on the Colorado River (in Austin, TX…different than the Colorado River to the West…)
Some of you may know me pretty well by now. After all, the site is over 3 years old now….can you believe that.
But, I wanted to give some updates as to how and what I’m up to lately. (For anybody who is visiting iHaveUC for the first time right now…well, the site is all about Ulcerative Colitis (except for this post in some ways). I started the site over 3 years ago because I was diagnosed with UC and dealing with some strange medication side effects from Humira. As of today, there’s been over 966,000 visitors to the site. Lots of people have UC, so don’t feel alone. Long story short, the site now has over 1500 stories from different UC’ers worldwide, and there’s a super cool growing group of people who use the site from over 50 countries every day. You can join the newsletter, add your story, or read up for as long as you like.)
The end of 2012 concluded with me resigning from my job in San Francisco(great idea), Michaela graduating from CAL and us heading back to Eastern Europe for a few months. And 2013 has turned out pretty interesting so far too.
Michaela and I are just over 5 weeks deep into an across the country trip, and we are for sure tripping pretty hard.(no mushrooms, LSD, or alcohol for that matter if you can believe it(at least for me anyways).
So with the help of our 3 year old digital camera that still works pretty good…here’s how all is going:
Some couples start off with getting a dog or cat…we decided on getting Betsy. She’s a 1989 VW vanagon and so far has only scared the crap out of us once on our second day out. Found her in Santa Cruz back in September 2012 with just under 120,000 miles. At 50-55 mph, which is how fast we normally roll, she is no race winner…but she’s worked out real well so far.
Sunsets. Watch them! One of my for shitzles most favorite parts of this trip is how much we are outside. AND…lucky enough, that’s a pretty good place to watch the sun set. I’m always trying to think up some things that the UC’ers of the world can do to help relieve stress that pops up daily…and I think taking a few minutes and going out and watching the sunset (or sunrise) can do just that. They are not always amazing, but sometimes they for sure are! Good luck sunset/sunrise-watching everyone
Here’s the sunrise at Borrego Springs Campground just south of Palm Springs, California (or Coachella…if some of you follow that music festival)
here I am watching the sunrise, its about 6:30 in the morning (and of course Michaela’s still sleeping)
Shower time! Well, may look kinda funky, but this solar shower deal we got on amazon.com has turned out to be one of the best $29 investments yet. We mostly end up using it for dishwashing and it works great as a final rinse. Luckily, almost all of the state campgrounds have showers where we have been so far.
Michaela has started making a pretty incredible beef soup. It’s not too far off from goulash, but no flour or grains at all and its SCD legal for sure. I think we are up to about 4 of these so far, about once per week. LIke so many soups, it even tastes better the next morning/day…if there’s leftovers of course.
Can you see the rabbit in this picture???
we met a Czech family camping next to us and the father basically forced us to go hiking up the canyon near the campground. It was well worth it, as there was an oasis of Palm Trees (with shade) and a creek near the top of the 1.5 mile hike. Super happy we brought a ton of water too, it was pretty toasty.
Breakfast at pinnochio’s restaurant in Palm Springs…lots of GREAT sight seeing inside this place. Ordered an omlette…but looked like they add milk to their egg batter so didn’t eat much of it since I stay away from cow milk. It turns out that when we are camping, and in control of our own food, things work out better (and waaaaay cheaper even though Grandpa Ron paid for this meal!)
After Palm Springs and staying with some family for a few days, we rolled over to Joshua Trees National Park. Those funky looking trees are pretty neat to check out. We even had a fox roll through the campsite that was vacant within a few hours of us arriving. It was took quick for me to snap a picture, but pretty cool either way.
Even though it was a short trip in Betsy that day, its always a happy time once you set up camp. (and we’re saving about 10 minutes each time without needing to setup the tent anymore)
Some birds next to us pecking around. Can anybody guess the birds here??? They got a little dangly guy over the head…there’s your clue.
Michaela and I hiked a pretty simple 4.4 mile loop our first and only day at Joshua trees. We ended up getting some serious winds that night (they actually shook the van on their own) so we opted to get the heck out in the morning. as the winds only got worse the next day.
Michaela hooking up some dinner! Hey hey!
I don’t remember exactly, but I’m judging by the look on my face that I probably won at cards this night. I’m not a good loser at this new card game Michaela showed me…and so far she’s winning most of the time. There’s no translation into English, and all I can say is its somewhat like playing Gin…
I can’t imagine living in the Mojave Desert and dealing with hardcore full on Sand Storms on a regular basis. For any of you living out there…I got to give you a crapload of credit. That stuff sucked a big fatty, and sand blasted the hell out of our rig. No damage done, but for sure raised the stress levels to new highs for the trip. This picture doesn’t look that crazy…but let me tell you. We had to bring the car to a complete stop once because we could not see past the windshield. The wipers were pushing sand off the window like it was being thrown at us in huge buckets…nastiness!
