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Up’s and Down’s

FullSizeRenderSo, time for an update I’m told. It’s been a few weeks of ups and downs. Unfortunately, I had a cold and gastro over the festive season. Turns out, that when I get a virus, I get what’s referred to as a pseudo relapse.  This is where symptoms of the disease flare up because of the virus, but thankfully no new lesions develop. As a result of the pseudo relapse, I have lost feeling in both feet. It is improving everyday. Originally I lost feeling to my right leg completely. While this loss of sensation is very annoying and at time frustrating (stumbling and falling coz I don’t know where my feet are), it’s not the worst thing that could happen and I am thankful that I didn’t lose any motor function. Of course, with this pseudo relapse came more vomiting, which I am still having at times and I have to plan my day around knowing I will be sick in the mornings and evenings. I lost my grandad just before Christmas too. It was a very sad day saying goodbye to such a remarkable man. Also, Another girl from my support group died over the Christams season. She was 36. I didn’t know her but it really hit close to home. She had the same brain problem as me. She was the 3rd girl in 2 months to lose her fight against this awful disease. Another girl my age spent a month ventilated when her brain stem lesion caused so much swelling she couldn’t breath on her own. More research is certainly needed to prevent more people losing their battle too. Now for the good news…! My nuero physio has also decided that I don’t need to see him anymore. I have improved so much that providing I keep following my exercises (BORING!) I will not need to see him again unless I have another relapse. I will continue the other physio 2 days a week to maintain my awesomeness tho 🙂 I contacted a neurologist in America at the John Hopkins centre in December.  They specialise in NMO and other inflammatory diseases of the central nervous system.  He reviewed my case and offered some pretty cool advise. He believes that I either have NMO or vasculitis (both shit diseases!).  But he says that I need to stop worrying about exactly what this awful disease is because the treatment is the same. If I start chemo in May that is effective treatment for NMO and vasculitis. This has totally put me at ease. Now I have 3 different specialists who can all agree on treatment even if they disagree with the diagnosis. Where is Dr House when you need him? Apparently, one day we will have a definite diagnosis, when a scan changes, or I get worse, or hopefully when more research is done. In the mean time.. I have registered for the Gibb River bike ride. We have all agreed that chemo can wait till I get home at the end of May. I have booked my flights so I have something to look forward to instead of focusing on all the things my body can no longer do. I am mostly staying positive but I still have days where I am so frustrated and a little angry. It is important to recognise that being positive all the time is not achievable. Sometimes when people ask me how I am, I just say I’m fine because it is easier for everyone that way. Sometimes, I mention the shit things about this disease, like dying or becoming paralysed and I think it scares other people more than me. I think in general,  people need to learn to listen and try to understand or empathise and not just say “you’ll be fine.” Because, I hope I will be fine, I’m doing anything I can to stay fine, but what if I’m not? 36.

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7 thoughts on “Up’s and Down’s

  1. Anta says:

    Thanks for the update lady! Sorry To hear of the loss of your pop. Im glad To hear That you still be able To have your cervix so That if time allows you can still make That decision. Your right that you can’t always be positive and days of “what if it doesn’t get better” will be there. But planning to do the gibb on the bike again is an amazing effort! And you should be proud of yourself!

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  2. Jackie gowers says:

    Oh my Buddha, Jess, you have been put through the ringer. Why do such shit things happen to wonderful people? Why is it the best souls on this planet suffer? To teach the rest of us to have gratitude for every single moment of each single day. To love passionately. To be the best we can. To live authentically. Thank you for reminding me Jess, I would love to say how wonderful you are and what an inspiration you are, but I know you hear this every day and whilst it’s cool to hear, it doesn’t change what’s happening for you. I just wish and I hope for you that you continue to live in the most awesome fashion you always have! Xxx

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  3. Joe knight-Smith says:

    Hey Jess, love your attitude. And thank you for the update. Hang in there girl you have bucket loads of support and if we can do anything for you here in Geraldton just holler. Admire you enormously.

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  4. Louise Morgan says:

    Jess Trew you are one inspirational woman!!! I gave you a big cheer when I read your good news. That must have given you a big boost. Very happy for you 😀. Not only are you inspirational you are very determined. Another bike ride. Good for you. Can you direct your fundraising to your own nominated cause or is it set by the organisers of the bike ride? Whatever it is, send me the link so we can contribute. Cheers Jess 😊💝xo.

    Love Lou and Russell

    Sent from my iPad

    >

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  5. Sue says:

    Hey Jess
    Yeah it really sucks big time. This sort of stuff is supposed not to happen to the people we love. And we all love you. But you are your normal self and attacking the bastard head on. You go girl.. And if it’s not alright know that we will be there doing everything we can to support you. Including, but not limited to, shouting at the heavens and demanding answers …love you girl xx

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