My Autoimmune Story – Elwyn Chebet

It all started with my complexion suddenly getting lighter, then swollen and painful joints. Later, I started losing hair and weight. These all came with insomnia and lack of appetite.

First diagnosis in 2015 was rheumatoid arthritis. In 2017, I got to get the correct diagnosis. This was after I had lost use of my muscles and balance. I had to be carried and had to always have someone with me. The diagnosis in 2017 was SLE, Sceleroderma and Polymyositis.

I was started on Immunosuppressants, Steroids, Calcium supplements, Ginsomin and antacids. I have also been undergoing physiotherapy.

As years have gone by I have had an overlap with the disorders. I developed fibromyalgia and Raynaud’s syndrome. I have had to have three x-rays,a CT scan and an MRI.

Having Lupus changed my social life. Along the way I lost friends. At first I kept to myself. I couldn’t bring myself to believe that everything had changed. I couldn’t model anymore. I had deferred my University studies. I eventually spiralled into depression. I stopped using my phone. I couldn’t watch movies and I didn’t read anymore.

I later got to a point where I started accepting myself. I learnt that as much as I had a chronic illness I could still live a normal life. I have learnt to live with my new normal. I have learnt that I govern my happiness.

I sometimes wish I could go on vacation or maybe a road trip. This always needs a lot of planning. Making sure my body isn’t flaring.

I have an amazing support system. My family being my greatest. My other family SCLAD support group are also incredible. Then I also have friends who treat me well. Not like am a fragile invalid. They care and love me for who I am.

My journey with autoimmune disorders has been hard, steep and tough, but I have learnt to live my best life again.

Do you have a story you’d like to share? Please leave as a comment and we’ll contact you. In the meantime, SCLAD is counting on your donation to keep supporting persons living with autoimmune disorders in Kenya. Use Mpesa Paybill 891300 Account SCLAD, or Mchanga https://secure.changa.co.ke/myweb/share/37717

My Autoimmune Story – Anne Lilian

My name is Anne Lilian, I’m battling Scleroderma and several other auto-immune disorders (Lupus, sjogren and PBC).

Anne Lilian

I got diagnosed with Scleroderma in 2015, two years after the Lupus diagnosis. My first symptoms were a sudden change in my skin and change in bowel habits and swallowing. I remember going to my first GI doctor who said it was all in my head.

After the diagnosis, I had serious malabsobtion and bacteria overgrowth in my stomach. I was given about 6 months to live at some point. I kept on fighting. My family walked with me thru that low moment in my life.

Living with Scleroderma has brought about various complications in my body and organs as well. To start with choking while I eat, scar tissues in my lungs, esophageal dysfunction and gastroparesis, digital ulcers and multiple episodes of pleurisy… this has made me adopt to a lifestyle I never signed for. My mouth has significantly shrunk and my teeth have started breaking… my lips are significantly non existent.

I fight every day because Warriors don’t quit. I live one day at a time with renewed hope and faith that one day we shall get a cure. Sometimes, this journey is complicated by various things but Faith and Hope keeps it worthwhile. It’s 5 years now since the diagnosis and still fighting.

#KnowScleroderma #lupusawareness #knowlupus #scladawareness #TheLfactor #AutoimmuneAwareness

Do you have a story you’d like to share? Please leave as a comment and we’ll contact you. In the meantime, SCLAD is counting on your donation to keep supporting persons living with autoimmune disorders in Kenya. Use Mpesa Paybill 891300 Account SCLAD, or Mchanga https://secure.changa.co.ke/myweb/share/37717

2020 #LupusAwareness Concert with Zouk Soul & Lahani at Captain’s Terrace

Finally! This comes a little late in the year than usual but now I’m happy to announce that Zouk Soul has partnered with Lahani to host the 2020 edition of the SheBlossoms #LupusAwareness Concert at Captain’s Terrace on the 13th of December 2020!

