RARE DISEASE DAY 2016: A Day in the Life of A Rare Disease Patient
In honor of Rare Disease Day, I’m going to show you what 24 hours of living with multiple rare diseases is like. I will be updating my status throughout the day, as I figured why not show the true impact of living with conditions that are under-researched and under-funded by simply sharing what a day in my life is like. THIS POST WILL BE LIVE UPDATED.
This MIGHT be uncomfortable because I intend to tell it how it is.You’re going to get the good, the bad and the ugly. I apologize in advance for the excessive number of posts that are about to come your way.
We ALL deserve a cure, regardless of how unprofitable it is to fund research and develop treatments for rare conditions.
*Excuse my potentially terrible grammar, it’s hard to write well when in severe pain.
Monday, February 29 – 1:23PM
30+ HOURS WITHOUT SLEEP BECAUSE MY BODY HATES ME. Damn you, pain.
I dragged my butt into an Uber since I have treatment. My Uber driver starts asking me if I’m heading to school downtown. It’s a common misconception. I’m young and I look perfectly fine, minus my oily hair because I couldn’t manage to shower (Gross? But reality, I did say I’d share the ugly), so no one could ever guess that I’m heading to the hospital for treatment and need my blood to be filtered through a machine 3 times/week.
This was me in the cab, so I’m sure you can understand why he assumed I was a student and not a patient. Sunglasses are a wonderful tool when you fail at tolerating light. They also help to hide the GIANT dark bags under my eyes. I really need sleep.
The true meaning of invisible illness. Like most people, the driver was in awe when I explained what I was heading downtown for.
Typically my dad or brother would drop me to a pickup point so I could use the TTC’s WheelTrans service to get to treatment, but they were unable to today so I Ubered. They have school and work. I’m the only one without a life. I need a lot of help. I struggle to go out on my own.
It sucks that my treatment is only done in ONE hospital throughout Toronto and the GTA so I had to trek to downtown Toronto. It’s costly to Uber, but much cheaper than a cab considering my lack of options. Rare disease means hard to access treatments. Blargh. Again, I undergo Plasma Exchange. What plasma exchange is and why I do it can be found here, in this post called “So What Is This Plasma Exchange and Why Am I Doing It?”.
This is an old photo of me at treatment. I have a portacath in my chest, which is a central line that’s under my skin. It reduces the risk of infection and saves me from getting poked a gazillion times because of how bad my veins are for access.
My treatments get cancelled and rescheduled so frequently that it’s impossible for my parents to book time off. They’ve done so many times, just to have the hospital cancel my treatment and they end up staying home for nothing. There are other appointments that they can make better use of their vacation days for! Did that make sense? I’m in a weird lack of sleep delirious place right now.
So yeah. Rare diseases. No one can fix or help you very much. So I get passed on from doctor to doctor because my case is way too complex. I’m basically my own doctor at this point. No seriously. I just tell my doctors what to prescribe at this point because they have no idea what to do with me. It’s not their fault, they want to help, but the medical education just isn’t there. And the existing literature is minimal.
I don’t mind AT ALL that I come to treatment alone. The nurses, doctors and admin here are wonderful! I’ve become friends with other patients as well – though many of them are triple my age! Plus, being at the hospital wastes 5 – 7 hours of whomever comes with me just having to wase their time. I mean my parents don’t mind the wait at all, but they do so much for me and I do want them to get a break too.
Thankfully my dad packed my treatment bag so my biggest task was really just getting changed and packing my computer/heating pad/meds. My brain is really foggy, it’s hard to think straight without sleep, so I thought I forgot to pack my meds several times. Awkward. My memory is terrible. It can really make me feel like an idiot. It’s like I KNOW I’m smart… but my brain won’t cooperate. I make so many embarrassing and simple mistakes that would never have happened when I was healthy.
Chronic illness, especially rare diseases make everything so much harder than they need to be. There’s no fix. My body doesn’t care what day or time it is. It’s gonna do what it wants. That’s what makes being a sick student so difficult.
Monday, February 29 – 11:50AM
I HAVE BEEN AWAKE FOR 25+ HOURS BECAUSE OF PAIN. I may or may not be losing my mind. Just a little. I need sleep. I get weird if I don’t sleep. Being unable to sleep only makes my pain and other symptoms worse… as if they weren’t already unmanageable! I’m in a strangely good mood nonetheless. It must be the lack of sleep.
