**NEW HOME!**

Hi All!

I hope you are all well, sorry for the lack of posts lately.

I've been working on a new home for my blog and I am so pleased to be able to say that it is ready! Please go and check it out, give it a share and a subscription!

New blog page: http://positivelylupus.com

Thank you so much for all your love and support! Xx

Winter is here!

To Embrace, or Fight the Cold?

Hey there, sorry it’s been a while. Can you believe it’s nearly 2016 already!

It’s been a hectic few months for me since being back in the UK, keeping busy with follow up appointments, university and allowing my body to adjust to non-sushi life. Priorities are hard to get straight when everything comes at once, unfortunately this blog has been at the end of my to do list. 

Updates: Finally, I have answers regarding my foot issue (or rather feet now that both are feeling the effects). Following the MRI scan, results have shown inflammation in the joints of my feet that is most likely caused by my good friend Lupus. Being back in the UK has helped with this as the cold weather reduces swelling, my foot was especially bad from beginning to end in Hong Kong. Though I was prepared (with plenty of Celebrex!) as I knew what I would be up against as the swelling would only get worse in the heat like it did in Barcelona. My only option was to soldier through as best I could, I cannot thank enough those who helped me on the days I really couldn’t walk, you know who you are!

There has been a tug of war going on for me with the cold weather, while it helps with inflammation it is an annoyance in other ways. Since it’s winter now, I thought I’d share with you what Reynolds actually looks like, it’s quite crazy looking and affects my toes as well as my fingers. For those who are unsure, Reynolds phenomena is a condition that affects the blood supply to certain parts of the body and is triggered by cold weather, anxiety and stress. I have secondary type Reynolds, meaning that it is caused by an underlying condition i.e. my Lupus, with no symptoms of Reynolds until probably 1-2 years after my diagnosis, at first I thought it was something that would go away over time but I guess it’s here to stay! It takes about 30 minutes once back in the warmth for the blood to return fully and my hands to look normal again. Crazy right, that your fingers and toes can go so long without blood, then return back completely normal like nothing happened. The first time it happened to me I was freaked out, I thought I would have lost feeling or damaged some nerves but to my relief it was fine. 

Honestly, recently I’ve been feeling the effects of my condition more. After reflecting back on the year from Pericarditis, to limping around the whole year and waking up stiff almost every morning, I don’t remember feeling this bad in the past. I decided to raise concerns with my specialist who agreed as my bloods have been on a rollercoaster this year. Mycophenolate does not seem to be cooperating very well with me, so I will be changing one of my medications to Methotrexate which will hopefully be better.

2015 has presented me with an abundance of memories and experiences that I am truly grateful for as it has taught me a lot. Blogging is becoming a peaceful way for me to sit down, relax and let myself out, I enjoy writing and I hope you enjoy reading. My ideas for 2016 are ambitious and I have exciting plans which I hope to carry through, I will try to post more frequently but I hope you understand - final year is not easy haha! I wish you all well and have an awesome new year, spread the positivity, love and festivities, put that phone down and cherish these moments with your loved ones,  I know I will be.

Much love xX

Travelling Alone!

Travelling with Lupus

Hey there :-) ! I’ve been trying to find inspiration for something to write about, and since I’m currently abroad I thought this would be a perfect opportunity for me to share my thoughts, worries and struggles along the way. 

Having a chronic condition like Lupus is definitely a tough journey, even when at home surrounded by your family & friends. So can you imagine the decisions that needed to be made, whether or not it is the right choice to then leave your comfort zone and travel 6000 miles across the globe, alone to work in a city where you’re not even sure what your condition is called in that language. If anything were to happen within the two months of being here, there could be insane consequences. As with Lupus, anything could happen. The thoughts and worries that crossed my mind almost made me reject this amazing opportunity.

I am currently in the beautiful city of Hong Kong, a place where the sun shines so bright and the heat could just melt me. My first and foremost biggest worry was the sun, now I absolutely love being outside and getting a tan, but when you’re supposed to avoid sun light - it’s a bit hard to enjoy. Sunlight is one of the most common triggers of a flare up, meaning I must wear SPF50 and carry about an umbrella! In a place like Hong Kong that’s pretty acceptable so it’s not so bad….but I couldn’t imagine carrying around an umbrella anywhere else (outside of Asia), when the sun is beating down.

