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These past few weeks have crashed on to me. I have had less time to plan than I  would like and barely hours at a time to preplan or brief myself. The short story is that I'm going somewhere. Somewhere that is pretty exciting. I cannot say why or where. I also won't have The Internets or ready availability to keep in touch. I apologise and promise that next week all will be revealed. 
#lupus #thislupuslife #blog #blogger #lupie #butyoudontlooksick #systemiclupuserythematosus #arthritis #rheumatoidarthritis #lupielife #lupuscerebritis
These past few weeks have crashed on to me. I have had less time to plan than I would like and barely hours at a time to preplan or brief myself. The short story is that I'm going somewhere. Somewhere that is pretty exciting. I cannot say why or where. I also won't have The Internets or ready availability to keep in touch. I apologise and promise that next week all will be revealed. #lupus  #thislupuslife  #blog  #blogger  #lupie  #butyoudontlooksick  #systemiclupuserythematosus  #arthritis  #rheumatoidarthritis  #lupielife  #lupuscerebritis 
My life is such a paradox. This time last year I was suffocating by just existing. I could just not see how things could improve. I was unsure of myself, my relationships, my finances and my career abilities. When I was signed as incomplete in my teaching prac this February, I felt sure at each that the small recoveries I had made would just swallow me up. But I look now at where I am and l know I am blessed. The opportunities that have come my way are serendipitous to some extent, but mostly it is the time and effort I put in. The suffering and hard times caused me to dig my own path, find my special way in this world. I am not planning on doing what I wanted, I am going to do what I was put here to do, and that is so much better. The pain and challenges l faced have given me the flexibility to ensure this happens and that I accept the changes as they come. Lupus doesn't 'toughen you up', if anything, it softens you. And it is this softness that allows you to bend to the winds of change, and be open to new situations. 
It is for this reason that I say I am thankful for my Lupus. 
#lupus #systemiclupuserythematosus #lupuslife #thislupuslife #blog #blogger #lupuscerebritis #lupie #lupielife #positive
My life is such a paradox. This time last year I was suffocating by just existing. I could just not see how things could improve. I was unsure of myself, my relationships, my finances and my career abilities. When I was signed as incomplete in my teaching prac this February, I felt sure at each that the small recoveries I had made would just swallow me up. But I look now at where I am and l know I am blessed. The opportunities that have come my way are serendipitous to some extent, but mostly it is the time and effort I put in. The suffering and hard times caused me to dig my own path, find my special way in this world. I am not planning on doing what I wanted, I am going to do what I was put here to do, and that is so much better. The pain and challenges l faced have given me the flexibility to ensure this happens and that I accept the changes as they come. Lupus doesn't 'toughen you up', if anything, it softens you. And it is this softness that allows you to bend to the winds of change, and be open to new situations. It is for this reason that I say I am thankful for my Lupus. #lupus  #systemiclupuserythematosus  #lupuslife  #thislupuslife  #blog  #blogger  #lupuscerebritis  #lupie  #lupielife  #positive 
As a deadline draws nearer for something I desperately want, I find it harder to focus myself. The work to get to this point has been intense, the wait as the future unfolds will be more so. And in the meantime I have this whole 'Lupus Thing' to deal with. 
#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #butyoudontlooksick #sick #ventricularectopy
Update on chemo breakout: My Rheumatologist said the breakout isn't caused by the Lupus, Polymyositis, or Dermatomyositis. But I'm on chemotherapy because of those things so I'll always blame them lol. I went to see my Dermatologist and they took two biopsies. The biopsies were deep enough for them to give me stitches. The procedure was painless because of the anesthesia, but it's painful now. I'll keep you updated on the results.
#Lupus #lupuslife #polymyositis #lupuscerebritis #chemotherapy #Dermatomyositis #findacure #lupuswarrior #lupusflare #mixconnectivetissuedisease #lupusawareness #living #lovinglife
Update on chemo breakout: My Rheumatologist said the breakout isn't caused by the Lupus, Polymyositis, or Dermatomyositis. But I'm on chemotherapy because of those things so I'll always blame them lol. I went to see my Dermatologist and they took two biopsies. The biopsies were deep enough for them to give me stitches. The procedure was painless because of the anesthesia, but it's painful now. I'll keep you updated on the results. #Lupus  #lupuslife  #polymyositis  #lupuscerebritis  #chemotherapy  #Dermatomyositis  #findacure  #lupuswarrior  #lupusflare  #mixconnectivetissuedisease  #lupusawareness  #living  #lovinglife 
My daily medications have changed. Now I am on 700mg twice daily of Sodium Valproate. Yay for anti seizure medication!! #antiseizure #sodiumvalproate #medication #epilepsy #lupuscerebritis #systemiclupuserythematosus #lupus #lupie #chronicillness #autoimmuneillness #lupielife
My Lupus has been bad lately.  Thank goodness I have companions to make sure I don't get lonely. They aren't much good for conversation though 🤨 
#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #thislupuslife #lupusawareness #blog #blogger #chronicillness #chronicpain
I just turned 30, meaning I have survived my first decade with Lupus. Why don't I look 30? What have I been doing in the lead up to my 30th? What has kept me so busy and absent and scattered lately? What am I going to do now?  http://www.thislupuslife.com/one-decade-of-lupus/

