Matt & Christa (dot) com

Detroit transplants living in Dallas

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Prednisone Sensitivity

What's that look for? - Monty 9/27/13

Monty is extremely sensitive to the side effects of Prednisone (see Cushing’s syndrome), but it is also the only drug proven to keep GME at bay. It’s a delicate balance of disease treatment and symptom management we’ve been through before and will get through again.

Today’s neurologist checkup went well with the CBC panel coming back normal, so he had another Cytosar treatment. We’ve started a new daily supplement called Denamarin to help support his liver functionality and health with all of the medications he receives daily, and have introduced Leflunomide in the hopes of supplementing and eventually replacing the Prednisone that gives him such a hard time. While Leflunomide has not yet gained widespread acceptance as a GME treatment, Dr Allen Sisson (one of the leading doctors in the research and treatment of GME) has seen remission rates of up to 90% at 1.5 years when including the drug in long term treatment protocols. Additionally we decided to see if we can drop the daily antibiotic without any new UTI or hot spot issues in an effort to reduce the daily med load.

I Believe In Paradise


Found this quote the other day and it totally brought me back to something else I posted recently.

And me, I still believe in paradise. But now at least I know it’s not some place you can look for, ’cause it’s not where you go. It’s how you feel for a moment in your life when you’re a part of something, and if you find that moment… it lasts forever…
— Richard (Leonardo DiCaprio) in “The Beach”

I’m still having trouble adjusting after experiencing my moment, and with every photo and retold story I keep going back.

So is your paradise a place or a moment?

The Futility of Writing About the Last Two Weeks

Aaaaaand we’re back.

Sunset Over the Playa

It took a few days for the dust to settle (literally) and for me to attempt to coalesce my thoughts into something, anything, that might be cohesive enough to communicate what we’ve been through. I’ve wasted dozens of Post-its writing fragmentary scribbles, spent hours reviewing photos, and more time staring blankly at this post than I care to admit. The only thing that I keep coming back to over and over is how futile this whole exercise is; how extraordinarily pointless it is to even attempt to put anything into words. It was motivational. It was inspirational. It was mind blowing and eye opening. It was also intensely personal, and I don’t feel I would do any bit of justice trying to describe specific experiences. I’ve always been told a picture is worth a thousand words, but what happens when words fail to properly convey a moment frozen in time?

I’ve never felt more miniscule and overwhelmed in my life than that first night under the Man, and the weight of emotion in the Temple was oppressively palpable. The intensity of it all came crashing down on me at once like a tidal wave rolling over a picturesque seaside village. But then something happened from within that maelstrom just as it threatened to engulf me, and I found I had simply opened myself to it all. I let go. I let go of waiting for things to happen, of being jealous of the experiences of others, of missing out on things, and of forcing things to happen. And that’s the beauty of it all! It’s in that moment you discover that this, life, everything, is a Choose Your Own Adventure book filled with limitless possibilities per page. The only thing that matters is that you participate.

How do you explain the unexplainable, those seemingly unconnected but perfect coincidences? You can’t. I’ve never been one for Churchy spiritualism, but I know Einstein once famously said God doesn’t play dice with the world, and I’ve been fascinated with the dualities of chaos and higher power ever since. There were times out on the playa when I found myself trying to fathom if what was happening was simply the sum total of subatomic particle interactions through space and time or the amalgamation of existence directed by an unseen hand. I recognize now I can and will never know the true answer, I can only accept it as absolute synchronicity.

Thinking back to the moment it registered with me that we were actually leaving, the last words of Roy Batty’s monologue in Bladerunner sprang to mind:

I’ve seen things you people wouldn’t believe… [laughs] Attack ships on fire off the shoulder of Orion, I watched c-beams glitter in the dark near the Tannhäuser Gate. All those moments will be lost in time, like tears… in rain…

Once I left, there was no longer an opportunity to share, as all of it would be out of context and just not make sense. With it all gone now I realize that the memories I have are not really what’s important, they are merely data sets along for the ride of this humble Homo sapiens. What’s important is how these memories shape my interaction with the world around me. The specifics may be lost when I expire and am forgotten, but what I do with them will live on forever.

So in the end I can only throw up my arms in defeat. The desert was hot, San Francisco is an amazing city I want to live in, my friends are awesome, I love my wife, and the experience as a whole has affected me much more profoundly than I ever thought possible.

