They say, "Sticks and stones may break my bones, but words will never hurt me." I think I beg to differ. Even to the strongest among us, words can truly hurt and cause a pain that takes time to get rid of. I've mentioned before that with having this disease, you have to have thick skin; because as much as there may be people rallying around to support you, there are people who really don't think before they speak. However, in their defense (well...some of them), they might not know that their simple comment can be hurtful simply because they don't understand your condition and how complicated any disease can be. This is why awareness is so important. And not only for family and friends who are more intimate with your experience, but for those with whom you regularly come into contact. I must say I'm quite happy that I had to search for most of these comments online because I have not been the recipient of many unpleasant comments or questions. Sadly, there are many patients who have. Let's try to understand why these five comments hit hard:
1. "But you don't look sick!"
When we have a cold, there may be a runny nose or sneezing and there's no doubt you're sick. As human beings, I think we like to have those measures of proof that there's something wrong. It makes us more comfortable to accept the information. I have mentioned that some of my symptoms include scarring on my face and hair loss. It makes it kind of obvious that there's something that is not quite right. However, for many lupus patients, there is nothing physical to show that they are sick. You might say their illness is invisible. There's no visible indication that something is wrong. Sometimes there's just this pain, this weakness that you really can't explain and it's called malaise. You can still walk, but your legs feel like lead. You can still swallow, but you have no appetite. You just feel out of it. We don't need to look sick to be sick. Please try not to downplay the way I'm feeling because of the way I look ... or don't look.
2. "You're getting too fat; you need to take control of your weight."
Sigh...this is a personal one that really gets me annoyed. Why people feel it's necessary to comment on weight is beyond me. We all have mirrors and know how our clothes fit. It's not your job to say anything at all. One of the main causes of weight gain in lupus is the fact that one of the common medications is a corticosteroid (different from anabolic steroids usually referred to in sports) called prednisone. These tablets go straight to the point of pain and reduce inflammation in a flash. However, the side effects and long term effects are not pleasant. One of these side effects is weight gain, especially puffiness in the face. You could have a mainly vegetarian diet and exercise regularly as much as want, you're still going to get a puffy face. Also, steroids make you feel hungry, so you always want to eat. It means making healthier choices during these times is very important. A comment about my weight is just reminding me that I'm battling a condition and regardless of that, I shouldn't have to explain how I look to anyone. Not even my closest friends and family members comment on my weight gain, so why should someone I barely know?
3. "Everybody gets tired" or "You're just not going to bed early enough."
Fatigue is a very real thing. It's not something that is easily fixed by sleeping more or being less active. It is an ongoing feeling of extreme listlessness that nothing seems to help. No amount of caffeine, sleeping more, sleeping less, exercising, meditation, or willing yourself to have energy seems to work. Many persons, especially in the workplace, don't understand how anyone can be that tired. Because lupus symptoms are so varied, it can be caused by different things: anemia, inflammation, depression and side-effects of medication. Patients can deal with fatigue by: 1. Trying to figure out the root cause of fatigue 2. Having rest periods of 15-20 minutes after being active for one or two hours 3. Taking medication that decreases fatigue 4. Putting in place measures to get a good night's sleep (ear plugs, masks, soothing scents or music, etc.) and 5. Walking regularly to increase the amount of oxygen in tissues. We'll try to do our part to curtail feelings of fatigue. Please do your part and understand that it's not always that easy.
4. Something I overheard someone say once: "Apparently she has lupus or something and gets depressed. Hello! When I get depressed, I just go shopping!"
Seriously? Your "depression" that is easily fixed with a new pair of shoes is not what we're talking about. For some patients, lupus comes along with feelings of hopelessness and helplessness - some of which can be caused by the mere fact that you're dealing with a difficult disease. There can be spells of crying, loss or increase of appetite, difficulty sleeping, low self-esteem, and loss of interest in social activities. I've seen where quite a few people lose even close friends because they aren't themselves, they've changed too much, or they're not fun anymore. It is not always a choice to "not be fun anymore." Sometimes just the thought of being around too many people is more than one can handle. Why am I going to drag your evening down knowing that I feel the way I do? You might be able to help by sharing some of the nonprescription methods of dealing with depression. This site seems pretty useful.
