So… I had Chemotherapy…

Hi.

It’s been a while. The last time I wrote a post was 2016! It’s weird because so much has happened, I don’t know where to begin or what to really say. So I will try and summarise 2017- present day.

End of 2016 I had a hospital appointment, on my birthday might I add, I was called in to see to see the professor and not one of the consultants so my mum came with me. I was then told I had some kidney inflammation that was very concerning. That same day me and my mum went to the library to get some books, and by the end of the day I decided to become a vegan.

Jan 2017 I started following a vegan/plantbased diet. I actually got better, lost weight and life was good.

However fast forward to end of 2017, and I started experiencing severe stomach pain. We thought it was IBS but after many tests and a camera down my throat, it became clear one of my meds was inflaming my stomach; Mycophenolate.

Jan 2018 I went to Thailand for 3 weeks however when I get back I start getting sick. First a tooth infection, then a chest infection, plus my stomach pain only got worse.

Fast forward to May 2018, I’m not feeling great but as usual I push through. I go to Ibiza for 3 nights as planned with my sister and friend but by the 2nd day of the trip, my joints are aching, I’m bloated and tired plus I still have my stomach pain. I stay in bed whilst they go out as my fingers and legs have started to swell. On my flight home from Ibiza to the UK, I realise my legs and feet are swollen and everything feels tight, I didnt know then, but I also have a temperature.

When I land back in the UK I go straight to work but my colleagues notice there’s something wrong and urge me to call 111. The operator tells me to go to hospital.

I get to St Thomas hospital and my blood pressure is through the roof, I am so swollen I can barely walk. They tell me it’s my Kidneys. I now see the Kidney specialist and they want to do a biopsy on my kidney to check what damage lupus has done to my Kidneys. My blood pressure is so bad I am put on two different blood pressure tablets. Did I also mention I gained around 1 stone in less than 2 weeks because my kidneys were not filtering properly?!

So I eventually have a biopsy and my doctor calls me when I am at work to tell me Lupus has affected the kidneys more than they thought. They tell me they need to use stronger medication. They mention a drug called cyclophosphamide and tell me its my best hope of saving my kidneys before more damage occurs. I say yes straight away but the doctor urges me to research as there are many side effects. So I sit at my work desk and look up cyclophosphamide…it’s a form of chemotherapy.

I am pre-warned it can not only effect my fertility but also my bladder. I pray on it with my family and by June, I start my treatment, 6 sessions of a low dose (I think I was on 500) chemo every 2 weeks over a period of 12 weeks.

Does it make you sick: yes. Did I lose hair: no more than what I lost already. Does it give you headaches: yes. Do you lose weight: I didn’t. Is it worth it: at present, yes.

I ended my treatment in September but 2 weeks later I was back in hospital experiencing a bad flare, looking back I think my body was just reacting to having such a harsh drug.

So by November 2018 the kidneys are improving but my Lupus is still active so I am asked to explore another option.

Fast forward to present day and I have now started another drug under a clinical research trial, the trial is called BEAT Lupus. I will be on this trial for 12 months.

See I told you alot has happened!

I feel like I will need to do seperate posts on Lupus nephritis (lupus of the kidneys), Mycophenolate, cyclophosphamide, BEAT Lupus, depression/stress and anxiety, Work/Life Balance and also following a plantbased diet as I am only giving you a very quick life update right now.

This post is just basically saying, yes I still have Lupus, yes I am still trying various things to get myself into remission. Yes, I am staying strong.

Thanks

So… I had Chemotherapy…

Lupus and keeping it all together

Hi Everyone,

I know what you’re thinking, I thought she stopped this?! This was one of the reasons why I was not going to start a blog in the first place, I’m terrible at keeping to my own plan/schedule. I admit I procrastinate and get very easily distracted. I pushed blogging to one side for some unknown reason, which funnily enough ties in very well with today’s blog theme; I struggle with keeping it all together…

To get you all up to speed, last year ended on a high, I was told I was in remission, given the go ahead to procreate, I had just signed up for an evening college course and I was starting a new weight loss plan (body coach, you may have heard of him). I was all set and 2016 was going to be my year!

