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This isn’t something I feel prepared to or wanted to share yet, but I’ve been getting a lot of questions/comments (about school, Work, how I must be doing so well) that are hard to respond to without sharing this truth. I don’t want your pity or sympathy. I don’t need your negative comments either, or even your positive ones tbh, I almost wish I could disable comments for this post
.
Here we go:
I withdrew from graduate school two weeks after starting, due to my health. I then attempted to start working part time and I had to quit, due to my health. Things, clearly, haven’t been going as planned. And in my brain, they haven’t been going well at all. It’s been a mix of loss, fear, tragedy, inadequacy, comedic circumstances that this all could even be happening. This is the fourth time I’ve hit what’s felt like rock bottom in almost 6 years. But it’s clearly not truly rock bottom yet because I haven’t gone up
.
I don’t share how bad my days are, how much my symptoms truly control my life, or these “hurdles” I keep facing because I don’t want my page to be filled with negativity (Always remember, social media is a snapshot). I can post more about it if you’d all like, though
.
I’ll continue to post recipes and treatment updates and try to keep a general positive vibe because I WANT TO. I want to share good things and try to inspire and help, but my life and my reality- being chronically ill- is not easy or pretty. I’m relatively low right now, I have no idea what’s happening with my life, and I’m in the process of figuring out what the next steps are- mainly on a mission to get some freaking answers about my body!
.

There are many of you (both spoonie and non spoonie friends and family) who i haven’t connected with in awhile or had time to respond to. Hopefully this gives some insight into why. So, please, bare with me, there’s a lot of transition and life learning happening over here 🙋🏼... and damn it ain’t easy!

Hey guys, it took a lot for me to actually post this but here it goes. I was diagnosed with chronic Lyme Disease - a disease normally treated as a mild acute infection and unrecognized in chronic form. That being said, the CDC guidelines of what Lyme is and how it should be treated are completely and utterly inaccurate. That is one of the main reasons I went undiagnosed for over a year and a half while I've had debilitating symptoms affecting both my heart and brain. Since the CDC doesn't recognize the severity of this disease, most of my treatments are not covered by insurance which is why I have made a funding page (link in bio) and if you could help me out it would mean the world to me. Thank you! #lyme #fucklyme #lymewarrior #fightlikeagirl #lymedisease

I'm sorry, but going through chemo made me feel less nauseous then this IV therapy. #chelation #glutathione #FuckLyme

I'm not going to lie...this Lyme thing ain't easy. Some days (I.e. Yesterday) the anxiety is over the top and I just shut down. But I know you have to keep moving forward. My joints hurt and my muscles fatigue super easy...so my running has been limited to really flat trails. But it's a run to clear my head at least and a walking meditation on the way back. To anyone suffering with Lyme, anxiety, depression...just do all you can to keep fighting. Take care of yourself. And don't give in to any of it. For what it's worth I got your back. #fucklyme #fuckanxiety #govegan #jivamuktiyoga

I ❤️ Pizza!
The past years my pizza dates existed out; eating pizza at home, in bed or on the couch with friends. But this time I was able to go to a restaurant😍! I'm still getting a smile on my face when I think back about that evening😋. Ok. This sounds too cheesy 😂. Bye 👋🏼 #throwback #pizzadate #invisibleillness #lymedontkillmyvibe

#insidemybones #fucklyme #croniclymedisease sease puur natuur laten zien hoe het leven kan zijn dit is een stukje van mijn leven puur natuur met dank aan een stukje uit de natuur. #morgennieuwedag

No vest would be complete without. #fucklyme

#lymewarrior #lymedisease #leathervest #harleydavidson

My head is a very dark and not so safe space right now. I’m emotionally and mentally paralyzed. I can’t talk, I can’t be talked to, I can’t be touched or make eye contact, I can’t feel ANYTHING..... I am completely disconnected from myself and my life. I’m confused. I feel lost. I’ve been trying to upload these pics and write a caption for over 15 minutes. I just CANNOT. The only thing I know how to do right now is be alone. My brain is a torture chamber. #lymedisease #neurologicallyme #neuroborreliosis #strugglingtosurvive

Avril was talking first time about her lyme disease on Good Morning America 29.06.15.. We're happy she said she always was looking posts by little black stars.. You're so strong woman @avrillavigne 💪❤ Plus : We Love You So Much💜💜 #avrillavigne #littleblackstar #avrilthrowbacks #fucklyme #goodmorningamerica @avrilbandaidsofficial

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Hey guys, it took a lot for me to actually post this but here it goes. I was diagnosed with chronic Lyme Disease - a disease normally treated as a mild acute infection and unrecognized in chronic form. That being said, the CDC guidelines of what Lyme is and how it should be treated are completely and utterly inaccurate. That is one of the main reasons I went undiagnosed for over a year and a half while I've had debilitating symptoms affecting both my heart and brain. Since the CDC doesn't recognize the severity of this disease, most of my treatments are not covered by insurance which is why I have made a funding page (link in bio) and if you could help me out it would mean the world to me. Thank you! #lyme #fucklyme #lymewarrior #fightlikeagirl #lymedisease

