🌿 Walking My Talk: A Nine Dimensional Wellness Day at Audubon 🌿

After two back-to-back IVIG infusions, I could’ve easily stayed home and rested—and some days, that is the right choice. But today, my body and mind were asking for gentle movement, fresh air, and connection. I intentionally chose a slower-paced guided hike at Audubon State Park… and it ended up being a full-circle wellness experience in all nine dimensions.

As a wellness coach at Ivy Tech, I teach students that true well-being isn’t one-dimensional—it’s the balance of physical, social, emotional, environmental, intellectual, spiritual, financial, occupational, and creative wellness. Today reminded me why I share that message so passionately. Even with chronic illness and ongoing treatment, I try to model the same approach I guide students through.
Practicing what I preach—even when my own journey has its setbacks.

🚶‍♀️Physical Wellness:
I honored my body by choosing movement that was gentle, achievable, and restorative. A guided hike instead of a high-intensity workout. Slow and steady, listening with compassion.

👩🏼‍🤝‍👩🏾Social Wellness:
Being with a group brought community and conversation—plus River decided everyone needed his charm today. Someone even offered to take our picture, which made the experience feel even more connected.

☺️ Emotional Wellness:
The quiet moments in the woods, the crunch of leaves, the sense of accomplishment after a hard week—it all helped ease stress and bring a little emotional clarity and calm.

🌲 Environmental Wellness:
Audubon never disappoints. Golden leaves, warm sun, and deer crossing our path—including one waiting for us near the museum when we returned. I even planted a pawpaw seed, a tiny act of giving back to the place that gives so much to me.

🧠 Intellectual Wellness:
The guide shared so many interesting facts about the ecosystem, wildlife, and trails. Learning while walking felt like fueling my mind and body at the same time.

🧘🏼‍♀️ Spiritual Wellness:
There’s something grounding and almost sacred about finding your breath in the forest—feeling connected to something bigger, slower, and more peaceful than the daily grind.

👩🏼‍🎓 Occupational Wellness:
Being out here reminded me why I love what I do. These experiences shape how I support my Ivy Tech students—showing them that wellness doesn’t have to be perfect, intense, or complicated. It just has to be intentional.

🆓 Financial Wellness:
Choosing a free guided hike was a beautiful reminder that wellness doesn’t always require a membership, equipment, or spending money. Nature is accessible and generous.

🖼️ Creative Wellness:
From taking photos to finding beauty in small things (like River posing on a tree stump or the pawpaw seed in my hand), the day sparked creativity and appreciation.

Today wasn’t about pushing myself—it was about choosing myself, in every dimension.
And River? He absolutely loved being part of the adventure (and the center of attention).

🍁 If you’re looking for balance, healing, or just a reset, I encourage you to explore the nine dimensions of wellness in your own life. Start small, start slow, start wherever you are—just start with intention.

Sometimes the most powerful thing we can do is simply show up for ourselves.

Living with a Rare Disease: The Reality Behind the Curtain

For the first time since I started these infusions in late June, I got my own private room. No curtain shuffle, no strangers chewing crackers two feet away — just me, a recliner, and dimming fluorescent lights. I think the nurses felt a little sorry for me (or maybe they just wanted me contained). Either way, I’ll take it. Hopefully, it’s also my last round at an infusion center — more on that later.

I share openly about my infusions and life with a rare illness not for sympathy or attention, but for awareness. Awareness shines a light on conditions most people have never heard of. It fosters understanding, offers comfort to others facing similar battles, and breaks down the stigma surrounding invisible illnesses. What you see on the outside rarely reflects the battles happening inside. Living with a rare disease is often isolating, and the toll on mental health is profound.

For me, that illness is dermatomyositis—a rare condition in which the immune system mistakenly attacks the muscles, skin, and sometimes other organs. The result is severe pain, weakness, fatigue, brain fog, increased risk of cancer, and many sleepless nights. No known cause and no known cure, just managing. Intravenous immunoglobulin (IVIG) infusions are considered one of the better treatment options, but they come with their own challenges. Symptoms often worsen before improvement is noticeable, and results can take months—even a year—to fully appear. Because this disease is so rare, there are still many unknowns. Much of what I’ve learned has come not from textbooks or even specialists, but from connecting with others around the world in online support groups who are walking the same path. That reality is both frustrating and, at times, disheartening.

