Rheumatology Appointment – 30th November, 2017: Changes I wasn’t expecting.

I had a funny feeling that something was going to change or happen at this appointment, I’m not sure why, but the last time I had this feeling, my whole treatment plan changed. It could just be that I’m a superstitious person, but so far that feeling hasn’t let me down. Although the change is only minor, it was enough to irk me.

If I’m honest, I was already in an irritated mood, it was snowing with bitter winds. Which, I admit, sounds like a stupid reason to be annoyed but when Raynaud’s sets in and you can’t feel your own limbs, you get irritated. I think I made it worse for myself by imagining the things I’d rather be doing than trekking to the hospital in snow and winds.

There’s something about the waiting room which depresses me, either because it’s a room I’ll spend so much of my time in or because it’s a hospital waiting room – probably both. I sat and read a mind numbing celebrity gossip magazine until I was called by the nurse for the routine checks of blood pressure, weight and urine.

I was expecting all 3 to come back clear as they usually do, which my weight and blood pressure did but for the first time my urine did not. It showed positive for protein, something usually not to worry about but I have researched mostly everything you can about Lupus and I know that protein in urine can be an indication of kidney involvement. I asked if that was anything to worry about and the nurse told me that people can naturally have protein in their urine and there’s usually nothing to worry about. She wrote my details on the bottle, I assume the sample went to the labs for further testing.

I struggle immensely with figuring out what is significant enough to tell my consultant, there was 6 months in between appointments this time and I think it’s too long. I decided that the most significant issues were the two bad flares I’ve had since my last visit.

I started with the flare that was caused by a viral infection, the flare that resulted in a visit to an out of hours doctor. I mentioned that the doctor I saw had said I needed steroids to get the flare under control but I could only get them prescribed from my consultant. I wasn’t surprised to see my consultant look a little puzzled by that. He confirmed my suspicions that, if I need steroids, my GP can prescribe them.

I proceeded to tell him about the flare that was so prolonged that I thought it would never end, the flare caused by insomnia. I explained that I slept for 10 hours in a week. I told him my joints were painful and swollen, that I had headaches and pretty much any other symptom you can think of, he said no sleep for that length of time will do that to me. I have spoken to him about poor sleep in the past which he confirmed is all part of Lupus.

The appointment moved onto the usual questions, are you still having regular headaches? “Yes”. Are you still having joint pain and aches? “Yes”. Have you been getting rashes? “No”. Slight lie, I have but they don’t stay long and ironically after the appointment, I had two – both on my face.

One of the hardest things for me to overcome and it’s something that I’m still trying to overcome, is that I’m not a pain in the bum to doctors, family and friends. Which means, admitting that you don’t think your current treatment plan or dose is working as best as it should. Which brings me to the part of the appointment I wasn’t expecting…

Are you having more good days? “No”. Are they mostly bad days? A thought flickering through my head to be honest with the doctor trying his best to help, “yes”. There was a slight pause in the conversation and then he told me he would like to increase my dose of Azathioprine. He asked me if we should increase it to 125mg or 150mg. It’s was like he was asking if I wanted the small bag of sweets or the large bag. I was more in shock because in the past I was told the dose would more than likely never go above 100mg, and if it were to be raised, doctors would need to be cautious due to low TPMT test results. I shrugged and said “I’ll leave that decision to you”.

He raised the dose to 150mg and lowered my appointments to 4 monthly. He handed me a prescription, a blood test form and a form to hand to reception. As I was leaving he said the sentence that irked me “your blood tests are now fortnightly”. It had taken over a year to just get to the 3 month mark for blood tests and now I’m back to fortnightly. I know nobody is to blame, but it’s annoying.

I went to the hospital pharmacy and then on a hunt for the biggest bag of Maltesers I could find…I found a bag and I also found Toblerone and I’m yet to find a regret.

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The Daith Piercing: has it worked?