So I have treatment today for the root cause of my whole POTS, Gastroparesis, Dysautonomia disaster. I hope it doesn’t get cancelled as we get closer to my appointment slot. My body is crashing so I really don’t know how I’ll make it to treatment and what kind of side effects Plasma Exchange will bestow on me today.
Oh yeah, my Dysautonomia is autoimmune mediated. Plasma Exchange is used to remove the antibodies from my blood. I’ve actually written a lot about my treatment and how it helps my POTS, Gastroparesis, Neuropathy and other Autonomic Failure symptoms in this post called So What Is This Plasma Exchange and Why Am I Doing It?.
This treatment is experimental and rare – but it is what gets me out of my wheelchair and able to walk again.
I got to visit the Game of Thrones Iron Throne without my wheelchair thanks to Plasma Exchange. These photos were taken 6 MONTHS apart!
As in… I was wheelchair bound. And then I did treatment for a few months and was back on my feet again! Yeah, I had to give into trying anything and everything to get better – even though it was experimental. There’s too little research on my condition because it is so rare, so I figured why not be the guinea pig for those with my condition!
Plasma Exchange has given me my life back. Unfortunately, this treatment is severely underfunded, which isn’t uncommon for rare diseases, so I am unable to get all the Plasma Exchange that I need.
So yeah, my treatments started getting cancelled. But then they started getting me in more often again and I began recovering! But now I’ve been getting cancelled again… It’s been a rollar coaster of a year. It’s tough to go back and forth to thinking “I’m independent again” but then it’s like “NOPE sorry you’re in your wheelchair again.”
Because my treatments are often cancelled, I relapse. My condition is progressive, so when treatments stop, my condition progresses again. I am dealing with a difficult relapse right now. I was finally doing better, again, but because of the cancellations, I have reverted again. It is tough knowing that the answer is right there – my ability to walk and be independent again is so close – yet so far away.
Monday, February 29 – 10:02AM
So yeah, I’m downstairs, and right now, I’m sitting on the air mattress in our living room. My rare diseases are so disabling and unmanageable that we have a permanent bed in the living room. Take that in. This is the state that many palliative-care terminal cancer patients are in. You wouldn’t think a long term disease could do this to a person, especially a person in their twenties.
But rare disease knows no age. Anyone and everyone could get sick. I mean, it’s kind of strange that people don’t think that young people can get sick when there are literally hospitals just for children.
A lot of my life is spent on this mattress. Lately, I’ve been having a hard time concentrating and comprehending so I’ve been watching reruns. It’s hard to focus when I have eight trillion symptoms.
I just sit or lay here for hours, day in, day out. My parents are wonderful for making sure anything I could possibly need is within an arm’s reach.
There are many days where I only get up to use the bathroom because I don’t have any energy to do anything else. I have spent months living on this mattress, day and night. Some people think that it’s fun to be able to stay home and watch TV all day. I can assure you that it’s not. It’s been four years of this nonsense for me.
There’s so much that I want to do, but can’t manage to. You can only watch so many TV shows and movies before boredom strikes. I used to be an active student before I got sick. I was doing two undergraduate degrees, volunteering and doing teaching placements as well. Now… I try to do online courses, but on a day like today with all the pain and being awake for 24+ hours, getting work done is impossible. I spend a lot of time doing nothing.
I’ve been having a hard time adjusting to being so dependent again, so the TV show Scrubs has really been making me feel less alone. It’s what I’m watching right now. I mean, the theme song lyrics are literally “I can’t do this all on my own, no I’m no, I’m no superman.” Sick or not, we all need to lean on each other. And that’s okay. Needing help is okay.
To say that my rare diseases have impacted the lives of my family would be a true understatement. It hasn’t simply made an impact, it has drastically changed our household.
Right now, as my parents are at work, they’re working knowing that I feel absolutely horrible and that I haven’t slept but there’s nothing that can be done about it. I can’t imagine that’s easy. My mom worries that I’ll fall down the stairs carrying all that stuff considering my whole blood pressure issue.
