Health, Mental Health

The Little Deaths

Many people understand that receiving a diagnosis of a chronic, painful, incurable illness, is much like dying. Before you had different needs, goals, and limits that must now pass away before the new version of your identity can rise, and take shape.

However, disease progression can hit at any time, stealing your sense of self, and starting the cycle of grief anew. Once I was able to just keep pushing myself. I would be sore the next day, or two, but that was it. Now, the consequences are much more extreme, and overdoing it could cost me a few days in bed.

While writing helps me make sense of, and purge negative emotions, it was never something I aspired to. I spent 6 years up to my eyeballs in environmental, wildlife, botany, and sustainability research, as I worked on my Bachelor in Environmental Science, with a concentration in fish, and wildlife. I planned on graduating summa cum laude before pursuing my Master of Science, and Doctorate in Sustainability.

I wanted to help the world make some needed changes to reverse environmental damage, and move towards a sustainable future. I had spent much personal time in research of sustainable design practices I wanted to share with the places that need them most. I accept that this dream is not in the cards for me now. It took time, but I finally felt good about letting go of what is no longer right for me.

Being on long-term chemotherapy, and with the full knowledge that I will have to continue this, and more aggressive types of treatment for life, is reality. The me on the Dean’s List with a 3.98 GPA isn’t here anymore, and isn’t coming back. The me who was accepted to RIT (MIT’s little sis) does not exist.

I tried to be her. Tried my best. My new brain just cannot process that much new information anymore, or keep pace in a classroom setting, even with extensions. I was forced out 3 classes shy of my degree, but I had tried to take each of these classes three times each. I did my best, but could not get through the first weeks of classes without going into a flare. It was time to give it up, at least for a while.

I try to use my time to heal now. It may be soaking my sore joints in a bath, taking time to nap, staying hydrated, doing light physical therapy, or going to therapy. I’m not just waiting for the days to go by, I’m trying to look at this as an opportunity to slow down, and do all the things I never had time for before.

I have lost passions, hobbies, goals, and dreams, but I am still me. I am still alive, and I can fall in love with a new pursuit, try new hobbies, and dream new dreams. I survived all the little deaths, and there is still time. But if told me this a year ago, I’d only be able to list what I was losing. Now I’m trying new things, pushing the edge of my boundaries, and have an appreciation for life that might not have otherwise ever have developed.

Going through the stages of grief because of illness? Made it through the dark, and have a positive suggestion? Leave it in the comments!

Best. X

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Making Plans

While we are all familiar with the phrase “do not count your chickens before they hatch,” sometimes when you are always sick, you need to. Chronic illnesses are not only a physical burden, they are mentally exhausting, and emotionally draining. You cannot take a day off from chronic illness, and it leaks into every area of your life. If you stop making plans, it can feel like life is over.

This is why I make lists. I like to make lists about pretty much everything! One list is of all the places I want to visit. Another is about what helps me calm myself. I write lists for life that are more extensive than most people’s grocery lists. Then when I am stuck on bed rest, fatigued, sick, or just down in the dumps, I read my lists, add to them, or write new ones. Even lists about chores give me new goals.

I have to keep making plans, even if I do not get to finish them all at once, or at all. Making plans, lists, and plans based upon lists, is helping me live in the present. My plans helps me quell the fear that I will not have tomorrow.

Do you have a chronic illness? How do you handle fear of the future? What do you do to stay grounded in the present?

Please feel free to discuss in the comments

below! X

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autoimmune, Behçet's, Behcet's Disease, chemotherapy, chronic illness, Health, port, vasculitis

When “no cure” hits home.

I didn’t get it at first when they said there is no cure. I thought I “got” it through to my head, but honestly, it’s taken more than a year to get to the point where it finally hits home. No more mental running away. This is it. Behçet’s is here to stay, and I will need chemo, and ever-increasing interventions, until I pass away. It’s a hard pill to swallow at any age, but it’s especially bitter for the young—those who haven’t even begun to experience real life, or just got a handle on life, only to have the rug ripped out from under your feet. 

No cure.

So the port they just put in my chest is here to stay. There is no “getting better” at this point, but I smile, hide the tears, and try to find what little grace I can muster to be a grateful person. No one, except another one of the 16,000 Americans, or a handful of the medical community, can truly understand the hell it is to be trapped inside a breaking down body, that hurts with every breath I take. I can select a few hours, a few days a week to have slightly less pain, and maybe get a nap, but refusing narcotics, & opioids doesn’t get you a badge. In fact, it’s not even a guarantee that you still won’t be treated as a drug seeker when you do break down enough to brave the ER, which for people with suppressed immune systems, can be a deadly gamble. I’m still grateful for people’s love, and prayers, but I can’t explain there is…

No cure.

