Tuesday, 26 April 2016

To The Person Who Wondered If I Am Really Sick

A photo where my invisible illness is visible.
I sleep with oxygen every night.
As someone with the often invisible illness Idiopathic Arterial Hypertension (also known as PH,) I have had small incidents of strangers who have questioned the severity of my illness. I have had strangers question why I use an accessible parking spot. It really sucks trying to justify your illness (especially when it is life-threatening) to a stranger. It isn’t an easy thing to open up about, and often time these strangers aren’t asking you about whether you are disabled or not because they genuinely care about you. They are looking for validation. They want to be "right" about calling you out over a silly parking spot. Unfortunately, when you have an invisible illness this is bound to happen with strangers.

Recently I found out that someone I know asked if I was really sick. It felt like a punch to the gut. Life with an invisible and life threatening illness is so incredibility complicated and painful. I don’t understand how someone could question the validity of my illness. I figure if one person has questioned my illness, other people may have also wondered how serious it is, and how it impacts my life. Their comments made me feel extremely deserted.

I may look like a vibrant young woman who is just on the cusp of starting her adult life, but looks can be deceiving. Although I may not look ill, I have received a diagnosis. I have seen many specialists; I have gotten second opinions. My diagnosis shouldn’t be up for debate, but apparently it is. Pulmonary Hypertension is an invisible illness to the naked eye, but there are many indicators that I am sick to someone who understands the disease.

Majority of society doesn't know what signs and symptoms to look for to indicate that I have Pulmonary Hypertension. Mainstream media often depicts someone as being sick as looking pale, frail and bald. However, this isn't always the case for determining how serious an illness is. Many invisible illnesses can be well concealed, especially with the help of make up. Not only is my illness well hidden, but so is my disability. A symbol of someone in a wheelchair is often used for accessible parking spots and bathrooms, even though there are an array of different disabilities (including invisible ones.) Because of this, society weighs so heavily on being able to visibly see a disability in order to believe its validity. Regardless, there are still many different disabilities that do not require a wheelchair, or any visible medical equipment.

I can easily cover up how sick I am- to the point that many doctors ignored the fact that I was heart failure before being diagnosed. Pulmonary Hypertension isn't diagnosed through blood work. It is diagnosed through a process of elimination. For the person who doubts my illness, I can ensure you that I went through a plethora of invasive tests to receive a diagnosis.

At one point I had so much radiation exposure the technicians running the various x-ray, MRI and CT scans turned me down for another test, fearing it would be too dangerous. However, a specialist demanded that I had another CT scan, even though I had several in the past 24 hours, and even more in the last week and month leading up to my diagnosis. Dozens of vials of blood work was also ordered to rule out other underlining diseases, such as HIV.

The most invasive and effective procedure for diagnosing PH is called a Right Heart Catheter (which I had on Christmas Eve in 2013.) For this test, a tool is placed in a vein in either your groin or neck that leads to your heart. Mine was placed in my groin and the tool eventually made its way up to being directly in my heart to measure the pressure my pulmonary pressures. I was completely awake for this procedure, and was only given a small numbing in my leg. This test confirmed that I did indeed have a high pulmonary pressures, and I was officially diagnosed with Pulmonary Hypertension.

If you try to walk along side me, you may notice that I need to slow down, or may have to try and catch my breath while speaking. You might notice me gasping for air if we had to walk up a hill or some steps. People with PH are often out of breath by the time they reach the third step in a flight of stairs. I may look perfectly healthy, but I have a lung- heart disease. Those are two very vital organs that needed to do the most basic of tasks that are often taken for granted, such as going up the stairs, or bending down to tie your shoes.

Being short of breath was actually one of my first noticeable symptoms. I had my first symptom in Fall 2013. From there my symptoms progressed at an alarming rate. I was diagnosed quite quickly, as most people wait 2 years for a diagnosis. However, by the time I was diagnosed I was told that I was somewhere between a stage 3 and a stage 4.  Even though I was on the verge of dying, I still didn’t look sick to trained professionals (which delayed receiving a diagnosis before the progression of the disease kicked in.) If I didn’t received medical intervention when I did, I am not sure how much longer I would have lasted. In the weeks and days leading up to my hospitalization, I would wake up gasping for air. I had started to stop breathing in my sleep.

