"Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity..." - Melody Beattie
I love this quote. There is so much truth in this, because when we are not grateful, everything seems dark and negative. But when we are grateful, even for the little things, your worries and doubts suddenly don't seem as bad as you initially thought and it allows so much more room for clarity.
"Don't give up because of one bad chapter in your life. Keep going, be your story doesn't end here." - Source: Unknown.
The main thing that keeps me going when the times get rough is knowing theres a whole world outside of my current situation that I have yet to explore. All wonderful corners of the earth, just waiting for me to discover and enjoy.
Travel is a huge dream of mine and knowing that my current situation is 'temporary' is truly calming. If you are going through a rough patch, just know that better things are coming ✌
This things are all so true, especially the things about doctors. Thursday I saw my neurologist who sees me for my epilepsy, but I had made an appointment to see him about new things that had been going on, not related to my epilepsy at all. We start talking and he says "Whats going on?" I explain to him the things that have been happening, well I start to... he didn't have time to hear it... he waves his hand at me and says "Yea, yea, yea I get it." I just sat there in silence, thinking "What? What do you get? I just started!!?!!" Then something jogged his memory and he says "Oh youre the one with Addisons" WTF!?! No answers, no help, in fact I feel like I just got pushed back... I understand that Drs went to school and have training, but I feel like when it comes to a chronically ill patient, we're different, a lot different, and I feel like Drs dont want to go outside their "comfort" area to help a patient figure out what the is happening!! Theyre are good Drs out there, but theyre like gems, so when you get one, hold tight & dont let go. #listentome #myjourney #myjourney #mymedicaljourney #spoonie #spoonielife #chronicillnessfighter #chronicillness #chronicallyfabulous #autoimmunedisease #autoimmunediseasewarrior #addisonsdisease #doctorsdontknoweverything
A friendly reminder to take time out for yourself, to be WITH yourself and enjoy some time alone.
Go for a walk, to the beach or go for a drive. Be with your thoughts or just simply just be. Try to enjoy your own company - maybe people watch, read a book, go for a coffee or just listen to the waves crashing on the shore.
Being around people is nice and all, but taking time out to be with yourself can be truly healing. Having time alone allows time for self discovery and self awareness.
I don’t usually post selfies. But this is me today. Tired. Couch-bound.
Yesterday was a little scary.
When I arrived at the infusion center in the morning, my resting heart rate was 120. I was experiencing pre-syncope when I stood up. Fatigue made all of my muscles feel heavy and weak.
The bag of fluids helped. I’m feeling better today, but still fatigued and not tolerating being upright for very long.
I still have no idea why this happened. I could try to play detective, but I’ve learned that trying to figure out a flare is pretty futile. Because it could be anything. It could be a combination of things. It could be things completely out of my control. Trying to figure it out is only going to waste my energy. The best thing for me to do now is to rest and take care of myself.
For the past several months, my POTS symptoms have been pretty well managed. Most days my resting heart rate is in the normal range. I don’t feel as lightheaded and weak. Most days, I’m able to exercise. I haven’t experienced pre-syncope in months.
But before I started treatment, EVERY DAY was like yesterday.
Honestly. Sometimes I’m just amazed by how much physical misery a human being can withstand and not actually die 😅 Like, I can’t believe I lived like that for as many months as I did.
My heart goes out to all of the POTSies out there who aren’t diagnosed yet, to those of you who haven’t found effective treatments yet, to those of you who may be in a flare up like me right now. It’s not your fault. And you’re not alone ❤️
When you read this post, what was your first reaction?? Did you want to say “Kayla, you are crazy, I feel like a burden at all times with my illness!” Don’t feel bad because I do too. When I got sick, I tried very hard to just not tell anyone, to rely on myself, and try not to burden others. Then I got worse and had to involve others. I wasn’t able to drive anymore, so I had to ask for rides to every appointment, and still do. I absolutley hate it, but it is completely out of my control and I wouldn’t want to get behind the wheel and risk hurting someone else. I feel like a burden to my family and friends daily! I feel like I am annoying to my family and friends daily! There are times where I just feel like I don’t belong and most/all of them would do better without me in the picture? Any of you ever have any of these feelings? They are hard to not think about right?? Check out the link in my bio for more on this story 📱. Also, tell me some of your experiences, lets be there for one another! No one should ever feel like a burden, and it can be so painful when you feel this way. Lets stick together and have eachothers back through the tough life of these invisible illnesses that we have! #chronicillnessblogger #spoonielife #chronicillness #michiganblogger #spoonieproblems #spoonie #chronicpain #chronicillnessawareness #chronicillnesssucks #chronicillnessfighter #spooniewarrior #chronicillnesslife #spoonies #chronicfatigue #chronicallyill #potssyndrome #autoimmunedisease #dysautonomiaawareness #atrialseptaldefect #endometriosis #posturalorthostatictachycardiasyndrome #invisibleillness #butyoudontlooksick #ehlersdanlossyndrome #pain #autoimmune #gastroparesis #spoonieprobs #alone #chronicallyill
Forgiveness. Why do we find it so hard to forgive ourselves and but when it comes to forgiving others it's easy? Do we feel like we are unworthy of self love and compassion?
