Learning to live with Lupus was the next step in my journey. Only a year after graduating high school, I was changing my plans and everything about my life just to live. This put me on a path to finding my new normal, but it was scary not knowing what that new normal would look like.
In the beginning, the goal was to live a normal life and not let Lupus change me or my future. The plan was to go to college and start a career, then get married. However, my Lupus was very unstable, so the plans changed. My life became a roller coaster of doctors, labs, and tests (much like what I am going through at this moment). I was forced into quitting my job, putting college on hold, and applying for disability which I was on for 10 years.
We not only had to learn what to change but had to find the strength to implement those changes. There was no single magical change that could have put given me my new normalcy. Rather, it was an evolving change with many pivots as time went on and it is still evolving. But change is the only thing we can all count on regardless of health but being at a young age without my current knowledge, it was very overwhelming. Even the need to take the same medications every day, at the same time was a challenge though it became easier over time.
Doctors advised on some obvious changes regarding smoking, drinking, eating healthy, and getting exercise. However, there was difficulty figuring out what changes were pertinent to my Lupus and to what extent. For instance, exercise for me was supposed to be light weight-bearing exercise or swimming. There would be no more running, heavy weight-bearing exercise or anything else that would put stress on my joints. This change eventually evolved into eliminating contact sports completely.
Some changes were easy to make like changing the type of lotion or laundry detergent. Some changes were new and things I should have been doing anyway like wearing sunscreen and staying out of the sun. I did not follow those rules at first then one sunny afternoon, I found hundreds of clear blisters on my body. Whereas other changes like reducing stress was a bit more challenging. We were young, living on our own, and I was forced to stop working so it was a stressful time. We were making very serious decisions about the simplest of things which was confusing because I still had the capability to do normal things, the question was whether I should or not. The consequence of doing normal things was flaring Lupus which I was more than happy to pay. Sometimes the consequence would be swelling or slight fever while other times, medication or hospitalization was required.
For instance, my decision to chaperone my daughter’s field trip to Disney was almost a disaster. The trip started with an eight-hour overnight bus ride, a short breakfast then a day at the first park. The day was packed, and we were busy until late that night. When I awoke the next morning, my calves and feet were swollen. My feet were so large that there was no way I could fit them in my shoes. Extra medicine was always on the packing list which I took immediately. Thankfully, the kids were gone were for two hours for a special side trip with the Disney orchestra. This allowed time for the medication to work and for me to get myself together. By the time they returned, I was able to stuff my feet into my shoes with the laces pulled apart as far as the shoe allowed and continue my chaperoning duties. No, it was probably not the best decision, but I had to try. Recovery required two days off work and more Prednisone, but it was worth it to me.
Early on, I learned to pace myself with everyday tasks like cleaning the house to avoid paying any consequences. Depending on how I was feeling, it could have taken two days to get the job done though there was no guarantee it would be finished as planned. The hardest thing was learning not to be so hard on myself for taking more time to do things.
Doctors also told me to change my diet and eat healthy but did not give any specific information. Most things were learned as time went on and information became available. We moved many times in my husband’s military career and support groups for Lupus were hard to find. So, much of what was learned was by experience. Due to the high doses of Prednisone, ulcers developed in my stomach, and it became very clear that I should not consume raw onion or jalapenos. The pain was enough for me to know not to do it anymore. This is when I started to understand what the doctor meant by being my own doctor. Learning what triggered my Lupus was an important part of finding a new normal and food played a part. The first trigger learned by paying attention to my body was synthetic sugars. Synthetic sugars caused pain and swelling in my extremities and sometimes triggered migraines. These sugars can be found in many diet sodas or energy drinks. This may not be what happens to another person with Lupus as everyone is different. Also, these chemicals can cause swelling in anyone, for me it just happens quickly with more intensity. Eating better foods was one change we were willing to do though at times it was not easy.
The good news is that though I was not able to go to college or have a career when I planned for it to happen, it eventually happened. I just needed to be patient and work harder but it happened. My husband has stuck by my side the whole time and though we did not get married when we planned, we still got married. We were unable to get married because I needed my insurance. We thank his military service every day for giving us that opportunity. We did not have children as planned due to endometriosis issues which is a topic for another post. However, we eventually adopted the best kid ever (though she’s an adult now). The one thing we have learned the most in this journey is that sometimes plans are not meant to happen the way you may expect, but life works itself out with a little patience.
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