I can’t wait to go back…

New Adventures and Experiences

There won’t be much in the way of any updates here for the next two weeks as we begin our first lengthy vacation since we were married in 2007. Monty is neurologically stable and will be staying with our good friends and his best doggie buddies. Bailey will be with them as well, so I know our kids are in a good place and in great hands. Without this I’m not sure we could undertake this in the right frame of mind, so we are thankful to have friends that are family.

In two days we embark on a much anticipated adventure with several of our closest friends. I have no doubt it will be an intense, emotionally cathartic journey, but not unlike the Phoenix I can’t wait to emerge from the ashes renewed, refocused, and a better person for the experience.

We’ve been planning and preparing for this for months but now it’s finally real, and I can’t imagine a better group of people to share this with. We’ll see you on the other side…


Monkey see monkey EAT

Changing to a new antibiotic last week has led to a HUGE improvement in Monty’s activity level, socialization, and awareness. He seems much more content and if smiles and licks are any indication he’s the happiest dog alive right now! Tomorrow is another checkup with the neurologist and we plan to discuss modifying treatment to lower the Prednisone dose due to his extreme sensitivity, but for now we’re happy he’s happy.

Really CVS?

I shop at CVS all the time, some days I’m there several times in a single day. It helps that it’s 500 feet from my front door, but I’ve never really had a bad experience there in almost three years. Until now…

It was late last Friday afternoon right as the latest hot spot breakout was getting started. I had Monty’s Cefpodoxime prescription called into my normal CVS pharmacy in the hopes I could start the first dose the same evening to stop the hot spots in their tracks. At that time they could only dispense three pills which would get us through the weekend and they’d place an order and fill the remaining on Monday. Monday rolls around and I stop by in the morning to find out that order was never placed so they can only dispense another three pills. No problem, I’ll come back a third time for the same prescription. Keep in mind up to this point I haven’t paid a dime and all of the receipts say $0.00. So I’m sure you can imagine my shock when I picked up the remaining 24 pills and $182.99 shows up as total due. Still in shock I stumbled home to discover that 1-800-PetMeds had the same medication for $45. Ugh!

Unfortunately with the timing on this it appeared there would be no way to get the prescription he needs before he ran out of the supply on hand or when we leave for vacation. So as much as it pained me I had to suck it up and pay. I did however place an order on PetMeds, used a $5 coupon code, and with free shipping a 30 day supply was going to be on it’s way for $40.

So moral of the story? Always ask for the price of your prescription before you fill it. Ask about price matching policies. Shop around. While I’ll admit CVS has generally been cheapest on everything else, in this case I got screwed hard so I won’t be filling this one with them again.

Where Time Becomes A Loop

Monty's bedtime

Worf: There is the theory of the Möbius — a twist in the fabric of space where time becomes a loop.
Geordi Laforge: When we reach that point, whatever happened will happen again.

STTNG, Orbital – The Moebius

Monty is trapped in the Moebius as another week off antibiotics leads us to a new hot spot. After a discussion with the neurologist yesterday it sounds like he’s going to be on antibiotics for as long as he’s on Prednisone, so we opted to change to a once daily dose of 100mg Cefpodoxime.

He’s had more bad than good days as of late, and it’s been hard to watch him be miserable. Given the tummy trouble antibiotics tend to give him we’re hoping this adjustment to a single overnight dose helps improve his activity and disposition during the day.

Candid Moments

deep in thought

Sometimes I wonder what’s going through his mind; if he knows what he’s been through, what WE’VE been through with him. I’ve always enjoyed these quiet moments together in the park, it’s just lately they’ve become even more important to me because I know there’s one less to be had.

Beatin’ The Heat

Monty's new water bed

So we got Monty a water bed. Yep, I’ll let that sink (har har) in a little…

As a result of the Prednisone side effects, we’ve been watching him splay out for weeks on the Terrazzo floor trying to stay cool. In an effort to keep him comfortable AND cool we picked up the Cool Bed III and have been happy to see him using it regularly. With the amount of body heat he is putting off it’s hard for him to stay in any one place that absorbs and retains his heat for very long, so this has been the perfect solution to help regulate his body temperature. He uses it on the floor during the day while I work, and at night we have been putting it on the end of the bed. I’ll admit I was a little skeptical, but when I pick him up in the morning to go out the temperature difference of any part of his body not on the bed is pretty amazing.

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