#autoimmune disease warrior

[spookysalem13]

Had to be taken to the Emergency room this morning by ambulance. I'm so grateful 🙏 for the amazing medics at the Snoqualmie Fire Station 💕 they took really good care of me.

The doctor & nurses at Swedish ER were able to treat my pain at least for the next four hours. So I'm comfortable for now.

My heart condition episode I went into this morning due to my pain being so high, that I'm still battling with that has had me falling into the walls, jello legged nearly collapsing on the floor is being treated at home using remedies that I am to use when this situation arises.

I've been contacting doctors and clinics all morning as the ER doctor said I desperately needed to do. And I'm beyond appreciative of my rheumatology care team for straight up telling me that I need to be in bed resting and normally they'd have the patient make the calls and do the work but they're going to handle it all for me to try and get me some help temporarily while I wait to get into a pain management clinic.

I'm really hoping fingers crossed that today's the day I start getting some help for all the pain I'm in.

Luckily I got in and out of the ER pretty fast and the doctor was amazing and heard me loud and clear when I said I was in pain. She didn't hesitate to help me like so many doctors have in the past and for that I am truly so grateful 💜

Today I will be taking it easy and waiting to hear back from my care team hopefully with some good news.

[pained-princessluna]

Chronic illness be like: now our right knee is hurting

Me: ok. Is this a new accessory or should I get it checked out?

Chronic ilness: I don't know sis, sounds like a you problem tbh...

[thelupuslady]

[indyviree]

god, how i hate having lupus. everyone thinks im fucking helpless, and they underestimate me. and it fucking sucks because normally they're right. on certain days i physically can't participate in my hobbies bec i'm in horrible pain. because of it, people just think im lazy and disgusting. i can never win. i can't do anything right, i don't know why i thought i ever could.

[chronicillnessfromateensmind]

Pain Akin to a Flame

There was a girl I used to know a long time ago. A girl who marched to the beat of her own drum, whose chunky blonde highlights reflected in the sun, whose smile was made of wire and rubber bands, whose artistic capabilities were starting to expand. A girl who was starting to find her way, who was a painfully shy people-pleaser, and who was so excited for her future. A girl that was so blissfully unaware of everything that was about to come her way.

I wish there was a distinct series of actions leading up to when I first felt this pain, but there’s not. There isn’t a traumatic injury, no broken bones, no falls, no bruises, and no reason why this started. The days before were beautifully mundane spent doing the same monotonous daily routines and tasks. There was nothing extraordinary or memorable, and that infuriates me.

Rationally I understand that I shouldn’t be stuck on this hill, what happened has already happened, so why should I spend more time focusing on what didn’t happen? But irrationally, my heart can’t take the fact that there isn’t a particular reason to fault, and my soul turns black and blue when I realize that there isn’t an outside source to blame; the only one being my body itself.

When I wonder if there is a way to prevent what I went through from happening to anyone else, I don’t like the fact that I can’t answer.

The truth is I don’t know why this happened to me, I don’t know why I went to bed one night completely fine and then woke up the next morning in excruciating pain.

All I can recall is the sound of rain bouncing off my windowsill as my sleep-clouded mind tried to make sense of slipping from the comforting lullaby of unconsciousness. There was a slight chill in the air making me sink deeper into my mattress, and snuggling in the warmth my comforter provided. As my right leg came in contact with the same comforter, a pain jolted me awake.

Slightly disoriented still, I tried to rub the sleep out of my eyes as I threw the comforter off my body; the chill in the early spring hours biting into my skin in the process. Warmth akin to a fire felt as if it sat deep in my right thigh, a deep crushing ache in the center of it all. Confused, I tried to move and inspect the area only to find nothing to explain this smoldering leg pain.

Carefully, I stood up ever so slowly and began making my way downstairs. With every passing step and every inch closer to my target, I tried to recall if I had done anything the last couple of days to warrant this kind of pain. I came up empty.

Confused and frightened was the sight my mom was met with as I finally found her sitting in the living room with my baby sister. They say a mother's intuition is always right, and my mom could read me like a book; she knew something wasn’t right as I made my way toward the couch.

