Thank You For Your Kind Prayers But Just So You Know, They Are Hurtful.

What does it mean when the Lupus starter pack information says “Lupus has no cure“?

I’m asking this question from the personal point of view. I’m asking from the ‘this person who has a full and complex personality, a wide range of opinions, hopes, dreams, faith – but has now been told that they have to live with a condition that originates from scrambled, disconnected, misdirected directives on the cellular level that results in a confusing array of symptoms for the rest of their lives’ point of view.

I’ve just had a snapshot of an ongoing conversation with a friend who is living with another chronic illness that ‘has no cure’. People, wonderful, kind, at a loss but well-meaning folks often come up to people who are ill and tell them something along the lines of ‘I have been praying for you. You have been healed. If you believe it, in Jesus name you are healed.’

So, what happens the next day, or the day after that, if I wake up and I still have Lupus, or Cancer, or Bipolar Disorder?

There are several things that bother me about these wonderful, inspired blurts of healing.

So, let’s say your person who has just been diagnosed with Lupus is in fact a fellow believer. The bottom line fact is, in this life, in this world, in this set of realities, they will have to live with Lupus or whatever and the challenges that condition brings. Faith in God, belief in his power, hope in his promise of wonderful realities to come does not negate that in this moment, day to day, we are living in a reality that has violence, corruption, inequities, HIV/AIDS, Malaria, Cancer, Lupus and all those other nasty things we have to live with.

Faith in God and hope in his promises can provide a positive outlook, give you strength and keep you warm if that’s what you choose. And accepting the reality of Lupus or any other chronic or even terminal illness does not have to take away from that. It should not.

What that wonderful well-meaning prayer does to the person who has to accept Lupus, take care of themselves, take their meds faithfully, protect themselves from sun exposure and infection risks, eat properly, rest when necessary, exercise appropriately, all those things a person living with a chronic illness has to be aware of and take extra care of – what that prayer does to him or her is say, ‘You don’t have faith. You don’t believe. You don’t have what it takes to get well and stay healed forever.’ 

It is not kind. It is not understanding. It is not supportive. And it is even not biblical, if we have to go there. If we follow the scriptural thread, we get sick, get old, and die because we are imperfect. We are imperfect from the Adamic sin. Jesus’ death paid a ransom which guarantees life without illness and without death for everyone who exercises faith in Jesus and that ransom sacrifice. But perfection doesn’t miraculously appear in this system of things, not in this set of realities. Everything has to be made new first. Then death, sorrow and mourning will be no more. (Romans 5. I Peter 3. Revelations 21. Isaiah 33:24)

But let’s put the bible down for a second, and think with both logic and empathy. I have Lupus. Yes, it sometime makes me very sick. And I am paranoid about being around people with the flu or being exposed to too much sun because I know the kind of pain and discomfort that brings later. I take my meds faithfully. I self inject my weekly dose of chemo. I take my vitamins and supplements. I still feel sick most of the time but the precautions I take stop my body from going into autoimmune overdrive and literally destroying my organs and tissue from the inside out.

I have to live like this for the rest of my life and I have accepted it. I am in pain a lot of the times but I am happy. I try to be productive, I love and care for my people as much as I can. I take good care of my pets. I love books. And though I can’t do much in them, I adore boots. I love mystery and police procedurals. I have watched all of them. I read voraciously, indiscriminately about autoimmune disease, about new frontiers in space exploration, about obscure cultures, and music from different corners of the earth. I love kids but recently have had to stay away from them until my new antibody therapy can kick in and some of my neutrophils can grow. I run an informal library lending service for kids from house so I really need to send someone to ferret out used children’s books from somewhere.

I have Lupus, but I am me and I am ok.

What does your wonderful, mysterious blurt of healing do to me? I know it makes you feel better. But for me, it means that you do not see me as a complete human being because I have Lupus. It means that if I don’t get better I have somehow let you down. It means quite simply that you have not understood or taken the time to understand what Lupus is, and so basically this entire post is moot. We are not friends. So I really shouldn’t care what you think.

Anyone who cares about someone living with a chronic illness will want to understand what is going on. I love that my mother is a woman of faith and prayer. Every day she prays for me to have strength to endure whatever storms Lupus will bring. She prays for me to come out of it a better and stronger person. She prays for me to not give up on my true friends and on love. She prays for me to find answers even when it is dark. And I pray for her to find comfort, and courage, and joy beyond all measure.

