Had a horrendously awful flare day yesterday, 1.5 hours sleep the prior night. No food posts as I haven't been able to stomach much with feeling nauseous and what I have been able to eat has been syns. I'd hazard a guess at a total of 20 syns for the day and managed my HexB. Trip to the doctors and a switch around of meds and fingers crossed a better day ahead tomorrow and I really need to up my game in pacing myself to get more of a handle on these flare up fibro days.
#invisibleillness #chronicpain #fibromyalgia #spoonie #chronicillness #anxiety #depression #mentalhealth #slimmingworlduk #sw #syns
Describe something about your PAIN JOURNEY that turned out to be an UNEXPECTED BLESSING in disguise. How did it change your perspective on pain?
My PAIN JOURNEY has definitely allowed me to feel the SUPPORT of not just immediate family/friends (although I’m blessed daily with my support system), but it’s the kiddos (former & current students) that SUPPORT me by wearing awarensss colors. Talking about it. Asking if I need help. They TRULY care and show it in the smallest but most meaningful ways.
I’m also told (quite frequently) that I INSPIRE others. I’ve always been inspired but not the opposite. When I think of inspiration, I think about the action or power of moving the intellect or emotions; a force of influence to do something or feel a certain way! The absolutely most BREATHTAKING painting of the orange man in the moon below was given to me by a student. She painted this for me and told me that I inspired her. Honestly, this made me cry. It also was a selfless act that means more to me than this young woman will ever know. However, being inspirational come a lot of responsibility that I hope 🤞🏼 I fulfill. I’m truly humbled when I’m told I’m an inspiration, I’m just, Heather! #ThankfulThursday
& #PainWarriorsUnite #active #awareness #body #burn4cure #crps #cure #chronicpain #support #fire #fight #fightlikeagirl #health #instagood #instahealth #spoonie #pain #photooftheday #rsd #therapy #flare #fitspo #picoftheday #invisibleillness #raredisease #crps #flare #peopleinpainmatter
For as long as I can remember, I’ve always wanted a nickname; something unique to distinguish myself amongst the masses. Unfortunately, though some have tried, there’s not much you can do with Heidi (haha), and nothing significant has quite stuck—nothing that is, except for one name.
In high school, every time I would come back from weeks of absence from my then mysterious illness, there was a particular boy who took immense pleasure in my pain. Without fail, as soon as he saw me again in the crowded halls, trying not to draw any attention to myself, he would yell as loud as possible, “Disease!” Then, he would dramatically cover his mouth; simulating wearing a mask as if to not be “exposed”. While he openly laughed/mocked me with his buddies, everyone else stared at me with skeptic and even frightened eyes. You know the lepers who were ostracized in the Bible? Yeah, I definitely can relate.
I’ve always wanted a nickname (everyone in my family has one, but me), but I NEVER wanted to be known as the “Disease Girl”, which from this repeated experience is exactly what I became. Even now, for many who meet me, as soon as they find out about my rare disease, it’s all they can/will ever see; the repellant, shunned scarlet letter emblazoned on my chest, and not by my choice.
Despite this, I continue to share my story openly in the hopes of educating others on how trivial, immature and hurtful labels can be. I recognize in our society, we are conditioned to automatically assign a title to someone in order to differentiate. But, I believe this human impulse is entirely premature and superficial, and disregarding/judging/rejecting someone simply because of their differences, only cheats yourself from vital compassion and personal growth.
So, if being known as the “Disease Girl” is a cross I must bear now to prevent someone else’s path from becoming my own; to end the stigma associated with chronic illness as I continually live my full life with purpose, joy and adventure, then it’s an alias of mine I not only accept, but I FULLY EMBRACE. Maybe someday, another nickname will suffice, but for now, “Disease Girl” suits me just fine.
I was fine when I woke up this morning.
As time went on today, I felt the evil that is fibromyalgia creeping up on me.
It started in my feet, the swelling made it hard to walk. Pain slowly crept up my legs, making them ache terribly.
