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

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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.

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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

Mimicry – The Lupus Story

Although my official diagnosis came in 2016, different doctors played around with my test results for years, mentioning Lupus but convincing me that the symptom that had reared its head was more important than the root cause.

That’s what Lupus is like. In the first place, it can mimic other diseases. But it also causes other symptoms which are diseases in themselves. In the hands of incompetent or callous doctors (it can be either or), treatment will circle around symptoms while the base disease rages on uncontrolled. This is what happened to me.

It took going all the way to India to find a doctor who was willing to look at the root cause instead of being confused by all these other raging symptoms.

The amazing thing I have discovered since then, is that there are great Lupus and Internal medicine doctors in Kenya. I just never seemed to reach them.

Medical care in Kenya is at best complicated. For someone living with Lupus, medical care is incredibly expensive. Insurance and NHIF do not always cover all our costs. We so often get whammied by unexpected symptom developments.

Example: in January 2017, my blood test results were awesome. I was looking forward to completing my chemo course without the usual complications – bone marrow depletion, anemia, infection.

The week I completed my chemo, I developed a sore throat. That went away but I started experiencing severe pain on my left side. Pancreatitis was diagnosed. The usual course of antibiotics, painkillers and rehydration.

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In April, kidney exams including a biopsy suggested early Lupus Nephritis – which is when Lupus begins to attack the kidneys.

That diagnosis is now being reviewed because another doctor thinks I simply have Pelvic Inflammatory Disease as a result of a compromised immunity (Usually, PID is a result of untreated STI).

This is Systemic Lupus Erythematosus. It works itself, attacking system after system. With treatment, the disease itself can be controlled so it does not generate other symptoms. But what Lupus does is take advantage of any tiny chance, heightened stress levels, surgery, pregnancy, birth, trauma and it blows up. For me, stress is a problem.

Managing Lupus for me feels like walking a tight rope all the time. If you asked me how I am doing right now, and I answered you honestly, I wouldn’t talk about pain or constant nausea. I’d tell you how tired I am from trying to stay upright and on the rope.

I’d like to tell a happy hippy story here because then you’d could walk away not feeling awkward. But as much as I have HOPE and I survive on FAITH, some times can be tough. I’d be lying and be doing a disservice to the people living with Lupus who often feel like I feel right now.

Living with Lupus, being a Lupus Warrior, a Lupus Survivor – the expectation for us is to be constant cheer leaders for ourselves and often for our supporters. But sometimes, Lupus Warriors get tired, not of the fight, but just of the day. And on that day, what we need is not another ‘It will be well,’ because we know and believe that.

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On that day, what we need is someone to sit next to us and just be there.

Memory Blackhole – The Lupus Story

The thing about Online Support groups, well, first there’s the knowledge that your problems are not unique so that’s comforting. And then there’s learning how others cope. But with Lupus Support Groups – You learn that you are not so unique. And you are not so unique.

So take, for example, my CNS Lupus symptoms. The one that’s bothered me more than anything is aphasia & memory loss.

Everyone who knows me knows I love to talk. I also love to read, learn new things about random things and show off that knowledge in too much talking.

So in the last year, Lupus has taken that away from me because no matter how much I read, my brain can decide to wipe out chunks of information. And what I do remember, my brain can decide to make it hard for me to communicate in speech. I struggle in getting together a spoken sentence, forget words completely – this doesn’t happen when I’m writing by the way, only in speech. So in front of an audience I can be a blithering, dithering idiot, and it is so embarrassing.

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And there’s the other thing about my brain deleting scenes of my life. Like full whole chunks of it, people, places… only I haven’t forgotten that boy who broke my heart. I actually met my cousin and I had absolutely no idea who she was. I did manage to fake it for several minutes cos I thought she was a work colleague or something. Imagine my shock when I managed to pull my mum aside and ask her who the lady was and she tells OMG, that’s your cousin! I just died a little.

So Online Support Groups. Yes, I’m not Unique. And I’m not Unique. #Lupus has no cure. Early diagnosis and regular, proper care can improve quality of life and prognosis so much a person living with Lupus could have a normal life!