5. "Oh no, you have lupus? That's what my Aunt died from!"
Thank you. I'm already quite aware of the fact that this can be a fatal disease. I know this comes rushing out of most person's mouths before they realise what they're saying, but please try not to say it. It's just one of those things we don't want to hear...at all. I don't even know how to expound on this one. Just don't say it...please and thanks ;-).
On the other hand...
A lot of people seem to get annoyed when people tell them about natural ways to recovery and the fact that exercise is important. Personally, I welcome that, because no amount of info in that regard can be too much. So yes, tell me about some new doctor you heard of, who is using cactus plants to stimulate your chi and align your chakras to get rid of inflammation (hey....it could be a thing! Lol). That's helpful, because I may not have heard about it and it might be something useful to check out.
Although I still get emotional about it at times, I'm trying a new method to respond to inconsiderate comments. Without saying too much, I let them know that this is not something I can easily control. I would prefer not to be reminded that this is a difficult time for me. Please feel free to share anything that you have been told or asked that gets you down and how you deal with it. Sick or not, we've all been there. You are not alone.
Blessings...
Thursday, 31 October 2013
Friday, 11 October 2013
Let's Get Physical!
It's been a while...I know. Between getting back into the groove of work (which is going pretty well so far), not feeling like I had very much to say and allowing a negative comment to get to me waaaaay more than I thought I had - let's just say it has taken a while to get inspired. And that's ok. Life is like that sometimes. However, a friend of mine reminded me this morning that October is lupus awareness month! I didn't realise it, because there's also lupus awareness in May. The way I see it though, any month is the best month to raise awareness. So here we go!
One of the things I have been trying to get back into is exercise. I had enrolled in the local gym early in the year, because I'm the type of person who has to pay for something in order to keep up with it. I take the money I spend on things very seriously. I was doing pretty well until just before summer (when I started feeling worse and worse) and just could not find the energy to leave home in the mornings. And even if I did go, I couldn't keep up with the exercises. I ended up feeling worse afterwards. I think one of the main problems was that I was pushing myself too much. With lupus, you have to pace yourself and not demand too much at one time, because joint issues are one of the main complaints.
Joint pain (arthralgia) and inflammation (arthritis) can make even the simplest tasks incredibly difficult. I remember a time when I was going through a rough patch (I think it was late 2007) and every morning I would wake up to swollen fingers, elbows, knees and ankles - any part with joints I needed to bend with ease. I still had all my hair at the time and it was very hard to style it properly; getting on clothes was a task; and just walking took an age. I seriously felt like I had become an old lady overnight! At first, these feelings would subside as the day progressed, however, over the next few months, it became an all day thing. I was no longer able to dance (one of my passions) and playing the piano and cello became increasingly difficult. Luckily, everyone was very patient with me. My family helped me at home as much as they could; I can still see my boyfriend at the time (now husband :-D) pulling me up off the couch after we watched tv because it was that difficult just to get up and helping me to move around wherever we went; and the school I worked at allowed me to change my schedule so that I would be working at a time that suited how I was feeling. Eventually, I was put on prednisone, a common corticosteroid used to fight inflammation. I think I have mentioned before that this drug can have serious long-term effects to bones and joints, but boy do they help you feel normal again! They took the inflammation right down and I was able to move around as freely as ever. So...back to exercise!
I have read that if there is inflammation in the joints, it is important to be careful when exercising. Activities such as tennis, bowling, golf, weight lifting, or rowing can be very harmful to inflamed joints. They tend to put too much stress on one single joint. Good exercises are isometric exercises (posing for a long as you can in a particular position), stretching and Pilates. These strengthen the muscles without moving the joints too much. Also, walking, swimming and bicycling are good to get into. Of course, those are typically outdoor activities so remember the need to stay out of the sun. Good thing treadmills and stationary bicycles were invented!
