Lupus & Friends

Lupus patients often suffer from the effects of the disease as well as side effects from the medications. For example, a drug meant to stop autoimmune activity and damage to organs will also come with side effects such as nausea, headaches, swollen face and feet as well as severe fatigue.

In my case, the list of side effects is long but the one I am most anxious about is AVN. Avascular necrosis of bone (AVN) is a well known complication in patients with systemic lupus erythematosus (SLE). AVN in simple terms is bone death which increases the risk of fractures and joint destruction. It can be caused by the action of antiphospholipid or anticardiolipin anti bodies limiting blood supply to the bone resulting in bone death. Compromised blood supply to the bones can also be caused by long term corticosteroid use.

AVN can be managed with medications to strengthen the bones. If the disease has progressed too far it can require bone grafts and/or joint replacements. Fortunately for me, though very painful, my AVN was caught in early stages.

A huge part of my care is assessing whether the side effects of  medications are outweighed by the good effects. It is also constantly monitoring disease action as well as the effects of side effects. This means tests, more tests and even more tests alongside imaging scans every few months.

Even with constant monitoring some things fall through the cracks. This could be because the symptoms do not immediately show up or because another condition is commanding more attention. This is why it is very important for a patient to be very aware of their own body.

My loudest complain has been what was described as complex regional pain syndrome (CRPS) because it presented as such. However, it turns out that my severe and chronic pain is a result of bone death and nerves affected by AVN.

Even here in India, I might still not have been diagnosed with AVN because the bone infarcts were not showing up on the dexa scans. My AVN was diagnosed because bone infarcts showed up in an MRI that was prescribed to assess another condition.

Living with autoimmune disease and related complications means constantly being aware of your condition, new symptoms, changes in your body function and various reactions to medication as well as making sure you eat properly and do not expose your body to unnecessary complications. You are your first carer, doctors and nurses come later.

It’s a job, 24/7/365.

#LupusAwareness
#Myositis
#AVN

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Relationships & Chronic Illness

Most people with chronic illness know how much relationships change when it becomes obvious the illness is here to stay. I personally think that illness just brings out the truth. You get to know your real friends, your true family.

I became acutely aware of my reduced value as a marriage or life partner because my illness is intrusive and debilitating. The good thing is that I didn’t have a high premium on getting married, so this fact did not hurt me much. That is not to say I didn’t feel the sting when a man I adored stepped back all the way because it was obvious I had challenges. But it wasn’t a ‘my life is over’ kind of thing.

What hurt extremely is the loss of friends and relatives who I had just assumed would never leave me alone. Yes, my illness is a financial and emotional burden, and so I imagine some stay away so they don’t have to be in a position that made them have to contribute to my care. I understand that. In particular, there are certain relatives I seem to have expected more from, but who couldn’t take accepting and coping with my illness on in addition to whatever challenges their own lives had. It hurts, but I understand it.

Even so, illness showed me the truth about other people who have become closer than family at a time of need. Some feel the need to contribute financially to keeping me alive, and I appreciate it greatly. But I think I would love and adore them just for being there even if they couldn’t send money.

What i value most is having someone care enough to check on me often, and say encouraging words, or vex me with philosophical debates to distract me, or even just stop by for nothing but a kind hug, or like little Zohra  and Darryl who organise my room and for whom I feel the need to venture out and look for books suitable for 12/13 year olds, and way too mature Sean and Mya who went out of their way to find a gift that let me know they appreciate my love for cats, or Deepak who loves and cares for my mother, supporting her and me beyond the call of duty, everyone who is kind and inspires me to show kindness and generousity… Those people mean the entire world to me. I am thankful every single day that they choose to love me.

Knowing how lonely illness can be, and how I have been shielded from that loneliness by my amazing spiritual family, makes me try very very hard to be kind and generous to people as far as I possibly can be. I pray everyday for love, joy, peace, patience, kindness, goodness, faith, wildness and self-control, so I can be as much of a blessing as others have been to me.

#Autoimmune
#Lupus

How My Work Relates to My Chronic Illness

I worked from the age of 16. I worked right through some of the worst parts of being chronically ill, when I didn’t know what was wrong with me, when I knew something was wrong but doctors didn’t believe me, when the doctors could tell something was wrong but couldn’t agree on what was wrong. I worked until I couldn’t work anymore because on the night of September 20 2015, I had a cardiac event that shifted the direction of my journey with chronic illness.

