Unexpectedly

If I could go back 15 years or so and lay out what I thought would happen in my life in the next 15 years or so, I imagine I would have guessed wrong--oh so wrong on so many counts. Let's see . . . I was 23, a college graduate, living in Italy as a missionary. As I pondered my future I considered possibilities--perhaps I would live in New York, or stay in Seattle, maybe even head for London again. The world was wide open, seek a career in Theater, go to graduate school. Perhaps I would marry, perhaps not. But I didn't figure that choosing marriage would have so drastically shaped the course of my life. Yes, I was also naive at 23. Since then there has not been graduate school and only brief stays in New York and Seattle. And since then I can add Florida, Colorado, South Carolina, Michigan and now Texas. Oh, and a few weeks in Greece. I've traveled and lived in some stunningly beautiful places. I've lived in suburbs, farmland and in the mountain tops. All things I never would have imagined 15 years ago. And yesterday, a new unimagined first, I bought a wheelchair for my 34 year old husband.

My how life changes, and changes us. He doesn't need a chair all the time--but we wanted to give him more freedom--maybe we'll take the kids to a museum over Christmas break and he can come along instead of laying in bed at home. He likes to say "I can be in pain at home or I can be in pain away from home." which is true, except it's hard to be in pain and walk very far. So now we can push him around--I've waited years to push him around . . .

Who knows how long the chair will be present in our lives. But for today it is needful. I've never been able to second guess my future, so I'll try not to do so now. For now we try and enjoy the good in our lives and find ways to laugh about the unexpected circumstances. If I new how to knit, I told Matt I would knit him an afghan for his knees and maybe a shawl for his shoulders. It's tough being married to an old lady . . .

PS. The Chair I think needs a name. The scooter he had for a few weeks we named Perry, after the platypus. I'm thinking of calling it "Dr. Doofenschmirtz", "Doof" for short.

The Waiting Game

Elliotism of the Season:

"Bless this food, and bless that it won't feel like so long until Christmas because, (pause) you know. And bless . . . "

Yeah, He knows.

One Step Back

So now that I have people worried, let my add a little clarity to that last post. As you know, if you've been following the saga, we had some great promise with Matt's health. Things were looking up. I thought we'd hit bottom and were making our way back up out of the hole. Then, he began to backslide. He'd come home from Utah, done a couple weeks of therapy, was doing really quite well, then something happened. We don't know what, but something seemed to retrigger the nerves and they began to flare up again. We'd had him scheduled to return to Utah for another round of treatment and went ahead and sent him, thinking it was good timing. This round did not go as well as the first. We don't know what triggered it, but after his second treatment session of this round, his pain was significantly reduced and all was well, until a few hours later, the pain came back with a vengeance. And his whole leg, toe to hip began convulsing uncontrollably. He was in excruciating pain, his meds weren't helping, so my parents tried to take him to the hospital, but he couldn't walk with the spasms, so they called the paramedics who took him to the hospital on a stretcher. A bunch of Valium and morphine later, the spasms died down and they sent him home. We were able to get him back to Texas and are trying to figure out what to do next.

So, in the midst of a little pity party, I wrote that last post. It's alright though, we're just taking it a day at a time. We're resigning ourselves to the reality that no one knows when or even if things will get any better. That takes some adjustment. I'm looking into wheelchairs and a disabled parking placard. What else can you do but trudge forward? In the grand scheme of things, in the eternities, this will be but a small moment. Yet the things we learn in passing through these small moments will shape our very souls and define who we will be in eternity. I recognize we have been so greatly blessed and I recognize that there are so many people who have far greater challenges than ours, so I hope you don't think less of me for my occasional personal pity parties--I'll try not to post during the next one. Meanwhile, I hope to pass this life's test, choose the better part, avoid pity parties and try to find the joy here in the journey, even when it feels like I'm at the bottom . . .

Hitting Bottom

How do you know if you've hit bottom? It seems just when you think things can't possibly get worse, somehow they do. For better or worse, I cling to the words of "anonymous": "It's all good in the end. If it's not good, it's not the end."

