Body Conscious

Let me start with the good news. I'm still alive and well enough to go about my daily tasks. I have energy most days and I continue to enjoy life. The bad news: This lupus thing is really not an easy road. Every time you think you understand it a little better, something else comes out of the blue to confuse and throw you off, even if just slightly.

I was diagnosed with Lupus ten years ago, an autoimmune disease where the immune system sees its own healthy tissues and cells as foreign and attacks them in an effort to "save" the body, but instead wreaks further havoc. It means that anytime you get sick or introduce things that the body is not sure about, it can develop into a flare affecting various organs of the body. It means that allergic reactions can increase and come and go as they please. Like how sometimes I can wax off three slices of pizza, no biggie. The next time I try, I break out in a rash after eating just one. It is important, as with any chronic condition, to find what works or doesn't work for you and maintain a healthy lifestyle with certain dietary improvements, lots of rest and adequate exercise. It also helps to have a positive attitude because it can get real!

My "realness" has manifested in my skin for the most part (thankfully but also annoyingly). With severe hair loss over the years; scalp, facial and upper body scars; rashes that come and go as they please; and consistently sore ears - it is clear that lupus is still a very active part of my life. While I've never been hospitalized, I've also never been in remission and off medication and I still feel the effects of this unpredictable disease. And it has changed me in more ways than I ever imagined.

It has made me think a lot about image and concepts of beauty that our society has placed upon us. I was never an "all about looks" kind of girl, ensuring that from head to toenail I was "on fleek." I enjoyed having low maintenance hairstyles (locks at first then very low hair), not wearing much makeup and definitely not fussing over a couple skin blemishes. However, nothing could have prepared me for what lupus would eventually cause. First came the acceptance of less and less hair until I reached almost 100% baldness. Then, even worse, came the very visible scars on my face, neck and shoulders. I chose to be officially bald and wear my baldness with pride in late 2014 and that part of my journey was empowering. But, it had not eradicated the distress that can come with such a drastic change in one's image. Earlier this year was particularly rough for me because I decided to allow my hair to grow just to see if anything had changed; if, by chance, my follicles were again healthy and ready to do what follicles do best. After months of patiently waiting, it became obvious that it was not meant to be. And anyone who knows me knows I hate wearing wigs and scarves on my head, so it was months of that discomfort before I decided to go bald again. To be honest, I felt much better after shaving the little that was trying to grow, because it was far more difficult for me to watch and wait for something that was obviously not going to happen than accept what I had already grown accustomed to. It also helps to hear that I wear it well ;-)

But...and there's always a but...my skin. My skin is my greatest disappointment, even for someone who was able to accept the changes her body has been going through. The face people see on a daily basis is not the face I wake up to. And while it doesn't take too much to get myself looking "acceptable," the evidence of illness stares me in the face a little too regularly. That constant reminder - you are not well and your face shows it.

They always say "whatever doesn't kill you, makes you stronger." And I think it's true. I have gained a kind of strength through this journey that I hadn't thought imaginable. And I'm often told how strong I am and what an inspiration I am because of what I've been going through. But in all honesty, I was not feeling strong or inspiring earlier this year. I think I got into a prolonged low period and I started feeling like a fraud. I continued to smile through how I truly felt so that no one would give me the pitiful "poor soul" look. And I think that was one of my biggest mistakes throughout this process. While trying to be that strong person, I was not acknowledging my weakness. Not allowing myself to be upset about how things have turned out. Not accepting that I'm still human and I'm allowed to feel disappointed and upset and that all odds are against me. Not allowing myself to say that lupus sucks and that sometimes I hate who I see in the mirror. That for once, I just want to feel what it's like to get up, get dressed and go on my way - no makeup, no insta-brows, no extra sunblock, no long sleeves, no remembering where I left my umbrella last. Just to be normal. 

Photo Credit: Tori Haber Photography

It has been in accepting these weaknesses, these true thoughts -  the un-inspirational not at all strong side of me - that has brought out true strength. To acknowledge them, recognize that I cannot wallow in them, identify and give thanks for the blessings I do have and get on with my day with an extra bounce in my step. 

