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Thank You For Understanding

26/05/2014

I just wanted to write a post to say thank you to every one who supported my Lyme Disease Awareness campaign. I understand that it can be hard for a healthy person to understand what I actually go through on a daily basis. 7 years ago I wouldn’t have been able to imagine being in so much pain – so I get it. This is why it means a lot to me that you’re trying. The support I have, and am still receiving on Instagram has been overwhelming – in a good way. The kind comments help to raise my spirits on my bad days when I’m hating my body. I’ve been trying to think of a way to really explain what I go through but I don’t think I can do any better than my Lyme and Loss post. Instead, I hope that you will go to my friend’s blog and read what she has written. As well as being the sickest person I know, Amara also has a way with words. When you read the post, please keep in mind this: 

“I think I confuse people.  I’m not.  Sharp that is.  I have these bouts of lucidity.  And through willpower I can force myself to focus very hard.  But I am completely scrambled.  Earlier I got stuck on the bed with my feet on the walker, my hands on the handles, laying backwards, my hands being pinched.  I couldn’t remember what to do.  The meds work for brief periods but I can’t critically think or research I forget what it is that the first half of the sentence said.  It’s deceptive.  I seem much better than I am and than people see vision of me and get some insight…. but still don’t really understand how cognitively challenged I am and that it is just the skin of my teeth and sheer grit by which I manage to even communicate somewhat coherently.”
That is exactly how I feel but I’m not able to explain it as elegantly as she is. There are so many things I want to write about and say but most of the time my mind is in a thick fog. I try to grasp at thoughts but it’s like they’re just out of reach and the harder I try, the further away they get. There are a few pieces I have read that have explained my life better than I can, and Amara’s is one of them. I am lucky to not have seizures but other than that, the post explains my deepest feelings and struggles. I hope that by reading her blog, you will gain a better insight into everything that is chronic illness and Lyme Disease.
Something I made for Instagram to say thank you for the support I have received 

Love, Alinta

1 Comment

  • Marzi 26/05/2014 at 9:23 am

    Love you xoxo

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    I’m Alinta, an animal lover who writes reviews about cruelty free products as a distraction from my chronic illnesses. Read more…

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    • It’s been 6.5 weeks since my first Pfizer vaccination and 3.5 since my second, but I still feel like death warmed up. This isn’t surprising. My immunologist, GP and I all knew I would suffer, but that doesn’t make it easier to deal with. This isn’t a covid vaccine specific reaction, I react to all vaccines in the same way. I was out of action for 2 weeks after my meningococcal vaccine last December and most people don’t have any problems with that vax. My vaccine reactions are specific to only me, because of my unique immune deficiencies. My immunologist has never come across anyone else with the combination of immune deficiencies that I have. Unfortunately, one of my worse deficiencies is that of Memory B Cells, which means I don’t make immunity to many vaccines, and when I do, it doesn’t last for long. I still get vaccinated despite this, because it matters. So the point of this post - please get your covid vaccination when you are eligible to. Many vulnerable people like myself are relying on herd immunity and we’re just not going to get there if everyone doesn’t do their part. I didn’t get a pretty sticker but the potential of covid antibodies is better than any sticker. 
Pic description: selfie of me in a mask with neon yellow sticker that says I have had the covid-19 vaccine, taken just after my second vaccination.
      It’s been 6.5 weeks since my first Pfizer vaccination and 3.5 since my second, but I still feel like death warmed up. This isn’t surprising. My immunologist, GP and I all knew I would suffer, but that doesn’t make it easier to deal with. This isn’t a covid vaccine specific reaction, I react to all vaccines in the same way. I was out of action for 2 weeks after my meningococcal vaccine last December and most people don’t have any problems with that vax. My vaccine reactions are specific to only me, because of my unique immune deficiencies. My immunologist has never come across anyone else with the combination of immune deficiencies that I have. Unfortunately, one of my worse deficiencies is that of Memory B Cells, which means I don’t make immunity to many vaccines, and when I do, it doesn’t last for long. I still get vaccinated despite this, because it matters. So the point of this post - please get your covid vaccination when you are eligible to. Many vulnerable people like myself are relying on herd immunity and we’re just not going to get there if everyone doesn’t do their part. I didn’t get a pretty sticker but the potential of covid antibodies is better than any sticker. Pic description: selfie of me in a mask with neon yellow sticker that says I have had the covid-19 vaccine, taken just after my second vaccination.
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Unfortunately, those who are the least responsible for climate change are the ones who ones who will suffer the most, and many Indigenous people will be more vulnerable to the impacts of climate change because of colonisation. Indigenous people and their knowledge are frequently left out of climate discussions and that needs to change. My climate change uni subject focuses on exactly that this week. 
For a long time I’ve wanted to post about this sort of thing but I haven’t known where to start. I have no idea where the level of environmental and climate knowledge is at with the general public so I would love if you could let me know how much you know about it. Then at least I have a place to start. 
Also, thanks for sticking by me, it has been very hard to get through this subject whilst going through all my health stuff plus vaccines. I have my second vax on Thursday and a few more weeks of uni and then I’ll be around more often. 
Oh and don’t forget to show up to the climate strike on Friday 😊
Pic description - white lined notebook on black background with handwriting that says First Nations People’s and Earth Based Governance. 
#climatechange #alwayswasalwayswillbe #lovealinta
      I think I’ve made it pretty obvious that I care about Indigenous rights as well as the environment. So I am particularly interested in how Indigenous people want to combat climate change because climate change action desperately needs to be decolonised. Unfortunately, those who are the least responsible for climate change are the ones who ones who will suffer the most, and many Indigenous people will be more vulnerable to the impacts of climate change because of colonisation. Indigenous people and their knowledge are frequently left out of climate discussions and that needs to change. My climate change uni subject focuses on exactly that this week. For a long time I’ve wanted to post about this sort of thing but I haven’t known where to start. I have no idea where the level of environmental and climate knowledge is at with the general public so I would love if you could let me know how much you know about it. Then at least I have a place to start. Also, thanks for sticking by me, it has been very hard to get through this subject whilst going through all my health stuff plus vaccines. I have my second vax on Thursday and a few more weeks of uni and then I’ll be around more often. Oh and don’t forget to show up to the climate strike on Friday 😊 Pic description - white lined notebook on black background with handwriting that says First Nations People’s and Earth Based Governance. #climatechange #alwayswasalwayswillbe #lovealinta
      3 months ago
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      1/10
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Picture description: fair hand flat out with fingers spread showing silver coloured ring on ring finger with a green background. 
#ethicalengagementring #ethicalengagement #labdiamond #recycledplatinum #lovealinta
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      1/10
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We spent yesterday afternoon attempting to take our own engagement photos in the yard with a tripod and this is the result. Having a photographer would be so much easier but my immune system wouldn’t appreciate that. 
Oh and I’ll tell you all about my ring in another post as I designed it ☺️#engagedtomybestfriend #lovealinta

