. But through the years people have found me and helped me to realize I can still be the athlete I once was, and the person who I was when I was diagnosed with MS. Diversity has done this to me. It is my hope that moving forward I can reach other people who have diseases or disabilities and feel alone, and get them to see the togetherness that diversity can bring to them.

Whew--cheesy but from the heart.

After skiing and that, I woke up to snow Sunday morning and decided that instead of going to church, perhaps God wanted me to take a day to rest. I was sore, even more sore Monday, and today, Tuesday, still somewhat sore and still tired. But it's a good sore and I had a great time.

Hitting the Slopes

We're off to hit the slopes at Breckenridge. Our whole family will go (hubbie and daughter), plus my brother, his wife, and their 2 little kids. I hope this will be fun! I wish I could do the blue slope off tether--it's a mental thing--can't get over it. This week I had my eyes dilated--passed with flying colors. Next week I have 2 dr appts and then I have to make...........the Tysabri decision. But this weekend is all about fun! :)

Where?

I've been thinking--dangerous! :)

Way before my daughter was born, my MS was out of control. At that time I looked into getting a stem cell transplant and was really close to getting one. At the same time, I always wanted a child and knew having a stem cell transplant would probably make that impossible. So strange as it may be, we were trying to get pregnant while this stem cell transplant possibility was moving forward. In June of 2002, my grandma died at age 99. Around that same time I got pregnant, finding out right after her memorial in July. My daughter was born 3 days shy of what would have been my grandma's 100th birthday. So there was the answer--no stem cell transplant, because I got the greatest gift of all--a child.

My daughter just turned 5 this past week--time flies! Now I would never consider a transplant because of the risk, because now I have my daughter, and somehow I viewed getting pregnant as a sign from God on what to do. Down the Tysabri path I went, with all signs pointing toward this is the thing to do, until the small melanoma article. And it may be coincidental, and rare, and all that, and I wonder is this some kind of sign for me. But really what I wonder is, where is God right now. I can read all about how God is there as people struggle, and I believe that and maybe should view this as a struggle. But part of me is saying, "Hey wait God, I thought we had a deal--you provide the signs--is this a sign, or is this you telling me to make the choice alone?" God doesn't want us to be alone. God is so many places for me. But where is God here?

Faith, Hope, Love, and what the heck does this mean?

Here I've been, waiting to start Tysabri, watching that there are no new cases of PML, watching, waiting, hoping, seeming to get indications from God that this is the way to go. I have a new bracelet that says faith, hope, love. I now wear that all the time. The evening I got it--I came home and got on the MS website homepage. And there it was--after all these positive signs--2 people on Tysabri now diagnosed with an agressive form of melanoma. What the heck am I supposed to do now? Were all these "signs" really nothing? What the heck am I supposed to do. Let's see...I can go on the drug and have something like that and die in a few months--lovely. I can go on it and have it slow down my MS, or even make things better. Or maybe in a few years I can "look forward" to possibly getting PSL. What kind of choices are those? I guess I'm feeling pretty angry now. What direction should I go? Does it even matter? I didn't want an attack like the last one, or the depression that followed. That was horrible. But now I'm left with some kind of "stellar" choice--with nowhere to look for guidance, which I thought I had. I thought it all made sense. Now everything seems turned upside down.

It keeps going and going and going...

One day I hope to have a Tysabri infusion! Today my doc called me and told me about forms I need to fill out. Then I had to call the annoying nurse in neurology who will send them to me. I asked her if Kaiser patients had been on Tysabri and how they had done and decided she was clueless and maybe I should give her some blog addresses to check out. Whatever, but I should get the forms and information to read. I felt like telling her that I've read all the information I need! But I guess things are getting closer. Tonight I went to a jewelry event for a neighbor. I found this bracelet which says Faith Hope Love. I love it. I'm just going to wear it all the time.

Things that make you go hmmm........

Saturday I had my MRI--yippee. 30 minutes of listening to click-click, clack, pause..., bmmmmmmmmmm.........repeat for 30 minutes. My cool doc called and left a message today--he is called Count--to say he hasn't forgotten about me, that he has communicated with the neurologist (note--I don't like neurologists!), and that it sounds like all that is needed is for me to join a registry. But whether I need to talk to this other neuro doc is kind of unclear. And of course I deleted the message, which contained a long explanation--oops! So I was digesting all of this before the start of a meeting when someone asked me, "So, are you ready for tonight?" Huh? Oh, that's right, it's Super Tuesday (and also Fat Tuesday but I don't feel like making pancakes!) and I'm 'a precinct leader and all that. So today has gone like this--hour commute due to snow to meet with my leadership mentor on being a better leader (legs do not bend in the snow!), go pick up final caucus packet, get message from doc, go to meeting, facilitate another meeting, pause, write this post. Wow--I think that's enough for 1 day!

Things I Love

I read a couple blogs about this, so I thought I'd make a brief list of the things I love.