Now fast forward a couple months to February/March and I was not in a happy place. WORK was ruining my life. I was so unhappy, my body would actually shut down on a Sunday night because it knew I would have to enter that dreaded place of work the next day. I was under an undue amount of stress and I felt alone and hopeless. So I really focused on my weight loss plan, I lost 7 pounds in 2 months plus inches off my arms and chest. I was exercising every morning before work and even went to the gym. I also did really well in my college course, I was the only student to never miss a lesson and I also gave in all my work on time 🙂 *Teachers Pet*. 

As I started feeling better about myelf I knew I just had to get myself away from my job, it was mentally draining. I went away to Mauritius in April for my friends wedding and during that time was offered a new job with a different company which I accepted straight away! In fact I emailed my resignation letter to my manager whilst I sat sipping on a pina-colda! However then my new job became my main focus, so in true Rachel fashion something else had to give so I stopped doing my weight loss plan completely! Sounds silly I know but I literally stopped doing my meal prep and exercise.

Fast forward to today, I’m currently at home after tearing a knee cartilage, I’ve gained back all the weight I lost 😦 and I’ve been swelling up again, particularly in my hands. However I am actually happy in this job, its not stressful just demanding, sometimes I’m not getting home till 8pm after leaving the house at 6.50am. Im staying late at work and my husband will cook as my joints will start playing up by the time I get home.

My life is not all doom and gloom, I’m happily married, good job, close family but I don’t understand why I can never be happy in all areas of my life at the same time.Like why do I find it so hard to keep balance and keep it all together? Cant I just enjoy my new job, lose weight and manage my lupus altogether at the same time? I really struggle, its like one or the other and I just find it all soo draining. I can’t cope with all the juggling. Maybe I just can not cope with adulthood…I dunno. My health is my main priority, but also so is my home, my marriage, my faith, my finances, my sanity! I’m not sure if its a chronic illness thing, but I just get so worried and so frustrated that things are not going right, I suppose I feel I should be getting everything right by now….

I dont want to make a promise that I will blog more…I do these things on a whim, but as usual I’m keen to hear other thoughts and comments. How do you find your balance?
Until next time …

Snapchat: Lupus_gurl, Instagram: Lupus_Gurl and Twitter:Lupus_gurl

 

Lupus and keeping it all together

Amber’s Story ( EDS, Intestinal Failure AND Tachycardia ) Written By Lupus Gurl

I wanted to do something a bit different in this blog post. So for once it’s not about me or Lupus!

I’ve actually been meaning to write this for a while and I was going to write this story in my words, when it dawned on me, this is her story so you can read her words.

First a bit of background, earlier this summer I went on a fantastic holiday to Turkey with my husband and met some great people, including a beautiful young lady called Amber. Now looking at Amber you would think she looks great, she’s energetic, friendly; you would never guess that she is ill or in pain. That’s until you notice the tube attached to her. Amber was more than happy to talk to me once I told her about my struggle with Lupus. The more Amber told me about her condition, the more I kept thinking, THIS HAS TO BE SHARED.

For over 5 years, not only has Amber been severely unwell, but no one knew why, until 2013 when she was diagnosed with the rare condition called Ehlers Danlos Syndrome other wise known as EDS which has lead to Full Intestinal Failure with Tachycardia. She is a strong and determined woman, I fully salute her!

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Now let’s hear for her: AMBER’S STORY

I was a normal healthy 16 year old girl, going to college with no worries, when one morning I started vomiting A LOT of BLOOD. I was taken to the hospital where they carried out blood tests and scans but everything came back normal, so I was sent home. I carried on vomiting blood for months, it first started out as twice a month until it was every morning. I kept going in for tests and they would all came back normal, I ended up losing my job because I was so ill in the mornings. My life would never be the same.

So now I’m 18 and in constant pain. I went from weighing 8 stones to 13 stones, and even began fainting. I was living by myself and one day my Dad popped over and found me dressed and on the floor, I had been there for almost 2 hours unable to get back up. I didn’t think it could get much worse but this carried on for another 3 years with all the tests saying nothing was wrong and I was completely normal. But I’m vomiting daily and still gaining weight, how can this be normal?

Then in September 2012, I started losing weight, great, that by February 2013 I had lost nearly 6 stones, not great! I was now 21, had lost my teenage years being ill and I was determined to get answers. However I wasn’t expecting to get the results that were given to me.