This illness also forces me to miss out on much of what once brought me joy: social gatherings, exercising, traveling, and even treasured time with my daughter. By the end of a workday, I am often completely drained, and many evenings end in tears from the relentless combination of pain and exhaustion. Pretending to look “normal” in public is its own exhausting task.

In recent months, I’ve made the difficult but necessary decision to step back in certain areas of my life to prioritize my health. While challenging, it has also been liberating. Soon, I will begin home infusions with a company that specializes in rare diseases, and their compassion has already provided a sense of hope.

A key part of this shift has been recognizing the role of stress. Stress is one of the greatest triggers for setbacks, and I can no longer afford to give it space. I’ve learned to remove myself—mentally and physically—from situations and environments that drain me. I see people every day who put their health on the backburner, and for many years, I was one of them. Not anymore. I had to learn the hard way (many years ago) that chasing “success” at the expense of my health is not truly success. Helping others will always be important to me, but not if it comes at the cost of my own well-being. Boundaries have become essential. They may not always be well-received, but they are necessary.

The truth is, I may require infusion treatments for life. The hope is to eventually reduce them as my condition stabilizes. In the meantime, I am deeply grateful for the people who check in on me. While I rarely have an upbeat answer to give, their thoughtfulness reminds me that I am supported. These past two weeks have been some of the hardest yet, and I would be lying if I said I hadn’t felt like giving up more times than I can count. But thanks to the encouragement from my online support groups and the people who continue to reach out, I press forward.

This journey is far from easy, yet it is teaching me resilience, perseverance, and the importance of releasing what I cannot control. I may not be able to do everything I once could, but I do the best I can with what I’ve got — and that has to be enough. My hope in sharing is to raise awareness, reduce stigma, and encourage others facing invisible battles. Even in the darkest seasons, there is still space for hope, healing, and connection.

And as timing would have it, this Sunday is World Myositis Day — a chance to shine a light on rare diseases like dermatomyositis and remind the world that awareness matters. Even the smallest act of recognition can make a big difference. 💙

Rare, Remarkable, and Ready for Round Two

After two long months without IVIG infusions—and feeling the steady decline that came with it—I’m relieved to say that I’ll be restarting my Gamunex-C infusions on June 27 & 28. I’ll be going every other week, two days in a row, receiving smaller, slower doses that are gentler on my body and won’t produce as many side effects.

I had to advocate for myself, especially when my doctor initially stopped the infusions altogether. I knew I wasn’t doing well and continued to feel worse, physically and emotionally. But speaking up for yourself in the medical world—especially when you’re dealing with a rare disease like dermatomyositis—can feel overwhelming, even intimidating.

That’s when my guardian angel stepped in: an infusion nurse with over 40 years of experience, including more than a decade as the director of the Johns Hopkins infusion center. She now manages an online discussion board for patients receiving IVIG for various autoimmune and neurological conditions. The knowledge, resources, and encouragement I gained from her—and from that online community—were exactly what I needed to advocate for myself with confidence.

But getting here was far from easy.

One important thing she taught me: IVIG treatments often come with a “worse-before-better” phase. And she was right. After my first two infusions back in April, I felt worse for several weeks. It was discouraging and confusing—until I learned that this is a common response as your immune system begins to shift. Unfortunately, because of the two-month gap in my treatment, I’m essentially starting over. I expect it may be another tough road before I start to see improvement, but this time, I’m going in prepared—mentally and physically.

📸 In the photo I’m sharing with this post, you’ll see me and my loyal sidekick River in our backyard oasis. I’m wearing a shirt that reads “Rare but Remarkable,” and that message couldn’t be more fitting. Living with a rare disease means constantly navigating unknowns. It means advocating when you feel unheard. And it means continuing to hope—especially when the path ahead is unclear.