Oh the dizzy dizziness making the down seem up and the up seem down. Feeling like I'll fall flat at any given moment.
The heatwave causing me to not feel the cool air blowing all around me. The heat radiating from my body would make anyone believe I was just simply running a fever.
Cue the anxiety and the extreme need for the sleep that won't come because I'm in too much pain.
I was fine when I woke up this morning.
Sometimes you can do all the workouts and walk 15,000 steps a day. Eat all the green stuff, vegetables, protein and good fats. Drink the bone broth and lemon water. Do your injections, take your tablets and its all not enough. Sometimes I feel betrayed by my body, what more does it want from me? 😥 currently getting my first round of steroids for optic neuritis 👀 two more over the weekend and hopefully it will return my eye sight back to normal. 🔴🔴🔴
#ms #multiplesclerosis #thisisms #overcomingms #msawareness #multiplesclerosisawareness
It's been one of those weeks that just has me broken down. Back and forth phone calls with different docs trying to figure out what this new problem is. My ultrasounds got pushed back so I have to wait again.
I'm at a point now where I was told if this pain doesnt lessen I need to go to hospital, but I cant stand that. I hate the fact that when I'm in there they treat me like it's all in my head or they focus on one symptom instead of all the things that go together.
Focusing on my nausea and telling me to have soup doesnt help that insufferable abdominal pain, the blacking out, or the changes in heartrate and blood pressure. I feel worse being there than I do being in pain at home.
Sometimes you just gotta sit back and enjoy the ride 😎
“There is no greater agony than bearing an untold story inside you”
This is going to be a very long, very overdue post regarding medical trauma & my personal story. It was not until last year that I finally started opening up about my life living with chronic illness. I spent my Sophomore year in complete denial, hiding what was going on in my life. Three years ago, I got the HPV vaccination. I was born with dysautonomia passed down to me, but I had not yet been diagnosed. After I got the vaccine, my body shut down. Within a week, I was falling, I was extremely fatigued, I was sick. My body felt like it was breaking apart. I could hardly get out of bed, but I did. I did it to keep up the image that I was still okay. To this day I believe that vaccine is the reason my health took such a turn. I believe this because I have spoken to so many others who live with POTS and other dysautonomia-related conditions who had the same reaction to the vaccine. Over three years later is today, where I got two more vaccines. Neither of them had anything to do with HPV, and to my knowledge, HPV is the only vaccine I can’t have. However, I am an emotional wreck. I am a wreck because I am still traumatized from the pain I faced and the ignorance of my doctors. My body feels drained, my head is pounding and I can’t stop crying. This has happened with every vaccine I’ve gotten lately, and I didn’t understand why. It’s trauma and it’s valid trauma. I saw my body completely change, I saw my mental health spiral, I saw my personality change. Being sick has changed so much about me. Despite knowing and believing vaccines won’t hurt me, I can’t help but imagine myself dead in a week because had I gotten the second HPV vaccine, I would have been dead within weeks or even days. Please do not mistake my words, I am 110% pro-vaccine. I believe vaccines are essential for *most* everyone, and I will always believe they are better for us than worse. However, what I want to advocate against is malpractice in doctors, specifically doctors dealing with at-risk, immunodeficiency, chronically ill patients. That is only the start of my story. I will never stop sharing & spreading awareness. 💛
Three beautiful young souls gone too soon due to this incurable illness 😞 this is very upsetting and has put me in a gloomy state of mind lately. There is so much stigma surrounding diabetes.. The biggest one being that we ate too much sugar and caused this to ourselves. Can you believe President Trumps’ budget director stated that we (diabetics) do not deserve healthcare because we just sat around on our butts, ate poorly & got diabetes. It’s truly baffling to know that there are so many people who choose to be ignorant when it comes to our illness. Diabetes is a serious condition & in the blink of an eye things can take a turn for the worst. We don’t take our life for granted, everyday that we wake up is a blessing. If more people decided to stop making assumptions