Photo 1 description: close up of the torsos of two people in dark colours standing side by side with arms stretched to the ground and holding hands. One hand over both arms showing silver coloured ring. 
Photo 2 description: man hugging female from behind with his arm around her chest. Her hands are on his arm showing ring. Both smiling at camera with greenery in background.
      I have some news. I’m engaged! As a kid/teen I never thought this would happen as I didn’t believe in love - then I got sick and worried that no one would see past my illnesses. But I have found someone who loves me for me, faults, illnesses and all and I can’t wait to marry him. We spent yesterday afternoon attempting to take our own engagement photos in the yard with a tripod and this is the result. Having a photographer would be so much easier but my immune system wouldn’t appreciate that. Oh and I’ll tell you all about my ring in another post as I designed it ☺️#engagedtomybestfriend #lovealinta Photo 1 description: close up of the torsos of two people in dark colours standing side by side with arms stretched to the ground and holding hands. One hand over both arms showing silver coloured ring. Photo 2 description: man hugging female from behind with his arm around her chest. Her hands are on his arm showing ring. Both smiling at camera with greenery in background.
      4 months ago
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      1/10
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      It’s been a while since I posted makeup, so here’s some makeup 🙃 the @meccamax Off Duty BB Cream made it into my 2020 faves blog post, and it’s still my favourite base to use on the rare occasion that I put makeup on. I’ve just been too tired to wear makeup the last couple of months. The #meccamax Off Duty BB Cream is cruelty free and vegan. It however only comes in 5 shades. I use the lightest shade Vanilla, which has a good undertone for me, but I have to mix it with the same amount of white concealer to make it light enough to use. @MeccaMaxima have said they will extend the shade range of their home brands for years now, but they still don’t sell a single base shade that I could use by itself, and I’m sure that’s the same for dark skin tones. The other criticism I have of this product is the packaging. The lack of pump makes it hard to control the amount that comes out, and I would really prefer if it were in glass as that would be easier to recycle. The actual cream itself is amazing though. The formula works so well on my skin. It’s easy to blend with a brush and doesn’t cake up or feel heavy. Have you tried this BB cream? Do you have another favourite cruelty free and vegan BB cream? #meccabeauty #crueltyfreebeauty #veganbeauty #lovealinta
      4 months ago
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      1/10
    • It has been a long week here. It’s my uni mid semester break, but it hasn’t been a break at all as I’ve spent the whole week writing things for my NDIS application. I’ve written 5000 words so far and spent far more money than I should have to to access support that I need. I’m trying to get my application in before the independent assessments start. If you don’t know, the federal government is trying to force independent assessments on people applying for or reviewing their NDIS plans. They have had a huge amount of feedback explaining how bad this will be for disabled people, but they just don’t care. Disabled people are going to go without the care that they need because this government is completely ableist. Non-disabled people really need to be speaking up about this right now, because the fed government is too ableist to listen to disabled people. Allies are really needed at times like this, so please show up. 
Picture description: Ableism is connected to all out struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable - Mia Mingus. Quote on pink and white background.
#ableism #ndis #disabilityrights #lovealinta
      It has been a long week here. It’s my uni mid semester break, but it hasn’t been a break at all as I’ve spent the whole week writing things for my NDIS application. I’ve written 5000 words so far and spent far more money than I should have to to access support that I need. I’m trying to get my application in before the independent assessments start. If you don’t know, the federal government is trying to force independent assessments on people applying for or reviewing their NDIS plans. They have had a huge amount of feedback explaining how bad this will be for disabled people, but they just don’t care. Disabled people are going to go without the care that they need because this government is completely ableist. Non-disabled people really need to be speaking up about this right now, because the fed government is too ableist to listen to disabled people. Allies are really needed at times like this, so please show up. Picture description: Ableism is connected to all out struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable - Mia Mingus. Quote on pink and white background. #ableism #ndis #disabilityrights #lovealinta
      4 months ago
