Friends Indeed… #LupusAwareness

I started getting sick often soon after moving to a new town. I actually considered that I was perhaps allergic to this new town. I’d just lost a job, still trying to cope with the death of my brother, still in the middle of figuring out a whole other lot of other things. Getting sick was not very conducive to making new friends or keeping old ones who lived several hundred miles away.

It was at least 5 years before I got the SLE preliminary diagnosis. During which time I had trudged through several jobs, gotten gravely ill several times, made and lost a couple of friends, went through a failed relationship, plunged into severe depression, picked myself up and got myself back on track and then almost died from kidney failure.

No, things don’t get better. You learn to cope and to survive as long as there is breath in you. You learn to see the beauty and the light. And in that way it becomes easier.

Perhaps the most important lesson I have learnt, is to Appreciate the support I have. In a way, it also means not tolerating negative vibes and petty relationship politics. If you are an energy vampire I steer clear of you, maybe I’ll even cut you out of my life.

At the same time, no matter how I am feeling, I try to bring positive energy to the people around me. And if I find that for some reason there is no positive exchange between us, I excise you out of my life. 

This might seem a strange thing to do, considering the fact that people suffering from chronic illness often have to deal with so-called friends disappearing from their lives. 

It is true. I am not the popular life of the party girl I used to be. Not very many people are inviting me to their parties. I get very few calls or texts from people just wanting to know how I am. I can count the people I call friends on one hand and still have fingers left over. But the point is, I do have those three people I can count on. And it is important that I be a positive addition in their lives. 

Because when I’m puking my guts out, or shivering in that hospital hallway – they are the ones who show up bleary eyed and trying to hide their fear. They are the ones who kick me out of bed for that walk I’m not so enthusiastic about. They are the ones who call me at 12.43pm to check if I ate lunch and have remembered to take my meds. They are the ones who point out how beautiful that flower in the garden is turning out to be. They are the ones who remind me that it is not all about me, that I have so much to offer the world. They are the ones you just cannot afford to neglect or take advantage of, because they are friends indeed.

Roll the Dice, Babe – #LupusAwareness

Here’s the thing about Lupus – You probably have to see several doctors to manage the illness. It can be bloody expensive, so a good insurance cover is always a good thing.

In the last 12 months, I’ve seen an endocrinologist, a cardiologist, an ENT specialist and I’m likely to be seeing a demartologist soon. 

The year before I more than maxed out my insurance policy and ended up with horrendous debt. The only other option I have is to accept and suffer under the public health care system which means long endless hours at Kenyatta Hospital or some level 5 hospital. 

That’s the thing about living with Lupus in Kenya. While there are doctors who are qualified to manage autoimmune disease, often they are overstretched and frustrated in public health care systems. Thus the quality goes down and to make matters worse becomes frustrating to access.

The other side of the street isn’t much better. It is expensive, for one thing. But there is also the very real issue of the fact that Lupus is such a mysterious illness that even the best healthcare practitioners have to play the guessing game sometimes. Now, if this is happening in a commercialized system then things really go to the pits.

Balancing healthcare for a Lupus sufferer is a challenging gambling game at best. 

Friendly Fire – #LupusAwareness

So the last few days I’ve been trying to ignore the fact that I may be a little more than the usual inflamed. Doc just confirmed that I’ve got another chest infection. And I went through the usual ‘Do I really have to take all those meds?’ routine.

The best I can and should do is take care of myself before the infection gets me. Diet, proper rest, exercise all play a part. As does medication. But every Lupie has to accept that when in flare you are more susceptible to infection than usual and way more than people with relatively normal immune systems.

It is always weird understanding, let alone explaining that the basic definition of any autoimmune disease is that your immune system turns against your own body. Friendly fire. 

This internal fight makes your system even more susceptible to outside attacks. Another thing I have to remind myself is that the medication I take is often also meant to inhibit disease activity – that is lower the activity of my immune system so it doesn’t attack my organs. Delicate balance.

Well, here we go. Take cover! Fire in the hole!

Take your Meds, Child – #LupusAwareness

Every Lupus soldier knows the struggle that comes with prescription medication that they have to use to control the autoimmune disease and deal with infections as well as other symptoms brought on by the disease. Almost all medications have side effects. Some side effects are more challenging than others and you find yourself actually weighing the benefits of the medication against the side effects.

I think the biggest challenge for me has been dealing with prednisone striae. Sure, the weight fluctuations bothered me, the weight gain more than anything. And yes, the moon face makes me feel a little more than self-conscious. Other meds bring on nausea, headaches, teary eyes, itchy eczema – side effects which often seem really close to the symptoms of SLE. But nothing has bothered me as much as the striae.

Prednisone Striae – they are massive stretch marks that show up as a result of the skin losing its elasticity due to prednisone use. They are not the usual weight gain-weight loss stretch marks. They are angry red welts some as wide as half a centimeter, and as long as 3 inches which show up on the back, stomach, thighs and arms. Sometimes, you can just feel your skin ripping when they happen. They itch and can be slightly painful. And they are ugly!

I’ve used just about anything to try and control them, from bio oil and loads of Palmer’s Stretch Mark lotions to recommendations of grape seed oil and olive oil combinations that smell anything but pleasant.