My conclusion regarding the effectiveness of the daith piercing is long over due, it’s been pierced for nearly 2 months. During that time, I haven’t encountered any major issues, in the last week it has felt a bit sore but nothing excruciating, more of a bruised sensation. I bought a bottle of TCP to clean it and it’s been fine since.

Since we’re on the subject of cleaning, I’ll state now that it has been a truly awful piercing to clean. You cannot see where you’re putting the cotton bud, which resulted in me getting annoyed with myself and having someone else clean it for the first week. I was told to use cooled kettle water and salt to clean it, I opted to use Epsom Salts rather than normal salt. I had to use the salt water for two weeks and cooled water alone for a further two weeks.

Healing wise, it’s doing well, a week after it being pierced, I totally forgot it was there which resulted in “oh shit, I need to clean my ear” moments. The piercer told me I wouldn’t be able to sleep on it for a while, but 2 nights into it being pierced, I was sleeping on it fine. It caused no pain or discomfort and in the first week, it bled once but it hasn’t since. Cleaning aside, it has been one of the easiest and pain-free piercings I’ve had. And for those wondering, you can still use in-ear headphones with the piercing.

But, has it worked? I’m pulling an ‘erm’ face whilst writing this bit and as you read on you’ll see why. In the first 2-3 weeks, I still had headaches but oddly enough, only on the right side and nothing on the left side (it’s the left side that is pierced). However, I then suffered a bout of insomnia which snowballed me into a long flare. The flare was so prolonged from my usual flares that I asked the question of “am I even in a flare or has my lupus just got worse? Can that even happen?”. The headaches started back up on the left side during the insomnia period, but I gave the piercing a pass because the headaches were the result of exhaustion. However, after being prescribed sleeping tablets and sleeping a decent amount, the headaches didn’t disappear and I’m still suffering some degree of a headache daily.

BUT, and this is why I’m sat on the fence, since getting the piercing, I haven’t had one migraine. I usually have at least 1-2 a month that can last days but it’s been nearly 2 months without one. Sure, I’ve had bad headaches but nothing that requires me to stay horizontal for days or makes me feel like I’m looking directly at the sun when there’s a light on. But, this could just be a lovely coincidence because if it’s stopping migraines, why isn’t it stopping headaches?

My conclusion is that it might be affective if you suffer from migraines alone. But, let’s be real, I have several auto-immune diseases, a piercing was a long shot if medications weren’t working. If you were debating the piercing, I’d still try it because what doesn’t work for me, might work for you.

For the sake of £20 I gave it a go. I have a nice piercing though, so it isn’t a loss or waste of time…every cloud has it’s silver lining and all that!

The Daith piercing: does it work or not?

I’ve been debating getting this piercing for a while. I’d think “yes, I’ll get it” and then I’d think “there’s no way a piercing could help headaches/migraines”. It does sound odd, a piercing alleviating headaches and migraines, but apparently it’s a pressure point, so it’s almost like having permanent acupuncture in your ear. During my research for it, I have found people claiming it has also alleviated their anxiety.

I’ve never been the kind of person who would wait for a piercing or spend time researching them. Through my later teenage years, when parental consent was no longer an issue, getting a new piercing for me was just a ‘fun’ thing to do. I don’t know how getting a needle through part of your body is classed as fun, but it was. I have gone through many, my nose was pierced around 6-7 times, I’ve had my tragus and cartilage pierced, my belly button and tongue. The only ones that are still remain pierced are my belly, tragus and tongue.

So why am I now holding out? Is it because my phase of spur of the moment piercings is finally over? Or is it because I’m genuinely skeptical that this will work? It’s probably a bit of both. It’s also not a piercing I’d say is ‘pretty’, if I wasn’t sick and didn’t have daily headaches I wouldn’t be contemplating it. It’s a piercing to me, that looks randomly placed – as if the wrong part of the ear was pierced.

I have asked fellow Lupus sufferers if they have tried it out, some saying it’s the best thing they’ve done and others saying it was a waste of time. I guess, its falls on the individual in regards to it working or not. I suffer from headaches nearly everyday, whether it be a normal headache, a pressure headache or a migraine. So, for my own curiosity I have decided to get it pierced.

