Some people feel that they can’t tell even their families about their chronic illness. In this video, I talk about one woman who is hiding her child’s Thalassemia from her in-laws.
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So you’ve applied for a new job! When’s the best time to talk about your chronic illness with your prospective employer?
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Here’s the article from the Canadian Business Journal about the responsibility of employers to accommodate employees with chronic illnesses:
And here’s more from the Canadian Human Rights Commission about the duty to accommodate:
So it’s transfusion day! What’s the best way to prepare for it?
My Thalassemia requires that I have blood transfusions every three weeks, as do many other patients with this illness. Share your experience and tips for making the day more easily!
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My name is Uzema Jeena, and I have Thalassemia Major.
Because of this condition, I need blood transfusions every three weeks, and have received them for my entire life.
I want to start a conversation with you about living with a chronic illness.
I want to talk about how you can live a full, productive life and not be limited by your illness. Join me here. And don’t forget to visit my YouTube channel to subscribe.
I don’t know how my mother did it. Holding me, a six month old baby, with the help of a nurse, while yet another nurse tried to find my vein. Restraining me as I let out a blood curdling scream while they started my IV. My dad would drive us to the hospital in the morning and my mom would stay with me all day, while I received my blood. She would have to repeat this again four weeks later, and again four weeks after that, and again, four weeks after that.
My parents married, completely unaware that they both possessed the Thalassemia Minor gene. This meant that each of their children would have a one-in-four chance of ending up with Thalassemia Major. My mother was pregnant four times; two of those pregnancies ended in miscarriage. My sister was born with Thalassemia Minor, and I, with Thalassemia Major. None of this was known until I started to get sick. I was born a healthy, plump, eight pound baby. But soon, I started to become sick and weak.
My parents had been in Canada for only three years at the time. They brought me to several Montreal hospitals, but nobody knew what was wrong with me until I was diagnosed at the Montreal Children’s Hospital. This was the Fall of 1975 and I was six months old.
The Children’s has been my second home since then. And I’ve just said goodbye.
My dad was an airplane engine machinist at Pratt & Whitney. When he had to work the evening shift, my mother would take me to the hospital by Metro, as she didn’t drive. She would spend the day with me. At lunchtime, she would go out to the corner of Atwater and St-Catherine street and buy me McDonald’s as a treat. Dee, my nurse, would always partake of my french fries; she could never resist them because they smelled so good. Later in the day, my mother would buy me Humpty Dumpty barbecue chips from the Tiny Tim café. What a treat!
My mother was a stay-at-home mom until I was in Grade 5. At that point, she started working again, as a housekeeper at Hotel du Parc. She would escort me back and forth from home to the hospital, and go to work cleaning rooms while I was getting my transfusion. She followed this exhausting routine until I was 14 or 15.
One day, she let me take the Metro alone to get to the hospital for my transfusion. I was ten years old. I felt so free and happy. I knew exactly where I was going and how to get there — I knew the route to the hospital by heart at that point. When she picked me up from my transfusion that afternoon, on her way home from work, I felt proud. I was learning to take care of myself.
My dad sometimes came to the hospital when he was on overnight shift at Pratt & Whitney, but could never stay in the room when I was having my IV put in. The thought of my pain was too much for him to handle, and he had to wait outside until the transfusion was well under way.
There were a lot of older patients in the transfusion room, mostly teenagers. I shied away from talking to them at first, they were so intimidating and worldly. There were also some younger patients, who I felt were too young to waste my time with. But then I met Amy. She was exactly my age, nine years old at the time, and we instantly became best friends. We would sit on the same bed together and create outfits for our paper dolls while receiving our blood transfusions. We started scheduling our transfusions together, and this made them much more pleasant. My mother and Amy’s mother would take turns watching us. It was a long day. We would get to the hospital around 8:30 a.m., get our IVs put in, get crossmatched with the donor blood, receive the transfusion, and finally leave around 2:30 p.m.
As I got older, I got to know more of the patients. We were always transfused in a large room that had a couple of chairs and one or two beds. I would spend the day laughing and talking with whoever was there. It made the day go much faster and made me feel that I was not so alone. Some days, we were hysterical with laughter, teasing each other and concocting absurd scenarios to pass the time. Some days were more painful than others, and I would sometimes leave the hospital feeling like a human pin cushion, completely crushed.
Even now, a day or two before transfusions, I sometimes experience light-headedness and dizziness due to low hemoglobin levels. Other times, I feel perfectly fine. When I was in my mid-twenties, I started experiencing severe bone pain in my hips and back. This was the result of very low pre-transfusion hemoglobin. The pain was debilitating and, in order to counteract it, my hemoglobin needed to be stabilized at a higher level. I then started receiving blood every three weeks instead of four, and I am still on that schedule to this day.
When I was a teenager, I heard through the grapevine that several of the older Thalassemia patients had died. Eventually, the iron that they received from frequent transfusions would build up on their heart and liver and would cause those organs to stop working. As children, they had been told that they would live to maybe eighteen or twenty years old.
In 1980, when I was five, we were introduced to a new medication: an iron chelator that would remove the excess iron from our bodies. One of the older patients and my nurse came over to our house one evening to show us how to administer this medication. It would be delivered by subcutaneous injection and a slow overnight infusion, powered by a battery-operated pump. The nurse used an orange to demonstrate the correct angle that the needle should be inserted. The medication would be infused over a period of eight hours overnight. This iron chelator changed my life; it meant the difference between an early death and a normal lifespan for me.