No, don’t make a recommendation because I’ve probably heard it, and tried it already.

When I’m in flare, prednisone controls inflammation and connective tissue pain. Without it, something as simple as getting out of bed can be more than difficult to do. So, it’s either I deal with the striae or risk being bound by pain.

There… I’m taking my meds. And trying everything that sounds remotely promising to control both the symptoms of Lupus and side effects of medication. 

Storms – #LupusAwareness

Challenge: Dealing with the storms.

Pain sweeps through my life in bits and pieces, and in massive storms. The storms sometimes catch me by surprise and leave me in shock, exhausted and often depressed.

Low grade chronic depression is a constant companion. But sometimes depression and despair sweep through in overwhelming waves that leave me drenched in fear and cold.

I’ve come to accept that part of living with Systemic Lupus Erymathotus is about understanding and coping with the physical symptoms, but also about dealing with the emotional and psychological side effects.

Someone You Know Lives With Lupus

 
May is Lupus Awareness Month. Lupus, in its various forms, is a mysterious and difficult illness to live with. I’ll be talking about my personal challenges living with Systemic Lupus Erymathotus during the month of May.

Look online to see other fighters’ personal journeys. It could be that someone close to you needs your support. 

My Husband and I

My husband and I are not talking right now. That may not be a very good thing considering the tension in the homestead. See, we live in his parents’ homestead with his parents and two unmarried sisters who have children. His father is the local Redeemed Church Pastor. Everyone knows that my husband’s father is not really his father; but he raised him, so he is his father.

There are those who insist on bringing up the matter even though it should have been laid to rest a long time ago. The story is that my mother-in-law was pregnant when she got married to the man who later became the Pastor. It would seem that the father of the child in her womb was not really the man who married her. How many stories like that have you heard? I think the only important thing is what the Pastor feels about his son, my husband.

The Pastor has other sons, two of them. One of them works in Industrial Area and lives in Mukuru wa Njenga. The other is a cashier in a supermarket, and lives in Kibera. I think they are doing very well. My husband is a farmer, but when there is a drought, like now, he looks for work as a manual worker at one of those construction sites near our home, here in Kiserian.

As far as I have seen, the Pastor has always treated my husband as his own. When my husband first introduced me to his parents, the Pastor was very kind to me. His wife, my mother-in-law, was acidic from the very start. She hated me at first sight. There have been very many quarrels in this homestead. The Pastor tried to sort that out by cutting out a piece of land a few meters away from his own house and advising my husband to fence it out, and make our entrance facing the road, so we did not have to go into themain home when conducting our business.

That worked for a while but the troubles soon returned.

When I was pregnant with my second child – the first one was born while we lived in the main homestead – I had a little trouble. My blood pressure rose, and the doctor warned that if I worked, I would lose the baby. When the pastor heard what the doctor said, he ruled that his two daughters should be the ones to help me with my housework.

We- sheee! Thatwas the mother of all troubles. Soon there were stories that I was just pretending, so I didn’t have to do any work. And then an old friend from primary school came to see me, and there were more stories about how he was the father of the child I was carrying. By the time I had my baby by Caesarean, I was so fed up I wanted to go back to my mother. But my mother is poor; my babies and I would have been a burden to her. So I vumiliad and went back. Ngai! Those were the days I wished I had gone to that secondary school instead of getting pregnant and getting married.

You would think that now that a healthy baby was born inspite of the trouble, people would be thankful and get back to other worries. My Younger sister, who had just completed primary school, was asked to help by my mother. The rainy season had just begun, so I was worried about much more than my housework. But my sister is such a hard worker. Imagine she dug the small shamba we were given almost by herself. By the time my husband finished his kibarua and came to help her plant, she had cleared and dug so well that it was easy for them to plant in just two days. Can you guess what stories came out of that? That my family was taking over the Pastor’s land. That is just about when the matter of my husband not being the Pastor’s son came up again. There was such a big row, which made even the Pastor’s other sons come from Nairobi and demand their inheritance before the Pastor was ready to die. I have never seen anything like it.

At the end of it, with the Pastor foaming from his mouth, everyone was forced to sit down and listen. The Pastor said something that I will never forget. ‘I worked hard to get this land. But not everyone in this country who works hard gets anything. God gave it to me. And I will give it to my children, all my children.’ When he said that last part, he looked at myhusband. There was a murmur of dissent, but the Pastor had spoken.

I thank God for making the Pastor a reasonable man. Then I pray that someday my husband and I might be able to get some land of our own. He works so hard, you see. This homestead, mine and his mother’s would never lack for food if it was up to my husband’s hard work.

The quarrels have never ended. In fact, my husband is not talking to me because there was a story brought to me by Mama Cera down the road: that my husband was seen with another woman at a bar in Rongai. I was stupid because I believed it before talking to my husband. So I did not ask him about it: I confronted him. It was only later that I remembered that Mama Cera once sided with one of my sisters-in-law when there were rumours going round about me.

I guess I will have to find a way to get my husband talkingto me again. But I know as long as there is not enough — enough land, enough food, enough money — there will always be trouble brewing.