But I know this much: I’m not alone. And if you’re reading this and facing your own battle, neither are you.

Keep asking questions. Keep learning. Keep fighting. Your voice matters—and so does your healing.

Detours on the Road to Healing

If something rare and difficult can happen, it usually finds its way to me.

First, I was diagnosed with a rare condition that affects about 75,000 people in the U.S. Then, after starting a treatment protocol that seemed to help, I finally got back to being more active last year. Things were looking up—until the treatment stopped working.

From there, a new plan was put into place: IVIG infusions, which have a high success rate for people with my condition. I had my first two infusions on April 25 and 26. At first, the side effects were pretty standard—flu-like symptoms. But then, the day after my second infusion, a rash appeared on my arms. It slowly spread to my legs, sides, stomach, and neck. It looked dramatic, but thankfully didn’t itch or hurt.

I reported it to both my local doctor and my team at Vanderbilt. Neither had seen this type of reaction before. I was referred to dermatology for a biopsy, but by the time it happened, the rash had mostly cleared and the results came back inconclusive.

Rheumatology scheduled me to be seen virtually on May 28, but I refused to wait that long to receive answers. I found out—through a casual MyChart message from the nurse—that my treatments had been stopped without any prior discussion. No call. No heads-up. Just, “You won’t be going to those appointments.”

Naturally, I had questions—lots of them. I asked for the appointment to be moved up, and had a virtual visit this afternoon. I explained that I’m active in multiple Facebook groups for people with myositis and for those on IVIG. One of the groups is moderated by a nurse with 40 years of experience, trained at Johns Hopkins (which happens to be the top treatment center for my condition).

Through that group—and research—I’ve learned that skin reactions to IVIG are documented and not typically a reason to stop treatment. In fact, I even sent my doctor some of those articles. I told her I didn’t want to give up on IVIG just yet.

To her credit, she agreed to refer me to an allergist/immunologist to help determine if it’s still a safe option. Often, skin reactions can be managed by slowing the infusion rate or spacing treatments out over a week. What likely happened in my case is a hypersensitive reaction, which often improves with continued treatment.

In the meantime, though, all IVIG is on hold. One of my current meds is being increased, and we discussed adding another if needed. For now, I’m stuck with the pain and weakness until we sort this out.

I did not see this coming. I had so much hope for these infusions—and despite all of this, I still do. But this week has been one of those where I just want to scream “FFFFF*CCCCKKK!!!”**

I’m exhausted. Exhausted from advocating for myself constantly. Exhausted from having a condition so rare that most local doctors don’t know how to treat it. Exhausted from my doctors not communicating with each other. Exhausted from having to rely on Facebook groups for accurate, helpful information.

At this point, I’m seriously considering going to the Cleveland Clinic or Johns Hopkins if I can manage it. They have top-rated myositis centers, and I’m starting to think that level of expertise may be the only way to truly move forward.

Thanks for letting me vent. I needed it.

Changing Course

I felt it was the right time to share an update on my health journey. It’s been two years since I was diagnosed with dermatomyositis, and unfortunately, the treatment regimen that had been keeping my symptoms manageable is no longer effective. Over the past eight weeks, I’ve experienced a gradual increase in pain, weakness, and fatigue.

Recently, I underwent two MRIs—one of my thighs and one of my upper arms and shoulders. These areas are commonly impacted by this muscle disease and are more clearly visible through imaging. These scans were necessary so that my medical teams in both Evansville and at Vanderbilt could evaluate my condition and determine the next steps. The results confirmed progression of the disease.

I usually gauge how I’m doing based on my ability to stay active, and lately, I’ve noticed a significant decline in my exercise tolerance—something that’s hard to ignore. That prompted me to reach out to my doctors, advocate for myself, and push for better communication among my care teams—an ongoing challenge I’ve faced.

We don’t yet know why my current treatment has lost its effectiveness. Unfortunately, that’s part of the unpredictable nature of dermatomyositis. I’ve also been under more stress recently, which certainly doesn’t help. It’s one of the reasons I’ve stepped back from following the news as closely—it’s simply too draining. I’m giving myself permission to slow down and focus on healing—self-care is at the center of that right now.

