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life changes
Oct. 14th, 2017 07:17 pm So, this is just for me, then, because no-one else is reading this. Maybe I'll delete it in a few months' time, maybe not.
My life changed in the last weekend of August, when I started having weird symptoms which I did not put together, until much later. I've never had bleeding gums before, but I shrugged it off, and reminded myself of the dentist's appointment I'd already scheduled.
Then, on Monday, I was watching the Game of Thrones finale when I realised that my fan had stopped working and there was a weird smell of burnt plastic. Shit, I thought. New fan. After the show finished, I decided to put on my support stockings because my legs were swollen, and noticed what looked like a rash up one leg, ankle to knee.
Huh, I thought. Heat rash?
On Tuesday, we went to Atrium to buy a fan. Before we left, I saw that my left leg had joined the right, with the same 'rash'. But it didn't feel itchy, or anything. A tiny voice in my head was telling me it wasn't a rash. Sometimes I'm too good at ignoring tiny voices in my head. We ate a ciabatta at Atrium, and it was so hard and scratchy the inside of my mouth felt sore for hours afterwards. When I finally looked inside, I saw horrible red pustules which I found out were blood blisters. Ok.
On Wednesday morning, I woke up and my arms were bruised. There was one particularly fetching mark in the shape of my T-shirt sleeve. I made an appointment with the doctor, but still decided to keep to my happy state of denial. The only blip was when I took my stockings off, and looked at my toes, thinking they were dirty, asking myself how the hell were my feet dirty - I'd been indoors all day! And that's when I realised that the bruises were also on my toes.
So I went to the doc, and he obviously said that it wasn't a rash, using his favourite term, "petechial hemorhagging', which I kind of figured. He clearly did not want to panic me, because he said it might go away on its own (not at 48, lol). But he rushed me to go for a blood test, at St James, a horror all of its own (welcome to Malta, parking nightmare capital of the world). So I went, had the blood test done, had them argue about when I'd get the results, but then they sent them to the doc anyway.
So he phones me, some hours later, and says there was a problem (mumble mumble) and I need to do the blood test again, the next morning. Ok. Spent a very bad night. The next morning we decided to try the so-called parking garage, shared with a hotel. We had to drive in so far, we ended up in a whole other street from when we started. Had blood taken, went back to the hotel to get the car.
It was Thursday, so shopping day. I still remember telling my mum I feel fine - I don't know why I'm bothering with the test. That day they didn't have anything edible at BR Guest besides the so-called Southern Fried Chicken (if an actual Southerner ever tasted it, they'd sue) - I say that I might have savoured it more if I'd known what was coming, but it really wasn't very good.
So, I was feeling a bit tired, and decided to lie down, when the doc phoned me. Apparently, the blood test showed that I had a condition called (name I only really understood later), and I would have to go to hospital straightaway. Like, now. I just remember asking, stunned, if I would have to stay there, and he said yes, for a couple of days.
I was still in shock when I told mum, and went back to pack some stuff that I would need, but left a lot behind, because shock. I'd never been to hospital - all I can say is I'm glad it happened now with the new state of the art place. St Luke's was a nightmare.
She phoned him back to clarify some things, particularly that I would need to pick up the results of my blood test from St James first, and then off to Mater Dei. While I waited for them to get it, I had a lovely view of a group of assholes playing football against the walls next to St James (a fricking hospital). I cordially wished them dead, and still do.
And then, off to Mater Dei. Waited for an hour in the emergency room, and then more hours once I finally got admitted, before I finally saw a doctor. That's when the tests started - EKG, Chest x-ray, bloods taken, etc etc. Over the next 24 hours I'd have a CT scan and ultrasound, and have more bloods taken. And questions - endless questions about infections, new medications, etc etc.
Finally the diagnosis, in the exact words the doctor had used: Idiopathic thrombocytopenic purpura. There was a lot that I didn't know about it in those first days. That it doesn't go away in adults was one. That I could have died was another. Over and over it was explained to me that "idiopathic" means it arises spontaneously and the cause is unknown. I do get it - I got it the first few times.
It's an auto-immune disorder, and I'd very much like to know why my immune system has decided to destroy my platelets, which were at 0 when I was admitted. I think everyone was surprised that I was still upright.
But that wasn't the worst part. The worst part is that the cure (steroids) is rivalling the disorder for horribleness. I didn't know that steroids can raise blood sugar, especially for people who might be prone to diabetes anyway. So now, I'm following a pre-diabetic diet, which is playing merry hell with my stomach, or rather, bowels, because a person who's had IBS for 20 years doesn't do well on a high fibre diet. Sure, the steroids stop the diarrhea, but trapped wind is its own form of torture. There's the insomnia, the aches, the mood swings, the depressed immunity, the fact that first my knee turned into a daily ball of pain, and then I pulled a muscle in my leg just turning around in bed abruptly. Of course, I thought it was thrombosis, even though my legs are better than they've ever been. One panicked visit to the doc later, and leave in euphoria that it's "just muscular".
I mean, sure, my platelets are up. Hooray. I've lost some weight. Yay. Though my face looks like there should be astronauts landing on it and planting little flags. I'm terrified of getting sick and am drying out my hands with hand-sanitiser and wipes. I'm tired of people telling me I look well - I don't feel well.