I had gone from 13 stones to 7 stones within months, and the doctors didn’t know what to do, which by now I had learn’t to deal with. They put a NG feeding tube into my nose and a pick line into my arms so I had some sort of food going into me. After a week of testing the doctors still said everything seems normal, they couldn’t see why I was being sick. So guess what they asked me??!!! “Amber do you have a problem with food?”. I couldn’t believe they was asking if I had an eating disorder. Heeellllooo, just ask anyone, I am a foodaholic! I was horrified from that moment onward; I lost all faith and trust in doctors right then and there.

I went home after 4 weeks of feeding with a PEG (flexible feeding tube) in the centre of my stomach. I was so happy to be home, because I met someone!! Unbelievable I know, but through all the madness and my floppy and wobbly skin and not to mention the giant tube in the centre of my body, I met Marc over Facebook.

The PEG wasn’t working, it kept moving its self in my stomach cutting the inner wall and lining, so guess who had to go back to hospital… that’s right me. I didn’t want to go, I wasn’t ready and I thought Marc would leave me.

In the hospital it was noted that my veins were terrible, in fact they would just burst and collapse. A few days later the doctors asked, “Does anyone in your family suffer from lax ligaments or double jointedness?” My eyes lit up, finally some hope, it just so happened my mum had just had a operation on her hips because she has a “ligament” problem. I said ” Yes, my Mum, she is currently in hospital having a operation because of it” Then the doctor said the 3 words that would change my life “Ehlers Danlos Syndrome”.

They asked me to do things like bend my fingers back, bend my thumb to touch my wrist, touch the floor with your hands keeping your knees straight all sorts. I always thought that all these things were normal, I have always been flexible and done weird movements with my hands. So they sent me to St Marks for genetic testing, this involved them taking skins samples. It had taken 6 years but I had an answer, EDS. It is basically a rare condition that makes everything stretchy, the last answer I wanted, but an answer all the same.

Next I was told I had full intestinal failure which meant, sometimes my stomach worked and other days it doesn’t. I have no control over it and because of how long I have been ill, it has affected my bowel and my bowel has become baggy. I no longer absorbed any food through my gut or colon. I also don’t poop, in fact I’m lucky if I poop once a month.

So the lovely doctor came around pulled the curtain and sat on the bed, you know when they sit its going to be bad news. “Amber it looks like you will be on TPN (total parenteral nutrition- food through drip or needle) for at least 10 year+, I want to move your line from your arm to your chest and make it more permanent “. I could not believe this, I was 22 and being told I was going to be fed through a tube for the rest of my life!!!!

I was in hospital for 7 weeks this time around, Marc and Mum had moved Marc in as a surprise for me. I knew I had a long way to go but I was getting there.

When I got home, I had nurses twice a day, my life felt pointless and I felt like I was letting Marc down. I didn’t want him to ever see me ill. Then one day when Marc was at work I made an attempt to over dose. I was miserable, all I wanted was to be pain free and the only time I was, was when I was sleeping… it seemed like a the best idea. I woke up to Marc walking in from work, and seeing nothing had happened, I carried on as normal. It wasn’t just physical pain, this illness was mentally killing me. So I made the decision to train to be able to disconnect and re-connect my self to the TPN without any Nurses, I needed my independence back.
I started to take control of the situation, I started to feel happy again and I was able do more things. When I passed the training everything got better, I was even keeping my weight up. We were going out more, planning trips and just simply living life. I have now moved house, passed my driving test and now I do modelling every now and again. I’m 23 and have been on TPN for a year and a half and I have been a steady weight .

The pain is still not under control, I’m currently waiting to hear from University College London Hospital to have a Ketamine Infusions as well as Steroids with anesthetic injections into my stomach nerves. We have tried all sorts starting with Morphine, Lidocaine Infusions, Nerve Blockers into the spine and hypo therapy. I’m not going to lie; the pain is ridiculous some days. I often just cry because there is no other out let. I am going to Cognitive therapy and it is helping and now I have techniques that help when I have really down days. I’m still working on trusting Doctors again but I’m sure one day I will.

Thank you for reading my story to learn more please read below.