The next phase of my treatment will involve IVIG infusions. I’m hopeful this new approach will help stabilize things.

IVIG therapy is a treatment that involves infusing concentrated antibodies (immunoglobulins) directly into my bloodstream through an IV. It’s designed to help modulate the immune system and will be used in combination with one of my current medications.

Because insurance approval can take time, my doctors have made some adjustments to my current treatment plan in the meantime to help manage symptoms as best we can.

Once approved, I’ll begin monthly infusions—most likely at the Deaconess Gateway Infusion Center—which will take several hours each visit. I’ve heard encouraging stories from others who’ve undergone this treatment for myositis, so I’m staying hopeful. That said, like any medical intervention, IVIG can come with side effects, so I’m also praying for a smooth experience, especially in the long run. I’m grateful to work for an organization that values well-being and has made space for the accommodations I need during this chapter.

I’m hopeful that I’ll have more answers in the coming weeks. In the meantime, I’d be so grateful for any extra prayers or positive thoughts as we navigate the insurance process and move toward the next phase of treatment. I’m truly hoping this new protocol brings better results.

More than anything, I’m looking forward to feeling like myself again—being more active and doing the work that gives me purpose. That’s always been the heart of who I am. One bright spot through all of this has been welcoming River Nolan (my foster fail) into my life. His timing couldn’t have been more perfect, and I feel incredibly blessed to have this sweet soul by my side.

I’ll share more updates as I learn more. Thank you for taking the time to read and for continuing to send love and encouragement my way—it truly means the world.

Never Underestimate . . .

When I was in high school, my guidance counselor told me that I likely wouldn’t finish college. This was mostly due to my SAT score and the fact that I was quiet and not a standout. While I participated in sports and several extracurricular activities, I wasn’t considered what one might call “popular.” After being told something like that by someone who is supposedly “guiding” you, it’s only natural to want to give up. However, for me, it only added fuel to the fire.

I attended the University of Southern Indiana right out of high school. I was very active at USI in various clubs and organizations. I won scholarships and awards due to my grades and involvement at the university. I was also employed throughout my college career. I went on to graduate with honors in 1996 with two bachelor’s degrees. (Take that, Mrs. Buxton!) This was a huge confidence booster for me and helped me go on to find a good full-time job.

I have always believed that setting goals (bucket list goals and short-term goals) motivates, keeps you on track, and gives you something to look forward to. This is something I teach in wellness coaching. It’s about empowering yourself.

I set a goal for myself to get a master’s degree. Initially, this goal had more to do with furthering my career than anything else. I went about it the wrong way which is likely one reason I kept trying and failing. That, along with not having enough confidence I would succeed.

My first attempt at a master’s degree was through Indiana State University. I made it through half a semester and quit. Then, a few years later, I attempted a master’s through the University of Alabama. I completed one semester and quit again. My excuse was that life got in the way as I kept running into obstacles. I started thinking I wasn’t cut out for further schooling. The truth is life will always get in the way. You just have to learn how to balance it better.

I waited several more years before trying again. This was after I found a career I loved and was passionate about. I decided to make earning a master’s degree a bucket list goal and something to complete by the time I was 50. After losing my friend to suicide and my brother passing away at the age of 52, I realized that life is just too short. If I don’t do this now, it will never happen.

After much research, I found a program through the University of Missouri. In the fall of 2020 (during the midst of a global pandemic), I started classes to work toward a Master of Education in Student Learning and Wellbeing. I began this program with the mindset that I need to work at my own pace and realize that this is a long-term goal. Like my undergraduate studies, I wanted to do well. Throughout this journey, I wanted to practice what I preach so I made sure to continue exercising, eating healthy, and practicing overall self-care. Like a turtle, I learned that slow and steady wins the race.

