chronicallyillandstrong

What are your go-to's when trying to distract yourself from pain/other issues at different times of the day? I try a variety of crafting, meditating, netflix (and zero chill lol) and making youtube videos to help others find some unwind time too.

The YouTube channel feels quite satisfying as I thought I would feel 'productive and useful' even when I am stuck in bed. It's not really had much success though. So that's why I am picking your brains now. I have meditations, nature sounds, relaxing music and bedtime stories but what am I missing from my channel?

www.youtube.com/channel/UCdfhza8xlwAW2djevF0gV4A

All suggestions and ideas very much appreciated. TIA.

#DistractMe #highlysensitivepersons #selfcare #PMDD #MentalHealth #PostTraumaticStressDisorder #Selflove #Disability #chronicallyillandstrong #Depression

I’m wondering how much of the hope doctors give their patients is just kindness out of pity or if there is truth in their kind words and we’re just too overwhelmed and afraid to believe it?

Last week I was hospitalized for a week, I thought I had pneumonia. I didn’t but they found Systolic Heart Failure (with no blockages or high cholesterol so we’re treating with meds and there’s high hope) and cancer. It was a horribly traumatic hospital stay, they nearly killed me from dehydration and it was like a parade of specialists and doctors trying to out “doom and gloom” or completely contradict each other and themselves. It really messed with my ptsd and induced numerous panic attacks while I was there.

Today I had my first official oncology appointment where I learned it’s stage 4 bile duct liver cancer that has spread to my abdominal area and lungs. I’m 39, most people with this cancer are over 65 and so survival is pretty grim. I also have asthma, type 2 diabetes, Sjögren’s syndrome, psoriatic arthritis and fibromyalgia along with the newly diagnosed heart failure. My oncologist (who is the colleague/boss of the horrible oncologist who made me cry and told me I was dying before any results were back. She was really upity and had an overall bad vibe. I made them notate in my chart that she was not to touch me or my case which is how I got her boss, who is no nonsense but super nice with such a good vibe).

Today I was told I’ll have a port surgically implanted within the next 2 weeks. My oncologist is super positive and kept assuring me that I’m not dying, that I’m young and new clinical trials are happening all the time. She seemed really confident that while yes it’s serious and yes I have a lot going on, I can still fight this. But I did see a sadness in her eyes when she had to tell me the diagnosis. It makes me wonder if the hope she’s giving me is realistic or if she’s just being kind? Positivity is important and I understand that but so is planning and preparing for the end because I effed up and googled and now I feel like what if she was just being kind? Or what if my anxiety is taking over and there really isn’t a reason to immediately think death is imminent?
#Cancer #LiverCancer #BileDuctCancer #Doctors #heartfailure #SystolicHeartFailure #Diabetes #Fibromyalgia #sjogrens #CPTSD #Depression #Anxiety #chronicallyillandstrong #Hope

Hey all. I have been diagnosed with cardiomyopathy and heart failure. I already had SVT and afib. We have been trying to get meds right, of course in addition to lifestyle. Has anyone taken Entresto? Thanks in advance for the help!
#heart failure #Cardiomyopathy #chronicallyillandstrong #chronicillnesswarrior #patientpatient #heartpatient

What are some things you have experienced since being diagnosed with gastroparesis? What has been the biggest surprise that you wish you knew??? Let me know! For me it has been how each day is literally different and how I cant regulate my electrolytes and iron. That has affected me a lot. What about you???

#Gastroparesis #chronicallyillandstrong #chronicillnesswarrior #autoimmunelife #ChronicPain

August is Gastroparesis Awareness month and I'm wondering what has surprised you in living day to day with this diagnosis. I know with me I have been adjusting to how I can eat a food one day and a few days later it can make sick. Or the constant nausea and dehydration. So let's hear your thoughts!!! #chronicallyillandstrong #chronicillnesswarrior #Gastroparesis

So lately I haven't had many green to yellow days as I would say. The days where I feel like I'm on top of the world and can do a lot. I am super blessed, like Lord jesus I am so blessed and highly favored I have been able to work during COVID, but my job has actually gotten more difficult and demanding. Also by working from home I tend to work more than when I'm in my office. But I digress.

My body has taken a beaten and with the transition through everything, including seasons, I just feel awful these days. Big picture my meds and treatments are working but I also know I could be better if I actually rested more. But it's hard because I am my sole caretaker and have no help. But I feel guilty some days that I need pain meds to get up some mornings because I tossed and turned all night thus aggravating my arthritis and muscular pain or that I have days I just can't move because I feel awful. Or I feel so sick to my stomach I can't leave my bathroom. I also feel guilty that I still have to miss events sometimes because my body and the outdoors just don't mix.

I also have been pushing myself extra because my dad had major surgery and had complications and almost died and my mom needed help and my siblings weren't stepping up so I have been driving 2 hours to my hometown and 2 hours back several times a week and well I'm feeling it.

I guess I'm just not granting myself grace for feeling bad or needing some respite. I thought this long weekend would be enough but I was wrong. I see I needed more but i feel guilty for needing it. Do any of you ever feel that way? I normally am great at self care and taking respite but lately I just have been struggling and struggling with the fact that I've been feeling like trash. Summer doesn't always bring joy and better days. Like everytime I step out of my house the heat and sun just make me feel worse. I blow up like a balloon and my joints are on FIRE! So I've been avoiding the outside like the plague. Le sigh, just needed to vent. And do it to people who may understand.

#chronicallyillandstrong #endowarrior #autoimmunelife #ChronicPain #ChronicMigraines #Lupus #Gastroparesis #CKD #Asthma

#Gastroparesis

So I'm overhauling my diet again because well most foods have been making https://me.sick except noodles, toast, applesauce, soups, eggs, bananas, my homemade waffles and muffins and a few choice things I make myself. But I find myself at a crossroads....I live chickpeas. And I can't decide if they should stay or go. So what is y'alls experience with chickpeas? How do you fair with them in your diet? I've been eating them sporadically and have been moving to a more plant based diet and feel that they are great for protein. I'm having trouble with digesting meats and fish is way easier on me. Just curious what y'all are eating. #Gastroparesis #chronicillnesswarrior #chronicallyillandstrong

I have been in some state of pain since March of 2014. It began as endometriosis and now I'm up to several chronic illnesses and autoimmune issues that cause pain. So today is a bad pain day and I sit here and try to weed through the 100+ emails in my inbox at work, my mind has ranked my pains in order from worse to manageable. So here we go:

1. CRPS from my fall down the stairs and I got 2 large hematomas in my thigh

1(a tie). Endometriosis pain

3. Kidney pain

4. Joint pain from lupus

5. Hemaplegic Migraines

6. Pluerisy

7. The pain in my leg with screws

Today, I'm easily suffering from several of these and legit wonder how I am still standing. Anyone who has chronic pain is a superhero....this is just FACTS!!

#Awareness #chronicallyillandstrong #endowarrior #autoimmunelife #ChronicPain #CRPS #Arthritis #chronicillnesswarrior #CKD #DDD