The less expensive route is, of course, is to workout at home. I have found that when getting into certain "fad" exercises (you know the ones that tell you to do specific things and each day the number increases?), I can't keep up. I give in within five days and feel like a failure. I need balance. Of late, I have started to put together my own little routine for the days I don't go to the gym. One thing that has really helped is that I have been using a pilates ball to help me to do things like planks and crunches. Over the years I've wondered, "why am I so terrible at planks, pushups and crunches?" I just can't seem to push myself to complete a desired set. For the planks and pushups, I have realised that I have very weak elbows, made worse by the fact that they cannot straighten (something all my dance teachers cuss me about - "Straighten your arms, Emily!' - I can't help it though!). I'm told I have arthritis in them. So I now use the ball to cushion my elbows while planking. For pushups, I stay on my knees to reduce the pressure on my elbows, but lean forward to make it a little harder and feel more of a burn. For crunches, I rest my back on the ball. It has nothing to do with my elbows, but it's just way more fun, waaaay easier and I still feel the results ;-). YouTube has been a great friend too - different videos give ideas for whatever part of the body you want to work. I've been switching it up every week...tryna make it fun and interesting. I also found a good, manageable 'before shower' set of exercises: 50 jumping jacks, 30 second plank, 30 high knees and 20 crunches. Early on in my diagnosis, my mother had bought a rebounder. This is supposed to be an excellent way to both exercise and it has other great health benefits. It has been hard to keep up with it, but I need to get back on that...literally! Of course, this all has to go hand in hand with good nutrition. Water is clearly an essential part of every day and some of the top foods to fight joint inflammation include: salmon, almonds, papaya, apples, black beans, kale, broccoli, turmeric and ginger.
So that's my two cents on exercise. Remember...pace yourself and do what you can manage, but try to do something every day. Once in a while, find a fitness/dance class to go to. As much as you're being told what to do, listen to your body and don't stress out your joints too much. Happy workouts!
One of the things I have been trying to get back into is exercise. I had enrolled in the local gym early in the year, because I'm the type of person who has to pay for something in order to keep up with it. I take the money I spend on things very seriously. I was doing pretty well until just before summer (when I started feeling worse and worse) and just could not find the energy to leave home in the mornings. And even if I did go, I couldn't keep up with the exercises. I ended up feeling worse afterwards. I think one of the main problems was that I was pushing myself too much. With lupus, you have to pace yourself and not demand too much at one time, because joint issues are one of the main complaints.
Joint pain (arthralgia) and inflammation (arthritis) can make even the simplest tasks incredibly difficult. I remember a time when I was going through a rough patch (I think it was late 2007) and every morning I would wake up to swollen fingers, elbows, knees and ankles - any part with joints I needed to bend with ease. I still had all my hair at the time and it was very hard to style it properly; getting on clothes was a task; and just walking took an age. I seriously felt like I had become an old lady overnight! At first, these feelings would subside as the day progressed, however, over the next few months, it became an all day thing. I was no longer able to dance (one of my passions) and playing the piano and cello became increasingly difficult. Luckily, everyone was very patient with me. My family helped me at home as much as they could; I can still see my boyfriend at the time (now husband :-D) pulling me up off the couch after we watched tv because it was that difficult just to get up and helping me to move around wherever we went; and the school I worked at allowed me to change my schedule so that I would be working at a time that suited how I was feeling. Eventually, I was put on prednisone, a common corticosteroid used to fight inflammation. I think I have mentioned before that this drug can have serious long-term effects to bones and joints, but boy do they help you feel normal again! They took the inflammation right down and I was able to move around as freely as ever. So...back to exercise!
I have read that if there is inflammation in the joints, it is important to be careful when exercising. Activities such as tennis, bowling, golf, weight lifting, or rowing can be very harmful to inflamed joints. They tend to put too much stress on one single joint. Good exercises are isometric exercises (posing for a long as you can in a particular position), stretching and Pilates. These strengthen the muscles without moving the joints too much. Also, walking, swimming and bicycling are good to get into. Of course, those are typically outdoor activities so remember the need to stay out of the sun. Good thing treadmills and stationary bicycles were invented!