#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #thislupuslife #blog #blogger #immunesystem #lupie
New blog post: I just posted a rambling about my issues dealing with #lupuscerebritis, #seizures and trying to work my shit out with the DMV in order to get my drivers license back. No biggie (well, kinda...)
New blog post: I just posted a rambling about my issues dealing with #lupuscerebritis , #seizures  and trying to work my shit out with the DMV in order to get my drivers license back. No biggie (well, kinda...)
I forgot to take my needle bandage off for a few days!! It seems I may have ha DC a little bruise 🤔 
#needle #injection #mri #lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #butyoudontlooksick
So I fell asleep in my MRI, like usual.  But this time I jerked and woke myself up. In the longest scan. Meaning we had to do it again. I kept my eyes open for the next 20 minutes, mentally reciting the Phonetic Alphabet to keep myself awake. Ironically, at nights, if I want to put myself to sleep I mentally recite the Phonetic Alphabet. 
#lupus #lupuscerebritis #systemiclupuserythematosus #lupusawareness #butyoudontlooksick #chronicillness #autoimmuneillness #MRI #RPH #braindisease #brainscan
So I fell asleep in my MRI, like usual. But this time I jerked and woke myself up. In the longest scan. Meaning we had to do it again. I kept my eyes open for the next 20 minutes, mentally reciting the Phonetic Alphabet to keep myself awake. Ironically, at nights, if I want to put myself to sleep I mentally recite the Phonetic Alphabet. #lupus  #lupuscerebritis  #systemiclupuserythematosus  #lupusawareness  #butyoudontlooksick  #chronicillness  #autoimmuneillness  #MRI  #RPH  #braindisease  #brainscan 
Normally when I go to RPH for an MRI, it is tied in with a doctor's appointment. I like to dress well to go out, especially when I go in to town.  But, this afternoon is just an MRI appointment. The weather is terrible, I feel horrible and last night I slept badly. Today I am in my comfy clothes and ready to take a nap in the machine. Traditionally, my time in the machine is some of the best day-naps I have so I am just so excited! 
#mri #rph #brainscan #systemiclupuserythematosus #lupuscerebritis #braindisease #blog #blogger #thislupuslife #lupie #lupielife
Normally when I go to RPH for an MRI, it is tied in with a doctor's appointment. I like to dress well to go out, especially when I go in to town. But, this afternoon is just an MRI appointment. The weather is terrible, I feel horrible and last night I slept badly. Today I am in my comfy clothes and ready to take a nap in the machine. Traditionally, my time in the machine is some of the best day-naps I have so I am just so excited! #mri  #rph  #brainscan  #systemiclupuserythematosus  #lupuscerebritis  #braindisease  #blog  #blogger  #thislupuslife  #lupie  #lupielife 
Hear about my heart (and lungs) on my YouTube channel now!!! https://youtu.be/T3P1rjznJ-k

#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #thislupuslife #blog #blogger #vlog #vlogger #heart #heartbeat
Chemotherapy infusion. I didn't drink a lot of water today and I feel horrible. If you're getting chemotherapy make sure you drink plenty of water before, during, and after your infusion. #Lupus #lupuslife #lupuswarrior #lupuscerebritis #lupusflare #lupusla #chemotherapy #polymyositis #findacure #fighter #living #pain
On my way to RPH. Can you see St Mary's Cathedral at the end? That's my destination, basically! We've walked there every time since I began at this clinic 4 years ago. 
#immunology #rph #royalperthhospital #lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #butyoudontlooksick
Porridge and spiced nut granola breakfast? Don't mind if I do! I'm do pleased with this healthy eating plan. Most of the recipes align with the foods recommended to me by my nutritionist. The recipes are realistic and appetising enough to satisfy my parents palates. We've all been on my healthy eating plan for two weeks now and I feel a lot better! I hope they do too.

#csiro #csirodiet #csirolowcarbdiet #chronicillness #autoimmuneillness #healthyeating #eatingforhealth #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #lupus
Porridge and spiced nut granola breakfast? Don't mind if I do! I'm do pleased with this healthy eating plan. Most of the recipes align with the foods recommended to me by my nutritionist. The recipes are realistic and appetising enough to satisfy my parents palates. We've all been on my healthy eating plan for two weeks now and I feel a lot better! I hope they do too. #csiro  #csirodiet  #csirolowcarbdiet  #chronicillness  #autoimmuneillness  #healthyeating  #eatingforhealth  #systemiclupuserythematosus  #lupuscerebritis  #autoimmuneillness  #thislupuslife  #lupie  #lupielife  #lupus 
Them seizure days. I won't drive after even the smallest of seizures. And on a day like today, with the weather hitting with severe storm winds and rain, and a freeway southbound commute from the city center, I'd be crazy to think about it. The  seizure was small, I was present for the full 2 1/2 minutes of it. My left side numbness went within 30 minutes and I had most of my coordination back in 2 hours. But the giddiness traded itself in for a period of glumness which, I know, will become a migraine by dinnertime. I'm soaked and sulky, but forever grateful I have parents who can help me in times like this. 
#seizure #seizuredays #epilepsy #lupus #lupuscerebritis #cerebralvasculitis #butyoudontlooksick #chronicillness #autoimmuneillness #blog #blogger
Them seizure days. I won't drive after even the smallest of seizures. And on a day like today, with the weather hitting with severe storm winds and rain, and a freeway southbound commute from the city center, I'd be crazy to think about it. The seizure was small, I was present for the full 2 1/2 minutes of it. My left side numbness went within 30 minutes and I had most of my coordination back in 2 hours. But the giddiness traded itself in for a period of glumness which, I know, will become a migraine by dinnertime. I'm soaked and sulky, but forever grateful I have parents who can help me in times like this. #seizure  #seizuredays  #epilepsy  #lupus  #lupuscerebritis  #cerebralvasculitis  #butyoudontlooksick  #chronicillness  #autoimmuneillness  #blog  #blogger 
I have been having irregular heart beats. Why is it worth my worrying about this? Am I obsessing, or am I being wisely cautious, given my current health issues and Lupus history?  http://www.thislupuslife.com/my-heart/ 
#heart #heartbeat #health #lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #butyoudontlooksick #blog #blogger
That's right folks! I've just undertaken a 24-hr medical test. I didn't even need to take my clothes off for it 😁 watch my video on This Lupus Life's YouTube channel! 
https://youtu.be/VYB9q4_k2Qk

