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.

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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.

Help Catherine Mwangi Get a Kidney Transplant – #Lupus

I am Catherine Mwangi, a lupus warrior diagnosed 2 years ago with complications leading to end stage kidney disease and subsequent kidney failure.

For the 2 years, I have been on dialysis twice weekly as well as undergoing lupus treatment.

As recommended by doctors, I’m scheduled for a kidney transplant in India. However, prior to the transplant I will require intense management of the SLE (Systemic Lupus Erythromatosus) to enhance the success of the kidney transplant.

The estimated cost of the treatment pre and post the kidney transplant is estimated at KES 4 Million.

I humbly appeal for your support and contribution towards my treatment.

No amount is too small.

You can make a direct Mpesa donation with Paybill 891300 Account NJERICATHIE

For details on how to donate by card or other mobile money go to her Mchanga page: Catherine Mwangi Medical Appeal.

THANK YOU AND BE BLESSED.

Prednisone – Living with Lupus Medications & Side Effects

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 and skin issues to roid rage and easy bruising.

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 which might mean a reduction in physical activity, 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 variations of 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.

My Kind of Tired – Living with #Lupus Fatigue

My mother reminded me that in my teens I used to wake up at 5am so I could be done with housework before the sun went up and fatigue hit me. I used to have pretty bad fatigue but it is nothing compared to what I experience now.

Chronic Fatigue is a common denominator in most Autoimmune disease. It can exist as a symptom of Lupus (or any other autoimmune disease), as a side effect from medications, or as a completely separate autoimmune adjacent chronic illness known as Myalgic Encephalomyelitis or more commonly Chronic Fatigue Syndrome.

During the early phases, even before they have figured out what is going on, most patients learn to compensate for this debilitating aspect of chronic illness. So for example, a young woman will rush to complete the housework before she gets hit by the complete and utter fatigue. A young career person will figure out when the slump hits them during the day and work around it.

Even so, chronic fatigue is noticeable. It is generally dismissed as laziness, as the girl who sleeps too much, the boy who never follows through with his responsibilities.

In truth, the person living with chronic fatigue is quite likely not dismissive of their life roles and responsibilities. They are always trying to catch up, probably hoping people don’t notice how hard it is for them to keep up, dealing with frustration and feelings of inadequacy that can lead to depression.

The kind of fatigue I’m talking about here is not the kind that can be fixed with some rest. It is a chronic exhaustion as a result of the body being in constant combat mode on a cellular level. It is the kind of fatigue that leaves you completely drained, without the energy to even lift a glass of water.

As autoimmune disease progresses, the bouts of chronic fatigue become more severe. Patients have difficulty eating, brushing their teeth, showering, changing clothes etc. Leaving the house becomes a monumental task. Lining up tasks or errands requires herculean effort. Keeping up with life, friends, responsibilities and goals takes everything.

Living with chronic fatigue requires planning so as to avoid over-extension,  planning for adequate sleep as well as mini rests between tasks, and the ability to ask for help and hopefully, supportive family and friends who can help during the worst of it.

Persons living with autoimmune diseases get reprieves in ‘good days’ or sometimes longer periods known as ‘remissions’ when disease activity is low. During those times, the chronic fatigue may lessen and the person may be able to do more.

During those times, patients must remember that the goal is to keep disease activity low for as long as possible. Therefore they should keep up with their daily medications, avoid risks such over exhaustion or sun exposure, eat healthy, drink enough fluids and live a generally positive lifestyle.

What do you do to cope with chronic fatigue?

The ‘New Normals’ We Accept While Living with Chronic Illness

I had health challenges as a child, but had a much easier teenage before illness started building up in my early twenties. Even so, there were things that I have experienced all through my life that I can now explain because I understand my autoimmune situation.

I developed Raynaud’s while still in high school. I lived in the hot and humid Mombasa in Kenya but my school had air conditioned class rooms or at the very least ceiling fans. I never knew why my hands and fingers went numb and turned white when I went indoors.

I’ve also never been able to handle extreme temperatures either way. Walking in the hot Mombasa temperatures was rough because I would almost always overheat and not sweat enough to cool down. (Sjögren’s) The first thing I would do when I got home, or where I was going was look for water to wash my hands and cool my face. I was super sensitive to the sun, so I’d avoid walking while the sun was high, carry a small umbrella, look for Shea butter and coconut oil because some old lady told me it would help with my sensitive skin.

I wanted to know how Lupus and /or chronic illness had affected other people, so I went ahead and asked on my page. Some of the responses I got reflect my own experiences, others remind me just how much more careful, empathetic and kind I have to be with everyone because you never know what they have lived through to stand where they do.