The less expensive route is, of course, is to workout at home. I have found that when getting into certain "fad" exercises (you know the ones that tell you to do specific things and each day the number increases?), I can't keep up. I give in within five days and feel like a failure. I need balance. Of late, I have started to put together my own little routine for the days I don't go to the gym. One thing that has really helped is that I have been using a pilates ball to help me to do things like planks and crunches. Over the years I've wondered, "why am I so terrible at planks, pushups and crunches?" I just can't seem to push myself to complete a desired set. For the planks and pushups, I have realised that I have very weak elbows, made worse by the fact that they cannot straighten (something all my dance teachers cuss me about - "Straighten your arms, Emily!' - I can't help it though!). I'm told I have arthritis in them. So I now use the ball to cushion my elbows while planking. For pushups, I stay on my knees to reduce the pressure on my elbows, but lean forward to make it a little harder and feel more of a burn. For crunches, I rest my back on the ball. It has nothing to do with my elbows, but it's just way more fun, waaaay easier and I still feel the results ;-). YouTube has been a great friend too - different videos give ideas for whatever part of the body you want to work. I've been switching it up every week...tryna make it fun and interesting. I also found a good, manageable 'before shower' set of exercises: 50 jumping jacks, 30 second plank, 30 high knees and 20 crunches. Early on in my diagnosis, my mother had bought a rebounder. This is supposed to be an excellent way to both exercise and it has other great health benefits. It has been hard to keep up with it, but I need to get back on that...literally! Of course, this all has to go hand in hand with good nutrition. Water is clearly an essential part of every day and some of the top foods to fight joint inflammation include: salmon, almonds, papaya, apples, black beans, kale, broccoli, turmeric and ginger.
So that's my two cents on exercise. Remember...pace yourself and do what you can manage, but try to do something every day. Once in a while, find a fitness/dance class to go to. As much as you're being told what to do, listen to your body and don't stress out your joints too much. Happy workouts!
Thursday, 5 September 2013
Summer in Review
It's back to school time and I am honestly excited!! This has been my most productive summer to date, which is ironic because I did absolutely nothing! I must say I now fully believe (because I kinda knew all along) that the key to good health is rest. I have been able to sleep when I needed to sleep; make most meals so I know exactly what's going into them (and soooo loving the kitchen now); and I have stayed out of the sun for the majority of the time. Of course, this can't go on forever (gotta make that paper!), but I feel so blessed to have been able to take some time off without worrying too much about my pocket.
So, what now? I'm going back to work. Do I revert to all my old habits of over-scheduling things and running myself ragged? Of course not! It's time now to make sure that my schedule includes days off, spaces between classes, rest time, cooking/juicing time...in a word (or two), healing time. Luckily, with my profession (teaching music), that is possible. I am able to schedule my work around times that suit me and that is such an important thing when dealing with this condition. In my utopian view, everyone should be able to work at their optimum time of productivity, but of course I have to be realistic and know that it's not always possible. At the end of the day though, I have to do what's right for me. Even if it means making a little less money and living a little more simply.
Before the summer break, I was miserable! I could feel myself becoming irritated by every sound. That's kind of a concern when you're a music teacher. I was getting physically ill - chills running up and down my body and my teeth paining whenever my students rubbed their hands on the carpet or touched their music bag or handed me their books. I was no longer able to be in the same room with the playing of a violin. I just couldn't wait for each day to finish so I could go home and sleep. This was despite making sure that I took all my medication as prescribed; something I've been bad at in the past. The day after my final day of work, I had a doctor's appointment. I told her everything I was feeling. She saw where my hair loss had increased- I had three large bald patches; something I have gotten used to over the years, but is still a concern. I'm going segue here a bit...
My hair story has been a strengthening experience. Lupus is the reason I cut my hair in the first place. I had sisterlocks that reached the upper part of my back, but little by little, the locks continuously fell out. The thing is I had so much hair, it was easy to cover up. After a while though, it was just an awful feeling of unevenness and not knowing when two or three or more would fall out, so I cut it all off in December 2008. I can still see the faces of the ladies at my hairdresser who knew me from prep school days and had always admired my hair; they were in shock, sitting there with their mouths open as I committed this sacrilegious act! I refused to look in the mirror while it was being done, because I had no idea what I would look like and if I would like it. I knew, however that whatever it was, I would feel better without it than not knowing when it would decide to forsake me on a daily basis. When Sharon (my hairdresser) finished and I looked in the mirror, I loved it! I felt so relieved!! I didn't care that I was the only one in the room rejoicing. It was such a freeing feeling and I had no regrets. Since then, I have continued to experience hair loss from time to time, but it's nowhere near as distressing as the first time. I've never been emotionally attached to my hair or being able to style it in a million different ways and I'm usually fine with whatever simple, presentable style it can produce on any given day. Whenever I start losing my hair though, I cut it so that there's less pulling with brushes and combs and (mainly) so I stop freaking out in the shower when there's hair everywhere! By the way, props to Sharon. She has been with me throughout this entire journey and has ALWAYS found a way to make me feel confident, despite my hair issues.