This event is in support of the ongoing campaign by SCLAD & She Blossoms, to raise funds to support persons living with autoimmune disorders. (Mpesa Paybill: 891300 Account: SCLAD or on Mchanga https://t.co/F2C5ve4ssO)

Did you know that 10% of persons living with Lupus are male? This special edition of Zouk Soul /She Blossoms features an all male line-up, a first for She Blossoms.

Come learn about Autoimmune disorders, while being serenaded by a talented pool of gentlemen. Details in poster. All safety protocols will be ensured and observed.

My Autoimmune Story – Eunice Wacera

My name is Eunice Wacera, 42 years of age and this is my story.

I was diagnosed with Juvenile Rheumatoid Arthritis in August 1988. I was 10 at that time. Two years later, another diagnosis unearthed Systemic Lupus Erythematosus or, simply, lupus. Paediatricians at the Kenyatta National Hospital (KNH) were caring for me at that time.

I suffer from an autoimmune disorder. Consultant physician Philip Simani, who has a clinic at Prof Nelson Awori Centre, met me at KNH in the 90s. By that time I think they were in the process of establishing a rheumatology clinic at the hospital. I was one of their earliest patients by then.

My immune system is supposed to defend me from diseases and bacteria, but Instead of defending me, my body turns against me. My journey to the right diagnosis was bumpy. I was misdiagnosed with malaria, rheumatoid fever and scabies. A skin biopsy was also done and nothing was found. This really traumatized me since nothing came out clear. It really bothered my dad who was and still my strong support system. He was really shocked when he learned that I could no longer go to school, since it began as pain in one of my ankles and later developed into both with swelling, so this limited my movements.

We kept moving from hospital to hospital in search of that elusive diagnosis. Our time, energy, emotional and financial resources were just sapped.My family was relieved to finally discover what was ailing me. In 1991, my dad went to the UK for studies. This was a springboard for me to travel there for further treatment. I also attended school there for 18 months.

In 2016, I was diagnosed with bronchiectasis, a chronic lung condition. These disorders really took a toll on me, since there was a time I almost got crippled. Further complications set in due to either sitting or lying down for too long. My hip required replacement. The surgery was performed in Arusha, Tanzania. About a year later, my hip required an adjustment due to the implants having developed some faults.

India was my next destination. While in India, I developed lung infections and my left lung collapsed just before I had the revision hip replacement. The surgery had to be postponed to allow me to recover, but thank God the surgery was successful.

My doctor always insist on the importance of taking protective measures especially during the pandemic. Patients who have reduced immunity or are using medications that suppress their immunity may be more prone to developing more severe viral infections. So you’ll find that we hardly allow visitors in our home. My young brother runs some errands for me such as obtaining medication from the chemist.

As warriors we live to fight and see another day despite all the challenges we go through, but God hasn’t brought us this far to leave us. We are warriors and it’s the duty of warriors to fight superior odds.

Do you have a story you’d like to share? Please leave as a comment and we’ll contact you. In the meantime, SCLAD is counting on your donation to keep supporting persons living with autoimmune disorders in Kenya. Use Mpesa Paybill 891300 Account SCLAD, or Mchanga https://secure.changa.co.ke/myweb/share/37717

Your Illness Does Not Diminish Your Worth!

I tried to hide my illness when it started to develop when I was about 18. I wanted to be the cool, smart, high achieving androgynous best-selling author. That was the nutshell. And when illness constantly interfered, I got angry, embarrassed, a little unbalanced.

Only the closest of my friends, my boss and of course, my parents knew about the migraines, the chronic fatigue and fibromyalgia. My diagnosis came in phases, and I felt so deeply sad and embarrassed with each limitation that came.

Hyperprolactinemia, caused by pin head tumours on my pituitiary gland, came with migraines and lactation. As in, me, tiny boobs, no baby Juliet was dripping breast milk all over the place. If I got angry, had a laugh, talked to my crush, anything, it would trigger squirts of milk from my boobs. I had to wear those mama bras for a while.

Then came Cushing’s Disease triggered by corticosteroids to control autoimmune activity. Uncontrollable weight gain. The shape of my face changed. I developed a hump. At one time I was dripping cerebral spinal fluid from my nose due to intracranial pressure.