#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #butyoudontlooksick #blog #blogger #vlog #vlogger
I have been speaking to many people recently about how unfair it is that there has been no cure found to 'fix' Lupus. Yes I agree, this sucks, but I also tend to question the thinking. Can Lupus be 'fixed'? Can any chronic illness be fixed? What does it mean to fix something in the body which is as widespread as Lupus? It is not as simple as wiping out your immune system (God knows I've tried that a few times!) Nor is it a case of removing the 'culprit organ'. So, if we were to fix it, what would it look like? And why are we so adamant to get this quick fix anyway? What, in our society has led us to the presumption and demand for healing the body with a basic dose of a particular pharmaceutical product?

thislupuslife.com/can-you-fix-lupus/

#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #thislupuslife #lupie #lupielife #butyoudontlooksick #blog #blogger
I have been speaking to many people recently about how unfair it is that there has been no cure found to 'fix' Lupus. Yes I agree, this sucks, but I also tend to question the thinking. Can Lupus be 'fixed'? Can any chronic illness be fixed? What does it mean to fix something in the body which is as widespread as Lupus? It is not as simple as wiping out your immune system (God knows I've tried that a few times!) Nor is it a case of removing the 'culprit organ'. So, if we were to fix it, what would it look like? And why are we so adamant to get this quick fix anyway? What, in our society has led us to the presumption and demand for healing the body with a basic dose of a particular pharmaceutical product? thislupuslife.com/can-you-fix-lupus/ #lupus  #systemiclupuserythematosus  #lupuscerebritis  #autoimmuneillness  #thislupuslife  #lupie  #lupielife  #butyoudontlooksick  #blog  #blogger 
I've lost my voice, my senses of taste and smell, and have been bringing up yucky stuff all day. This cold isn't going to let me off easy. Seems about par for this year... So I've made myself my favourite soup, from my favourite recipe and am sharing it with a cup of herbal tea. 
The soup: Corn Chowder with Garlic and Bacon. 
The tea: Ginger and Lemongrass. 
How I'm feeling: Like crap.

#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #lupusawareness #thislupuslife #chronicillness #blog #blogger
I've lost my voice, my senses of taste and smell, and have been bringing up yucky stuff all day. This cold isn't going to let me off easy. Seems about par for this year... So I've made myself my favourite soup, from my favourite recipe and am sharing it with a cup of herbal tea. The soup: Corn Chowder with Garlic and Bacon. The tea: Ginger and Lemongrass. How I'm feeling: Like crap. #lupus  #systemiclupuserythematosus  #lupuscerebritis  #autoimmuneillness  #butyoudontlooksick  #lupusawareness  #thislupuslife  #chronicillness  #blog  #blogger 
An amazing snippet from a newly recieved email direct from the USA! It may be their money for their organizations,  but it is our win because it is our united interests (Lupus research) that this money goes towards. Hooray!!! Now we just need to get our own booties moving on this... #lupus #systemiclupuserythematosus #lupuscerebritis #lupusnephritis #lupusawareness #butyoudontlooksick #chronicillness #autoimmuneillness #discoidlupus #thislupuslife #lupie #lupielife
The Rituximab chemo has made my legs hairs super fine. In some places the hair hasn't grown back and in others it cannot break the surface of my skin. It's embarrassing showing my legs with so many red nasty bumps on them!! And my skin is so fine I can't exfoliate them. I have finally found a dream for them that doesn't give me a stingy inflammatory experience. Cross your fingers!

#ingrownhair #sensitiveskin #chemo #rituximab #nastyredbumps #legshairs #firstworldproblems #lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #lupusawareness #thislupuslife #blog #blogger
The Rituximab chemo has made my legs hairs super fine. In some places the hair hasn't grown back and in others it cannot break the surface of my skin. It's embarrassing showing my legs with so many red nasty bumps on them!! And my skin is so fine I can't exfoliate them. I have finally found a dream for them that doesn't give me a stingy inflammatory experience. Cross your fingers! #ingrownhair  #sensitiveskin  #chemo  #rituximab  #nastyredbumps  #legshairs  #firstworldproblems  #lupus  #systemiclupuserythematosus  #lupuscerebritis  #autoimmuneillness  #butyoudontlooksick  #lupusawareness  #thislupuslife  #blog  #blogger 
Yes, that is right. My life is in the midst of a great change. I have made some big decisions and hope there will be new and great things to come. Read what these are and why I have made these decisions. The blog posts also includes a new video. 
Blog:  http://www.thislupuslife.com/eating-for-my-lupus-brain/