So, right...back to the doctor. I'm there and she's all, your blood work is showing improvement, but there's obviously still a lot of inflammation. It's also a double whammy because some of the medications can cause the hair loss and other issues I had been having. She then called in my dermatologist (who happened to be in the building) and she told me I would need steroid injections in my scalp. That fact didn't settle in until two days later and I thought, "I seriously agreed to get injections in ma head top?" After two days of rest - staying inside, sleeping when I needed to, light exercise - I reluctantly attended my appointment with the dermatologist. She took one look at my scalp and decided I no longer needed the injections as the inflammation had obviously gone right down. Yay!! After only two days, that was such encouraging news! So, I took it as an indication that I was on the right track. She gave me a few topical medications and since then, my hair has been growing back in most places. The thing with hairloss (or alopecia) as a result of lupus is that if the damage is not controlled, the hair follicles can die and if so, the hair is unlikely to grow back. That is the case for parts of my scalp. It's funny because now everyone thinks I'm trying to grow a mohawk, but what's happening is the middle panel of my scalp is very healthy and thick, but the sides are either bare or thin. It's just how my hair has decided to grow (and not grow)! I'm thinking I may need to give in and embrace it ;-).
All in all, I have had a great time of healing, growth, patience, tolerance for the kitchen, rest, and above all, peace. I am happier and feeling more creative. I have learnt more about this illness than ever before and about the natural treatments that I can incorporate into my everyday life. My next step is to work towards being medication-free. We all know from ads on tv that the side effects of most drugs tend to far outweigh the symptoms of the illness itself and the long term repercussions can be quite serious. I made the decision that I would give my doctor's plan a fair chance by taking my medication as prescribed so that with good results in the horizon, they would be reduced or eliminated and I can hopefully stay healed with the whole healthy lifestyle thing. My next appointment is in October near my next birthday (29 years old...yikes!), so that's my goal date to see drastic improvement. In the meantime, as much raw food as possible, a schedule with free days, exercise, not getting stressed out on the road (that's hard in JA), limited sun exposure, and generally a calmer, more peaceful approach to everything.
I want to close by saying thank you for reading. It doesn't matter that I don't know who you are or what you think about my blogging. Just knowing that anyone has taken the time to read these words has given me a lot of drive in this process. I find myself wanting to do the things I say I will do even more now because I have put it in writing and put it out there for virtually anyone to see. As much as I am taking control of my health for myself, your participation in the process just by reading has helped me to hold myself accountable for all my goals. Thank you again and again.
Blessings.
So, what now? I'm going back to work. Do I revert to all my old habits of over-scheduling things and running myself ragged? Of course not! It's time now to make sure that my schedule includes days off, spaces between classes, rest time, cooking/juicing time...in a word (or two), healing time. Luckily, with my profession (teaching music), that is possible. I am able to schedule my work around times that suit me and that is such an important thing when dealing with this condition. In my utopian view, everyone should be able to work at their optimum time of productivity, but of course I have to be realistic and know that it's not always possible. At the end of the day though, I have to do what's right for me. Even if it means making a little less money and living a little more simply.
Before the summer break, I was miserable! I could feel myself becoming irritated by every sound. That's kind of a concern when you're a music teacher. I was getting physically ill - chills running up and down my body and my teeth paining whenever my students rubbed their hands on the carpet or touched their music bag or handed me their books. I was no longer able to be in the same room with the playing of a violin. I just couldn't wait for each day to finish so I could go home and sleep. This was despite making sure that I took all my medication as prescribed; something I've been bad at in the past. The day after my final day of work, I had a doctor's appointment. I told her everything I was feeling. She saw where my hair loss had increased- I had three large bald patches; something I have gotten used to over the years, but is still a concern. I'm going segue here a bit...