A huge turning point career-wise, came when I developed a series of opportunistic infections. A most severe chest infection closely followed by a kidney infection that turned to septicemia. I didn’t think I was going to make it out of this one. At the time, my kidneys were injured but not failing. The pain was incredible. The loneliness even worse.

When I started to recover, I called my boss to explain what was going and that I might not be able to continue working. Instead of letting me go, she sent me a new laptop and cash for internet bundles and instructed me to handle my usual tasks from home but only what I could. Of course, I did way more than was required. And I loved it! Seven whole years of writing, editing and department support, working incredibly hard from the safety of my home, sometimes even from my bed or hospital bed.

I still did not have a diagnosis at this time. One doctor said this, the other said liver damage. I had/still have type 2 right ventricular dysfunction. Some doctor called it heart failure. We were scared. So off to India we went. Best decision.

The doctors in India explained that I have Undifferentiated Connective Tissue Disease which meant that I had some, but not all features of different autoimmune diseases. I have the basic symptoms that cut across all autoimmune cases; headaches, fatigue, sensitivity to ultra violet rays, general low grade fever and opportunistic infections.

I also have GERD and thickening skin from Scleroderma, Extremely painful muscle inflammation and weakness from Myositis, dry and inflamed eyes from Sjorgens, organ & skin inflammation from Lupus, porous bones from corticosteroids, Raynauds Syndrome which gets incredibly painful and and can even cause wounds on toes and fingers (digital vasculitis) when there is severe cold.

I also live with mental health challenges from having to deal with this debilitating illness. Sometimes the mental health issues are brought on as side effects of medications I take. Right this moment, I’m suffering severe anxiety attacks which include hallucinations caused by one of the drugs that I have to take to save another part of my body.

I am now managed by several doctors here in Nairobi which is a whole adventure in itself that I must write about sometime.

I still have vestiges of shame, sadness and often frustration because this is not how I thought my life would be at this point. So I am working really hard to accept myself, adjust my goals and live life joyfully.

One day, a beloved friend asked me: don’t you think sharing what you go through can help someone who is suffering too by helping them see they are not alone, and / or helping their people understand them better? I thought about it quite hard, even talked to a few Lupus and Autoimmune bloggers I knew from the the US and UK.

The advice was good. I had to have it clear what I wanted, how the media I used would help me reach my goals, but most importantly, I had to remember that I was still living with chronic illness so it was important to rest, sometimes rest even more when a flare was coming on.

A large part of the commitment I made to raising Lupus and Autoimmune Awareness was driven by a desire to demystify Lupus and autoimmune disease from a layman’s point of view in the hope that increased visibility and awareness might help with public health policies, patient care, and patient agency and so on while we still live in this system of things.

In the meantime, we do what we can, what we want to cope, survive and be our best while living with these illnesses.

And as Barbara Wanjala has declared on her Facebook Wall let one’s worth not be diminished by their diagnosis. If you choose to live your illness privately, it’s a personal choice. Or you can live it loudly, just for yourself or to shine a guiding light for those that follow. You have absolutely no obligation to perform your illness for anyone.

May you have love, beauty, kindness, grace, peace, and all the warm hugs from those you love and who love you. Hugs after corona, of course.

💞💞💞💞💞

I chatter a lot more about Lupus, my dog Guillermo and cat Mr.Finnegan on Facebook or Twitter.

Lupus Awareness Month

The first time I heard about Lupus, was when a doctor mentioned it in passing after he’d ordered some tests and they’d come back positive for anti-Double Stranded DNA. I’d been through a harrowing chest infection followed by a kidney infection. With my history of severe allergies and migraines, the doctor must have decided to give it a check. But he didn’t discuss his suspicions with me, and even when the test results came back indicating autoimmune disease, he somewhat dismissed it, and so did I.

That was in 2009.

I’m a writer. I love to research. So yes, I did research Lupus. But the combination of the very scary descriptions and the indications on prognosis made me dismiss Lupus even more. Like my cats, I went with, if I can’t see it, it isn’t there.

