Tiny Salutations

Tiny Salutations

About

Friday, May 19, 2017

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 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.

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 that 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 far been stronger than the physical pain and shame/anger at myself at 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 maddening. It is also maddening 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 ears 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 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. 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.
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 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.
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 those whose disease are 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 insane. 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'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.
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- 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 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.
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 that I never experienced before becoming sick.

Tuesday, April 18, 2017

365 Days of Something Beautiful Photo Project: March

I know, I know. March was practically a lifetime ago. Here is the March installment of my 365 Days of Something Beautiful Photo Project (click here to read about the beginning of the project).

I know I have been neglecting this space, a space that has over the years become important to me and, as I have found out, to others as well. I have been simply overwhelmed with responsibilities, and I have found that I haven't the time for all of them. As my son has grown, homeschool has become a bigger part of our day, as has therapies/treatments for autism. I have been diagnosed with more rare diseases. My son was ill from a "cold" for nearly four weeks in March, from which I also suffered bronchitis/early pneumonia. The absolutely most chaotic and time consuming of all though is... that we have to move. Rather suddenly. So we have to try to scramble to get out of our current house with very little money, very little time, and very little "ability" (I can't quite move any boxes around, can I?). Thankfully, we have had several wonderful people come to our aid. However, we still have to get our house packed and moved and our truck the rest of the way mended in very little time and almost entirely with only our own imperfect bodies. So I have had no time. For much of anything. I do, however, still hope to do better in not neglecting this important space, and I thank everyone that has hung on during this blog-drought!

Now, enough, to March's 365 Days of Something Beautiful!

March 3a: Rain on the window
March 3b: Rain on the window
March 4a: Home Depot building project (rain gauge)
March 4b: Home Depot building project (rain gauge)
March 5: Veggie sushi
March 6a: Snow catching spring by surprise on the Maple
March 6b: Snow catching spring by surprise on the Maple
March 7: My son hugging Toothless and being odd
March 8: We participated in a genetic autism research project called SPARK.
March 10a: My son throwing rocks in the Puget Sound at Kennedy Creek Natural Area Preserve
March 10b: My son throwing rocks in the Puget Sound at  Kennedy Creek Natural Area Preserve
March 10c: Kennedy Creek Natural Area Preserve
March 11a: Ethnic Celebration- lovely ladies in traditional clothing of different regions of the Philippines at the Filipino-American Community of South Puget Sound booth
Macrh 11b: Ethnic Celebration- storyteller at "Story Telling: Celtic Women of Ancient Scotland" presentation (by the Seattle Scottish Highland Games)
March 12a: Oyster shell
March 12b: Oyster shell
March 13: Light of stars
March 15a: My sick baby boy getting emergency care
March 15b: My sick baby boy being snuggled by Daddy at emergency care
March 16a: A Cairn and the Virgin Mary in the hospital garden- the melding of different cultures for the same purpose, comfort to those in need
March 16b: My poor sick child in emergency care again
March 17a: Light rays through the clouds
March 17b: Light landscape
March 18: Celtic copper cuff
March 21: My son and I did a great month-long homeschool unit about awesome women (March is Women's History Month) and we created a banner crisscrossing the wall in honor of the many women we learned about!
March 22a: Chrysanthemums
March 22b: Chrysanthemums
March 23a: Mima Mounds (our favorite park in the area)
March 23a: My son scanning the surrounding area (Mima Mounds) with his tricorder. {For those that will ask, I built this tricorder myself out of assorted pieces of wood and paint (and a hinge) as a Christmas present for mon petit Capitaine-- and for others that will ask- this is from Star Trek ;) }
March 23c: Our son at the Mima Mounds, tricorder in hand
March 24a: Lichen
March 24b: Moss
March 25a: The inaugural flight of our newly made kites (made at the LOTT Wet Science Center- in the background)... look at that joy! 
March 25b: Our son flying his new handmade kite
March 25b: Our son flying his new handmade kite- he's getting the hang of it!
March 26: Grey Squirrel
March 27a: A blanket of small wildflowers
March 27b: The Red-breasted Sapsucker that loves the birch tree in our backyard
March 28a: Rain on the cherry blossom
March 28b: Rain on the cherry blossom
March 29a: My husband had eye surgery on only one eye, which resulted in the dilation of just one side!  
March 29b: An earthworm running from the rain
March 30a: My son smelling a dandelion in a park filled with cherry blossoms
March 30b: Cherry blossoms (and sunshine!)
March 30c: My dashing husband
March 30d: Cherry Blossoms
March 31a: Magnolia Blossoms
March 31b: Magnolia Blossoms
Stay tuned for April's 365 Days of Something Beautiful! (And some actual writing too)