I plan to get it pierced at some point next week and I will be writing a series of post regarding the effectiveness of the piercing.

(Also, please keep me in your thoughts because I have a feeling it’s going to hurt like a bitch).

I recently had one of my worst flares to date…

The start of August wasn’t great, my Lupus intensely flared up. I picked up a virus and due to that, it went haywire causing an array of issues. I’m late writing about this, it happened from Saturday the 5th of August to, well, now as I’m still recovering. You unfortunately don’t wake up one morning recovered from a flare, it can take days to weeks or even months to recover.

Friday the 4th, I was my usual self, maybe a little more fatigued than usual but nonetheless – nothing dramatically wrong. However, that night I slept dreadfully, I fell asleep around 3am but even then I woke every hour with a nauseous feeling. Every time I woke up, the sun was getting brighter and at around 8:30am I decided to just get up. I sat outside with a cup of tea and by 9:30am decided to try go back to sleep, as soon as I got into bed I was back up and vomiting. By 12pm I had vomited 3 times and had given up on sleep entirely.

Sunday the 6th. I woke up, from another sleepless night and feeling worse. This was the day my Lupus started to rear it’s ugly head. I was sat drinking water and I was almost certain I was about to faint, luckily I didn’t. But, I was shaking, my head was pounding, my joint pain was relentless and I started vomiting again. Just keeping my eyes open was exhausting and I couldn’t bare the thought of moving. I couldn’t even tell you what conversations I had and with who that day, I was so exhausted and in pain I can barley recall the day. What I can recall though, is it was the first time since my diagnosis that I rang out of hours for help. I was taking Tramadol and even though it dulled the pain, it wasn’t helpful and I was still suffering. They told me I had to see a doctor and on the way there I said to myself “I can’t be bothered with this illness anymore” because I genuinely didn’t have the energy to try and fight back. I wanted to curl in a ball, cry and honestly, disappear. Luckily, I was the only one in the waiting room so my wait was less than 5 minutes. The doctor took my temperature and it was raised, checked my ears and listened to my chest and they were clear. He checked my throat and he said it was red, he had me do a urine sample which was also clear and he checked my stomach which was sore as he pressed down on it. His diagnosis was a virus or the start of laryngitis, since the visit my throat hasn’t got worse so it was a virus all along. He couldn’t prescribe me anything stronger than Tramadol, so he prescribed me more to keep taking. After the checks and prescription were done he had a chat with me, he told me I need to get my Rheumatology appointment brought forward and told me that I really need to go on steroids. As soon as I heard the words “you need steroids but I can’t prescribe you them” I wanted the ground the swallow me. From the start of my diagnosis, I have been dead set against going on steroids unless I’m told I will die without them. I am yet to bring my Rheumatology appointment forward for the fear of being put on steroids.

This week has been rough. I’ve eaten next to nothing, my joints have been so sore and my fatigue just doesn’t seem to be improving – it feels like I’m at a dead end.
I try my very best to stay optimistic but this week has tested me, I’ve found it very difficult to take part in everyday activities and do basic tasks and I’ve felt extremely low in mood. I hate the thought of people thinking I’m snappy or horrible, I try my best to not be and it’s for those people I try my best to keep a smile on my face. My mood is slowly improving but I’m still struggling with a lot of pain, aches, headaches and nausea, but thankfully I haven’t vomited since Friday.

It’s the first viral infection I’ve had since being put on immune suppressants, which is good going as I have been on them since November. I was told I would more than likely constantly catch viruses and bugs. And, because of my lowered immune system it’s taking longer for me to shift it.

I can only hope that I start to properly improve this week. This has probably been my worst flare to date.

Misconceptions about Lupus.