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#UniversalHealthCoverage #LupusAwareness

Tic Tac Wars – The Lupus Story

Let’s talk about #Prednisone. So earlier today, I was talking to a She Blossoms warrior about her Lupus flare and we discussed prednisone issues, which range from carb craving to roid rage like you’ve never seen before.

I remembered a lady in one of the support groups I frequent describing prednisone as the ‘devil’s tic tacs’. Yeah. It can be bad. Between the carb and sugar craving, and the extreme fatigue from Lupus, long term prednisone use (or any type of corticosteroid use) can mean piling up of body weight. This is one of the reasons I advocate for proper diet and daily exercise, even though it may be difficult and even painful to achieve.

At the beginning, the most common feature of corticosteroid use in #Lupus care is the moon shape face that most Lupies have. With prolonged use, and biological predisposition, some persons will go into the next stage where they develop cushingoid features.

Cushingoid features means that the person has abnormal distribution of fat, with truncal obesity, a hump behind the neck, thin arms and legs. This happens because prolonged use of corticosteroid can disable the body’s ability to produce its own cortisol. In some people, this disability is permanent resulting in a condition called Cushing’s Syndrome which requires long term care alongside Lupus Care.

This is what happened to me.

If you live with Lupus, you cannot completely avoid corticosteroid use as they are very effective in short term mitigation during Lupus flare ups.

– Corticosteroids such as prednisone, prednisolone and cortisone should ideally be used for a short time. Check your prescription and discuss openly with your doctor how long you will be taking them. DO NOT SELF MEDICATE.

– If you have been taking Corticosteroids for a prolonged period, do not stop abruptly as this could have adverse effects on your body including cardiac arrest or stroke. Consult your doctor who should assist you in setting up a gradual taper off system.

– Corticosteroids make you glucose intolerant, which creates false hunger. Eating carbs and high sugar makes you feel better. Unfortunately, this can result in weight gain which could lead to secondary issues like diabetes and heart disease.

– Corticosteroids are also likely to have psychological side effects, what is described as roid rage but could include euphoria, dizziness and hallucinations.

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– Doctors often weight the benefits of the drug against its side effects. In most instances, Corticosteroids are cheap and effective ways of controlling severe autoimmune activity which would otherwise lead to complications such as organ failure. Weigh that against weight gain and some anger issues, and the answer is clear.

I’d love to hear your #prednisone stories.

CTRL + S – 2017 Lupie Journal

2017 has been a hard year. I’ve felt so much more pain and discomfort than I thought I could bear. I’ve had so many thoughts, crawled to the bottom dredges of depression, pulled myself over the barrel and forced myself to walk home. I’ve spent days and long hours in hospital. And there’s days I was sure I wouldn’t make it. I survived. And I still keep surviving until the end.

One of the first coping mechanisms encouraged to any autoimmune patient is to journal. Not only is it therapeutic, it can also help you track symptoms, notice patterns in flare up, identify foods and circumstances your body is intolerant to, et cetera et cetera.

Since I committed to raising Lupus Awareness, I find that I post a lot of my journey on social media. This, however, is a lot different from my private journal, where I track minutiae including meals, exercise, pain levels.

It has taken me a lot to admit fear, anxiety and sometimes absolute panic at the various situations and decisions that I have to make every day with regards to coping with living with 5 autoimmune conditions. But I realise that often sharing my emotional discomfort is not only liberating to me, but reassuring to someone else going through the same. So I keep on sharing, mostly on Facebook, but occasionally, I thread on Twitter too.

I just wanted to save some of those thoughts from 2017 here.

1. Today when I’m so tired from fighting yesterday and everything still hurts, I need to read this note.

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Maybe I know a few people needing to read this. Stay strong Spoonies. We can do it. #AutoimmuneWarriors

2. When I had to speak at a Girls Mentorship Event: I’m a little nervous about speaking to young women about what it would take to go on and forge a career if one day a doctor told you you’d be sick for the rest of your life. So far my notes have involved a lot of self doubt, rethinking, explosive diarrhea and that awesome night in New Delhi. It’s been AWESOME!