But it was there. I Went through a period when the symptoms were there but I could cope, go to work, see people, do things 🙂

In 2012, I went through a stressful period when my adrenal system started to act up. The symptoms abated, and came back a few times. I was in the care of an endocrinologist at the time. Sometimes it got so bad I doubted my sanity, even saw a psychiatrist who treated me with mood stabilizers for a while before recommending strongly that I see a rheumatologist.

I was still not in treatment for Lupus. I kept going, trying to live my life, do my job, love my people. My symptoms were treated when they got too crazy.

Finally, yet another doctor saw me in an emergency at St. Mulumba’s Hospital in Thika. I was in adrenal crisis, severely inflamed, nearly blind, in unbelievable pain. That led to the buckle down when I definitely had to see a rheumatologist. By then, I had also developed Cushing’s Syndrome, Left Ventricular Dysfunction with arrhythmia, Glucose Intolerance, hypothyroidism, indications of Metabolic Disease and Polycystic Ovarian disease.

It has been a journey of pain, fear, and strangely beauty and empowerment once I overcame the fear from the diagnosis.

At one point I was incredibly furious at a doctor who felt that I needed to ‘understand’ that I really had less than a year to live and to make my peace with it. I walked around feeling angry at ‘the doctor’, and even a second opinion discounting that first prognosis didn’t help fix my anger.

In a way, that anger sort of tripped me into the next phase. It looks like denial, but I decided to take charge of my life. I changed my diet with the aim of reducing inflammation,  started physiotherapy, which was hell at first, pushed myself into a regular exercise routine, made the decision to be consciously optimistic.

In 2016, I traveled to India where I underwent rigorous testing to see what I was dealing with. Finally, I was diagnosed with Undifferentiated Connective Tissue Disease.

It hasn’t been easy keeping up with my symptoms, the different medications, doctors’ appointments, numerous blood and imaging tests that have to be repeated often to monitor the disease, side effects from medication and often opportunistic illnesses that develop as a result of being immunocompromised.

I have to live in this autoimmune world. But I’ve made a decision to live on my terms. Nothing will come between me and the beauty of life and love.

One of the things that make it possible for me to keep going, is the commitment and determination to raise awareness of Lupus and the challenges that people living with autoimmune disease have to face everyday.

This is why the months of May and October are so important to me. It is the one time I can join the rest of the world in increasing awareness about Lupus. I have been doing this with the support of friends, loved ones and the Sheblossoms community.

World Lupus Day falls on May 10 of every year. World Lupus Day serves to rally lupus organizations and people affected by the disease around the world for a common purpose of securing greater attention and resources to end the suffering caused by this disabling and potentially fatal autoimmune disease. October events planned the UK and other countries that mirror #LupusAwareness campaigns, help to amplify World Lupus Day.

In 2020, the spread of the Corona Virus pandemic throughout the world means we cannot do World Lupus Day as we have before. Traditionally, Sheblossoms has organised a live Lupus Awareness concert along with other talks, presentations and meetings during the month.

Sheblossoms is always working on #LupusAwareness on Facebook and on Twitter

If you have a story to share with the Kenyan Lupus community, as a Lupus patient or caregiver, please feel free to drop me a line in the comments or on the social media pages above. If you would like to join a WhatsApp support group. I will be happy to connect you.

Please Stay Safe. Wash Your hands. Don’t touch your face. Wear your mask. Wash your hands. Stay Appropriately Distant. Wash your hands! Stay COVID19 free! Let’s Fight Lupus together!

Help Tasha Go Home!

This is a personal appeal to friends of this blog and anyone who stops by here. I am asking that we support this amazing fighter and #LupusWarrior, Natasha Kioko  in any way possible. Nothing will be too little.

Natasha with her dad, Ricky Kioko

Following difficult negotiations with the insurance provider, Tasha and her family have been left with a KES 2.5m bill to pay to the Nairobi Hospital.

She’s been undergoing dialysis due to Lupus related Kidney failure, but recently developed severe headaches which turned out to be due to a clot in the brain. An emergency surgery was conducted & thus the bill. Let’s assist Tasha and her family cover the bill so she can go home where she will be safer with this #COVID19 situation.

