Sometimes it doesn't pay to wait

My co-worker, Mike, and I at TNC's River Jam Tent at the US National Whitewater Center - June 2012

Hello loyal readers!

It has been some time since I felt inspired to write, and you know what that means. Time for a quick run-down of what has been going on!

The big(ish) news is that I am currently on a 2-week course of IV antibiotics. I had not been feeling spectacular for a while (more congested, coughing more than usual...) for a while, but I was totally hanging in thanks to exercising a lot and my trusty stop-coughing go-to pills, guaifenesen. The cards really started to fall the week that I had a grant writing workshop in Greensboro mid-June - I was feeling super tired and run-down. I got started on some oral antibiotics which worked really well for a week or so when I went to see my doctor.

At that time, my numbers were a hair below what they were last time, which was also a little lower than they had been the time before that. My real concerns were my energy dropping and also that I have two awesome vacations coming up that I want to be in tip-top shape for. So we went for the IV antibiotics. And I knew right away that I had made the right decision. (And, for the record, Todd knew like three weeks before then that it was time for IVs soon.)

The day after I started on them I felt really horrible: tired, achy, malaise, fever, no appetite. But since then, things have been going along pretty well. I haven't had any trouble with the Tobra (I had some tinnitus the last couple of times I was on it, which can correspond to hearing loss) except that they had to increase my dose because my levels were too low.

But the really weird thing about all of this? Unlike every other time I've been on IVs when I would totally beat myself up about missing work and always be trying to do more than I should, I have been totally enjoying my time off! I feel kind of guilty saying that. But who wouldn't love an unexpected 2-week vacation? Of course it's not all fun, but largely I have slowed down and taken time for myself to heal. And it feels really nice.

Image taken from sodahead.com

In other news:

• I am finished with my PT for my herniated disc/sciatica! And I leave there having a solid set of exercises that work really well to control my symptoms. Still have not gotten back to yoga - that is the next step. Also still doing monthly acupuncture and weekly massage (which is absolutely fantastically awesomely paid for by my insurance.)
• Todd's dad has been staying with us a lot lately - he is getting cancer treatment here in Raleigh and lives several hours away. He started chemo (for the second time) recently and he's having a bit of a rough time of it. His health has been really up and down, and it's hard on all of us. Especially him. All of us are focused on our trip to Montana right now.
• I got out with Elaine to sell some soap last First Friday! We sold it at a friend of our's bar. I know it sounds weird, it kind of is, but it's fun. 
• Super excited about going to the beach with my family during the third week of July. And also  for our Montana trip in August!
• Work is going really well. I have an intern! Who is both awesome and really talented. This is my first time really managing somebody and I really like it. Also, I was doing a bit of traveling in June and July - two trips to Charlotte and then Greensboro for the grant writing class. It was nice to get away.
• Probably not news to any of you that the weather here has been brutally hot! We just broke the record for the number of days in a row over 100. Between that and the holiday last week, it's as good a time as any to be missing work and just laying low at home.

Image taken from kbosweeney.wordpress.com

Two great beach weekends

Spent the last two weekends at the beach with Todd's brother, father and our four-year-old nephew Sawyer. Three generations of Platts! We had so much fun. I thought I would show you in pictures.

 Roger and Brad made a stopover in Raleigh to pick up Sawyer and Jill from the airport. This meant FOUR golden retrievers at our house!

 Todd, Dan, Brad - We went down to Myrtle Beach to celebrate Dan's 50th with him.

 Todd, Sawyer, Brad

Todd and Sawyer playing frisbee at Holden Beach

 We went to a nearby TNC preserve - the Green Swamp - to look for Venus flytraps. Sawyer had a lot of fun but got tired at the end.

 Sawyer and Brad on Holden Beach.

 Sawyer loves his puzzles!

 Sawyer and I in the Green Swamp.

Sawyer's first time surfing - he's great at practically any sport he attempts.

Lost...and found?

Last week I had my 5th steroid injection (didn't seem to do a lot of good, unfortunately, same as the last one) and I had my first appointment with a new physical therapist. I really liked this woman.

She was quickly able to tell what was going on, and it is two-fold: My flare-up right now is more of an SI joint issue than a herniated disc issue, she thinks. Both things are at play, but the SI problem is predominant. And I agree. THIS IS GREAT NEWS! Because it means that surgery for a disc is far away from an option now - right where I want it to be.