My hair story has been a strengthening experience. Lupus is the reason I cut my hair in the first place. I had sisterlocks that reached the upper part of my back, but little by little, the locks continuously fell out. The thing is I had so much hair, it was easy to cover up. After a while though, it was just an awful feeling of unevenness and not knowing when two or three or more would fall out, so I cut it all off in December 2008. I can still see the faces of the ladies at my hairdresser who knew me from prep school days and had always admired my hair; they were in shock, sitting there with their mouths open as I committed this sacrilegious act! I refused to look in the mirror while it was being done, because I had no idea what I would look like and if I would like it. I knew, however that whatever it was, I would feel better without it than not knowing when it would decide to forsake me on a daily basis. When Sharon (my hairdresser) finished and I looked in the mirror, I loved it! I felt so relieved!! I didn't care that I was the only one in the room rejoicing. It was such a freeing feeling and I had no regrets. Since then, I have continued to experience hair loss from time to time, but it's nowhere near as distressing as the first time. I've never been emotionally attached to my hair or being able to style it in a million different ways and I'm usually fine with whatever simple, presentable style it can produce on any given day. Whenever I start losing my hair though, I cut it so that there's less pulling with brushes and combs and (mainly) so I stop freaking out in the shower when there's hair everywhere! By the way, props to Sharon. She has been with me throughout this entire journey and has ALWAYS found a way to make me feel confident, despite my hair issues.
So, right...back to the doctor. I'm there and she's all, your blood work is showing improvement, but there's obviously still a lot of inflammation. It's also a double whammy because some of the medications can cause the hair loss and other issues I had been having. She then called in my dermatologist (who happened to be in the building) and she told me I would need steroid injections in my scalp. That fact didn't settle in until two days later and I thought, "I seriously agreed to get injections in ma head top?" After two days of rest - staying inside, sleeping when I needed to, light exercise - I reluctantly attended my appointment with the dermatologist. She took one look at my scalp and decided I no longer needed the injections as the inflammation had obviously gone right down. Yay!! After only two days, that was such encouraging news! So, I took it as an indication that I was on the right track. She gave me a few topical medications and since then, my hair has been growing back in most places. The thing with hairloss (or alopecia) as a result of lupus is that if the damage is not controlled, the hair follicles can die and if so, the hair is unlikely to grow back. That is the case for parts of my scalp. It's funny because now everyone thinks I'm trying to grow a mohawk, but what's happening is the middle panel of my scalp is very healthy and thick, but the sides are either bare or thin. It's just how my hair has decided to grow (and not grow)! I'm thinking I may need to give in and embrace it ;-).
All in all, I have had a great time of healing, growth, patience, tolerance for the kitchen, rest, and above all, peace. I am happier and feeling more creative. I have learnt more about this illness than ever before and about the natural treatments that I can incorporate into my everyday life. My next step is to work towards being medication-free. We all know from ads on tv that the side effects of most drugs tend to far outweigh the symptoms of the illness itself and the long term repercussions can be quite serious. I made the decision that I would give my doctor's plan a fair chance by taking my medication as prescribed so that with good results in the horizon, they would be reduced or eliminated and I can hopefully stay healed with the whole healthy lifestyle thing. My next appointment is in October near my next birthday (29 years old...yikes!), so that's my goal date to see drastic improvement. In the meantime, as much raw food as possible, a schedule with free days, exercise, not getting stressed out on the road (that's hard in JA), limited sun exposure, and generally a calmer, more peaceful approach to everything.
I want to close by saying thank you for reading. It doesn't matter that I don't know who you are or what you think about my blogging. Just knowing that anyone has taken the time to read these words has given me a lot of drive in this process. I find myself wanting to do the things I say I will do even more now because I have put it in writing and put it out there for virtually anyone to see. As much as I am taking control of my health for myself, your participation in the process just by reading has helped me to hold myself accountable for all my goals. Thank you again and again.
Blessings.
Friday, 23 August 2013
Chew your juice :-P
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!!
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!!
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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