And I am truly happy. I really am. I would still love to have clear skin (I mean, who doesn't?) and I'm trying all kinds of things to achieve that. But for now, I have accepted that this truth of mine is something I have to deal with while still achieving my life dreams - none of which have to do with having clear skin! And while it can still be painful to be reminded of this condition when I look in the mirror daily and shave my head; rubbing various concoctions on my skin; and carefully applying layers of makeup to my face, I will be approaching my 32nd birthday (October baby! Whoop!) with joy to still be living this beautiful life.

October is supposed to be Lupus Awareness Month. This month, Ocean Boulevard - a company providing accessories (ties, tie pins, lapel pins, pocket squares, socks, etc.) and encouraging all to "Elevate the Status Quo" - has generously dedicated to contributing to lupus awareness in Jamaica using proceeds from the sale of one of their purple style cubes (purple is the official colour for lupus). Thank you Ocean Boulevard! It's a great reminder that even if your image is tainted in some way, shape or form, your accessories (or those of the one whose arm you're on ;-)) can be that sure confidence booster. I can say I'm one lucky girl to have someone who accepts me and calls me beautiful, scars and all. And when we're ready, we clean up real nice! ;-)

Lapel pin provided by: Ocean Boulevard

It's been purple this and purple that...now what?!?!

It is the final day of May and Lupus Awareness Month is almost at it's official end. So what next? Well, lupus still exists, so as far as I'm concerned, the awareness will not end here. However, you might be feeling as if nothing was really done this month. I would disagree. It has been a very productive month. After all the fun purple nails and finding anything purple to wear, making the "L" sign and taking pics, wearing purple ribbons, sharing facts online - a very necessary conversation has started and will continue. I keep saying it - The support has been AMAZING! Some of the things I've heard people say show how much more educated they are about the disease. They are more willing to share their own stories of triumph and hope and sometimes distress, whether lupus related or not; knowing they or their loved ones are not alone in this fight. More people want to get involved in sharing information, offering interviews, support through benefits, making donations, etc. The activities were not as large-scale as hoped, but, guess what? There's always October! This is when Jamaica, and more specifically the Lupus Foundation of Jamaica, recognizes lupus awareness. So, we can treat May as the warm-up for October. Now that we have more supporters on board (that means you ;-)) we will be well equipped for further awareness later on in the year and to do some serious fundraising. Our goal is to meet some important needs:

We need money
Like any other chronic disease, lupus can be very expensive. From the doctor's visits, to the blood tests, to the medications, hospital trips, to simply getting to the doctor for some; it can really be overwhelming. Not to mention the fact that the disease leaves some so debilitated that they are unable to work. Some have families to care for and this added stress can make the lupus worse. We need to have a good fund going so patients who need that extra dollar can benefit. When we have healthy people, we have a more productive society, so this benefits us all. It would, of course, need proper regulation so that no one abuses the opportunity, but I feel it's a very necessary step. We also need money to help support lupus research. I have not heard of one drug on the market that is specific to lupus. Of the medications I have taken, one is a steroid, one is an antimalarial, one is for ensuring your body doesn't reject a new organ and one was a cancer medication. WTH? I have never had malaria. I have never had an organ transplant. I don't have cancer. Because the disease is so complex and attacks so many different systems in the body, there really is no one thing that helps. Good diet, healthy practices and proper management of stress is key, of course, but in some instances, that is not enough and research needs to continue in order to change that. On that note, however, we need the lupus population to be better educated about their disease and how a healthy lifestyle can significantly help. As much as information is at our fingertips these days, some are still not aware of the benefit of natural practices to maintain good health on a daily basis.

We need insurance/NHF support
Earlier this year, a lupus patient started a petition on Change.org with the title "National Health Fund Jamaica: Please add ‎Systemic Lupus Erythematosus to the List of Covered Conditions under the National Health Fund in Jamaica." So many of you signed that petition and we are eternally grateful. The jury is still out on that one I suppose, but I am hoping something comes of it soon. As it relates to insurance, it seems that because there is a lack of understanding of the disease, no one wants to insure us. Not even in policies where you actually start a savings account towards your health and then get the extra benefits, are we eligible for. I must say that my research in this regard is limited, mainly because it is distressing to be constantly turned down for insurance. So, I'm not going to pretend that I've tried everything possible, but I'm not the only one who is having a hard time with this. Lupus does not have to be a death sentence. I have never been hospitalised as a result of the disease and I still get turned down. To us, it feels like lupus is not "popular" enough to be considered worthy of extra help. It doesn't seem fair. 

