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.
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