PATIENT STORY

By Natalie Galaszewski

I was officially diagnosed with Lupus in my mid 20’s but had experienced symptoms as early as 9. It took many doctors, many misdiagnoses, and multiple organ issues to get me where I am today; and we are still organizing some of the puzzle pieces that may have fallen on the floor in the process. My lupus journey has been lots of trial and error, and I feel most patients likely experience this as well.

I have the autoimmune combo package as I like to call it. It all started with my pancreas failing out of nowhere which threw me into the whirlwind of type 1 diabetes, but also being an insulin resistant diabetic. It wasn’t until a couple years ago with the new omnipod technology that helped shape my diabetes into a more manageable disease. From there I spiraled into Hashimoto’s, gastroparesis, fibromyalgia, early kidney disease, postural orthostatic tachycardia syndrome, gastroesophageal reflux disease, and the list goes on. My heart finally stopped cooperating at age 24 which, after two cardiac ablations, led me to need a pacemaker. I went from tachycardia to bradycardia after a failed ablation. They also managed at that time to perforate my heart with my ventricular lead, rendering it useless. Luckily, I am surviving off of my atrial lead for the time being. A year or so ago I received my 2nd pacemaker. To say my history is complicated would be an understatement. At the beginning of this year, I hit my 18th surgery! My coworker jokes that “when” I hit 20 we’re going out to celebrate. Fair enough! I couldn’t possibly take the time in this article to touch on those 18 bullet points in my life, but they do all tend to circle back around to lupus.

In my lupus journey, I have unfortunately failed on many of the traditional therapies. I am on drug numbers eight and nine now. During the last two years, I have been receiving Saphnelo infusions every

4 weeks and taking Tacrolimus as my daily maintenance medication. So far, we are seeing some positive results on paper when it comes to inflammation and white blood count levels; but as for that lovely chronic fatigue we all endure, there is no relief so far. I still experience joint pain, nerve pain, and muscle pain depending on who wants to be the star for that day. They all like to take turns. Mostly I find relief in keeping an active lifestyle. I work full time as a pharmacy technician, manage my own house, and take care of my pets. My biggest “therapy” in life though has to be my horse, Breeze. I find comfort in animals and in him especially. I got him when he was 4, and we just celebrated his 27th birthday on May 1st. If you haven’t guessed yet, we are taking a very literal approach to “reining in lupus” this month. My horse has been a huge part of my life, my recovery, and my journey into the future. He has walked by my side as I wobbled along on a walker after I broke my leg, stood as I used him to brace doing physical therapy exercises, been my big shoulder to cry on, my trail riding partner when I needed to escape life, and my most loyal friend. He never judges and moves whatever pace I am comfortable with for that day. Some look at us and wonder where I get the energy to not only take care of myself daily, but also him. Easy answer - it’s never hard when you love them. He takes care of me as much as I take care of him. We have a bond and a level of communication most people don’t have. If I am going to battle chronic fatigue every day and get through a day at work, having that piece at the end of the day that doesn’t feel like work, is key to a work/life balance that’s often hard to achieve. Obviously, this is not a therapy fit for all, but it has been my most beneficial to my mental and physical state.

I am not hard wired for lots of down time. I stay busy and keep moving forward. Do I burn out sometimes? Yes, but I reboot and pick myself back up. I travel, find new hobbies, and make time to do things I enjoy (not as often as I probably should). If I could give anyone just one piece of advice, it’s that an un-stimulated mind is one of the most detrimental states we can put ourselves in dealing with this cruel mysterious disease. We need rest, but we also need purpose. We need a hobby or a craft that speaks to us on a level that lessens the hard moments. If I am going to be tired anyways, I might as well be tired with my horse!

Everyone needs an outlet in life, and he is mine through thick and thin. I have been riding horses and doing some form of karate since I was 5. Through my illnesses I have managed to hold onto those outlets as my source of de-stressing.

Last year I was hospitalized for septic pneumonia, and it nearly took me out. I have had many health scares, but this one took the cake and has still impacted some of my medical conditions to this day. It was a long road and a challenge getting back home and back on my feet. I went back to work pretty much immediately. My mom traveled up during this time to help out with the animals while I was in the hospital, and one of the first questions she asked when I got discharged was “you want to go to the barn don’t you?” And, that is absolutely what we did- oxygen in tow. Breeze was not particularly a fan of the temporary oxygen tank, but he took it all in stride as he’s done every other challenge we’ve faced together. We built my stamina back up by taking daily walks together and getting my routine back on track. He would pause to let me catch my breath and push me just a little further each day.

Lupus is a hard journey for any who experiences it. Support is crucial, whether it be a person, a place, or an animal. My horse, Breeze, is an integral part of my support system and regularly helps me rein in my lupus. I am a naturally very strong confident person, but there are days where I have doubts on what else I can possibly handle in this life. There seems to always be a new challenge to overcome, but we keep on fighting and persevering the best ways we know how. I hope that every lupus warrior can find their own version of what Breeze is to me and live their best life. We all deserve a support system to keep the fight going.