We need a more all-round approach to our treatment
From my other posts, you should know I'm an advocate for natural health treatments. They have proved worthy time and time again for so many people and, at the end of the day, it can't possibly hurt for us to attempt a healthy lifestyle. Now I'm not saying we should all jump on the bandwagons that have been rolling through the internet, whether it is all raw, gluten-free, eat right for your type, acupuncture, only eat upside-down wearing a hat on your feet! You find what works for you. However, it would be awesome if we could find more ways to marry western medicine to alternative treatments. Medication has its place in many instances - there's no denying that. But it is discouraging at times to encounter doctors who are not willing to look into natural practices or simply proper nutrition, in an effort to understand some of the other things patients are trying out. Maybe there is more to it than I know in terms of how they can compromise their own practice if they are not experts in alternative fields. However, brushing off other methods as potentially ineffective is a close-minded way of guiding us. In a perfect world, all healthcare workers - western and alternative doctors alike would come together so we can optimize good healthcare. With the complexity of illnesses these days, an all-round approach is key, in my opinion.

We need a more compassion
I spoke with some other patients about how others around us can help us cope.

More understanding in our work environments:

• reexamining healthcare policies regarding sick days and disability policies
• there seems to be more compassion towards illnesses that are better understood; once it is not understood, we are simply making excuses
• the stigma that we won't be able to function in the workplace as a result of the illness needs to go - far too often there's a denial of employment or judgment when we are already employed
• exploring more flexible work times if possible or a work-from-home situation when necessary

Family members and friends have a part to play too:

• become aware; do more research regarding our symptoms, limitations and concerns in an effort to help us ease the pain we may endure
• simply be there, listen and offer comfort when possible 
• become involved in our attempts to spread awareness; your small part could help make a huge difference
• instead of pointing out problems we are already aware of, find ways to assist when possible, such as "Do you have dinner tonight?", "Do you need help with the kids today?" or simply "How can I help?"

Things we would love you to stop saying:

• "I know someone who died from lupus."
• "You are just being a hypochondriac/exaggerating."
• "You need to cut back on your stress"/ "You need to rest more"
• "Stop claiming lupus"
• "I know people with worse things"
• "What stage lupus do you have?"

These are just a few of the aggravating things we hear daily. For some, we know it is coming from a good place and it is sometimes hard to understand why it might not be a welcome statement. However, if it is not helping, let's try to curtail it. Even I have to watch what I say sometimes. My way of dealing with my condition may not be the same as another and I must respect that and find other ways to assist.

So as we say goodbye to May 2015, I am by no means saying goodbye. There is so much to be done and I am uber excited about what will be happening. And this is not just about lupus, or any one person who has lupus. This is far bigger than any individual story, whether of sorrow or of triumph. This is about us coming together as a society in the name of good health. Going back to basics and trying to reconnect with our bodies, minds, and spirits. This involves us learning about one and another and encouraging compassion and understanding. We are all in this world together. Let's make the most of it.





This is just a small percentage of the support shown. Awareness came in all shapes, sizes and ages... Take a look:

                  

                                        

Catching Up

I couldn't believe my eyes when I looked at the last post I made on this blog! Was it really in 2013? Anyway...I shan't despair. As they say, "Weh nuh dead, nuh dash weh!" (For my foreigners, "that which is not deceased should not be thrown away)...and I am certainly alive and kicking!!

So...what's been happening since I last posted? To be honest, as it relates to lupus, there have been no dramatic improvements with my condition. My medication has remained the same although this is not where I saw myself since I started posting. I'm not going to say that nothing natural I have tried is working, because I have not been as consistent with these treatments as I should be.

Last June, I had a medical issue (more on that at another time), and this caused a flare in my symptoms. We use the term "flare" to describe a time when symptoms start rearing their ugly heads and the disease becomes active or more active than before. This was a pretty bad flare and, as a result, I experienced major scarring on my face in the form of a butterfly, also known as a butterfly or malar rash. The scarring extended to my scalp, cheeks, ears, neck, chest and shoulders as well as causing dark marks and scaly skin in those areas. My skin is quite a site! I was also suffering from fatigue and dizziness. And my hair? In previous blogs, I've spoken about my hair issues. Well, this flare took the cake! I think it really really wanted to know how much I could handle. My hair fell out so much that in about June, I started wearing scarves to cover it up. Then I tried extensions for the first time in my life. The extensions led to further breakage and patches, so I went back to the scarves and eventually wore wigs from time to time. I also lost half of each eyebrow.

