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...