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Starting a blog

Ok, so I’ve started a blog, I’ve become one of those people! My reason for doing so is to keep everyone updated. Living with a serious chronic illness can be pretty tough, sometimes I’m sweet to talk about it and other times I want to pretend there’s nothing wrong and just get on with it.

So here it is, my story….

12 months ago I was working in Papua New Guinea. Life was grand. I was having a ball. One morning at work I suddenly couldn’t write. My hand wouldn’t function.  Anyway, I didn’t give much thought to it because I was exhausted. We were working long hours, in extreme heat and humidity and I figured I just needed more sleep. At the airport on the way home, it happened again. I couldn’t fill out my passenger information card. I was writing like a four year old. Probably worse, I think my four year old nephew, Tom could write better.

I saw my GP a few days later after Clint noticed me walking funny. An MRI the next day showed a massive tumefactive (looks like a tumour) lesion in my brainstem and another smaller lesion in my spinal cord. The next few days I deteriorated rapidly, I couldn’t see out of my left eye, my left arm wouldn’t work and I had great difficulty walking. Then, the vomiting started.

It’s hard to explain real fatigue to people unless you’ve experienced it. I couldn’t do a lot without a nap. I had to think about walking. I had to tell myself what to do, what comes next. How to put one leg in front of the other.

So, I was diagnosed with multiple sclerosis. What a shock?! No one ever thinks this will happen to them! But…. Ms was a pretty good diagnosis and I accepted it fairly quickly. Hey, it was better than a brain tumour, or lymphoma. A few words I heard doctors mentioned that made me quiver. I was given the names of some medications, my homework was to go home and research them and think about what might be best for me.

Four months later, I met my specialist at the neuroscience research centre. I went in armed with knowledge and well researched, keen to start my new disease modifying drugs for ms.

Unfortunatly, my latest scan showed a small brain bleed. My lesions were still very active and I hadn’t improved like a should have. My lumbar puncture was completely normal, all my bloods were normal. I was then told I dont have multiple sclerosis. What a blow! Who thought not having ms could be bad news?! They had no idea what was wrong with me. What was my prognosis?

In may the vomiting started again. I was vomiting every morning and night for 2 months. My life became a juggling act, I had to plan activities around my vomiting. How fun! I started steroids in June. I blew up like a balloon and never slept. But that was ok, the vomiting stopped.

in October I experienced a relapse. I lost all sensation to my arm and again came the vomiting. Again, steroids helped the vomiting but made me sleepless, red and bloated. My MRI showed generalised swelling in the spinal cord.

My specialist finally gave me a diagnosis. He said nueromylitis optica (aka devics disease). Almost a year on I was excited to have any diagnosis. This is an aweful disease that will mostly likely leave me wheelchair bound or blind within 5 years. We talked treatments. Mostly, chemotherapy which I have accepted. Chemo will hopefully prolong the time before the next attack. Unfortunately I will probably be on this for the rest of my life. I wanted to go back to having ms! Ms sounded manageable.

Yesterday, I saw another specialist for a second opinion. This specialist doesn’t believe I have nmo, but can’t tell me what has caused all this! He thinks I should start chemo anyway… probably… maybe 🙂 He believes this is an autoimmune inflammatory demylinating disease ( I know, big words!) which has been quite catastrophic and without chemo I will almost certainly end up in a bad way. He will discuss with my specialist at the research institute to come up with a plan that works for me.

good news is, functionally, I am so much better. I can write again! And i can see again! And recently I have become able to run again and ride my bike 🙂 i can’t talk highly enough of the physiotherapy I have been doing twice a week.  I dont know where I’d be without it. It’s hard to even think about how my body was before compared to now and I truly believe the improvement in me physically is because of hard work and Scott the physio at inner focus physio.

