Saturday, March 28, 2009

Here's to you...

This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.

A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.

So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.

This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.

The other part that came into play was a song by James Hersch, which also made me think of her. Who knows what will happen, but I thank God that she contacted me, that she brought back that memory (and others), and that she is as I remember her, one of the most beautiful people I will ever know.

Here's to you:
"The sun won't cry,
the moon won't care,
these hills are as quiet as a silent prayer.
And so I sing my song to you,
as if that's all that's left that I can do.

Here's to you, Mr. Twinkle in the eye,
Here's to you, Mr. Never let a day go by
without making someone smile, that's just what you'll do,
Here's to you."

Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!

Sunday, March 22, 2009

My second marathon

My first marathon was briefly after I was diagnosed with MS. I did it--with the help of so many friends.

Yesterday was my second "marathon." It wasn't official--it was a handcycle ride. I thought it would be 15 or so miles. Ha! I showed up and there were 4 guys with spinal cord injuries and big, buff (kidding!) little me. When we were almost at the turn-around point, the guy I was with told me coming back was slightly uphill the whole way. That could be a problem! Surprisingly, I made it though--28 miles! I don't think I've done that on a regular bike! And it was only my second time out this year.

What's a bit complexing is why I can do stuff like this sometimes, and other times am worthless. That would be the MS beast. Of course, I'm still tired today but being outside did relieve the stress, took way the headaches from the past week, and let me be with others who are more like me. I love that--being with others who are like me in some way--it takes away the disability and focuses on us all out there, at different levels, enjoying the ride (until we hit the wall). And then we all made it-so gratifying.

God here, there, and everywhere--through the good and the bad.

Thursday, March 19, 2009

Being the Christ

Lenten Wednesday night at church again this week. This week the sermon was given by someone from another church--we combine our services for a terrific turnout!

This sermon was on how we can take Christ into the world. You can take this message even if you are not religious. The example involved asking someone if they needed help, even if you don't think you can help. But besides that, the message was not to tell people they need help, but to ask.

I thought of this in my own life, but went beyond where I thought I would go. I could easily have gone the route of...people should ask me if I need help rather than just doing something like grabbing my wheelchair. But I was thinking of how I tell people that they need to know about disability, about the ADA, etc. In a sense, that is true--education is needed. In another sense I think taking a different approach may help--asking if they want help, asking if people want education. That is perhaps a better way to take my thoughts to the world.

These services are so neat. I had a migraine all day--I actually had to take 2 migraine pills for it to go away. But after it was starting to ease, we had Evening Prayer, which has a lot of singing. The service is so calming and I usually (depending on the behavior of my 6 year old), leave feeling so much more at peace. With all the stress in my life and the lives of others right now, thanks be to God for providing both that sense of peace, and the message of how best to bring Christ into the world.

Saturday, March 14, 2009

MS, Medicine, and Faith

Some who read this blog may think I rely too heavily on religion and don't utilize other things out there. This posting will quickly move down on the list, but I thought I'd post things I do medically for my MS. Religion will always be a big part of my life, but I'm analytical so I keep up with all research, have been on numerous therapies, and continue to utilize mainstream medicine, alternative medicine, athletics, and of course, religion. Note I've had MS for almost 20 years, over half my life.

The mainstream "therapies":
First the interferons. I was one of the first on Betaseron. It initially worked but then stopped working (3 years?) and it was thought I developed immunities, so the other interferons wouldn't work. That was close to when I was diagnosed. I have tried Avonex and Rebif. They, as predicted, didn't help. I was on Copaxone for 5 years. That was awesome! But after 5 years I started having trouble breathing after the injections, and then I would shake for hours. It was more than what the literature describes, so I stopped taking that. I considered taking Tysabri, but was hesitant about the risks involved. Then I had multiple MRIs showing MS is not in my brain but in 1 spot of my spinal cord. So I'm not willing to risk Tysabri if my brain is fine and I now have a 6 year old daughter who means the world to me.

Other therapies:
Over the years, I have tried various things. I've found this combo of Baclofen, Valium, and Provigil kind of works. I have bad leg cramps. Acupuncture has helped with those during the day, but not as much at night. But I truly believe in acupuncture. Also, breastfeeding--while doing that my MS improved a bit, and a recent study confirmed this is probably the case. Another therapy is exercising. I lift a ton of sets of 5 lb weights with my arms, and do balancing and stomach strengthening exercises--the routine takes at least 45 minutes.

And through all of this, religion helps. It is not "an addition" to the other things I do. It is a part of who I am and would follow me even if I didn't have MS. So I contantly will think how God helps me to get through MS, or any given situation, because I have faith. I will continue to follow all the medical research on MS, and I will continue to follow my religious beliefs. For me, it's all important. So regardless of anything MS,

Thanks be to God.

