Hi, my name is Minime21. I've been diagnosed with AVMs in both my eyes and my right foot. I developed CRPS in my right foot which has now spread to the lower leg after an attempted embolisation on the AVM in my foot. I suffer with IBS, migraines, and anxiety.
#MightyTogether #ComplexRegionalPainSyndrome #avm #IBS #Migraines #Anxiety
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I have been disabled since 2003. An AVM ruptured in the back of my brain. I was 32 at the time and I'm 51 now. Long ago, I accepted what happened to me and everything I have to deal with for the rest of my life. It's not fun, but I can joke about my disabilities at this point in my life and I have learned how to incorporate them into my life. I found new interests and things I enjoy to keep my mental health positive.
Aging creates new challenges on top of what I already deal with. I was diagnosed with sleep apnea couple years ago, I had skin cancer, memory issues, and all the preventative medical exams someone my age needs.
I went and saw an ENT doctor because there is now an implant available to use instead of the machine and mask I have to wear every night. The doctor implied that I am borderline sleep apnea so he gave me some equipment to do a home sleep apnea test. I had to wear the rig in the picture. I was told that the best results come from sleeping on my back. This is extremely difficult for me, I sleep on my stomach to avoid having my head spin from laying in this position.
I took the doctor's advice and tried sleeping on my back. That didn't work out to well for me. I woke up 3 or 4 times during the night. I believe I stopped breathing because I woke up catching my breath and inhaling a lot of air. That doesn't happen when I sleep on my stomach. It scared the crap out of me and I finished the 3 night test on my stomach.
It really affirmed why I sleep on my stomach. My brain does not regulate some of the autonomic functions like breathing correctly.
I can't say what things I will have to deal with as I get older and I can't say that I will enjoy them, especially with the things I already deal with in my disability.
I will deal with any challenge as I always do. I accept the challenge and conquer it.
#avm #Disability #challenge #MentalHealth #Trauma #Aging #autonomicfunctions
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I trusted the wrong person,again.This time,I knew but took a leap.I put it aside because I saw my similarities,again.Fate and fairy-tales,matched.Lies,
again.Not from me,me, told too much truth.There are always unanswered questions.I am learning again,I can not live this cycle,even if I wanted to.I wasn't like this before 2017.I've been told it is my environment,my dna mutations,chemistry,my past,my anxiety,my hypothyroidism,my AVM and my TBI.I have few bad days and I'm personally attacked for having an episode,being sick and not going anywhere.it isn't easy driving because of my meds.I am not that sick in the head,needy or a scared person.Others have a version of me that is beyond imagination and all hearsay.I was vulnerable because I wanted to be.I wasn't fooled or played.I was lied to.I felt each time.I was disappointed and relieved.it was never necessary.I expected a choice.I am easy prey.I trust too easy,when,I want to.People think I'm afraid or unaware.No,I see it,feel it and am a few steps ahead.I give people the space to be themselves.I won't question unless I feel it.I havent been wrong.Ive tried to explain it to the closest to me.Ive lived with the disfunction.I know munipulation.It is not necessary,if you know the other is going to actually be honest.I was looking for distance,time and healing.I am in the thick of my assessments.After being pulled back and forth,disrespected and challenged daily,I fell back into the same habits.I am feeling all the anger,mistrust and asking the same questions,again.I am going to keep getting stronger,wiser.I hope I dont remember.it was easy for them to forget.it is only one person.All of my best were thrown away.
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Radical Acceptance...nope,not Im not there yet.I am with my employment situation but not the remaining baggage.Take accountability for what,being kept in the dark?Believing people who lie to my face and behind my back.Accept family treating you as a storyline.Sorry,no I do not accept it.I do not accept Dr.s lying or misrepresenting.I do not accept that my parent knew and never told.I won't accept being told everything is fine,when I can feel it is not.I will keep telling how I feel and I will keep asking g questions.Why and how,Im expected to face my own while others keep kicking me.And I am not playing victim.it is the sad truth.I have allowed people to lie and use me.I am too nieve.I want to think people are being honest,ecspecially when I've begged,begged, begged for honesty,they arent.I kept asking and still am given crumbs for responces. I can only be that with and for myself,from now on.I'm trying my hardest to think of others needs,but what does lying to me get anyone?
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I rarely write anymore.My paranoia took that,as I reflect.I enjoy the contrast of color in the photo,the yellow,gold against the wood.I have been in over my head before with peices but these cant come quick enough.I spent days resenting the tools,having them.Days spent,fighting to focus without being distracted by,well a speck of dust.I am exhausted,physicallyand mentally.I know the other is relieved,I feel it.
