When faced with any condition (or any question for that matter), the internet can be your best friend and your worst enemy. Information is boundless and overwhelming. Treatment plans are varied and confusing. Your prognosis seems both hopeful and dismal. It is very important to try and stay positive in light of all of this, sift through the usefulness of it all and find the right fit for you. These days we are bombarded with quick fixes for everything and it becomes harder and harder to find a plan that has the balance your body really needs and one that is specific to your condition. I have found that the most comprehensive view of lupus - the symptoms, medications, treatments and a balanced plan of how to combat it is the Norton Protocol as explained by Julia Liu. Her e-book is affordable, easy to understand, and the treatment seems to make the most sense to me. I am going to try it, but I haven't gotten all the necessary things yet, so when I do, I'll let you know how that goes!! In the meantime, it's a good read - even if just to understand the condition better. Go to: http://lupusbible.com/.
No matter what the treatment plan is though, one thing that seems to remain constant is the role of good nutrition. From the very beginning, my mother (aka lupus warrior extraordinaire) was searching for whatever information she could find. When I was first diagnosed and put on a drug called Plaquenil, she felt there had to a safer way to recovery without all the harmful side effects of medications. She immediately began researching alternative ways to cure lupus and trust me, she has not
stopped to this day. When she learned that there were a significant
number of persons who went on an all raw food diet/whole foods, she immediately
became a pro at juicing, shake-ing and salad-ing to get me better! The
kitchen and I are not the best of friends and waking up extra early to
prepare a day's worth of food before heading to school was way down on my to-do list. It was far easier to plan a trip to KFC for lunch and stock up with Doritos and soda for study sessions. But my mother's commitment to this treatment plan gave me the push I needed to at least try and make it work.
So off to school I went with a huge cooler in the trunk of my car with a green juice (callaloo, cucumber, apple and ginger), a red juice (beetroot and carrot), and a shake (oats, papaya, almonds, pumpkin seeds and sunflower seeds)- all sweetened with pure cane juice. Nomnomnom!! There was also a salad and she was always trying to find ways to make it more and more interesting. In between, I was to try to have only fruits and water. Yes... I was in university and my mummy was packing my lunch. But, I knew I wouldn't keep up with it and it is thanks to her that I did! For one month straight, I ate an all-raw diet and never cheated. I came off my medication and at the end of it all my blood tests showed great improvement. I had so much energy and felt fantastic! Thanks Mom!!!
My doctor was pleased with my results, but not so pleased about the non-adherence to the medication. He was worried that it was too early to detect how serious it actually was. So, I went back on the medication with the firm resolve to continue eating properly. I have, to an extent, continued to eat properly. Now that I am married, my husband is very supportive by encouraging me to eat well and making sure that our meals don't include ingredients that could aggravate the lupus. There is the occasional craving for something terribly unhealthy and I indulge myself from time to time (shhhhh, don't tell him!). But you know, I find that the healthier I eat, the more I'm disappointed when I give in to a craving. Not disappointed in myself; it's just that sometimes the food doesn't taste as good as I anticipate (except KFC...why Lord, why??). I would really like to get to that stage where I am not tempted by anything that I know is not the best for me, but it is not easy! I last for a couple days of good eating and then tell myself I've done well so it's ok to cheat a little. A little then turns into a little more and the rest, as they say, is history. Discipline is a hell of a thing and I know I need more of it. Again, support is pivotal. Many times, it's because I don't want to let down those closest to me by making poor choices, that I stick to healthy habits. Of late, I think I have been better, but there's always room for improvement. My goal before the end of the year is to do another month-long all raw diet. Before December, please ask me if I've done it yet, because it was definitely a step in the right direction and needs to be revisited.
Something that has really helped me with good eatin' is getting a NutriBullet as a wedding gift, thanks to a dear friend (you know yourself chica ;-). Whenever my mother was juicing and blending, there were so many different parts of the equipment to clean and a lot trash left behind (especially from carrots). While they did a great job at extracting juice (which still blows my mind), the NutriBullet is super quick and easy. Everything gets pulverized to an easy-to-drink form and there's no waste of anything. You're using every part of the fruit (without the seeds), vegetable or nut and you can drink from the same cup you blended it all in. Part of the annoyance with eating healthy is the preparation time and cleanup time. It just always seems so time consuming (again, I'm not fond of the kitchen). But with the bullet, things are definitely easier and way more doable. I find myself getting excited to create new juices because it's actually fun! The way I see it, it's a great investment because at the end of the day, you're working towards cutting down on expensive medications and treatments. Once you get it, pop into Coronation Market once in a while for some fresh local produce. You'd be surprised how far $1000 can stretch! Again, the internet gives so many options for different shakes and juices that can help to combat almost anything. For lupus patients, it is good to find those that reduce inflammation (a constant with the condition), support (NOT boost) the immune system and balance hormones. Also, it's very important to consume lots of raw green leafy vegetables. Juicing is a great way to get a large amount of these vegetables without all the chewing and not so fun taste involved. Add a little celery, orange juice, apple or lime and that can really enhance the taste! :-)
I'll leave you with a juice that is supposed to fight inflammation:
50% spinach
Piece of pineapple
Piece of papaya
1/4 lime
1/4 lemon
1/4 grapefruit
1 tbsp flax seeds
1/2 tsp turmeric powder
water
Happy juicing! Here's to our good health!!
Friday, 23 August 2013
Thursday, 15 August 2013
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.
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.
Tuesday, 6 August 2013
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!
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!
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