Ehlers–Danlos syndrome (EDS)

Is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen This is the collagen of granulation tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Commonly associated with keloid formation, Reticular fiber, Also found in artery walls, skin, intestines and the uterus.–COL3A1.) The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. There is no cure for EDS, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems.
Intestinal Failure

Intestinal failure occurs when your intestines can’t digest food and absorb the fluids, electrolytes and nutrients essential to live. Intestinal failure is most often caused by short bowel syndrome, a problem that affects people who have had half or more of their small intestine removed due to injury or surgery to treat conditions such as trauma or mesenteric artery thrombosis. Intestinal failure also may be caused by digestive disorders, such as Crohn’s disease or chronic idiopathic intestinal pseudoobstruction syndrome, which causes the bowel to malfunction.
Tachycardia
Also called tachyarrhythmia, is a heart rate that exceeds the normal resting rate.‪[1]‬ In general, a resting heart rate over 100 beats per minute is accepted as tachycardia in adults.‪[1]‬ Heart rates above the resting rate may be normal (such as with exercise) or abnormal (such as with electrical problems within the heart).‬‬

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Amber’s Story ( EDS, Intestinal Failure AND Tachycardia ) Written By Lupus Gurl

Lupus and Why I Can’t Seem To Get Healthy PLUS Vegan update

Hi Guys,

So summer is over and autumn has definitely arrived, did you guys see all the rain at the end of August?? Madness.

So today’s blog is a brief post about the new choices I have made in my life. Well its not a new choice, its kind of an old choice if we look at my past posts.

When I first started blogging, I was vegan; but did that even last a month?? I have to admit, it took one piece of chicken one day and I fell completely off the bandwagon. I don’t know why because I actually felt good. I won’t go as far as saying I was healed but I won’t say it made me feel any worse. But to be honest, did I really test it out long enough?

Also when I first started blogging I mentioned I wanted children. Well someone asked me the other day, “when are you having kids?” and straight away I said, “who knows..maybe never.”

Whats happening to me? Why do I keep giving up?

I am a moaner. That’s pretty much all I do, just ask my husband. I complain and moan all the time. I complain about my current situation but I’m not the best at improving my current situation. I’m the girl who just sits down and bitches about it. My sister is always like, if you don’t like your weight, put down the ice cream…but its not that simple, is it?

I looked back at my previous blogs and well they all pretty much say the same thing, I’m not happy with the way I look and I am not healthy etc.

So I have been doing A LOT of thinking, researching and studying about HOW TO GET AND STAY HEALTHY and I have decided I am going to change.

The 1st September 2015 was my first day of change. I want to be able to say by next September that I am the healthiest I have ever been. That means changing my diet and actually doing some form of exercise.

The point of this post is that I just want it out there.  I AM CHANGING. I am going to improve my current situation, no more whinging, no more moaning. If I don’t like the fat on my belly, I’ll burn it. If I hate been unfit, I’ll exercise. If I want children, I won’t be scared, I will have them. I’ve let my self down because I know there is so much I can achieve and I just let other things get in the way. I am putting myself first.

I will be keeping you all up to date of the highs and the lows.

Wish me luck.

Please remember you can follow me on TWITTER: lupus_gurl  SNAPCHAT: lupus_gurl and please, share, like and comment on my blog: lupusgurl.wordpress.com

Lupus and Why I Can’t Seem To Get Healthy PLUS Vegan update

Lupus and Faith, why I pray……… and always will

Hi Guys,

Can I just say I have been loving the Spring weather. Spring is my favorite season, its a period of change, everything gets brighter, leaves begin grow, the flowers are colorful and going out is no longer a daunting experience. Its exciting, as you know Summer break will be coming and that means BBQ’s, Carnivals and Bank holidays. Spring brings hope…… and so does Faith.

I recently read that 48% of the population of China consider themselves to be atheists. For some reason I couldn’t get this out of head  all day, that’s basically half, half of the largest population in the world do not believe in anything. I thought about how much my own faith has enabled me to get through Lupus and I thought about those who have a Chronic illness and do not have a faith.

Personally for me, God has helped me through my difficult times, when I’m down, I pray; when I’m happy, I pray. I pray for healing, I pray for protection, I pray for LIFE.  After a good prayer session, I always feel better, like a weight has been lifted off of my shoulders. I put my future in Gods hand instead of worrying about how I am going to handle it all alone. My faith also gives me something to look forward to, I know that when I eventually pass I will be going to a place that I cant even fathom, I know that I will be with God and his angels and be the happiest I have ever been. No illness will effect me, I will never feel depression or hurt, even as I write this I get butterflies in my stomach.