The problems with my heart forced me to really take time out and focus on getting an actual diagnosis, and getting started on a healthcare plan. I had to travel from my home in Kenya all the way to New Delhi, India to get a diagnosis of Lupus crossover syndrome with Scleroderma, Sjögren’s, Fibromyalgia and Raynaud’s.

Once I started getting care, I started feeling better so in a few months, I tried to get back to work. The job I went back to involved planning events for writers and artists and an annual cultural festival in Nairobi. It was high stress, long hours and too much contact with too many people. 6 months in, I crashed into a major autoimmune flare.

I held on though, like I had before. I wanted to be financially independent. But it was more than that. I drew a lot of confidence and personal identity from being able to interact with creatives, organising events that empowered them, just being in this world. This was my world. As a writer, I felt that I could feed my creative energy off my work interactions.

But my job was killing me. I was more inflamed than before. I was in more pain. My body was falling apart as my immune system continued to attack my own organs, tissue and cells.

It took another hospitalisation for septicemia to slow me down. And I really slowed down. Right down to a halt.

For the first time, chronic illness stopped me from working and earning. Within a year, I ran out of savings and insurance. A different kind of high stress kicked in. The stress from being a dependant and worrying that you were going to become a burden to your parents. Every time the bills come in, every time I look at my hospital and medication receipts, I feel a cold, hard knot in my throat.

A friend recently said that Kenyans are just “one life threatening disease from total financial ruin.” 

I am there. I don’t know what will happen to me next with regards to my health. I don’t know if I’ll ever be able to go back to formal employment again. It has taken a whole lot of honest thinking, rethinking and deep breathing for me to accept my situation,and to begin detangling my identity and contentment from my work situation. I’ve only just begun the work. Only just.

It helps that I’ve been volunteering my time as a Lupus Awareness Advocate, and writing and editing freelance. I still have to be careful not to let this overrun my emotional state again. Finding emotional and mental balance when you are chronically ill is always hard. It is also a process that you have to keep going constantly.

Hopefully I can.

5 Things You Should Know if You Meet Me on One of the “Good Days”

A few weeks ago, I invited our local Lupus Support Group members over to my house for lunch and an afternoon together. I had doubts about being able to do all the cooking and organising so I asked a lady who helps people organise food for events. She’s a little more than asking cousin Judy to help, but a lot less than paying a caterer to do the job. Let’s call her Mama Lucy.

So Mama Lucy is at my house early morning and we generally work together to get the food ready for my guests. In the course of the work, we talk about me, Lupus and chronic illness. The thing Mama Lucy can’t get over is how great I look, how ‘healthy’ I seem. Her shock doubles when the group members arrive. I’ve told her by then without identifying anyone or sharing anyone’s medical history inappropriately that many of my guests have been in an out of hospital for years, some are undergoing dialysis, others are hoping on organ transplants and most live with every day pain. She can’t believe how great my guests look, some even come driving themselves which doesn’t compute with her mental image of the sickly helpless person who needs help getting a spoon to their mouth.

I explained to Mama Lucy that there are in fact days when I can’t lift a spoon to my mouth, and that every case of chronic illness is very different even when the diagnosis is the same. I told her that some persons with chronic illness need day to day help with life activities, while some don’t. Some have adjusted their goals so they can work with schedules that their bodies can handle or even work from home, and some can keep up with 9-5 schedules.

It occurred to me Mama Lucy’s confusion is pretty much every one’s confusion when they see me and they have to reconcile both my physique and general personality to the fact that I live with chronic illness. So here are a few more things I’d like to let Mama Lucy and everyone dealing with this confusion know.

1. I will often look fine, or sound fine, sometimes even when I am in pain. Many people with chronic illness often do not have outward signs of illness such as wasting away, or wounds. That is why they are called ‘Invisible Illnesses’ because the effects are on the inside. I am currently struggling with ventricular dysfunction and pulmonary hypertension as a result of autoimmune disease. This is in addition to general inflammation from Lupus, GERD, Raynaud’s, Fibromyalgia and symptoms of Sjögren’s. I am often in and out of hospital. I, however, am not wasting away, and will often be seen laughing even when I’m hooked up to an IV line.

