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.