May is Lupus Awareness Month. Lupus is one of the many rare diseases that I struggle with everyday*. It is often hard for others to see what my life looks like. It is so far removed from a typical life of a twenty-something young mother- or for that matter from the typical life of healthy individuals of any stage of life- that my words don't often convey well enough the truth. And I've found that without being able to understand at all someone else's truth, we tend to dismiss their lives as a whole. So over the past year, from last May to this, I've tried to collect photos, mostly self-portraits, that show some of the truth of this life. There will, of course, still remain something intangible. It is difficult to catch frustration, pain, desperation, poverty, surrender, gratitude, the feeling of being completely out of control, the way disease seems to infiltrate every aspect of life... but I've done my best to capture little pieces of it here.
I suppose it may be helpful for those who didn't know me prior to being sick, to know how my life looked then. I was fit. I went hiking maybe 100 miles or so in a month and worked full time while in school full time until getting my Master's degree in marine biology (and then subsequently getting sick). I volunteered quite a lot and did everything in my power to minimize my impact on the planet. Now that my life has changed, there is a new me and new choices I must make, which I don't always like. No matter how I feel about it, this is how my life is and how my life will be, and I try my best to make the best of it. And sometimes, it can be pretty awesome too.
*I have been diagnosed with lupus, mixed connective tissue disease, antiphospholipid antibody syndrome, myasthenia gravis (which diagnosis was actually called into question during this year), fibromyalgia, and- diagnosed during this year- hyperadrenergic postrual orthostatic tachycardic syndrome and baroreflex failure. I have nerve, muscle, and joint damage, resulting in loss of function of some of my basic systems. This also led to my surprising very premature and dangerous delivery (before which I had thought I was healthy). Not all with lupus will have a journey like mine!! Everyone is different (especially since I have several other diseases) and much can be done with proper care as well.
|I wear a BiPAP ST to sleep. I breathes for me, giving me a pressure to breathe both in and out, since my respiratory system is no longer able to breathe through the night on my own or keep carbon dioxide from building up in my system.|
|To keep my many rare diseases under control, many prescription medications are needed. I take a over a dozen medications. Each one is thought out with my medical team (no I don't want to try any supplements).|
|A device that helps to open my lungs when my breathing is worse.|
|Sometimes I get too sick to participate in the world for periods of time. I feel like I can push through a lot of the time, but sometimes I simply get too sick and get stuck in bed for a while.|
|....But I don't spend all of my time in bed alone! When I'm not well enough to participate in the world, my family usually keeps me company, which is probably who I would've hung out with that day anyways. So I'm thankful to have awesome company.|
|Countless hours are spent in doctor's visits- a couple every week.|
|My son is used to the long car rides back and forth to the city to get to the only hospitals in this region of the U.S. capable of treating us. (Sometimes he still gets tired out)|
|We have spent so much time in hospitals, in both planned visits and emergencies, that it feels familiar.|
|Inclusion & Accessibility- Here is an example of something that I would have loved to be included in, crawling through a Jefferies Tube with my family (Star Trek), but was not something that I could physically access.|
|Complex and/or rare diseases come with a lot of testing and, as pictured above, a lot of medical imaging. In addition to diagnostic imaging, I often get checked for pneumonia, blood clots, and joint/bone damage.|
|Neurological testing is often needed to assess the status of my neurological diseases.|
|Urinalysis is a common test to accompany blood work, especially for lupus patients, and is done often. Sometimes urine even has to be collected over 24 hours, which is always inconvenient.|
|Countless amounts of testing are needed, even when diagnoses are not being made. This sleep study was to find better settings for my BiPAP to ensure that I am breathing well and getting rid of as much carbon dioxide as possible.|
|Due to my son being born premature and having autism, he requires several weekly therapies.|
|My son's lung disease makes any respiratory virus dangerous. My husband and I have basically become his EMTs as well as all the many other hats we wear.|
|My son is medically complex and his life is just as full of testing and doctors.|
|Lupus causes me to be very sensitive to sunlight, which means that my skin needs to be covered when we go out.|
|It is hard to balance between accepting my limits and pushing them.|
|Lupus often causes fevers, which I could live with on any given day.|
|I'm not sure, had I remained well, that I would've found such happiness in photography. It is one of the things I am most thankful for being given in my illness.|