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3. We had a laugh with doc over this yesterday. That I’m structurally well, but clinically very sick. My lab test results have been a little all over the place. Just two months ago I was celebrating hints of remission. I cannot be angry about this, although I am quite frustrated. #LupusLife #LupusAwareness #SjorgrensSeason

 

4. I’ve been talking about crossover autoimmune diseases. I’m in Sjögren’s/Lupus season. Dry eye, dry mouth, severe dehydration, fatigue, inflammation, pyelonephritis, pancreatitis (this last one hurt like a mother!).

The effects of Sjögren’s are so extensive I probably can’t list them all. Let’s start with inability to control body temperature (because no sweat), teeth decay and breaking (yes, teeth just crack and fall out), hyperacidity and gastric reflux (can become ulcerative because of mucosa dryness), painful sex for women (no lubrication na huko), organ desiccation leading to dysfunction such as gall bladder blockage and pancreatitis, joint pain because no synovial fluid…. I really can’t go through the entire list here.

But it explains why I’ve needed intervention since my Sjögren’s symptoms flared a month or so ago. Much of it has been in the form of pain control and rehydration and electrolyte balancing.

I’m glad I have a team of doctors both here and in India that cares to explain what is happening to me. When you are in pain, fear is your worst enemy. Understanding what is going on can give you a semblance of control, and give you a chance to regrasp your hope and faith.

Support is a huge deal, and I am eternally grateful for my mum’s levelheaded support.

5.  It occurs to me, that even when a person living with #Lupus is not ill (in flare), they are still quite busy managing Lupus.

A person, that I promptly pushed to the periphery of my life, once laughed at me for ‘faking mzungu-ness’ because my mother and I were talking about having a hard time finding a #sunscreen cream that was both strong enough and didn’t make my skin chalky but one I could also afford. And this was after she came to ‘spend the night so we could explain this Lupus’.

Oh, shoot, mixing narratives. Some of the things Lupies have to do, some of the fears we live with, are very real, based on facts, built on experience.

I am terrified of indoor lighting that emits UV rays. While in India, I got incredibly ill and the doctor asked me about the lighting at the hostel we were staying at. She explained that what I was experiencing was UV sickness either because I went out in the sun too long or because I was exposed to UV lighting. In essence, my body is super sensitive to UV rays and has a hard time dealing with cells affected by UV rays.

When we came home, the first thing I did was change the bulbs from the light saver bulbs which emit more UV rays to the yellow bulbs which make my electricity bill look like my phone number.

All these precautions just to minimise the pain I live with every day. And sometimes, even after working so hard, we still get whammied by Lupus flares.

 

6. So, I know fellow Lupies will prob look at me with side eye because living with Lupus is accepting pain, but aki this weekend me I have prayed for this cup to be passed from me. So there’s the fever and the things paining in my stomach or general torso and flank area, sijui internal bleeding at biopsy sites, my hip decided to ache this weekend, then Raynaud’s pain both hands and feet.

Emotional yoyo from ‘I can totally ace this’ to pain rage, and sit in the closet and weep despair, then back to ‘Lupus is not winning!’. My dog is just whining and my cats have lined up kwa corner to watch pain madness.

Oh, I have 3 cats now. Fluffy Cat – my beautiful princess baby who does not deserve this stress, Coehlo cat – whom Guillermo adopted from his walks and forced on us, and Snowy cat – maybe his other family has gone on holiday or something.

#MyLupusLife #LupusStillNotWinning

7. Tumefika hapa.

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The good thing is infusions are 3/4 hours max unless I need saline or Ringers. My veins have refused the longer lasting port so we basically have to start a new port every day, and because the prescription is for roughly a month I don’t qualify for the permanent port. #LupusLife

Doc was lecturing me on being thankful for everything cos I was whiny today when they had to go for the leg veins. But I can’t wait for this thing to go into remission SOMETIME SOON! That and Isaiah 33:24, mayne. Anytime. Anytime, and yet not my will…

8. Doc and I (the other one, who wasn’t my doctor) used to joke that the reason I survived Lupus fairly well, and bounced back from most flares, was because I have always been able to eat, therefore, take in nutrients. There was a downside because I would gain weight from glucocorticoid hunger.

