Fifteen years ago, I was diagnosed with Lupus (SLE). In the beginning, I was often sick. I was prescribed heavy medication that for the most part, didn’t make me feel any better. I remember the sense of trying to find control and how I was going to live with this new life. Even though, I tried to hold onto my job, the stress of being reliable for my employer grew to be too much, so I quit. As I explained in my other blog posts, since then I did take other employment and volunteered which helped me grow as a person with an illness.
After 5 years of taking the same formula of medication, I dropped two of the heavy prescribed and stayed on one. Most lupus patients, may find it surprising, but I was on a steady dose of prednisone for 11 years. I had always did well with my doctor visits and health that taking prednisone was easy for me. If a flare came up, I would just increase my dosage and like magic it would work instantly. However, due to doctor pressure, he told me it was no longer good for me to be reliant on and asked me to consider changing to plaquenil. I hesitated. Two years I hesitated until finally I prayed to Our Lord and asked Him to please help my fear. In 2012, I began taking plaquenil and since then, thanks be to God, I’ve done really good.
I mean, I still get flares and I noticed that when I get sick…I’m sick! Whether cold or flu…it hits hard but all in all, I think I’m handling them fine. I can’t increase the plaquenil when I do get a flare and now…I just “suffer” through it. The flares are mostly the same. Headaches, hot face/fevers, joint pain achy, fatigued, low energy, sometimes nausea.
But I have to say…now when I do get flares, I find myself in an emotional spin.
It makes me think of those with lupus who suffer far greater than me. Who are hospitalized. Who have to take chemotherapy. Who cannot get out of bed. Who have no one to help them. Who do not have the luxury of having to maintain a job.
I know I am blessed beyond my way to attempt try and explain. I know I have everything in my environment to deal with the case of the flare ups. But at times, I wonder if I am not doing enough to battle them! Do I give in too easily when the flares happen? Do I not work through them by pushing myself? Am I not training my spirit enough to be more of a fighter when they come?
There is also the mental battle determining if this the “big one”?
I can’t help at times think that my lupus could get worse. Here I am going on fifteen years of SLE and all of it, in my view, has been such a blessing compared to other’s experiences. Yet, every time I get blood work, the rheum always communicates that my markers are clear. The type of lupus I have is the terminally ill form. For years, I’ve worked with my Lord in pushing that out of mind. To demonstrate my life with the graces He gave me to show others, I accept His will and do my best for others. To share with others, what He has taught me.
In these last three days, I’ve been going through a flare. I know it probably came on due to stress. Yet, my approach is the same. Decline all events. Find myself less sociable. Rest. But this time, I feel like I need to do more. So this time, I write.
Sitting in Mass yesterday, I asked my Lord for His will be done onto me. Each and every time a flare happens. It is a purging in some sense. Because it stops me and makes me think of my mortality. What matters. What I need to let go. How much I want to be ready for Heaven.
Flares make you feel like life is passing by and you only have energy to look at it go by.
They are reminders when you are feeling great the other 98.9% of the time to do something with it. From the smallest gesture in a day to something grand. I ask my Lord to help me with that! To help me with the battle of when it feels like I’m not fighting hard enough and instead of dragging that Cross He’s given you, to carry it up high, like an army soldier raising a victory flag! 🙂
Remember, suffering is part of your Christian transformation. Respond to it! When you do, Jesus will fill your life in ways you didn’t have before. +++