2. I will often be tired, sometimes too tired to engage in normal conversations and day to day activities. This might seem like a contradiction of point No. 1 but it is not. I will try my best to do what I need to do, but on the inside, my body is fighting hard. This constant battle with inflammation and pain, as well as other symptoms that come and go leave me exhausted. I prefer texts to calls because I can then gather my fatigued mind to get together a response. I will likely never be able to do spontaneous plans. And I will go home early from that dinner.

3. I am interested in you and care deeply about you even though I am unable to keep up with you. I have canceled on people, some more than once either because a sudden run of severe diarrhea or pulmonary hypertension started up the night before our planned thing. After a while, people give up on me. They stop inviting me to things, or coming around, and some even have stopped answering my texts. I just wish they knew that I still care, and would love to know how they are doing. But its also okay if they are not in a place that can accommodate a person living with my challenges. So its all good, really.

4. Not everyone is comfortable talking about the details of their medical conditions. Because I chose to live my life as a Lupus Awareness Advocate, I often talk about my symptoms to help people understand what Lupus and chronic illness looks like. However, some people need their privacy and may not be comfortable sharing with you. If your friend or family member feels that way, please respect their dignity. That doesn’t mean you should back away. Make sure they know you care, and would love to be there for them. It could make all the difference.

I know this one is hard because often people with chronic illness need help in one way or the other. In my case, I once needed a fundraiser to help me get the medical ends meet. During this time I found some people to be quite intrusive based on the fact that I had asked for their help raising funds for medical care. I was able to mitigate the various scenarios without offending anyone, but I can see how it can be a challenge.

5. I am not unhappy, in fact, I consider myself fairly happy despite the challenges of living with chronic illness. I work hard at being grateful for the little things. I keep up with my reading and writing because I believe engaging my creative side helps me to cope with pain. I participate in little projects that help the little part of the world I live in but also fill me with contentment. I consider my illness not as a curse, but as a part of my life that has taught me patience, resilience and kindness and has opened up other spaces for me. So perhaps, next time you see me, rather than be filled with pity, maybe we can talk about my projects.

I often tell people that they see me on my good days, and rarely ever during the bad days when I’m hiding away in my bedroom or I’m in a hospital room. The thing about chronic illness is that I will have to live with the good days and the bad days for the rest of my life. It might be a long journey, in which case, I’ll have to deal with people and meet new people who will have questions about my life with chronic illness. That’s okay. I’ll keep explaining and hope that every time I do the interchange of empathy and information increases in the world.

Dream a Reality – and a Book Drive!

Let me tell you about Dream a Reality – a project started up by Faith Chelangat in rural Kilifi where homes do not have electricity by virtue of being off grid the resources.

Dream a Reality is supporting children in those areas to catch up and keep up with literacy by “setting up sheds in strategic areas in the villages, fitting them with solar lamps & reading materials to supplement the children’s studies at night.”

In Kilifi County, 40 students ranging from lower primary to secondary school are benefitting from this arrangement. Dream a Reality also provides volunteer tutor(s) that helps the students with their studies while they are in the shed.

The Dream a Reality shed is a community tool, involving parents, community members and teachers and volunteers in raising literacy levels, investing and committing to the education of the students as well as the community.

Now, *Dream a Reality* needs your help. The Kilifi County Set Up needs books. All sorts of books. Old text books, new text books (current curriculum), reference books, storybooks, novels, magazines.

Please consider donating your books to the *Dream a Reality* book drive. If you do not live near Kilifi, you can drop off your book donations at the August 7 Memorial Park Reception Desk and ask to leave the books for the Dream a Reality Book Drive or  contact Faith through the WhatsApp number (0703247640) on the poster for drop off points.

Thank you so much for your generosity.

Why did He Kick the Cat?

About 8 or 9 years ago, I was in a conversation that resulted in my being ridiculed for the strong feelings I had towards the care and protection of all #animals but more importantly for #domesticated pets. I have a special place in my heart for dogs and cats.

