This brings me joy.
This brings me joy.
A great video on what life with Scleroderma is like. I think she does a powerful job of describing the disease in an understandable way, what it’s like going to doctors and them not knowing or recognizing it, and the realities of vital drugs with side effects that are brutal.
The drug she mentions, methotrexate, is one that Noah was on for a little over a year. He’s our six year old son who has localized scleroderma on his face; it started showing up when he was three, but doctors were unable to diagnose it until he was four and a half. It’s the preferred treatment (even though not designed for this use), but ended up being too rough on Noah’s liver and body so we had to stop a couple months ago before we could ever get him to the dosage levels he needed.
June is Scleroderma awareness month. Share the video to help build understanding!
I was just talking with someone the other day about the subtle expectation we tend to have that given enough resources, anything can be fixed, including our health. He mentioned how we always think doctors know everything, but one his friends (a doctor) admitted he was faking it half the time. I laughed and said that’s my own number one rule in first aid emergencies – looking confident, authoritative and in control. The last thing I need is an injured teen panicking, that will only hurt them worse. So I act like I know what I’m doing and hide any fear that I’m feeling (I am first aid certified, so I’m not faking my response).
But it is a strange thing when you realize the people you assume can help might not be able to, when you start to lose some of that confidence and naive trust. Realizing there are some things doctors just can’t do much about is a disconcerting and scary prospect.
When Noah was finally diagnosed with localized scleroderma, it was a relief at the time. We had spent a year and a half trying different doctors, treatments and tests trying to figure out what was going on with the skin on his face with no luck. Having a diagnosis was something we could act on, and of course, being close to experts meant we were golden. Especially when he responded well initially to treatments.
Then the treatments stopped working and started hurting him. So now we’re trying something else, but it really doesn’t seem to be working. It’s a frustrating reality to have sinking in more and more; this disease does not have a cure. Doctors don’t know everything about it. The experts and top brains in the scleroderma field are still experimenting with treatments. The best luck they have had are with medicines designed for other conditions and diseases that just happen to slow down or stop the progression. Unfortunately, it’s a rare disease that takes years and years to run trials on, which puts it low on the priority list for funding research.
It’s hard to be patient. When the best you can hope for is something to halt the scarring and tissue deterioration, without hope of the damage healing, time lost on ineffective drugs just results in accumulating scars. I made the mistake of Googling ‘localized scleroderma’ the other week to try and find a catchy image for a blog post. It was a terrifying and not at all what I had intended to find. It was the first time I had seen graphic images of Noah’s condition in full force.
June is Scleroderma Awareness Month. I would encourage everyone to visit and like the Scleroderma Foundation’s Facebook page to learn more about this disease. You can find my other blog posts on my son Noah and scleroderma here.
Holland Strickland, the casting director in charge of casting for Biggest Loser posted the following on Facebook – including the dates and cities for Biggest Loser open casting calls:
#BL14 CASTING HAS OFFICIALLY BEGUN!!!
CASTING CALL CITIES:
- JUNE 16: LOS ANGELES CA
- JUNE 23: ATLANTA GA, CHICAGO IL, MIAMI FL
- JUNE 30: DETROIT MI, KANSAS CITY MO, PHOENIX AZ
- JULY 14: PHILADELPHIA PA, RALEIGH NC, SALT LAKE CITY UT
- JULY 21: CLEVELAND OH, DALLAS TX, SAN DIEGO CA.
We hope to see you at a casting call near you, however, if you cannot attend a casting call then BE SURE to send us a video audition! We watch ALL videos that come in by the deadline! Even if you attend a casting call it’s a good idea to also send an audition video to double your chances! We will be updating our website www.thebiggestlosercasting.com this week with pre-registration, casting call information, how to make a video, deadlines, and all other important information…we will announce when it goes LIVE! Our casting team promises to do our best updating you throughout the casting process on www.thebiggestlosercasting.com, twitter.com/blcastingteam, and Facebook.com/biggestlosercasting!
Please read our prior tweets, FB posts, and website FAQ before asking questions that likely have already been answered. We appreciate your cooperation as we may not able to respond to every single tweet, email, or Facebook post. Most importantly, there will be MANY rumors you will hear by reading other potential candidates posts, tweets, blogs, etc…unless you hear it straight from the BL14 Casting Team then it may not be true. The BL14 Casting Team should be your go-to source of casting information. Throughout the casting process we suggest avoiding driving yourself crazy by listening to all the speculation by other candidates as it may cause unnecessary self-doubt, depression, emotional eating, etc…and as you know we want to promote as much positivity, healthy lifestyles, and an overall fun and exciting casting process for everyone involved! Last but not least, if you are considering auditioning but are on the fence, we say GO FOR IT! EVERY SINGLE CONTESTANT that has ever been on the show was on the fence at one point and never thought we would pick them…now here they are living the new and healthy life they always dreamed of! With that we say…WELCOME TO BL14 EVERYONE! SIT BACK, RELAX, and ENJOY THE ADVENTURE YOU ARE ABOUT TO EMBARK ON!
