I didn’t fail.

For the past several months, I’ve been struggling with depression and anxiety. Almost all of my mental health issues can be attributed to my declining physical health. The Cystic Fibrosis (CF) I was diagnosed with at six and a half months of age has always affected me but has been progressively stealing my life for the last two years or so. Most notably, I now wear oxygen 24/7 because I can’t take in enough oxygen on my own. There is still no cure so I have limited options. The most likely scenario is that my lung function will eventually decline to a point where my quality of life is severely affected and I will make the choice to undergo a double lung transplant with the hope that it is successful and I can get a few more years out of my life where I can breathe freely for the first time ever with the help of someone else’s lungs.

As one might guess, having mortality staring you in the face at the age of 23 is a difficult pill to swallow. It’s something my family and I always knew was coming. I have always been a very stubborn overachiever and, as such, have always been quite hard on myself as far as the expectations I have for myself and the way I speak to or treat myself are concerned. With my health now worse than it’s ever been, the pressure to do absolutely everything I can to take care of myself is immense. And I felt like I was cracking under the pressure.

Since the fall of 2015, I have become pretty withdrawn, spending most of my time in the basement TV room. I am often sad, stressed, worrying over multiple scenarios in my head, easily overwhelmed, and anxious. My appetite and sleeping habits have suffered, I’ve stopped exercising, and my motivation to do anything is severely lacking. I talked about my issues with my long distance fiancé constantly, and my parents expressed their concern for my mental health but I couldn’t seem to snap out of it on my own. The only thing I did know, thanks mostly to my fiancé, was that I needed to work on taming my inner critic because it was pretty out of control.

At the beginning of June, I met with a psychiatrist who the adult CF clinic had just brought on board for an hour-long assessment. Unsurprisingly, she believed I was dealing with depression in reaction to an adjustment I was making in my life (adjusting to the new circumstances surrounding my health, needing oxygen 24/7, etc.) and that the anxiety I had always been able to deal with and keep under control was now running amuck. I agreed that this was a fair assessment and we talked about a plan to deal with these issues. The month between this appointment and my next with her was full of anxiety and instances where I would get so anxious or worried or overwhelmed that I would get caught up in my head and have a hard time moving past it or making decisions. I would either end up crying or doing something to distract myself and avoid what was going on. That month was extremely stressful for my fiancé and I, and my parents. However, I did feel like I was making some progress when it came to recognizing when I was beating myself up as I was able to do that more often. I also had an incredibly helpful BodyTalk session that reminded me to listen to my inner guide, not my inner critic or anxieties, and to let myself sleep without feeling guilty or being hard on myself for doing so because my anxiety riddled mind needed the time to recoup.

My second appointment with the psychiatrist came at the beginning of July and was only a half an hour long which I didn’t think was long enough. She mentioned that we needed to do some work on acceptance and I recounted to her my most recent episode of anxiety. She told me about core beliefs and said that the initial or superficial thoughts I seemed to be getting anxious about probably weren’t the real source of the anxiety. Using that episode of anxiety in retrospect, we did an exercise where she taught me to ask myself what this means for me and my future over and over until I can’t get any more answers. My final answer is my core belief and is most likely what is causing the anxiety. We didn’t complete the exercise but the core belief we stopped at was: The CF is winning. This statement upset me of course, but I didn’t realize until later the significance of it. I was sent home with the homework of finding the core belief every time I had an episode of anxiety. I was frustrated after this appointment because I was impatient to figure out what was going on with me and start feeling better mentally and emotionally.

Continue reading

Breathing Peace

We breathe together,

in and out.

My breaths start to slow as I feel you match yours to mine.

My racing thoughts quiet as you stop shaking.

Two panicked people longing for home,

two pairs of sick lungs breathing peace into each other.

Patient Impact Statement

I was recently asked to submit a patient impact statement to the Canadian Agency for Drugs and Technologies in Health (CADTH) for the Common Drug Review process for ORKAMBI, a drug that treats patients with the particular gene mutation of Cystic Fibrosis that I have. This drug has now been approved by Health Canada so the next step is waiting for the individual provincial coverage to be put in place as the drug is very expensive. I was excited when I was asked to be a part of this process, even if it was just in writing, so I thought I’d share what I wrote.

My name is Cassandra Grisdale. I am 22 years old and from Melfort, Saskatchewan. I was diagnosed with Cystic Fibrosis (CF) at 6 and a half months old. There is nothing in my life that goes untouched by this disease.

CF affects many parts of the physical body. It causes the lungs to produce thick mucus which becomes a breeding ground for bacteria that causes lung infections. This, in turn, diminishes lung function and causes patients to develop a persistent cough and shortness of breath. CF also affects the digestive system. My body cannot digest food properly and because of this, I only weighed 29 lbs in kindergarten.