My family is wonderful. My parents and brother do just about anything and everything for me. I need help with simple tasks, like getting a glass of water or heating up my food. Sometimes I need them to run upstairs and grab something that I’ve forgotten, which is just more work for them. But they never ever make me feel bad about needing help. I have severe diet restrictions, gluten free and dairy free, which means they have the additional task of cooking specific food just for me.
I am thankful to have such a supportive family.
Monday, February 29 – 9:04AM
I’ve given up on sleep. I know when I’m fighting a losing battle. The pain is getting worse which is only worsening my nausea. It’s terrible when you have to puke solely due to the intensity of the pain. My muscles that are wasting, and I have severe nerve pain.
There’s only so much Percocet, Oxycodone, Gabapentin and Marijuana can do. You’d think with all those drugs that the pain would go away, or would at least be manageable – but it’s not. I feel like I’d be in less pain if we could get the root of my conditions under control. But we can’t. I wish there was a way for modern medicine to fix me. Chronic illness shows you how limited our healthcare systems truly are.
You know what else sucks? The fact that the weather worsens my pain. Yesterday was 12 degrees and today is -7. These crazy fluctuations in the weather, as well as deeply cold days and storms make everything worse. It can be frustrating element that I cannot control has such a big impact on my body. The weather is so limiting – I’m in pain all winter but I’m extremely dehydrated and tachycardia in summer. These seasons aren’t working out so well for me.
Monday, February 29 – 8:14AM
I vaped marijuana to try to take the edge off of the pain. But it didn’t work, so I’m still awake. I’m in too much pain to sleep. And I’m still nauseated. BUT I HAVE THE MUNCHIES. Unfortunately, I happen to be upstairs (yay, this rarely happens!) but food is downstairs and if I go downstairs, I will be unable to come back up to my room. Me + Walking = NOPE.
So it’s either I grab all my pillows and stuffed animals, as well as my trusty backpack of meds, my computer, pain creams and heating pad and whatever clothes I need to wear later to take downstairs OR I stay in bed and stay hungry.
Why can’t I do stairs? Because I have POTS and Orthostatic Hypotension.
What does that mean? Well, my autonomic nervous system, the part of your nervous system that controls your automatic vital processes, is failing, which means my cardiovascular system does it’s own thing. It doesn’t work the way it should. When I stand up, my blood pressure falls as the blood pools in my legs. I either get very dizzy and feel like passing out OR my heart speeds up severely and I become unable to breathe.
To get out of bed, I need to take heart medication to get my blood pressure up, which kicks in about an hour after I take the pills. I had to see FOUR cardiologists and SIX neurologists before someone could diagnose me. These meds don’t work very well and do NOT in any way make my condition manageable. I mean, I’d do a lot worse without them, but I’m not doing too well even with them. I wish I had more treatment and medication options.
A regular person would just be able to walk downstairs, get food and come back up. But I can’t. So I need to take anything I could POSSIBLY need from my room to the living room downstairs if I do choose to go downstairs. If I forget anything up here, then I’m stuck until someone comes home.
I’ve decided to stay in bed because I still really do want to get some sleep.
Monday, February 29 – 7:46 AM
It’s #RareDiseaseDay but unfortunately my body is making me much more aware of my diseases than I want to be.
I have been awake since Sunday morning. As in, I’ve pulled an all-nighter for no reason because my is saying NOPE to sleep. I’ve been in severe pain all night. Let’s recap what’s happened since midnight.
3:35AM – WHY DO MY LEGS HURT SO MUCH?! WHY AM I STILL AWAKE? *Looks through old photos to make myself happy.* I posted this on Instagram.
Well, you see the 5:29AM and 6:10AM Snapchats of death. EVERYONE HAS WOKEN UP FOR WORK AND SCHOOL BUT I STILL CAN’T SLEEP. Basically I went out on Saturday night and pushed myself into thinking I could totally walk around – and I’ve been paying for it via PAIN.
7AM – My dad comes in my room to give me my medication (my dad is AWESOME). I need to take a bunch of meds to even be able to get out of bed. He does this every morning! I’m supposed to be 23 years old. Since I have a hard time even heating up my own food at times, my dad informs me that he made me breakfast already before he leaves for work! I MAY have treatment today, so he’s taken out food for me and packed most of my bag since it’s hard for me to do it myself.
So yeah, it’s almost 8AM now and I AM STILL AWAKE AND AM STILL IN PAIN. Wooooo RARE DISEASE DAY.