Pulmonary Hypertension doesn’t just make you short of breath; it narrows the arteries in your lungs. This makes it more difficult for oxygenated blood to be pumped throughout your body, causing an overloading in the heart as it desperately tries to pump blood. All this extra work causes heart failure. A symptom of PH is having an elevated heart rate- many people with PH experience a heart rate similar to someone who has run a marathon while doing a simple task; such as walking, or cleaning the house.  Many people with PH (like myself) also suffer from lower than normal oxygen saturations and dyspnea. Having low oxygen satuations also causes someone to tire very quickly because of how hard their body must work to accommodate.  Perhaps these aren’t visible symptoms, but that shouldn’t make the seriousness of an illness illegitimate. These symptoms are serious, and can escalate the progression of the disease, and can lead to organ damage and failure.

There is a huge difference between whether someone looks sick, and whether someone is sick.
Just because someone looks healthy, that shouldn't dismiss their diagnosis nor their symptoms. I can only assume that the uninformed comment about whether I was sick or not was influenced by how I appear on social media. My Instagram account is largely photos of cafes I visit, my dog, my boyfriend and little adventures I go on. Although having a life threatening illness dictates how I live my life, it does not define me as a person. I don't want to document my illness too heavily on social media. As such, I don't include many pictures of me at the hospital (although I do include them from time to time to help raise awareness for PH.) I also don't include many pictures of me wearing oxygen, or taking medications. I don't want people to pity me, or assume I am trying to get attention through my illness. Social media is also a great way to edit your life; you can only show what you chose to share. I may have a picture of me on a hill smiling, but that doesn't mean I wasn't gasping for breath, and had to take breaks to get there.  For me, I only capture what I want to remember, and what I want my friends and family to remember.

After my diagnosis I was so terrified to enjoy moments in life. I was scared that if I laughed or smiled, that would mean that I was okay with what was happening. Now it seems like I have to be afraid to laugh or smile because of how other people will perceive that. I have my bad symptoms days where I am extremely short of breath, and become even more physically limited. I spend hours each month waiting in waiting rooms of hospitals and blood labs. I also spend hours each month commuting to specialists appointments. I often feel ill as a side effect of the medications I am on. These medications are not elective, I also do not great a break from taking them. I must take them everyday like clock work. There are currently no treatment options that will cure the disease I have. The medication I have will only slow down the progression of the disease, but unfortunately, it is still considered fatal. It is difficult being in my 20's and knowing that I have a fatal illness. I am at an age where I am watching more and more of my friends get married, travel, start careers and have children. I was diagnosed several months after starting a career job, and I loved working. I was saving up to move out of my parent's house. I worked with children throughout university and received a specialization in education. To think that I am faking this disease is ludicrous. 

To the anyone who isn't sure if I am ill; please consider that not all illnesses are visible from afar. Sometimes illnesses are very easy to mask with make-up, or to filter out through social media. Just because an illness or disability is not visible does not mean that it cannot be serious or life threatening. Its visibility should not equate to its validity.

Friday, 8 April 2016

PHighter Friday: Jenny Janzer

My childhood was a dream, a dream that I woke up from on April 6th 2001 as I held my parents hands, shaking in a doctors office with ringing in my ears- you know, the stuff of movies, just… not the kind you want to experience. I was only 11 years old when I was told I had Primary Pulmonary Hypertension (That’s what they called Idiopathic back then). I was stage 4 and pretty sick… the doctors told my parents there was a chance I could be dead within 6 months. This week I just surpassed my 15th year of dominating PH. I never thought I’d make it this far, but I’ve got a fighting pulse within me that refuses to quit.  My name is Jennifer Janzer. The name Jennifer means, “white wave,” or “white shadow,” or sometimes, “the fair one.” There’s a reason I tell you this because for those first 11 magical dream years, I grew up on a lake and from the minute I could, I’d spend every day in the water. I embodied my name- white wave. My mom called my sister and I her little fish. We would snorkel, just lay in the water, rock hunt, swim out over the weeds to sandy spots or catch frogs and turtles while swimming amongst them. I played in the lake, I bathed in the mud, I was an earth-kid, claiming Mother Nature as one of my nurturing parents. April 6th 2001 I was told I would not be able to swim ever again. It was probably the biggest blow they could have given me at that time. I also had to start on an IV pump right away, which would pump a drug called Flolan into my chest. I had no idea what this meant and went to sleep for the surgery thinking when I woke up, I’d be fixed, not attached to a machine that my life depended upon.

