From: http://www.scleroderma.org/site/News2?page=NewsArticle&id=8377#.WrVyY8hMFTY
“If I can help advance the word ‘scleroderma,’ I will do it in any way possible.”
Head to YouTube, search for Betsy Craig’s five-minute speech at Ignite Fort Collins (Colorado) 8, and you’ll quickly learn that this woman has a roaring spirit and a dynamic personality. At the Ignite event, Betsy shared her scleroderma story with attendees, giving them a brief glimpse into her diagnosis, her journey to find a good care team and how she’s living positively today. However, a decade ago, when scleroderma wasn’t yet in her vocabulary, things were much different.
In 2003, when she was just 38, Betsy started to experience black spots on her fingers, which doctors thought were gangrene. Doctors attributed it to Raynaud Phenomenon. “The pain was beyond excruciating,” she recalled. “I woke up in the night just crying out in so much pain.”
Finally, in Nov. 2004, Betsy was diagnosed with systemic diffuse scleroderma. She also has interstitial lung disease, which makes breathing difficult in the thin, high Colorado air. In addition, she has issues with her gastrointestinal tract that make eating and swallowing a challenge. At the time of her diagnosis, doctors gave Betsy just 18 months to live. She had a choice – put her head in the sand or put up a fight.
Even as the disease made it difficult for her to get off the couch or complete common chores around the house, Betsy learned to become a fighter. She saw doctor after doctor until she finally found one that understood her and her disease. She even weeded through massage therapists to help with her chronic pain in a similar manner. “I went through a lot of massage therapists. Finally, I found someone who understood chronic pain,” she said. “I found someone who wasn’t afraid of my body and who understands how hard my body is. If the health care professional didn’t get it, I moved on.”
Looking at Betsy today, you wouldn’t think that she is sick or that she could have a disease like scleroderma. But, she has come a long way in the past few years. While she relies on some traditional treatments, like her GI medications, she has found success with the use of alternative, holistic treatments, such as nutritional changes, massage, exercise and daily baths.
“I’m very thankful to modern medicine. Methotrexate helped save my life,” she said. “I took so many prescription medications for five years. I knew I needed to look at holistic methods. I didn’t want to be polluted with chemicals forever,” she said. **
**Before you begin any alternative treatments, remember to consult with your doctor. Each individual may respond differently to treatments.
Dietary Choices
Today, Betsy’s experience with scleroderma has influenced her professional career. She had made dietary changes that she noticed made her feel better. So, when she dreamed up the idea to start a company that would review nutrition for recipes and menu items, it just made sense. Betsy, along with her husband, co-founded MenuTrinfo, a company on a mission to make it easier for restaurants to provide nutritional information and have an impact on the country’s health.
MenuTrinfo works with clients across the country to review recipes for nutritional information, including how many calories are in a dish. The company also consults to help create meals that are good for kids or to provide policies and disclaimers. “We take recipes and we make them into calories. We do nutritional facts, not fiction,” said Betsy. “We want to be 100 percent accurate in the nutritional information that we provide.”
According to the Centers for Disease Control, about 4 to 6 percent of school children in the United States have a food allergy. Over the last few years, the Scleroderma Foundation has found that many people living with chronic illnesses, including scleroderma, have started to follow a gluten-free or other restrictive diet. Betsy and the team at MenuTrinfo can run an allergen report to pinpoint if any potential allergens are in certain menu items, such as wheat, gluten, dairy or nuts.
While Betsy isn’t personally restricted in what she can eat, she has noticed that altering her diet plays a role in how she feels.
Got a Favorite Restaurant?
One of the little known provisions of Obamacare (officially known as the Affordable Care Act) is that chain restaurants must post calorie counts on their menus starting in 2013. The goal is to help promote healthier eating habits and emphasize the dangers of high-fat foods.
“We know restaurants have been hesitating to make these changes,” said Betsy. “It’s a pain and nerve-wracking, but there’s definitely a groundswell from diners who want accurate information.”
Betsy and MenuTrinfo have helped clients that include AMC Theatres, Buca di Beppo and Rosati’s Pizza. If there’s a restaurant or venue that you think could benefit from having their menu reviewed, you can contact MenuTrinfo through its website at www.MenuTrinfo.com or call (888) 767-MENU (6368).
Overcoming the Challenges of Leading a Company
Earlier this year, Betsy was recognized as an emerging entrepreneur at the 14th Annual Bravo Entrepreneur Awards held by the “Northern Colorado Business Report” for her work on MenuTrinfo. But, even with accolades, leading a company with a national scope imparts its difficulties on someone who also lives with a chronic illness.