We were super pumped to make it to Las Vegas. An old roomate Joe (on the right side and his wife Jill) took us in for two nights at their palace in the lands of Vegas. Crazy enough, Russ (on the left next to Michaela) was also in town for work, so we all had a few great nights together. Russ’s dad actually is a pro at making home-made sauerkraut, so I got the recipe from him. Need to get down to business and give it a try and I’ll for sure pass it along once that comes out good. THANKS Joe, Jill and Russ for all the good times!!! (Oh and that crazy looking buy in the dark blue shirt next to Russ…. maybe the craziest character in all of Las Vegas – John, super cool guy and another picture coming up below.
John (Joe’s friend) great guy, and it had been about three years since we saw eachother. Joe and John are part of a bowling league….and their team is just finishing up the season….AND…their team is currently first place out of 16 teams…all handicapped, but either way there’s people hitting 300 every once in a while in the league. DAMNNNNNNNNN!!!!!
Joe throwing out high-fives after busting another strike! Some of you may not remember, but Joe has actually appeared on a few different iHaveUC videos. he was gracious enough to host me at his palace a few times before, AND he is the guy who convinced me to take part in the Crohn’s and Colitis Foundation of America’s LAS VEGAS HALF MARATHON. Muchas Gracias sir Joseph!
Alright…the last bowling pic…here’s John showing off some Vegas Creepy Guy Form! (what up John!!!:)
we’re big fans of taking pictures when we cross into new states….anybody else doing that???
When you are going from Vegas to Zion National park…you go through Arizona and then into Utah…Pretty cool drive once you get to Utah in my opinion
Come on now….how awesome of scenery is this here in Utah????? Crazy… You see I wasn’t lying when I said we’ve been tripping balls no mushrooms needed!
Almost to the campground for the day in Utah near Zion National Park
Just got to Zion!
Zion National Park, forgot exactly where in the park…but they have little buses that rumble you all around. And yes, there’s bathrooms spread throughout the park in case you need to drop a stinky one. And awesome picture taking…and some wild turkeys rumbling around too.
Michaela and I in the wind
Michaela and I hit up a short couple mike hike up Watchman’s Trail in Zion on our second day. Some nice wild flowers were starting to come out and about and not many people on the trails to worry about.
Not sure what I’m doing, not taking a crap or anything, but geeze, don’t the rocks/giant crap balls looks kinda Mars-like??? After Zion, we wanted to hit up Bryce Canyon National Park (which is awesome and our favorite so far in terms of spectacularness…) But since the park has limited campsites, we stayed about twenty miles away at Kodachrome State Park in Utah. Not a bad option at all minus the high winds. This place has nice free showers, which are hot as hell. And some good hiking trails and friendly folks running the place. Great tasting water all around and a super nice deal at $14 per night.
Michaela with an awesome background of hoodoos and doodoos at Kodachrome State Park, Utah. (Hard to tell, but its super windy here! maybe 20-30 knots)
once again…we had to take a picture. This time, they have a little stand you can actually set your camera down on to shoot your picture…and lucky enough…the wind didn’t end our camera’s life that day!
Well…this is what you may look like driving round Bryce Canyon National Park. It is a MAJOR TRIP SHOW amigos
Getting the toes wet at Lake Powell National Park…the reality is I chickened out and didn’t go in much futher…
Antelope Canyon is pretty trippy once again. this is actually a canyon that has been carved out by running water over the many many many years. The Navajo give guided tours up the canyon (not cheap) but it was highly recommened by my immunologist buddy and his immunologist wife in San Diego so we hit it up. And happy we did. We took hundreds of pictures, some came out, others didn’t, but worth the 2 hour tour for sure. (Just outside of Page, Arizona
the end of the upper antelope canyon (basically that’s where all the water shoots out of…if I understood the Navajo Guide properly…)
I’ve skipped a few weeks with this picture here, but it’s time to get on the road and leave our friends who have super fast wifi here in Austin, Texas…so I thought another sunset watching picture is a good closer. And again, if there’s any preaching to be doing on this site, I truly think we could all benefit from taking some time off and getting in some outdoor relaxation/destressing. I know its not always easy to pull off with the hectic lives that so many colitis folks lead, but it is for sure possible. And, if the sun does go down where you live, and if you know how to get outside, or if you’re able to get a 5-10 minute break from your job in the evenings, I’d most definitely encourage you to get out to a spot where you can see the sun go down (or up). Just might give you that extra relax feeling that helps you calm your system down a few more notches. I’m most definitely convinced that our immune systems are happier when we can remove some of the unnecessary stress that we all come in contact with.
That’s all for now.