Little did I know after I began this journey, I would encounter some of life’s greatest challenges. Not only was there a global pandemic, but I lost my father, raised a teenager, started a large produce garden and green space at Ivy Tech, underwent major surgery, started menopause, was diagnosed with a rare, debilitating muscle disease that affects brain function, underwent numerous medical procedures, made several trips to Vanderbilt Medical Center, was hospitalized twice, then in my final semester, Izzy my long-time fur companion, was diagnosed with aggressive cancer.

I had several minor breakdowns and wanted to quit taking classes more times than I could count. One of the things that kept me going was how engaged I was in this program and saw firsthand how much it benefited me, personally and professionally. This, and the fact that I knew if I didn’t finish this time, it was never going to happen. With my brain fog issues worsening, I knew this was my only hope of finally earning a master’s degree. So, I pressed on.

When I realized I wasn’t going to complete this bucket list goal by the time I turned 50, I learned to give myself grace. I was battling an illness that came out of nowhere and had to learn my new normal without giving up on school. This mindset is what got me through.

The third time became a charm. Not only did I complete 39 credit hours, but I earned a 4.0 GPA and nailed my capstone project. To say I’m proud of myself for pressing on is an understatement. I know my parents and brother would also be proud of this accomplishment. Not only was I the first person in my family to earn a bachelor’s degree, I am now the first to earn a master’s. (I must admit it’s pretty cool having new initials behind my name.)

It’s probably not very common for an online student to drive nearly five hours to attend their graduation, but I feel I owe it to myself. The weekend of December 13-15 will be the beginning of many celebrations for me. Life is short, celebrate every achievement.

One of my favorite quotes is by Audrey Hepburn: Nothing is impossible. The word itself says, ‘I’m possible.’ I definitely find this to be true. Never underestimate the quiet students (or employees). There is power in silence, confidence, and persistence. Boom!

Amy Lutzel, M.Ed.
University of Missouri
©2024 BlairPhotoEVV

Making Progress

It’s hard to believe my journey to healing from myositis began just over a year ago when I was first diagnosed. It has definitely been a challenging year full of ups and downs (but mostly downs). There have been many overwhelming days where giving up seemed so much easier than fighting – the sleepless nights, pain, hair loss, muscle deterioration, skin changes, cancer screenings, surgery, tests, appointments with rheumatology, dermatology, gynocology, gastroenterology, opthamology, pulmonology, cardiology, sleep clinic, and traveling out of town for appointments. This is the norm for anyone battling dermatomyositis. It is a life changing disease to be sure.

Most people know I have always been an active, outdoor person. When both of these things were affected, (not being able to be as active and having to avoid the sun), it really made me learn to never take for granted even the smallest blessings in life. I also had to learn how to remove the word “can’t” from my vocabulary. I’ve heard people in my myositis support groups discuss giving up on certain aspects of their life. They talk about never visiting the beach again and avoiding any outdoor activities. My response to that is that “you can’t stop living.” Yes, there are new challenges, but there are ways around it. You must press forward and still find ways to do the things you love. This is how you survive and thrive.

So, here I am a year later. I’m down 20 lbs so far (mostly prednisone weight), rashes are under control, pain is better, and I am getting more rest since starting treatment for sleep apnea. This is helping tremendously with my healing. I am starting to feel like the old Amy again. I have energy to clean my house (in small steps), mow my lawn, go hiking with Izzy, and ride my bike further. My bike rides used to be about 30 miles on average. Since I’ve been ill, the rides have been about three to four miles (which I am still grateful for). Recently, I rode 13 miles, the longest ride in over a year. My strength is coming back.

This lifechanging illness came out of nowhere and was brought on by a combination of factors, including: menopause, a virus, genetics, and stress. You could say it was the perfect storm. This is a lifelong journey and I have no intention of giving up. I have seen the benefits of persistence and patience and that health and wellbeing are definitely worth fighting for. While the mental and physical journey has been taxing, I am a firm believer that good things do come to those who wait.

Slow progress is better than no progress. The fight continues. (I am including photos from last summer to now and a photo from my most recent bike ride so you can see the progress.)

Heliotrope rash (eyelids) and facial rash gone.

Building Resilience at a Turtle’s Pace

I’m long overdue for updating my blog as it’s been nearly two months. I prefer to blog when I have more to blog about rather than just writing about random things every couple of weeks.