Video: https://youtu.be/pUvpAtsaxes

#eatingforhealth #wellness #diet #newdiet #neweating #healthyeatinghabits #thislupuslife #lupus #systemiclupuserythematosus #lupuscerebritis #cerebritis #cerebralvasculitis #braininflammation #blog #blogger #vlog #vlogger #video
Yes, that is right. My life is in the midst of a great change. I have made some big decisions and hope there will be new and great things to come. Read what these are and why I have made these decisions. The blog posts also includes a new video. Blog: http://www.thislupuslife.com/eating-for-my-lupus-brain/ Video: https://youtu.be/pUvpAtsaxes #eatingforhealth  #wellness  #diet  #newdiet  #neweating  #healthyeatinghabits  #thislupuslife  #lupus  #systemiclupuserythematosus  #lupuscerebritis  #cerebritis  #cerebralvasculitis  #braininflammation  #blog  #blogger  #vlog  #vlogger  #video 
This cool cat is bringing you, with love, a second attempt at her first video. 
https://youtu.be/JstkzCbOkno 
Have a good weekend everyone!!!
#video #videoblog #vlog #vlogger #blog #blogger #thislupuslife #lupie #lupielife #butyoudontlooksick #autoimmuneillness #lupus #systemiclupuserythematosus #lupuscerebritis
What an embarrassing topic to speak of, you think? Well, jump on in, and have a read. Yes this is a symptom of autoimmune, chronic and many illnesses. It is just sadly unspoken of. I shared mine, now for you to share yours!  http://www.thislupuslife.com/incontinence-with-lupus/

#incontinence #toilettroubles #needtowee #lupus #systemiclupuserythematosus #lupuscerebritis #cerebralvasculitis #cerebritis #autoimmuneillness #braindisease #butyoudontlooksick #blog #blogger
I'm so Lupus,  I keep my make up pencils and brushes in sample cups haha!

#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #blog #blogger #thislupuslife #butyoudontlooksick #samplecups #thrifty #makeup
A small treat from a friend on her travels. I found this to be strangely satisfying. 
#lupus #systemiclupuserythematosus #lupuscerebritis #lupusstreet #tourist #travels #blog #blogger #thislupuslife #lupie
Update: I've been having dizzy spells and feeling like I'm going to pass out when I do very little walking. My headache was excruciating last night and I could do nothing but cry. I'll see a specialist at UCLA next week. Other than the headache I've been feeling much better. #polymyositis #Lupus #lupuslife #lupuswarrior #lupusflare #lupuscerebritis #lupusla #pain #stayingstrong #stayingpositive #lovinglife #findacure #mixconnectivetissuedisease
The good news is I'm out of bed and out of my pjs. The not as impressive news is I'm in my tracks and snuggled under blankets on the sofa... #lazy #lupus #systemiclupuserythematosus #autoimmuneillness #chronicillness #immunesystem #butyoudontlooksick #blog #blogger #thislupuslife #lupuscerebritis
The last few weeks have been focused on how my Lupus troubles have involved my parents directly. It took a lot of strength from them, I am sure and I can only thank them. You may have noticed, from the information I have trickled into the last 8 months of posts but some pretty big changes are happening in my life at the moment. It has left me scatterbrained and feeling quite insecure. But I would like to share with you the first crossroad I am coming up to. Incredibly it is not so much a crossroad as it is a three-way-intersection. I have some big choices to make and the first of those to bring more clarity to my intentions and communications with y'all. 
Have a read now and see how it grabs you. If you decide to follow through, as the end of the text suggests, please feel free to share your actions, thoughts, ideas with me!! Let's get it started in here!  http://www.thislupuslife.com/my-lupus-in-my-twenties/ ‎

#twenties #lupus #systemiclupuserythematosus #lupuscerebritis #cerebritis #lupie #lupielife #blog #blogger #lupuswa #butyoudontlooksick #thislupuslife
The last few weeks have been focused on how my Lupus troubles have involved my parents directly. It took a lot of strength from them, I am sure and I can only thank them. You may have noticed, from the information I have trickled into the last 8 months of posts but some pretty big changes are happening in my life at the moment. It has left me scatterbrained and feeling quite insecure. But I would like to share with you the first crossroad I am coming up to. Incredibly it is not so much a crossroad as it is a three-way-intersection. I have some big choices to make and the first of those to bring more clarity to my intentions and communications with y'all. Have a read now and see how it grabs you. If you decide to follow through, as the end of the text suggests, please feel free to share your actions, thoughts, ideas with me!! Let's get it started in here! http://www.thislupuslife.com/my-lupus-in-my-twenties/ ‎ #twenties  #lupus  #systemiclupuserythematosus  #lupuscerebritis  #cerebritis  #lupie  #lupielife  #blog  #blogger  #lupuswa  #butyoudontlooksick  #thislupuslife 
Update on my current flare up. I'm starting to feel a lot better. I'm still very fatigued and tired all the time. But my appetite is better and I'm not as nauseous. Headache is bearable. Thanks for the prayers, I love you all. #Lupus #lupuslife #lupuswarrior #lupusflare #lupuscerebritis #lupusla #polymyositis #stayingstrong #stayingpositive #imthankful #mctd
How is it that I look this good as I go to bed, but a complete mess throughout the rest of the day?! #lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #lupusawareness #thislupuslife #chronicillness #invisibleillness #blog #blogger #bedtime
Strong woman have begun some of the most incredible scientific and mathematic inquiries of history. Rachel Carson, one such woman was the foundational drive behind the largest environmental protection movement still promoted today, the Environmental Protection Agency (EPA). She was fundamental in the push for the ban of DDT usage. 
Lupus is an horrific illness, prominent in some (arguably minority) communities of the world: women, Asians, Africans and African Americans. We need to advocate, support and promote this disease for the improvement of treatment and funding of research. Just as Rachel Carson, we need to overcome the barriers and impress the importance of treatment and a cure. All of our minorities together make a majority and make us strong. Life is beautiful. Science is amazing. Lupus is beatable. 
#lupus #systemiclupuserythematosus #lupuscerebritis #lupusnephritis #lupusawareness #discoidlupus #chronicillness #autoimmuneillness #butyoudontlooksick #thislupuslife #blog #blogger #strength #rachelcarson
Strong woman have begun some of the most incredible scientific and mathematic inquiries of history. Rachel Carson, one such woman was the foundational drive behind the largest environmental protection movement still promoted today, the Environmental Protection Agency (EPA). She was fundamental in the push for the ban of DDT usage. Lupus is an horrific illness, prominent in some (arguably minority) communities of the world: women, Asians, Africans and African Americans. We need to advocate, support and promote this disease for the improvement of treatment and funding of research. Just as Rachel Carson, we need to overcome the barriers and impress the importance of treatment and a cure. All of our minorities together make a majority and make us strong. Life is beautiful. Science is amazing. Lupus is beatable. #lupus  #systemiclupuserythematosus  #lupuscerebritis  #lupusnephritis  #lupusawareness  #discoidlupus  #chronicillness  #autoimmuneillness  #butyoudontlooksick  #thislupuslife  #blog  #blogger  #strength  #rachelcarson 
The attached piece was written by Noli, my mother and one of my parent-carers. These are her thoughts on the Journey through this Lupus life, my Lupus life, and how it has brought her from a mother of three entering the ‘empty nest’ phase of her life, to wading through the health troubles of one of her children (me). I only asked for ’500 words or so.’ But here you go.