Now I know there are many out there that say I am wrong. There is no God and religion is man made. However when you are ill, having a religion I believe does more good for you mentally than harm. It gives you reassurance and peace. You believe that things can and will get better. Not only that, some of my favorite conversations I have ever had, have been with God. I don’t understand why someone would be hell bent on proving me wrong than simply seeing how happy having a faith makes me.

A doctor once said that since getting into to medicine he stopped being a atheist and believed in God. Why? Because he had seen so many miracles, unexplained healing and the only thing that each patient had in common was their belief in God and prayer. Sometimes you don’t believe till you see it for yourself. I believe in miracles and I know God can heal me. I also think he wants me to share my experiences good and bad to give hope to those who are hopeless and give faith to those who are faithless.

I almost didn’t post this as I started to think it could attract negative people but this post ain’t for you. It’s for anyone who is going through a struggle and thinks there is nowhere else to turn. It’s for those who feel alone and think no one understands. It’s for those who have never said prayer but wonders if they should. It’s for those whose faith has been knocked as they have experienced pain and suffering. Keep faith and hope alive, I do and I always will.

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Thank You

Lupus and Faith, why I pray……… and always will

Lupus and Relationships…. Lovers or Carers?

Hey Guys,

I’m so happy to be writing again, I’ve had such a hectic few weeks but finally I have some time off work and can write a new post. I’ve been wanting to discuss this topic for some time as I feel it comes up regularly in the ‘Lupie’ world.

Lupus and RELATIONSHIPS.

I am going to focus on romantic relationships in this post but I know Lupus can effect relationships with friends and family too but I will do a separate post on this.

I’ve had various conversations with people who have been diagnosed with Lupus and everyone has had very different experiences with their illness and the effects on their relationships. Many relationships have become strained as the partner starts to feel more like a Carer than a Lover.

Let me just remind you of some of the most common symptoms of Lupus:

  • Joint Pain
  • Fatigue
  • Skin rashes and Hair Loss
  • Migraines and Chest Pain
  • Prone to various Infections
  • High Blood pressure

There is also one more common symptom: DEPRESSION

Personally I think that depression in Lupus is not discussed enough. When you’re constantly sick and in pain, especially with an invisible illness like Lupus, you feel that no one understands you and you feel very alone. You also feel like giving up sometimes, I know when my pain was at its peak I felt so worthless, I just kept thinking all I had planned in life was slipping away. I remember saying to God, ‘if this is the end let it be now just so the pain would go away’. My partner had to watch all of this, hear all of my screams and prayers, I didn’t realise at the time he probably felt just as alone and helpless.

In the peak of my flare he had so much to handle……

  1. Loss of energy: I slept for more hours than I was awake, I couldn’t stay up till late or it could bring on a flare. The sun wore me out so summer days were tiring instead of fun.
  2. Weight loss: I’ve never been a slim girl, I’m 5’2 and always a size 12 – 14 but at the peak of my flare, I was buying size 8 dresses. My husband preferred the curves, he didn’t think I looked like me anymore.
  3. Depression: Always sad and upset, I preferred to stay in than go out. Then a low libido plus I just didn’t feel attractive especially when I started losing hair and getting rashes on my legs and arms.
  4. Mobility: Moved my bed downstairs into the front room so I wouldn’t have to climb stairs. I needed help to go to the bathroom and even get dressed if I was in too much pain.
  5. Medication: The side effects of steroids and constant painkillers wasn’t good for my body or my moods.

We were young and loved going out and having fun but once I was diagnosed I spent most of my day in bed, popping pills and being in pain. This was a true test to our relationship; should he stay or should he go?

I know after speaking with others that Lupus has led to break ups and divorces. Men and women not being able to cope with the changes or able to handle the patient and carer dynamics of the relationship. Others I have spoken to have been afraid to get into relationships in the first place, scared to have to explain their illness and its flares, scared of rejection and being hurt.

Why should this illness control our body, minds and hearts?

