chronic illess

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Community Voices

Blogging as therapy

Recently I have started to blog as a way for me to work through things and to maybe help others feel they are not alone in the struggles of chronic health conditions and chronic pain. While I don’t get traffic really, it does help somewhat to put my thoughts down and out there.
If you are interested, it’s, between the blog, being creative with crafting and reading- I feel I’m starting to have some kind of outlet.
While these methods don’t work everyday, at least it does help some days.
What do you do for an outlet?
#ChronicIlless #RareDisease #ChronicPain #Anxiety #ChronicDepression #Mito #Outlet #Blog #crafts #Reading

1 person is talking about this
Community Voices

Chronic Pain in Relationships

I have chronic pain in most of my body, due to a lucky combination of genetics. I also have chronic migraines. I don’t often mention my pain to my partner (unless it’s a really bad day), because he doesn’t seem to take it seriously. Then when he had a simple headache from not drinking water, he acts like I need to baby him. It’s so frustrating when I go all day on my feet, to the point where my feet are practically numb, then come home to him curled up in bed because of a headache. I don’t know if I should bring this up to him or if I should just accept that our pain levels will always be different. His severe is my baseline. I’m just so tired all the time… #ChronicPain #ChronicIlless #ChronicMigraines #Relationships

Community Voices


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Community Voices

Tucha resting🐈‍⬛

<p>Tucha resting🐈‍⬛</p>
28 people are talking about this
Community Voices

Tips and talk

Hi my name is Kayla donahue i am 18 years old . Cleveland clinic is where i go for my doctors … anyways So I recently just got a port put in my chest and I haven’t used it yet I’m aloud to just haven’t had time . Does anyone know if I will be able to smash my meds up and put it through my port? Bc I also have g-tube so when I push stuff through it like medicine it clogs the tube . And the reason I asked u that is bc my doctor said he don’t know if some of my pill ate actually getting resolved . That and when they access my port will I have to keep the extensions on there at all times even if I’m not using them ? Also if u have anywheel chair tips for advice on anything fill free to message and comment .. #ChronicIlless #GI #Auto immune

Community Voices

So much stuff!!!

I have been having a really hard time and it’s been a reallly long year for my family.
About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

When I was younger my brother more than once sexually assaulted me.
I don’t know if it actually considered that
I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

So the situation is idkw but after he had his stroke I just couldn’t speak to him.
I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
He has been trying to get in contact with me but I have thwarted contact.

My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

#SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

8 people are talking about this
Community Voices
Community Voices

I’m Sorry I’m Blue

Lungs are crushed under the weight of water Born by
All you were created to be
And all that you’ve become instead
Genetics-done or mother’s neglect
And what you’ve chosen
For us
Despite all the love you claim
I can’t accept
That I should drown
So you can breathe
Because if that is love
What’s left for me
And lest I gasp for air and pull your arm
Desperately signaling
This darkness floods
My face
Is wet with so much regret
Decisions made from disillusionment
And deformed bones are just the base for the core malignancies I’ve adorned since

Face goes crimson
Deprived of what I need
But you take another drag
And further shrink my human needs
With what you think my needs should be
Which is you
Then ask me not to look so blue
Bc it makes it harder for you to breathe
I guess that’s what i get for jumping ship
Into the sharks
I must be blind
How do I keep mistaking trauma bonds for life
And stable foundations
I once loved the sea
And now I fear it
Much like you
Much like you

Community Voices

Nearly magical ✨️

<p>Nearly magical ✨️</p>
3 people are talking about this
Community Voices

My heart is heavy and hurting. #Anxiety #Depression #PTSD #ChronicIlless #ChronicPain

I want to preface this by stating that this is not a post about wanting people to feel sad. This is not a post to get attention or simply make events all about me. This post is meant to shed light about realities and deeper actions/conversations that must occur as they are long overdue.

