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...