My first visit to Vanderbilt was very promising. The visit with Dr. Wilfong was scheduled for an hour and we ended up going over. She asked many detailed questions and did a thorough examination. She had me do a pulmonary function test while I was there and ordered some lab work.

Dr. Wilfong wants me back in a couple of weeks to have more tests done including an echocardiogram, CT scan of my chest, and MRI of my thighs. She wants to make sure she “dots her i’s and crosses her t’s” since myositis can affect many areas. She also wants to make sure I don’t have any other conditions going on besides Dermatomyositis.

The plan for now is to double my dosage of mycophenolate (Cellcept) as the dose I’m currently on is not enough. She feels fairly confident that increasing this medication will help me feel better. With myositis, it is important to get it under control as soon as possible as this disease can attack the heart and lungs. Once that happens, it’s not reversible. This is one reason I decided to head out of town as my condition just hasn’t been under control and I wanted to see someone with more experience. This has already proven to be the right move.

Some of the lab work that was ordered today has to be sent to Oklahoma and it takes 12-16 weeks to get those results. In the meantime, I will have other tests done and then see her in person again in March after the mycophenolate has had time to work. She encouraged me to reach out with questions and to let her know if I’m having further issues.

This is the second time in my life I’ve made a trip out of town to receive further assistance for a medical condition. There are doctors out there with much more experience who can help. If you’re dealing with health issues and you’re on the fence about going out of town for another opinion, I highly recommend doing it. You have to take care of YOU. Take charge of your health. You won’t regret it.

Unfortunately, I’m not a stranger to health issues. In fact, that is what ultimately led to my career in wellness in 2008. I know firsthand the importance of being healthy in body, mind, and spirit. Anytime I find an area of wellness (i.e. social, environmental, creative) where I am lacking, then I try to find ways I can improve in that area. It’s important to be balanced. It does take work and I’m far from perfect, but I won’t give up as I know being mentally and physically well are worth it.

Since my diagnosis of dermatomyositis last April, I have dealt with a whole new set of challenges. The symptoms of this condition are as mysterious as how it originated. While I am still practicing self-care and wellness in my life, the task can be arduous at times. I think one of the most difficult challenges I’ve endured is how my exercise routine has been curtailed. Having been athletic my entire life, my activity level has always been more on the extreme side. It’s what I thrive on. This has all changed since dermatomyositis crept into my life.

I try not to allow this illness to consume me, but some days are more difficult than others. I grow increasingly frustrated as time goes on, however, I’m not one to sit by and accept that this is my new normal. I am a former patient of the Mayo Clinic so I will never hesitate to go the extra mile, literally and figuratively, to receive the best care. I recently requested a referral to Vanderbilt and was told it would be mid-July before I could see a specialist. (This was one of the shorter wait times compared to other places I contacted.) Naturally, I was feeling very discouraged by this news. I thought there is no way I can wait this long to seek further care for this condition.

Fortunately, I have a very good friend who has a connection at Vanderbilt. To make a long story short, I will see a specialist on December 20. And, not only that, I get to see someone who specializes in myositis and is even part of a research team for this condition. Merry Christmas to me! Hope is the best gift I could ask for. I will make the trek down to Nashville next week and share my story with an expert. This is definitely the start of something positive and has given me hope as I close out what has been a taxing year. (Dr. Erin Wilfong is the doctor who will be seeing me: https://medicine.vumc.org/department-directory/Erin-M-Wilfong). So far my experience with Vanderbilt has been nothing but promising.

Praying I find answers and the proper treatment to help ease my symptoms which are innumerable. If you think about it, please send positive thoughts along next Wednesday morning. I will post another blog sometime after my visit to Vanderbilt. Happy Holidays!

While in Europe, I noticed an improvement in my dermatomyositis (DM) symptoms. This can be contributed to a few things: 1. My stress was lower while on vacation. 2. The weather was cloudy and cooler. 3. Food in Germany has stricter regulations meaning they don’t use all the additives and preservatives that we do, and fresh food is more readily available. 4. Europeans’ way of life in general is more relaxed and laid back. 5. I stayed very busy which kept my mind off my condition more.

