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A Year of My Life With Rare Diseases in Photographs

A year of living with rare diseases in photographs:

May is Lupus Awareness Month. Lupus is one of the many rare diseases that I struggle with every day*. It is often hard for others to see what my life looks like. It is so far removed from a typical life of a 20-something young mother – or for that matter from the typical life of healthy individuals at any stage of life – that my words don’t often convey the truth well enough. And I’ve found that without being able to understand someone else’s truth at all, 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 (MCTD), antiphospholipid antibody syndrome, myasthenia gravis (the diagnosis of which was actually called into question during this year), fibromyalgia and –diagnosed during this year – hyperadrenergic postural orthostatic tachycardia 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.

Being sick has made me require a wheelchair. Unfortunately, so much of the world is inaccessible, especially so much of the natural world (let’s not pave it all over either!). I am often just on the outside of experiences, such as taking my son to the beach.

My husband, knowing I am not content with the perimeter, particularly of nature, has dragged me in my wheelchair to many an inaccessible place. The wonder of nature has thus been far stronger than the physical pain and shame/anger at myself for needing to be dragged across the beach.

Here my husband is trying to transfer me to the bench (that’s a heart monitor, not a purse). My husband has had to fill the role of caregiver as well, and not just to me, but to my disabled son as well. I have lost a huge amount of independence, which is upsetting. It is also upsetting that my husband has lost some of his independence as well by becoming a caregiver and that he shouldn’t have to do that at 30 years old. (You can see our wedding photo behind him – in sickness and in health, right?)

Being sick is painful. My joints often hurt too badly to be used and several times a month they hurt beyond being able to respond to any kind of treatment, leaving me in agony and, at times, in tears. I have round-the-clock pain medications, but illness is painful.

There are mountains of paperwork required when you are sick and/or disabled. Between keeping up with medical insurance, medical and pharmacy bills, many government programs, medical documents and records…the amount of paperwork is something I couldn’t have fathomed. The other part that I couldn’t have fathomed is the poverty. I somehow expected that in this developed country, we take care of our sick and disabled, but it is a much more desperate reality. You can have your short-term survival or your long-term survival, but it is not easy to have both.

I wear a BiPAP ST to sleep. It 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.

I have vomited out of the side of the car way too many times to count. My body has become too weak to hold it together through the hard work of vomiting, and so I often end up injuring myself in process now, such as tearing tendons in my shoulder or popping dozens of blood vessels throughout my face and eyes.

To keep my many rare diseases under control, many prescription medications are needed. I take 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 anyway. So I’m thankful to have awesome company.

I have spent many hours in the comfortable chairs of the Infusion Clinic at the university hospital. Once a month, I spend a day waiting while immunosuppressive drugs are slowly infused into my body. Chemotherapy and other immunosuppressive drugs are often used to control autoimmune diseases, especially for those whose disease is more aggressive.

When I was pregnant, I imagined all of the things I would do with my child, and pretty much all of them involved traipsing through nature, exploring. The way my motherhood has actually played out has been different, and although we have found many things to enjoy together, I would love much more to be able to run in the waves with him and to share with him all of the secrets of the natural world.

The muscles in my bladder are nonfunctional, which requires me to use catheters. The amount of medical equipment required to keep someone that’s seriously ill afloat is wild. And every time I need to leave the house, I feel like I am bringing the house with me.

Our calendar is filled with doctors and medical tests and therapies. Between my son and I, we usually have at least one appointment per day. We have on average 40 appointments (including therapies) per month. The amount of medical care alone is often exhausting.

We spend so many hours at doctors’ offices and hospitals. We usually make a weekly trip to either the university hospital for my care or the Children’s Hospital for my son’s care – either trip consuming an entire (long) day. Many, many hours have been spent at these hospitals.

Countless hours are spent in doctor 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 I would have loved to be included in – crawling through a Jefferies Tube (Star Trek) with my family, but it was not something I could physically access.

Inclusion & Accessibility: This was something I could physically access. I think something that is very difficult to understand though is that even when you can access something, it is rare to be fully included in the way an able-bodied person is. Although I am grateful to be included, it is often on the perimeter or in an altered way, not fully included. I am grateful to have been able to participate in this photo with my family (and Klingons), but I was off the set and difficult to frame into the photo, difficult to interact with on the perimeter. After a while, a life on the perimeter, an adjusted life, wears on you a bit. (This is just one of many examples – we had a ton of fun at this event!)

I have had so many vials of blood taken for testing. Every month I get several tubes of blood taken as routine testing, then add on any extra vials for other concerns, other testing or retesting when my blood work comes back concerning. I used to be afraid of needles (fainting afraid), but this consistent exposure has completely cured me of this fear.

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 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.

Due to my illness (which didn’t start until pregnancy), my son was born premature at only one pound. He had to be intubated so long after birth that he now has lung disease and is medically complex himself. This photo is from an airway surgery he had this past year.

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.

Due to my son’s autism, our lives are always a little out of hand. And his needs have compounded with mine to require a lot of caregiving, which is all on the shoulders of my husband. His needs have shaped his homeschooling, but his strengths and interests have shaped his homeschooling just as much.

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.

Some relationships have suffered since becoming sick, but some relationships have grown even stronger. There is nothing like feeling like someone understands you and accepts you for who you are, illness and all. And seeing my son who has his own illness and disabilities accepted is all I could hope for in the world. I feel like there are people there for me in the world in a way I never experienced before becoming sick.

This post originally appeared on Tiny Salutations.

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