ANTI JO-1 – MYOSITIS – ILD

After 3 weeks of achy joints and swollen hands, I thought I was developing arthritis so I went to see my GP. We tried antibiotics for a couple of weeks and then steroids... but I was still unwell and began to have chest pain... Two days later, on a Sunday morning, I woke up unable to breathe...

I knew something was extremely wrong as I was gasping for air... I asked my husband to drive me to A&E for the first time in my life whilst my 15 year old daughter did an amazing job of calming me down and helped me breathe slowly all the way to the hospital.

I was seen straight away and before I knew it I was having a cardiac arrest and an oxygen mask was put on myface and a catheter was fitted. My CK was near 3000...Eight hours later I was transferred to ICU Cardiothoracic where the oxygen mask was replaced by the excruciatingly painful CPAP mask. The alternative would have been a tracheotomy.
After 3 days in ICU (quarantined and still with the CPAP mask on) I was no longer critical, I was transferred to a Respiratory Infection Controlled ward. I woke up to find out that I was 100% dependant on oxygen and I could not walk! I had to relearn to breathe and to walk 4 weeks later.

It took 5 days of testing day and night (numerous X-rays, blood tests (veins/arteries), CT scan, ultrasounds, lung function tests, EMG, full body MRI and a muscle biopsy) before I was diagnosed with MYOSITIS:

-Polymyositis (PM)

-Dermatomyositis (DM)

-Idiopathic Inflammatory Myositis (IIM)

-Interstitial Lung Disease (ILD)

-Anti Jo-1 Positive.

My rare condition is now called Antisynthetase Syndrome with Interstitial Lung Disease, Anti Jo-1 positive. I stayed in hospital for a total of 6 weeks! And I was discharged from the hospital with emergency oxygen for home use.

At 41 I still looked the same on the outside but I was disabled... No one believed that I was sick! I had no prior history or warning of this rare disease and it is not hereditary.

At 44 nothing much has changed apart from my lungs are slightly worse than last year because I had 3 major relapses, the latest one being 26^th April 2012 (another week in hospital).

I am on 15-25 pills a day which includes steroids, immunosuppressant drugs, nebuliser, oxygen as and when required, chemotherapy every 6-8 months which destroys all my B cells (good and bad) and keeps me alive but also renders me prone to infections like E.coli, pneumonia and frequent chest infections etc...

What has changed? My lifespan has been shorten, there is no cure at present for this disease, this is a lifelong condition, I lost my job, I cannot walk normal pace, walk fast, run, exercise, dance or drink etc...

In one word I cannot exert myself or my breathing will deteriorate rapidly... I cannot laugh out loud, eat fast, drink fast or I will choke. I cannot lift a full kettle of water or lift a saucepan...

However, I believe I was given a second chance for a reason so I am enjoying every single day as much as I can. I like having young happy people around me and hear them have fun and listen to their laughter echoing all around the house... I like helping people and being happy with my little family especially my wonderful Golden Retriever Amber and our new kitten Luna. I refuse to spend time on negativity or with miserable people!

I want to do well with the rest of my life and think about good projects and accomplish them all one day at a time. I like to help good causes and that includes helping my friends young and old. I also do voluntary work for my good friends Clare and Gina at https://www.facebook.com/pages/Ginare-Consulting/178893315476764 as Clare supported me a lot through my battle against Lambeth Council whilst trying to save my job...

However, today is time to give a little back as I have had my 3^rd round of Rituximab which cost an awful lot of money. I would like to fundraise £3000 for Rheumatology Consultant, Dr. Patrick Kiely, Clicnic C / Infusion Treatment Room.

My wonderful nurse Sister Janis has been looking after me for nearly 3 years now and she has always made me feel comfortable and totally relax during  my 5-7 hours infusions. The clinic still needs new IV pumps system and furniture. And as I speak Sister Janis does not even have a desk to write on, a clock or a fan in her newly furbish infusion room.

NOTE:

Click on the GREEN button on the right hand side to make a donation of $1 or more. You do not need a PayPal account to use PayPal. If you would rather pay by debit / credit card, simply select that option on the PayPal payment page. You will also need to enter an amount in $ so here is a guide for you:

$5 =£3.16

$10 = £6.31

$15 = £9.47

$20 = £12.62

$25 = £15.78

$30 = £18.93

$35 = £22.10

$40 = £25.24

$45 = £28.40

$50 = £31.56

$55 = £34.71

$60 = £37.87

$65 = £41.02

$70 = £44.18

$75 = £47.34

$80 = £50.49

On the 23/05/2012 I received an amazing donation £,2000.00 from the Swire Charitable Trust thanks to a lovely lady called Yvonne and Mr. Michael Todhunter!

Thanks a million in advance for all your generous contributions which will go towards my future care, safe environment and wellbeing...