At the age of 5, I underwent surgery to have a gastrostomy tube inserted into my stomach so that I could be tube fed overnight in the hopes that I would be able to gain weight. Thankfully, I started putting on weight immediately, but I had to deal with the fact that I was the only one of my friends and classmates that had a “button” sticking out of her belly. As an adult, there are certain types of clothing I cannot wear because the button would be visible to others. Additionally, I had problems with the sizing of the button for my adult stomach so it was quite embarrassing when the button would leak while I was hanging out with friends or at work because my shirt would become inexplicably wet. Recently, due to issues with acid reflux, I was switched to a new style of button that has to be changed in the radiology department at the hospital every 6 months. This has added yet another recurring medical appointment to an already long list of appointments that I have to schedule other things in my life around.

As a kid, I was hospitalized to receive intravenous antibiotics at least once a year. This continued until my early teens. I was usually hospitalized for a minimum of two weeks so I became quite familiar with the pediatric ward and the nurses who worked there. I spent several holidays in the hospital including Halloween when I was 7 and Christmas when I was 12.

Constant hospitalizations make it difficult to have a normal childhood. You learn things other children don’t have to. Like how to ignore the child crying constantly from the room down the hall, or how to stop the IV pump from beeping when the nurse hasn’t had the time to come and start your next dose of drugs yet. You are forced to grow up quickly so that you can keep up with the discussions the doctors are having with your parents about your health and so that you can have some control or say in what is being done to you. You learn how to question the doctors and negotiate your way out of needles and treatments from your hospital bed. Having CF also makes you tough. You learn to put up with pain when parents and doctors convince you that it’s for the good of your health. You have to learn how to fight a losing battle against the CF, a battle you wish you had more control of.

Growing up, I spent a lot of my life trying to show everyone that I was tough and that I could handle the CF because I didn’t want their worry or their pity. I have to live my life knowing that it’s, most likely, going to be shorter than yours. Shorter than my parents’ lives. Shorter than my younger brother’s life. No one should have to live like that.

Now that I’m an adult living with CF, the realities of the disease are catching up to me. My health is worse than it’s ever been before. I am being hospitalized more frequently and am sometimes treated with IV antibiotics at home with the help of a home care nurse. I haven’t been able to complete any sort of post-secondary education because my poor health keeps getting in the way. I’m having to wear oxygen more and more which is a struggle for me because I don’t want the people around me or the strangers I pass during the day looking at me as a sickly person. I’m not a sickly person. Hell, I went to Mexico the day after I finished a course of IV antibiotics!

However, not having enough breath to do the things I want to do on a daily basis is incredibly frustrating. I don’t want to have to drag oxygen with me everywhere I go. I want to have enough breath to run up the stairs again. Enough breath to hike down to the dock and go fishing with my dad. Enough breath to clean the house. I am a bright 22 year old and I am in the process of applying for financial assistance because I am not healthy enough to work full-time to support myself. I want to have a life where I don’t have to constantly rely on my parents or live in their basement.

In January, my parents and I will be attending the physio program at the lung transplant clinic in Edmonton, AB. This program is long and requires my parents and I to find accommodations and cover the cost of living in Edmonton for 6 weeks. It disrupts their work schedules and our lives in general and it won’t be cheap.

I’m not ready for a lung transplant yet. I’ve been told by several doctors that it’s like exchanging one disease for another. There are countless complications that can arise before, during, and after transplant. I’m not ready to sign up for that yet. I’m not ready to give up on my own lungs yet. I still want to find a way to make them work for me. Maybe ORKAMBI can help me do that. Maybe it can help me avoid having to take on all the complications that can arise from a major surgery like transplant. Once I have someone else’s lungs in my body, these new CF drugs are of no use to me. That scares me so I’m holding out hope that ORKAMBI will, at the very least, give me a few more years with my own lungs before I have to consider transplant.

CF is slowly stealing my life from me. I have dreams. I want to travel and see the world. I want to work at a job I love and be able to support myself and buy a house. I want to get married and not break my husband’s heart when the CF stops mine. I only get one shot at my life. There are no second chances. It’s go big or go home. I’m not ready to go home yet. I still want all my dreams to come true. And, if ORKAMBI is approved, it could be a stepping stone for future medications that will allow my dreams, and the dreams of other CF patients, to come true while our own lungs are still in our chests.

Sleeping

The restlessness really gets to me late at night. I guess you could say really early in the morning instead. I feel almost jittery with anxiety and restlessness. I find weird things to focus on. Like picking at my fingernails or playing with the loose string on a piece of clothing. Some nights when I should be getting off the couch to go to bed I’ll just sit there for awhile. TV’s off. There’s no music playing. But I’m still sitting there in silence lost in my head. Thinking in circles. Thinking about school and travel and money and CF. Always thinking about CF. So tired of thinking about CF.