Trying to describe a pain I had never felt before was almost impossible, I had no words to describe the flaming pain I was experiencing. I tried to convey that my leg felt hot and ached like it never had before, my mom was concerned and told me to eat some breakfast and take some Advil or Tylenol to see if it offered me some relief.

I did just that. And an hour and a half later the pain was gone. A phantom, a ghost, a whisper forgotten. It was like the pain had never existed in the first place. Maybe I had just pulled something, or maybe I did something in my sleep, but whatever it was, it was gone now. I was free from the flames that flickered in my leg, and I was okay.

The next morning I woke up and wasn’t in pain, I was okay. Brushing off what had happened that morning as a one-off weird occurrence, I continued throughout the next couple of weeks like nothing had ever happened; the memory of it all fading to the back of my mind.

[autoimmunechronicles]

I know many of us can relate to feeling like a burden and even those dear get tired of being around chronically-ill people such us ourselves.

How do you cope with depressive thoughts?

[livingwithlupus614]

Unpopular opinion: Spoon Theory is not that great

[spookysalem13]

Oh how I've never related more. As a chronically ill person, I'm always aspiring to be someone, something. To do something and live a life I've always dreamed. Yet my illnesses prevent me from doing so much.

People often tell me I use it as an excuse. God, I wish it was one. Then it would be simple to get over it in comparison. But it isn't. I'm ill. And my life is different than others.

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[spookysalem13]

Chronic excruciating pain can fully kiss 💋 my a$$! I've been living like this my whole life. I'm tired 😫 I can't take this anymore! I'm livid, I'm angry, I'm PI$$ED OFF! Why don't doctors want to help you? 😒 They've been letting me suffer & I'm sick & tired of it!

I'm only 24 years old I shouldn't be stuck in bed! This is a load of BS! When my doctor hears from me today I make zero promises to be nice 😑.

I'm going to be as loud as I need to be until someone hears me screaming to death in tears from the inside 😭. I need HELP! I don't want this to be my life... why don't they get that?

Did doctors go to school to become heartless & dumb is that lesson number 1? How to make your patient suffer the most?

UGHHHHH! IM SO MAD! I'm snapping at the people I care about because I can't take living in my own meat suit anymore. How screwed is that?! I haven't slept for more than 3 hours a night in 8 months! Because pain insomnia is real! I can't even rest anymore because I can't get comfortable.

I'm so tired! I hurt everywhere all the time... I can't do this anymore. It's so much stress on me I'm burning 🔥 down from the inside.

[pained-princessluna]

Chronic illness be like:

On today's agenda, we are going to spend the entire day going through the alphabet, trying to remember someone's name we briefly ran into this morning.

[thelupuslady]

[spookysalem13]

People have called me lazy, they've called me selfish, they've told me to get over it already and that the world doesn't revolve around me.

I'm not lazy, I'm disabled. I'm not selfish, I'm taking care of my my health first. I don't think the world revolves around me. Just because people are used to my silence & my compliance, doesn't mean I think suddenly the world is all about me because I'm willing to say I'm sick, I'm ill, I'm in pain, I need help.

[chronicillnessfromateensmind]

My Life in Letters

Dear reader,

My life has been consumed with the notions and the anticipatory motions of inconclusive tests, and lifeless doctors offices, for the past four years. To deromanticize it, I have been begging and pleading with doctors and various professionals for four years; begging and pleading for at least one person to believe me.

If your life were a book, and you’d reach the teenage chapters, what would you expect? Well, I certainly had high expectations . Growing up I was obsessed with “coming of age” style movies. Most parts of my childhood were spent romanticizing and fantasizing about the kind of life, the kind of person I’d be when I was a teen. And I know it sounds silly, but to me all I ever wanted in life was to grow up. All I yearned for is a way to go to high school, make friends, attend parties, join clubs, and maybe even find someone to love. I know that no two teenage experiences are the same, but at least those people had the opportunity to be teenagers, I wasn’t given the option to have an all American high school experience. I wasn’t that lucky.

Your teenage years are meant to start out as a blank canvas, waiting for you to paint it with colors of experimenting, socializing, learning, growing, and self discovery. And while my canvas had hints of those colors too, it was unfortunately overshadowed by streaks of sorrow, agony, pain and grief.