I've been on steroids for one and a half months now.
My life changed in the last weekend of August, when I started having weird symptoms which I did not put together, until much later. I've never had bleeding gums before, but I shrugged it off, and reminded myself of the dentist's appointment I'd already scheduled.
Then, on Monday, I was watching the Game of Thrones finale when I realised that my fan had stopped working and there was a weird smell of burnt plastic. Shit, I thought. New fan. After the show finished, I decided to put on my support stockings because my legs were swollen, and noticed what looked like a rash up one leg, ankle to knee.
Huh, I thought. Heat rash?
On Tuesday, we went to Atrium to buy a fan. Before we left, I saw that my left leg had joined the right, with the same 'rash'. But it didn't feel itchy, or anything. A tiny voice in my head was telling me it wasn't a rash. Sometimes I'm too good at ignoring tiny voices in my head. We ate a ciabatta at Atrium, and it was so hard and scratchy the inside of my mouth felt sore for hours afterwards. When I finally looked inside, I saw horrible red pustules which I found out were blood blisters. Ok.
On Wednesday morning, I woke up and my arms were bruised. There was one particularly fetching mark in the shape of my T-shirt sleeve. I made an appointment with the doctor, but still decided to keep to my happy state of denial. The only blip was when I took my stockings off, and looked at my toes, thinking they were dirty, asking myself how the hell were my feet dirty - I'd been indoors all day! And that's when I realised that the bruises were also on my toes.
So I went to the doc, and he obviously said that it wasn't a rash, using his favourite term, "petechial hemorhagging', which I kind of figured. He clearly did not want to panic me, because he said it might go away on its own (not at 48, lol). But he rushed me to go for a blood test, at St James, a horror all of its own (welcome to Malta, parking nightmare capital of the world). So I went, had the blood test done, had them argue about when I'd get the results, but then they sent them to the doc anyway.
So he phones me, some hours later, and says there was a problem (mumble mumble) and I need to do the blood test again, the next morning. Ok. Spent a very bad night. The next morning we decided to try the so-called parking garage, shared with a hotel. We had to drive in so far, we ended up in a whole other street from when we started. Had blood taken, went back to the hotel to get the car.
It was Thursday, so shopping day. I still remember telling my mum I feel fine - I don't know why I'm bothering with the test. That day they didn't have anything edible at BR Guest besides the so-called Southern Fried Chicken (if an actual Southerner ever tasted it, they'd sue) - I say that I might have savoured it more if I'd known what was coming, but it really wasn't very good.
So, I was feeling a bit tired, and decided to lie down, when the doc phoned me. Apparently, the blood test showed that I had a condition called (name I only really understood later), and I would have to go to hospital straightaway. Like, now. I just remember asking, stunned, if I would have to stay there, and he said yes, for a couple of days.
I was still in shock when I told mum, and went back to pack some stuff that I would need, but left a lot behind, because shock. I'd never been to hospital - all I can say is I'm glad it happened now with the new state of the art place. St Luke's was a nightmare.
She phoned him back to clarify some things, particularly that I would need to pick up the results of my blood test from St James first, and then off to Mater Dei. While I waited for them to get it, I had a lovely view of a group of assholes playing football against the walls next to St James (a fricking hospital). I cordially wished them dead, and still do.
And then, off to Mater Dei. Waited for an hour in the emergency room, and then more hours once I finally got admitted, before I finally saw a doctor. That's when the tests started - EKG, Chest x-ray, bloods taken, etc etc. Over the next 24 hours I'd have a CT scan and ultrasound, and have more bloods taken. And questions - endless questions about infections, new medications, etc etc.
Finally the diagnosis, in the exact words the doctor had used: Idiopathic thrombocytopenic purpura. There was a lot that I didn't know about it in those first days. That it doesn't go away in adults was one. That I could have died was another. Over and over it was explained to me that "idiopathic" means it arises spontaneously and the cause is unknown. I do get it - I got it the first few times.
It's an auto-immune disorder, and I'd very much like to know why my immune system has decided to destroy my platelets, which were at 0 when I was admitted. I think everyone was surprised that I was still upright.
But that wasn't the worst part. The worst part is that the cure (steroids) is rivalling the disorder for horribleness. I didn't know that steroids can raise blood sugar, especially for people who might be prone to diabetes anyway. So now, I'm following a pre-diabetic diet, which is playing merry hell with my stomach, or rather, bowels, because a person who's had IBS for 20 years doesn't do well on a high fibre diet. Sure, the steroids stop the diarrhea, but trapped wind is its own form of torture. There's the insomnia, the aches, the mood swings, the depressed immunity, the fact that first my knee turned into a daily ball of pain, and then I pulled a muscle in my leg just turning around in bed abruptly. Of course, I thought it was thrombosis, even though my legs are better than they've ever been. One panicked visit to the doc later, and leave in euphoria that it's "just muscular".
I mean, sure, my platelets are up. Hooray. I've lost some weight. Yay. Though my face looks like there should be astronauts landing on it and planting little flags. I'm terrified of getting sick and am drying out my hands with hand-sanitiser and wipes. I'm tired of people telling me I look well - I don't feel well.
I've been on steroids for one and a half months now.
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