Lupus is a poorly understood illness and when you're on the poorly understood territory, a few misconceptions happen. This is because the people who know about it are a minority compared to those who don't. The main point about this blog is to not only share my journey with Lupus but to also educate people about the illness. I have decided it's time to write a post about these ridiculous misconceptions, so here are 10 cleared!

1. You will NOT catch it.
It's not the common cold. It's impossible to catch it. Lupus is not a special strain of invincible bacteria, it's a majorly confused immune system. So next time you're in the company of a Lupus sufferer, shake their hand, or give them a friendly hug and maybe even share food. I can guarantee you'll leave as healthy as you came.

2. Lupus is NOT cancer.
I can see why people believe this one as chemotherapy is sometimes used to treat Lupus. But, you'll be glad to know, it's definitely not cancer.

3. Only women can get Lupus.
It is more common in women so maybe this is where the confusion has stemmed from but men can also suffer from Lupus.

4. Women with Lupus can't have children.
Although we will be classed as a high risk pregnancy and have an increased risk of miscarriage, women with Lupus can indeed carry to full term and have a healthy baby.

5. Lupus is easily diagnosed.
It's not a case of visiting your doctor and walking out an hour later with the diagnosis. There isn't a singular test to confirm Lupus so testing can go on for months to years with countless blood tests, questioning and physical examinations. It isn't a diagnosis given out easily and it's an extremely exhausting process to have to go through.

6. It's not real.
How could an imagery illness have the power to do so much damage? Everything we feel is real, Lupus is 100% real. Ask the scientists who research it.

7. We will get better.
There is research going on but there's very little funding for Lupus research so unless the scientists have a eureka moment, we will remain incurable.

8. Lupus is uncommon.
The NHS website even states this. Although most of the people you know are probably healthy, Lupus is not as uncommon as you'd think. Don't get me wrong, it's not the most common illness to have but in my opinion it's not as uncommon as they make out.

9. Lupus is deadly.
20 years ago only 40% of Lupus patients were expected to live more than 3 years following a diagnosis. Although we can still experience complications, we now have a normal life expectancy.

10. We brought Lupus on ourselves.
False. Although many believe Lupus is brought on by certain lifestyle choices, this is not true. We haven't brought it on ourselves. If this was the case, don't you think there would be more people with it and better funded research?

I think I can speak on behalf of most Lupus sufferers that if you ever want to know anything, just ask us. We'd rather you get the correct information and who better to ask than someone who lives with the illness?

Does Lupus hang over you like a dark cloud?

People have asked me “do you ever feel depressed?” and I reply “no”. The months that followed my diagnosis, my GP frequently asked “how are your moods?” or “do you feel low?”. Truthfully, in the beginning, I did feel low, but isn’t that expected? I was diagnosed with 5 auto-immune diseases – none curable. I still told him “no”. My low mood was not depression. I used to think to myself are people waiting for me to crack? Now, I realise that people just cannot fathom it happening to them and their first thought is “I’d get depressed”

When I sit back and think about it, there’s absolutely no reason for me to depressed, I can’t think of one thing in my life that would justify me being depressed. You might be thinking “is she serious?!” but, yes I’m serious. I have the most wonderful people around me who catch me when I fall. I have a roof over my head, food, water, clothes and I’m not laid in a hospital bed clinging onto my life. Yes, I have bad days – days I ask a God I don’t believe in “why me? What did I do wrong?” and days where I think “this is it, today is the day it finishes me off”. But, I get through those days with the help of my family and friends and I stand back up, ready to face it again. So, no, there’s no reason for me to depressed. 

People ask me “are you okay?” and I reply “yes” each time I’m asked. Sometimes it’s visibly clear that I’m not okay, but my answer will always be yes. I think that’s due to stubbornness, if I say “no, I’m not”, in my head I’ve let it win for that day. I might not look like I’m winning, but I am. 

