My life is such a paradox. This time last year I was suffocating by just existing. I could just not see how things could improve. I was unsure of myself, my relationships, my finances and my career abilities. When I was signed as incomplete in my teaching prac this February, I felt sure at each that the small recoveries I had made would just swallow me up. But I look now at where I am and l know I am blessed. The opportunities that have come my way are serendipitous to some extent, but mostly it is the time and effort I put in. The suffering and hard times caused me to dig my own path, find my special way in this world. I am not planning on doing what I wanted, I am going to do what I was put here to do, and that is so much better. The pain and challenges l faced have given me the flexibility to ensure this happens and that I accept the changes as they come. Lupus doesn't 'toughen you up', if anything, it softens you. And it is this softness that allows you to bend to the winds of change, and be open to new situations.
It is for this reason that I say I am thankful for my Lupus.
New blog post: I just posted a rambling about my issues dealing with #lupuscerebritis , #seizures and trying to work my shit out with the DMV in order to get my drivers license back. No biggie (well, kinda...)
Them seizure days. I won't drive after even the smallest of seizures. And on a day like today, with the weather hitting with severe storm winds and rain, and a freeway southbound commute from the city center, I'd be crazy to think about it. The seizure was small, I was present for the full 2 1/2 minutes of it. My left side numbness went within 30 minutes and I had most of my coordination back in 2 hours. But the giddiness traded itself in for a period of glumness which, I know, will become a migraine by dinnertime. I'm soaked and sulky, but forever grateful I have parents who can help me in times like this.
I have been speaking to many people recently about how unfair it is that there has been no cure found to 'fix' Lupus. Yes I agree, this sucks, but I also tend to question the thinking. Can Lupus be 'fixed'? Can any chronic illness be fixed? What does it mean to fix something in the body which is as widespread as Lupus? It is not as simple as wiping out your immune system (God knows I've tried that a few times!) Nor is it a case of removing the 'culprit organ'. So, if we were to fix it, what would it look like? And why are we so adamant to get this quick fix anyway? What, in our society has led us to the presumption and demand for healing the body with a basic dose of a particular pharmaceutical product?
The last few weeks have been focused on how my Lupus troubles have involved my parents directly. It took a lot of strength from them, I am sure and I can only thank them. You may have noticed, from the information I have trickled into the last 8 months of posts but some pretty big changes are happening in my life at the moment. It has left me scatterbrained and feeling quite insecure. But I would like to share with you the first crossroad I am coming up to. Incredibly it is not so much a crossroad as it is a three-way-intersection. I have some big choices to make and the first of those to bring more clarity to my intentions and communications with y'all.
Have a read now and see how it grabs you. If you decide to follow through, as the end of the text suggests, please feel free to share your actions, thoughts, ideas with me!! Let's get it started in here! http://www.thislupuslife.com/my-lupus-in-my-twenties/
Strong woman have begun some of the most incredible scientific and mathematic inquiries of history. Rachel Carson, one such woman was the foundational drive behind the largest environmental protection movement still promoted today, the Environmental Protection Agency (EPA). She was fundamental in the push for the ban of DDT usage.
Lupus is an horrific illness, prominent in some (arguably minority) communities of the world: women, Asians, Africans and African Americans. We need to advocate, support and promote this disease for the improvement of treatment and funding of research. Just as Rachel Carson, we need to overcome the barriers and impress the importance of treatment and a cure. All of our minorities together make a majority and make us strong. Life is beautiful. Science is amazing. Lupus is beatable.
The attached piece was written by Noli, my mother and one of my parent-carers. These are her thoughts on the Journey through this Lupus life, my Lupus life, and how it has brought her from a mother of three entering the ‘empty nest’ phase of her life, to wading through the health troubles of one of her children (me). I only asked for ’500 words or so.’ But here you go.
You know when you get out old pictures and reminisce on when you were younger? It was 5 years ago in October that these scans were taken. That is when my life, world, and body became alien and different to me. Nothing has been the same since. I will never be that person, not the naive, rusting, lassez faire attitude nor the characteristically robust, boisterous young woman, or the healthy and physically active go-getter. I do not regret or yearn for her. Some of the changes are just natural and come from maturing into adulthood, they would have happened regardless. I think I am a better, more considerate and caring person now. I hope I have been able to give others what they need from me, when I could. And I hope I find a place to be happy in the world to come.
Another new blog post...as much as I hate lupus, I’m thankful that it lead me to blogging. Even though my IG stats suck right now. I’m trying to blog again for the sheer joy and fun of it again like I was in 2015 and not get so caught up in stats. Anyway, there’s a new post about my lupus and how I started blogging #linkinbio
I was diagnosed with my illness as an adult. I never really thought my early years of adulthood would see me being cared for by anyone, let alone my parents. I am blessed to be in a situation in which this is possible, and blessed that my situation is not like some younger adults who are in a patient-carer situation. But my illness is Lupus, and I cannot truly know what is in my future, or how long that will be. I guess that is why my parents are my carers. Read about my first few years and what has already happened.
My latest blog post talks about loving and trusting in God in the midst of having a chronic illness. Oh and I talk more in to detail about my hospitalization at the beginning of the month. Warning: it’s pretty heavy. If you’d like to read, please check it out #linkinbio