In the past 5 years of having Lupus, I’ve not really had any flares until this year (2015). For some reason, this year I’ve had a few (pretty serious) incidents happen to me, rendering me unable to walk, lie down, breath, straighten my arm and so on. If this is the year for my Lupus to play up, it is probably the most risky time for me to leave the UK and travel somewhere so far away for an extended period. I would say I am a very optimistic person and am full of positive energy, that is what keeps me going through all of this. So far everything has been fine, apart from this weekend just past my foot became swollen again and I couldn’t walk at all. There was a throbbing pain bursting through the veins in my foot, just like how it was in Barcelona - damn it happened again. The pain was so bad that I ended up having to hop around as any pressure or movement of my right foot was unbearable. Thankfully I was with my lovely aunt this weekend and she kindly took me to see an acupuncturist the next day since I’ve been limping around the past month or two. However I was actually too weak on that day to have it done, so I am due for my first session this Wednesday (05/08/2015) - I’m so scarred!

There are a lot of other worries that have gone / are still going through my mind, but there’s nothing that can be done. Lupus is so undetectable and so unpredictable that you just have to be prepared and accept when something happens, making the best of what you have got.

So far, the experience at work and in Hong Kong has been awesome, I do not regret one bit about coming here. It has been well worth the risk so far and if anything were to happen, I am ready for it and have accepted that something may well happen no matter how many precautions I take. No matter how difficult it is, I'm sure I will survive through it. Pain is only for the moment, you just have to live with it as best you can and not let it tear you down. I am actually scared of a lot of things, but that fear makes me want to do it even more, enabling me to face things head on.

Returning back to the focus of my blog; staying positive is definitely the best way to live your life, although it may be hard to do so, try your best. It will lift your spirit, and in turn have a positive effect on your health. This is truly what I believe and it will help you stay sane & happy! Be enthusiastic about life, face your worries & fears and you will go far.

I will be updating you soon on my acupuncture experience! Speak to you all soon. 

Much Love xX 

My Journey with Lupus

My Lupus Story

I am only 21, look about 16, but my body feels like it’s 50. Welcome to my lupus life. 

Hi all!

My name is Ruby, and I would like to share with you my lupus story. I decided to start a blog about my journey with lupus. I hope to spread awareness of this condition and help those who are struggling with lupus, especially for those who are young, afraid and need a sister to turn to. The reason for my URL and blog title is that us people with lupus need positivity in our lives to help us stay strong, and this is what my blog is designed to do.

Prior to my diagnosis, my immune system was amazing. Any fevers, flus or colds I contracted would be gone by the next day. I barley took any sick days off school, was always full of energy and positivity, I loved sports (and still do) entering many competitions in badminton, rock climbing, athletics etc. Cuts and bruises would heal in no time, medication was unknown to me…I felt like superwoman! All of this was perhaps a little too good to be true.

Systematic Lupus Erythematous (SLE) is a chronic autoimmune condition, whereby the body’s defence mechanism attacks and inflames the healthy cells, tissues and organs. Currently there is no cure, only medication to suppress the immune system, stopping it from tearing ourselves apart from the inside. Symptoms can range from mild to life-threatening, affecting the skin, joints and internal organs. The cause of lupus is still unknown, though there are a few suggestions that may make people more susceptible to the condition. I am indeed of Asian origin, a woman and of childbearing age, thus making me at the centre of those who are prone to this condition. I believe what “triggered” my lupus was stress, the stress of exams together with the recent loss of a very close uncle of mine, though I cannot confirm if this is true.

I was diagnosed almost 5 years ago. It took a couple of months, I was in and out of my GP’s surgery, every week she would send me home with paracetamol telling me it was nothing to worry about. My fingers were swollen, I had a bright pink “butterfly” rash on my cheeks, I could barley brush my own teeth or open the car door, something was so obviously wrong. No one believed the pain I was in, the hurt I was feeling until I couldn't bear it anymore. I felt like no one understood, or no one would believe me, which in turn caused me to doubt myself. Was I overreacting? Was there any need for the severity of my complaints? It wasn’t until my dad really pushed my GP to do a blood test that they realised there was something majorly wrong. I was officially diagnosed in March 2011, at the age of 16, during my first year of A-levels. This was the turning point of what would be my life, for the rest of my life. You see, lupus isn't just something you have, it becomes a part of you that will not go away, the main thing is not to let it define you.

