Lupus warrior

One of the biggest questions I get asked is “What is Lupus”? So this blog entry is dedicated to just that….

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In November 2000 I was diagnosed with systemic lupus erythematosus (SLE) by Professor Graham Hughes at  St Thomas hospital . Normally when someone gets a diagnosis like this they are upset, but I hugged him because for 14 years I’d had to deal with doctors treating me as if I was making things up, misdiagnosing me with anorexia because I had up to 20-30 mouth ulcers and I couldn’t eat and had dropped to 5 stone… They thought the ulcers were caused by me not eating rather than the other way round… They thought I was allergic to cheese, so I stopped eating cheese…They thought my headaches were caused by sinusitis and gave me 2 sinus operations… So being told I really had something wrong with me that was causing all these horrible symptoms was a relief even though most of the information gave me a prognosis of 10-15years…. 

Lupus is an autoimmune illness and in basic terms my immune system sees everything in my body as alien and that it should not be there, so rather than look after my body, during a flare my immune system goes on a rampage and attacks my body causing things such as:

Mouth ulcers
Being tired all the time
Feeling like I had the flu
Achy and painful joints
3 under 12 week miscarriages
19 week gestation stillbirth
4 live premature births at 25, 33 weeks and 2 at 36 weeks
Bells palsy at 15
Brain fog
Bad headaches

Inflammation of my gall bladder ending in an emergency cholecystectomy
livedo reticularis or as I called it corned beef legs.
Emergency admission to hospital for bleeding ending in a hysterectomy
Fluid build up around joints in my hand ending in a ganglion removal
4 Emergency admissions for esophagus pain needing morphine pain relief.

Since my diagnosis I have tried lots of medication from injecting myself every day with heparin and being on warfarin, however now my daily medication consists of Hydroxychloroquine to help my joints to not get inflamed, ADCAL calcium due to low bone density, Tramadol for pain relief  and Prednisolone steroids to suppress my immune system… The only trouble with forcing my immune system to not attack my body, is that it also cannot not fight off infections… Getting a cold for most people is fine, they can deal with it, however for me it can mean pneumonia and a hospital visit with strong antibiotics…. 

Even though I have Lupus, it doesn’t define me and I will not let it beat me… 

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Sometimes though I can be too stubborn for my own good. When I am not in a flare or crash as I call it,  I push myself to do more.. This is a catch 22 because it can then lead to a bigger crash…

Being a student nurse is hard enough without Lupus…  I still have brain fog which means it is extra hard for me to unpick essay questions or indeed to write essays or complete exams… However I am lucky that my tutors are aware of my Lupus and have taken the time to understand it and it’s effects… 

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So that’s my Lupus in a nutshell….If you or someone else you know either suspects they have Lupus or have been diagnosed with Lupus and you need someone to talk to, or even if you just want more information on how Lupus can be managed, please do email me on melaniebourner@gmail.com

For more help and information on Lupus, please click on the links below 

St Thomas hospital Lupus clinic

London lupus centre

Lupus UK sufferers

Lupus family group

Lupus warrior

More help and support associated with associated illness and conditions can be found on the links below:

APS support UK

Hughes APS support

Fibromyalgia/ME support

Hysterectomy sisters

Stillbirth and Neonatal Deaths FB group

Stillbirth and Neonatal Death charity

Bliss – For babies born premature or sick

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