The country is a disaster, our president is unstable, and my government wants to take away the Medicaid that’s paying for my life-extending, and symptom suppressing meds. I still have two kids under 18, am a single-parent, and get to crawl through treatment without a penny to my name. I have fought for disability benefits for over 3 years since no one understands my rare disease. They may not even be granted before I die, and then they’ll be snatched up by the state to cover the paltry amount they’d paid out to keep me alive. I’ve gone through hell for a diagnosis, but my government scoffs in the face of science, refusing to properly classify my illness as a rare form of vasculitis with…

No cure.

Google Behçet’s Disease. Look at the Mayo’s page: autoimmune vasculitis. Look at the SSA handbook: inflammatory arthritis. Big difference when it comes to deciding how disabled a person is. This is not a case of a person with a bad back, or minor limp. I am someone who regularly struggles with walking ten feet to the toilet. I leave home maybe 1-3 times per month in total, all of which are typically visits to the doctors, specialists, hospital, and infusion center. I have no social life. My immune system is so tanked the friends I have left are too afraid to visit me. I’m lonely, broke, hurt in every joint, and my face is covered in ulcers–it’s so glamorous! Still I persist knowing there is…

No cure.

 Now I know though. No more false hopes, or wild fantasies of a cure being found. The truth is 16,000 people are not a big enough group for Big Pharma to ever profit from healing us, so there is little to no research being conducted for our benefit. There is no ice bucket challenge, or sponsor from the music, or film industry. No documentaries of our struggle for life. For a while it just ate at me, you know? The unfairness of it all. For me, there is no genetic marker, but rather check-mark, after check-mark on the childhood trauma list. Enough trauma for my body to weaponize against my existence with…

No cure.

Will I see my children graduate? Will I get to tell them how proud they make me, and be there to support them as they grow? Will I ever hold my grandchildren? My mom, or dad, will they ever understand my battles, and feel bad for abandoning us while at the same time helping so many other families through their church. Will my children get my indifference to an all powerful deity who gave me to parents that didn’t want me, a mother who tried to kill me, and the disease they left me with from the trauma? Will they love me despite all my mistakes because I fought in the face of…

No cure.

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Limbo

Everyone I know who is chronically ill can remember the time when they knew that something was wrong, but could not put a name to it, or get effective treatment. It can be like living in limbo. 

lim•bo (noun) is “an uncertain period of awaiting a decision or resolution;” or “an intermediate state or condition.”


(http://www.google.com)

That is where I’ve been since October of 2013. It started with a loud whooshing in my ears when I got up, bent over, moved my head to fast, or squatted. One day I was squatted down cleaning the lower portion of the window when the whoosh, whoosh started in my ears, and then my vision went dark.

I stood up, touching the window for some frame of reference, and within 15-20 sec. it had passed. Then it started to happen more frequently. I turned my head to look for the remote control one night weeks later, and lost sight for almost a minute. I needed answers!

I scheduled a visit with my primary care office as soon as possible. When I went in and described what I was experiencing, a doctor first thought that it was due to my low blood pressure. They did a test where they took my blood pressure standing up, then after sitting, then after lying down. I was diagnosed first with a blood pressure condition called orthostatic hypotension

Basically, the thought was that my blood pressure was dropping when sitting up from lying down, and after standing up. I was urged to increase my salt intake, and drink plenty of water. I followed orders, but my vision kept blacking out in longer, and longer chunks of time. It came with dizziness, disorientation, loud whooshing in my ears, and sharp pain in my neck, and right shoulder blade. As if someone was trying to pry my shoulder blade off with a crowbar. 

My doctor was stumped, and referred me to the Duke Eye Center in February, but they could not fit me in with any neuro opthalmologist until May. My partner, a medical illustrator, happened to have a client who specialized in eye disorders. After an email to the neuro-op describing my symptoms, I was immediately added to schedule (even though there was no opening) the next week. My new doctor knew immediately what was wrong, and diagnosed papilledema in both my eyes.

Papilledema is one of the hallmarks of a little heard of condition called IH, IIH, intracranial hypertension, or pseudo tumor cerebri. This condition occurs when cerebrospinal fluid fails to drain properly, causing high pressure, which floods the space around the optic nerve, and compresses it. An MRI, MRV, and lumbar puncture to read my opening spinal pressure were the next steps to confirm my new diagnosis, and took up the better part of the next week. 

Thankfully the neuro-ophthalmologist was absolutely right, and not a moment too soon, as my black outs were lasting a few minutes now. I was immediately put on a heavy dose of Acetazolamide, a water pill, or diuretic known more commonly as Diamox, to reduce my pressure, and also hopefully prevent blindness.

This was just the beginning of my descent into chaos, a limbo full of symptoms that did not match my current diagnosis. My next referral would be to rheumatology…