I was in school, specifically in art class, when my mum called to tell me I had been asked to come into hospital and to pack my things ready for a couple nights stay. My feelings at the time were neutral, chilled, it didn’t really hit me yet. I got to hospital, had my own bed with a TV and the doctor comes over and tells us that I have Systematic Lupus Erythematous (SLE). My feelings after that? I don’t think I had much of a reaction still, I was just like… “Ok”, I think mainly because I didn’t understand it or even know what it was. The next few months was a blur, consisting of many hospital visits, blood tests, drips, and a lot a lot of medication, one mainly being a type of steroid known as Prednisone. This made my face incredibly big and round, giving me what they call the moon face, I’ll insert a photo for you!

Here is a pre-steroid photo....

After....

My symptoms at the beginning were: extreme fatigue, rheumatoid arthritis, abdominal pain, malar rash, low concentration levels. This was particularly hard to deal with as I was still in school, trying to achieve the best I could despite being constantly dragged down by these factors. My fatigue and low concentration affected my performance in class, joint pain restricted my writing ability and my rash and moon face made me extremely self conscious, especially when going out in public.

Since then, I have gained a few more symptoms and had only one “flare” so far (luckily).

Flare 1: I was diagnosed with having pericarditis in February 2015, right in the middle of my second year at university. I was unable to breath without pain, climb stairs without getting breathless or even walk a short distance. Lying down was a definite no, meaning that I had to sleep in an up right position. Painkillers, a lot of rest along with loving family & friends got me through this unbelievable pain that I had in my chest and in my heart which lasted around 3 weeks.

Symptom 1: Reynolds phenomena, this is a condition whereby my fingers and toes turn white and numb due to the cold weather, stress or anxiety. My feelings towards this? I hate it, words cannot express how annoying and frustrating it is. For me, it is triggered all year round, more so in the winter, and when it happens I am unable to feel for things in my bag, press the unlock button of my car, type on my phone...I basically can’t feel what I’m touching. I wear gloves most the time I’m outside, though it doesn’t help too much.

Symptom 2: Stress fracture, this is due to the dosage and length of time I have been taking steroids. Steroids weaken your bones over time. Most recently I have not been able to walk without pain as it has affected my foot. It has not been properly diagnosed yet as I only went for an x-ray yesterday, however I have been in pain walking for the past 3 weeks.

Though my symptoms are not very severe, being that my condition is only a mild case of what can happen to someone with lupus, it still affects my life a lot. For that I am extremely grateful and forever empathise for those whose condition is so much more extreme than mine. If mine is so bad, I can only imagine what it’s like for others.

How am I now? 

^ So this is me now guys, I would say I’m quite a chilled, happy-go-lucky person and live life as it comes. Having lupus has never really gotten me down or changed my perspectives in life in a negative way. Of course I’ve had my moments where I think - why me? But I guess there is nothing I can do about that, I just carry on living. I believe everything happens for a reason, staying positive and not using lupus as an excuse is key to moving on and making you a stronger person. I don’t go around moping about my condition or bring it to surface when someone else is complaining about something mild like a cold, because, what’s the point? Negativity will get you no where, it will only bring you and the people around you down. In fact, not many people even know about my lupus even though it has been a part of my life for almost 5 years.

Living with Lupus has its difficulties on a day-to-day basis that people do not realise, this is what I would like to spread awareness about. It is often overlooked and unknown to many the true feelings of those with SLE. I may look healthy and seem upbeat & positive on the outside, however 9 times out of 10 I am actually in physical pain inside. When I go out to eat with friends, even simply picking up the glass to take a drink may be painful for me, though no one knows this. I don't think I even remember what it's like to be completely pain-free, it's just so normal to me now - like I said, it has become a part of me. Rheumatoid arthritis and fatigue are the main problems I battle with every day, most days I wake up stiff, it's a challenge to even get out of bed sometimes. Walking hurts my knees, grasping objects hurt my fingers, sports hurt my joints, work exhausts me, Reynolds restricts my actions, but I carry on living life how I want - within reason & with extra caution of course.  

The key to living with lupus is:
1. You must remember to always look out for your health, any changes in your condition must be reported immediately to your doctor. The longer you wait, the worse it will get - trust me, I know from experience. Being the laid back person I am has its faults, often if something is wrong I will brush it off thinking that it will fix its self, until I realise I waited too long to get medical attention, and then I’m stuck in the hospital again for longer than what would have been needed.

2. A good support system of people who understand and will always be there for you through thick and thin is greatly needed.

Luckily I have a loving family, amazing friends and a boyfriend crazy enough to stick by me. They are here to support me and join me along this journey, I hope I can spread this positivity with you all. Until next time! 

Much love xX