Send what you can to her dad Ricky Kioko’s Mpesa at 0715179386.

The best we can do during tough times, is to support and protect each other until we can get through it!

Thank you so much!

Juliet Maruru.

For Me, a COVID19 Infection is a Death Sentence

I must admit to feeling a sliver of fear. No, I am not afraid of death. However, the process of dying worries me.

Last year about this time, my mum and I contracted a winter flu while we were in New Delhi. When the test results finally came in we were informed that we had contracted a weaker version of H1N1. It was horrid. It was made worse by my autoimmune struggles.

I imagine that COVID19 is a lot worse, at least judging from the descriptions those infected are giving. I imagine being afflicted, having difficulty breathing, being in pain and … the fever. I hate fevers. Flu fevers are just the worst.

So yeah, I am just a little scared. Which is why I’m being extra cautious. I want to minimise the chances that I will contract COVID19. I want to make sure that the people I care about don’t have to live through (or die from) a COVID19 infection.

Wash hands diligently and regularly.
Clean and sanitise surfaces in the home.
Avoid unnecessary contact with people.
If you think you might be infected, please isolate yourself and minimise the chances that you will infect someone else.

If you need to be convinced further on why you should do everything to avoid infecting others, have a look at this article. 👉 They’re living with an invisible illness. Social distancing will save their lives.

Optimism…

A few years ago, I committed to sharing my experiences living with Lupus in order to raise #LupusAwareness.

I’ve told my story here: From being told that it was all in my head, being referred to psychiatrists, being told I had chronic fatigue or myalgic encephalomyelitis, then being told it was fibromyalgia, to finally being told I had UCTD, which is a cool way to say: We are not sure yet which autoimmune disease you have because your markers are not complete, but it looks like Lupus, walks like Myositis and quacks like Scleroderma.

I’ve talked about my symptoms, the ups and downs of living with what is generally treated as Lupus by my doctors, looking for clearer diagnoses, and just surviving a disease that batters me physically, emotionally and financially. I can’t even begin to describe how draining this is for the people who love and care for me.

I’ve been admitted into hospital 5 times in the last 6 months. It is exhausting, expensive, and often quite frustrating. As I write this, I am in hospital all over again.

I am struggling to remain optimistic and cheerful. The humor doesn’t show up quickly at the moment. I can only hope that in a few weeks time, it will come back to me so I can continue being some kind of lighthouse for those negotiating the dark and turbulent seas of living with chronic illness.

Until then, I wish you all strength, courage, hope and love.

Juliet

Needle Day… or trigger fear & panic day

I’ve  mentioned medical PTSD here before. It is different for everyone and can show up as irrational fear and anxiety during medical procedures to nightmares and depression. (See about 👉 Medical PTSD )

I get easily triggered by the sight of hypodermic needles. Chronic pain, night sweats, random nausea, fevers and whatever Lupus throws my way won’t faze me. But the needles for drawing blood or for injections / infusions will make me consider lying down on the floor and sobbing like a 2 year old whose mummy said no to supermarket sweets. I’ll sweat, experience a racing heartbeat and sometimes I disappear into a panic attack, hyperventilating uncontrollably.

Usually, when my body is behaving properly, I only have to see my doctor once a month. The week before my rheumatologist’s appointment, I’ll be at the labs getting blood drawn for monthly tests. And this is where I consider giving up.

My veins are difficult. It’s not that they can’t be found. No, it’s that they absolutely refuse to be pricked. So before the medics can find one that will cooperate, I’ll have been pricked several times. It usually takes half an hour to 90 minutes to fix a line.

The worst that ever was was when I was hospitalised a few weeks ago. It took 5 different medics and finally an anesthesiologist to fix a line. My medication was delayed for 6 hours because of this. By the time the anesthesiologist finally fixed the line, tears, snot and sweat were running down my face. I was exhausted and angry with no one in particular.

The next day, I felt like I’d been run down by a 26 wheeler. I had the bruises to show for it.

Anyway, in case you are wondering what I will be up to for the rest of the week: bring me supermarket sweets.