Stress, warm weather, the sun, and diet all contribute to DM symptoms. Therefore, it makes sense why my rashes, muscle pain/weakness, and breathing issues were better while away. Since I’ve been back home, my symptoms have gradually started to appear again. The diet part is the most frustrating for me. When I see other countries with stricter food regulations, it upsets me that we don’t have these policies in the United States. Having these restrictions would be better for everyone’s health. While I try to eat healthy, whole foods, it’s not always possible either due to time or I lack the energy to prepare anything. I don’t think it should be necessary to pay more money for healthier food with fewer ingredients. In general, all food choices should have fewer ingredients and more whole, fresh options should be readily available for everyone.

My rheumatologist recently started me on a new medication to treat my condition. He was waiting to start this drug after my trip as it can make me more susceptible to illness. The new drug is called CellCept and is an immunosuppressant. It’s a much stronger drug than the Plaquenil that I am currently taking. It can take four to six weeks for it to take effect so I have to continue on the Plaquenil for the time being. The plan is for me to eventually stop the Plaquenil and taper off the prednisone. I am currently on 15 mg a day of prednisone and started at 60 mg/day back in April. It’s not a good drug to have to stay on long-term due to its side effects, so I will be glad to finally get off of it. Plaquenil is a drug which can cause vision issues. I recently saw my ophthalmologist to have several eye tests done since my vision has become more blurry since starting this drug. Fortunately, everything checked out ok. I will be checked again in February. I am also scheduled to have a bone density scan soon. Prednisone can cause osteoporosis for which I’m taking Fosamax for.

I am continuing to stay active but my activity level has been cut back greatly. The past two weeks have especially been challenging. The day before I headed home from my trip, I contracted COVID for the first time. Then, after my recovery, I received the flu and pneumonia vaccines. CellCept makes me more susceptible to developing pneumonia so this vaccine was necessary. The vaccinations caused flare ups: heliotrope rash on my eyelids, rash on my hands and knees, muscle pain, and breathing/chest issues. The same thing happened with the shingles vaccine, only worse. When I have flare ups, my activity level decreases due to not feeling well and having increased muscle pain and fatigue. I miss being able to exercise on a regular basis and being outdoors frequently.

I think the most challenging part for me is the trial and error with treatment for this disease. Since I work full-time, take care of my teenage daughter, attend graduate school, and have always lived an active lifestyle, it’s difficult to be patient in waiting to see what regimen works for me. I’m ready to feel better now. It still blows my mind that someone who’s healthy and takes good care of themselves would develop a condition like this. But, I will say that if I didn’t live a healthy lifestyle I know I would be much worse off. So, there’s that. They say patience is a virtue. This could end up being one of my most valuable traits when all is said and done. How’s that for looking on the positive side of things?

The 188th Oktoberfest was everything I expected and more. The trip lasted nine days which included traveling there and back, sightseeing in Munich, visiting Salzburg, Austria, Neuschwanstein and Linderhof Castles, the Oktoberfest, and Stockholm, Sweden. What a whirlwind! I could definitely tell I wasn’t in my early 20s anymore (the age when I last visited Germany). Between that and my dermatomyositis condition, I was completely worn down by day seven. Then, to top it off, I got COVID for the very first time. I had fever, chills, sore throat, congestion, cough, the whole works. (Thankfully, this happened towards the end of my trip.) After arriving back home, I spent a week in quarantine recovering. Now, that I am symptom-free and negative for COVID, my rheumatologist will start me on a new immunosuppressant drug which will hopefully help my symptoms of rashes and muscle pain. This drug will allow me to taper off the prednisone which has caused me many issues. So, stay tuned on my progress. Now, for more about fulfilling my bucket list goal . . .

