April /May Lupus Awareness Season

I am so excited about the April / May She Blossoms Lupus Awareness season. Just in case you are wondering, the topic this year is #LupusStories and #ILiveWithLupus, so send us your stories! Tell us about your challenges and victories! And if you’d like to volunteer or support the campaign, please inbox me Juliet Maruru or WhatsApp me 0725758389. (No Calls).

In the meantime, do you recognize these symptoms?

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#ILiveWithLupus – April 3, 2018

New Normals

I don’t know if I am weird because I have been ill so long, or whether I would be weird anyhow. I’m the child that the entire family isn’t ever sure of.

This one time, I accidentally told on my brother and stepbrothers. I had no idea that what they were planning was bad, or that the folks had no idea about it. So I asked to be included, at which point I outed my brothers and I guess they were punished.

To get back at me, the next day my teenage brothers locked 5 year old me in a study that only had books, an old phonograph, and Classical and Operatic Music records. (We used to live in a house that was once occupied by some old kaburu and for some reason he left his stuff behind when he did the mzungu arudi kwao). ANYWAY, books? classical music? All the tenors? I was in heaven!

Years later, I have stumbled through my life trying hard but failing spectacularly at being normal. Being weak and sickly hasn’t helped much. It makes me even more awkward and gives me the worst social anxiety. It can be a little lonely, because sooner or later you’ll start to notice that you get chosen last, or no one wants you on their team at all.

But its also awesome because your loneliness pushes you to develop these other skills that make you invaluable in certain cases, and often you meet other people just like you, or people willing to accept you with all your quirkiness.

The thing I have been working hard on all my life is to listen to people, be kind to them, and make sure I never hurt anyone the way I have been hurt. This can be hard when you are terrible at reading cues and body language, but I work at it actively.

I started writing this update because a 14 year old friend of mine told me that I’m awesome cos I’m weird. It got me in the feels and off he went with half my collection of graphic novels which I almost never lend to anyone.

Have a great April.

#ILiveWithLupus
#BooksDriveMeWild
#AlsoPlacidoDomingo

#ILiveWthLupus – March 22, 2018

Food. Shelter. Clothing.

I haven’t written much to my name in the last few years. When there’s a direct line from a client’s bank account to yours, you can get pretty awesome at writing other people’s stories – Fiction or Nonfiction. What I write under pseudonyms sells just enough to send back a couple of euros every few weeks, and I doubt it would do any better if published under my government name.

But I loved my work. All of it! Keeper of social media account passwords, writer, researcher, editor, marketer, teacher assistant, remedial tutor, creative writing instructor, mover of furniture, taster of recipes, first ear of friends’ music, first reader of friends’ manuscripts… ah, I get carried away! I love life, art and love 😎

But by September / October 2017, I could hardly remember my own name let alone work out my daily meds. And so I took a step back rather than let clients down, or disappoint friends. It wasn’t really a choice, more of a stark realisation that I wasn’t all there and my body couldn’t handle it.

There comes a time in a Lupus patient’s or chronically ill patient’s life when your body just cannot support your need to work, the things you love, even when for example, you rely on these to earn your living and / or support a family.

Losing your ability to earn a living can be devastating for many reasons. One, is of course the straight forward – where’s the food, shelter, clothing going to come from? You’ll worry about paying for your own medical care. You’ll feel keenly the loss of identity attached to your work.

I mentioned my writing first because I made a decision to earn money from my writing in a way that didn’t give me recognition beyond a paycheck. It took a while but I accepted and appreciated that the paycheck helps to make the ends meet. There’s really no shame in that, though I have doubted myself countless times in the last few years.

I am, therefore, not new to the idea of a shaken concept of identity when it is based on creativity and intellectual rights. Having to give up my job(s) because my body couldn’t handle it felt like a distant second compared to the first. But imagine countless others who have to step off the plate of being doctors, nurses, teachers, chemists, chefs, architects, farmers, pilots, military men and women, sometimes even from being fulltime moms and dads, and you can add to this endless list!

While insurance, early pensions, disability packages, side investments etc can help make the impact less, more likely than not, many are found unprepared when chronic illness strikes. Many struggle and flounder for years, hoping that the flare that finally floors you will be staved off forever. Many die on the treadmill, having spent themselves to the end. And many more have to watch their bodies fail them, their jobs and lives slowly sail past, often their families crumble and when they do not they carry the heavy load of keeping and caring for them.

Yes, I have painted the darkest nightmare of any one facing autoimmune or chronic illness.

We can talk about it.

#ILiveWithLupus
#LupusAwareness
#AutoimmuneAwareness

#ILiveWithLupus – March 8, 2018

I’m terrified that a lot of effort and money goes into testing and investigations when you have an autoimmune disease, but after diagnosis and the life after, its almost like you are on your own. Conversations are around surviving and fighting, and even if you have the kindest, most informed doctor there is still an element of helplessness toward dealing with the disease when it is active.

#ILiveWithLupus

#AskaQuestion about Lupus

Do you have questions?

March is #Autoimmune Awareness Month. I live with 5 autoimmune disorders plus #Fibromyalgia. I have been talking about #Lupus, Mixed Connective Tissue Disease, Sicca (#Sjögren‘s), #Scleroderma and#Raynaud‘s since March 2016 which is when my awesome friends Anne EbosoWangari Grace and Ki Bali kicked me out of my little closet and pretty much triggered the transformation of She Blossoms from a once-in-a-while writing spirit to a full fledged #art4health awareness carriage.

So, what have you wanted to ask or wondered about autoimmune disorders and /or She Blossoms?

#ILiveWithLupus – March 2, 2018

I still can’t get over how SOME Kenyan doctors just disregard a patient’s agency.

Yes, I respect the many years you spent in medical school, and your experience as a doctor. But this is my body and I’ll have to go home and deal with it. So we need to WORK TOGETHER and find the best way to deal with this #autoimmune situation.

My asking questions to understand what is going on, and why certain meds might work better than others is not questioning your intelligence or your experience. I just need to be part of making the best decisions about my own healthcare.

#ILiveWithLupus – February 26, 2018

So we still haven’t figured out this Scleroderma situation. Insides hurt. Peripheries hurt.

But…

I woke up today and cleaned my room and it felt like I moved mountains. Guillermo has been moody so I was worried he was coming down with something. But he was willing to play, ran around until we both collapsed in giggles. I left him cuddling with the kittens.

Its going to be a long day for me. The tests should be out in about an hour from now. It will probably be another session of doc hmming and sighing, then asking me how I feel again and me wondering what the point is before repeating it all over again.