#asawareness

[inmyskin13]

Today is one of those days guys. I’m exhausted and everything hurts. I haven’t gotten much sleep lately due to painsomnia and I can feel myself crashing. It’s time for some self care! Which for me means resting and rehydrating! I’m glad that I’m learning to listen to my body. You’d think by age 38 I would have learned that already but for a long time I didn’t listen until I would physically crash. I guess that’s just part of being in denial with chronic illness. I hope everyone has a great Sunday whether your resting or not. . . . If you have time today, and you haven’t read my first blog entry post, please do! The link is in my bio! . . .Follow me @khronikallykarly . . . . #khronikallykarly #relaxday #chronicillnessawareness #chronicpainwarrior #dysautonomia #pots #potssyndrome #potsawareness #ankylosingspondylitis #asawareness #disabledandcute #selfcare #selfcareday #selfcareisntselfish #teamnosleep #chronicfatigue #chronicfatiguesyndrome #cfs #cfssucks #meawareness #imnotlazyimsick #disabilityadvocate #chronicillnessadvocate #chronicillnessblog #ptsdawareness #ptsd #ptsdsurvivor #traumasurvivor #rechargeyoursoul (at Houston, Texas) https://www.instagram.com/p/B7PLceRAezg/?igshid=ks2vgnz8otje

[welcome-to-gaytown]

yall it is 9.49 pm and i am out of it

someone come anchor me bro

[tam8374-blog-blog]

Hello,

I had mentioned in earlier posts, that I was following Spondylitis Association of America as part of a class assignment.  At the beginning of the semester, I made sure that I was following their Facebook page, which I already was since I have AS.  I also started to follow them on Twitter and Instagram as part of the Assignment.  When I went to their actual web page, www.spondylitisassociation.org, I even signed up for their email newsletter on April 19th.  On April 20th, I received my first installment of the newsletter, the eSun (Electronic Spondylitis Update Newsletter).  The eSun included updates about their projects to raise awareness, talk about upcoming seminars and mention the work that Dan Reynolds was doing with www.thisaslife.com

I don’t recall seeing the May edition yet, but I’m not sure if the newsletter is monthly or quarterly.  

However, I did receive mail from the Spondylitis Association of America.  Since the Spondylitis Association of America is a non profit, they have to get their funding from private donors, grants, etc.  So the mail that I received is a request for donations.  (See Pictures attached). 

At current date, there are no cures for people, like myself, with AS or any other form of Spondylitis, so please help us spread the word  or make a donation to our cause and fight for a cure.

[chiefdreamlandduck]

"Send Asawar Sweets Special to your loved ones to make them feel special on this Eid. Mithai make your events sweet and delicious. Send this amazing gift to your beloved in Islamabad, Rawalpindi, Lahore, and Karachi.

[quiachelm-blog]

The movie can likewise function as signs to help eliminating hook motorists on off your community the roadways, therefore protecting everybody. After acute automobile accidents in the streets, we're hearing Police Crash Investigators on Tv or television telephone around the general public to get Dash Cam footage.

[inmyskin13]

The worst feeling to me is to disappoint someone I love. Unfortunately, with chronic illness you learn that you might disappoint people unintentionally. Sometimes I can’t stay long with a friend etc because I never know when I’m not going to feel well. I’m very lucky I do have a friend who will come and hang out with me at my house instead of going out @deannimal90 and I appreciate that so much. When I was growing up, I didn’t talk to my father about my feelings at all, including when I was sick. Talking about your emotions or symptoms wasn’t encouraged by him. My mom always encouraged me to talk about it luckily or I would have been a lonely kid. I’ve come along way with learning communication and I’m more honest now than I’ve ever been. I think I need to worry less about disappointing people and commit to being more honest with others about how bad my chronic illnesses get. Being honest is the only way understanding can happen. . . . . . #khronikallykarly #chronicillness #pots #potssyndrome #dysautonomia #dysautonomiaawareness #chronicallyill #ankylosingspondylitis #ankylosingspondylitisawareness #ankylosingspondylitiswarrior #asawareness #blogger #alvintx #sickandtiredofbeingsickandtired #spoonie #spoonielife #spooniewarrior #thespoontheory #disabledlife #disabilityawareness #disability #disabilityadvocate #disabledgirl #alvintexas #chronicillnessmemes #chronicillnessblogger #houstontx #houstontexas #houston (at Alvin, Texas) https://www.instagram.com/p/B7K3EAZgREO/?igshid=88nqqmcto8ds