- Family
- Friends
- People who care
- Being with these people
- Having faith in God and Jesus
- Being stubborn--it keeps me going
- Doing anything outside--especially skiing and handcycling
- Singing hymns in church
- Hope

Born to set thy people free...

I enter this week waiting for news on going on Tysabri. There's an excitement in the air, and also a fear. This Saturday I have my MRI. So I'm thinking it would interesting to start this on Valentine's Day or something. Feb is such a strange month for me--the month I was diagnosed with MS (Feb 11--15 years!), the month my kitty was born and then died, the month my grandma was born, and the month my daughter was born. This year for Feb 11 I'm going skiing and why not follow it up with an infusion? :)

Anyway, the title of this post...I keep thinking God will give me an answer on whether my decision is right or a sense of whether or not I will be ok. Randomly in my head, after Christmas, this Advent hymn popped into my head and I could only recall the first 2 lines. I have not heard the hymn since I was a teenager.

"Come thou long expected Jesus, born to set thy people free."

What's the next line? I kept wondering why this popped into my head. Finally I looked up the next line:

"From thy fears and sins release us, let us find our rest in thee."

Beautiful. I think Jesus will hold my hand through this all, at least I hope so. Otherwise the hymn popping into my head makes no sense.

The Answer is Yes

Today I saw my rehab med doc. Just as I envisioned, he was saying how I had this attack in Nov, and I had one the previous Nov, and one in between the two, and I said, "Yes, and I've decided I'd like to go on Tysabri." So he kicked back his chair, put his hand on chin in thinking mode, but didn't remove his glasses like he usually does. He said, "You are a young woman, and I think that would be a good thing for you." And then we discussed how long it's been out since it was taken off the market, and next steps. I need an MRI. I haven't had one since I was diagnosed which surprises everyone. Back then there was nothing in my brain and it was all in my spine. I told him I don't want to know the results of the brain MRI, because if there are lesions there, I will question my ability to think, go to school, do my job, etc. He said that's fine. And then I can start--he said, the sooner the better. And what does that make me think? I think there is hope there, but there is also fear of having a reaction to the infusion and knowing that then this therapy wouldn't be for me. Hope and fear--a strange and somehow powerful combination I am taking with me seemingly with almost every breath I take.

All things bright and beautiful

My daughter and I were driving yesterday to her dance class (she's almost 5) when she asked "Mommy, how do birds know when to come out of their eggs?" These questions lately are challenging! So I diverted a bit and we started talking about when she was ready to come out of Mommy. That seemed easy enough--when the baby has all hands and fingers, nose, ear, mouth, etc. And then we discussed how the baby comes out, but in a comical way which left her giggling. She woke Mommy up with a poke that hurt. Mommy then had to wake up Daddy. Daddy didn't want to wake up. Then Mommy hurt and wanted Daddy to drive faster to the hospital. At the hospital, no one but Mommy was in any kind of hurry. Then when Lori (my daughter) decided she was really ready, the nurse told the grandmas to "Get out!" of the room. Lori thought that was hilarious. The grandmas waited in the hall instead of the room where they were supposed to be. More giggles. Mommy pushed and Lori decided she wanted to stay inside for awhile longer, so the doctor helped a bit and pop! Lori was out. And then everyone came to see new baby Lori.

It has been awhile since I thought of that time, a time that was, in its own way, so beautiful. All things bright and beautiful, all creatures great and small, all things wise and wonderful, the Lord God made them all. Thank you God, for the gift of Lori.

The next exciting Tysabri step after a long day

The day started as a rough one. I had been missing my Paxil for 2 days and found it this morning, took it, and wondered why taking steroids made me reliant on this pill to feel like myself. My 4 year old daughter didn't like any of her clothes, and I didn't have the energy for that. I got to work and all the accessible spots, even the one with my name on it, were taken, so I parked so far away. I was feeling done before the workday began, and found myself in the bathroom at work, back to crying since I missed my medicine for 2 days, wondering how I was going to make it through the day of meetings, the responsibility, the showing the new person what to do, the no time for myself. I wanted to leave then and go somewhere and be by myself. Instead, I did stay. I made it through the workday. I was a good actress again.

I then went to a lecture on new MS medications. I sat through all the discussion which included the fact that doctors shouldn't have to discuss how a patient will pay for a medicine, even when the patient is insured, and then some patients can't afford these therapies that can help them.

Afterward I went to ask the dr my question which is on the possible reaction to Tysabri and if the reaction is treatable. And yes the reaction is treatable! The dr sat, listened to me, really listened, and told me the answer, and gave me hope.

Next step: dr appt, Jan 22.

Thank you God, for getting me through this day. Thank you for letting this hope I heard today guide me. Please make tomorrow easier.

God's presence and life on the ski slopes!

It's been an eventful couple of days!

Today was an exciting day because I went skiing! I bi-ski up at Breckenridge in Colorado, and last year, maybe the year before, became a ski addict. I love it! Today I went off tether for the first time ever on a blue slope, and of course it didn't go so well, but I tried it! So that's step one.