http://www.thislupuslife.com/caring-for-jess-…parent-and-carer/

#lupus #lupuscerebritis #systemiclupuserythematosus #blog #blogger #thislupuslife #lupie #carer #parent #parentcarer
The attached piece was written by Noli, my mother and one of my parent-carers. These are her thoughts on the Journey through this Lupus life, my Lupus life, and how it has brought her from a mother of three entering the ‘empty nest’ phase of her life, to wading through the health troubles of one of her children (me). I only asked for ’500 words or so.’ But here you go. http://www.thislupuslife.com/caring-for-jess-…parent-and-carer/ #lupus  #lupuscerebritis  #systemiclupuserythematosus  #blog  #blogger  #thislupuslife  #lupie  #carer  #parent  #parentcarer 
I'm very excited for my post today. My mother has willingly allowed me to share her thoughts, in her own words, on how this Lupus life (my Lupus life) has affected her and what it has meant for her to become a parent-carer. Stay tuned for my post to come out at about 12:30 AWST!! #lupus #systemiclupuserythematosus #lupuscerebritis #braindisease #blog #blogger #thislupuslife #parentcarer #carer #parents
You know when you get out old pictures and reminisce on when you were younger? It was 5 years ago in October that these scans were taken. That is when my life, world, and body became alien and different to me. Nothing has been the same since. I will never be that person, not the naive, rusting, lassez faire attitude nor the characteristically robust, boisterous young woman, or the healthy and physically active go-getter. I do not regret or yearn for her. Some of the changes are just natural and come from maturing into adulthood, they would have happened regardless. I think I am a better, more considerate and caring person now. I hope I have been able to give others what they need from me, when I could. And I hope I find a place to be happy in the world to come. 
#lupus #systemiclupuserythematosus #lupuscerebritis #braindisease #strong #lupusawareness #butyoudontlooksick #chronicillness #autoimmuneillness #blog #blogger #immunesystem #thislupuslife #brainlesions
You know when you get out old pictures and reminisce on when you were younger? It was 5 years ago in October that these scans were taken. That is when my life, world, and body became alien and different to me. Nothing has been the same since. I will never be that person, not the naive, rusting, lassez faire attitude nor the characteristically robust, boisterous young woman, or the healthy and physically active go-getter. I do not regret or yearn for her. Some of the changes are just natural and come from maturing into adulthood, they would have happened regardless. I think I am a better, more considerate and caring person now. I hope I have been able to give others what they need from me, when I could. And I hope I find a place to be happy in the world to come. #lupus  #systemiclupuserythematosus  #lupuscerebritis  #braindisease  #strong  #lupusawareness  #butyoudontlooksick  #chronicillness  #autoimmuneillness  #blog  #blogger  #immunesystem  #thislupuslife  #brainlesions 
#Repost @mickeynsync with @get_repost
・・・
Feeling good to be home, I'm dealing with a few minor side effects but I'll be okay. I'm strong and I got this. #Lupus #lupuslife #lupuscerebritis #findacure #polymyositis #lupusla #fighter #stayingstrong #stayingpositive #lovinglife
Another new blog post...as much as I hate lupus, I’m thankful that it lead me to blogging. Even though my IG stats suck right now. I’m trying to blog again for the sheer joy and fun of it again like I was in 2015 and not get so caught up in stats. Anyway, there’s a new post about my lupus and how I started blogging #linkinbio
Another new blog post...as much as I hate lupus, I’m thankful that it lead me to blogging. Even though my IG stats suck right now. I’m trying to blog again for the sheer joy and fun of it again like I was in 2015 and not get so caught up in stats. Anyway, there’s a new post about my lupus and how I started blogging #linkinbio 
Feeling good to be home, I'm dealing with a few minor side effects but I'll be okay. I'm strong and I got this. #Lupus #lupuslife #lupuscerebritis #findacure #polymyositis #lupusla #fighter #stayingstrong #stayingpositive #lovinglife
Didn't get much sleep last night because I've been drinking a lot of water to flush as much of the chemo out as possible. My tummy is upset and my appetite is nonexistent. I'm fatigued also, but I think my first treatment went well. #chemotherapy #lupuscerebritis #lupus #lupuslife #lupuswarrior #findacure #fighter #polymyositis #positivity #stayingpositive #nevergiveup
Lupus Cerebritis is flaring up again. I'm going to have to go through about 6 months of chemotherapy. I had my first treatment today. I been in the hospital since Tuesday, I'll be going home tomorrow. This will be a difficult summer, but I'll be strong. #Lupus #lupuslife #lupuswarrior #lupusflare #lupuscerebritis #polymyositis #findacure #fighter #myfight
How is everyone doing with this cooling weather? I love the cold...in theory. I hate what it does to me! 
#lupus #systemiclupuserythematosus #lupuscerebritis #autoimmuneillness #butyoudontlooksick #lupusawareness #thislupuslife #chronicillness #invisibleillness #blog #blogger
I was diagnosed with my illness as an adult. I never really thought my early years of adulthood would see me being cared for by anyone, let alone my parents. I am blessed to be in a situation in which this is possible, and blessed that my situation is not like some younger adults who are in a patient-carer situation. But my illness is Lupus, and I cannot truly know what is in my future, or how long that will be. I guess that is why my parents are my carers. Read about my first few years and what has already happened. 
http://www.thislupuslife.com/parents-as-carers/