Friday, March 13, 2009

A Day in the Life...

For just someone without a disability, today might have been an adventure. Add disability, and this is how it went.

I woke up a bit late because my legs finally stopped jumping which allowed me to sleep (too late). Even though I was late, I wanted to just lie in bed because my legs were at peace and not painfully jumping. But I got up, showered (no falling) and got to work.

An hour after getting to work, I had to go to a meeting in another building (load up the wheelchair, unload the wheelchair = lots of energy). As I went down the ramp, not sure what happened exactly, but my left foot came off the foot rest, caught the sidewalk, and flip! I was on the ground, looking back at my wheelchair. I was really fine (would have been an award-winning home video though!). The security guard came running out and I got back in my wheelchair (so I could then get out of it 2 feet later to put it in my car!).

I got to the meeting--a management one--lots of fun talk about the economy, changes in the company structure, possible layoffs, keeping employees engaged. Not so much fun.

After the meeting I went to pick up a video from someone, and the someone told me how emails I send her can be personally hurtful, that I seem angry in writing them, etc. OK--before that in the day I had been told how positive I am so I'm a bit confused. Time to leave--now it's 1:15 and no lunch.

Back to the other office--unload the wheelchair, get quickly in--have about an hour to finish things, so no time for lunch (and I have no food). This gaining weight idea of my doctor seems impossible. At 2:30, after the eternal search for missing keys, I head out for more loading and unloading of the wheelchair...this is getting old. I wonder if people realize how much energy this expends.

Now I'm off to choose the showerhead and faucet for our bathroom which is being redone. After getting lost (likely to happen with no lunch and a headache developing), I got to the showroom, unload the wheelchair, and then discover I should have parked in the back of the building--that's where the ramp is. So a salesperson suggested I just load up the wheelchair and re-locate. I was done loading the wheelchair! They moved my car and I went around the building with the sales person. I chose the shower stuff.

Here I go again. Now it's' 4:15, still no lunch, and I am loading my wheelchair to pick up my daughter from school. I did pick up lunch on the way, after finding my way around a traffic jam. Luckily, she was in a good mood, and we went home and played the game Life. Life. This is life.

Not sure what to think of this day other than that I made it. Somehow I didn't faint from not eating, but I was feeling a bit spacy. Somehow my wheelchair launch was ok. And I'm left wondering if people know, in their busy days that must also be exhausting, how exhausting the addition of a wheelchair can be? And oh yes, MS does cause fatigue. Definitely. On days like this, I feel like buying myself a trophy for making it through the thing.

God is there somewhere. Maybe God got me through today.

Thursday, March 12, 2009

Finding peace in this economy

These are interesting times to say the least, with the economy. Where I work, there have been no layoffs but healthcare probably lags behind, waiting for people to drop insurance. But it is quiet at work--heads down, no talking. In my role, I'm a bit alone (kind of my own team), so the silence makes it worse. It's a real downer.

So I found myself at church, with my daughter, for the Wednesday Lenten service. During that service, I did feel a sense of peace, a sense of being connected, and I wanted to stay there afterward, and feel a sense of quiet calm. Yet everyone was hapy and talking, so we went home.

So with the silence and also stress at work (various projects, pressure from the President level), I wish I could take the time to just sit and perhaps do contemplative prayer, because I know the stress does not help my MS at all. I hope others with MS are able to do the same--not let the stress get to them.

Please God, lead me to peace and calm, and quiet the MS (lots of leg spasms at night lately). Amen.

Thursday, March 5, 2009


Last night was one of the Lenten Wednesday nights at our church. This time we had a service of healing, which I have to admit, seems like an odd concept. In my mind, way before talking with my pastor, I had images of someone in the middle of this circle, and everyone putting their hands on the person’s head and saying a prayer, akin to the hand-waving that occurs in some churches. Nothing like feeling uncomfortable! So I had lunch with my pastor and no, my image of course wasn’t correct.

It was a usual service, but the healing part (besides the hymns and the lessons), was only if you wanted to come up as an individual/couple/family. Then you could go up to the altar and the pastor would lay his hands on your head. At that point, only if you wanted, you could say something. And then there was a cross made on your forehead and a short prayer. So Lori and I did go up, but I didn’t say anything and neither did she. And we got the prayer and the symbolic cross.

The concept isn’t so much that this will promote healing of something specific—ie I should be walking normally today (of course I’m not), but more that it’s not about me/us. It’s about turning things to God and God helping to make us whole, in whatever context that may be. So, I don’t expect a cure for MS or that Lori’s cold will be 100% better today (her wish). But I do hope that maybe life will settle—stress will die down, I will be more patient and at peace, and I will be happy. For Lori I hope her little life is as joyful as possible. She deserves that.