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

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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All the king’s horses…

Every time something scary happens with my health, I am forced to take a step back, and examine my treatment plan. The way we treat my disease changed significantly over the last year, since the symptoms of Behçet's Disease are not well controlled. The last few months have been quite the roller coaster ride, to say the least. I have been on chemo infusions every 3-4 weeks, and immune suppression for a year, but I still have the same swelling I started with.

When your doctor agrees treatment is not working, and it is time to try the big guns, it is kind of like a "holy shit, I was right!" moment, but it brings no joy. Instead I got extra blood work before I left that day, to make sure the drugs they wanted to try on me wouldn't kill me. I was so detached that I felt like I was floating next door to the lab. My pulse was roaring in my ears.

Normally, I am a pro at blood work, to the point where I barely even feel a butterfly. Not so much that day. I must have jerked as the phlebotomist went to remove the needle, but it's not like blown veins are not something I'm used to. (That's why my doctor suggested the power port in my chest.) I felt dizzy. The phlebotomist told me to stay in the chair while she grabbed me some juice. Typically it's not a big deal, but I guess my body was irritated about giving up nine tubes of blood before breakfast.

I tried to be a "normal" and thanked her for the juice. Two seconds later I tried to take a sip, bumped the ulcer on my face, which immediately started bleeding, and poured the mini-can of apple juice mostly down my shirt. I got a tissue, applied some pressure, tried to go crawl under a rock to die, but my partner was waiting. He sat so patiently while I tried to collect myself. I got the bleeding stopped, and used the few tissues I had left to mop up my soaked bra, and chest.

I wish in these moments I could remind myself that "normal" is a setting on the dryer, and everyone who was staring at me had their own bad days too, but the weight of my previous conversation with the doctor was heavy on my mind. They were going to get me IVIg. There was a good chance it could put me in remission, or at least quell my pain, and symptoms. I thought, "what have I got to lose?" and, "it's just another infusion," but within 24 hours of treatment, I knew I was wrong.

Most of the next two weeks were in, and out of the hospital (where I was admitted at one point), and doctor's office. It turns out the IVIg Infusion had caused aseptic meningitis. I am no stranger to headaches, I have had my share of migraines too, one lasting 9 days from elevated intracranial pressure, caused papilledema. They all paled in comparison to this pain. At one point my head, neck, back, and spine all hurt so bad I was being given intravenous dilaudid.

However, about 10-12 day after the IVIg infusion, my joints were feeling better than they had in over a year, and some of the swelling in my mouth went down too. I had to choose if I was willing to risk the pain of meningitis again in order to get that tiny window of payoff. I'm still on the mend from a hospital acquired infection, but here I go again… Chemo is this Friday, and IVIg is about two week from then. It will be two doses this time, given over two five+ hour infusions, two days in a row. I won't lie and say I'm not scared, but I'm willing to risk it once more just for the hope of a bit more time feeling "normal."

Fingers crossed!

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.

Coping with pre-op fears

I’ve known for the last month or so that a port was going to be necessary for me to continue infusion therapy, and stay alive. The veins in my arms are shot after a year of getting pumped full of Infliximab every four weeks. Discontinuing infusions isn’t a option if I want to keep walking, and try to ease the symptoms of Behçet’s Disease on my body. The symptoms are quite severe for me, and seem to be worsening quicker than any of us suspected.

I’ve been on a liquid/soft food diet for over a month because of the swelling, and ulcers at the roof of my mouth. A 50 mg taper of prednisone, and a round of antibiotics has barely had any effect, and I’m on the max dose of Infliximab (10mg/kg body weight) already. Some of the veins in my arms have collapsed, others are too heavily scarred to be of use. So a port it is…

I’m not happy about it, although I’ve been told this will make things easier, and less painful for me in the long run. I have been distracting myself every way possible, and temporarily put on medication to keep me calm while I wait, since I was in utter panic mode. I’m a complete needle phobe, but I’m able to use meditative breathing to make it through IV insertion. A port however, is too much for me to breathe through with active PTSD. So after I breathe through getting an IV at 7:30 tomorrow morning, I’m going to be put under sedation for port placement.

Maybe I’m a fraidy cat, but me-ow, so my choice, and I’m not going to feel bad about it. Behçet’s symptoms are exacerbated by stress, so it’s better for me to ask to be put under, if it is at all a choice. 

Now, I just have to make it till the morning. 

19 hours, 44 minutes, and counting…

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…