By the end of this post, the title should make more sense. So, hang with me.

Since my last post, I’ve had a few new developments. Since the drug Cellcept (mycophenolate) was not working well on my GI system, Dr. Wilfong at Vanderbilt, changed it to mycophenolate acid which is supposed to be more gentle on the digestive tract. Unfortunately, it is also much more expensive. But, if it works, I’m all for it. Initially, I was still having GI issues, but I think this may be improving (fingers crossed).

With dermatomyositis (DM) being rare and such a wacky disease, I have also developed two more medical issues to add to my list of ailments. I now have GERD (Gastroesophageal Reflux Disease) and sleep apnea, both caused and/or worsened from DM. YAY for me! So, in addition to my muscle weakness, pain, deterioration, increased risk of cancer, and rashes, I can now say I have these new issues. On a positive note, after having a sleep study done, I’m well on my way to getting a CPAP which should happen in the next few weeks. More than one doctor has stated that once I start this treatment, they believe my pain, GERD, fatigue, brain fog, and anxiety will improve. Oh, joy! I’m so tired of the fatigue and not feeling well, so I’m ready to get this show on the road.

On my first visit to Vanderbilt in December, Dr. Wilfong ordered a myositis panel (extensive labs for my disease). I had this done in Evansville, but it was sent off to a lab in Utah which produces fairly quick results. Dr. Wilfong wanted this panel done in Oklahoma at a myositis specialty center which is considered the gold standard. The only downfall is it takes nearly three months to get the results back. At my follow up appointment today at Vanderbilt, I found out that I tested positive for the antibody Tif1 gamma. This basically means that I am even more susceptible to developing cancer from dermatomyositis. I am at the highest risk in the first five years so this is when the majority of my screenings will be done. I will be tested for just about everything you can be tested for since I am at risk for about every type of cancer. Given that both my parents had cancer also makes me high risk. You might think this sounds like a death sentence, but honestly, I believe it to be another blessing in disguise. My doctors and I will now be more vigilant when it comes to cancer screenings and we could perhaps catch something early which could end up saving my life.

After seeing Dr. Wilfong today and discussing my progress, it has been decided to add one more drug to my cocktail. I will be going back on Plaquenil to help treat some of my joint pain which hasn’t been improving. It’s not uncommon to have to take several medications to get this disease under control (and it needs to be under control sooner than later due to the potential of damaging heart and lung issues). I am already eating very well, exercising (as much as tolerated), doing daily meditation, and working on better sleep. With this combination, I am hopeful I will see even more improvements in the next couple of months. I also found out today that I am down 14 lbs. My appetite has been down so that has made losing weight fairly easy. While I needed to take off some pounds (due to prednisone weight gain), it’s also not uncommon to lose weight from DM. I also feel better getting the excess weight off.

Lastly, I now reference back to the title of this blog, “Building Resilience at a Turtle’s Pace.” I brought up the topic of resilience because one of my elective graduate school courses I’m taking towards my degree is about building resilience and optimism. I’m learning just how resilient I am from all the various personal and professional trials I’ve been through in life. (If you don’t know what I’m referring to, I will just say buy the book as there will be one some day.) I’ve learned that resilience is like a muscle. The more trials you face in life, the more resilient you become. For me, this has been at a very slow pace which is kind of my lifestyle in general these days (like the pace of a turtle). Aside from these struggles, I still have grit and never give up. I am also pleased to announce I will be at my graduation on December 14, 2024 at the University of Missouri receiving my Masters of Education degree. I never thought this day would get here. Amy Lutzel, M.Ed. is how you will see my signature on all professional e-mails.

So, there you have it. Moving forward. Becoming more resilient. Happy to move at a turtle’s pace (for now) and just happy to be alive.

