Living With Autoimmune Encephalitis JP

  Autoimmune Encephalitis is a serious medical condition in which the immune system attacks the brain. We hope to raise awareness and educate.  

[livingwithaejp]

It is a day that has special meaning to me and many others touched by encephalitis and more specifically autoimmune encephalitis in my case. 7 years ago, I didn't know what Autoimmune Encephalitis was until I “woke up” in the Penn Medicine Hospital of the University of Pennsylvania after being misdiagnosed by two different doctors at two different hospitals and almost being committed to the nursing home to “live out the rest of my life comfortably.” i love @pennmedicine . Encephalitis is an illness that involves the inflammation of the brain from either an infection or the immune system mistakenly attacking the brain. In my case, I have Autoimmune Encephalitis which is a rare illness that causes the immune system to think something is invading your body (which it should do) but it develops a "glitch" and it thinks the brain is the culprit. So, it starts attacking the brain. Symptoms are similar to symptoms of other neurological illnesses such as dementia, Alzheimer's, and schizophrenia. Among these symptoms are confusion, altered behavior, psychosis, hallucinations, sleep disturbance, cognitive issues, memory loss, seizures, and physical disorders. Hundreds of thousands of people globally each year are affected by autoimmune encephalitis, and encephalitis, and are misdiagnosed, but a correct and quick diagnosis can make all the difference between life and death. As such, education and raising awareness of this illness is extremely important and severely required as many people are wrongly diagnosed till the illness has done damage that can't be repaired or worse in some situations. As such, education and raising awareness of this illness is extremely important and severely required as many people are wrongly diagnosed till the illness has done damage that can't be repaired or worse in some situations. Two great organizations that are making real progress in raising awareness, research, and helping those with encephalitis & autoimmune encephalitis are: In USA: AE Alliance 

https://aealliance.org @aealliance

In UK:  Encephalitis Society 

https://www.encephalitis.info @the_encephalitis_society_ #red4wed #encephalitis #livingwithae #keepmovingforward All the best and keep moving forward!

[livingwithaejp]

It is good to get out even with the wind. Walking and balance is still a bit awkward even after all this time but getting better. Autoimmune encephalitis has left us with some varying issues, but adjusting however possible to the new normal is better than giving into it. All the best to you and keep moving forward. #AutoimmuneEncephalitis #livingwithae #keepmovingforward https://www.instagram.com/p/Cj8ORqeOnBO/?igshid=NGJjMDIxMWI=

[livingwithaejp]

If you know, you know... (for a little while at least) Keep moving forward.. #autoimmineencephalitis #keepmovingfoward #livingwithae https://www.instagram.com/p/Ch7iFVWpE-D/?igshid=NGJjMDIxMWI=

[livingwithaejp]

A great use for crpyto. Read full article: https://penntoday.upenn.edu/news/Penn-NFT-commemorates-mRNA-research-Weissman-Kariko #pennmedicine #nft #livingwithae https://www.instagram.com/p/Cf4A5U2Oxxu/?igshid=NGJjMDIxMWI=

[livingwithaejp]

"Doing let go" vs "Stop doing let go" "You stop clinging" Such a great thought on life. We keep wanting to "let go" but get stuck on figuring out how and that keeps us trapped in whatever situation we are in. I accumulated a lot of baggage during my life as I am sure you have too. Mine was mostly during my teens but also during various other parts of my life. And when I stopped and looked back after a moment where I was forced to reflect on my life, I decided to just let it go. Yes of course...It is easier sad than done. It took some time to actually & fully make peace with letting go of years of baggage. Once I did, I can't explain how much relief I felt. (Or maybe it was my cognitive issues lol) No no...it was true relief and a feeling of freedom. If you have similiar baggage, I hope you find your moment of letting go. All the best and keep moving forward! https://www.instagram.com/p/CfJurCCM_uf/?igshid=NGJjMDIxMWI=

[livingwithaejp]

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"Doing let go" vs "Stop doing let go" "You stop clinging" Such a great thought on life. We keep wanting to "let go" but get stuck on figuring out how and that keeps us trapped in whatever situation we are in. I accumulated a lot of baggage during my life as I am sure you have too. Mine was mostly during my teens but also during various other parts of my life. And when I stopped and looked back after a moment where I was forced to reflect on my life, I decided to just let it go. Yes of course...It is easier sad than done. It took some time to actually & fully make peace with letting go of years of baggage. Once I did, I can't explain how much relief I felt. (Or maybe it was my cognitive issues lol) No no...it was true relief and a feeling of freedom. If you have similiar baggage, I hope you find your moment of letting go. All the best and keep moving forward! https://www.instagram.com/p/CfJtfADlj9o/?igshid=NGJjMDIxMWI=