This change skyrocketed me into maturity. I no longer understood what my peers did, boys didn’t matter, the right shoes or clothes didn’t matter, making sure I had medicine with me 24/7 mattered, making sure I changed the ice packs on my Flolan every 4 hours mattered and keeping me isolated is what mattered. My doctors upon diagnosis, whether they meant to or not, instilled a fear within my parents and I that crippled us while I gritted my teeth through middle school. I’ve blocked out a lot. By high school I realized how ridiculous some of these rules were and fought against them like a little rebel. I wanted to be normal. I was in severe denial. I sobbed while watching my friends swim every summer, sometimes sitting on the pier, watching, listlessly chatting. I lost friends at school; people would point and whisper, “there goes the diseased girl.” People feared me- people didn’t understand me.
I was pulled from gym, but actually quite ecstatic about that as I had never been good at it. I was always last for the mile run, passing out and vomiting while we ran laps. Flolan was my lifesaver, but it left me miserable with side effects. I began to call myself the “blood leopard” because of the bright hot painful red rash the Flolan left all over my body, including my face. It’s this hideous splotchy white and red rash. I still have it today. I spent so many mornings as a teen crying and frustratingly trying to cover it up with layers of caked on make up and tears. I’d skip some days of school just because I hated how much I looked and felt sicker than anything. The pain drove deep into my bones and I became severely underweight. The side effects of this medicine make me miserable. I went through a depression and my anxiety grew to the point I became agoraphobic and couldn’t leave the house without having debilitating panic attacks.

At 18, I finally sought out counseling. I overcame that anxiety and so much more. I finally then, reached out to other PH patients, for the first time, breaking my shell of denial. My life began to brighten. I saw so many other PH patients going to school or working jobs. I had finished high school and decided to try college. I’d see doctors and when they’d find out I had PH they would say, “wow well good for you for going to college,” as if they knew I could never finish, but still felt like telling me, “hey, nice try.” It may have taken me seven years but I graduated with a Bachelor in English/ Creative Writing with a concentration in poetry. Writing has been my cure in many ways. 

If I wasn’t sick I’d love to be a geologist however, out in the field, digging up rocks, feeling the earth change beneath me, measuring its growth in sandstone dunes and river-carved valleys. PH took a lot but it also gave me a lot. I learned responsibility, I learned to laugh at myself, and I learned to love every miniscule moment. I know it sounds silly but I never find myself bored anymore… the world is bursting with possibility and even on the days I am restricted to my bed I’ve learned to value it and find ways to occupy myself if even just in my mind. I’ve always had a wild imagination. Any time I’m feeling good or even “okay”, it’s a good day. I no longer carry the denial or angst or hatred I did as a young teen. I grew to accept my rash- and found the best make up to conceal it on my face- (Kat Von D’s Tattoo cover-up make up has been my life saver, I so wish I had it through high school.) As of right now I’m on or have tried pretty much every medication for this disease. My story is so long that if I keep going much longer I’ll type you a novel. I dabbled in SubQ Remodulin for 2 years, but got sicker. However, in those two years I got so much freedom from the mixing and 24 hour watch of my pump that it was worth it. Flolan saved my life again as I went back on it at age 20. I also am on Opsumit, Warfarin, Digoxin, Lasix, Oxygen and my other least favorite- Adcirca; again for the bummer side effects it gives.

I also suffer from Ulcerative Colitis, Psoriasis, Asthma, and had Graves’s disease until I got that raging hormonal thyroid scraped out.  Life hasn’t been easy but it’s taught me to appreciate everything. It also taught me the value of people, true people that care. It’s rare to find a gem amongst all these grains of sand and the select support system I have I couldn’t be more grateful for. They make life worth living. I’ve found other things I love- music, for example. I don’t even care about what I look like anymore or who thinks what of me, I’ll drag my o2 tank right into a punk mosh pit, I’ll haul it around while I dance until I can’t breathe at folk punk shows and rock n roll festivals. I may look ridiculous, sometimes I get weird looks or rude comments but I feel strong. The more I smile, the better I feel. I also found a love in unsuspected places- abandoned buildings. Maybe I feel a connection with them but there is something exhilarating yet calming and just “right” about visiting them and photographing them. I can take the grimiest looking building and turn it into art with the right lighting and angles, or take a decayed peeling rusted post and showcase it’s abstract beauty, forcing people to look at things they would probably never think twice about. Forever, though, writing will be my special outlet to the constant pain PH produces and the constant fear, guilt, and anger it brings into my life.