The 188th Oktoberfest in Germany concluded on October 3 after 18 days. It was actually extended by two days this year so it would end on German Reunification Day. Even without the two-day extension, the festival reached a record number of attendees. As of Sunday, there were 7.2 million visitors. We could definitely sense this everywhere we went in Munich. (The Oktoberfest was cancelled in 2020 and 2021 due to the pandemic and there were 5.7 million visitors in 2022.)

Beer was sold by the liter and a total of 6.5 million liters of beer were consumed. (I contributed a ½ liter to the beer consumption.) Beer costs between $13.25 and $15.60 a stein. Beer sales were actually down and nonalcoholic drinks were up, particularly water, mainly due to the warmer temps. The legal drinking age in Germany for beer and wine is 16.

There was a total of 38 tents set up for this event with the largest being the Hofbräu tent which seats approximately 10,000 people indoors and in the outdoor Biergarten. The tents served a larger menu which included many German specialties. Chicken was the best seller and organic chicken was offered this year. The menu also offered a few vegan and vegetarian options. Of course, there were pretzels and other smaller food stands where you could grab and go.

The Oktoberfest is a popular “bucket list” item for many and I’m grateful I was able to attend and experience this once-in-a-lifetime celebration for my 50th. One other item on my bucket list is to attend the largest Carnival in the world in Rio de Janeiro, although, I may think twice on that as I’ve had my share of crowds for a while. I think hiking the Appalachian Trail sounds more my speed these days. #naturecalls#peacefulsetting Here is a video of my recent European journey: https://www.youtube.com/watch?v=waVohh67zo4&t=3s

On Saturday, September 16, I will embark on a journey that has been many years in the making. With all the challenges I’ve endured this year health-wise, I was beginning to think it wasn’t going to happen . . . again. In 2008, I planned a trip to the Oktoberfest in Germany which is on my bucket list. I had to cancel the trip at the last minute when my mom fell ill and ended up in ICU. Even though I have been to Germany twice (study abroad in 1995 and again in 1998 for work), I have always wanted to attend what is considered the largest Volksfest in the world. Now, that dream will become a reality 25 years later.

Equipped with a positive mindset about turning 50, bucket list goals have been the order of the day. Two goals included: traveling to all 50 states in the U.S. (completed in 2019) and finishing my master’s degree (EDC: December 2024). The original Oktoberfest in Munich is yet another bucket list goal. I decided the year that I turn 50 would be the perfect time to finally cross off this item on my list and celebrate abundantly. I was looking forward to turning 50 for a variety of reasons, one being that I was in such excellent health. At the beginning of the year, I decided that I was going to celebrate for 50 nonconsecutive days as part of my birthday celebration with the culmination being the Oktoberfest in Munich. While I was able to celebrate intermittently, some plans were sidetracked. Little did I know that shortly after I turned 50, my life would be turned upside down with major surgery and a diagnosis of a rare and debilitating disease. Just proves how life can turn on a dime even when you’re doing all the right things.

Life has changed drastically for me over the past few months. Unfortunately, this new diagnosis has limited my abilities but I refuse to let it take away this once-in-a-lifetime opportunity from me. Life must be lived to the fullest and pleasure shouldn’t be postponed. Having things to look forward to motivates us to keep going. So, while you can . . . take the trip, buy the shoes, connect with a long-lost friend, and do more of what makes you happy. Despite my decline in strength and endurance, I still intend to make the best of this time to celebrate a milestone. And, I get to do this with a long-time friend, a retired German teacher. I appreciate those who have supported me and cheered me on in this endeavor particularly my parents and brother who are no longer here. They are no doubt giving me the strength to move forward on this journey.

I look forward to sharing about our adventure nearly 5,000 miles away as we celebrate with the largest beer-drinking, lederhosen-clad crowd in the world. Bis später, und bleiben Sie dran. Prost!