I believe everyone deserves love and even if you do not get it from a man or woman you will always have it from God. Do not settle for an abusive or loveless relationship just because you think your illness will never get better and you are unlovable. There are good men and women out there, why should you not be loved and treated well? Make sure you love yourself, I had to first accept the condition I had, learn how to manage it and gain a happier state of mind before I could I could make another person happy. Acknowledge that your partner will find it difficult, they have needs and even though they don’t have your symptoms, they will feel the effects. I had to look at the ways I could support my husband, I always asked about his day and even when I weren’t in the mood, I still got dressed up before he came home from work or made a nice dinner. I show him and tell him I am grateful, I love him and he is worth a lot to me. I also do things for myself, I don’t want him to feel like my 24 hr carer. I let him have a life, he can go out with his friends and enjoy himself knowing I will be ok. Days when I’m feeling good we take advantage, we go out on dates, go on a day trip or out for a drink. We communicate, I give him a chance to say how he feels and I listen and take it on board. I don’t blame him when he gets stressed and annoyed. Now don’t get me wrong I’m not saying this has been easy, we have been together over 8 years and I’ve had Lupus for about 6 of those years. What I am saying is he was worth fighting for, I refused to let Lupus kill my relationship. What I am also saying is there are understanding people out there too, don’t let Lupus make you give up on love. To those that have a supportive partner already, cherish them.

Please feel free to comment, like and share. I would love to hear other view points on this topic. I have more to say but don’t want to go too overboard.

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Thank you

Lupus and Relationships…. Lovers or Carers?

First Blog! – My Lupus Story

Hi Guys,

This has pretty much been a long time coming, I’ve decided to start writing a Blog!

For those of you who don’t know me, my name is Rachel and I have been diagnosed with Lupus. I was diagnosed 2 months after my 21st birthday in February 2010 with Systemic Lupus Erythematosus (SLE), Discoid Lupus (Affects skin and hair) and less than two years later was also diagnosed with Lupus Nephritis (Affects the kidneys).

No it doesn’t run my family and No I hadn’t heard of lupus before.

I was around 19 years old when I started feeling different. I would go on a night out with friends and the next day my joints would be stiff or swollen. I started eating less, I had no appetite and I was losing weight without trying. My hair started falling out and I was tired, like all of the time! As my symptoms got worse I saw different Doctors who had all different reasons for my joint pain; my birth control weren’t agreeing with me, my diet, not getting enough rest, drinking and partying too much! I heard it all. One day after searching online, I diagnosed myself with Rheumatoid Arthritis and marched straight into my Dr office and told them and you know what? They agreed. No tests, they just said ok and put me on medication. Of course it didn’t work.

I then started getting rashes all over my arms and legs and chest and at first I thought I was allergic to something but as it got worse again I went to the Dr who told me it was Eczema. Eczema! I had never had it in my life and the Dr said, “you must have but don’t remember”, so gave me a cream for dry skin and that was that.

Things got worse after my 21st, I had a huge party and couldn’t move for 3 days afterwards as I was swollen all over. By then I had had countless infections including urine, ulcers, tooth infections. I looked terrible, I had to take a break out of uni during my final year, I wasn’t working, no motivation, no sex drive. I was miserable.

One day the Dr invited me in for a chat and explained to me that after looking at some of my blood results they think it may not actually be Arthritis, erm no sh*t Sherlock! They wanted to refer me to the rheumatologist at the local hospital. However I would have to wait roughly 6 weeks, at the same time as he was speaking, my mother called me and I told her what he said. Straight away she booked me in with a private hospital that same night to see a rheumatologist and in 40 minutes, yes 40 minutes, I was diagnosed with SLE and admitted in to hospital that same night.

It took over 2 years for me to be diagnosed and I was only diagnosed so easily because by then I had so many different symptoms. Whilst I was relived, I was scared this was new to me. I looked up Lupus and read about miscarriages, organ failure…..death. I’m a firm believer in prayer but at this point, prayer just seem worthless.

Since being diagnosed with Lupus I have taken, steroids (prednisolone), Hydoroxychloroquine plaquenil, ibuprofen, co-codamol, tramadol, azathriopine, mycophenolate mofetil, asprin, Rituximab and methotrexate. I’ve also had B12 shots, taken iron tablets and I take Vitamin D and Calcium. I am now only on some if these but I’ll save my medication journey for another blog.

What I want to say is now 5 years on from being diagnosed, I graduated with a 2:1 degree in English Literature and Creative Writing, I have a full time job as a Employment Advisor for a large charity, and I support long term unemployed people into work. I married the love of my life in 2013 and I’m in the mist of purchasing my first house. I battle with Lupus still and but I live and I actually live a good life. I feel a lot better now and I want to share how I do it and connect with others who go through anything tough.

There’s a way to live you life and be happy.

Thanks for reading.

Rachel

Lupus Gurl

First Blog! – My Lupus Story