Mom on a Mission
I want there to be a cure, and most importantly, I want to live to see that day.
I want people to hear I have lupus, that you have lupus, or Selena Gomez has lupus, and automatically know what it is — what it means to our lives and what we endure. I am fed up with explaining. I am fed up with ignorance. Mostly, I am fed up with being me and all the pain and misery I must face.
So, I walk, I raise money the Lupus Foundation of America uses towards funding research and treatment development, and I continue to try and spread awareness.
I listen to all those wonderful cancer awareness campaigns and I think, “God bless them, but everyone knows about cancer and what it is and what it does. What they really need is a cure. Cancer awareness has been achieved.”
But, with lupus, when you watch a talk show host as articulate and informed about important causes as Ellen DeGeneres sit down with Selena Gomez and ask what lupus is because she did not know, well it points out that awareness for this disease is pretty low.
I want to change that, and the only way I can think of is to not be silent about it. To not go quietly into the night, but to wear bright purple t-shirts and shout my warrior battle cries around Boston Common.
I will continue to petition our leaders to support lupus research funding and I will write about what it is to have lupus and to be a wife and mother who is afraid she won’t be around to make all those memories she dreams of making. All of this inspires feelings I am certain many of my fellow lupus warriors can relate to:
Fear
I am scared. I developed pneumonia out of nowhere recently and on top of everything else happening with my lupus, it really felt like I might succumb to it all.
I have been through a lot with this disease, but I think there have only been a couple of times I felt so uncertain if I had the strength to make it. It made me think about the future and what could happen next. It made me worry what a flare like this might do to me when I am a bit older.
Anger
None of this is fair and none of us deserve to have our lives so brutally disrupted. To top it off, we also have a large chunk of the population unaware what lupus even is, so how can they respect our battle when they don’t know what our disease can do? Lupus warriors spend their time explaining.
Resentment
I see others so blissfully healthy all around me and I cannot help feeling jealous, and at times, resentful of the ease in which they chase after their kids or proudly share they just ran 10 miles before work.
Even when I was exercising daily, it was a constant battle with pain and health setbacks. I never felt “good” or energized afterward. So, resentment can creep in. I don’t like this about myself and I am trying to learn to let this go, but it is difficult when each moment is a struggle.
Grief
I mourn the loss of who I once was. Because of lupus, I no longer run. I no longer enjoy anything that happens during weather extremes.
With cold weather on the way, I have already begun my retreat inside. Lupus hates the cold and though snow used to be one of my favorite things, I no longer can play with my kids like I wish to without suffering unbearable pain for days afterwards.
I feel robbed of experiences and memory making moments on a daily basis and I grieve the death of who I once was. All of this sounds overwhelming, I know. But, if you have ever felt the same, I ask that you consider helping me spread lupus awareness.
If you can, raise money to support research and treatment development that is funded through campaigns like the Lupus Foundation of America’s Walk to End Lupus Now. Do not give up in silence, but rather, fight on with your head and your voice raised high. As the campaign says, “People need to know lupus — for someday there to be no lupus.”