#lupus #systemiclupuserythematosus #lupuscerebritis #braindisease #strong #blog #blogger #thislupuslife #lupie
I was diagnosed with my illness as an adult. I never really thought my early years of adulthood would see me being cared for by anyone, let alone my parents. I am blessed to be in a situation in which this is possible, and blessed that my situation is not like some younger adults who are in a patient-carer situation. But my illness is Lupus, and I cannot truly know what is in my future, or how long that will be. I guess that is why my parents are my carers. Read about my first few years and what has already happened. http://www.thislupuslife.com/parents-as-carers/ #lupus  #systemiclupuserythematosus  #lupuscerebritis  #braindisease  #strong  #blog  #blogger  #thislupuslife  #lupie 
My latest blog post talks about loving and trusting in God in the midst of having a chronic illness. Oh and I talk more in to detail about my hospitalization at the beginning of the month. Warning: it’s pretty heavy. If you’d like to read, please check it out #linkinbio
My latest blog post talks about loving and trusting in God in the midst of having a chronic illness. Oh and I talk more in to detail about my hospitalization at the beginning of the month. Warning: it’s pretty heavy. If you’d like to read, please check it out #linkinbio 
Today’s blog post about self-care if you’re taking medical leave for work, and tips I have. Come check it out when you can! ❤️
Today’s blog post about self-care if you’re taking medical leave for work, and tips I have. Come check it out when you can! ❤️
I've welcomed so many friendly faces into This Lupus Life recently that I wanted to take a step back and reflect, not just on lupus, but on what my lupus is and how it affects me. This reflection is on my Systemic Lupus Erythematosus and does not address my Lupus Cerebritis. 
http://www.thislupuslife.com/my-lupus-systemic-lupus-erythematosus/

#lupus #lupuscerebritis #systemiclupuserythematosus #lupusawareness #butyoudontlooksick #chronicillness #autoimmuneillness #blog #blogger #immunesystem #thislupuslife
I've welcomed so many friendly faces into This Lupus Life recently that I wanted to take a step back and reflect, not just on lupus, but on what my lupus is and how it affects me. This reflection is on my Systemic Lupus Erythematosus and does not address my Lupus Cerebritis. http://www.thislupuslife.com/my-lupus-systemic-lupus-erythematosus/ #lupus  #lupuscerebritis  #systemiclupuserythematosus  #lupusawareness  #butyoudontlooksick  #chronicillness  #autoimmuneillness  #blog  #blogger  #immunesystem  #thislupuslife 
I am one of the lucky ones. I have parents that can care for me. I am blessed not to need a full or part-time carer, just a casual one that is on-call. I have been able to overcome most of my side-effects of the Lupus at this point. But it is becoming clearer as time goes on that I will never regain independence to the extent I once had it. The way it happened was slowly, and unassumingly, so it feels not like an event, but like a lifestyle switch. I guess it is. You have been following me for the last five years, what do you think?  http://www.thislupuslife.com/independence-vs-carer/

#independence #carer #independent #lupus #systemiclupuserythematosus #lupuscerebritis #braindisease #chronicillness #autoimmuneillness #butyoudontlooksick #autoimmuneillness #immunesystem #thislupuslife #blog #blogger
I am one of the lucky ones. I have parents that can care for me. I am blessed not to need a full or part-time carer, just a casual one that is on-call. I have been able to overcome most of my side-effects of the Lupus at this point. But it is becoming clearer as time goes on that I will never regain independence to the extent I once had it. The way it happened was slowly, and unassumingly, so it feels not like an event, but like a lifestyle switch. I guess it is. You have been following me for the last five years, what do you think? http://www.thislupuslife.com/independence-vs-carer/ #independence  #carer  #independent  #lupus  #systemiclupuserythematosus  #lupuscerebritis  #braindisease  #chronicillness  #autoimmuneillness  #butyoudontlooksick  #autoimmuneillness  #immunesystem  #thislupuslife  #blog  #blogger 
Did you know, women with Lupus SHOULD NOT be recommended to use the Oral Contraceptive Pill as a defense against unwanted pregnancy? This medication already has a relatively concerning risk of stroke in women. When combined with The Pill this risk is compounded. Many doctors in Australia are not entirely versed in acceptable contraceptives for Lupus Patients. It is a niche market. So the patient must be proactive. Learn your risks, and learn the processes for falling pregnant unplanned or if you plan on trying soon. Don't let this become and issues for yourself, your partner or your unborn child.