P.S. I love my Mom. She knows how to make hitting bottom just a little softer.

Whistling Dixie

Elliotism:

Mom, only Jesus knows the future, right?

So he knows if I'm going to be able to whistle?

Chillin'

I love Fall! I was so disappointed to discover that Texas doesn't really have fall. It's just like summer extended. You know, still hot, but slightly less so. I had to keep reminding myself when it was 85 out, that yes, it was actually October. And then, just when I thought I would never, ever be cool again, it happened. We gotta "cold" front. It got down into the low 60s overnight--maybe even into the 50s and daytime high? That's right, 73. Then it got hot again, but then, miracle of all miracles! I woke up to frost last week! Actual, no lie, frost! It was 34 degrees out! The daytime high was like 65!

This is my kind of weather. Overcast and 65 (have I mentioned how much I miss the Northwest?). I put on a hoodie and my flipflops and waited at the bus stop, relishing the cool wind on my tootsies. My boys pansied out and complained enough that I turned on the furnace (briefly--bunch of wimps, can't take it when the house cools down to 65 in the mornings . . . ). The weather lately has been really quite pleasant. It's supposed to get back up to 80 again next week (today I actually kicked the a/c back on briefly as it got a little warm and sticky by the afternoon--it's November mind you, a/c in November?), but at least I now have a glimmer of hope that, even though we don't have the lovely fall leaves, at least it actually does cool down around here--occasionally. I'm dreaming of sitting on the front porch in my hoodie and flip flops for Christmas.

Hope

Wow, has it really been since September. I am a slacker. There actually has been quite a bit to write, but it has gone something like this:

Oh, I should blog about that! . . . . snore . . .

But there has been one really good thing that I'll start with: Matt is presently living in Utah. That's not the good thing in and of itself. The good part is that he went there to undergo a new-fangled treatment for pain. His Doc referred to him as a guinea pig. I don't think it's quite that bad. They've been using this therapy in Europe for some time and it just got FDA approval in the US last year. And I believe next year there will be an insurance code, so insurance will pay for it. It's totally non-invasive and has shown very promising (read, nigh on miraculous) results. (for those of you who don't know what's been going on with Matt, see this post)

So, what the heck (as the locals say), we flew to Utah (I have a new found respect for the wheel-chair bound . . . at one point they strapped Matt, straight-jacket style, arms bound and all and wheeled him backwards down the gangway in one of those super-skinny aisle chairs). He's been staying with my parents and undergoing daily treatment and I returned to Texas to keep the mothership afloat.

We'd heard stories of nigh-on miraculous healing and despite our best efforts to not expect him to get up, click his heals and dance jig singing hallelujah after a single session, I think we came with over-inflated hopes. When we think about it, it really has been miraculous (thank you all for your prayers). But the day to day has been more like two steps forward, one step back, and he's going to need more therapy when he gets home and may need to return to Utah for additional treatment down the road. But, the very good news? Whereas he went to Utah unable to walk, and hadn't walked in over a month, after one session, he was walking.

The pain has ebbed and flowed and he's dealing with severe atrophy and side effects as he reduces his uber-load of medications, but ever since that first session, he has been walking. That is miraculous. He's still in pain, but I think he's in less pain than he's been in about a year. That is miraculous. He's due back this Friday--we miss him and can't wait to see him, the boys are hoping he'll be able to wrestle with them and maybe even walk up the stairs to see Ethan's new bunny (a blog post unto itself), so we're cautiously optimistic. He'd intended to do daily updates while he's been in treatment, but as it's been so up and down, he hasn't quite managed that. So I'll post the two emails he did send out and post any more as they come this week. Please keep those prayers coming.

Calmare Treatment, Day 1:

Today I went in to the Spero Pain Clinic for my initial consultation for the Calmare treatment for the RSD in my left leg. I went in with a pain level of a 7 and have not really walked on it or been able to us my foot since the surgery on September 19^th.