[inmyskin13]

I will no longer argue with people that are committed to misunderstanding me. My body and mind will no longer allow it. Self care includes protecting my energy from negativity. Those that really know me know the challenges I face, and know my heart is always in the right place ✌🏻✌🏻✌🏻 . . Follow me @khronikallykarly . . . . #kindredspirits #noneedtoexplain #chronicillness #dysautonomia #potssyndrome #ankylosingspondylitis #spoonielife #asawareness #potsawareness #spooniewarrior #tachycardiaproblems (at Houston, Texas) https://www.instagram.com/p/B7FKO6HlOT-/?igshid=1ekwm94l9ulta

[inmyskin13]

Thank god for photo filters. Chronically ill girls best friend. This is not how I really look at all but if SnapChat says so 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️ . . . Follow me @khronikallykarly . . . #chronicfatigue #invisibledisease #chronicallyill #spoonielife #potssyndrome #potsawareness #spoonielove #dogmomlove #strongwomen #anxietydisorder #bloggerlife #bloggergirl #fibrowarrior #bloggersofinstagram #ankylosingspondylitis #asawareness #chronicillness #invisibleillness #dogmomaf #mentalhealth #mentalwellness #mentalhealthadvocate #mentalhealthawareness #PTSDsymptoms #nostigma #depression #mentalhealthwarrior #dogmomlife #mentalhealthblog #intuitiveliving (at Alvin, Texas) https://www.instagram.com/p/B7ERKKLFvKJ/?igshid=1rs4zmogxy8nf

[tam8374-blog-blog]

Social Media Posts by Spondylitis Assoc. of America

Spondylitis Association of America has made a few Facebook posts in the recent week.  

On May 6, World AS Day, Spondylitis Association of America Posted a video on Facebook about Imagine Dragons lead singer, Dan Reynolds.  Dan is on a mission to let others know about AS.  In this video he chats with a rheumatologist, Hillary Norton, who also has AS.  Check out this ThisASlife.com to see this video and others and see what else Dan is working on.

May 7th on Twitter they retweeted a post by Health Central.

May 8th, they actually hosted a live Facebook web chat with doctors from Hospital for Special Surgery and they also offered a  free Spondyloarthritis Educational Symposium NYC on May 11th!  For more info, check out this website: http://www.spondylitis.org/Seminars-and-Webinars 

May 9th they posted a question on Facebook potentially to anyone who follows their page, which I assume is mainly people with AS or other forms of Spondylitis.  There were about 56 different answers.  Fatigue is a huge issue that people with auto immune diseases suffer with.  Regardless the amount of sleep we get, we are always tired.  

Their Instagram page hasn’t had any recent activity to post about.  www.stopAS.org is listed in one of the last pictures that they posted.

So those are just a few of the things that the Spondylitis Association of America is doing to get awareness out to everyone about Spondylitis with social media.  

[tam8374-blog-blog]

Spondylisits Association of America’s purpose to is to educate people about Spondylitis and the month of May is AS (Ankylosing Spondylitis) awareness month.  

Part of the awareness campaign that the Spondylitis Association of America is doing is providing anyone who asks for them, some postcards to mail to healthcare professionals who may need to more about AS.   When I saw they offered those as part of their awareness program, I asked them to send me some postcards.  I received my postcards (see picture) and I proceeded to mail them out as well.   So not only is Spondylitis Association of America getting the word out on AS, so am I.    #LivingwithSpondylitis

[inmyskin13]