So, that’s where I’m at, a lot to think about. A lot of big decisions to make. I’m lucky, my relapse could have been a lot worse. And I’m lucky to have Clint, my family and some amazing friends helping me through this journey. I can’t begin to imagine going through this without them. They know who they are 🙂

so, it’s a long start to my blog. Please read it, inform yourselves. Google the big words. It’s hard sometimes, explaining it to everyone and understand that sometimes it’s too much or too overwhelming to talk about out loud but I appreciate the support. 🙂

peace out

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15 thoughts on “Starting a blog

  1. Shelley says:

    Thanks for sharing, Jess. I’m glad you’ve become one of ‘those’ people who blog. I’m always wondering what your latest news/diagnosis/treatment is but don’t want to annoy you by asking all the time. I’m very proud of you sis and love you to bits xxxxx

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  2. Alison says:

    Way to go Jess! I know it isn’t the same but I can relate to some of what you’re going through and it’s a tough one to explain to people. So proud of you for giving it the finger!!!

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  3. Thanks for the blog! I think of you often and can’t even begin to imagine what you must be going through. The past year sounds pretty shitty…very shitty! Your are such an optimistic person and I admire your courage! Keep on keepin’ on buddy!! xoxox

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  4. Katie says:

    Hey Little Cuz,

    Thank you for taking the time to share your story with us. I think of you so often and wonder all the time what the hell is going on over there. I will be reading every word and every update and sending you all my love and support. You are an inspiration. Stay strong. Xx

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  5. Joe knight-Smith says:

    Hey Jess, thanks for sharing this. Great courage and we are thinking of you. Anything we can do up here just holler. Look forward to following your progress.

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  6. Louise Morgan says:

    Well Jess, that pretty much puts it all in a nutshell – a nutshell I would dearly love to crush and make it all go away. I admire your strength and courage to fight this head on and we are with you all the way. Thank you sincerely for sharing your story on this blog. It’s perfectly OK to not want to talk about it and explain over and over so this allows those who love and care about you to follow your journey without incessantly asking questions you don’t feel like answering. I wish there was something, anything, I could do to make it better for you. Always in our thoughts. Big hugs. Love Lou and Russell xo xo

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  7. Hi, I had a dreadful 3 years with misdiagnosed MRSA on my knee that eventually ‘ate’ through the knee and I needed a complete knee replacement. Before I could have that done I had to get rid if the golden staph which included a Picc line and oral and intravenous antibiotics. My hair fell out, I was bed bound as I couldn’t even get to the bottom of my bed I was so sick, my skin peeled off and I felt like a snake shedding it’s skin. Needless to say my immune system was totall impaired. I have felt so ill for the last 3 years until about a month ago I was introduced to the Paleo diet. I can’t explain how wonderful I feel now, food really is medicine. I would heartily advise you to look into this. Here in Australia a fabulous chef Pete Evans has a site where he shares amazing advice from many different areas and is always interesting. My hope this might be if help to you especially the myelin sheath problem the high fat (good fat) may be of help. Regards Jackie

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  8. Sue Metcalf says:

    Hey Jess
    Learning about your challenges with those damn lesions just makes me respect you all the more- and I already had a healthy dose of respect for what you have done in your life! Blogs are great .. One to let us all know where you are at – and when you have beaten this “whatever it is ” a fantastic reminder of how you did it! We all believe in your strength of character so when the crook days come – come lean on us. Love you x

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  9. Kaz says:

    Thanks so much for sharing Jess!! What a fantastic idea and u truly are an inspiration!! Look forward to reading more and keep smiling… I love your attitude. 🙂 xx

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  10. Vanessa says:

    Hi jess well blogged I have had Devic’s for 3years now and have have many relapses and I am a registered nurse nothing like a nurse having a rare disease, I can tell you my hospital is well aware of the disease using me to train up and coming doctors a Hahahaha and having a sense of humour works to beat this disease.Ever day I wake up I laugh at the weird things my body can now do hahahah hang in there and like me you will learn to work with the little weird things your body can now do it’s what makes us special. Ever need a chat drop me a line xxxx keep well Vanessa

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