Hiran Deraniyagala, guitarist for Battlecross performing a few years ago in Maine. ⠀

If you like these photos, please take a moment and like and follow my instagram page @jolesphoto

Taking my life back from Lyme disease, one photo at a time! 💚⠀

#mainemusicnews #chrisjoles #jolesphotography #nikon #nikonusa #nikonphotography #livemusicphotography #concertphotography #lymesux #fucklyme #lymedisease #lymewarrior #chroniclyme
#htbarp

Photo © Christopher Joles www.facebook.com/memusicnews - ⠀
No Commercial Use without permission⠀
Social Media sharing is appreciated

This is love. I LIVE for this. Today's been full of stress, puking doctors and chaos. The thing that holds me together is this angel.. my baby. Knowing I'm coming home to do homework with you, cook and play with you. I love you babygirl. Mommy will ALWAYS push hard for you. #worthit #getbettersoon #fuckdisease #fucklyme #lyme #lymedisease #LYMEUNCENSORED #disease #invisableillness #illness #disabled #filipina #cute #kids #iloveyou #cutekids #cutie #momlife

I know we often say to never look back, that’s not where we’re heading. I can’t help but believe that to be true, also knowing that a contradicting truth can be said as well..
Look back at where you once were, the battles you faced, the challenges you overcame, even the defeats that knocked you down—look back with the wisdom you did not have then. Look back at the strength and character you have developed, as hardships often push us forward into uncomfortable spaces to face ourselves. Look back with immense gratitude: for the learning, for the self-improvement, for the appreciation that no matter how often we fail, mess up, run, and hide from the hardest lessons, we will eventually conquer our own roadblocks and resistance. We will climb that mountain of doubt because of sheer determination to do so.
Living in the present moment is a beautiful way of living, as is reflecting on how we got here. To never lose sight of the monsters, ghosts, and darkness that we all have within. Our stories may look different, we may have taken different paths, and we may see things differently—and that is ok. Knowing where I once was, and how far I have come only deepens my compassion for all. Those who are currently battling demons, those who are complacent and stagnant, those who have closed off their hearts and souls to their highest potential. It doesn’t matter where you are at, it matters that you are here.
Where I am today, who I am today, is so very different from 2 years ago. Same soul, different mindset, different perspective, just different. 2 years ago I was being admitted inpatient to Georgetown Hospital for a chronic cycle of pain that was relentless. It started September 17, 2015—to this day I have not had a day without physical pain. I was in the midst of nursing school and recall driving from one hospital where I had clinical, to another hospital where I would be the patient—the sun was rising and I said to myself.. “I too will RISE UP again.” I was urged by the medical team to stay for my last 3 treatments, I dismissed them given my gut told me that this was not the answer *plus I had to be back at clinical otherwise they’d fail me for the semester*continues⬇️

One more of Tom Keifer. It was announced he is feeling better and will resume touring next week. ⠀

If you like these photos, please take a moment and like and follow my instagram page @jolesphoto

Taking my life back from Lyme disease, one photo at a time! 💚⠀

#mainemusicnews #chrisjoles #jolesphotography #nikon #nikonusa #nikonphotography #livemusicphotography #concertphotography #lymesux #fucklyme #lymedisease #lymewarrior #chroniclyme
#htbarp

Photo © Christopher Joles www.facebook.com/memusicnews - ⠀
No Commercial Use without permission⠀
Social Media sharing is appreciated

Lyme update: 7:45am

After 14 hours in the ER, I got my room later last night and was finally able to eat. I developed a reaction to the vancomycin just before the procedure with redness and swelling being present. Received more vanco around midnight, but a slower drip and thankfully not as bad of a reaction.

I've had 2 dressing changes now, they are unable to suture back up due to infection so it just gets packed with gauze until all cleared, pretty cool to watch. Then once better, we talk about receiving another port at a later date to continue IV therapy. Still waiting on port cultures to come back
Oh also my lovely nurse took it upon herself to wear an eye- splash guard when she comes in my room because apparently I'm now at risk for exposing her and the staff, since my infection of unknown origin is zoonosis(not unknown, from Australia), then diagnose me with what I 'really have going on'(apparently now it's a post Dengue infection, which I got dengue way after Lyme ), since my diagnosis of chronic lyme doesn't exist and going to all these different clinics and hospitals make 'no sense'. Thankfully her shift is over now and a shout out to my 2 surgeons, my intermal medicine doctor, and the new charge nurse who overheard as they were walking in, as she went on another oh so informative rant and pulled her out before I ripped my IV out and teach her a lesson after 12 hrs of arrogance and bullshit.
I'm here for staph, not Lyme. We're not treating Lyme here, it's just a secondary infection.
#fucklyme #chroniclymedisease #LymeAwarness

After 14 hours in the ER, I got my room later last night and was finally able to eat. I developed a reaction to the vancomycin just before the procedure with redness and swelling being present. Received more vanco around midnight, but a slower drip and thankfully not as bad of a reaction.