“This business entails a great deal of traveling. I have to be able to move my luggage through airports,” said Betsy. “That’s probably the hardest part. I go to all of these different airports and you have to walk forever to get to your gate. Jumping into a wheelchair is not my norm. But sometimes, the physical requirements and my own stamina make me move a little slower than my personality wants me to.”
“Betsy’s positive attitude and enthusiasm are an inspiration to others with scleroderma, and she doesn’t let it slow her down,” said Cyndy Besselievre of the Scleroderma Foundation’s Rocky Mountain Chapter.” In addition to building a successful business, Betsy has made significant contributions to the growth of the chapter during the last 12 years. She has served on the chapter’s board of directors, as a support group leader and helped form the Fort Collins, Colo., “Stepping Out to Cure Scleroderma” walk.
“Starting and developing one’s own business is challenging in and of itself but, add a chronic disease on top of that, and it just goes to show you what an amazing person Betsy is,” added Besselievre.
Since being diagnosed with scleroderma, Betsy has proven that she is a fighter. She has overcome the physical limitations that the disease has presented, and she has prevailed in her professional aspirations, as well.
“I always go at full speed. I just need to remember to take breaks,” Betsy said. “In this business, nothing scares me. No person. Nobody. I even went head-to-head with someone at McDonald’s.”
Wednesday April 4th (Day – 5) check into Prentice Women’s Hospital at Northwestern and begin the countdown to stem cell transplant with 5 days in a row of seriously nasty chemo. The point is to get my immune system to as close to zero as possible while still leaving a small amount in case for some reason my stem cells can’t be returned to me. (This is crazy highly unlikely)
Once at the airport, curbside service was absolute perfection and we wandered inside to see about getting me a lift to the gate area also known as a wheelchair. You see that airport is flippin huge and I was beat, totally beat. It was super simple to get a wheelchair and even set one up for when we landed in a few hours in Denver. I was happy to save the steps and let someone else get me there. Off we went. We were wiping through TSA precheck security just when I got the first notice, flight delayed. Not a shocker but a bummer, oh well an hour and 15 is not so bad.
We decided to head to the Red Carpet Club and try to relax and wait out the delay. What was just over an hour became close to 4. The wait was manageable but I was getting more and more exhausted by the second. Also for some reason the Red Carpet Club became much more like a local child care center with families with 4 and 5 kiddos kept rolling in. Each and every one of those young kiddos I looked at like they could give me the cold, flu or sickness that I simply could not afford. I kept moving away from them but it truly became a game of wack a mole. As soon as I got away from these 3 then 2 more would pop up right next to me.
The next day, I was given this amazing gift from the great folks I get to work with on a daily basis……What an amazingly thoughtful gift I am saving for Aprils’ phase 2 adventure.
Here’s is the icing on the cake…..While in the hospital (on day 14 since the chemo I got in Chicago as part of the mobilization and harvest for stem cells), my hair started to fall out. I was on a race to check out of the hospital so I could go home and shave my head. I swear I love God’s timing because if I have 3 things to focus on than no one thing becomes that big of a deal. I needed a haircut, oxygen and sleep in some sort of urgent and major way. I got all 3.
I have had experience handling the discomfort, pain and knowing that this too shall pass just like most women walking the face of the earth.
Let me get to what is happening now this weekend and the last few days for all of you who are following along with what I am calling my “journey back to health”. I began the shots on Friday. They are shots of a drug called Neupogen and it is a series of shots for the 5 days leading up to and including the morning of harvest of my stem cells. The drug helps get my stem cells to move around a whole lot more then normal especially into my blood system which is where they will pull them from on harvest day medically called collection. My harvest day is Monday Feb 19th.
With all these shots comes crazy side effects and I am still working on the side effects from the one massive dose of chemo they gave me a week ago. The reason they gave me the horse size dose of chemo was to begin the mobilization of my stem cell out of my bone marrow. So to be honest, the shots aren’t bad, they are sort of no big deal to take but the entire procedure, process and all the medications both to do things and to prevent things, that’s take some warrior energy for sure.
It began with the shots Rocky has to give me each morning to help my body increase stem cells to prepare for harvest. Its a powerful drug set out to do some magic in my body that will eventually work to my advantage.
Yesterday, Friday 2/9/18, during a serious Chicago snow storm, we headed to the amazing hospital to begin the real work of Step 1.
This is a Control – Alt- Delete process. A Betsy 2.0 not a new app or a faster drive but an entirely new re-set.
I am back in our gift of a condo for the evening, waiting for my daughter to get here on a plane from back east. My bonus son has our home all covered, cared for and well watched as he is calling that home this week. Waiting on yummy pizza from Rosati’s cause, well I can get Rosati’s here in Chicago, yesterday was National Pizza Day and I just didn’t trust my tummy.