We all understand how devastating and detrimental grief can be, but nothing can prepare you for the heartbreak that comes along with grieving the person you could’ve been. How gut wrenching it is to grieve lost experiences and stolen opportunities. How soul shattering it is to grieve the chubby-cheeked, blonde-haired child in me that died each time my voice was disregarded by someone in a white coat telling me there was nothing they could do to help me.

This isn’t a letter of hate directed towards any doctors or the medical community, no, this is a letter to raise awareness. Awareness for rare disorders, syndromes, diseases, chronic pain, and chronic illness is crucial in vocalizing the need for funding towards research. It’s crucial in attempting to improve access to treatment and getting the proper care for individuals. It’s crucial in shortening the diagnostic process, and it’s immensely crucial in ending the stigma that comes with living with one of these.

Awareness in general holds a special place in my heart; it’s one of my main motivations in life. It’s personal to me, for if the doctors around me understood the disorder I have, I wouldn’t have lost half a year paralyzed and bedridden when I was only 15 years old.

I think it’s safe to say living with chronic pain of any kind is awful, and I wouldn’t wish it on my worst enemy. However, no one really mentions how painfully isolating it can be. To put it simply, living with chronic pain, chronic illness, is exhausting. It’s taxing, both mentally and physically. The average person doesn’t understand that chronic pain steals so much from you, and the fact I have come to that realization so young isn’t fair. I shouldn’t be battling eight separate diagnoses at seventeen. But I am.

There’s this feeling that comes and goes, that originates from the depths of me. A feeling I’m more acquainted with than the friends I grew up with. It’s beautifully tragic, magically horrific; it’s tear jerking, mind numbing hopelessness that is all consuming. I guess that’s part of why I’m writing this letter, because finding a community that understands exactly what you’re going through; that relates to a mutual understanding of your experiences is incredibly validating, and helps ease that hopelessness just a little bit. Living with a rare disorder, disease, syndrome, chronic pain, chronic illness is extremely isolating, so when you find people who understand your pain, understand your sorrows, understand your grief, it’s a major relief.

I also wanted to write this to serve as a form of healing for me, because while I live with eight separate diagnoses , I am not them. You see, I was diagnosed with amplified musculoskeletal syndrome at 15. That same year I was diagnosed with Functional neurological disorder and chronic regional pain syndrome. A few weeks short of my 17th birthday I was diagnosed with post orthostatic tachycardia syndrome, a day later diagnosed with chronic fatigue. Fast forward a few months later, and I was diagnosed with chronic autoimmune urticaria; I’m currently undergoing tests to determine if I have hypermobility ehlers dohlers syndrome as well as mast cell activation syndrome.

Sometimes I wish I wasn’t surrounded by the diagnostic process, and often more times than not wish I didn’t have to beg to get diagnosed in the first place. But when the anxiety clears, and the overthinking pauses, I realize that I’m not defined by my diagnosis.

Yes, they’re a part of me, but they aren’t me.

I am so much more than my disorder, than my disease, for I am creative and intelligent, compassionate and kind, resilient and optimistic, beautiful and wise.

Throughout these past four years of being in constant pain, sitting through countless doctors appointments, awaiting for the results of tens of inconclusive tests, feelings of pure hopelessness, fatigue, fear and anxiety. I have come to the conclusion that when you allow yourself to be defined by your diagnosis, that’s when you lose the battle to it.

I’ll never know the reason why you picked up this letter, perhaps you like the cover art. Or maybe, a friend recommended it; maybe you live with one of the conditions I have and are looking for someone to relate to. Whatever the case may be, I’m glad to have you here. My hope for you is to immerse yourself into my experience, and maybe learn a little on the way.

Happy readings,

Kenzie.

[autoimmunechronicles]

Recently, I find myself having to 'prove' my disease, symptoms, and pain to others as though to make them and myself believe that it's INDEED real. (to my fellow warriors, your disease and pain is enough-- you're enough)

I feel in my bones the doubts and judgements (even myself) that sows the seeds of negative emotions affecting my mental health.

