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

Math Therapy

Sometimes a little math goes a long way to soothe the soul. For example, one could get very upset (and maybe even cry a little) after spending $1100 on car repairs one month, only to drive less than 700 miles and 4 weeks later be required to spend another $1100 on car repairs for a completely unrelated problem. However, if one does the following math, one may be able to stop hyperventilating and crying long enough to hand over the credit card and authorize the repairs:

2002 Used vehicle purchase cost in 2007 (Craigslist):
$11,000, paid for in cash,
$6000, total service and repairs over 4 years
=$17,000 total cost

Let's say I'd instead decided to finance a new sienna mini-van in 2007 with a good warranty so I would not have had to pay for any repairs (had there been any on a newer vehicle), nor would I have yet encountered the dread 90K mile service and timing belt replacement. By my estimate, I would still have paid in four years:
$26,000 new vehicle purchase cost (total ballpark, and probably low--new ones are now 30-35K)
$3300 interest over 4 years
$1100 maintenance (oil changes, regular service & new tires)
=$30,400 or $13,400 more than I've spent on my van in the past 4 years

Now, for arguments sake, let's say I instead purchased a used vehicle (because let's be honest, I'd never in my right mind buy a new vehicle--not while I can still do math anyway), but a few years newer, put $10K down and financed the rest. Now this is a total guess, but let's say I paid only $3000 in service and repairs since it was a newer vehicle:
$20,000 used vehicle purchase cost (again, total guess)
$1300 interest over 4 years
$3000 maintenance
=$24,300 or $7,300 more over 4 years than I've spent to date on my van.

Yes, so it hurts right now to authorize and pay for those repairs, but (sigh and deep breath) by my calculations, hindsight says I'd not have done it differently. Sniffle. It still hurts. You know, the difference between boiling a frog slowly and dropping the sucker in at a full rolling boil? I feel a little like a boiled frog.

Still, it's all a crapshoot anyway, isn't it?

Sympathy Pain and the Sympathectomy

Ethan was sick last weekend. If you don't know just how much it sucks to go to 3rd grade all week, only to get sick at exactly 5pm on Friday evening so you can be sick all weekend and get better in time to go back to school, just ask Ethan. He'll tell you all about it.

Elliot apparently thought staying home sick from church sounded like a fine idea.

I don't feel good.

Where?

All over.

Tell me one place.

My thigh.

Point to where on your thigh it hurts.

Right here (points to ankle)

That's your ankle.

Oh, where's my thigh?

Right there.

Oh, it hurts right here (points to thigh).

mmhmmm . . .

Speaking of pain, Matt is going in for his annual fall surgery tomorrow. Six surgeries in six years. This is the first on his ankle though--it's a new limb for him. To have surgery on, that is. He actually will get an epidural, so you know, we'll have that in common for future dinner conversation . . .

Remember when my epidural worked everywhere except the important place?

Oh yeah, at least you didn't have to shave your back before your epidural--or did you?

Of course, he gets to have a "walking epidural" which will last for 2 weeks post surgery. That sounds like fun. And he gets to use a knee walker/scooter thingy to get around. With the epidural in place, he's been told, he'll likely be in significantly less pain than he has been in the past 7 months, for the duration of the epidural (and hopefully longer, if the surgery is successful). I keep seeing images of him careening recklessly down the block on his knee scooter shouting "WEEEEEEEE" as he holds his epidural pump in the air, tubes trailing out of his hairless back. I'm not sure how I feel about that, but I'm not about to say anything to the doctor. Or the scooter rental people.

His epidural is intended to be a sympathectomy--a block of the sympathetic nervous system. I'm thinking though that I probably could use a sympathy transplant as I can't seem to find my sympathy anywheres these days. In fact, now that I think about it, I'm pretty sure I once had a sympathectomy, and more than likely an empathectomy too--as preventative measures of course, no sense leaving me open to a future calling as a Relief Society President.

ps. We've been officially married for 11 years now. We celebrated by hiring a baby sitter for a couple of hours on the gamble that Matt might be feeling well enough to leave the house. We did, we actually went out to dinner alone and came home and went to bed in separate bedrooms (so I can't bump Matt's foot inadvertently and he won't keep me awake all night tossing and turning with pain and medication-induced insomnia). Living the dream . . .