A Blessing in Disguise

I haven’t posted a blog in over a month and decided it was time for an update. It was a very busy and long January. After my visit to Vanderbilt on December 20, the doctor more than doubled my dosage of Cellcept since I wasn’t improving. Initially, I seemed to be handling the drug okay, but that changed. I started having severe GI issues (i.e. severe diarrhea, some nausea, abdominal pain, loss of appetite) that has gone on for nearly three weeks and continued to get worse. (I also have issues with lightheadedness and increased joint/muscle pain.) Dr. Wilfong at Vanderbilt didn’t think it was the meds as she thought I would have started developing symptoms sooner. She recommended that I see my primary care doc, so I did. He ran many stool tests which included checking for various bacterial infections. All tests came back negative. My local rheumatologist suggested we lower the dosage by a small amount to see if that would help. And, low and behold, my symptoms improved a little. It was always my gut feeling (no pun intended) the Cellcept was causing these issues, but I wanted the opinion of my doctors to make sure. I know my own body and have to listen to it and realize the doctors can be wrong at times. I spoke to a pharmacist who stated that this drug can most definitely cause these issues. I also discussed this with members in my online myositis support groups who have had similar issues. You have to constantly do your own research and be your own advocate which can be exhausting, but necessary.

I made a trip back to Vanderbilt on January 26 to have some more testing done. The doctor ordered an MRI of my thighs to look for muscle damage, a CT Scan to look at my chest and lungs, and an echocardiogram to view my heart function. These are all areas which can be affected by dermatomyositis (DM). These were mostly baseline tests and to make sure this disease hasn’t progressed to these areas yet. Thankfully, they have not. I know others who aren’t so lucky. The fact that this disease was diagnosed fairly quickly plays a huge role in this. I have Kim Heathcotte my dermatology NP to thank for this. She is the one who ordered the initial skin biopsies and referred me to a local rheumatologist with this diagnosis last spring.

DM is a disease where you have to be aggressive up front to prevent it from advancing. So, this is why Cellcept is a necessary drug right now. It’s just a matter of finding the right meds and the right dosage to get me in remission and feeling better. This is done through trial and error and much patience. One risk of this disease is cancer so I have to have various cancer screenings yearly for the next three years, then the percentage goes down. I also found out recently that menopause may have played a major role in developing this disease. They are finding a connection with hormones, but more research needs to be done. There is always new information coming out and new treatments, so I am hopeful there may be more answers down the road.

I admit there are days I am ready to throw in the towel as I get so tired of not feeling well. Then, I receive hopeful news like the most recent tests showing no advancement. And, aside from a few numbers being out of whack from the Cellcept, my lab work looks excellent. Knowing we caught things early gives me the hope I need to keep fighting. That, and the fact that I know my healthy lifestyle has benefited me greatly. I believe things happen for a reason. I know I am exactly where I’m meant to be and that good things lie in wait for me. I know the mental and physical health benefits of optimism so I am hanging on to that as much as possible. 🙂

Dermatomyositis is a very up and down disease. In fact, there are more down days than up days right now, so I most definitely cherish the good ones. The weather warmed up over the weekend and the sun came out which did wonders for me. Even though I wasn’t feeling my best, I made it a point to get out and hike with Izzy. Knowing that nature and animals always improve my mental and physical health, I knew I couldn’t pass it up. I bought some new hiking poles to use particularly on rough and hilly terrain. Between that and Izzy at my side, I did fairly well. And, you know what? It felt damn good!

Someone in my online myositis support group described it perfectly, “We are like test subjects because there isn’t enough research on this disease. We must be our own advocate and do our own research to make sure we’re getting the proper treatment. Some days will feel unbearable and we may feel all alone, but we must stay positive and love ourselves anyway.” I have learned that despite all the challenges, the important thing is to remain strong and know things will get better. I have to look at this disease as a curse and a blessing. An Ivy Tech student told me recently I was an inspiration. While I may not feel very inspirational right now, I do see this as a blessing in disguise. I have faith that the true blessing in all of this will appear when I least expect it.

Onward to 2024

I find it ironic how 2023 began with me looking forward to the year ahead as I would be entering my 50th year. After all, positivity is everything and usually has the best outcome. Not only would I be celebrating for 50 nonconsecutive days, but the culmination would be experiencing the Oktoberfest in Munich. While these are great milestones, I can’t help but think that my 50th year was not all I had hoped for.