Why does my disability have to be recognized and supported in the first place?

Here are my thoughts:

I DO NOT have to prove my pain and disease to anyone -

My "invisible" but very real, unimaginary illness exists. I feel pain 24/7. Some people do not (even try to) understand and have a distorted and disproportionate expectations.

2) We just want the support of the people dear to us.

People surviving with chronic illness face challenges that are inconceivable to normal and/or healthy people.

Often times, family and friends tend to make insensitive or thoughtless remarks or even requests that exhaustively impact our well-being.

3) We are dis-ABLE-d

Inspite of the awful unpredictable nature of autoimmune diseases, there are moments, hours, or even days of "low pain". Sometimes it lasts for a short period of time, sometimes not.

Personally, whenever I do not feel crackling pains, (chronic & extreme) fatigue, weakness and have all the limited energy (SPOONS) to move around and carry out chores, I DO THEM. I AM ABLE TO DO THEM.

To put it briefly, even through pain, I can carry out chores that I DEEM AM ABLE TO ACCOMPLISH. Otherwise, I will NOT carry through or postpone the tasks / activities.

In my experience, I do feel that I am a burden when it comes to contributing to house works and chores nowadays. I am not WHO and WHAT I used to be -- as much as I want to move I feel extremely guilty for not being able to do so. But I do remind myself that autoimmune in general cannot be prevented and there's only so much that I can do.

THAT IS WHY when I CAN, I DO.

4) Stop putting labels and words in our mouths:

When we are trying to help out and contribute, please do not be so insensitive as to say what we CAN and CANNOT do.

Believe us when we say we wen and DO NOT ASSUME THAT WE CANNOT.

Example: You see us washing the dishes then suddenly you would remark "You are not able to do that." YES WE CAN, WHEN WE CAN.

Yes we are disabled and each and every one of us have different diagnoses, symptoms, limitations -- but we continue to fight and make things work everyday. Chronically ill people are creative, smart, innovative, and are masters of life!

We are only disabled because of our illness and its complications which might prevent us to perform, live, and interact with the rest of the world in what's perceived to be in a normal way.

But please, we will appreciate it if we you can also give us the space to fully appreciate being ABLED.

Caveat: Please do not gaslight or get AGGRESSIVE and make degratory remarks or make your loved one feel guilty for not being able to perform normal tasks that may seem easy, fast, or normal to you.

In my case, I am able to cook, clean, and do chores but in a very, very slow and painful phase requiring rest every 5 minutes as I tend to be fantastically exhausted.

(Yes, 10 steps is exhausting enough for me. Legs crack up, lungs requiring deep breathes. But I STILL DO, I endure when I can.)

5) We appreciate all the emotional, physical, and financial support extended to us

Every single effort to help, support, and understand our condition is wholeheartedly appreciated!

Most importantly, especially to the family members, it would mean a lot if we can make an effort to really learn and work on knowing the specific autoimmune disease your loved ones have.

We are also trying to learn more about our disease everyday. Autoimmune is still a big mystery even to the medical community.

6) We DO NOT NEED unsolicited advise or opinions you heard online from herbal doctors or those who are "HEALED" or "CURED" of the disease

We do understand that a healthy and balanced diet is important but you also have to remember that:

+ Autoimmune diseases are incurable. It can only be managed.

+ Each patient / fighter are experiencing different symptoms. No TWO LUPUS patients' experiences and symptoms and treatments are the same.

+ There is no "GETTING BETTER." We do not enjoy the pain, but realistically, this only upsets us.

+ If there was one single herb and diet restrictions that works, all of us would have been cured, healed.

Nonetheless, we know your intentions mean well! :)

[pa3ch]

There are days it feels like this for me and other days, it’s acknowledging the fact I’m still alive and feel like my 80yo great- grandma with no filter dropping f bombs everywhere.

Seriously, not to brag or anything, but I did make it out of bed today, even though I didn't want to move. I didn't want to get up, I didn't want to take my meds, and I just wanted to disappear today. Multiple Sclerosis makes me feel weak and tired most days, but I get out of bed, I take my meds, and they help me to have a fulfilling day!