Does Lupus hang over me like a dark cloud? No. No it does not. I treat Lupus like a game, hence my ‘winning’ reference above. So far, I’m doing great, I’m in the lead. You have to be one step ahead of it, but every so often it’ll gain a lead and push me off the board completely, but I will always climb back up and laugh at it as I regain my winning position. It’s a tough game but it’s a game I have to play, a game with no end. In my mind, I’ve painted a picture of what Lupus looks like. It’s huge, both by height and width, black and cloudy figure. I guess I did that so I could have a visual of what I was up against. I can safely say, I’m not scared of it or what it’s potential is. 

If I let this horrible black figure hang over me, I’d be screwed. I will never cower behind it, but I’ll always be stood in front of it, waiting for it to make it’s next move on the board. 

Lupus and being abroad: diary entry 4.

This post is going to be a mixture of how I’ve been the last few days. Like I said in a previous post, I’ve had fairly equal days in terms of being good and bad. However, I have noticed in the recent few days my days have almost been split, I’m fairly good in the morning and I quickly decline by afternoon. The temperature is rising as the days go on and the breeze is slowly withering away to nothing. There usually is a breeze in the morning hours but it seems as it gets to 1pm it suddenly stops, and returns at late afternoon/sunset. This means by afternoon I’m typically under the parasol or cooling off in the water. 

I have noticed I’m affected more when my head is directly in the sun. Which is where a sun hat comes in handy, the downside is the hat makes my head sweat and can make me feel worse, it almost gives a sense of over heating. 

I thought I was doing well on the rash side but on a morning walk earlier this week I developed one. I was in Turkey in 2015, I was in limbo with getting a diagnosis and I developed a rash on my chest, just next to my shoulder. The rash I developed this earlier this week was in the exact same place. At first it didn’t bother me, in fact I hadn’t spotted it, my mother did whilst we were in the sea. But, as the day wore on, it started to itch and it became hot. The heat from it could of just been my skin in general as my shoulders were slightly red but my Lupus rashes are generally hot to touch. The rash was slightly raised, it lasted longer than I anticipated, a day and a half. I kept applying factor 50 and Nivea Soft cream. I always find Nivea Soft soothes Lupus rashes, I didn’t think ahead to pack it but luckily the little shop in the hotel sells it. 

The rash on my left shoulder/chest.

I thought my sleep issues would have settled during the holiday, with being in the sun and around the sea but they haven’t. I usually sleep on my right side but last night I couldn’t lay on it. I had pain in my right hip, like stated, I sleep on my right side so I kept reverting back to it and being awoken by pain. It wasn’t just last night that brought poor sleep, most nights have been restless, just like at home. I woke up feeling very achy and a bit out of sorts so I had a late start, I just sat in bed munching on biscuits (Milka biscuits are delightful, they’d be even nicer with a brew though) and strolling through the internet.  

As the holiday goes on I am starting to struggle more. I’m becoming increasingly fatigued and starting to have an ‘unwell’ feeling, again, it’s a feeling I can’t perfectly describe. But after all, I’m no longer designed to be in the sun, I’m not meant to be sat in it, people must honestly think I’m mad for being here and in a way I totally am mad but you can’t say I haven’t tried it. Mum overheard a woman on the beach yesterday saying she declared Lupus on her travel insurance – so it’s not just me putting myself through blazing heat and putting myself at risk of dire symptoms. Maybe madness is a trait we develop when diagnosed? If I flare massively when I return to British soil then so be it. I’d rather flare with decent wifi, my dogs and Netflix than here, when I’m meant to be enjoying myself…if I do flare as soon as I land at least Lupus has the decency to hold fire until the holiday was over. 

I’ve reached the second week, all in all I think I’ve done well. Yes, there’s been bad days but there’s also been fairly good days. I’m still enjoying myself, which is the whole point of the holiday. But, I must go because I’m bloody red hot and need to get into the sea. 

The wifi is co-operating with me today so here is some pictures! 

Breakfast yesterday: a waffle with Nutella, fresh strawberries and ice cream. At least there was fruit, right?
A little feline friend I made on the beach last week.
Mum and I one evening last week.
The view I had writing my previous post.