I started the year in menopause with all it’s unwelcomed side effects. On top of it, I was experiencing other issues which were initially blamed on menopause. After developing flu-like symptoms after each workout session, rashes on various areas of my body, fatigue, and muscle and joint pain and stiffness, I learned I had dermatomyositis. This is a rare disease which can be brought on by a virus, vaccination, the environment, genes, or cancer. Stress can make the issue worse. This unexpected diagnosis has completely turned my life upside down and I’m still trying to figure out what my new normal is.

While I try to remain positive, it is very difficult some days. There is so much I’ve had to give up in the past year, and, with the unknowns of this disease it’s difficult to be optimistic. I was already living a healthy lifestyle as my career is centered around health and wellbeing. However, this diagnosis has made me focus more on areas of wellness where I can make improvements. Since my exercise routine has been curtailed due to my illness, I have been focusing more on my diet, meditation practice, and social life.

Unfortunately, this is a very expensive disease. Between the treatment options, doctors’ visits, medical procedures/tests, and diet, having a full-time job is crucial. The challenging part is that it is becoming more and more difficult to work full-time. It completely wears me out. I also struggle with getting chores done at home, cooking, and running errands. Exercise is a necessity with this disease (which causes muscle wasting), but exercise feels more like a chore than it used to. Learning what my limits are have been a battle in itself since this disease is always changing.

After being treated by a local rheumatologist for a few months, I decided to make a trip to Vanderbilt to visit with a doctor who has more experience treating this disease. Given how rare this condition is, I believe this to be a smart decision. Currently, more tests are being done and I have already learned that my LDH (lactate dehydrogenase) level is high which is something that was never tested by the doctor in Evansville. This is a sign of tissue damage. One of my medications has been increased, but I am having some unpleasant side effects and worsening of my condition which could be related to this med. Unfortunately, chronic pain only leads to being more depressed and discouraged, but I am still holding out hope. I am waiting to hear back from my doctor to see how she wants to proceed. I also see my general practitioner this coming week about being referred for a sleep study to either confirm or rule out the cause for some of the fatigue and brain fog I deal with on a daily basis.

One of the most frustrating things I’ve encountered throughout this ordeal are from people who talk to me about living a healthy lifestyle, particularly diet. This is something I already know and work on daily. I already know that sugar, flour, red meat, processed food, desserts, and fried foods are high inflammatory foods. Thankfully, these things aren’t a regular part of my diet so it hasn’t been too difficult in reducing these types of foods. I try to focus on gluten-free, dairy-free, vegan, and organic to avoid putting unnecessary chemicals in my body. I also focus more on food and supplements that fight inflammation. Unfortunately, with this disease it takes more than an extremely healthy lifestyle to go into remission. Medication is a necessity especially to keep it under control before it starts attacking things like my heart and lungs.

Another area of frustration is trying to explain to friends or family what I am experiencing. Many try to offer their advice without having any knowledge or understanding of myositis. I don’t expect people to know much, but instead to listen to me more. Venting and sharing is good for me so a listening ear is crucial. If you would like to know more about this disease, the Myositis Association is the most reliable source – https://www.myositis.org/?gclid=EAIaIQobChMIxrDtpKa6gwMVE87CBB1zkwF8EAAYASAAEgIfAvD_BwE.

Lastly, I get very frustrated with the environment we live in including the air we breathe and the chemicals found in our food and household products. I have already filed more than one complaint with the Food and Drug Administration with more to come on that. It frustrates me that we have to constantly monitor and read labels carefully to know what we are buying. I think about those who aren’t educated enough to know to do this nor should they have to. It’s time that more action is taken so that all U.S. citizens don’t have to be concerned with certain chemicals being in the food they eat. Our health needs to become more of a priority moving forward. While self-care and wellbeing have already been a major focus of my life, I intend to make this even more of a priority in 2024.

As we say goodbye to 2023 and start a new year, I extend to you my wishes of happiness, good health, and success. My journey continues onward. Thank you for following along.