Speaking of fear, since I was 11 and learned exactly what a lung transplant was, and had to listen to exactly what the surgery entailed, it has been my biggest life fear… and now it is my reality. My family was not ready for this; they have been my biggest support system. If it weren’t for them I wouldn’t be where I am right now. My mom gardens and when I was younger we had to come up for a new name for transplanting flowers because I couldn’t even hear the word “transplant” without having a panic attack. I’ve come a long way since that, but I’m still terrified, and I now need new lungs or I will most likely be dead in 1 to 2 years- or so my doctor said. Yeah, I’ve heard that before, DUDE, but I’m a WARRIOR and I don’t plan on letting this disease defeat me anytime soon. Life has given me a lot of lemons. And I don’t sugar coat it, no, I’m not about to make some lemonade. I eat that lemon, rind and all and spit the seeds out to the sky, grinning.

So, as much as this next step scares me, as much as I shake at night, and quietly sob through every morning, I will get through this, because like everything else I have to and I do. Looking back at what my name means, I now more so embrace the idea of the white shadow and the fair one… fair however, as in I keep a balance in my life. And white shadow as in, I will bring light to even the darkest corners I find myself in. SO! Bring it on, body! You may be trying to kill me, but I am not letting that happen anytime soon!

You can find me/my art and writing on these social media sites:

gofundme for my double lung transplant: www.gofundme.com/2bp6gthb
Instagram: @mostpulp
Tumblr: mostpulp.tumblr.com
Etsy: mostpulp.etsy.com

Tuesday, 5 April 2016

Subscription Box Review: Be Brave Box

This is my first subscription box review. I hope to do more in the future, and can hopefully have a give away at some point. I decided that I wanted to start reviewing subscription boxes because they seem like a great idea for people with chronic illness. When I was diagnosed with PH I was sent so many lovely flowers. Unfortunately, I had to throw out of the beautiful flowers that my friends and family sent me. As someone with a lung condition, it didn't seem like a good idea to have flowers. I felt so terrible because I knew that people who cared about sent me those flowers to let me know that they were thinking of me. Even worse, I know that they spent a lot of money on me. (I used to work at a flower shop and know how expensive arrangements can be.) I think that subscription boxes can be a great alternative to gift to someone with a chronic illness, or to treat yourself to. My best friend Melissa got me a 3 month subscription box for my birthday and I absolutely love getting a surprise each month! (Thanks Mel!)

Be Brave Box Review

Taylor, the founder of Be Brave Box
The Be Brave Box is a bi-monthly Canadian subscription box. It is a subscription box that is aimed towards people with chronic illnesses in the hopes of brightening their day. The box is said to be filled with about 5 surprise items that surround the overall theme of Be Brave Box.

Unlike other subscription boxes, the Be Brave Box was started by a 16 year old named Taylor and her father. Taylor has a rare and genetic form of Chronic Kidney disease, and was diagnosed in November 2011. She received a kidney transplant in August 11th, 2015 from her father. After her transplant she was house bound for 6 weeks because her immune system was suppressed. During this time she brain stormed the idea of the Be Brave Box. Needless to say, this box is created for people with chronic illness by someone who understands what it is like to have a chronic illness. Taylor knows what it is like to be in a hospital for days or weeks,  and the hassle of going to constant appointments, and the waiting that is involved for every appointment and medical procedure.

Taylor has stated on the Be Brave Box website that "There are always going to be good days and bad. I want Be Brave Box to be another good part of life because we just need more good in our lives."

