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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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, Babies and …….Vegan?

Hi Guys,

First I just want to say thanks for all the messages and feedback I received after my first post. I loved sharing my story with everyone and it was great to meet others who could relate. Please leave comments, follow and share my blog. Also please ensure you’re following my twitter and instagram pages @lupus_gurl .

So on to my next topic…..

I want a baby.

I got married in the summer of 2013 and since I have been married everyone asks me, “so when you having kids?”, “where’s the babies?”, “what you guys waiting on, start a family”. To be honest they’re the most annoying questions because I do want children.

Now those who really know me will be kind of shocked because well…children don’t really like me hah! Seriously I get scared when I hold them! I’m not good at the cute, baby talk thing and to be honest I think most babies look the same till their at least 1 month old. However I want nothing more than to have my own family. I want a little mini me that I can push around in an overpriced buggy and have people tell me how cute she is and me tell them, “she so good, hardly ever cries.” We’ll have family picnics and we will go to Butlins and when they’re really good I’ll surprise them with a trip to Toys R Us. I have it all planned but unfortunately I also have Lupus.

So on the 6th of March 2015 I had an appointment at The Lupus Unit in Guys Hospital in London and told them exactly what I am telling you guys.

I want a Baby.

The doctor asked me when, I said well maybe end of the year. He said that was a good time frame from now, which was great, but then he wanted to discuss the issues.

I’m going to break down exactly what he said to me. We discussed the following:

Fertility: Lupus does not make you infertile. Yay!

Flare of Lupus during pregnancy: 30%-40% of all Lupus patients have a disease flare up whilst pregnant however this can be controlled with increase in steroids.

Timing of pregnancy: The safest time to get pregnant is during a period of remission, when the symptoms are under control for at least 6 months.

Medications during Pregnancy: All my current meds apart from Ramipril (controls blood pressure) are safe to take during pregnancy.

Antiphospholipid antbodies: I tested positive for these antibodies ( sticky blood / prone to blood clot ) which means an increase in chances of miscarriages and late pregnancy complications but current meds should help lower risks.

Lupus Nephritis:  This is Issues with the kidneys which is what I have and can bring on complications in pregnancy such as preeclampsia.

And last but not least, I have Anti-Ro and anti-la antibody positive: The possibility of delivering a child with neonatal lupus/ congenital heart block. The baby could been born with lupus rashes on their body. Increased risk by 1%- 3%.

He then told me I will need to stop my Ramipril and come back in 6 months time to see him. If I continue making progress he will agree its safe for me to start baby making. At least that part will be fun.

I left the hospital not knowing how to feel. How I stopped myself from breaking down in the hospital I will never know. I just kept thinking about what could go wrong….

But then I said to myself that Lupus is not going to beat me. I’m meant to have the little girl ( or boy ) and the trips to Butlins. I am going to have a child, I will survive my pregnancy and my child will not have Lupus.

I refuse to let Lupus dictate my life. I know I talk about it a lot and call myself Lupus Gurl but I talk about having Lupus because there is not enough awareness about it, not because Lupus controls my life. I also talk about it because since my diagnosis I still live my life, I still go out and I still work full time and I still achieve things a healthy person achieves. I want to show other people that Lupus does not have to win! You could read this and think, damn you got it hard but I know people who have it harder. I will find a way to overcome Lupus.

So that brings me on to my next point.

IM VEGAN.

Since the 2nd of March I have been on a Vegan diet. No meat, no fish, no dairy. I know what you’re thinking, its only been like 2 weeks, but I’m Black and I haven’t ate MEAT, FISH or DAIRY for over 2 weeks; that’s like a lifetime mate! I’m also cutting down on alcohol, I’ve had none so far in March. The point of this is to see if natural foods will help to heal my body. A vegan diet is supposed to have a lot of health benefits such as increasing energy, lowering cholesterol and its full of anti-flammatory foods. For example I eat wholegrain rice, bread, lots of green veg and fruit. There are some treats, for example this evening I’m treating myself to strawberries dipped in organic dark chocolate (No milk). It has actually been a fun challenge. So far I haven’t really felt any different though but I’ll let you guys know how I’m feeling by the end of the month and if I’m going to stick with Vegan diet for the near future.

Remember to share your comments and thoughts and if you are vegan or have another diet I can try, let me know!

Until next time…Bye

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