I have been taking Plaquenil and Prednisone since my diagnosis in mid-April. I also take Fosamax and Protonix to offset the side effects of the prednisone. While prednisone can help with this type of condition, it is also what I call an evil drug due to it’s many side effects: hair loss, blurry vision, weight gain (particularly in abdomen), moon face, watery eyes, bone loss, the list goes on and on.

While these meds seemed to help at first, they are not helping long term. My condition appears to be worsening which is expected with this progressive disease. While the muscle weakness and pain are difficult, one of the worse parts about it is the breathing difficulties. When you can’t breathe, you generally don’t feel well. It’s difficult to feel like doing anything. I still force myself to exercise or else my muscles will continue to deteriorate. I am watching my diet and trying to focus on more plant-based foods. This is not 100%, however, as the steroids make me crave salty and sweet foods. The meds also take away my taste buds, so I naturally want to eat whatever tastes good. I’m also just too fatigued some days to make any meals which means I grab what’s most convenient and not always the healthiest.

Since stress is a big factor in my flare ups, I started practicing meditation on a regular basis. I utilize Headspace and work through a couple of sessions each night before bed. My goal is to start doing this during the day as well. I also had to eliminate certain activities/duties from my life to cut down on my stress. I’m doing everything I know to do to ease the symptoms. My rheumatologist plans to start me on a new medication in late September after I travel out of the country. The new med will make me more susceptible to infections, but will, hopefully, allow me to taper off the prednisone eventually.

It’s definitely a long road ahead. My plan is to continue my care with my rheum doc in Evansville, but I won’t hesitate to travel out of town as necessary to get the best care.

I have worked in the wellness industry for over 15 years as helping others live a healthy lifestyle is a passion of mine. I have always lived an active and healthy lifestyle and love to travel with my 15 year old daughter. Being diagnosed with dermatomyositis has definitely been a life-changing experience. This site is all about my health journey since being diagnosed with dermatomyositis. The purpose of my blog is to educate on this rare autoimmune disease for which there is no known cause and no cure. Dermatomyositis is a rare disease that causes muscle deterioration and skin rash. Symptoms include a red or purple rash on sun exposed skin and eyelids, calcium deposits under the skin, muscle weakness/atrophy, and breathing, talking and swallowing issues. There is no cure, but treatment is done to reduce the symptoms. The risk of developing various types of cancer is increased by 30% for people with this condition particularly within the first two years of diagnosis. Follow my posts to stay updated and learn more about this autoimmune condition.

With a new year upon us, there are many workouts and diets being advertised everywhere you look. At times, it can feel overwhelming with all the options out there.

I’m here to give it to you in simple, straight terms. You don’t need fancy exercise equipment or even a gym to workout in. If there is anything we learned from this pandemic, it would be how to be resourceful and resilient through change (maybe even a little bit creative).

There are numerous workout routines you can do from the comfort of your own home, many of which we provide on our YouTube channel. However, if you prefer a gym environment to workout in, be sure to visit the Ivy Tech Fitness Center to get signed up.

1. Full Body Workouts: https://www.youtube.com/playlist?list=PLf1WKsLjQc7TKLfTyOgyHNRZj9hDj3nEq
2. Beginner Workouts: https://www.youtube.com/playlist?list=PLf1WKsLjQc7THxYpIN8w1VPjkqTnvQ9u6
3. Yoga Classes: https://www.youtube.com/playlist?list=PLf1WKsLjQc7THxYpIN8w1VPjkqTnvQ9u6

Maybe you enjoy taking walks or riding your bike. Getting outside in nature is so beneficial to your mental health. Find a workout buddy to join you. The most important thing is that you’re staying active and healthy by taking good care of yourself. Don’t get caught up in all the gimmicks out there. It’s not necessary.

Another important thing to consider is not to be wrapped up into any particular diet. Many diets set you up to fail. Don’t make your focus on taking away from your diet, but simply adding to it. Add more fruits and vegetables, lean protein (beans, nuts, lean meat, etc.), and make sure you’re not skipping meals. When you’re hungry, eat. Eating unhealthy food is okay. Just do it in moderation and always add something healthy along with it (i.e. If you’re eating pizza, add some veggies along with it.)