But please, feel free to have a good day!

#ThisIsLupus

Have We Been Here Too Long?

The doctor’s new office assistant looks flustered. She is juggling making appointments, pulling out patients’ files, with a myriad other office things she has to do. There’s usually two of them keeping everything going in this busy Rheumatology clinic. The other assistant, who has worked here longer, must have the day off.

The waiting room is the average Nairobi specialist doctor’s waiting room, that fits the assistants’ semi-circle table on one side and about 14 seats for waiting patients on the other. The seats are the nice kind, soft enough with decent back support. Everyone is close enough to hear what the Ms. Assistant says to whoever stops at the desk. I listen in on her shamelessly. Another waiting patient reads, and yet another stares at a wall. The rest either talk to each other or fiddle with their phones.

There’s a lull, an expansive silence that makes those who weren’t paying attention look towards the Ms. Assistant’s desk. A woman has walked in, bringing with her a warm flowery fragrance. She looks elegant, in her long maxi dress which features flowers of varying hues of red. Maybe it’s my synesthesia making me imagine that she carries a scent with flowery notes.

I watch her dig into her Queen Elizabeth handbag and bring out her phone. Then she asks for an appointment sometime next week. Wednesday, the 22nd, at10am. The Ms. New Assistant nods and turns to type on her computer.

“The doctor has lectures on Wednesday morning.”

Someone has forgotten to use their innie voice. I sigh with relief that it wasn’t me this time. We are all looking at Mr. Stares-at-the-wall now. He smiles with a bit of embarrassment.

“What?” That’s the lost Ms. New Assistant’s voice as she scrambles for notes that she must have been given by the other assistant. She finds the right post-it where it was hiding on the edge of her computer screen. She sighs with a bit of shame, “Yeah, on Wednesday the doctor won’t be in until 3PM.”

Ms. Flowers doesn’t look happy. She looks at her phone then asks, “Thursday? But I can only see him at 9am.”

“He usually has hospital rounds till 10am.” This time it’s a lady whose been talking to her friend in hushed tones the entire hour we’ve been waiting. Multitasker? She definitely was listening in.

“Yeah, that’s true.” That’s all the Ms. New Assistant can say for herself. This time, Ms. Flowers doesn’t bother looking at the her. She asks the waiting room, “What about Friday?”

“After 10am.” That is a unison of voices. Ms. Flowers nods, and goes back to her phone. She manages to work out her schedule and gets her appointment. We exchange knowing looks. No one will tell her that it will be first in first served when she comes in on Tuesday after 10am.

More importantly, no one talked about how sad it is for anyone to have spent so much time in a doctor’s office or hospital that they knew the doctor’s schedule by heart.

Dear Diary… Sometimes, it is just about my pets

19th November 2019: I am so very terrified about tomorrow. I’ve been needing to have biopsies done, which have been postponed because Shingles, then Pyelonephritis. So roughly about 2 months of postponing but I have to go in tomorrow. Bar any weird developments biopsies will be done. Early sleep means more time to toss and turn. That’s #Lupus.

26th November 2019: I feel like a huge percentage of living with a serious chronic illness is anticipating trouble, then scrambling to mitigate it. You may always be on the lookout, but complications will still catch you unaware. Anyway, my biopsy site is healing. I think the stitches are ugly. But it is healing much faster than the one I had done in India early this year. The first one on my right thigh was to check on effect of Myositis in the muscle. The recent one was to check on a nodule growing in my left thigh. There was a third biopsy which was a needle biopsy. I’m hoping that the recent checks comeback normal because I am tired. I’d like a few weeks without drama. But I don’t have much of a say. You guys, you have no idea how I am aching for that time when I will not say I am sick. May it be, may it be, but only according to HIS will.

27th November 2019: It’s taken my boy 7.5 years to figure it out, but Guillermo (pupper) finally knows how to open doors. There shall be no peace or quiet, no privacy or locked doors, in this land. Finnigan (kitteh) already knew how to open doors when six months old. But now that his partner in crime knows how to, there will only be freedom, victory, unimaginable treasures, and of course, food upon wish for both Dog and Cat!💥🔥✨💫💦💯

Who ate your pumpkin slice, momma?