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    • My chronic illness health planning blog post is up now at lovealinta.com (clickable link in bio). Managing multiple complex chronic illnesses is like having a full time job (that I don’t get paid to do), so I need all the help I can get to keep everything organised. In this picture you can see how I keep track of my appointments each month using the @chasingplannerpeace Colourful Month on Two Pages inserts and @pmdstickers. It helps with pacing to know exactly what I have coming up when, and makes sure I don’t forget to show up to any appointments. I’ve had so many appointments over the last month, plus I’m back at uni, so my body is extremely unhappy with me right now - but that’s just life when you have a long list of illnesses and specialists to go with them. Check out my blog post and let me know which inserts would help you the most with your health/medical planning. Do you have any planning tips for other chronically ill and disabled people? *press sample 
#chasingplannerpeace #pmdstickers #websterspages #chronicillnesslife #healthplanner #lovealinta
      My chronic illness health planning blog post is up now at lovealinta.com (clickable link in bio). Managing multiple complex chronic illnesses is like having a full time job (that I don’t get paid to do), so I need all the help I can get to keep everything organised. In this picture you can see how I keep track of my appointments each month using the @chasingplannerpeace Colourful Month on Two Pages inserts and @pmdstickers. It helps with pacing to know exactly what I have coming up when, and makes sure I don’t forget to show up to any appointments. I’ve had so many appointments over the last month, plus I’m back at uni, so my body is extremely unhappy with me right now - but that’s just life when you have a long list of illnesses and specialists to go with them. Check out my blog post and let me know which inserts would help you the most with your health/medical planning. Do you have any planning tips for other chronically ill and disabled people? *press sample #chasingplannerpeace #pmdstickers #websterspages #chronicillnesslife #healthplanner #lovealinta
      4 months ago
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    • Sending my love to everyone who has had a rough couple of weeks because of what it happening in Aus politics right now. Please prioritize your self care, it’s more important than ever at the moment. By self care, I don’t just mean applying a face mask and doing nothing else. I mean finding genuine ways to reduce the anxiety and/or depression that recent events have triggered. That might mean doing mindfulness, meditation, journaling or exercise. You can also talk to your doctor about medications that can help. Taking medication is not a sign of weakness, it’s just another tool that you can use to help. Coping is different for everyone, you need to find what works for you. The thing that has helped me the most is therapy. I have been in therapy for many many many years now, but the one thing that really helped my PTSD was EMDR. There are other techniques that can be used for PTSD too. If you’re in Melbourne, the CASA house, run via the Women’s hospital offers free services specifically for survivors of sexual assault. They also run a 24 hour counseling and support line - 03 9635 3610 that you can call any time. Nationally there is the 1800Respect line - 1800 737 732, Sexual Assault Counseling Australia 1800 211 028 and Lifeline (24 hour crisis line) 131 114. If you’re thinking about calling, please do it. I now have my PTSD well controlled, but it is harder during times like these. Getting help isn’t an immediate fix but it will make life a lot easier in the long run. You deserve help, please seek it. #ptsd #lovealinta
      Sending my love to everyone who has had a rough couple of weeks because of what it happening in Aus politics right now. Please prioritize your self care, it’s more important than ever at the moment. By self care, I don’t just mean applying a face mask and doing nothing else. I mean finding genuine ways to reduce the anxiety and/or depression that recent events have triggered. That might mean doing mindfulness, meditation, journaling or exercise. You can also talk to your doctor about medications that can help. Taking medication is not a sign of weakness, it’s just another tool that you can use to help. Coping is different for everyone, you need to find what works for you. The thing that has helped me the most is therapy. I have been in therapy for many many many years now, but the one thing that really helped my PTSD was EMDR. There are other techniques that can be used for PTSD too. If you’re in Melbourne, the CASA house, run via the Women’s hospital offers free services specifically for survivors of sexual assault. They also run a 24 hour counseling and support line - 03 9635 3610 that you can call any time. Nationally there is the 1800Respect line - 1800 737 732, Sexual Assault Counseling Australia 1800 211 028 and Lifeline (24 hour crisis line) 131 114. If you’re thinking about calling, please do it. I now have my PTSD well controlled, but it is harder during times like these. Getting help isn’t an immediate fix but it will make life a lot easier in the long run. You deserve help, please seek it. #ptsd #lovealinta
      5 months ago
      View on Instagram |
      1/10

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