The Courage to Accept Change

I was at the end of my second year of university (University of the West Indies, Jamaica) when I was diagnosed with discoid lupus. At that time, I was studying psychology and was an active member of performing arts groups doing singing, dancing and playing cello. I WAS ALWAYS BUSY. If I wasn't in class, I was studying or doing coursework or at some rehearsal on and off campus. My family and close friends were always trying to monitor everything I was doing because they felt it was too much. I remember one time preparing a speech so that I'd have an answer as to why I had taken on preparing for yet another dance show to assist with a friend's final year project. I knew their hearts were in the right place, but I loved every minute of my haphazardly-scheduled and hectic life. It was exhilarating. You can imagine the shock when I told them at the start of this summer that I was taking time off and would not be working. Almost all of them said "Reeeeeeallly?? You??" Throughout this journey, they have constantly been checking up on me to make sure I'm doing everything to get better, so I think they're happy to know that I'm finally listening to them and "un-busying" my life as much as possible.

There are a lot of changes that have to take place and that will inevitably take place if you have this condition. As an autoimmune disorder, the immune system becomes overactive once it feels the need to take action. As a result, white blood cells produce antibodies that feel the need to destroy your healthy cells. This means it is very important not to get sick. If a virus is going around, don't catch it! Easier said than done right? I was never one to get sick very often so I've never really taken extra precaution when around people who are sick. In my profession, I have to be in close contact with children who, at the drop of a hat, might sneeze on you (the darlings). It's sometimes a matter of retroactive control, e.g. having hand sanitizer, disinfecting areas that they have touched or simply washing hands after contact. There are some who have to go to the extent of wearing gloves and face masks to protect themselves in public areas. Don't assume they're bleaching - they might just have lupus.

Another major change is limiting your exposure to the sun because of what is called photosensitivity. How I now understand it, when your skin is exposed to the sun, certain proteins are produced and the aforementioned antibodies rush to the "rescue" to fight them off. This leaves a rash on your skin. I get what's called a butterfly rash across my nose and cheeks. Sometimes it extends as far up as my forehead leaving scarring and as far down as my jaw. (Makeup tip: The best coverage for me so far has been Iman concealer, foundation and powder. Confidence tun up!) 

But, it's not just about the sun. It's about exposure to ultraviolet rays, namely UVA (which ages) and UVB (which burns). Now, this is some info I got recently. I had always thought that once I have on sunblock with a high SPF, cover my skin and try to stay in shaded areas, I was good to go. However, SPF only protects the skin against UVB rays and not UVA. It's important, therefore, to use broad spectrum sunscreen whenever exposed to UV rays. Maybe you can pray for a cloudy day? Not really...the UVA rays still penetrate through the clouds and can affect the skin, so cover up! Other ways to protect the skin are making sure your car windows and even house windows are tinted; wearing hats and clothes that fully cover the skin; using a conditioner with UVA/UVB protection (I did not know they had that!!); and avoiding fluorescent light (UVB rays) and photocopy machines (UVA rays) as much as possible.

This part is sometimes really difficult for me. I hate hats, I hate carrying around umbrellas because I leave them everywhere and it's not always easy to find long-sleeved clothing that is affordable, looks good and still keeps me cool. I remember being on holiday with my mother and I had been using an umbrella as protection. A man rushed up to me and (in french) said, "But Miss, it's not raining!" People decide that you're being strange because their worldview is different. Many times I have to remind myself that this is for my own good and I have to do what's right for my body, no matter what anyone else may think. So if I'm outside in the middle of summer IN JAMAICA, covered from head to toe, smelling like sunblock (love that smell by the way), in a hat and holding my umbrella when it's not raining...deal with it!

With all the changes (and there are many more to talk about), support is such a pivotal part of treating lupus (and any other condition, I'm sure). It breaks my heart when I hear of patients who say they have no support from family, spouses or friends because they just can't handle the intensity of the disease or they don't fully understand it well enough to deal with all the changes. You hear of those who get left by significant others who think they're just making excuses; those who lose jobs because their bosses can't understand how they can be so tired all the time; the friends who pull away because they can't do all the fun, outdoor activities they used to be able to do. People continue to judge because they've decided your hairstyle doesn't suit you not even thinking that maybe most of your hair fell out and you have no choice. Because of medication, your face can change and your weight might fluctuate and you get told that you're letting your body get out of control (true story). It's tough and you have to develop a thick skin. You also have to surround yourself with people who will lift you up. The ones who tell you that no matter what, you are beautiful; who will try the new vegetarian place with you because you want to cut back on meat; who will do some yoga with you because you want to de-stress; and those who will simply be there with a shoulder to cry on when it feels like it's becoming too hard to bear. Those people are out there and I feel so incredibly blessed to have an amazing support system that has been by my side and continue to walk this journey with me.  