-I am a teacher who is 12 years into her career. I know this week was the final week of school for many and find myself missing the days as a kid where my school's biggest concerns about contraband brought into the school was silly string, preventing reinactments of scenes in TV shows or movies where kids throw their papers into the air as they walk out of their classes to begin summer vacation, or a kid sneaking their pet in to show off at show and tell.
-I am a teacher who was in 6th grade when Columbine happened and watched the news coverage in class all the while being scared because our student teacher had been back in her hometown of Littleton interviewing for teaching positions. That same year, I experienced an interaction in which I felt torn about whether to say yes when another student who I didn't know asked if I was Jewish and believed in G-d because I remembered hearing that one of the first people killed had been asked about her belief in G-d prior to being shot.
-I am a teacher who was told not to come to school when I was in 7th grade by one of my teachers since threats against the school were made the day prior to Columbine's 1 year traumaversary.
-I am a teacher who was in 9th grade when in the same year we experienced the trauma of 9/11 in which we lost a beloved teacher that day and a school wide evacuation due to threats on the last day of school shortly after I had turned in my final exam. Once evacuated, my Nokia cell phone that was just supposed to be used for emergencies got used for one of the first times I had gotten it. That was before we had protocols about not using cell phones in times like these out of concern for what might result.
-I am a teacher who was a sophomore in college who was getting out of class when I found out Virginia Tech was experiencing a mass shooting. A girl who lived in the same dorm that I did lost a dear friend that day.
-I am a teacher who has subbed and/or taught in "the poor school", "the rich school", and many other fill in the blank dubbed schools. In my 12 years, I have watched yearly videos about how to do lockdowns and active shooter protocols. I have caught the aftermath of pepper spray after our school cop acted quickly when an unknown person entered a school and I happened to be out in the hall with a student. I just barely pushed the student back into the room as I quickly tried to lock the classroom door all while relying on my countless trainings telling me to remain calm and heard a door being opened from the outside. I have been the receiver of news from multiple students about them learning of a peer having a weapon and seeing the fear in their eyes. I have cried as I have listened to my students tell me of friends, family members, and other members of their communities being murdered by simply going about their everyday lives. I have been told by students that I need to avoid certain areas around the school because there was high potential for violence to occur around the same time I would be heading home for the day. I have been at the very festival that changed Vegas forever in its prior years. I just so happened to not attend but had colleagues, students, and community members there who witnessed things that have traumatized them forever. I was unsure of what to say to them as they shared their stories and fears in the days after. I have had to give speeches about how we act in lockdown situations more times than I want to know. I have been in more lockdowns than I can count and have felt a gamut of emotions as I have had what I hope to be safe people jiggling the door handle to check to be sure it was locked. I have been concerned about needing to report missing students during these lockdowns who went to the bathroom or had gotten called out of class moments prior and silently hoped that they had been able to get to a safe space as soon as the lockdown was started. In unknown lockdown situations, I have had to consider whether or not I would be the last to see the students in my classroom that day, if I would be able to protect them sufficiently, and/or what I would be experiencing the entire time if I were their parent who got news of the situation. I have been expected to proceed as if nothing has happened on days where yet again the country is dealing with tragedy unfolding as I teach. I have had to consider what the safest spots in every single classroom, hallway, and campus might be. I have had to listen to commentary that teachers should be armed and feeling like both that is not what I signed up for nor would ever want to face knowing that I have never held or shot a gun in my whole life.

I hate that the idea of a world where violence doesn't happen so prevelantly that we have become immune to it seems utopian. I hate that people have to live in fear of going to their places of worship, being targeted for aspects of their identity they cannot change, going to their school that is supposed to be a safe space, and other routine life activities. I hate that no matter how many times I contact senators, support organizations working to reform laws, and hear the "thoughts and prayers are with ____ community" it doesn't seem like things are a truly being considered by those who have the power to change things.

This isn't about whether or not people should be allowed to own any guns entirely, if mental illness is the main motivating factor of what lead to the violence and how the continued stigma surrounding it are dangerous or how x specific person is not doing their part in their position of power to evoke change. This is just 1 person's reality and part of millions who have similar stories. This is about not being a bystander who doesn't even try to take action. This is about how as a citizen of the world we each need to be proactively doing what we can to ensure our friends, families, members of the community, and outsiders who look to us to do the right thing are able to simply and safely go about their lives. The countless number of people who have been killed cannot be forgotten. As Elie Wiesel said once, "to forget the dead would be akin to killing them a second time."

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