But it is kind of a tricky thing because the treatments for the two things are kind of opposite: for a disc issue, you want to do back-bending type exercises and for the SI joint you want to do forward folding type of things.

The very first thing is to get my piriformis muscle to release. It runs through my glutial area and is SO unbelievably tight. Super super tight. It's really painful to stretch this muscle, but I'm hoping it will get easier over time.

Anyway, I really like this new PT woman and I'm hoping that she might be the person I've been looking for. I have gotten lots of pieces of the puzzle figured out from various people. My acupuncturist probably had a better idea of what's going on than anyone else before now. But no one has had as good of a grasp as this woman.

So we'll see. I'm hopeful...kinda. :)

Back saga, part deux

For those of you who follow my blog, you may recall a post I wrote back in September outlining the journey of my herniated disc. (What's up with my back?) To summarize, my problems began a year ago and I have tried almost everything imaginable to treat it. While much of the past year things have been okay and the pain has been either manageable or, in some cases, completely gone, I find myself now in another fairly acute flare-up. I'm frustrated. I'm discouraged. I'm tired of being in pain. But I am not giving up!

This coming week I am going to try a couple of things:

• I am going to see a new physical therapist, one who knows a lot about both herniated discs and how to exercise properly with them.
• I am going to see a woman who does massage/body work/energy healing. My friend has been recommending this woman to me for years, and now finally seems the time to check her out. I'm a little skeptical but at this point I have nothing to lose.
• I am also going to continue with my acupuncturist (yay!) and incorporate 30 minutes of massage before my treatment.
• Getting another steroid shot in my back. The last one didn't help but they are usually done in sets of two or three so maybe something good will come of it.

Additionally, I started a new medication this week called Neurontin. It was first used to treat epilepsy but is also used to treat nerve pain. It does seem to be helping - I've been taking a lot less pain medication since starting on it - and I haven't had any side effects with it yet. So it is promising.

Cutting back

I've been really lucky in that Prednisone has never had the "monster" effect on me - except for maybe a few times when I was on a really high burst. And even then it mostly manifested as having a lot of extra energy (i.e. an extremely clean house!)

Some history: During 2008, my lungs took a pretty big dive. Part of getting my lung function back - which turned out to be an incredibly long process - was adding Prednisone to my routine. It worked really well for me. Almost, it turned out, a little too well.

I say this because it's not uncommon for cystics to do a burst of Prednisone during an exacerbation - they'll start as high as 40 or 60 mg/day and taper off of it in a week or so. My problem was I responded so well to it that I was never able to taper off completely. I've tried though! Part of me starting allergy and Xolair shots in 2009 or so was to try to get me off of the oral steroids. I'm sure the shots have helped, but not enough to get me off the Prednisone.

I've spent a large amount of the last four years on 10 mg a day. This isn't a terribly high dose, but ideally I'd be somewhere around 5 mg. I honestly don't think it's realistic to be off it entirely. But steroid use does not come without consequences: Long term use is not good for your body - steroids depress your immune system and contribute to bone loss. That's especially bad for cystics because we have a predisposition to bone loss as it is from our malabsorption issues. I was diagnosed with osteopenia (a stage of bone loss less severe than osteoperosis) before I even started Prednisone.

So, since I have been feeling so awesome lately and I'm in an 'exercising like crazy' stage, I thought this was the perfect time to try to taper down. This happened in several steps - each one would make my body feel like total crap for at least a day - and the result is that I am now down to 5 mg! I am so happy and really proud of myself.

So far it is going well. I do notice a little less intensity of being able to exercise, but I'm hoping I can build that up in time. Go me!

We had a great trip!

Joshua trees, scrubs and nothingness in the Mojave Desert
aka, "I Still Haven't Found What I'm Looking For."

We arrived in Vegas about 3pm, rented a car and checked into the Mirage, one of the classic hotels on the strip. We walked around to a couple of other casinos (I say this lightly but any walking between casinos in Vegas actually requires a tremendous amount of walking), had dinner at a diner-esque place inside the casino that specialized in great burgers and spiked milkshakes. The trip was off to a good start.

The next day, we packed up and headed south to Joshua Tree National Park via a 3 hour drive through the Mojave Desert. Man, when they say there is nothing out there, they are really right. There was no where to stop had we needed food, gas or water.

