This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Awards and Progress

7 Comments

spooniesupport

I have been madly running around in a rather uncoordinated fashion lately. I’m not one who likes to work through things in a logical order or to manage things in a timely way. It is particularly strange given that I am a sucker for organisation and propriety. I would like to officially blame it on the fact that my favourite organising system, my diary of choice, is my university diary which is never released until Orientation Week (O-Week). This annual celebration of tertiary education falls the week before university classes start and so is the last week of February. Two whole months without a ‘proper’ method of organising! I’ve died a little inside at this extreme wait.

In actual fact the cause for my lax methodology is largely due to my Lupus (SLE) flaring, as well as this crazy notion I have of doing everything at once.

So. You may now wonder about my flare, and rightly so. Or my idea of ‘everything’, also justifiable.

Firstly, I’m only going to say this as a matter of sharing, but I have ‘met someone’, as they put it. It’s too early to say more, and he reads this so I will leave it there 😉

Secondly, I have kind of started to write my book. I think I have mentioned it already and I want to focus on that specifically in detail a little further down the track. Needless to say for now, I am writing about chronic illness and coping with and navigating the myriad resources and paths that need to be taken. How to understand the changes, how to process them, how to select medical options, treatments and practitioners. What you need to know, questions to ask, ideas that are okay and ideas that are just crazy, but still okay. What help to seek, when to hold on and when to let go of something. Basically, it is kind of a ‘How To’ guide on chronic, mental and life-changing illness. Perhaps it is presumptuous of me but I really think I can help.

Thirdly, I’ve gone a bit crazy realising the extent to which I will need to bury my nose in a book if I have any hope of surviving my Reading Challenge. Especially with Lupus, uni, Lupus, work, socialising and did you know I have Lupus? Gee!

Following this I have two (count that TWO!) Graphic Designers. The first beautiful soul helped me design my cards. With the lovely Julie Kelly I have been able to develop a brand logo for This Lupus Life. There is now a font, an image and a colour scheme (eep!). This is important because the second designer, my good friend Harry (whose real name is Michael) is working on creating a more functional website (blogsite?). I need this so when I have published me book I can sell it to all you lovelies.

My business cards have arrived!!! Hoorah! Pretty much most exciting step in my 'Master Plan' for #ThisLupusLife

A post shared by Jessie Frost (@thislupuslife) on

Harry has helped me to develop the This Lupus Life Facebook page also. Gee whiz talk about Big Girl Panties! I am now live on that so my friends all around the world can follow me there too, in case this is too hard or inconvenient. I will also be able to share some of the great research I have found online regarding chronic and mental health concerns to that page.

The final and most exciting noteworthy event of the last little while is that I have been chosen as the Blogger of the Week in the Instagram Spoonie Support Network. The week in question is this current week February 21-28.

As to my current flare? I have been having migraines, pain from my Costochondritis and general swelling from Rheumatoid Arthritis. Yesterday (February 24 2015) I was also blessed (?) with my first seizure of 2015. I was at home so mostly I was fine but I ran into a lot of things.

So this has been my life for February and in a short few days I will share with you my updated literature escapades in relation to my challenge.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

7 thoughts on “Awards and Progress

  1. You’re amazing with your continued outreach to impact and make a difference for others fighting the good fight. You’re book will be another tool for many striving to put all the pieces together with the now whats of life. Keep up the great work and feel better! 🙂

    Liked by 1 person

    • Cath, thank you so much! I love and appreciate your writing and your words mean a lot to me! I would love to have your input on what struggles you face with MS, perhaps I will contact you when I am closer to editing. I hope you, your family and your garden are doing well x

      Liked by 1 person

  2. Congratulations! 🙂

    Like

  3. I have such a good feeling about recommending your Blogg to my daughter. My girl (21) still says I don’t have Lupus mum if your interested you read about it.
    Sometimes that’s good sometimes not. Thank you

    Liked by 1 person

    • Maria it never hurts to find out. I have learned there are many autoimmune and mixed connective tissue diseases that share similar characteristics to a point. It is important to note everyone us different as is every occurrence of illness, not everyone has a simple diagnosis process and sometimes trusting your instinct and pushing doctors is hard but necessary. I find Lupus Q & A by Drs Lathiga & Phillips is a good comfort but finding an Immunologist & Rheumatologist definitely helps! The hardest part is not knowing and feeling alone. I truly wish you all the best on your journeys

      Like

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