I've had 2 dressing changes now, they are unable to suture back up due to infection so it just gets packed with gauze until all cleared, pretty cool to watch. Then once better, we talk about receiving another port at a later date to continue IV therapy. Still waiting on port cultures to come back
Oh also my lovely nurse took it upon herself to wear an eye- splash guard when she comes in my room because apparently I'm now at risk for exposing her and the staff, since my infection of unknown origin is zoonosis(not unknown, from Australia), then diagnose me with what I 'really have going on'(apparently now it's a post Dengue infection, which I got dengue way after Lyme ), since my diagnosis of chronic lyme doesn't exist and going to all these different clinics and hospitals make 'no sense'. Thankfully her shift is over now and a shout out to my 2 surgeons, my intermal medicine doctor, and the new charge nurse who overheard as they were walking in, as she went on another oh so informative rant and pulled her out before I ripped my IV out and teach her a lesson after 12 hrs of arrogance and bullshit.
I'm here for staph, not Lyme. We're not treating Lyme here, it's just a secondary infection.
#FuckLyme #ChronicLymeDisease chronicillness #bartonella #neuroborreliosis #CFS #lymiesunite #LymeDiseaseAwareness
#LymeDontKillMyVibe

This isn’t something I feel prepared to or wanted to share yet, but I’ve been getting a lot of questions/comments (about school, Work, how I must be doing so well) that are hard to respond to without sharing this truth. I don’t want your pity or sympathy. I don’t need your negative comments either, or even your positive ones tbh, I almost wish I could disable comments for this post
.
Here we go:
I withdrew from graduate school two weeks after starting, due to my health. I then attempted to start working part time and I had to quit, due to my health. Things, clearly, haven’t been going as planned. And in my brain, they haven’t been going well at all. It’s been a mix of loss, fear, tragedy, inadequacy, comedic circumstances that this all could even be happening. This is the fourth time I’ve hit what’s felt like rock bottom in almost 6 years. But it’s clearly not truly rock bottom yet because I haven’t gone up
.
I don’t share how bad my days are, how much my symptoms truly control my life, or these “hurdles” I keep facing because I don’t want my page to be filled with negativity (Always remember, social media is a snapshot). I can post more about it if you’d all like, though
.
I’ll continue to post recipes and treatment updates and try to keep a general positive vibe because I WANT TO. I want to share good things and try to inspire and help, but my life and my reality- being chronically ill- is not easy or pretty. I’m relatively low right now, I have no idea what’s happening with my life, and I’m in the process of figuring out what the next steps are- mainly on a mission to get some freaking answers about my body!
.

There are many of you (both spoonie and non spoonie friends and family) who i haven’t connected with in awhile or had time to respond to. Hopefully this gives some insight into why. So, please, bare with me, there’s a lot of transition and life learning happening over here 🙋🏼... and damn it ain’t easy!

Lemmy says, “Happy National Pug Day!”⠀

If you like these photos, please take a moment and like and follow my instagram page @jolesphoto

Taking my life back from Lyme disease, one photo at a time! 💚⠀

#mainemusicnews #chrisjoles #jolesphotography #nikon #nikonusa #nikonphotography #lymesux #fucklyme #lymedisease #lymewarrior #chroniclyme
#htbarp#nationalpugday #pugday

Photo © Christopher Joles www.facebook.com/memusicnews - ⠀
No Commercial Use without permission⠀
Social Media sharing is appreciated

I ❤️ Pizza!
The past years my pizza dates existed out; eating pizza at home, in bed or on the couch with friends. But this time I was able to go to a restaurant😍! I'm still getting a smile on my face when I think back about that evening😋. Ok. This sounds too cheesy 😂. Bye 👋🏼 #throwback #pizzadate #invisibleillness #lymedontkillmyvibe

Get Well Soon! Eddie Trunk just announced that Tom Keifer has been hospitalized for undisclosed medical issue. ⠀

If you like these photos, please take a moment and like and follow my instagram page @jolesphoto

Taking my life back from Lyme disease, one photo at a time! 💚⠀

#mainemusicnews #chrisjoles #jolesphotography #nikon #nikonusa #nikonphotography #livemusicphotography #concertphotography #lymesux #fucklyme #lymedisease #lymewarrior #chroniclyme
#htbarp

Photo © Christopher Joles www.facebook.com/memusicnews - ⠀
No Commercial Use without permission⠀
Social Media sharing is appreciated

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