It’s very hard to look at pictures of myself. I don’t even look the same. Chronic illness has sucked the color and life out of my face. I used to get up and put makeup on, but I no longer have the strength to do that. Even showering has become a huge event because I cannot stand long without feeling dizzy from #tachycardia. It’s so hard to be positive when your life is changing without your consent, and not for the better. I feel like I have nothing to look forward to. I have no children due to my disabilities, and my longtime boyfriend @sonofahick and I cannot get married because if we do I’ll lose my disability benefits. Looking at these photos, I guess I just have to be grateful that I was happy and somewhat healthy once? Is that how I’m supposed to feel? Because that’s not how this feels. This feels like the death of who I was, without offering any hope of who I could be. So I will exist here until I’m numb to all of this, which may or may not happen. Grief is a bitch. Ive grieved the sudden death of my husband and the death of my best friend, just to name a few. I think this grief hurts the worst because I no longer recognize the person in the mirror. . . . .Follow me @khronikallykarly . . . #khronikallykarly #grievingmyself #grievingmyhealth #chronicillnessawareness #mentalhealth #mentalhealthawareness #potsawareness #chronicallyill #mentalwellness #mentalhealthadvocate #nostigma #mentalhealthblog #chronicfatigue #spoonielife #invisibledisease #spoonielove #bloggerbabe #bloggergirl #chronicillness #bloggersofinstagram #ankylosingspondylitis #potssyndrome #traumasurvivor #asawareness #depression #chronicpain #youngwidow #youngwidowsclub #invisibleillness (at Houston, Texas) https://www.instagram.com/p/B7W6RS7gaJD/?igshid=1mljhorbql1d2

[inmyskin13]

Sadly, there are so many disabled people out there that don’t have access to pain medication because of societies black or white thinking. The thought that every single person who needs to take pain medication for physical reasons is abusing them is ridiculous. This is one reason I support marijuana legalization. If they won’t allow us pain relief through big pharma, we WILL substitute it with something! I honestly don’t worry about being judged anymore for having a chronic illness that severely affects my life. I will not make any apologies for my disabilities. . . . Follow me @khronikallykarly . . . . #khronikallykarly #noapologies #bloggergirl #bloggerlove #bloggersofinstagram #mentalhealth #mentalhealthawareness #mentalhealthhelp #mentalwellness #mentalhealthadvocate #mentalhealthblog #mentalwellbeing #mindshift #selfawareness #selfgrowth #inspiredaction ##fibromyalgia #chronicfatigue #invisibledisease #spoonielife #painmanagement #fibrowarrior #ankylosingspondylitiswarrior #pots #dysautonomia #spooniegirl #potsawareness #asawareness #epsteinbarrvirus (at Alvin, Texas) https://www.instagram.com/p/B7MuSeUgcoa/?igshid=bod98xbzxpcl

[inmyskin13]

And California never felt like home to me, California never felt like home. And California never felt like home to me until I had you on the open road, And now we’re singin’....@iamhalsey . . . Music has always been therapeutic to me when trying to keep #PTSDsymptoms away. Sometimes turning on some jams can lift my mood rather quickly! Whose music inspires you or helps you combat your #depression symptoms?? . . . . . #halseylyrics #drive #invisibledisease #chronicallyill #spoonielife #potssyndrome #potsawareness #spoonielove #chronicfatigue #dogmomlove #bloggerlife #chronicillness #strongwomen #anxietydisorder #fibrowarrior #bloggerbabe #bloggersofinstagram #bloggergirl #ankylosingspondylitis #asawareness #invisibleillness #dogmomaf #nothingisordinary #mentalhealth #mentalwellness #mentalhealthadvocate #mentalhealthawareness #nostigma (at California) https://www.instagram.com/p/B7ECbEWlEP_/?igshid=11kqsfwon1gfr

[tam8374-blog-blog]

World AS day

Today is world AS day! This day focuses on raising awareness for the disease, Ankylosing Spondylitis. I'm always doing what I can to raise awareness. I have a t-shirt and hoodie that has A.S. information on them and my Facebook profile picture mentions A.S. I do several posts monthly and talk to people about it. Until recently, we did not presently have too many well known celebrities to help spread the word about A.S. Ed Sullivan, TV personality had AS and lead guitarist of Motley Crue has AS. More recently a celebrity that may be more well known at this time that was recently diagnosed is Dan Reynolds, lead singer of the rock group Imagine Dragons. Dan is doing what he can to held spread the word about A.S. He meets with various people who have AS and he posts the videos online and social media. He tells a lot of people personally and through social media. Today, in honor of World AS day, Spondylitis association of America posted Dan's most recent video, on their Facebook page. Here is link to the post containing the video they posted: https://m.facebook.com/story.php?story_fbid=10155209520367970&id=20335867969. Now I will share this to also help raise awareness. #WorldASday #livingwithspondylitis #ASawareness