Healing From Complex Trauma & PTSD/CPTSD

A journey to healing from complex trauma.

Hospital Tests Results Not Good News & I Will Always Be My Only True Advocate

18 Comments

The results of my tests in hospital are:

  1. A debilitating, non curable, difficult to treat illness, that is potentially life threatening and unusual at my age. And if chronic – which mine is already – can lead to heart failure, heart attacks, stroke. http://www.mdedge.com/ccjm/article/95292/cardiology/preventing-and-treating-orthostatic-hypotension-easy-b-c
  2. A tiny hole in my heart.
  3. Possible mini stroke.

Have to have more tests as an outpatient. I guess that’s when they will talk about medication, or something to do with managing it. Maybe. If they can be bothered. The cardiologists were pretty blasé about it all. I suspect it would be different if I were someone with private health cover. Public health patients are often treated as though they don’t matter. I guess they deal with worse cardiology related issues: people dying, full heart attacks, open heart surgery etc. I’m sure if I have a full blown heart attack or major stroke – they might seem a little more concerned. Maybe.

I’m someone who does research and finds quality info and info that often the general public are not aware of. I’m not easily fobbed off by doctors who treat people like they don’t deserve to know the truth of their illness. Who treat people like it doesn’t matter if they die.

I’m trying to be okay with this new health info.

I’m aware my genetics (family of origin have heart/strokes etc), my severe trauma history, having PTSD all my life, now these actual issues occurring….. means my risk for life threatening issues occurring are greatly increased.

I’m pretty numb most of the time. I guess that survival mode kicking in.

I need to be strong for my kids.

So now dealing with chronic physical and mental health issues. I’ll do my best to manage all the symptoms and hope it’s enough.

And I’m at the point now where it’s easier to just tell most people what they want to hear… “I’ll be okay, I’m strong, I’ll beat this too … blah blah blah. People don’t want hear about your struggle, your fears, your pain. They want to hear what makes ‘them’ feel comfortable.

Something I’ve also learned in this………… is my entire life I have had my ‘stuff’ invalidated, minimized and trivialised….. and that still continues. It’s happening now about my physical health issues…. from doctors.

But, just because others choose to do that to me…….. doesn’t mean they are right, or that they are showing any kindness in what they are doing.

I’ve realised I’ve spent my life also minimizing my ‘stuff’ – as I was groomed to do by my ‘family’ who called me a drama queen anytime I tried to stand up for myself in regards to their mistreatment and abuse. I had to be the opposite of a drama queen and not care about my needs, or being mistreated and it led to other people all my life not caring about my needs, or caring about mistreating me either. And to them trivialising what I endure and the seriousness of it.

But, I do realise just how serious this all is. It’s really fucking serious. It’s life threatening serious. It’s – I could die or have a severe stroke and be incapacitated for the rest of my life – serious.

So, I know I have to make a bit more of an effort to demand this be taken seriously and for them not to just shrug me off. Even if I am only a ‘public system patient’.

I matter to my kids, even if no-one else cares.

And I’ve realised as a result of the last few months …. that I will always be my only true advocate.

It is what it is.

~ Lilly Hope Lucario

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Author: Healing From Complex Trauma & PTSD/CPTSD

I am a survivor of complex and multiple trauma and abuse, who at the age of 40, began my healing journey. I am using my journey to recovery and healing, to help others, to help survivors feel less alone, validated, encouraged and to enable others to understand themselves more. Complex trauma, particularly from severe, prolonged childhood abuse, is profoundly life changing. Complex trauma produces complex adults. The journey to recovery is a painful, often lonely, emotional daily challenge and it is my aim to encourage others in their daily battle. ~ Lilly Hope Lucario

18 thoughts on “Hospital Tests Results Not Good News & I Will Always Be My Only True Advocate

  1. Lots of love to you Lilly.

    As you have learned doctors don’t have all the answers. Find yourself a gifted and trained energy healer. There are plenty of us out there who can probably help.

  2. Sending you lots of love Lilly. I’m so sorry for this news and wish you and your kids the best. ❤

  3. Dearest Lilly, so heartbroken to hear of this news. If it is ok, I will sit with you. I am here and sending you love and strength for today. -athena

  4. Lilly—sorry you got the results you describe. Didn’t you pass out from this at least once? was that why you saw a doctor?

    one thing in your post that is so important is what you said about needing to advocate for yourself. Yes, absolutely. and about medical things, extremely important, doing your own research, the web is an amazing resource for that. i relate to this.

    I read the article at the link you posted. It sounds like orthostatic hypotension is not very well understood medically, it’s a symptom, or complex of symptoms, that has a wide variety of possible causes, and the treatment will depend on what they believe the cause is, but finding out the cause is not always cut and dried, sometimes they have to give their best guess, and then the treatments range from a variety of pharmaceuticals for the most serious examples which don’t respond to non-pharmaceutical measures, and the non-pharmaceutical measures which the article says are preferable. It seems that those are preferable because of the adverse effects of some of the pharmaceuticals, and in the case of supine hypertension, they say that’s one of the the main things to be avoided when treating postural hypotension, but some of the medications can cause supine hypertension, as well as non-pharmaceutical increase of salt intake. So, i hope you along with your own research efforts and monitoring of your body, you have a decent doctor, one that doesn’t have weird personality issues like some do (ego).

    good idea to find out all you can on your own. I googled it after reading the article and found other similar summaries, the article was a pretty good summary.