New Beginnings

I am a teacher and a very busy school year finally came to an end in June. I can honestly say I was the most tired I have ever been in my teaching career. Not because this year was any different; not because I was doing any more than usual (in fact, I was doing less); and not because the heat was particularly intense this year. But, because my body had decided it had had enough and it was going to show me who's boss. I actually had moments where it was rejecting being in the upright-let's-get-stuff-done position. I had many moments where the mere act of talking about work made me drowsy and a change of topic to something non-work related was like a shot of caffeine in my system springing me back to life. So, I decided that this needed to be a summer break of healing with little or no work. But...I'm a bit ahead of myself. Let me get back to the reason that I must embrace a new beginning and take control of my body and, essentially, my life. Let me start with the fact that I have lupus.

I would never have thought this diagnosis would reach me. I was always healthy, very active and had no sort of telltale signs (that I recognized) that anything could be wrong. Then in April 2006, one of my locks fell out. I didn't see or feel it fall; I just suddenly realised there was a space in my head where a lock was. And then it wasn't. There was also a dark mark at the spot and a slight pain when I touched it. I didn't take it too seriously, but still thought it was worth checking out. Went to my doctor and she referred me to a dermatologist who confirmed what she thought: I had discoid lupus. A very nonchalant response from the dermatologist put my mind slightly at ease. This was not the "bad" kind. It was the easy-going, funloving sibling of the killer disease I had heard of and that had already taken the lives of two persons I loved. So, this was going to be an easy ride, right? Wrong! There is no "nice" or "easy-going" lupus. It doesn't take much for it to rapidly get out of control and affect you even further. It is certainly not a disease to be nonchalant about. Maybe this is a good point to explain the whole lupus thing.

Basically, lupus is an autoimmune disease where your defense cells (white blood cells) in your body get confused about the difference between the cells that are dangerous for you (viruses, bacteria, etc.) and your healthy cells. As a result, they try to kill them all. We generally say a lupus patient has an overactive immune system. This makes it important to avoid getting sick. A simple cold can send the immune system into attack mode. These attacks then get manifested in various ways: sun sensitivity, sores, butterfly rashes, discoid lesions, organ trouble and joint pains, to name a few. Through tests, other blood related abnormalities can be revealed. Of course, this is just a brief overview of the disease and it's characteristics. There's far more to it which I'll try to address in later posts.

It has been a roller coaster ride since my diagnosis, but everyday I give thanks that it is not any worse than it could be. This disease affects everyone in different ways and to different levels of intensity. Thankfully, none of my internal organs have been affected so far. However, over the years I have experienced severe hair loss, joint pains, fatigue, face rashes and photosensitivity (sensitivity to sunlight). I think my burnt-out feelings at the end of last term were a sign to finally knock this thing out for good. Of course, I have been working with doctors since my diagnosis, however, there are many lifestyle changes I can make to ensure good health, whether or not I have a condition. We hear it everyday; stress is the root cause of many diseases and lupus is no exception. Also, everything we expose our bodies to (whether through food, topical creams or various chemicals in our environment) can affect it negatively and in the same breath, can heal it.

I am not a doctor, but this disease has taught me so much about my body and what I need to do to help bring it to a healed state and keep it there. I would love to raise more awareness about the disease and help others who are suffering from it by sharing any tidbits I have picked up and continue to find along the way. So...I will TRY to update this blog weekly and touch on a different topic each time while sharing my understanding of this learning experience. Feel free to comment, ask questions, share stories...whatever it takes for us to garner more understanding of this condition that affects so many.

Here's to new beginnings and the start of a healthier life! 

It started with insomnia....

I couldn't sleep. It didn't help that "my" mosquitos were getting high on insect repellant and were trying to start a party...with me. But, as I tossed and turned and scratched and thought, I realised that I'm a girl with A LOT on her mind. Let's put things into perspective: I'm getting married in 6 months! And it took a sleepless night (and some reckless mosquitos) to make me realise that I need a place to put my thoughts, because they are literally taking over my mind.

I couldn't use facebook - I don't want everyone I know hearing what's going on in my head. Let's face it, my relationship status has not changed from "In a relationship" and it will be staying that way for quite a while. I'm not a huge fan of twitter and have way too many thoughts for a limited post in which I must try to strategically (and wittily) place 'at' and number signs. I can't keep up with the diary thing and as old-fashioned as I am, it's 2012. Your personal thoughts are not your own. They are the fuel that keep other net-friendly insomniacs going through the night...and day.

So, I have turned to blogging. A world I've never been a part of, but ever the interested and envious and despite having MUCH to talk about over my 27 years, I have chosen now to seek acceptance in this world. For me...for you...for any reason really. But mainly so my mind can be less full and I can sleep in peace.