The Bright Side

Update: muscle weakness continues to be an issue but thankfully, physical therapy starts soon. My husband and I recently took a trip to Texas for a wedding and as a 30th wedding anniversary trip. The first morning I woke to painful, swollen legs. I shuffled my way to breakfast then we rested until medication (prednisone) relieved the symptoms. Lupus joined our trip and we had to bow out of a few activities to ensure I would enjoy the wedding without issues. A person with Lupus never knows when or why their disease will make an appearance so it is important to know the signs and be prepared. Thankfully, we were prepared with extra medication and adjusted the schedule so we could enjoy the trip. I’m fortunate to have someone by my side that accepts these interruptions and just goes with it.

The Bright Side

Lupus may have taken my life through some difficult turns down an unnamed gravel road in the wrong direction, but it led to me where I am today. Though the road was not always pleasant, there was a bright side to having Lupus and being placed on disability (even if only a short time).  Lupus gave me the opportunity to spend valuable time with loved ones, help family and friends, and volunteer when possible.   

In the beginning, I thought being on disability was the worst thing that could happen and found it difficult not working or being productive. However, being at home gave me the opportunity to help my mom with raising my youngest brother. She worked long days, but I was able to be home for my brother after school and get dinner ready. She never has to worry about what to do with him during any school breaks and summer vacations. I was also able to help other family members and neighbors with their children as well when needed (and I was feeling okay, of course).

The Army moved us out of state so I couldn’t be home for my brother after school anymore, but he would still spend summer vacation with us regardless of where we were living. He would often come during school breaks and sometimes with other friends or family. We often had family spend their vacations with us though we saw more visitors when we lived in warmer climates. Many times, the visitors would stay for a week or so which meant that we had a houseful many times throughout the year. I was not only able to spend time with them but was also able to travel and do touristy things.

In most work environments, it would not have been possible to take so much time off without risk of losing the job. Being on disability gave me the opportunity to spend quality time with each visitor and give them my full attention. Although, there were times where Lupus (or endometriosis) joined the party, but we always made the best of it either way.

The time at home also gave me the opportunity to be a volunteer with the Boy Scouts. While living with my mom and brothers (before the Army), my youngest brother wanted to join the Cub Scouts but there was no leader for his age. My husband and I volunteered to be co-leaders so the kids could participate in the program. My original plan at this time was to be away at college but life led me to be a Cub Scout Leader, even if only for a short time. We thoroughly enjoyed this volunteer position and am thankful to have been given the time to do it.

Being home allowed me the time to watch many children over the years regardless of where the Army sent us. Neighbors counted on me to watch their children for various reasons, (sick, appointments, shopping, etc.). I was often the emergency contact for the neighborhood children or family when living in Michigan. There were times where I was unable to help babysit but everyone knew that I would have if able to do so.

Disability made me feel useless and it was often very boring. To remedy that feeling, I taught myself how to create many things. Quilting was the hardest thing to learn but was a good consumer of time. Each fall, I would make something new for my family. If it was easy to make and there was enough, I would sell these items at local craft shows. For me, it was nice to get out of the house, the extra money was just a bonus. There were times when I was commissioned to make something like a quilt, wall-hanging or whatever was popular at that time. I was even asked to teach a card-making class to the women’s group at church once a week which I did when able. This would not have been possible if had I started the career as planned.

Disability also allowed me the opportunity to be an Army volunteer. The Family Support Group was my first volunteer position, and I was more than happy to give back. Shortly after the move to our first duty station, my husband deployed. So, there I was in the middle of nowhere, knowing nobody nor anything about military life. The pharmacy would not fill my prescription because it was from out of state and I was unable to get a local prescription due to an insurance issue. The newly created Tricare said I was supposed to be on the old military insurance, Champus. However, Champus was no longer for family members under retirement age, so I did not qualify for either of these insurance plans. If you recall, the main reason for joining the military was so we could get married and have insurance. It was quite frustrating, and I had no way to contact my husband. Then one night, someone from our units Family Support Group (now called Family Readiness Group) called and asked how I was doing being new and alone. I explained the situation to her and asked if there was somewhere I could go for assistance. She had no idea but promised me that she would try to find out. The next evening, she called back and told me that her husband (the colonel) found out that I had fallen into a hole (or crack) that had not been addressed with transfer from Champus to Tricare for military family members. She then gave me the address of an internal medicine doctor who would be waiting for my arrival and willing to write the prescriptions. She called every day that week until it was settled. She was my lifeline and I wanted to be that person for others. I joined the family support (readiness) group and it gave me great pleasure to give back to the military community throughout my husband’s career and beyond.

 At our next duty station, I took volunteering one step further and became an Army Family Team Building Instructor. This was a perfect volunteer job because the preparations could be done at my leisure then I would teach a half hour class here and there. The classes ranged from simple topics like Army rank to formal topics like Army customs and courtesies.

A couple years later, I volunteered to be an Army Family Action Planning delegate. This required learning about issues that affected the military communty in the local area, picking those that need prompt attention then taking them to Washington D.C. to fight for change. I was part of the civilian sector where legislation was written to make military family life better. It was one of the most rewarding things I have ever done. Lupus joined the party while I was in Washington but thankfully, I was prepared with extra medication so was able to make it through the week-long endeavor.

Time was a gift that allowed me to participate in the growth of many children and to be a life-long volunteer for the Army. None of this would have happened had I went to college and started a career. I am sure my family would still have visited but the time spent with them may have been much shorter. I have never asked, “why me” after being diagnosed with Lupus. I accepted it then rolled with the way life was leading me. Life eventually led me to my current employer where I gratefully worked for the past twenty years. Although, the most rewarding jobs to me, were those done without pay.