View of the moon over adobe wall

By the time we got to the little adobe we had rented at the 29 Palms Inn, there wasn't much daylight left, so we settled in and then ate what turned out to be the first of several really great meals at their restaurant. The Inn has a huge garden where they grow food for the restaurant - they are big into local and organic food. And we have reason to suspect it was the best restaurant in town.

Our first day in the park, we did our biggest hike - a 3-mile loop trail over several ridges that led to an oasis in the middle of the dessert. Armed with water, snacks, extra layers and my new hiking boots, we set out. The hike was amazing. We hoped to see some wildlife like big horn sheep (who frequent the watering hole) but sadly we didn't. We didn't see any other people either, though, which was nice. After that we were pretty worn out.

on our hike to the oasis

The next day we woke early, still not adjusted to the time change, and had a long day of sightseeing in Joshua Tree National Park. The expanse and uniqueness of the Joshua trees is really just amazing. We drove along the main east-west road in the park toward a favorite short hike a local had told us about, stopping along the way to take lots of pictures, of course.

The other thing Joshua Tree is famous for is rock climbing. To set the stage, there are the strangest geological phenomenon in that area - a testament to the proximity to the very active San Andreas fault. You will be driving along for miles of flat land and then suddenly there will be what looks like a huge pile of rocks - some look so perfectly stacked you swear they had to be put there by humans if they weren't so darn huge.

Todd doing some 'bouldering'

The next day, we got a picnic lunch and took the main north-south road all the way to the south of the park and did some short hikes around there. We also drove to an amazing look out point from which we could see almost to Mexico to the south - the Coachella Valley below, the San Andreas fault running straight through it - and toward the town of Palm Springs to the west. Very cool.

facing away from the beautiful Coachella valley :)

Our final morning at the adobe, I woke up early (still not adjusted to the time change or just plain excited about the day ahead). We had some extra time so we did one last drive through the park and one short hike before heading west toward my friend who lives outside Santa Ana. Along the way - literally along the way, we just got off an exit at the highway we were traveling on - I met one of my longtime CF friends. We had a quick lunch, but what can I say...it was great to see her and she is just as awesome in person as I thought she would be. :)

Another hour or so later and we were at my friend Katie's house in the cute little town of Tustin, CA. We hung out for a bit, got situated, and then that evening went to see a hockey game with her and her husband. Anaheim Ducks vs. Carolina Hurricanes, baby!! It was so cool seeing the Canes on the road. I felt like they had traveled all the way across the country to come on vacation with us! Unfortunately we lost the game - it was very close - but it was still a fun time.

Katie and I at the Ducks game

The next morning, I talked Todd into driving to the Pacific ocean - we were so close not to go see it!! before heading back to Vegas. A 20-minute drive took us to the very posh Costa del Mar, near Newport Beach, home to some big time celebrities. We took a quick walk on the beach, admiring the beautiful, gigantic houses, snapped a few pictures and then were on our way.

Costa del Mar

Viva Las Vegas:
We were back in Vegas in under four hours; checked into the swanky Aria hotel, upgraded to a room with an awesome view and went down to meet up with our friends. We had five friends fly out to Vegas for the long weekend - and one of those friends also invited along about seven other guys for a bachelor party. We didn't end up seeing the guys much after that, though. After a couple of drinks, Todd and I went to the Elton John show at Caeser's Palace. It was really amazing! So much nostalgia for me... but he really is a great performer still. I was totally crying during a couple of songs.

On Friday we went to an international rugby tournament called the Rugby Sevens. One of the guys who went out with us is a huge rugby fan, and he had wanted to come to Vegas during this particular weekend. The games were super short and very fast paced. I was thinking I might be bored, but we actually had a ton of fun! People were dressed up in all kinds of crazy outfits, everyone would hoot and holler when their team was playing. It was the drunkest friendliest crowd I'd ever been amongst. And sitting with several incredibly cute college rugby teams wasn't bad, either.

some of the more moderately costumed fans

Later that night, I did the majority of my gambling for the trip. We played some roulette, didn't do very well. Then we sat down at a $10 black jack table for about an hour. Todd was schooling me all the while losing about $200. I quit a bit later and felt damn good about being up by only $5. Todd also played craps a couple of times - a game which I may never understand - and did quite well.

