I’m no longer a patient at paediatric rheumatology. I’m not sure how to feel! I need to have my blood pressure checked every year and bloods taken every two years and that’s it. Just keep taking the plaquenil and go back to my GP if anything gets worse.

Ehh. 

Which is only a good sign, I think.

On another note, I thinking of deleting this blog. It helped to whine and moan when things were bad but now I’m not going through a rough patch it’s kind of bringing me down. I feel like I should keep all of you updated, but I don’t want to think about Lupus when it’s not really affecting me that much.

I’m going to make the most of this good spell and hopefully it will last. If I do decide to delete, I’ll occasionally post Lupus-y things on my main blog, if you’d like to continue to read about it. I just don’t feel like I need somewhere to vent just about Lupus now.

It just dropped like a stone really suddenly and now I’m sat here sipping water and cradling my aching head.

I need sleep.

Over the past few months, whenever I go out to eat (or order takeaway) I would start feeling ill a few hours later. It’s mostly nausea and I assume that I’ve eaten too much, but my butterfly rash shows up really dark, I get horrible headaches and I often find myself with the runs too (hi charlier, enjoy the TMI!). We cook from scratch at home, so we generally don’t get any additives or chemicals in our meals.

However, I know when we go out a lot of the food probably has artificial colourings and flavourings and I’m wondering if this could be what’s making me feel so sick after going out. Tonight I had chicken tikka masala and it was bright orange so, chances are, there was some colouring in there. I felt fine until about 3 hours after finishing my meal and now I feel sick to my stomach, I’ve got a headache and my joints are really painful. It’s happened enough times now for me to stop thinking it’s a coincidence and realise it’s probably something more but the thing is, I have no idea where to start with finding out what it is that makes me feel ill.

If anybody could give me any help with this, it’d be much appreciated. I can’t deal with feeling this bed every time I eat something I’ve not made from scratch. Any ideas?

I’ve had a great few weeks, I’ve needed hardly any painkillers and my rash has been gone and I’ve honestly never felt better. I had sinusitis about a month ago but any Lupus-y symptoms seemed to disappear with it, which is good!

However, I’ve got a hospital appointment next week and my doctor wants to take me off my medication. All of it.

Before plaquenil, I was on sulfasalazine. When I stopped my sulfasalazine, I ended up in hospital a week later. I don’t want to stop plaquenil because it’s worked so well for me and I don’t want to go back to how I was before. I’ve had to increase the dose recently but guess what? When I increased the dose, my symptoms improved again. I guess I’ll give it a try but fkjglfksdjglkfsg I don’t want to.

I quite like this period of remission, thank you, and I’m worried stopping the medicine will end the remission.

itwaslupus:

(BTW, I will eventually get around to all the major necessary Vitamins/Minerals but I want to start with those most frequently tied to Lupus because, well, this blog is about Lupus)

To start, Vitamin D, unlike Magnesium, is found in very few foods and is mostly absorbed through the sun’s rays.  Which is why many people with Lupus often find themselves at a disadvantage in maintaining healthy levels. 

The function of Vitamin D that you are likely familiar with is that it is essential for Calcium absorption.  So, when your D levels go low, so will your Calcium, which will lead to brittle bones. 

But you might not know some of the other functions of Vitamin D.

Vitamin D has other roles in the body, including modulation of cell growth, neuromuscular and immune function, and reduction of inflammation [1,3,4]. Many genes encoding proteins that regulate cell proliferation, differentiation, and apoptosis are modulated in part by vitamin D [1]. Many cells have vitamin D receptors, and some convert 25(OH)D to 1,25(OH)₂D.

You see what I’ve highlighted for you, fellow sickies?  That right there is why we need to pay attention to our bodies. 

Now, like I mentioned earlier, Vitamin D is not found in many foods.  If you find yourself in a deficiency, or are trying to avoid one, your best bet is taking 1 Tablespoon of Cod Liver Oil a day.  I promise, there are brands available that will not taste like shit.  Other than that, Salmon is the best source.

Reblogging for future reference. My vitamin D levels are always low when I have blood tests.

I’ve not posted here in a while ‘cause I’ve been sick. It was my year 13 leavers’ dinner just over a week ago and afterwards a bunch of friends came to stop over at my house. One of them had had a cough all week and that weekend I started to develop a cough. 

My chest was really, really hurting but I figured that it was just all the coughing making the costochondritis hurt more. I had 4 exams last week so I tried to carry on but by Thursday I was feeling really ill. The cough and the chest pains were gone an it was more like a cold, but the symptoms were amplified a million times. I spent most of the day in bed. It just kept getting worse and I thought maybe it was sinusitis rather than just a cold. 

I woke up this morning feeling a ton better, but then after lunch my chest started hurting again and the cough was back. I’m really congested too and the cold & flu medicine hasn’t helped. I’m feeling feverish as well and my mum took one look at me and told me to go back to bed.

I don’t know if it’s just my friend’s infection kicking my ass thanks to lupus or something different but it has happened at the worst time. I have one last exam on Wednesday that I know literally nothing for and I’ve not been able to study for more than 20 minutes at a time because I just can’t concentrate. These exams are kinda really important too. If I don’t pass, I have to stay at school for an extra year rather than going to university. Not only do I really really not want to do that because I can’t wait to get out of that school, but if I don’t go to university this year it’s going to end up costing me £9000 a year because the tuition fees are going up.

Basically, this whole post is just me whining, like usual. (But seriously, this bout of illness could end up costing me £27000, so yeah. This is me whining.)

ageing-superhero:

My day:

1. Felt terrible, looked terrible
2. Realised it’s one of my best friend’s 18th birthday party tonight
3. Dragged myself there, had a good time, drank diet coke all night
4. “Whipped my hair back and forth”
5. Blood pressure dropped
6. Got dizzy
7. Fainted
8. Was presumed to be drunk
9. Went home

I’m now sat on my bed feeling so sick. Even though my parents know I never drink, I did joke about getting really drunk before going out tonight. I know if they realise how bad I feel right now, they’re going to think it’s alcohol. Inevitably, this will lead to the “I hope you’ve learned your lesson, you won’t drink that much again will you?” talk.

I only took £6 out with me, I came home with £3.50. Not sure how drunk you can get with £2.50.