 

3rd December 2019: Guillermo still puppy dog whines when I get home after a long day with the needle people. Like he is so happy I’m home that it hurts. He just makes my world so much better!

8th December 2019: The usual thing is for persons with chronic illness, cancer, Lupus etc to be met with a barrage of ‘It is well’ and ‘You are already healed’. I’ve struggled over the years to handle these comments with respect, but the feelings inside hurt. People imagine they can negate your suffering with overt optism. This article explains it so well. I am however grateful that my mother acknowledges my pain even as she encourages me to be brave and strong.

11th December 2019: The end of a Lupus Warrior’s battle is all sorts of emotions for the Lupus Community. Relief that there is no more pain for that one. Unease at the knowledge that it could very easily have been you. Sending love and prayers to all the loved ones of Wanja Kamau. We keep walking on. 💔

13th December 2019: Usually, it is quite hard to get Guillermo’s collar on him. He reacts the same way he does when he sees the vet’s syringe. In spite of my instinct to sympathise, seeing as I have my own medical PTSD to refer to, I’ve always suspected Guillermo’s is just an act. I tried to suggest this to mum and she would hear none of it. So it remains that I am the only one in the house + his walker who can get him in or out of the collar and leash. As usual, yesterday, my mum struggled with G and the collar cos I’ve been too unwell to do it. Then G heard his walker’s voice at the door and promptly sat down and stopped wriggling so mum could collar him. Once he was collared, off he shot to answer the door. It’s just a naughty pup.

14th December 2019: There’s the regular fibro pain you learn to live with every day, every minute. And then there’s the special I call ‘pain crisis’. I was so happy when I found a doctor who understands what a ‘pain crisis’ is, and believes it when I say I can’t stand it anymore. My mum has always believed me and been on my side. I hope that this article gets you just a bit closer to understanding it.

16th December 2019: It’s going to be another long week. Kidney infection persisting. Admitted into hospital again. I am tired. My people are exhausted. We leave it in Jehovah’s hands now.

18th December 2019: How to negotiate costs for long term care. I have to figure out how to go about 14 days of medication, 3 times a day, mandatory infusion (tablets not possible), plus kidney function and blood pressure checks every day. All this without remaining admitted in the hospital, because of financial reasons. Did I say I was tired? Imagine the fatigue my folks are feeling through this one. Gratitude always.

27th December 2019: Watch when your nurse / medic is preparing your infusions, injections, IV line. Dont allow them to do the preparations in some other room, then come hook you up. Professional nurses / medics won’t need to be told about this. Keep an eye on your medicine labels. Ask what is being administered, and listen. If it doesn’t sound like what your doctor prescribed, ask, point it out. Being alert when this is happening can help make sure you get the right medication at the right doses. It will also help you identify which medications make you feel a certain way as it is being administered.

29th December 2019: The other love of my life thinks I’m too dramatic. I adore his precious little face. El Finnigan.

My Boy Finnigan

 

31st December 2019: I don’t have tributes and eloquent confessions of things I have learnt in 2019, or goals for 2020. I have been given more than enough love and undeserved kindness. I have only one goal; to remain strong and faithful no matter what it is that I will have to endure.

3rd January 2020: In the last 12 weeks, I’ve cried so many times. It’s been like paying for all those years I pretended to be no tears hardcore. I’ve cried when they couldn’t start a line and they had to prick me so many times. I cried when I couldnt stop puking after each infusion. I cried when the pain just wouldn’t let up for hours on end. I cried when I fell into the self pity hole. I cried because I couldnt get myself to stop crying. I cried when someone explained why feeling shame for being in pain wasn’t right. I cried when I cried anyway.

 

5th January 2020: I sat outside today. My mum and Guillermo looked like flowers in the garden.

My Mum with Guillermo

 

6th January 2020: After 13 insane weeks, I am finally free of the Multi Drug Resistant Bacterias. That was rough. But.. I’m not alone, I never was.