It’s important to take baby steps to a healthy lifestyle. Don’t get all wrapped up in New Year’s resolutions. You don’t need a new year to make changes. You just need a healthy mindset and small goals to work towards. Put yourself first and focus on making YOU a better and healthier person.

And, remember, if you need guidance, the Ivy Tech Wellness Center staff is here to help you. We can coach you and help guide you in reaching your goals. If you have questions or wish to make an appointment, you can e-mail alutzel@ivytech.edu.

Here’s to a healthy and active new year!

2020 has been a year filled with challenges . . . politics, protests, and the pandemic, to name a few. I think it is fair to say that most of us have never witnessed events of this magnitude before, or care to again. Regardless of your opinions, I think most would agree that this is a year we would like to put behind us, perhaps even forget altogether. 2020 was a year filled with loss and sadness. Perhaps it was the loss of a loved one, or a job, a vacation, graduation, or the inability to interact with family and friends.  

The key question is, how are we dealing with these losses? Now more than ever, it is important that we take care of ourselves and each other and stay connected. We all have different struggles, some more intense than others. One of the most important things we can do is to be kind, kind and gentle with ourselves and each other. It is not the time to hold grudges or be envious of others. It is a time for forgiveness, love, and caring for one another. The challenges endured this year have caused enough stress and anxiety in our lives.  

As we move forward into the new year, let’s keep the focus on helping ourselves and each other. This emphasis on self-care is a way we can battle the obstacles that lie ahead, and return some normalcy to our lives. Everyone needs and deserves this, particularly the healthcare workers and those on the front lines of the pandemic. 

One way to practice self-care is to allow yourself the time to grieve, whatever the loss may be. Don’t be ashamed of it, but rather share it with someone. And if the loss is too fresh to talk about right now, consider writing about it. There are resources available in our community to help you cope with your losses. It is vital that you take advantage of these opportunities so that you can move forward in a healthy and healing way.  

While it is certainly not my intention to lecture to anyone, I believe that sometimes we need a reminder that as bad as things may seem, particularly for those who are grieving, hope and better times lie ahead. Here’s to a healthy and happy 2021! 

Mental Health Resources  

– Facebook: What Matters Most? Evansville; Resilient Evansville; Take Good Care of YOU! Instagram: @ivytechwellandfit

– Be Well Indiana (COVID-19 info, Resources, Mental Health, Support) – https://bewellindiana.com/

– National Suicide Prevention Lifeline: Call 1-800-273-8255 (confidential and available 24 hours a day) 

– Local Suicide Prevention Hotline: 812-422-1100 

– Crisis Text Line-Chat: Text HOME to 741741 

– National Domestic Violence Hotline, Call: 800-799-7233, TTY: (800) 787-3224, Chat: Text LOVEIS to 22522 

– National Addiction & Recovery Helpline – Call: 800-662-HELP (4357), TTY: 800-487-4889 

– Indiana State Department of Health COVID-19 Medical Call Center 877-826-0011 

– The Disaster Distress Helpline 24/7 English, Call: 800-985-5990, TTY: 800-846-8517
Chat: Text TalkWithUS to 66746, Spanish, Llama: 800-985-5990 (Llama y prensa “2”) Charla: Texto Hablanos to 66746 

– Mental Health America of Vanderburgh County: 812-426-2640 

– NAMI (National Alliance on Mental Illness) Evansville: 812-423-4333 

– Deaconess Cross Pointe: 812-476-8200 

– Southwestern Behavioral Health Services: 812-423-7791 

– Suicide hotline for LGBT youth, run by the Trevor Project: 1-866-488-7386. You can text it as well. 

– The Veteran Crisis Line: 1-800-273-8255 or you can text 838255. TTY: (800) 799-4889