#lupus #systemiclupuserythematosus #lupuscerebritis #lupusnephritis #lupusawareness #butyoudontlooksick #immunesystem #autoimmuneillness #chronicillness #discoidlupus #chronicillness
Did you know, women with Lupus SHOULD NOT be recommended to use the Oral Contraceptive Pill as a defense against unwanted pregnancy? This medication already has a relatively concerning risk of stroke in women. When combined with The Pill this risk is compounded. Many doctors in Australia are not entirely versed in acceptable contraceptives for Lupus Patients. It is a niche market. So the patient must be proactive. Learn your risks, and learn the processes for falling pregnant unplanned or if you plan on trying soon. Don't let this become and issues for yourself, your partner or your unborn child. #lupus  #systemiclupuserythematosus  #lupuscerebritis  #lupusnephritis  #lupusawareness  #butyoudontlooksick  #immunesystem  #autoimmuneillness  #chronicillness  #discoidlupus  #chronicillness 
I have met and heard of men with Lupus, but unfortunately their numbers are far surpassed by the amount of women with Lupus. I imagine a male with Lupus may struggle to get their diagnosis even more than the average person would given majority of doctors may think of it as a 'man's illness'. #lupus #systemiclupuserythematosus #lupuscerebritis #lupusnephritis #discoidlupus #lupusawareness #butyoudontlooksick #chronicillness #autoimmuneillness #blog #blogger
Today was a big day. Today, as part of World Lupus Day, the Lupus Foundation of WA held a Lupus lunch. Our gathering consisted of mostly the inner circle surrounding those who suffer, not those with the illness themselves. It was a wonderful meal, held at Oakover Winery in Middle Swan. The speakers were engaging and a delight to listen to. And I ate way too much. The beautiful girl beside me is a fellow Lupie. Just a teenager and already an old-hand in the chronic illness game. 
#lupus #lupuscerebritis #systemiclupuserythematosus #lupusawareness #discoidlupus #lupusnephritis #autoimmuneillness #chronicillness #immunesystem #butyoudontlooksick #blog #blogger #thislupuslife #lupie #lupielife
Today was a big day. Today, as part of World Lupus Day, the Lupus Foundation of WA held a Lupus lunch. Our gathering consisted of mostly the inner circle surrounding those who suffer, not those with the illness themselves. It was a wonderful meal, held at Oakover Winery in Middle Swan. The speakers were engaging and a delight to listen to. And I ate way too much. The beautiful girl beside me is a fellow Lupie. Just a teenager and already an old-hand in the chronic illness game. #lupus  #lupuscerebritis  #systemiclupuserythematosus  #lupusawareness  #discoidlupus  #lupusnephritis  #autoimmuneillness  #chronicillness  #immunesystem  #butyoudontlooksick  #blog  #blogger  #thislupuslife  #lupie  #lupielife 
Many people will suffer for years with this illness before they are diagnosed. Even when the illness appears to be obvious a doctor will be reluctant to acknowledge the diagnosis without a confirmation blood test. This blood test is the most assured means of confirming the disease, but often sufferers produce a 'false-negative' result.

#lupus #lupuscerebritis #systemiclupuserythematosus #lupusawareness #discoidlupus #lupusnephritis #autoimmuneillness #chronicillness #immunesystem #butyoudontlooksick #blog #blogger #thislupuslife
Many people will suffer for years with this illness before they are diagnosed. Even when the illness appears to be obvious a doctor will be reluctant to acknowledge the diagnosis without a confirmation blood test. This blood test is the most assured means of confirming the disease, but often sufferers produce a 'false-negative' result. #lupus  #lupuscerebritis  #systemiclupuserythematosus  #lupusawareness  #discoidlupus  #lupusnephritis  #autoimmuneillness  #chronicillness  #immunesystem  #butyoudontlooksick  #blog  #blogger  #thislupuslife 
The statistics in Australia are much different. They are lower, leaving the greater population and medical community less inclined to understand and respond to symptoms. As it is chronic in nature, there is ample opportunity for a person to keep suffering regardless of whether or not they receive a diagnosis.

#lupus #lupuscerebritis #systemiclupuserythematosus #lupusawareness #discoidlupus #lupusnephritis #autoimmuneillness #chronicillness #immunesystem #butyoudontlooksick
Lupus is an autoimmune disease. This means every day the body is fighting its' own cells. The cost of this constant battle is not just the loss of vital cells and wearing down of vital organs. It also means the hormonal levels are at odds. The temperature and blood pressure can vary to average. Most significantly, the constant excess of the battle leaves a fatigued mind struggling through a 'brain fog' in attempts to function. This is why we are always 'tired' and have difficulty thinking clearly for extended periods of time.