-The BL14 Casting Team
Michelle Aguilar, the season six winner of Biggest Loser, wrote a great book, ‘Becoming Fearless: My Ongoing Journey of Learning to Trust God.’ What’s even better? It’s free for Kindle for a limited time! Grab it while you still can!
Click here to go grab it!
And on a side note, I love that she did an ‘I am second’ video. Powerful stuff!
Biggest Loser is getting ready to start casting for season 14! Casting calls will be happening this summer and will be posted soon on the Biggest Loser casting website. Basically, this post is a collection of tips I’ve written based on my experience making the cast of season three, as well as some links to casting advice I don’t think you should miss:
One of the questions I hear a lot is about money … how do contestants afford to be away from home and work for months at a time? I don’t know what it is now, but when I was a contestant there was a $500 a week stipend for cast members on the ranch. When you received the check you could cash it and spend it, send it home, save it, whatever. All airplane tickets, hotel accommodations, etc., for the contestants and potential cast members are taken care of by NBC, and during the casting process it self there was a $50 per diem to cover food costs.
Another question is timing; typically a season lasts for about 8-9 months. About four of this is spent in filming; if you last all the way until the final three or four, you could be away from home for as much as four months or so. Once the ranch filming wraps and the last few contestants are sent home, however, there is still another four or five months that all the contestants have to continue losing weight until the finale. In addition, potential cast members are flown out to California a couple weeks before filming begins for the final round of casting, medical checkups, psychological evals, etc. NBC brings out more people than what they need and the cast is not finalized until filming literally begins. People have been cut at the last minute and replacements flown in with hardly any time to spare. Nothing is in stone until it’s on camera!
When will you hear from Biggest Loser about your video? There is no way of knowing. I heard back a few weeks after I sent it in, but even after that it’s a big waiting game. If you get a phone number or email from a casting direction, definitely drop them a line/call every couple weeks to find out if you’re still in the running or what’s going on. Schedules and plans change almost every day, so it’s easy to get lost in the shuffle. If you don’t hear back within a month I would think your video didn’t make the cut. That doesn’t mean you can’t send in another or visit a casting call – it’s just up to you!
Finally, here’s my video application tips! This is by no means a recipe for success; it’s based on my video application and the conversations I had with casting directors out in LA in between things. I was pretty curious about the whole process so I was pumping them for info even after filming began. I’m such a nerd!
Remember, enjoy the conversation here and know that I will never compromise your anonymity – not to NBC, 3Ball, Casting Directors or anyone. You can post anonymously, or you can leave your names and contact information … just remember that NBC likes to be the one announcing their cast for the show, so if you start identifying yourself publicly as a finalist, you’ll probably find yourself eliminated from the casting process. Be aware that casting directors do check in at my blog to see what people are saying, get a feel for what questions are going on out there, and sometimes to give us updates. Good luck to everyone … and let me know if you make the show! I get a kick out of hearing about the different contestants that have hung out on my blog before making the show!
So everything got changed up on our six year old, Noah last week! Sheesh …
You can read some of my previous posts about Noah and his health challenges (Scleroderma and Ptosis) by clicking here.
But back to the point. Basically, we got called into the doctor’s office because Noah’s latest round of blood work came back bad – we were told to stop giving him the medicine and come in for a new plan. For the last year and a half or so Noah has been on one drug; originally orally, but then through weekly injections, to try and stop the spread of the Scleroderma. At first it worked. Then it stopped working. And then it became toxic to his body. For the last several weeks he’s been nauseous and on the verge of throwing up, and then the blood work came back revealing the medicine was at damaging levels in his liver. This was frustrating because he was on less than a third of the dose the doctor eventually wanted to get him to, and with the Scleroderma noticeably spreading and damaging both his skin and the tissue underneath, we’re all very concerned.
So now that the preferred treatment is no longer effective (and I believe it’s the only one they’ve actually completed a successful trial on), we’re on to a new drug. Noah was happy because other than the monthly blood work, this one is oral so no more home injections. Unfortunately, it tastes awful, so it took him a few days to get used to the twice a day dose. He’s also on a steroid for the next six weeks to jump start the drug, so at the moment he’s getting various medicines three times a day (we can’t do them at the same time because of the different food/no food stipulations), which has him thinking about it a lot more than when he was on a once a week injection.
As a parent, the last six months have been disappointing to say the least. It seems like each visit has been bad news in some way. The disease continues to spread. We can’t give him enough medicine. The medicine goes from being helpful to toxic. We’re taking aggressive steps with potentially bad side effects. And all this is just for the hope of halting the spread of the disease. There is no cure. And he won’t heal where it has already done damage – the only prospect there is plastic surgery when he’s an adult. Even the medicines we try aren’t actually designed for Scleroderma – for the most part they are actually intended for organ transplant recipients to help their bodies not reject the new organ. They’ve found by significantly upping the doses in patients like Noah they can slow down or stop the spread of the localized Scleroderma. It’s even strange going to the pharmacy; because these drugs are so rarely used, they always have to special order for us. It’s disconcerting to be recognized at all these places (the pharmacy, the blood work lab, the doctor’s office). We’re there a little too frequently!