about diabetics & actually support us, maybe then we could make a positive impact in our world. Maybe then the US will propose a more humane approach to their healthcare laws. Maybe then insulin prices will stop rising & will actually become affordable. Maybe then we could have doctors screen for Type 1 Diabetes early on or alarm the community about the symptoms. Maybe then the supplies we need to help us live a safe & long life won’t be so overpriced. Maybe then we won’t have a citizen choosing between eating or their medicines. Maybe then we won’t have a diabetic rationing their medication in order for it to last longer. Maybe just maybe-then we could save multiple lives. RIP to my beautiful angels & all the other type 1 warriors gone too soon. I really hope we can see some positive changes in the world soon 💙
You know, I was thinking about my triggers, and how I try to create safe spaces on my page to protect followers and friends from reading things that bring guilt, horrible memories and destructive thoughts. Sometimes, I miss the mark. Many times, I try to correct or educate and not everyone will see the harm in what they feel are supportive and encouraging words. All I can do is apologize. Those of you in my inboxes and DMs, I feel terrible that you feel unprotected, lonely, dismissed, and misunderstood. Your feelings matter. Things may look grim right now, and I may not know exactly how you feel, but I've had my own as recently as today, and we don't always get the response we need. I'm here to listen. I won't advise or criticize. I might ask a few questions and I may not be the best at calling every day, but you calling me won't be a burden. What can I do to help you? How can I show you that you have an ally? What can help you feel less alone?
Makeup by @oyayothestorm
Jewelry by @earthboundtrading
#Anxiety #Depression #PTSD #Bipolar #InvisibleIllness #SuicideAwareness #ReprogramYourThoughts #FindTheLight #LightAndLove #WishCraft #BlackGirlMagic #Enlightenment #Elevation #Evolution #KillEm #IEnvy #BeatFace #KissCosmetics #NYXCosmetics #Fash #Morphe #HipDot #BHCosmetics #StudioPro #Bloom #Lotus #InkedUnicorns #Moonstoner #StopStigma #Ally
I’ve been MIA recently, as I’ve had bad news about my Crohn’s and I just don’t really know how to handle it. My inflammation levels have gone up again, 300+, god knows why. I looked like I was on my way to remission in April and then it just went back downhill. So they’ve started me back on the dreaded prednisone, which as many of you will know makes you feel like utter shit and like I could eat a house. In constant pain, tired constantly, and just feeling like shit. So I have to go get a colonoscopy at the end of the steroid treatment to see what’s going on and I’m so scared. My last one was fine but I just hate it and really wish at times like this that I could just be normal and disease free. I’m sorry for the negativity but sometimes you just have to be fucking negative because life can suck, and it’s okay to not be okay with it. I’ll be happy and accepting another day, today I’m gonna mourn for my body. Also I have the flu which fucking sucks. Hope you’re all feeling good 💖🐝
Trying is all we got left sometimes. Licking my wounds today after shitting myself in dramatic fashion yesterday. Sometimes you just want to pause life to rest but alas the world keeps on turnin’. Keep up the good fight CIC crew. #crohnsiscray #try #crohns #colitis
People of #ADELAIDE
block out our calendars!
is fast approaching and we are inviting you to our World Mental Health Day Business Breakfast at @robroyhotel
on October 10.
The event will feature keynote speaker and @_iamworthmore_
- an inspirational speaker who has battled addiction & mental illness to the point of contemplating ending his own life- his story is open, honest and raw, and something that everyone will relate to.
Hosted by @gregmoulton
this event is to inspire & help remove the stigma associated with mental health, mental illness and addiction while enjoying a tasty individual cooked breakfast.
There will also be a Q&A featuring @kerrieandspence
from channel 9s @theblock
Limited tickets are available so get your team together and get your tickets today.
Head to @_iamworthmore_
I saw my GI doctor this morning and he ordered an endoscopy for tomorrow morning as well as a bowel prep today. He also did a gastric protocol (I think that’s what they called it); it consisted of something to coat my stomach as well as an oral lidocaine liquid (along with a few other things) so it’s supposed to numb my stomach. It didn’t really help much, so I’m not sure if it helps them get closer to what’s going on.
