My Irritabilities

So, it's been pretty much 2 years since I was last admitted to hospital and I'm acutely aware that I haven't written much in that time, so here goes. I've been on pretty regular medications since then; Aciclovir, antiviral; Voriconazole, antifungal; many antibiotics, antibacterial; Ferrous Sulphate, iron deficiency; Prednisolone, immune suppressant; Sirolimus, immune suppressant; Romiplostim, to multiply platelets; GCSF, to multiply neutrophils; Hizentra, to up my immunoglobulin G levels. It's been a long battle, and I'm never going to be to in the clear, really. I think that's something that has really hit me recently. I've been trying to work towards this impossible goal of being drug free. I was drug free for a while, but I've realised now that this is impossible. Being drug free before probably shouldn't have been an option. It meant I slipped off the hospitals' radars for a while and therefore my health slipped into a slow decline...

Is anyone else as insanely confused about this statement as I am? Either way, I'm going to go into detail about why I hate it so much.   I suppose my initial reaction to this is the fact that it just doesn't make any sense, whether logical or illogical. Because how on earth can someone never be sick?  There's no possible way a person can go from life to death without experiencing some kind of illness, whether it's a mild cold, a tummy bug, an ear infection, anything! Even babies get ill, so the only time it would be ok to say this would be between birth and a baby's first cold. Considering babies can't talk, it would be impossible for them to actually say these words.  I don't know about anyone reading this, but I've been mildly ill plenty of times, colds, coughs, tummy bugs. I've got the sniffles as I type.  Unless, it only counts terrifying and serious diseases and illnesses. For example, heart attacks, cancers, necrotising fasciitis, or...

So, currently my blood results are good. After months of not really knowing what’s been going on, and not getting the desired results. It’s a relief to say the least. So really everything apart from platelets are fine. Looks like the Rituximab and steroids and cocktail of other pills seem to be doing the trick. As it is, my platelets stand at 15. Last week they were 5, so small victories... I’m currently taking eltrombopag, which is a platelet booster and I’ve been started up on my sirolimus again, but only a small dose, which seems to have helped my platelets. Got to lot having a rare immunity disorder, right? Anyway, the real aim of this post is to enlighten people about CVID, which I realise I’ve never really talked about. Not like I have everything else anyway. CVID, which stands for common variable immunodeficiency, is a primary immune disorder. There’s nothing common about it, as only 1 in 50, 000 people are diagnosed, though I’m sure that means there are ple...

So, the problem with being hospitalised multiple times, especially in a short space of time, is what it does to your life. It halts it. Not that I had much of a life to begin with, but maybe I would if I had an immune system. Immune systems are so complicated, with so many elements that need to be monitored closely. Just off the top of my head there’s, RBC (red blood cells), haemoglobin, WBC (white blood cells), neutrophils, lymphocytes, potassium, sodium, haemocrit, platelets, chloride, creatine, immunoglobulins. And that’s just in the blood; there’s the organs which work in conjunction with the blood, and/or create it; the lymph-nodes and vessels, bone marrow, the spleen. All in all, it’s incredible that all this shit, jumbled together, works in a healthy person. It’s a wonder that immunocompromised people, like myself, manage to go through any period of time without something going wrong. And for me, when something goes wrong, other things do too. It’s never a simple fix, a...

Ok, so this one is going to be a little different. This one is for those people who might be going into hospital for some sort of treatment, or just to spend an inordinate amount of time there. I'll give you a run down of everything you might need, as well as everything you might not. We'll also talk about what you need to prepare yourself for. So, here goes... As a side note, steps one and two are top priority. All the others are in no particular order. Step one: Mentally prepare yourself. If you know you're going in, that is. I had an inkling, on the 28th of June this year that I might be admitted to hospital, but only because my immunologist had briefly mentioned it when my blood test showed low WBC. I was stupid enough to mentally prepare myself for a few nights on the inside, and not consider the fact that I might be in for much longer. I was putting too much faith in the fact that I'd been in before and that it would all get sorted much quicker, forgetti...

Hospital life is nothing like real life. In hospital everything is done for you, pretty much, (save for the occasional injection). You food is ordered in your room, your food is delivered to your table, your water is brought in two to three times a day, they'll make you tea and coffee if you want, they'll sort your meds, they'll do your blood pressure, the cleaners will clean your room and toilet; everything, to the best of their abilities, is done for you. The nurses change your bed sheets every day, although there were a couple of days mine were missed. This isn't very nice when you've been sweating into the sheets over night and then have to sleep in them again the next. What also isn't very nice is when they take your empty water jug and don't bring another full one back for four hours,  despite you asking four times. But, I mean, that only happened once... I'm a very quiet and hassle free patient according to a lot of the nurses who've...