#lupus #systemiclupuserythematosus #lupuscerebritis #lupusnephritis #discoidlupus #lupusawareness #butyoudontlooksick #immunesystem #autoimmuneillness
Lupus is an autoimmune disease. This means every day the body is fighting its' own cells. The cost of this constant battle is not just the loss of vital cells and wearing down of vital organs. It also means the hormonal levels are at odds. The temperature and blood pressure can vary to average. Most significantly, the constant excess of the battle leaves a fatigued mind struggling through a 'brain fog' in attempts to function. This is why we are always 'tired' and have difficulty thinking clearly for extended periods of time. #lupus  #systemiclupuserythematosus  #lupuscerebritis  #lupusnephritis  #discoidlupus  #lupusawareness  #butyoudontlooksick  #immunesystem  #autoimmuneillness 
Happy World Lupus Day! 
Take some time to read about the illness from a technical perspective at Lupus WA website. 
http://www.lupuswa.com.au/about-lupus/

#lupus #lupuscerebritis #systemiclupuserythematosus #lupusawareness #discoidlupus #lupusnephritis #autoimmuneillness #chronicillness #immunesystem #butyoudontlooksick #blog #blogger
This week I reflected on resumés, in regards to illness. What do you write on a resumé when you have a chronic or active illness, injury or disability? As my degree draws to a close this question is becoming more of a cause for panic than ever before. Is there a need for it? Or is there a way you can get around submitting a resumé to complete strangers in stress-free way?

http://www.thislupuslife.com/chronic-illness-resume/

#resumé #work #employment #chronicillness #autoimmuneillness #butyoudontlooksick #illness #lupus #systemiclupuserythematosus #lupuscerebritis #blog #blogger #thislupuslife
This week I reflected on resumés, in regards to illness. What do you write on a resumé when you have a chronic or active illness, injury or disability? As my degree draws to a close this question is becoming more of a cause for panic than ever before. Is there a need for it? Or is there a way you can get around submitting a resumé to complete strangers in stress-free way? http://www.thislupuslife.com/chronic-illness-resume/ #resumé  #work  #employment  #chronicillness  #autoimmuneillness  #butyoudontlooksick  #illness  #lupus  #systemiclupuserythematosus  #lupuscerebritis  #blog  #blogger  #thislupuslife 
Are you excited for the cold weather? My hands say no and my back says no but my knees...screw it! THEY ALL SAY NO!! #lupus #systemiclupuserythematosus #rheumatoidarthritis #arthritis #butyoudontlooksick #chronicillness #autoimmuneillness #coldweather #chronicallyawesome #lupuscerebritis #thislupuslife #lupie #lupielife
One of the constants in my life is my role in volunteering. I find something so fulfilling in the act. It may be selfish, but I offer my time as a way to make me feel better (in my mental health). Volunteering brings so much in to your life and I cannot emphasise enough how important it is for everyone involved. Read how I engage in volunteering, why I am doing so much of it at the moment and what you, as the volunteer, gets out of it. 
http://www.thislupuslife.com/volunteer-with-illness/

#volunteer #volunteering #donate #help #helpingothers #youcandoit #goforit #feelgood #dogoodfeelgood #actbelongcommit #thislupuslife #lupus #systemiclupuserythematosus #lupuscerebritis #cerebritis #chronicillness
One of the constants in my life is my role in volunteering. I find something so fulfilling in the act. It may be selfish, but I offer my time as a way to make me feel better (in my mental health). Volunteering brings so much in to your life and I cannot emphasise enough how important it is for everyone involved. Read how I engage in volunteering, why I am doing so much of it at the moment and what you, as the volunteer, gets out of it. http://www.thislupuslife.com/volunteer-with-illness/ #volunteer  #volunteering  #donate  #help  #helpingothers  #youcandoit  #goforit  #feelgood  #dogoodfeelgood  #actbelongcommit  #thislupuslife  #lupus  #systemiclupuserythematosus  #lupuscerebritis  #cerebritis  #chronicillness 
Becoming used to my Lupus skin has meant embracing the shadows. I have come to love my fair/alabaster complexion. 
#complexion #fairskin #lupus #photosensitive #paleskin #systemiclupuserythematosus #lupuscerebritis #chronicillness #autoimmuneillness
Recently I took a big blow as I learned that because of my disease I was not employable in my career of choice. This is too common and, while devastating, not a big surprise. 
Read now how my Lupus has affected my employability. 
http://www.thislupuslife.com/my-lupus-my-employability/

#lupus #lupuscerebritis #cerebralvasculitis #butyoudontlooksick #systemiclupuserythematosus #autoimmuneillness #chronicillness #blogger #blog #spoonie #disease #illness
A little message from me to you to brighten the (ours/ mine/ yours???) day

#chemo #chemocold #immunosuppressed #rituximab #autoimmuneillness #allergies #lupuscerebritis #lupus #chronicillness #blog #blogger
In my blog post today I referred to my Medicalert safety purse. Whenever I volunteer, study or exercise at a new location, or go out with people socially, I immediately introduce them to my safety purse. Read my blog to find out why, and how it can help in the work place. Also let's just take a second to note how cute my lifesaving device is!! #blog #blogger #readonline #safetypurse #medicalert #stjohns #stjohnambulance #cutepurse #purse #lifesaving #chronicillness #autoimmuneillness #lupus #lupuscerebritis #systemiclupuserythematosus
In my blog post today I referred to my Medicalert safety purse. Whenever I volunteer, study or exercise at a new location, or go out with people socially, I immediately introduce them to my safety purse. Read my blog to find out why, and how it can help in the work place. Also let's just take a second to note how cute my lifesaving device is!! #blog  #blogger  #readonline  #safetypurse  #medicalert  #stjohns  #stjohnambulance  #cutepurse  #purse  #lifesaving  #chronicillness  #autoimmuneillness  #lupus  #lupuscerebritis  #systemiclupuserythematosus 
Thank you for all your support ❤️ #lupuscerebritis#lupuswarrior#godbless