Phonetiphilia

Pet peeve of the day: mispronunciation of the word "bruschetta". I'm not going to ask that everyone roll their "r"s, nor clean up their stray dipthongs (we have a lot of those in Texas), but please, please, please people, there is no "sh" sound in bruschetta. I realize there is an "s" and an "h" in close proximity, but proximity does not a digraph make (or maybe it does--but only proximal proximity and only then in a particular order). I could dive into Italian pronunciation rules here and explain why it is a hard c rather than a soft, but I've already spent too much time exposing the obsessive inner-workings of my mind, so I'll quit embarrassing myself and get to the point (let me know if you want details--there have got to be other freaky phonetiphiles out there). Think of a man named Bruce and a woman named Ketta, you're introducing them: Bruce-Ketta. Now think of it a little more phonetically and repeat again: broosketa. Now, look at the word again and see if you can say it without a "sh": bruschetta. Good . . .There, don't we all feel better? I know I do. Now go and tell your friends.

Maybe next time I'll tell you about the time I witnessed a disagreement over the pronunciation of fettucine nearly escalate into a fistfight . . . exciting stuff

Deep in the Heat of Texas

Yep, 110 degrees outside the vehicle on our drive home today . . .

I'm Dreaming of Da Da

Let us establish a couple of things first:

"Da-Da Music" is specifically a Christmas album put out by my dear friend Doris Rosenblatt, an elderly (don't tell her I said that) Jewish woman from Brooklyn. Her memory is going, so whenever she forgets the lyrics, she replaces them with "da-da" (as in "I'm dreaming of a white da-da!"). Doris calls me every year on my birthday and sings to me the "da-da" version of Happy Birthday (how she remembers my birthday but rarely my name is just a wonder). This is truly the highlight of my birthday. One year she called on Christmas--I was verklempt. I have many stories--of my newlywed husband's first phone conversation with Doris, confused baby sitters, the missionaries (we put her on speakerphone that year, so they all could listen in to the fun) and the friends I've repeatedly made listen to the recorded phone messages and more. The Christmas album was a delightful Christmas surprise last year. It showed up as a gift from Dame Rosenblatt herself and I have to admit, we listened to it in the car with the children--a lot. My children may come to believe that "da-da" is truly a part of every Christmas carol written.

Now that we have the context for this Elliotism of the day, let us begin . . .

Elliot: Mom, do we still have the da-da music in the car?

Mom: No.

Elliot: Darn! because I LOVE that music!

(this is August in Texas mind you)

Elliot: Can I listen to it in bed?

Then there was the continued conversation in the car regarding the GPS (or as Elliot calls it "Joo Pee Ess" or as I hear it "Jew-P-S") and so I started asking myself just what would the JewPS say to me when I made that wrong turn? And would she sound like Doris?

"See, see what happens when you don't listen to me!? You just turn right back around . . . No! not now! WE'RE GONNA DIE! . . . alright then, I'm not sure how you pulled that off, but since we're alive, let's get moving already . . . schmutz."

I did find the Da-Da music and Elliot went to sleep listening to it last night . . . sweet dreams baby Jesus . . .

Flamingos

I saw a flock of Flamingos overhead while I was floating in the pool. I don't believe I've ever seen flamingos fly before.

Day 19 of 100+ degree heat here. And this was the last day of the daily pool hours. School starts Monday (can you even imagine going to school when it's 100 degrees out?). Pool is only open weekends through September, then nothing. It better be 65 degrees by October . . . Except really, how refreshing can pool water be when it's baked in the sun all day? I've been contemplating floating blocks of ice in the pool, but somehow I think it'd be futile. I know, at least we have a pool to go to . . . no whining on the yacht!

On the health front, no real progress. Several months and a few thousand dollars later, I think we've determined that there may be more wrong with his foot than just the nerve pain (which is what we told them from the beginning). However, no one is quite sure yet what the other problem is (Medicine = 10% science, 90% hunch). But he's going to have a minor, yet due to the nerve condition, complicated surgery to further a strong guess. Let us hope the guess is correct because after that, we got nothin'.