The treatment was difficult and painful. We had to use this iron chelator five or six times a week with the infusion pump strapped to our bodies while we slept. Most nights, I would try to put it off for as long as I could. I could tell that my parents hated having to hurt me like that. The needle was painful. And because the injections were almost daily, the injection sites would get swollen and tender. But this is what we needed to do in order to keep me alive, so once again, my parents adhered to the treatment regimen, despite how difficult it was. My mom and dad would take turns putting the needle in my arms, legs and stomach. When I was twelve, I learned how to mix the medication and administer the injection by myself.
I continued these injections until I was 21 years old, when a new iron chelator in pill form came along. I jumped at the chance to try it, and it has given me an unparalleled amount of freedom. I credit my parents for making me understand the importance of following these treatments. Their strength knows no boundaries.
For the teenagers in the group, starting such a cumbersome and painful treatment at a relatively late age was a huge life change and a sudden burden. A lot of patients died, because it was either too late for them to be saved by the medication, or they were not able to cope with such a painful medical regimen. One patient that I knew quite well, decided to let himself die, because he felt that he could no longer continue with the transfusions and chelation therapy. It is a loss that I still see reflected in his parents’ eyes every time I see them.
Seeing these older patients die had a profound effect on me. I knew firsthand how painful the treatments were. They were extremely difficult to follow, and interfered with a normal life. At the same time, the sobering fact that some simply gave up while others just didn’t respond to treatment made me want to keep fighting because I wanted to live.
Growing up, I had a great many scares at the Children’s Hospital. In 1985, when I was ten years old, we started to hear about AIDS. Some of the patients had contracted HIV through a blood transfusion, and had eventually died. I was petrified. I had heard that HIV could remain undetectable for up to ten years. At every transfusion that I received, I would wonder if I’d be infected next.
A few years later, when I was a teenager in the early 90s, the Hepatitis C scare came along. Quite a few patients had contracted it from blood transfusions, and a few people I know are still fighting to overcome it.
Blood transfusions today are safer than they’ve ever been. Still, there is always that chance, however minute, of infection or a bad reaction. But this treatment, along with proper iron chelation, is the best chance I’ve got. And the benefits of it far outweigh the risks.
I know all too well, that were I born a generation earlier, I would not be alive today.
Today, I received my last blood transfusion at the Montreal Children’s Hospital (my subsequent ones will be at the new MUHC super hospital). My first transfusion at the Children’s was received when I was a six month old baby, and I am turning 40 years old this week. As I said, the Children’s was — quite literally — a second home to me. I knew the Home Care unit inside out. The nurses took care of me and became like a second family. The patients that I spent so many hours with helped me to feel that I was not alone. They understood me and the difficulty of the constant pain, the difficult game of balancing life and medical treatment. And through it all, there was humour and friendship.
All photos by Jim Royal.
You say that I am brave living with a chronic illness, but I must be even braver than you know.
I do not feel the need to believe in life after death or that some force is watching over me. I do not need to believe that everything happens for a reason. I know that everything that happens is random and unplanned and not a punishment or a reward.
I do not feel the need to believe in the fantasy world of chakras, astrology, or the fevered imaginings of Deepak Chopra. I do not believe in heaven or hell, I believe that we choose to make our own lives heaven or hell right here on Earth.
I am also brave for the following reason. I am unable to have children of my own. When others tell me about their children, how wonderful they are, how annoying they are, how proud they are of them and how they have never felt this much love before, I have to live with the knowledge that I will never experience that myself. I will never have that. And this pain is constantly with me, every single day. I have to face this in my everyday life, at community celebrations, at work, on Facebook, from friends, strangers and colleagues. I am so happy for them, but because I’ll never have that, it tears away at me and, to be honest, it fucking HURTS.
But I’m facing it. I don’t have a need to blame any supernatural force for punishing me and not giving me children. I definitely don’t have a need to go to a psychic or a medium for help. I’m not following any superstitions, or going to a homeopath out of desperation. I’m not holding out any false hope.
I’m facing the situation and being honest with myself and trying to move on. After all, I have an amazing husband, family and friends, a wonderful place to live, enough food to eat and enough money to travel. Most vitally, if it were not for advances in science and conventional medicine, I would not even be alive right now. I would have died when I was a teenager. The fact that I am in my 30s right now is nothing short of a miracle (the scientific kind, of course). And that is a hell of a lot more than most people have.
After reading my last blog post, one of my best & dearest friends asked me what I thought about the law of attraction and whether that fit into my philosophy.
Here is my answer.
I do believe that thinking positive thoughts, and taking positive actions (having good energy) affects us as individuals, as well as the people around us. However, I don’t believe that the universe is at all aware of us.
Earth is a tiny mote of dust in a vast universe and we are but tiny specks. We have the power to make decisions that have a positive outcome on our lives, but we cannot control the cosmos.
We have a connection with the universe in the sense that we are an amazing (but minute) part of it; indeed, the ingredients that make up our bodies are the same ingredients that make up the cosmos. Just as we were born and will one day die, the universe was also born, and will one day die. We are a part of it all. As Carl Sagan said “The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of starstuff.”
Likewise, I don’t believe that the universe is at all aware of our thoughts and our actions. I don’t believe that the universe can control the relatively insignificant aspects of our lives…however, I believe that we, as human beings can and do.
I do not feel bad that the universe is not conscious of my presence. It is enough for me to know that we are a part of the universe and are the lucky ones who actually beat the odds and were born.
We are insignificant compared to the cosmos as a whole, but are significant to those whom we surround ourselves with. The relationships we have with others and the way we treat our fellow humans is most important, I believe.
That’s what I think.