Yesterday I went to church and our pastor gave a sermon and asked us to think of the strangest place where we had felt the presence of God. So I really haven't felt the presence of God in surprising places. When I was diagnosed with MS and went to talk with my then pastor, that was the first time I really felt the presence of God. There have been other times too--at home, most recently at a funeral. But then I got to wondering, where is God sometimes? I'm thinking wouldn't it be great to feel that presence on the ski-slopes? Or when I'm making an important decision? In a sense I know God is there because some things happen in life that make no sense elsewise, or there's a decision that just "feels" right. I read in a book that sometimes people who really suffer, and I put myself in that group because MS is really, really hard, every day, are the ones with the strongest faith, and I do feel that my faith is strong.

When I went skiing I was staying in a motel, and of course it was snowing when I arrived and I had to get my wheelchair from the back of my car and assemble it. And of course all these ski types walked by and didn't offer to help. I think I need a sign--"I'm about to fall down and will you notice when I'm lying on the ground?" That's because when it's sunny, when I feel good, there are all these offers for help. But during the Christmas season, or when it snows, so many people just walk by me when I'm obviously struggling. And some lady stood there yesterday just watching me while waiting for her husband. So in all the snow and slush, somehow I managed to assemble and sit in the wheelchair without biffing it. Then I wheeled up and the woman who had been staring at me--her husband had now pulled up his car, blocking the ramp to the motel. So I wheeled over and just sat there, looking at them. And he said, "Oh, am I blocking your way?" I dunno--look around--what do you think??? So then he was very nice and helped me into the hotel and then some other guy helped me get all my stuff into the hotel.

So my point? There are these clueless people out there who say the silliest things and maybe where is God then? Well, humans are not perfect and nor is life, but I am thankful I got the opportunity to go to the mountains, to go skiing, to be with all my ski buddies up there.

Thank you, God, for allowing me these opportunities, and for being with me even when I cannot feel your presence.

What is right, what is fair?

I feel so fortunate. In this decision of mine (I think I've made the decision, now just to go through the channels) to go on the drug Tysabri, I'll have to pay 20%. That's quite the copay! But I am fortunate in that I will have private help to pay this 20%. Insurance companies are moving toward this 20% requirement, if not already there, for injectable and infusion drugs. These drugs aren't just for MS--they are for other chronic diseases as well as cancer. And no worries--if they become available in pill form, there's a way to ID them so the 20% won't go away. So what happens? When insurance changes, people go off the medicines, which is scary because their disease could, and probably will, "kick up" again. People who are newly diagnosed won't go on the medications as they will be too expensive. People with MS are typically diagnosed between ages 20 and 40--you think this age group has $250-$500 per month extra income? I think not. And then if people aren't on the medicines, where's the incentive to develop new medicines? There already is a struggle to develop new medicines for MS--to get studies from the lab to the market, due in a large part to the "low" prevalence of MS (as compared with say, diabetes). And now, with this, what will happen? Is this right? Is this fair? Hmm... someone want to live my life for a day and let me know? And I work for one of these lovely health care companies and was asked today to give my thoughts on "affordability." OK--that's a strategic inititative as well as quality. Wow. Not sure of what I'll say!



God, please help someone, somewhere, to see this issue, to get people who need medicine that medicine, to not limit them by income. At some point, please help someone to realize that these decisions are just not right, and just not fair.

Faith, Hope, Tysabri

It's 2008! Happy New Year! This posting is about me relating a Bible passage to my investigation of going on Tysabri.

I'm currently sitting at my desk at home, where I have part of Romans 5 posted. It says:

"Therefore, since we are justified by faith, we have peace with God through our Lord Jesus Christ, through whom we have obtained access to this grace in which we stand; and we boast in our hope of sharing the glory of God. And not only that, but we also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit that has been given to us."

I think of this passage often, what it means, what it means to me as an individual, particularly as an individual with MS. I believe that if I do not give up, so if "I have MS" but "MS does not have me" that then yes, suffering will produce endurance. Recently I had an exacerbation followed by an episode of depression resulting from the steroids. But I've got through that, although at a low point I wondered if I would. That resulting endurance then did enhance my character, because with each relapse, I do have thoughts that drive me forward, that keep me going, that build my character. That character then does produce hope. Maybe in this particular case of my exacerbation, it's thinking about going on Tysabri--for me that possibility is endurance and character. The endurance is thinking about Tysabri, the character is my investigation into it. I'm going to a session on infusion therapies, and will ask a lot of questions. Years ago, I would have been silent, and just listened. Lastly then, character produces hope; maybe this hope is that Tysabri could work for me, that I could be one of the lucky ones who gets tremendous benefit from it. Could this hope disappoint me? Romans says no. It could disappoint me, but maybe then I view, if Tysabri doesn't work for me, that maybe there's a learning there for someone else, and maybe somehow that is God's love shining through.

So can I look at it this way, right now, during this time? I think doing so helps me to link an eventual decision with being at peace with that decision.