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. 

 

#ILiveWithLupus – February 17, 2018

Its going to be an interesting weekend.

Got home a little past midnight. Usher in restlessness for hours. Electricity (lights) go out at about 2.36am.

2.37am mitigating a panic attack. Here’s me lighting up the flashlight on the phone so I can look for the phone so I can light up the flashlight so it won’t be too dark in here.

Brain fog, visibility zero.

Just glad I fell asleep after laughing like a hyena, at myself, but probably not in glee. But you can’t cry. It only hurts when you cry.

#ILiveWithLupus

#IliveWithLupus – February 11, 2018

Weekend recap: Saturday Jam Session at my house introduced me to an amazing bunch of humans. You have no idea how happy this made me, Gathoni Ciss. Thank you from the bottom of my heart.

My heart was full from the music and the laughter, and Hailey’s random entrance and her “I’m happy, happy, happy!” My mum is def going to buy a guitar now.

Pain crisis. I had a slight fever Saturday night so some of my scheduled meds were deferred, which meant I had to go through an expected pain crisis without pain mitigation. (One of my regular dawas triggers pain but it is necessary right now because of the Scleroderma situation)

Sunday morning. Listened to the JW meeting recordings which as always is refreshing and makes me feel a little less left out, then spent a few minutes with 4 kids to whom I had the joy of introducing the love for books. Mum supervised the 2 year old’s colouring while I discussed afro-science fiction with the 14 year old.

Finally got my meds, which reduced the pain. Tomorrow I have to have a few more tests to figure out why my ESR and CRP keep shooting up even though I don’t seem to have an infection.

10.32pm: I am going to be alright. Don’t worry, be happy.

#ILiveWithLupus

Perspective – The Lupus Story

If I had a husband, the neighbours would think he was an abusive SOB because once in a while I’ll wake up with a swollen, bruised face, eyes nearly or definitely swollen shut, swollen, cracked lips… It almost always corresponds with kidney problems, an infection, or just inflammation which can be unavoidable when you have Lupus.

A few days ago, I gave in to temptation and took a bite of pizza. Just a bite. The next morning I woke up feeling like I had been kicked then trampled on by a donkey, and when I looked in the mirror I quite looked the part. I’m not even sure what this means. That I’m now gravely intolerant to something in the pizza, cheese, wheat, one of the toppings? Or I reacted to something else I ate earlier or later? Or it has nothing at all to do with what I ate.

I may have been sitting here feeling a little down. But I just saw a post by another Lupus Warrior’s mum and I realised perspective matters. Once you have been diagnosed with chronic illness, you really have no choice but to fight till the end. But perspective matters. Being honest with yourself, accepting and grieving the changes from your former life to this one, being kind to yourself ( which means both self care as well as accepting limitations), all these can help to cope.

But once in a while a depressive funk will cover you. You may have to ride it out, but at some point remind yourself to just keep putting one foot in front of the other. Kind of like my new early morning walk routine. 500 metres from my house and I’m asking myself what I’m doing. Getting back home is usually sweat, tears and one step at a time. Literally. I take a step and take a rest because the pain is a thousand stabs in my back.

After the infection of March-April, my pelvic floor was so badly damaged, which together with my weight issues is a really bad thing. The doc asked me to first give it time to heal, but now that I’m finished with treatment, I’m hoping I can get back to walking again. I honestly can’t afford physiotherapy, but I’ve worked hard on home exercises and some yoga for a month or so, and hopefully walking will stop being so painful soon.

Perspective. Hope. #LupusAwareness

Filling Time – The Lupus Story

There’s things you don’t notice when you are a first timer or occasional-er in a hospital. You come in, try to figure out where you are supposed to go, get your ticket, wait for what seems like forever, then you finally see your doctor and you get sent for tests or get a prescription. Eventually, you go home, recover and move on.

Or it could be that the process above comes on a German speed train and you end up in the high dependency centres, recovering from illness, injury or surgery. Then you get shifted to a normal ward for longer recovery. Your folks or a hospital assigned person would then help you with the discharge process. You go home, recover and move on.

You notice that I am speaking about the better sections of the Kenyan medical care system. Trust me, its a jungle out there in the public hospitals.

Either way, a one off trip, to a public or private medical centre / hospital is very different from repeated trips just trying to either alleviate pain/discomfort or death from illness.

Keep coming around, and you start to know how things work, which drawer the cannulas are kept in, which nurse is worrying about her son who is in STD 8, which phlebotomy technician just became a granddad. You start to notice repeat faces in the waiting room. And when the indignity of illness and the broken medical care system throws you together a little too often, you shed the stoic Kenyan distance and you say hello.

The waiting rooms tend to fill out. So next week, you’ll give your seat to Mama Karanja because she is obviously in a lot more pain than you are. The week after that Mzee Bernard will give you his seat, and the first timers will wonder why a bent old man would give his seat to a young woman who doesn’t even look that sick. Mr. Thomas, the high school Principal always brings the newspapers and you have to fight with Mark for the puzzle pages. Lucy never says a word, but you all smile knowingly when she rolls her eyes every time one of her mother’s friends stops by (there’s always a new one), and tells Lucy, ‘It will be well.’ Like there could something that could be well with a 16 year old being gnarled and broken by juvenile arthritis.

Two months down the line, and your clinic visits are some kind of support group. You find out that Mama Karanja’s insurance had some kind of problem, so she missed a bunch of sessions and then had to look for Dr. L at his second clinic where consultations are cheaper. Mzee Bernard’s nephew works at a pharmacy in town where you can get meds at nearly half the price of what the hospital dispenses their meds at. Mr. Thomas is trying out alkaline water. Mark is going to India. His cousin is going to donate a kidney. Lucy is trying to convince her mum to let her attend regular school.

And my phone, tablet and computer all remember the Guest WiFi Password.

IMG_20170710_140644_663.jpg

Most first timers / occasional-ers don’t think to ask for the WiFi password because when they come around into the hospital environment they are either feeling too sick or too anxious to attempt any of the activities that might require an internet connection.

But you find yourself in a waiting room or hospital bed too often, and you begin to need to fill the endless waiting periods with something other than waiting for the next drip drop to fall. You watch, you read, you eavesdrop, you daydream, you solicit for information that may sometimes quite honestly not be your business. And when you get the WiFi password, everything just seems right with the world.

#Lupussucks #IgottheWiFi #HospitalCeilings