We strive for perfection and give ourselves a hard time when we do not perform at 100%
But the reality is that we are just human and naturally flawed.
We need to make peace with that and treat ourselves with more kindness and respect. We deserve forgiveness, we deserve to feel like we can give things another go and we deserve to feel that it is ok if we don't get it right the first time. So try to be more forgiving to yourself, because in the end we are all learning as we go.
A year ago I returned back to college after a full year on medical leave. Before the first day back, I felt crippling academic, social, and situational anxiety - Due to brain fog and POTS, I was no longer capable of processing information as I had previously; I knew I would have to undertake the daunting task of developing new studying tools. I feared being lonely, as I had lost friends being absent from school and because so many others had graduated. Lastly, I worried about the safety of living on my own. I knew this would be a huge challenge, and as classes began it was even more difficult than I had imagined. I felt profound sadness as I walked through the halls and pictured myself hanging posters for the different clubs I was apart of, and sadly knew I would not have the energy to re-join. I’d have flashbacks of giving tours to prospective students, one of my favorite extracurricular activities. I was stuck clinging onto memories of the past. Wishing I could re-create them. I couldn’t escape the expectations of my former self. It was all too much. It felt impossible. But as time progressed and Shayna and I settled into our apartment, things started to change. I’d wake up in the morning to Shayna jumping in bed with me, kissing my face, letting me know that it was time to go outside. It was if she was saying “there’s no time to be sad, the world is awesome!” and for the first time some of the anxiety dissipated. I’d walk with her each morning and I started meeting people, some from my apartment, other dog lovers, and students from campus. Shayna became a tool for me to socialize and exercise. When I felt overwhelmed in class, my mind would momentarily drift and I’d plan my day with her in my head. It made me feel in control, comfortable, and safe knowing I had her waiting for me at home.. She made me feel in control, comfortable, and safe. Her unconditional love gave me the strength to take these tough challenges head on, and this is why I owe so much of my success, my health, and my ability to graduate summa cum laude, to this girl. To everyone else she’s just another dog on Instagram, but to me she’s a lifeline 💕🐾
Confession: I was stupid......S-T-U-P-I-D🤦♀️ I did yesterday exactly what I tell everyone NOT to do.....I ditched my consistancy, threw it out the window and didn't take my 3 steps yesterday morning😳😨😩😵😭 And what happened? I survived....but I dang sure wasn't thriving!!! My excuses: •I got busy this morning
•hadn't opened the delivery box yet so I don't have time
•one day won't hurt
•I don't feel good because of my health challenges going freaking bazurk so it might not really help anyway
•I need to spend time on my homework before I run to work.... Let me clear my flipping throat..."OH HECK TO THE NO! NEVER AGAIN! BOY WAS I WRONG!" so today ON TOP of what I'm dealing with medically, my brain fog was off the chain stupid, headaches, no energy whatsoever (chronic extreme fatigue is a battle when my conditions flare) but yesterday was "idk if I feel up to lifting my water bottle" kind of exhausted, NO studying or homework got accomplished (due tonight😳😩), didn't make super, didn't do ANY cleaning, stomach hurt after eating anything all day AND I felt cranky, uneasy, low mood and overwhelmed all day....just to name a few cuz I think we get the point.... Dude I took the elevator 4 times because halfway up the stairs I'm talking to the stairs like, "yep, nope. not today satan."😂🤣 I really and honestly didn't realize how much my 3 little steps first thing in the morning is helping me live through this bout of medical issues instead of just existing....and yesterday was a good reminder of how I felt daily before thrive.