1. “Showering takes so much energy from me. I have to prepare mentally. Then when I go in I have to make sure everything is in reach. I shower sitting on a shower stool made for the infirm. You realise there’s a lot to cleaning up. The scrubbing, rinsing, drying, oiling / moisturising, sunscreen and other necessities, then you have to get dressed. Afterwards, I’m so exhausted its like a ran a marathon so I need a bit of time to get my breath back. This used to be so easy!” ~ Person Living With Lupus & Heart Disease

2. “The stress that comes from trying to be at your best for your friends’ and family’s sake can be so draining. “Okay” becomes a default answer to so many questions, but “okay” also means so many things at the same time. I miss my old self, the self that didn’t get tired 15 minutes after waking up, didn’t get nauseous over everything and had no pills to take. No one prepared me for the uphill task that emotional turmoil would be with Lupus.” ~ Waithira

3. “I never open my bedroom curtains so that I can be in darkness.” – Anonymous

4. “As a person living with Spinal Muscular Atrophy (SMA), sitting is a challenge due to sclerosis. Feeding is hard too, since my mouth can’t open fully.” ~ Anonymous

5. “Mine has to be waking up and staying functional. I sleep in aide of medication that knock me out. It takes me till midday to fully get up. So usually I’ll take an energy drink to jumpstart me but by 3pm I’m so exhausted, so I’ll have to leave work early to go rest. Now I’ve been labelled lazy by people around me. I wish they understood.” ~ Anonymous

6. “I’ve had rheumatoid arthritis for 39 years. Since I was a teenager. So I’ve got used to it. Challenges include carrying shopping, chopping food to cook, dropping and breaking things (I need both hands to hold a cup of tea) and the treatments, grateful as I am for their help,which hammer your immunity and make you vulnerable to every bug. And tiredness. I hate going out for dinner because I just want to be in bed at 8. When I was younger I felt my deformed hands and feet were ugly, but I can now embrace them as a part of me.” ~Juliet Barnes

7. “I have been living with SLE for the last 9 years… 9 years of ups and downs. My life has completely changed. I have lost friends and loved ones. I can no longer walk short distances without resting. I can’t bend for more than 5 minutes – my Kidneys are inflamed and the right one is only functioning at 10%. I can’t do most of the house chores I used to do. Friends who keep on saying ‘you always complain of pain everyday’. Not forgetting the drugs that I keep on taking 24/7, moods swings (mood error), moon face, and stretch marks that make me look like a ‘zebra’. SLE has really changed my life.” ~ Anonymous

8. “Matatu has always been my preferred mode of transport. It has never been an issue for me. But I am that girl who was always late so hopping in and out of matatus in tarzan-like motions was near automatic. Until one day I could not get into one. Lupus, consequent muscle atrophy, the medications and a drastic reduction of activity has greatly reduced my motor ability. Now, getting into matatus has become something of a science, the correct step, a precise angle and a certain degree of inclination. Buses, in particular, have been nightmarish. Nothing is more embarrassing than needing someone to pull you into a matatu as another pushes you from behind. You quickly lose the desire for travel, and home becomes some sort of prison.” ~ Kanja Mwingirwa

9. “One of the things that really used to get to me was the low energy. I was coming from a point where I was super active and energetic. I would work Monday to Saturday in my high heels, and my free time was used for my side hustles (after 5pm, Saturday after 12.30pm and Sundays even).

I was/am self driven and did not understand why I couldn’t wake up early and once awake I would be fatigued till late in the day, couldn’t climb a flight of stairs without being breathless, and did not want to engage in anything extra. I was always in pain and discomfort. So painful that if someone touched me with a little pressure I would be in excruciating pain, and always suffering from one symptom or another.

My hair fell off and the butterfly / malar rash has since transformed my face. Lupus also affected by mind. Brain fog would sometimes attack even in the middle of a meeting. I would get very easily upset and sometimes confused.

Following my diagnosis and kicking of treatment, eating the right diet (AIP) the support of my family, a few friends and the Lupus support groups and community I have since improved and while some days are worse than others most of the symptoms have diminished or disappeared.

My hair has grown back. Mouth sores have since reduced and only come and go, wounds come and go but are much less frequent, my skin is still healing and will get there.

I have more good days than bad, and have learnt to be more grateful for every small gift life has to offer, have less expectations, listen and obey my body and put myself first.” ~ Evelyn

I imagine that some changes affect some people more than others. But everyone’s experience is valid. It is okay to feel overwhelmed in the short term, but once you have acknowledged those feelings you can begin accepting the challenges and building new normals. At least, I hope I can.