[livingwithaejp]

Today is #WorldEncephalitisDay!!! It is a day that has special meaning to me and probably is to those reading this. Education and awareness of this illness is extremely important and severely required as many people are wrongly diagnosed till the illness has done damage that can't be repaired or worse in some situations. The @aealliance is the best AE organization in the United States and is making real progress in raising awareness, research, and helping those with autoimmune encephalitis and their families, but as with every great organization, they can always use some help. Sooo...if you want to help raise awareness about #AutoimmuneEncephalitis, share this poster on all your social media. Also please use the hashtags #RED4WED #WED2022 As you share, please encourage others to as well. Awareness can make all the difference ! As always, all the best to you and yours and keep moving forward !! https://www.instagram.com/p/CaRJJmvO-yj/?utm_medium=tumblr

[livingwithaejp]

You are not broken. You may have broke, but you are not broken. Unless you choose to be ! #broken #life #survivor #keepmovingforward https://www.instagram.com/p/CX_TSryLIfc/?utm_medium=tumblr

[livingwithaejp]

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It takes a lot to change how you think act react feel about things. It is usually a trauma or an extreme happy event that inflicts that change. I am not talking about a New Year's resolution. I mean life events that force you to change. For instance, you either experience something that crushed you but you survived it, lost loved ones, becoming a parent. Yes those arent the only things but it demonstrates the broader spectrum of things that happen to us that inflcit change. For me, that change was inflicted a few times in my life as i am sure it has been for you. For me...A teen life that teetered on the edge, becoming a step parent and then a parent, and dying twice technically when i was diagnosed with my illness among other things. But, because of each of those, I changed how I was acting and thinking about life. I didn't do a phenomenal job with all of it. But, I do have a much different outlook on life, relationships, everything. Have you experienced something that changed you for the rest of your life or shaped how you live it ? All the best to you and yours and always keep moving forward. #change #outlook #perspective #keepmovingforward https://www.instagram.com/p/CXDEW9QM9Hp/?utm_medium=tumblr

[livingwithaejp]

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Welcome to my world ! But i believe it is temporary for them...lucky them ! #pandemicbrain #brainfog #autoimmineencephalitis #livingwithae https://www.instagram.com/p/CW6rWzpgCE_/?utm_medium=tumblr

[livingwithaejp]

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that feeling when you are eating something soo tasty. What is your favorite meal? #food #corgi #foodstagram #corgilife https://www.instagram.com/p/CW4znS-sTUG/?utm_medium=tumblr

[livingwithaejp]

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I do understand what she describes as feeling like a burden because of past trauma, but i have also learned that not weak to ask for help. Contact a friend and just say hi or offer to do something specific. Make sure they know they can open up to you. All the best and keep moving forward !!! #trauma #traumahealing #mentalhealth #livingwithae #keepmovingforward https://www.instagram.com/p/CWzvD5xrbvG/?utm_medium=tumblr

[livingwithaejp]

Our generation, you know who I mean , is the generation that saw the technology emergence. The things we did before technology were things of legend. Street lights told us when to come in and if we snoozed that, mom would call us.  We would just cruise around the various hot locations to see what was up.  Hit the shore areas for sun and fun.  House parties, hanging at malls or skating rinks or arcades or all of those.  Fun fun times...

Luckily, there wasn’t any way to record the things we did.  Well… Until those huge camcorders came into existence or lugging around a tape recorder and microphone, or film cameras.  Remember polaroids lol.  But some used diaries which are now called journals. Marketing rebrands life I guess.

Journaling, then and now, is used by many people for their own sanity or posterity, or as requested by doctors during various treatments or for whatever reason one feels the need to write down thoughts.  Technology like Instagram, TikTok, some other apps, or just one’s phone has changed how one can journal.  Although, so do prefer the old pen and paper method.

So, do you journal? How so? Do you use your own book you made, a composition book, a journal friend made, or purchase one from stores online like from Etsy or Amazon?