It turns out I was pretty backed up which is concerning because it means that other parts of my GI tract also have slow motility, which is not good since I just had a total colectomy.
I was feeling okay in terms of pain because I hadn’t eaten anything today—other than a sugar free lemon slushy thing—but then I had applesauce and it caused horrible pain. So they decided it’s back to clear liquids. 😏 It’s still a mystery at this point, but they’ve done a pretty decent job of managing my pain, which I’m grateful for. Also, shout out to my body for deciding abdominal pain wasn’t enough and throwing a migraine into the mix. 🧐
So update on this hospital stay. I’ve been having GI issues for a while now, but recently I haven’t been able to keep any down. Because of that my doctor had me go to the hospital. When I came in I was in acidosis with my kidneys close to shutting down. I also was in complete electrolyte imbalance and starting malnutrition. Since I’ve been here the Nephrology team has gotten my ph back in range. I have had an endoscopy, which they just did to rule things out and was fine. They have been replacing everything through IV and I’ve been having my heart monitored. But I still haven’t been able to tolerate orally and not allowed to get up with out them with me. The floor doctor doesn’t have a plan and doesn’t understand my other conditions going on. GI finally came around again today after waiting days for him and he has hopes for this new medication. He also want a certain test done but as outpatient. As of right now I feel like I have no control but I hope GI is right with the med. I’m also just hoping for something to change so that I can get discharged.
Homegirl had a follow-up with her neurosurgeon today. Nothing exciting happened, which is good! We are going to try some different things with her collar and see how physical therapy goes. The PT place seems a little freaked out by her, which is mildly entertaining. 😂 (I feel like in order to deal with something of this magnitude, you have to have a sense of humor about it to survive) Such a big diagnosis for such a little girl, I suppose. That’s all for now. Also, she’s super duper adorable.
Nature nourishes me. Being in the wilderness, from a young age, put me at ease, rejuvenated and inspired me. For years, I was reluctant to venture there, though, as it was simply too uncomfortable. It was then that I began painting, as a means to stay connected to nature.
As I have begun healing now, I have been able to return to this fountain again, free of the fear which kept me from it for so long.
CLC MEMBER FEATURE:
My name is Andreia and I’m a Portuguese young woman living in the UK. I am happy to be sharing my story that can somehow help people in the same situation.
Mixed connective tissue disease (MCTD), a rare autoimmune disorder that features signs and symptoms of three different disorders: Lupus, Scleroderma and Polymyositis. Associated with the disease I developed Raynaud's Phenomenon and Anxious Syndrome.
I discovered the first signs of Raynaud's Phenomenon in 2013, they were visible on the hands and feet especially on colder days and when I went through stressful situations. I went to the GP and the doctor said that her hands were colder than mine. They didn’t ask for the necessary blood tests, so the situation was getting worse.
My life changed in 2014 when I was diagnosed with MCTD, already at an advanced stage. After two months of hospitalization and some misdiagnosis, there was no improvement and losing my motor skills and weight. I couldn’t eat or shower without help. Dr. Alexandre Sepriano saved my life when he decided to take me from Infectiology (they assumed I had meningitis) to Rheumatology. The next morning, I was able to walk. Four years have passed, and the disease has been mostly inactive, except in 2017 when I’ve made a bad choice in my life.
Despite having a life dependent on medicines and having limitations in my daily life, I never gave up on my goals. I always worked and studied at the same time and nothing makes me prouder than having a Law degree from the most reputed School of Law in Portugal. My goal is to do a specialization in Human Rights in the UK. And to be able to have children in a healthy and peaceful way.
I always feel that I fight against my slow and disobedient body. It just doesn’t follow my mind. Anything that demands physical effort has become a challenge for me, but nothing is impossible. Yes, I am incurable and for me, every day is a new beginning.