They took my medical history with RSD and found that I was an ideal candidate for the treatment, but told me it would be hard to tell what type of success we would see right up front. They found the level on my leg where the pain stopped (about mid-shin) and placed the two electrodes on my leg. They turned on the machine and turned it up until I could feel it. It worked through a whole series of electrical impulses ranging from a light tingling to a zap that felt like a bee sting.

They continued to turn up the strength of the impulses throughout the treatment. To see how my body was reacting, they had me do some tasks or stimuli that were painful before the treatment. My wife rubbed my foot and pushed the areas that made me jump when touched. There was no pain or reaction. They had me stand up without my boot on, and I was able to shift all my weight, taking my right foot off the ground, without any pain.

At the end of the treatment, I had no pain and I was able to take 4 steps to my knee scooter. I then also took six steps out to the elevator. We then went shopping after the treatment, and I was able to walk around the store without assistance and my scooter for 30 minutes with minimal pain. I started to see some of my symptoms return, at that point, so I started using the scooter again. They symptoms slowly returned until they reached pre-treatment levels about 7 hours later. They expect that each days duration of time without symptoms to get longer.

Today’s first treatment exceeded all of my expectations and really is a miracle. I am going to continuing to be cautiously optimistic about tomorrow’s treatment. I am skipping the next two Lyrica doses under medical advice, so we will also see what affect that has on tomorrow’s treatment.

Matt

Day 2 - Tuesday, October 25^th, 2011

Today I went to treatment not feeling as well physically and using the knee scooter. During the treatment, I had less pain, but still didn’t feel great. I realized it might have been the skipping of Lyrica. Right after the appointment, I took my Lyrica and other meds as instructed, and I was feeling better physically and also realized that I was feeling good in the foot. During the rest of the evening, I was able to keep walking the whole time in the boot. I decided to take the boot off and was able to walk around on the carpet, do my therapy, and move it around more than I have, all with minimal pain. Leaving the appointment, I wasn’t too optimistic (they said I might have bad days), but it got better as it went and I have not used the scooter at all. My leg is very weak and atrophied, but I am able to use it like I haven’t in months.

Day 3 – Wednesday, October 26^th, 2011

I got up this morning and was continuing to feel good and did not need to use the knee scooter. I spent a lot of the morning outside of the boot doing physical therapy and walking around on it. My leg was fatigued, but not painful, so I made the decision to go to my appointment in my tennis shoe and my air cast. I went to treatment and it was a little painful, I may have let them turn it up too high. I went home after therapy and started experiencing a lot of fatigue and it started to spasm. It wasn’t painful, just a little annoying. As the evening progressed, the spasms got more violent and the RSD pain became pretty strong, and it was very weak and very difficult to walk on. I made the decision to put the boot back on to help hold it in place from the spasms. Emotionally, it was also a difficult evening because all had been going well, and now I felt like I was taking a step back. Looking back, I think that I pushed it a little too hard and I am trying to let it rest and take it easy. There will be good and bad days, and I had a really bad day, but I just need to stay positive and make slow, purposeful decisions and not try to rush things.

Day 4 – Thursday, October 27^th, 2011

I got up this morning feeling better than the night before. I am still in the boot and am resting it this morning, due to overdoing it yesterday. I am having problems with symptoms from withdraw from the Lyrica, but the pain is still very manageable, as compared to the past. I am able to walk on it in the boot with very little pain and sitting still, the pain is very much absent as compared to a few weeks ago. This is working, but it is going to be slow going and I just have to have patience. Today they added another set of electrodes to my foot for a total of two to help with the treatment.

Day 5 – Friday, October 28th, 2011

I am feeling better today with the withdrawal symptoms. I am about the same with my foot today. They added a third electrode today for my treatment and it is still feeling pretty good. I am still limited, but looking at the week and where I have come, I couldn’t even get myself onto the airplane a week ago, and now I am able to walk slowly, but for moderate distances in the boot. That in and of itself is huge and a big accomplishment. I was warned today that I could have increased pain this weekend due to the fact that I will have two days without treatments, but I will just keep pushing through and resting as needed. The week has been a little bit of a roller coaster, but overall, it has been more up than down.

Matt