Friday, March 28, 2008

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!

Sunday, March 23, 2008

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.

Thursday, March 13, 2008

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.

Saturday, March 8, 2008

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!

Tuesday, March 4, 2008

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.