P.S. The visualisation below was made by artist Sylvenus Kym Kym at a time when I was at an ultimate low. It is a reminder that though Lupus hurts, cripples and changes my outward appearance on the inside I am still me.

Lupus is just this thing that makes me more fabulous!

Lupus is just this thing that makes me more fabulous!

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#Together4Winnie – A Lupus Story

This is Winnie (Veronica Opiyo-Ogada). A mom, a wife, a sister, a daughter, a friend, a fighter. She is journeying through a very difficult leg of Life with Lupus.

Winnie needs YOUR help. She is fighting bravely. Help her win. Your kind DONATIONS will go a long way. ADD a few prayers and all the positive thoughts. 

 

June 16 – A Concert for #LupusAwareness

Join us for a fun afternoon of music & Lupus Awareness. Conversations with persons living with Lupus, their supporters & nutritionists.

Sing along and dance to music by: Meryl Paige | Ach13ng | Nahya | Socratess | Ythera.

Date: June 16, 2018
Time: 2.00pm onwards
Venue: August 7 Memorial Park
Entry: KES 30 (goes to park entry)

Visit Facebook Event Page | She Blossoms Facebook Page

Kanja Mwingirwa’s Story – #LupusAwarenessMonth

I grew up happy, healthy and normal. I had a life trajectory, a plan detailing it all step by step. Life had other ideas though, ideas I still do not agree with. When I was diagnosed with lupus at the age of 23, I thought my life had turned upside down. Now I know for sure that it turned upside down on that day. However, with the advent of modern medicine and a strong support system, I have been able to live a somewhat normal life.

It started off as unshakeable fatigue, the kind of fatigue I simply cannot explain. The kind of fatigue one can’t shake off even after hours of sleep. At 23 I didn’t know how to tell people I was always tired. But really, I was. Little activities drained the energy out of me. I remember dreading the bathroom and wearing shoes that had laces. My back hurt, my neck, my shoulders, my arms…parts of my body that I didn’t even know I had hurt. It was strange to me..all this pain. I was supposed to be young and energetic. The adjective that people typically used to describe me before was ‘bubbly’, this wasn’t bubby, this was pain. This was fatigue. This was the new normal. This was lupus.

It’s been three years since my diagnosis. I have been through more than I want to remember, but I’m still here and I’m still fighting. The pain hasn’t subsided but I know how to manage it now. The fatigue is not as bad as it was but only because I realize now that I should do light exercise not sleep all day. I will live to fight another day.

~ Kanja Mwingirwa

Waithira’s Story – #LupusAwarenessMonth

I am so glad that devices today have the option of speak-to-type icon. My fingers are so swollen, I cannot type. I am currently going through a bout of Costochondritis which for some reason is not responsive to the steroid shot that I got a week ago and the NSAIDS I have been put under. Today my Prednisone dose was increased to 40mg. Excuse the fact that we were tapering before the flare came in uninvited.

This has been my life for the last 16 years though I only got the Lupus diagnosis 3 years back. Before then, I dealt with Rheumatic Heart Disease and Rheumatoid Arthritis which I would say I had learnt to deal and live with quite well. I wore it too damn well, if you ask me. I never knew much about the diseases and maybe that is what kept me sane.

It’s different today. I know too much. I spend my spare time reading medical journals and writing to different facilities just to see if I can get more answers. Some will respond, others will not.

God forbid that you see my file. It is full of my notes. Why? Because I do my own research before I go to the doctor’s, make my diagnosis and a list of medication that could probably work for me. In my thinking, I am easing the doctor’s burden but in real sense, I am just trying to get a footing into a world that I do not know how to tread.

I have my family and close friends but I am extremely lonely or maybe I feel alone. I do not know which one it is. Maybe I should consider keeping a pet but I’m not sure if I’ll always have the energy for my pet- a feline most probably. Today is one of those days that my mother had to clean me, dress me and help me feed because the pain is excruciating.

I wish I could find it within me to cry but after 16 years, it does not make sense to shed tears anymore. I almost feel like I am accustomed to pain. Pain is my kind of normal. I take it as it comes and when it is too bad, I hope the good Lord will give me sleep because sleep heals one.