And then when I finally do go to bed I sleep for much longer than eight hours. Much longer than is necessary. The alarm goes off; all the alarms go off and somehow I can either sleep through them or turn them off and let myself go back to sleep. Every time. I can let go of the restlessness when I sleep. I can let go of the frustration and impatience with the doctors who don’t seem to know how to fix me when I sleep. The world can sometimes be a better place in my dreams. I’m not crawling out of my skin with restlessness there.

But then when my back hurts and I can’t sleep any longer and I realize what time it is I’m angry with myself for living in that world without restlessness for longer than I should have. I feel unproductive. I feel like I let my parents down so I try to hide the truth of how late I slept from them. I’m ashamed of it and I ask myself if my life is really so bad that I can’t get out of bed before noon. Then because I slept in late the day seems too short so I stay up late again and the cycle starts all over.

I thought I could just steel myself and make the decision that I’m  better than this and that I will start my days earlier and that that would make it so. But I still can’t pull it off. I thought I would be better after the day that I woke up so late I didn’t have time to do all the errands that I wanted to do in the city before meeting friends for supper. I was so angry with myself that morning and I said a lot of things to myself that I shouldn’t have. Then I cried most of the way on the drive into the city and I was not a very fun or positive friend to be out for dinner with. I felt so beaten down that whole day that I cried on the way home too. But in reality I was probably the one that threw most of the punches. I thought things would get better after that but no such luck. I thought and hoped that things would be better after the trip to Mexico too but so much shit has happened since I got back that I’ve just gone back to sleeping. Always sleeping. The restlessness and impatience and frustration and anxiety – it all goes away when I sleep. At least until I wake up and see the clock.

—–

I wrote the paragraphs above at about three in the morning this past Saturday. I’m going through some challenges with my Cystic Fibrosis and it just feels like it’s been month after month with no improvement. I’m feeling a little let down by my doctor because I feel like he’s not sure what to do with me and I feel like he’s not as concerned with some of the issues I’m having as he should be. I’ve also been waiting for several months to see a specialist that may be able to help me quite a bit and I have yet to receive an appointment letter from them as they are apparently very behind in seeing patients. I’m also only working casual hours right now and have to wait until the first week of May to find out if I got into the school I applied to attend in the fall. I seem to be in a very weird state of limbo with all of these things right now and, as I mentioned above, the restlessness, frustration, and impatience seem to be getting to me. I think writing this definitely helped.

Hospital Stays, Photography, and the Ocean Breeze

I can now say I’ve been to Mexico!

In December I booked a spot on the Tornado Hunter Mexico photo tour and I was so excited! Greg Johnson, the Tornado Hunter, is well known for taking tornado and storm pictures but he also teaches photography workshops and has done several photo tours or retreats. The trip included a stay at an all-inclusive resort at Akumal in Quintana Roo, Mexico. During the trip Greg would be teaching photography workshops and would be available to help everyone improve their photography skills. There were also a couple of days set aside to take the group on excursions off the resort to photograph some of the cool places Mexico has to offer.

In January, my friend Adrienne who had just started her own film company with the intent of telling peoples’ stories asked if she could join me on the trip and follow me around with a camera documentary-style to capture my journey as her first big project for her new company. I, of course, was all for it! We have only been friends since the summer but we instantly connected (even though she is about ten years older than me) over our similar tastes in film and photography and our fiery passions for the things we love.

The two weeks leading up to the trip now make up one of the most stressful and frustrating periods of my life. About two weeks before we were supposed to leave on our adventure I was hospitalized with a lung infection and a very low blood oxygen saturation level. I immediately reverted to the old blind determination I had used every time I was admitted to the pediatric ward when I was growing up. But in the back of my mind I was extremely worried that that would not be enough to pull me through this in time for the trip. I had been feeling pretty down for about a month beforehand – I had been in kind of a slump mentally. So, going into this infection, I already wasn’t my usual self as far as my head was concerned and now I somehow had to garner all my willpower and kick the infection to the curb in a very short period of time.

Continue reading

To Be Free

I was encouraged to post this to my blog by someone I met last summer who has quickly become an important person in my life – the sister I never had.

I want to preface this by saying that I have Cystic Fibrosis (CF) which is a genetic lung disease for which there is no cure. CF is a suffocating disease – both literally and figuratively. My life has always been restricted and dictated by CF. My physical activity is limited and I have no idea what it’s like to fill my lungs with a deep breath. I have a routine of medications I have to do in the morning and the evening and there are numerous appointments to go to. There are various pieces of medical equipment that have to be cleaned, maintained, and replaced and a never ending list of prescriptions that need to be refilled at the pharmacy.

I had a sort of epiphany recently that allowed a few things in my life to fall into place and make sense to me like they never had before. Continue reading