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Like attracts like

So I recently became friends with someone. Over time I’ve slowly got to know them, and last week found out they too suffer from chronic pain!

I have never met another YA that suffers from chronic pain but many older people, so I imagine the rate is fairly low. So I guess it’s as they say: like attracts like.

Life update:
Can’t remember if I said before, but I have a new job. It’s quite hard work, but thankfully my back has been okay.

To be honest, my back is okay most the time these days, but I don’t know if it’s just the case of being so used to the pain that I don’t notice low-level pain anymore.

Though I keep getting reminded how my life has changed because of chronic pain.

I’ve been thinking about going to the gym and doing exercises at home, but my brain reminds me I can’t do as much as everyone else can, because it sets off the pain and there’s only so much of it that I can take.

And when I was visiting my friend, I saw them run up the stairs and it hit me that I don’t/ can’t do that anymore. Quick movements set off the pain, and I get scared of tripping and injuring myself again (traumatic response). I never quite realised until that day.

Don’t take any of this the wrong way though, I’m not feeling sorry for myself at all. There is *so* much I can still do and the fact I can lead a relatively normal life is a blessing I never deserved but try to make the most of. And what caused the pain should have left me dead or at the very least paralysed, and it didn’t.

The pain I live with, the memories of being in resus and not being able to move much, the difficulties as a result of the injuries I suffered, they make me grateful and have taught me so much.

#ChronicPain #LivingWithChronicPain #Pain #Memories #Trauma #Reflection #Stronger #Blessed

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Why should I be quiet? #MarilynsFightForLife

Yesterday, in a family text feed, my sister posted an article that pointed out the air quality in urban areas and how it possibly led to the large amount of medical problems that people of color face.
So, I stated how it made sense, especially within the Sarcoidosis community as we fight to find the origin of the dis-ease since it was long stated that people of color were affected at a higher rate than other races. When I was young, there was a lot of tree spraying and that residue came down on us. My mother was diagnosed with this disease when I was young and she stayed in the hospital for a month while they tried to figure out what it was. I'm just trying to understand.  #MarilynsFightForLife #fighting4acure #LivingWithChronicPain   #sarcoidosisawarenessmonth
I was originally diagnosed with Pulmonary Sarcoidosis which resulted with me requiring 24 hour oxygen support to live. Now, I am considered one with Chronic Sarcoidosis since the disease is affecting several areas within my body. My niece, who is a general surgeon, posted a study about Sarcoidosis from 1991, that listed outdate information. I told her that appreciated her effort, but that she could find up to date information about the disease on the Foundation of Sarcoidosis website: as well as in the upcoming documentary via: She replied, "Here's a 2020 paper if that's more your speed. Same synopsis."
Truthfully, I don't know why it always come to this with my niece. I just added to the conversation about how I could agree with the information posted by "Her Mother" originally. I never intended to make it a "Me" conversation. She responded to me that nobody doubts my struggles or pain and that she feels for me, but why do I make every conversation pivot to my experience? Huh? What? I just don't get it. Within this family dynamic I just should stay quiet. Why? This is where I need your help to understand if I, indeed, did steer this conversation towards me? I am an advocate for Sarcoidosis yes, but in this conversation I just agreed with my sister and questioned if this would help with determining the origin of Sarcoidosis within me. Was I wrong to say anything?

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Today is a very hard day for me. With nothing to ease my debilitating pain, I'm stuck in my chair, even afraid to move to go to the bathroom. This is no way to live, but I fight on. #marilynsfight4life #fighting4acure #sarcoidosisawarenessmonth #LivingWithAChronicDisease #LivingWithChronicPain #LivingWithAnInvisibleIllness #RareDisease #Fibromyalgia #Osteoarthritis

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Dealing with #chronicpain #MarilynsFight4Life #fighting4acure #sarcoidosisawareness