Products received in box:

- Postcards: Three post cards made by a Canadian artist. Unfortunately, the artist is not named so I cannot credit them.
- Bracelet: Be Brave Bracelet made by Magic Mixes. The bracelet incorporates ancient Chinese symptoms that are believed to bring good luck, healthy, and protection to the wearer. The bracelet also contains Blue Howlite beads which are believed to be calming, and to help provide strengthening energies.
- Tea and Honey: Three sticks of honey, and three bags of Stash tea in pomegranate raspberry green tea, chamomile, and licorice spice.
- Bottle Cap Key Chain: made by a young lady whose daughter has Blouts disease. She creates bottle cap key chains to raise awareness for Blouts disease and other rare diseases.
- Lip Balm: Natural gingerbread scented lip balm made by HappyBeeLipBalm on Etsy.

Packaging: received in an oversized envelop sent through Canada Post. Items wrapped in red tissue paper with confetti sparkles. Personalized Be Brave Box sticker held items in tissue paper. Came with a product overview of what was in box, along with a welcome postcard from Taylor.

- Canadian: $21 CDN for a one month subscription, shipping included. 
- International: $29 CDN for a one month subscription, shipping included. 

Over all thoughts:

The items in the Be Brave Box that I recieved
I think that the Be Brave Box is an awesome idea, and something that is needed within the chronic illness community. I admire Taylor for being so young and so ambitious along with all of the other obstacles that she faces. (I'd also like to mention that her website looks very professional!)  The packaging looked very pleasing, along with the card that detailed the items in the box. I like that this box is made by someone who understands what having a chronic illness can entail.

My favorite products are the bracelet (because of its positive message,) the honey sticks and the lip balm (it smells amazing and goes on light but offers a creamy moisturizer to the lips.) I really enjoyed that a lot of the products were made by independent people. As someone with a rare disease, I also appreciated that I got to learn about another rare disease through the key chain. I could see a lot of my other friends with chronic illnesses enjoying these items as much as I do.

I send a lot of postcards and letters to some special friends that I have made online who also have PH. The postcards contain some encouraging words, so they will be great to send out to any of my friends who are having a challenging time. The post-cards have no formatting on the blank side, and the Canadian artist is unnamed. As someone who went to art school, I really wish that I could credit the artist. I like that this box will encourage other people with chronic illnesses to send old fashioned letters. I have made a few pen pals through this experience with PH and I absolutely love moving away from technology, and sending some good old snail mail.

I believe I received one of the first Be Brave Boxes as it only launched in the new year, and is offered on a bi-monthly basis. Overall, I really enjoy the message and the theme behind this subscription box. The fact that it was created by a 16 year old is even more impressive. I thought that the items in the box fit the overall theme and message that Taylor was trying to convey, and I could see this box bringing a smile to someone's face.

Many people with chronic illnesses gear themselves towards more natural products after diagnosis. I thought that the fact that the box contained honey, and a natural lip balm along with a bracelet that contained a back message about a Chinese symbol for strength was very well thought of, and something that other people with chronic illness could enjoy and feel safer using. I would have liked to see organic loose leaf tea instead of Stash tea, although this might reflect more poorly on me than the actual box. I am a bit of a tea snob, but once you have loose leaf tea there is no turning back!

I know I got excited when I received it in the mail (it shipped fairly quickly as well.) I think that the Be Brave Box has a lot of potential, and I can see it growing in the near future. Thank you for letting me review the Be Brave Box, Taylor! It was an honour to speak to such an inspiring, young business woman!

To learn more about Taylor and the Be Brave Box please visit and follow the sites below:


*If you would like me to review your product or subscription box please contact me at phightagainstph@gmai.com

Friday, 1 April 2016

PHighter Friday Follow Up: Janeris

*Janeris' original post can be found here.

I have been doing great. It's been almost a year since I changed from an IV therapy to pills only. I have remained healthy despite being on a really dose of the new medication. My recent echos and pulmonary tests show so low that they can't be detected. That means my pulmonary pressures are so low there is no concern of the PH being active. I am active. I love going to the gym. The new drug requires me to eat every 8 hours. That on top of my regular meals has caused me to gain about 10 lbs in this past year. I am finding myself struggling to stay focused on eating healthy. I know that eating right has kept me healthy. So I have to always focus on maintaining a healthy diet. Other than that, my life has been amazing. I'm in the middle of 2 adoptions and am very happy. Stress is minimal. I see myself improving every day. My greatest pleasure is being able to motivate people around me to find their healthy place. It has been 7 years since my diagnosis. I'm hoping to one day not need medication.

instagram @mycleancuttingboard