Sunday, 30 April 2017

From the Heart

I think this past academic year has been the oddest of all. By no means was it a bad year. But it certainly was taxing, and I did more growing up than anticipated.

My mum had a heart attack in the beginning of October. We didn't see it coming, and it came in the typical fashion with women- quietly, and appearing to be a case of the flu. Even though it happened at noon, nobody called me until 7 pm, the time I finished class that day. My mum was very clear that I was not to be told until after class, and even as I talked to my dad on the phone that night, I could hear my mum saying "she's supposed to be hanging out with her friends tomorrow, tell her to go hang out with her friends." Rest assured, I did not go hang out with my friends the next day.

Thankfully, my mum is recovering; it takes at least a year to recover from a heart attack. As soon as she could, she sent me from her hospital room back to college. My mum is so adamant that I never stop my life for her. But it's really hard to try to concentrate on homework when all you want is to be at home. And it wasn't even just that I wanted to be at home, it was that I was afraid to be away from home. I didn't want her to be alone again. I wanted to be at home taking care of my mum, helping to find recipes for her new diet and going on short walks. 

People with psoriasis and psoriatic arthritis, like my mother, are at a higher risk of cardiovascular disease and heart attacks, and my family is not an exception. It's a rarely discussed fact of psoriatic disease, but one that is prevalent and needs to be focused on. Chronic inflammation is not good for anyone's body, and we need to be more in tune to what it can mean for our health. That's why it's so important to keep psoriasis and psoriatic arthritis under control. Unfortunately, most dermatologists and rheumatologists don't screen their patients for metabolic issues such as high blood pressure, even though cardiovascular disease is the leading cause of death in people with severe psoriasis and psoriatic arthritis.

I've always believed in the power of patient advocacy and education, however I believe in it now more than ever. Looking back, there was some indication that this was coming. As a patient, you have a right to know what's going on with your health- even if it's just a quick note of slightly elevated blood pressure on your chart or your blood work beginning to show signs of insulin resistance. You also have the right to ask for additional testing for metabolic diseases, even if you don't show signs yet. These things often creep up over time, and can get out of hand very quickly.

Life has changed so much since October. I've learned a lot about life too, and I think my outlook on most things have changed. For so long, I was so wrapped up in obedience, fear, and toeing the line that I forgot to breathe, take life for what it is, and to open doors rather than close them. You have to love like there's no tomorrow. I find life to be a bit quieter lately, but because I've decided to take paths less traveled. But not only that, it's time to respect the santicity of life- and for my mum and I, that means taking time to care for the heart.

Saturday, 28 January 2017

Love's Sting

The older I get, the more my feelings on dealing with a chronic illness change. When I was a young teenager trying to cope with my new diagnosis and the severe impact of treatments on my life, I dealt with hopelessness and despair on nearly a daily basis. As I got older I realized I needed to change my attitude about it because I knew it was something I was going to have to deal with for a very long time, if not forever. Though I naturally do still have moments of hopelessness, generally I try to stay positive about my situation. If anything, having arthritis is quite a joke between my friends and I. But ultimately, I'm honest about it with most people.

At least, that's what I thought until recently. Though I think I'm very open and honest about living with a chronic condition, I realized there is a certain population I hide it from. And it's certainly the population I should not hide those things from. That group would be the people I've dated.

I think the temptation to come off as perfect and having no issues is so strong when you're beginning to date someone. The thought of telling them you have a life long illness can be very off putting. Personally, I do mention I have arthritis, but often don't go terribly into detail. I'm afraid of scaring the poor guy off, because it seems the general opinion is that most people want to be with a partner who is healthy. I can't speak for everyone, but sometimes I feel embarrassed or not good enough- who would want to be with a woman who is in constant pain, has issues with her hips, and takes medications that are outrageously expensive? Will he run off, thinking he'll become my caregiver? Will he automatically write me off because I'm not in perfect health? Is he going to assume that one day (in a very, very long time) the medication or deterioration to my hips will mean we could never have a child (truth: most women with arthritis can successfully have children)?

But those are my thoughts- not his. You can't tell what the other person is thinking, and it's never usually as harsh as you think it will be. If the person truly loves you, they will understand. It doesn't mean it won't be hard on them and they won't struggle, but they'll try. It doesn't mean everything is going to be perfect, but it means true love deserves a fighting chance.

I'm quite fortunate that my boyfriend is so supportive. I wish everyone felt so supported and accepted by their partner.

I do highly recommend that when you start dating someone new, you ease into telling them about it. It can be hard to receive it all in one sitting. Maybe not the first date, unless it comes up, but soon after. It's a really good way of seeing someone's true colors early in a relationship, but I also think it's something they should know. I would want to know if the person I was dating was dealing with a chronic illness, I'd hope they would feel safe to confide in me and not hide such a part of their life.

Dating is a tricky thing. Dating with a chronic illness is even trickier. But it's possible, and there's no reason why you should ever feel discouraged. There are times it will be hard, but what relationship is perfect? You don't love someone because they're perfect, you love them knowing that they are not.