If you don’t eat when you are on steroids, you get weak and shaky pretty fast, which is why most people try to cheat with soda. Soda is, sadly, just as bad as eating a fatty meal. You’ll gain weight, and diabetes. The trick is to get your body used to eating healthy but often, so you can maintain your sugar levels without gaining too much weight. But you’ll still probably gain water weight, and likely not lose existing weight.

About my digestive system, the lesson I’m learning now is that all body systems are quite fragile.

 

9. Being chronically ill might mean numerous hospital visits, being prodded this way that, and wondering which pair of underwear you are wearing because a. hospital robes are wide open no dignity and b. sometimes emergency procedures mean you end up near naked with either a catheter up your bits, bloody painful lines in your femoral artery (thigh), or pipes down your throat.

I’ve thought about underwear a lot this week. #LupusLife

10. It is always a cold reminder of our own mortality when a fellow Lupus warrior completes their battle. So I understand when Kanja Mwingirwa says she hàs no idea what to feel. Emily fought hard, lived her life as best as she could. She is now no longer in pain and lives in the memory of the God of all Comfort. And now, its our turn to live brave and strong.

11. Today was about surviving today. I’ll deal with everything else tomorrow. Or maybe the next day. Who knows, next week maybe?

In other news, I think my stomach is in my lungs now. #Methotrexate #LupusLife

12. Time moves so fast, so slowly. I need PT once again, Costochondritis and Pelvic Inflammatory Disease makes even walking a few metres incredibly painful. This on top of all the other #LupusLife manenos. I’m like that couple in the gazebo waiting for their little girl to come back, except I’m waiting for my health to come back. #Hope.

13. I live with pain. I bear pain in many forms. From constant inflammation. From new inflammation. From fibro neuropathy. From idiopathic headaches and migraines. From injections and procedures. My arm has been swollen and painful from an injection I received to stop an acute pain crisis. Ridiculous. I often have to undergo painful infusions and procedures in the hope of some kind of relief. Most of the time it doesn’t feel worthwhile but you try anyway. This is the life you live when your body is actively trying to kill you. You soldier on until the battle is over and the war is won. Whatever happens. #LupusAwareness

14. I have had to teach myself to be grateful for the small things, for the kind gifts, for the tiny blessings. Saying thank you to those who care for me, or simply keep me company. I say thank you to orderlies, nurses, doctors, bookshop assistants, ice cream palace girls… I say thank you at home, to mum for every little thing she does, and to Jo Jo for making sure I eat, take my meds, to Guillermo and Fluffy for making me smile, and for sloppy kisses. I say thank you every day for the gift of life. I feel that the beautiful things that come my way, however little, however few, are more than enough to offset the pain or discomfort I may have to live with while I battle #Lupus. So, THANK YOU.

15. A few weeks ago, my immune system tanked. On the one hand, I am still positive for ANA at a high titre which means docs still have to control that, on the other, I had septicemia which was not responding to drugs at first and my body was not producing the soldiers meant to help fight it. I’m exhausted from living with the infection for about 7/8 weeks, in and out of hospital, full day hospital visits, one scary emergency episode but finally today my blood came back negative for anaerobic cultures. Everything still hurts right now, and I’m still a long way from upside up. But we keep going, we keep thankful, I keep fighting. #Lupussucks #LupusAwareness

 

16. We live in interesting times, and there are probably more important things to think about just about now. But my hair is falling out and I’ll prob need to use my chemo cap again. Also, everything hurts. #Fibromyalgia #Lupus #WhatsNext

17. I keep thinking I’ll get used to new symptoms cropping up. I’m always praying for old symptoms not to come up again, but part of being in a #Lupus flare can be symptoms playing musical chairs. Now all I’m praying for is the strength to bear up with grace and never lose my hope in the face of constant physical pain, and both emotional and physical fatigue.