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I have hit a wall.I'm hanging on after a couple weeks of being hypo and hyper,not sleeping to oversleeping,overstepping, coordination or patience for myself or others.I know whats triggering it all,I am aware my actions and intentions are contradicting.I pushed those away who were beating me down.I am paranoid,delusional and angry,basically.This is how I imagine Im seen as.I have been completely open and forthcoming on ny diagnosis and it still puts the people I adore at a distance and lying to me.to see your entire support system as untrustworthy,is this self destructive or a breakthrough?The company you keep,as messed up as I am,but wont admit or see a need to improve and grow themselves.I feel defeated and alone.I feel foolish, for trusting all of them.As well,as aweful, sad and I still hear their criticism,daily.But now with reason.Do you ignore it or talk back.I could ask a million times why, answer will always be,because I let people treat me that way,I give them that benefit of doubt,always,even knowing I'm going to be hurt again.I am tired and shutting her down again.There isn't much left in me,for anyone.
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I haven't written in a couple months.I stopped reflecting on the past two years to move forward.it hasn't worked.Ive been here before and I am aware after the fact.it is during that I cannot see.I can't say I remember every dissociate moment.All I know is the phsical and confusion after.I know Im ruminating and trying to answer questions that can't be answered.
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I am in therapy and for me,at this moment,all I can and want to handle.I know facts from delussion now,to a point.I was part of a study,unbeknownst to me,for apoximately over a year.it has been closed,my, case.my prospects or prognosis so to say,I am deconstructing as we speak,daily.I feel it and to be told,Im looking for attention or couldn't feel it is insulting.
I've had sever cognitive decline,noticeable to excollegues but not my closest.I do not have a circle to surround myself with.Id love to beable to collaborate with others,like me.I have a Cerebellum AVM,grade 6,inoperable due to size,a lime and location,lies deep in.After a life of trying to keep up,my heart has taken the toll,as muscles too.my heart, has a congenital defect and irreversible damage.I was not an athlete,but I was active,extremely.I lived to go to a club and dance, to move.it was euphoric,any music that brings out movement.My veins are small,collapsing and bleeding from micro tares under the pressure.There is no where for the pressure to go now.Whats next,who knows.Being Mindful is truly,my only treatment.Sucks when you have to try to fix a broke brain.Scarey and unsure I want to revisit this again.im getting less and less sleep.im hurting like before and am depressed.I see it.There is too much to be done and well,not enough time that I always thought I had.
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I am not in a good place.People around me,they withhold and munipulate me,alot,its everywhere.They deny it,project it on to me and I'm the punching bag,for unkind judgments and assumptions.Im hurt and it is no longer beneficial for me to keep these relationships.Im learning why I have my unresolved trauma,where I have to dissociate and why.I never imagined my body would physically say enough and in order to keep a life at all,I have to save myself from all of it.im no longer compromising my self for this anymore.I've known,for months,its been a game to see how my memories are maybe?I, can sleep at night.I care too much about myself now.I do not have to answer to any relationship that treats me this way,at all.I will keep being called names,delusional,oversensitive,
many worste things behind my back. I've always known,sad,that life can be taken away fast,it doesn't change some people,at all.it is what others can get.im done apologizing for being sick.im done explaining how Im doing or what Im going to do.Im not there.im still stuck accepting all of it.If anyone knew,they'd know,its the worste thing you can do to me,ignore,
repress,munipulate and lie about me and our life.
1 reaction I'm realizing how angry I am.I have lost years,not by choice.Brain injuries and damage.I can't go forward without going back.im only a year in and I am not doing well finding out truths.I spent too much energy questioning all those around me,because my brain would not process certain events.no one considered my feelings or asked.No one asks.I've spent my whole life not trusting anyone.no one has proven completely loyal,not once.The whole while, I'm carrying secret after secret,for other people.But when I share my secrets...no one stays around.I have too many.I am at a crossroads,again.I once said
No more.I'm through with it.I have too many to carry.People don't want to face me,have relationships with me because I know,all of it..the ugly truths.I love with full intentions of staying and growing through our flaws.Others don't want to.People tell me or show me who they truly are,by fault to push me away.The mask is clear as glass.Ive been this way my entire life.I don't enjoy it.It is painful to see someone else in pain.to feel their intentions though,to feel it before it occurs,took years to understand.When you are surrounded by dysfunctional relationships and toxic dynamics between people,you see the darkness in yourself.it is painful to acknowledge and even more when you've caused the same on to some one you love.I do not know how to love someone.I can with a child.From afar or near...with adults,I do not engage.Out of sight,out of mind.I can be in complete admiration but wont engage. I do not know how to.I have no problem with the words.The action of affection,I freeze.I want to learn.I crave it,need it.But it hurts to be loved.I kept it in,for years on end.Expressing it,any emotion when needed,I do not want to be punished,rediculed,rejected,abandoned...AGAIN.
To have that given to you by an adult,as an adult.im in therapy for it,not to stop it,to learn to live with it,learn to say no and I'm not the same person I was.I don't know who I am,I'm making her up as she learns.
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