But I'm good with not having that reminder again for a REALLY LONG TIME..like NEVER😂🤣😂💖 #thrivingnotsurviving #todayisanewday #upat5am #doinghomework #ANDMYTHRIVE #chronicillnessfighter #thrivegivesmehope #premiumnutrition #fuelyourbodyproperly #properbodyfunctionsupport #missedmyshake #havingadoubletoday
Grateful to be able to walk to the pier today and sit under the warm sun.
After such a shitty few weeks my body feels so much better today!
Sometimes we have good days, great weeks and even awesome months. And sometimes it's the complete opposite.
Learning to let go of situations you cannot change is so powerful, more than you think. Because holding onto a situation or a feeling that we have no control over gives us validation to feel or act the way we do.
Instead once you let go of it, you actually let go of all the pain and frustrations or disappointments and allow yourself to be free from them, free from ego. This takes a lot of strength because we are used to holding onto things that make us unhappy, which in turn is actually the ego telling us that our pain and suffering is worth our time and energy, when it shouldn't be.
We should give our time and energy to things that makes us smile, laugh and or simply just 'be'. So take a deep breathe in and when breathing out, let go of all that suffering that is not serving you.✌❤
As my littlest love approaches her 2nd birthday, I am overcome with joy, beaming with pride, and couldn’t be more in love with this little blessing. Most pictures are blurry because she’s always on the move. She has mastered The Vest for her airway clearance sessions, even pressing the buttons to turn the machine on. Currently she takes approximately 35 pills a day and started swallowing them whole. Last month she fought off a cold on her own and we are another year down hospital admission free. Praises to God! She knows what she likes and is not afraid to show it. She is feisty, determined, fearless, and is always testing the boundaries. Her smile lights up my world. She loves all things dogs, going to gymnastics, playing dress up, dancing, being stubborn, running, Nutella, guacamole, trust falls, going on nap strikes, shoes, and picking out her own outfits. She doesn’t say a whole bunch but she already knows her colors and shapes, amongst many other things! I love this smart, kind, strong, brave, independent little warrior and I am so lucky I get to be this beautiful little girl’s mom. Bristol Marie Price - you are truly exceptional!
#missseptember #littlemissseptember #almost2yearsold #cftoddler #sixtyfiveroses #cfneedsacure #curecysticfibrosis #65roses #cysticfibrosis #cysticfibrosistoddler #curecf #ddf508 #raredisease #rarediseasewarrior #chronicillnessfighter #cfwarrior #cfstrong #iloveyou #happybirthday
All this bling is giving me so much life!!! It would be such a struggle to wear jewellery, everything hurt so much that I couldn't stand it. Now I'm in a much better place than before and taking full advantage of it😁
September is #chronicpainawareness
month. In honor of that, and the hard time I've been having lately, this is a tiny bit of a vent post with an important message I hope will land with anyone who suffers similarly to myself.
Most people who know me know that I live with multiple #chronicillnesses
conditions that leave me extremely limited, even on my best. The truth of the matter is that I'm always in some level of pain because of my condition. The #pain
, the sickness, the #chronicfatigue
and /everyday/ joint dislocations force me to forego what little pride I have and rely on crutches and a wheelchair more and more all the time, assuming I can get up and out at all.
And you know what? There is NOTHING beautiful or inspiring about it.
It really fucking sucks to live in a body that fails you.
I have to work so much harder than everyone else around me. Too often the most mundane tasks are impossible for me to complete on my own. I watch the people around me /live/ while feeling like I've fallen off the wheel somewhere.
It's HARD as FUCK to love yourself in a body(or mind or, worse, both) that doesn't function the way it's supposed to; That doesn't feel like it loves you. It's hard. It's distressing. It's frustrating.
But it's the /little things./ You have to find those little dust specs of reasons to love yourself. You have to pile them together like a dragon hoarding treasure around yourself until it's enough to outweigh how much you hate your pain. Pretty eyes, decent talents, the people who love you, are the things that will keep you going. They are your happiness; The reason your life is worth living.
more than you hate your pain, even if the reasons why small. Your hoard of treasures will keep growing if you keep looking.
#ehlersdanlossyndrome #invisibleillnessawareness #ambulatorywheelchairusersexist #disabled #disability #notalldisabilitiesarevisible #eds #painawarenessmonth #chronicillnesswarrior #chronicillnessawareness #chronicillnessfighter #zebrastrong #ventpost #loveyourselfmorethanyouhateyourpain