                                             The damage was the worst I'd ever had...

 













Had to cover that mess up with scarves and hats...

                                                             
And eventually...wigs...

                                                                


After weeks upon weeks of thinking about it and researching and meditating and praying on it, I decided to shave what was left of my hair off and officially be a bald woman. I was tired of hot scarves and wigs, causing me headaches and discomfort. I was tired of trying to coordinate scarves with outfits and styling the wigs once they started to become worn out. And most of all, when I wasn't wearing anything on my head, I was tired of looking in the mirror and seeing a circus clown staring back at me. I was on the verge of allowing this thing to drag me down to my lowest level and I had to stop it. I figured, I'm confined to covering up anyway. If I don't like being bald, I'll just continue covering it up.

Four days before my 30th birthday in mid October, I sat in my bathroom and my husband, Julian, clipped, sheared and shaved off every last strand of hair. I was somewhat freaked out during the process, because it felt so surreal. Afterwards, I got emotional about it because it was such a huge change and it was scary being reminded that things had gotten this serious. Eventually, with some extra love and support from loved ones, I embraced it. I started to feel free! I felt like an improved woman (no matter what the whole deal is with the importance of hair) and I confidently took my place as a certified baldy. I had scarring on my scalp so I quickly figured out how to use makeup and cover it up to try and "pretty up miself." The scars still show, but I find myself being less and less concerned with them and more concerned with being confident about my baldness.

The results...                                                                                 Can't believe I did it!

                                           
                                                               

Embracing it...

                                                                   
                                                           
The love and support has been OVERWHELMING to say the least. So many times I get, "You are rocking that look!" or "Wow! You have such a cute head!" To all the haters during my younger school days who made fun of my big forehead, I say, "Tek dat!" Some of my little students have said things like, "Auntie, I love your bald head." One of them (after staring at me for a long time) said "You're soooo pretty!" That really made my heart melt. I get all kinds of comments. Not always good, but that's ok. I'm learning how to deal with people and if I feel it necessary, to educate them about my condition. I cancel the pity party once I hear it being set up and put things into perspective. My main declaration is I AM ALIVE AND FEELING GREAT!! and that's more than so many with this disease can say. Why should I go around feeling sorry for myself? I owe it to them, myself, my family and to God to do the best I can with the life I have, giving thanks every lively step along the way. I try to encourage everyone to truly believe they are enough to achieve their goals and make a contribution to this world, no matter what they look like. Baldness, scars and all.

Still, I must be mindful of my health. My issue right now is consistency. I'll be relatively stress-free for a time, then I get off track and take on too many responsibilities and my body definitely feels it. I'll be good with supplements and skin care products then they run out and I don't restock so I can't know if they're helping me or not because I don't give them enough time. I'll eat really well for a while (I went an entire month without meat, flour, dairy and sugar! Except on Julian's birthday and that time I stole a piece of curry goat an it bun out mi daylight - serve mi right - and a couple wraps and biscuits here and there ;-)), but then when I get busy, I go back to not so great eating habits. I also end up being more irritable and moody than is necessary and that doesn't help anything. I have recently started an exercise programme guided by a friend online and it is the most I've kept up with one of those things. I have fallen off in the last week or so due to being busy, but I am rearing to get back on track with it when I re-coop a little more. So, there is definitely work to be done, but I cannot say enough how grateful I am for all the positive energy I have been receiving and I'm just soaking it right up!! It has really helped me to stay encouraged when I do get low at times about my appearance (because that still happens, of course) and focused on trying to be a better person, both for good health and personal development.

How can you play a role? I'm so glad you asked :-) Lupus Awareness Month is in May and World Lupus Awareness day is May 10! A group of us who have come together via whattsapp in a support group created by a young and vivacious lupus patient, are planning to rev things up this year and really increase awareness. We can't do it without your support, however. Remember that whole stress-free thing we're supposed to try to be? It's not always easy to accomplish. But collaborating with us or participating in online "events" or even just educating yourself about the disease can be a major contribution. So please keep your eyes peeled for our posts and activities and get involved!

Take care of yourselves and each other. Love and blessings...

What Not To Say

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...

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! 

     

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.

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!!