I am tired of dealing with doctors that just don't get me. My Cardiologist and Rheumatologist did not refill my meds. The want me to come into the office and not via TeleMed. I truly love my doctors, but not having meds to keep me alive and not in excruciating nerve pain is sad. After experiencing stabbing pains in my head everyday that lasts 35-40 minutes straight, and itching like I have chicken pox or something. All this kept me awake and also with the excruciating bones and joint pain; I cried all the time and felt alone. Finally, my PCP and my Neurologist had enough and wrote the prescription's that I needed. On top of having #ChronicSarcoidosis #Fibromyalgia and #RheumatoidArthritis and relying on 5 liters of oxygen 24/7; I can't afford to not have people in my corner that really understand my fight. I know we all have experienced something like this at one time or another right? #sarcoidosisawareness #LivingWithAChronicDiseases #MarilynsFight4Life #fighting4acure #Fibromyalgia #RheumatoidArthritis #LivingWithChronicPain

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Poem - Chronic Illness

Chronic illness

It gets you from the inside
Making life seem inexplicably hard
It gets in your bones and pushes
It leaves you feeling bruised and scarred
There’s no cure they said
Not for the constant pain
No cure for when you can’t get out of bed
The days you have to call in sick
leave you feeling bereft

Pain leaves it’s mark on your mood
Like an ink blot on paper
Making you both irritable
Followed by subdued

It takes away your confidence
But it gives you something else
A strength from deep inside
You had no idea you possessed #MightyPoets #ChronicIllness #MentalHealth #Fibromyalgia #Pain #ChronicPain #Spoonie #LivingWithChronicPain


But like, why tho?

#Anxiety straight up sucks. I messed up but not taking the summer off from college classes so I started the fall semester already exhausted. I can’t wait until May. My #EhlersDanlosSyndrome has been causing lots of pain and other problems too. Since the start of the semester I’ve had 2 X-Rays, 1 MRI, and an Esophageal Motility Study... plus my headaches are getting worse so I just got up on a new med for that. Today in class I almost started sobbing and I honestly don’t know why. I’m just so stressed 24/7. I started #Therapy for the “first” time (as in, the first time I’m actually trying). I hate going. My #Therapist is good, it’s not him I hate. I just hate talking about myself. I hate being open and vulnerable. We’ve had four sessions so far and our third was basically allllllll about my #Selfharm history and, what NO ONE in my close circle knows, my current #selfharmthoughts. I’m 2.5 years clean so those who even know I did it, all think it’s all completely in the past because that where I’ve told them it is. But now my therapist knows it isn’t. And I’m not okay with that. I’m honestly just so tired of being so tired #DepressionAndMentalHealth #MentalHealth #LivingWithPOTS #LivingWithChronicPain #MastCellActivationDisorder #ChronicIllness #CheckInWithMe

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Chronic Flare up #livingwithachronicillness #fibroflare

I just wanted to share with you guys about the severe neuropathy flare that I’ve been experiencing for the last 2 1/2 months. So severe that I have seen three doctors just to get some answers and some relief for my whole body swelling to the point it seeped fluid.
My legs and feet were so hard that they didn’t even pit. My husband and I didn’t think it was fluid at first. It literally felt like I had fifty pound weights attached to each leg. I have to be assisted with everything including washing and eating. This pain is extreme. My hands were the worst. They literally have no feeling in them. Typing this is very painful but I had to share my experience. My hands felt like they have frostbite and they are on fire at the same time. Rubbing them didn’t help. The only relief was to submerge them into scalding hot water. This kept me up all night. Each joint was so painful that I couldn’t even hold a fork or cup. The main problem was trying to get the doctors to understand what I was explaining to them.
So the final diagnosis was both a rheumatoid arthritis and neuropathy flare at the same time. The treatment was to put me back on 10 mg of Prednisone again. I had been weaned off of Prednisone 5 weeks before after have taken it for 20 years for my Chronic Sarcoidosis. I was also prescribed Baclofen, which is a muscle relaxer for the severe spasms that started with the flare.
The swelling has receded some and my mobility is very strained because of the trauma to my body. The doctors have all stated that is all they can do because my body is too sick. This all to say, please keep me in your prayers. #MarilynsFightForLife #fibroflare #LivingWithChronicPain

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