I want to love and to be loved. But very few strangers accept me for who I am. “You walk too slowly” or “You spend too much time indoors” or “You cannot get a boyfriend if you are always stuck in the house” and the mother of them all, “ Is the pain that bad? Try creating a thick skin to pain.” My threshold to pain is already high. If you have a problem with my speed, that’s fine but please reserve your comments. I fight everyday, fighting an invisible war against a visible Goliath.

#ILiveWithLupus

#ILiveWithLupus – April 10, 2018

What should I eat?

One of the first questions newly diagnosed Lupies will ask me is, ‘So is there a specific Lupus Diet I should be eating?’

My answer. Eat a balanced diet. Drink enough water. Do not overdo sugar, salt and fat, and avoid processed foods.

When you go online, you will, of course, find conversations that talk about foods that COULD make a person with autoimmune disease flare or get inflamed. You’ll see pointers towards nightshade plants – potatoes, tomatoes, peppers, eggplants, etc -, foods that contain gluten – wheat, barley, rye, therefore breads, pastas etc -, dairy products, alfafa and supplements that are meant to raise your immune system. So should you avoid these foods? Probably. How will you know what to avoid?

The first thing that will help you make your decision on what to exclude from your diet is a basic understanding of what autoimmune disease is.

Autoimmune disease is a condition where your body begins to develop immune responses against itself. Usually the body creates antibodies that target foreign cells that have invaded the body. In autoimmune disease, auto-antibodies target the body’s own cells and tissue, resulting in inflammation and systemic failure.

Your diet should ideally not encourage your rogue immune system to grow, while providing you with needed nutritional support. In this particular case, it would be wise to avoid dietary supplements and herbs that activate the immune system.

Your diet should also not increase the inflammation in your body. If you notice for example that you have constant gastrointestinal issues eliminating dairy products might help. If efforts to reduce joint pains are nought, you might consider examining your consumption of nightshade plants as these might have a hand in the situation.

Your diet should also consider the medical regimens you are receiving to control your autoimmune condition. Some drugs deplete Vitamin B12, Folic Acid and make it harder for you to absorb Vitamin D and Calcium. Your diet should be the primary source of replenishment before you have to use prescribed supplements. Leafy greens and fruits are a very important ingredient.

In the end, however, you will have to tinker around until you figure out what is right for you. You will definitely not want to go with popular fads, you can’t afford to be cool. Sometimes you might have to resort to unconventional ways of eating and if you do, there should be no shame.

Most importantly, READ. Read up on basic nutrition, then read on nutrition for immuno-compromised bodies. Talk to fellow Lupies. Find out what the options are, combine that with what you know and work at figuring it out.

#ILiveWithLupus – April 8, 2018

On Bad Days

I have always felt that there is a bit of a hole in the chain link fence of awareness campaigns. See awareness campaigns pose patients as warriors and survivors, and this has the very well meaning intention of offering hope and encouragement to those living through disease and disorders.

Unfortunately, to the individual living every day with a disease or a disorder, not every day is all smiles and psyched up with hope and confidence. Some days after we have been battered by pain and illness, and the added challenge of societal dysfunction, some days we don’t have our swords, spears and vibranium shields lined up. Some days, we crawl into dark closets and sob until we pass out. Some days we are too weak to even get up out of bed in the morning to face the day.

There’s nothing wrong with having bad days, with having days when you doubt your very essence. Unfortunately for persons living with autoimmune and chronic illness, we often have more bad days than good.

Our overcoming the challenges we face, the essence of our spirit of survival and courage in battle is in the fact that we hold on one more day, breath in and out, even incredibly smile during the worst of times… We are warriors and survivors because in this moment, we are.

Truth be told though, I wince inwardly every time someone says to me, ‘But you are a fighter, you’ll make it!’

Of course, I know I will, but right now I am in so much damned pain that I am trying to live through. I try to consider what I would say if I stood at someone’s bedside and they were in pain. I think I would acknowledge their pain, and if I couldn’t figure out what else to say, I’d be quiet rather than gloss over their pain at that moment.

I’ve discovered something that encourages me without putting too much pressure on me. My friends simply come and hang around doing normal things, like cooking or, this one was special, playing music, with actual guitars and all. And when its days that I can’t sit up and ‘warrior’, they don’t make a big deal of it. And when I can, I go out of my way to be there for them, or to be there for someone who needs it even if they are not my friends.

Don’t doubt your friend or relative’s strength and courage just because they are having a bad day. And please don’t gloss over their every day challenges and pain.