When I first was diagnosed, between one and three years, I was very depressed. I didn’t know what this illness would do to me. I didn’t research it because I was avoiding what I may see or learn about it. Sometimes, I feel you feed the mind information you’re not ready for, and it triggers things to become worse. That’s my way of thinking.
My thought process was: Wow! Who’s going to take care of my children? How can I tell my children this diagnosis may change our lifestyle – that there might be some life changes ahead of us? I laid in bed for days and probably weeks, really, really nervous and worried about the outcomes.
One day, I got a phone call from a friend of mine who said to me, “Listen. What’s going on?” I expressed what the diagnosis was and a little bit about what I knew about it. They said to me, “Listen. It could be worse.” And I took to that.
I was like, “You know what, I didn’t think of it like that.” I started to research a little bit more about it right then and there. I started researching more about the diagnosis, more about the illness, more about the different types of illnesses. I have the diffuse diagnosis, which is the one that targets the organs.
I thought, let me see if there’s a walk – and I found it. They have a walk to celebrate those who have been affected by the disease and honor those who we’ve lost. I started to look at how the diagnosis targets our bodies. It made me very nervous. But I was ready based on that statement – or I thought I was ready. “Let me go and do this walk,” I decided. I learned about the walk, and I did it.
I saw people for the first time whose skin may have been different from the normal, or whose limbs may have been different from the normal. That shocked me. It caught me off guard, and I cried. I couldn’t process what was actually happening. I just prayed to God and said “I hope that’s not me. I hope that’s not me.”
I saw someone who had an oxygen tank, with the tubes in her nose and everything. She had just received surgery. She said to me, “Who are you here for?” I said, “I’m here for myself.” She said, “Wow! How do we get to look like that?” And I felt very guilty. Like, how am I supposed to look? Now all these things were going through my head – “how am I supposed to look?” I started to look around and see other people with very tight skin, very thin lips, loss of their limbs; and all these things were now triggering me. I stuck it through. But after that, I went into a deeper depression, knowing that there was a possibility that this could happen to me.
From that point, I said, “What can I do to make myself better?” I never missed a doctor’s appointment. Never. If I did miss an appointment, for whatever reason it might be (if I couldn’t get out of bed one day or whatever), I made sure that I visited the doctor in that same week or in the following week. I took my medication like I was supposed to. I started to learn about the different things I would eat that would trigger acid reflux. I took a step back on eating foods that might trigger certain things. And I exercise a lot. I got really deep into meditation, trying not to stress, and doing things to help me regulate my illness. I would go to spas and get massages to get my blood circulating. I would go to salt therapy to open up the airway, and I still do that. Not as much, but I do it.
I just enjoy life as much as I can without the extra stress and continue to learn and educate other people on how it’s not the end of the world. We can change things around and live a much healthier life than the norm that we are expecting.