Week Five (5) - Still Waiting

Today marks the fifth week since returning from Costa Rica. We are nearing the point where we should begin to see results, although the wait is still excruciating. Of course doubt and fear try to creep in and we have to constantly keep them at bay. "What if this doesn't work?" "What if we went through all of this for nothing?" "Will I be able to mentally/emotionally/physically/spiritually handle the toll of MS for the rest of our lives?" I have to admit it is wearing on me. I want to see results and now would be nice! Looking back, we were unprepared for this wait AFTER returning from Costa Rica. For months and months we prepared for that trip and expected for life to begin to get better, once the treatment was behind us. Now, we have to fight discouragement, as well as MS. Good thing we are a tough bunch!!!

My job has also been extremely stressful for the last five weeks, so that is not helping. There is a family with two young children, she is expecting their third in another month, living in Mom's house with their things in a U-Haul truck in the driveway. They were supposed to move into their new house last weekend, but someone (not me) dropped the ball and the transaction did not close. It has been very stressful for them, and me, as well as a number of other people involved. This is only one of four closings this week, and the others weren't all easy either.

Please continue to pray that this procedure will work for Steve. We need it now more than ever!

Rusty Wires

We have been home four weeks and are still optimistic that change is on the horizon. However, things are pretty much the same, other than the hope that Steve is getting slightly better each day, rather than noticeably worse. He is diligently doing his daily exercises, taking vitamins, and getting into bed earlier than before. It makes sense that plenty of rest would be a necessary component to healing, so he is doing everything possible to make it happen.



Nerve damage takes a very long time to heal, probably longer than any other part of the body. Steve likens his situation to an outside wire, with the insulation missing. Over time, that wire will begin to rust due to exposure. The same is true for the nerves in the spinal column which have been exposed, due to the damaged myelin sheath (or protective coating).



In addition to damaged nerves, there are weakend and atrophied muscles, due to the nerves' inability to communicate with these muscles and make them move. Lack of use causes weakness and atrophy over time. This is why the physical therapy is so important. Repairing nerves and re-building muscles is not an overnight process.



Steve is a winner and he continues to fight through the fatigue, weakness, and heat intolerance. (It has been very hot here for the last month.) Even though cool in the house, while sleeping at night, he feels very hot to the touch. Maybe those cells are working their magic! We are still confident that he is going to get better, but it is early yet.

MS - The Thief that Keeps on Stealing

MS is an insidious disease with huge psychological components. Robert, our friend from Costa Rica who coined the term, "Stemmies," is also responsible for the phrase, "MS, the thief that keeps on stealing." This is so true! The most difficult part of MS is the not knowing. From one day to the next, things could be better or they could be worse. It is such a mind-game to not know how your body (or your spouse's body) will work. The only sure thing is that, over time, things will be worse; the fatigue, the atrophy, the stiffness, the spasticity, the loss of control. This slow deterioration creates, at the very least, a low-grade depression. It is a systemic problem that affects the entire family. Our kids have definitely been robbed of a normal life, whatever that is, as have Steve and I. There is so much we cannot do as a family, but we have compensated for those losses in the best possible ways. We are so proud of our girls for the way they have grown up and for their sensitivity to others. That is one positive outcome to this situation.

We are still dealing with the negative ramifications of MS. It has been three weeks since we returned from Costa Rica. There is no significant improvement, although we still have hope, which helps the above-mentioned psychological factors. For once, we think life will improve over time, even though it is not any better now, than it was before. Eight to 12 weeks, we keep telling ourselves. Nerves take a long time to re-generate. My friend Julie, the physical therapist said, "It is like planting a garden. It takes time and patience." She is absolutely right. This is an organic process which does not happen overnight. We are living in, what I like to call, a microwave world. We are used to everything being instantly at our fingertips. Those seeds (cells) have been planted. Now we need to give them time to grow...

Limbo Land

Today marks week two, since we returned from Costa Rica. Still no significant improvement, although Steve did tell me the other night that he felt really well. That is the first time I have heard him say that in a LONG time, which is encouraging. He continues diligently doing his nightly exercises, taking his vitamins, and getting in bed earlier than before. He gets up very early and works so hard. These are all very good habits, regardless of one's condition.

Steve and Julianne are in Albuquerque to see the Bob Dylan concert tomorrow night. Willie Nelson and John Mellencamp will also be there. Should be fun for them! That was Julianne's birthday present to her dad. Laura, Alyssa, and Michelle went with them to Albuquerque today, but came back this evening. The three of us will go to El Paso tomorrow night to see Switchfoot, a Christian rock band. This will be Michelle's first concert and should also be lots of fun!

Hurry Up and Wait...

Steve and I both had to go back to work last Monday, which was too soon for him. The trip was intense and he could have used another week off, to recuperate. Thank goodness it was his "compressed Friday" week, so he was off yesterday and slept a long while in the afternoon; probably the best thing.

Waiting is hard. For so long, we planned and anxiously awaited our trip to Costa Rica. Between making those arrangements, caring for three kids, both of us working long, hard hours, and running a household, life has been a little too full over the last year. Now that we have the stem cell treatments behind us, we are anxiously awaiting results. They are not visible yet, although Steve does have a healthier look about him today. I noticed it this morning. Then, we had lunch with friends and they commented on it too, without me saying anything. Maybe it was the long afternoon in bed yesterday or maybe just wishful thinking. Either way, Steve is diligently doing his therapy workouts, which always augment overall well-being.

The doctors, nurses, and therapists at ICM and CIMA Hospital said it would take 8 to 12 weeks before we see any results, and we have one week under our belt. I remember a friend of mine, when told that patience is a virtue, replied, "and not one of mine!" Usually, I am a very patient person, but I must admit, this is tough. We want to know that this worked, that our efforts have been worth it, and we want to see results of that. Hurry up and wait...