Monday, July 28, 2008

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.

Saturday, July 19, 2008

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.

Monday, July 14, 2008

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:

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?

Wednesday, July 9, 2008

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.

Monday, July 7, 2008


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!

Thursday, July 3, 2008


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.