No, I am not a vegetarian / vegan but I believe that even animals kept for food should be treated with such care as to not put them through torture and unnecessary pain. I think beasts of burden should be fed well, provided proper care for any injuries suffered and NEVER caused pain or harm to make them work harder or faster. I believe that if a person cannot afford to feed or care for a domestic animal then they should not have the ownership of a domestic animal. I think that if anyone causes harm or deliberately injures a domesticated animal, theirs or belonging to someone else, they should face some consequences.

But beyond basic care and protection, my pets are loved. I make sure they are well fed and warm, I try to keep them safe, I have worked out arrangements where they get medical care and immunisations. Because of my current unemployed status, I have made sure that no matter what they will be fed and provided medical care, and this by regularly volunteering my professional skills to a veterinary care and animal rescue organisation.

I have created friendships and connections such that if I’m unable to take care of my pets, feed them, walk Guillermo etc then one of my (their) friends would avail themselves to do so. But if I couldn’t provide such care, it would be better to give them up to someone who would love and care for them.

I feel that the topics surrounding animal care and pets in Africa are almost political. During that conversation 8 or 9 years ago, I tried to broach the subject that perhaps how we feel about animals is tied to historical wounds we don’t even know we have. Derision drips behind common sayings like kuosha mbwa ya mzungu. But the feeling behind it is the hurt from #colonial masters treating their pets better than they treated their native servants.

The lady who helps clean my house feels that I am wasting money when I feed my pets. #Poverty and #inequity are other obvious issues related to pet care. While I don’t feed my dog with choice beef cuts, his meals still cost something, which Mama J compares to what she needs to buy a meal for her kids. A previous cleaning lady was so upset about my affection for Guillermo that she collected all his toys and redistributed them to her children. She never came back to work after that.

I’ve been accused of having too much time on my hands, been pointed in the direction of ‘you should give birth to a child instead of wasting time with cats and dogs’. I almost froth at the mouth trying to explain how different and NOT INTERCHANGEABLE the two experiences are, raising a human child, and raising a pet.

While most will be dismissive about my love and concern for animals and pets, I WILL JUDGE people based on their love for or lack for concern of animals and pets. Many will point out at this time that the world’s cruelest villains had pets. Its true. But once I am done assessing intelligence, love for books, honesty, empathy and a sense of justice, I’ll also check whether you might be prone to kick animals.

I have had neighbours attempt to kill my pets. Three of my beautiful babies have been stolen. My puppy Esperanza was fed a substance that made her so ill I had to euthanize her. My girl cat Samantha had her back broken and died in my arms. Guillermo was once shot by an arrow while he was inside our compound. I have since made it my business to keep my pets safe. But it truly bothers me that my neighbours are so capable of causing pain and killing animals that have not caused them harm. Is it just part of our violent nature?

I am reminded of the debatable phenomena often used to point at psychopaths – lighting fires, killing animals, bed wetting. Are you people breeding serial murderers?

As a person living with chronic illness, pets – my dog Guillermo, Cat Fluffy and a fluctuating number of temporary foster animals – form part of care and therapy. My pets have kept me company during the long hours I have to be home alone, made me move even when I would have preferred to curl up and die from chronic pain, helped me make unexpected connections, opened up my eyes to situations that would otherwise have passed me by and kept me warm on tough July days when Nairobi winter and #Lupus have joined forces to crush my bones.

I’ve been trying to write an article about pets and how much they can help people living with chronic illness. I had to run into the issues above first, so I’d love to hear what you think. Please tell me about your relationship with animals.

Lupus and My Mind

Whenever I’ve tried to trace my illness as part of my conversations with my doctors, my mental health therapist, or just with my mum, I can tell that my symptoms started in infancy, probably even while I was still a foetus. Whether some of the phenomena is what developed into autoimmune disease, or simply made me susceptible to autoimmune disease is up for debate. It’s been a long journey.

Even so, my health has deteriorated a lot in the last 7/8 years. Between disease progression and side effects from medications a lot has changed for me including my physical appearance, fitness levels, mental health status and general outlook on life. Finding acceptance is a day to day, and often, uphill task.

This past weekend I attended an event that has in the past meant long hours sitting and listening to speaker after speaker, intermissions where opportunity to make new connections and invariably run into old connections, lots of photo sessions and so on. In the past, I’ve loved every minute of it.