If anyone’s wondering how I’m doing UC-wise -I’m medication free and feeling good(1-3 craps per day) hoping this continues for all of the road trip and expecting it to. But, if things go south, I’ve got some new ideas that I’m thinking about busting out to test…
I’m super pumped for some new stuff that’s going to be coming to the website in the very near future. As many of you know (or at least 5,000 of you who are on the newsletter) yesterday we started the Pregnancy and Ulcerative Colitis survey. And I’m super happy to say that over 80 women have been super kind enough to share your experiences on the topic. In just a few more days the survey will be closed and when I get some good internet again, I’ll get all the answers compiled and posted back to everyone on the newsletter.
Also, for those of you who are wondering…I receive new stories from readers of the website daily, often multiple stories each day. And when I get to some wifi internet spots, like where I’ve been the past few days here in Austin, Tex Land, I get the stories imported and published to the backend of the site. I like to spread the stories out, and by that I mean having one (sometimes two) new stories posted each day. So…if you send in your story (and big fat pat on the back to those who include a picture!!!) and are wondering why it is not appearing instantly…no need to send me an email. I do get all the stories, and they almost always get published (unless they are obviously business/marketing/spamish related). It just can take a few days or sometimes weeks depending on how many are already in the queue. But, I’m able to schedule out stories, so there will be new ones posted for the forseeable future, even when I’m out on the road.
AND, in terms of commenting on the website. The comments that people leave for others’ stories is really important. And for those of you who regularly leave comments (and there’s hundreds of you!) that is super cool. The reality is that less than 1 in 100 visitors of the site leave comments, but that’s OK since there’s over 2000 people per day visiting and reading stories. One thing you all should know if you’re interested in leaving comments, well maybe a few things:
if you are leaving your first comment, it will be held in “moderation” until I approve it. AND, that may take anywhere from a few minutes to a few days. Just depends on if I get internet reception where I’m at.
if you leave a comment with a website link in it, it will also be held for moderation. this is to prevent spam comments from hitting the site and wasting your time. So you know, the automatic spam filters work pretty darn well, and weed out over 1,000 SPAM comments daily on their own. But, they are not perfect. and from time to time, they weed out a valid comment, and yes, that sucks a big fatty. But, overall, I’m super pleased with their work and you should all be too. Seriously, we don’t want to be reading about Viagra does this, or Viagra does that all day long do we.
So please be patient if your comment does not appear instantly, and if you leave out website pages in your replies, it will have a much better chance of getting through and getting posted
Lastly, on this topic of comments, I’ve been delighted to see the back and fourth of people over the years on the site. If you folks use other websites, you’ll probably know that comments is a pretty big part of every site, and a place where things can either stay on topic and be a positive, or get off topic and get way out of hand. I think that of the nearly 15,000 plus comments on the site, only a SMALL handful, (like three or four) i’ve ever been asked to remove. THAT’s FRIGGIN INCREDIBLE UC’ers! And I thank each and everyone of you for that. My life would be a royal pain in the ass if I was being asked to remove comments all day long…
I’m pretty sure this ramble has gone on long enough, and Michaela just asked if I have even looked into the potential campgrounds we could stay at tonight…(and the answer is a big fat no as you might have guessed) so time to get crackin.
I wish you all the very best, especially the newly diagnosed UC’ers who are just getting past your first flare up, or getting used to what life is all about with Ulcerative Colitis.
I wish the very very best to anybody who has decided to take the plunge and have colon removal surgery. That is a very big step as you know, but one which so many UC’ers from all over the world have done and been super happy with. (Again, read the surgery survey if you think I’m bull crapping you.) Or take a peeky at our boy Curtis who is unfriggin believably dopeishness out in Sunny San Diego.
Bev, guess what senorita…I wish you the best you Canadian you (I do hate your hockey team…but that is a totally different story). You are just what this website needs more of.(and there actually are many folks here like you) Just nobody else who has left 1,143 comments…That’s more than me!!! And for anybody who wants to read Bev’s stories…here they are: Bev’s Stories!
Not sure where, but I hope to see some more of you soon on the road(best part of the trip by far),
PS: if you want to get the Pregnancy and Ulcerative Colitis Survey Results, which will be coming next to the newsletter Group, sign up right now. Newsletter Sign Up
PSS: if you haven’t checked out the medication reviews pages yet, you for sure should if you’re interested in what other Colitis patients have to say about medications. You can even leave your own reviews as well. There are links for Prednisone, Remicade, 6-MP, Lialda, Asacol, and more. Here’s the link to those: https://www.ihaveuc.com/category/reviews/
PSSS: if you don’t like your GI doctor, or are looking for a new one…there are now over 240 GI doctors listed and reviewed by fellow UC’ers on the site. Here’s the doctor reviews page. And if you want to add your own doctor to this list, if he/she is not already listed…go ahead and do that here – add your doctor.
So I like UC’ers. That’s been going on since 2009 I’d say.
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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