All that to say, keep praying for our son. We’re only a week into this new treatment plan and we’re hoping when we return to the doctor in a month that we’ll hear something good.
Today was Noah’s monthly trip to the hospital for his blood work. Because the medication he’s on for his localized scleroderma is powerful and has the potential for side effects, his blood has to be monitored. The hope when we began a year and a half ago was that there would be enough margin of safety in the results that he could eventually dial back the frequency to every few months, but unfortunately his results have been consistently borderline (on the safe side of the line, thankfully) that we’ve had to keep the frequency high.
Anyway, we’ve got it down to a routine. This keeps it predictable for him and gives him an air of control, and even somewhat special (he’s the only one of our kids allowed to play with my phone, and only when at the hospital; he gets a milkshake, stickers, etc., and his brothers are jealous – little things that are a big deal for a six year old). So today we walk in to the needle room and an older teen was on one of the couches getting prepped to have blood work done. He saw Noah and said something to the effect, ‘oh man, that little guy is going to be crying.’
Three of the four nurses immediately responded with comments like, ‘Him? No way, he’s the best at this.’ ‘Noah’s a tough guy, he never cries.’ ‘He always does better than everyone.’ I’m not sure, but I thought I saw Noah get a bit of a swagger on his way to his couch.
I was grateful for how they all pumped Noah up.
I was also sad that he’s there so often that in a hospital that treats people from the world over, and in the blood work lab where there is always a massive line of people and I can’t fathom how many they see in just one day, that most of the nurses know him and remember him.
We fired up the grill for the first time in 2012 tonight … one of my favorite parts of summer. I love burgers. A lot.
Here’s the problem; a typical fast food burger or restaurant burger can run 800-1200 calories. Crazy land. Doing a regular burger at home, with a great bun, and cheese, can still run around 500-600 calories at a minimum. Add a hundred calories to that if you like mayo on it instead of ketchup. That’s my entire meal calorie count and I’m a two burger kind of guy.
Switching to turkey can cut the meat calories in half. Using the 97% fat free can result in a patty around 100-200 calories (depending how large it is). I love easy and the Jenny-O frozen 1/3lb patty is only 160 calories. It’s huge, and tastes great.
Pre-sliced cheese ranges 60-120 calories a slice (once again, depending on size). That’s a lot of calories for just a little bit of food. Kraft has a whole line of fat free sliced cheese ranging 25-30 calories a slice. I use one slice, just for flavor.
The bun is also a big deal. A tiny regular bun is around 110-150 calories, but it’s small. A man size bun ranges 180-250 calories. That’s a lot. Weight Watchers has a great, large bun that’s only 130 calories, but looks like one of the ones that has twice as many calories. It’s also whole wheat, and full of dietary fiber. Good stuff.
Going with those three options creates a large burger for 320 calories. If I have it handy, I’ll load it up with vegetables – the calories are almost negligible, makes it huge, and adds a ton of flavor. A little bit of ketchup, mustard (almost calorie free), or fat free mayo, and I’m done. If I budget my calories for the day well, I can have two burgers and then for my side either a salad or steamed veggies. That’s a MASSIVE meal for around 700 calories. For a guy my build, that’s a WIN. I’m stuffed, and for less calories than one traditional burger.
Not to toot my own horn, ’cause I’m just not that type of guy (riiiiight) … but …
Good Friday just became Awesome Friday.
I hit a big milestone in my current weight loss endeavors (I started in January), sailing past the 50 pounds lost mark this morning (I dropped several pounds, so total loss is at 52 lbs). It felt good.
There have been a couple things different this time around – really in a lot of ways the first time I’ve been doing all this right since I left the show. I have two different groups for accountability (a competition, and a bunch of other Biggest Loser alumni), I’ve been counting calories and eating healthy, and I’ve been exercising regularly for about five hours a week at the local YMCA.
Which adds up to me losing weight at a consistent pace, feeling better, fitting in my ‘thinner’ clothes, and feeling a real change in my endurance levels.
I actually had to start changing up my workouts at the YMCA this past week. I had been just walking aggressively on the treadmill, steadily increasing the pace and the incline to keep pushing myself. However, I’ve started to reach the limits there, so now I’m starting off on the elliptical to get my heart rate up, then switching to the treadmill to finish the hour. Currently I’m up to 15 minutes (next workout I’m going for 20), then over to the treadmill. Eventually I’ll be doing the whole hour on the elliptical, then when that gets to easy I’ll start off jogging and then switch to the elliptical (that’s how I continually upped the intensity back in my Biggest Loser days).