The next morning, I played in my first poker tournament in Vegas! Todd played too, but it was the third one of the trip for him. Most of you know that we are big poker players, so I am definitely no stranger to tournaments. Unfortunately, I didn't do very well in this one. I was shortest stacked when the two tables combined and I tried to be aggressive and push at the wrong times. Oh well! I was bummed, but it was a good experience. I would definitely do it again.

We decided to try to see another show Saturday night with our two friends Craig and Katie. Ended up getting discounted tickets to Penn & Teller, two libertarian - and yes, that does figure into their act - fairly well known magicians. That was a fun show. After that, we went to the ice bar at Monte Carlo. Everything there is literally made of ice, even the glasses and chairs. It's very cold, but we upgraded to "VIP" and all went in with big fur coats and hats and were plenty warm.

We headed back to the room about 1 to pack up and try to get some sleep, then woke up at 7 or so to leave for the airport. Vegas is very beautiful in the early morning.

Vegas in the morning...almost looks peaceful!

So, in summary...

Five best things about my Vegas trip:

1. Ate and drank like a complete and total glutton.
2. Found my lucky (roulette) numbers!!
3. Cinnamon buns from Jean Philippe ...mmm...
   
4. Todd grabbing my hand during "Your song."
   
5. Getting to dress up all fancy-like.
   

Five worst things about my Vegas trip:

1. Smoke, smoke, smoke!
   
2. Everything is SO expensive.
3. No coffee makers in any of the hotel rooms!! (fortunately most casinos have their own Starbucks, but still...)
   
4. Having to walk and walk and walk to get anywhere (although, probably good because of #1 on my first list).
5. Having a room fancy enough to have an electric "do not disturb" switch, yet also being asked every day if we really didn't want to have our room cleaned.

The journey

Not all journeys end in Vegas, but this one most certainly does.

Almost one year ago, I came down with the flu (after having gotten a flu shot) and ended up in the hospital. As that was the third time in about a year I was on IV antibiotics, I decided to go ahead and get a port-a-cath, which I'd actually been thinking about for a few years.

I slowly started to come back to life from the flu, and I got my port bright and early on a Monday morning (the 28th of February in fact). Everything went so well I felt sure I'd made the right decision about getting it.

Then a week later - five days before we had a trip planned to go to Vegas - I noticed some pains in my arm and shoulder that turned out to be a blood clot. I was admitted back into the hospital after a long night in the ER of the state's biggest public hospital. The next couple of days was a roller coaster of emotions, from learning about the dangers of blood clots (pulmonary embolism, while not likely but often fatal, is the big worry in my case), to getting over the last of my lung infection and worrying about what would come of our trip.

As soon as I was able to make the transition from a heparin IV to lovenox shots (the prescribed treatment for blood clots until you can thin your blood out enough to switch to coumadin), I was itching to get out of the hospital. I made a deal with the docs: if they let me go home, I promised not to get on the plane to Vegas the next day, which was deemed too risky with a blood clot.

So, I missed the trip to Vegas.

I spent the next couple of months having episodes of panic over the blood clot, going to the Coumadin Clinic at UNC once or twice per week - and a total of five months on coumadin (which means you have to limit alcohol and be really consistent about your diet and exercise to keep your levels consistent). In the end, it was a good decision to get the port, because after the clot cleared up, we could see on a scan how my vein had narrowed from all the picc lines I'd had - no telling how many more lines it could have held before a problem developed there.

Fast forward a few months to where my fortune seems to have changed. I had a series of trips planned at the end of last year (trip to MI to see my new nephew, trip to OH for Thanksgiving, trip back to MI for Christmas) and each time I said to myself, if I can only get through this trip without being sick, I'm fine with having to go on IVs when I get home.

I made it through each one of those trips, and have managed to not get sick despite the plethora of sick people I have inevitably encountered. Naturally, after my Christmas trip, the next goal was getting to Vegas. I almost thought about going on IVs before this trip just so that I would be at the top of my game, but my lung functions at my last appointment were so good (yay!) that didn't make sense.



So here we are. We are flying to Vegas today, and then driving down to Joshua Tree National Park for three nights, going to visit a friend (and see the Hurricanes play out west!) in Anaheim, and spend three nights back in Vegas with five of our friends.

I'm so excited, I can't wait.