18. If there’s anything I am terrified of when it comes to being diagnosed with CNS Lupus is that it might or may already have led to symptoms such as Lupus Psychosis. I can deal with pain, kidney failure and all other symptoms related to Lupus. But this one scares me. How do you trust your own thinking, your perceptions, your world…?

19. Chilling with the dude post methotrexate.

20. I feel like I’ve been posting variations of ‘stop the shame’ with regards to mental illness since Chris Bennington got to the end.

Since it seems I have decided to take on the Internet’s, let me try. Not all physical illnesses are fixed by pharmaceuticals alone. It takes proper diagnosis, and then an actionable plan that doctor and patient work through together. (Yes, Serah Wanja, Amakove Wala, Kabugo, am I right? Psst – I know doctors!)

So when someone says depression is not something you can just pull yourself out of, they mean Depression is not just a sad little funk when things don’t go your way. Depression and many mental health disorders are actual illnesses caused by chemical and hormonal imbalances in the body. Some of the way they manifest is in prolonged sadness, inability to function, alcoholism, drug abuse, other behavioural issues. Even worse in my opinion is high functioning mental disorders where the person seems fine but is suffering mental anguish.

Yes, you need a proper diagnosis, from a mental health practitioner, and on some cases a psychiatrist who by the way, is a fully trained medical doctor capable of assessing your brain functions and chemical processes. (Lukoye W’Atwoli – I know doctors).

Then an actionable plan which may or may not include pharmaceutical intervention but definitely requires cognitive support and therapy.

So yes, that is what the lady meant when she said depression is not just a funk you can just wake up and shake off.

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Goals

My last post hinted that I’ve come to some kind of acceptance and contentment about my situation living with Lupus. This is not to say that because of my life with Lupus I no longer have goals, dreams, ideas… It might take me a little longer, and I might need a whole lot of help to actualise most of them, but I do have them.

I am rewatching this show Rosewood, about a Miami Medical Examiner who teams up with a Detective to solve crimes.

The Medical Examiner sort of represents the kind of health challenges that seem like unbeatable obstacles, a failing heart, compromised lungs, weak kidneys etc because of being born a preemie and a lifetime of a body that fails and betrays you. How do you survive this?

The Detective represents the kind of emotional worries that would leave a person psychologically crippled. After being abandoned by her father, this detective works hard to be a cop, finds a person she believes is the love of her life then one day he just drops dead. How do you survive this?

I’m still rewatching the parts where the ME and the detective are getting to know one another. It sounds a lot like my brain fighting with my heart (not the physical one, the other one for feeling).

The ME, despite his physical challenges, wakes up every morning, runs on the beach and tries to enjoy the sunrise. His body often kicks his ass. Pulmonary hypertension causes tinnitus and muscle cramps. But he doesn’t let it faze him. He is stubborn though. Although he does eventually hook up with a cardiologist (quite literally), at first he insists on treating himself, running diagnostics and self prescribing which is so bad on so many levels.

Lady Detective has about the same problems except on an emotional level. Eventually, her anger management problems send her to rehab which turns out to be a disaster, but the kinks finally work themselves out. She attempts to date someone, but eventually he leaves her for a Doctors without Borders job in Kenya.

You get my drift. Things go wrong. The things you expect to go wrong go wrong. The things you hope will work out will go wrong. But that isn’t to say some things won’t work out. Some things will be amazing!

When Doc’s mother puts him on the spot when he removes himself off the transplant list because he feels it will be a waste of a heart that will probably be rejected by his body because of his peculiar circumstances, Doc says something to the effect of: You work with what you have, mum. You do your best, minimise the risks, enjoy the blessings and what will be will be.

Lady Detective gets somewhat similar advice about her emotional state.

I can vaguely recall what happens ahead on the show, so I’m not going to pretend that Rosewood is this great artistic metaphor for life. Its just the reason I pushed myself to do some stretches today even though it hurt like hell, and I hope to work towards getting my strength back after a particularly bad Lupus flare. That’s the goal I’m working towards right now.

Goals: Jessamyn Stanley