In the run up to the weekend this year, I found myself worrying about things I would never have given a thought to 3/4 years ago. I worried about sun exposure, pain levels, exposure to infections, discomfort from sitting too long, dehydration, skin issues. All these had fixes or at least some kind of mitigation with early preparation. Sunscreen, pain patches, face mask, special seat/cushioning, moisturisers, and other little things that help people with autoimmune disease cope.

I did not, however, expect the sudden dread that hit me on the morning of the first day of the event. The dread of meeting with people who knew me in a different time, when I was younger, a fitness fanatic, super active and most definitely not as battered by Lupus and other autoimmune diseases as I am now.

I did not expect this feeling. I did not expect how strong it was. And when I fought it and made my appearance, I did not expect that I would be so preoccupied with the changes Lupus and autoimmune disease have made on me that I would almost hate the socialising part of the event.

I noticed old friends faces when they recognised me but were also shocked by my weight gain, my moon face, my inability to walk properly. I noticed the old friend who walked up to a group of friends and greeted everyone enthusiastically by name, but then wasn’t sure if it was really me, so she introduced herself. I noticed the old friend who had heard I was unwell but had no idea to what extent so when she saw me she just felt awkward. I noticed the old friend who came at my illness like she could fix it and ended up saying all the wrong things. I started carrying the burden, like I could make it all better for them so they didn’t have to deal with my being ill. That was exhausting!

And then there’s the comparison aspect of reunions. People try to be kind and respectful, but as they introduce their husbands and kids, you see them look around for yours. And even though I know as clearly as day that my reasons for not having a husband and kids have nothing to do with Lupus, a weird part of me associates my rather different life path with the turns illness has forced me through.

At some point, I retreated to what turned out to be a quiet place where I could watch but not interact with people. By then my mind was in a deep dark space. It took everything to reach in and pull out the positive coping skills I’ve been learning.

I attempted to spend an afternoon immersed in the beauty of african fabric prints and interpretive fashion design. I’ve never seen so much colour! And the hair! I witnessed so much genius in hair design … and then I started thinking about how painful it would be for me to spend the hours it takes to wash, dry, straighten, oil and design my hair into anything let alone any of the braid and knot designs I was seeing. Then I thought how much fabric I could buy, how many outfits I could have made for me with the cash it cost to pay for my monthly medical care.

Why stop there?

I thought about all the things I have wanted to accomplish but have either had to abandon, delay or change plans for because of illness. I thought about relationships, romantic and not, that have ended or been destroyed by issues directly related to my constant illness. I lingered long over the memory of the man I thought could be a life companion. I doubt that our relationship failed so spectacularly because of Lupus. That failure had had a lot to do with our personalities and our priorities, but Lupus and all the changes it made on me cemented the end.

Of course, I have discussed all these things with my therapist, and if you’d asked me on Thursday I’d have said I was finding acceptance and finding wholesome ways of coping. But by Sunday I was unravelling.

I don’t know how much of my mental health challenges are independent of or caused by Lupus or any of the other autoimmune syndromes that affect me. Either way, I know my mental health affects my autoimmune state by either helping me cope better, or by creating stress states that can trigger flares.

If I zoom out, I am not surprised by mood flares. Over time, and lots of help, I have learnt to recognise the bad zones and been equipped with basic skills to help me get out. That’s not to say that I won’t find myself coming too close to black holes as I did this weekend. And some of those times I will need a bit more help to right myself. But once I recognise a pain zone, here are a few things that help me :-

  • Rest. Fatigue can impair my thinking, so resting is an important part of healing
  • Write down how I feel, and attempt to identify why
  • Listen to uplifting music
  • Light exercise / walk with my dog
  • Breathing exercises
  • A shower or bath with scented soap
  • Read a book I’ve been looking forward to reading
  • Talk / spend time with a trusted friend

Sometimes, my basic first aid kit for mental health won’t work, so I know to call my doctor or therapist and go in for care. My family and a close friend are also able to tell when I’m too close to a black hole and can either support me through the first aid phase or make sure I get help when it is definitely time.

Part of accepting my autoimmune condition, has been learning to accept the mental health components of it. That’s what this past weekend has been about.