Wednesday, November 25, 2015

So what the fuck is wrong with her anyway?

Sister Lulama 
I have been asked via FaceBook inbox a number of times what exactly is wrong with me.   So here it is.  I am crazy but I like that part of me. Secondly, the only part of my body that seems to work well is my heart - it is filled with love and is just like a South African taxi... there is always room for one more person. Seriously, here are my diagnoses. 
Hairy Cell Leukaemia (a very rare leukaemia where only one person per 3.2 million people are diagnosed per year). I have had three rounds of chemotherapy for this and still have MRD (Minimal Residual Disease) This one is not really such a problem for me, although it did metastasise to breast cancer which ended up with me being tit-less. 
Leukocytoclastic Vasculitis (why I have a permanent port in my chest for infusions as all my peripheral veins have collapsed)
Hypogammaglobulinemia: This is a big problem. Because I have Primary Mannose-binding Lectin Deficiency and Secondary Humeral Immune Deficiency, it means that I do not have an immune system. There are no building blocks to even jump start the immune. And there is no cure. Having no immune system makes me vulnerable to any virus, bacteria or allergy and this is what puts me on my back and in hospital time and time again. Hypogammaglobulinemia is so unpredictable that I can’t make plans for later today, never mind for some time next week.  I live in a sterile bedroom and the only place I go other than my bedroom and bathroom, is to hospital. Even when I am there, I am vulnerable to any germ so I am put into isolation and barrier nursed. That means red bags for incineration, yellow bags for autoclaving and everyone who comes into the room is dressed up in theatre gowns, masks, boots, headgear and gloves. I have to have IVIG which is an immune system collected from donated blood and is transfused into me every second week. This gives me a kind of temporary immune system, but it is used up within two weeks so I have to go and get it again. It is a moerse big deal thing because it can cause all kinds of problems from anaphylaxis to host vs graft disease. Every time I go there is a possibility that I won’t come home. And if I do come home, I have to contend with the side effects of the IVIG. So I stare death in the face every second week – but without this infusion I will not live longer than an estimated six weeks. Blood donors keep me alive!
Another little problem that I have is that my kidneys are not functioning properly – but we are not near the stage of dialysis yet. These are just the names of the things that are wrong with me and I have not stated the symptoms of them – all I can say is that they are horrid and I would not wish these symptoms on my worst enemy, not even on Robert Mugabe and he truly is my worst enemy.  I can go from full steam ahead to dead stop in in less than half an hour. I don’t know why I do not get well and I do not die. It is what it is. Lots of people tell me that I am still alive because God still has stuff for me to do, but I do think He could be a little more kind to me. Every time my loved ones and my dearest FB friends think that this time I am a gonner, I seem to make it round the final bend; on wobbly legs and I totter down the main straight to be back amongst the living again…humorous, laughing with joy in the face of death once more. But each time it is a bit harder, and each time I am a bit weaker and each time a little of me has been left behind. And each time, I struggle harder to do the little things I used to be able to do before the last crisis.   Because I have all these rare diseases, does not mean that I am not still a human being. I am still me. I am just a prisoner of this body. I still worry about finances, how I can find the energy to clean the house or sometimes even to make a cup of tea and I worry about those I love, the state of our country, work, home life, my family and friends.  And I still want to be part of life – the part of life that only family and friends can give me by calling on the phone or visiting me.   My whole world has changed and normal no longer applies to me.  My new normal is feeling shitty.  And because I feel nauseous and ill so often, I get grumpy and unreasonable.  Could you love me through that?  
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