This is an accurate visual representation of what my day was like... pantsless, confused, in pain, and trying to figure out how to use the phone through my fibro fog. I give myself a gold ⭐ for showering. I deserve more than I give myself ⭐⭐⭐⭐⭐ I haven't taken anything outside of my standard meds today but boy am i out of it. Even through the haze, I stayed the course and didn't let the darkness destroy me. I am so optimistic that once I'm past this, my treatment will start to work 🤣😋😁 ⭐⭐⭐⭐⭐ Keep believing in your own strength and keep hope alive, even if it shrinks so small you lose sight of it, it's there. Be well, ya'll #depression #shineagain #anxiety #chronicillness #invisibleillness #chronicpain #migraines #fibromyalgia #fibrofog
So today I wanted to chat a bit about non-topical skincare. This is not as satisfying as a decadent serum or cream, but it's still important. Pictured here you see some of the things I do everyday (read most days if I'm being realistic) to take care of my skin from the inside out. All of these things have the added bonus of being good for all of you, not just your skin.
From the top :
My big-ass Nalgene. Drink water, a lot of water. Your skin is the last part of you to get water, which means if you become dehydrated your skin will be the last thing to recover. Water also flushes the waste through your filters, keeping them in good shape means means less nastiness is expressed through your pores. Is staying hydrated going to fix all your skin problems? No, definitely not, but it can help you keep things from getting worse.
Vitamin C, I'm sure I'm not the only one here who applies it topically, but it's also really important to get enough in you as well. The juice from 1/2 a lemon meets your daily intake requirement. I prefer a hot cup of lemon and water to taking daily supplements, it's more bioavailable and I know exactly what I'm getting - remember supplements aren't regulated in the states. I've actually noticed an improvement in my skin since I started doing this, the tone is more even and just a bit brighter and I'm not getting as many breakouts as I was.
Probiotics, or in this case yogurt. Good probiotics are pretty spendy, I can get a months worth of delicious greek yogurt for less than 1/3 the cost, and again I feel like it's more bioavailable anyway. Everyday I eat a cup of yogurt for breakfast, it's awesome. I don't usually eat in the morning so this has been an interesting transition but it is really nice, plus I have a bit more energy going forward in my day.
Exercise guys. Look I'm not crazy fit or active or toned but I do try to work in a little exercise at least 4 days a week. For me that's yoga, weight-lifting (these guys are 3 lbs. each, my grandmother could do that) and walking most days. This is going to boost your circulation, your metabolism, your mood and if your anything like me, your self-worth. *continued in comments*
Bad pain day today - could not get to sleep last night due to a fibro flare up making me feel so uncomfortable and now having some Ehlers-Danlos joint pain joining the mix😭 Luckily I can do some uni online and my puppy is snuggling up to keep me company - she definitely keeps me sane🐶❤️ Really just one of those days where I’m sick and tired of this never ending pain and the unpredictability of my own body😔 So drained, so tired of living in pain.
Earlier this month I had to go to the hospital for a scheduled appointment. They have a small side entrance and if there’s anything I like avoiding, it’s hospital lobby’s, so I opted for the small side doors. As I was going in, I saw a man sitting with his legs outstretched and a worn look on his face. I noticed that his badge was clipped to his pocket. We made eye contact but it was like he didn’t really see me..the man was too out of spirits to notice that he was looking at anyone. I went inside and eventually saw the man enter and go towards the back area for doctors and staff. •
I’ve been writing about physician suicide for the past week to bring awareness to an issue that is often silenced.
I don’t know what happened for that man to look so dejected that day, but I do know that we as Spoonies can be a bit too critical of doctors. Maybe instead of focusing so much of our anger on actual doctors, we should aim it at the policies that overwork physicians to their breaking point? I think most doctors go into medicine because of their compassion and desire to help others. If so many people feel ignored by their doctors, then maybe we need to look deeper and understand why this is happening. I think we’ll find the answer in the system and not in the doctor (can share more on this but won’t be for awhile..).
Maybe more compassion is needed on both sides of the exam table ❤️
Thank you to all doctors who keep going back even when it knocks you down. May you be given strength and patience to continue pushing through ❤️