    I was interested in how it said, or maybe it was another one that i saw, that in the elderly, which i guess means over 65, it’s more frequent, but then looking closer at it, they said of all the elderly people who do have orthostatic hypotension, the great majority were institutionalized people, apparently they mean people in skilled nursing facilities, where people go because of serious health problems, heart conditions, diabetes, various chronic stuff, and the various other more serious things people get as they get older, and that these illnesses themselves can cause orthostatic hypotension, and, they said that many of the medications used to treat these conditions in the institutionalized elderly also caused orthostatic hypotension, so that was interesting, elderly people who aren’t in skilled nursing facilities are just a small percent, 6%, of all postural hypotension cases in the elderly.

    I have gotten the mild version of it throughout my life, going back to my 20s, even earlier during my period, i think. i mean, when you stand up and feel like you’re going to pass out, and you have to bend over and let the blood go to your head. and when i have had it, it’s lasted for weeks or months, and then it would go away and i never knew why. I never passed out, it just seemed like i was about to.

    After reading that article, i’m not surprised you’ll be having more tests, it sounds complicated to find out what is probably causing it so as to know how to treat it, unless they’re going to go with trial and error.

    i guess they clarified with you any medications you’re taking. Some common ones cause it.

    What does a small hole in the heart mean? ?? does it have symptoms?

    I read that stroke is an uncommon result of orthostatic hypotension. Let’s HOPE!!

    I guess they checked your thyroid real good? and adrenal glands–or they’re still checking.
    both high blood sugar and low blood sugar can cause it.

    In one article i read, at MayoClinic.org, it says that heart problems, like slow heart beat , heart valve problems , heart attack and heart failure all are possible causes of orthostatic hypotension , but they didn’t say the hypotension commonly causes those things. That would be good, if it it wasn’t likely.

    i don’t think you can ever be overdramatic about your health. Like you say, you are the only one who is going to make sure you don’t fall through any cracks, or as few as possible. CPTSD all about falling through cracks. I’ve had doctors think that i don’t trust them when they prescribe a medication and i want to read up on it first, or i turn it down because i have read up on it, it’s true, there’s a lack of trust there, but it’s too bad they take it personally, it’s not about them. It’s me playing a very active role in my health care and it’s based on my experience, which has involved countless mistakes by doctors, some quite serious, and i don’t mean to insult anyone when i don’t go along with a recommendation or i want to study it first, but i’m the only one who has lived my life, and what i do is appropriate for ME. It’s me who’s trust i need, and that is easier said than done. When others are critical of my choices, or opinions, or fears, etc, my lifelong inclination is to look at myself from their perspective or what i think is they’re perspective, and that seems to justify criticism, of me. so, that is a daily struggle.

    I want to applaud you and support you in being who you are, as you describe above.

  5. Prayers, love, and thank you for being so honest. God’s comfort and strength surround and support you. Hugs ❤️

  6. I am so sorry. My heart is with you.

  7. I care. Jesus be with you.

  8. I have missed you ~ so I came to check your blog….WOW, stay the path to a healthy you. Always know that the squeaky wheel gets the grease…go getum and let the drama queen rein ~ this is for you and your kiddos. Always know that on any given day many of us are praying for you.

    • Here here!! Go DRAMA QUEEN crazy in the name of lengthening and increasing the QUALITY of your LIFE!! AND YOUR KIDS AND IN THE NAME OF ALL OF US SURVIVING THE SAME !!!!!!!!!!
      YOU DESERVE IT!!!!
      ALSO ENERGY WORK HELPS!!! AND
      HIGHER POWER CAN HELP HEAL EVEN PHYSICAL ISSUES.

      DON’T GIVE UP, PLEASE!
      Julia

  9. What I said before was totally from a selfish point of view. Is it possible for you to let us know how you are doing day to day so that we can support you and love you as you have supported us and loved us. It is time for us to give to you!!

    • I have never met such a strong person as you, Lilly. Our emotional issues aren’t of our choosing yet it’s the crappy hand we have been dealt. And I know those emotional issues have a direct link to the physical. My heart just breaks for you. I am continuing to pray for you often throughout the day. Never forget you are so worthy and important to your boys and all of us. I love you. ❤

  10. Lilly, please know we are all pulling for you. I am sorry you have had a less than positive experience with your doctors. Universal healthcare can be both a blessing and a curse, but we all have doctors who should not be doctors whether it’s in a public healthcare system or a private system. I have seen the medical care in the USA and although our universal healthcare in Canada is not perfect, it’s better than what I have witnessed in the USA via a friend of mine.
    I miss your blogs and I am sure that in due time, you will get back to it. Please do what you need to do for you.
    Sending you prayers and positive vibes. Peace and blessings to you, Lilly.

  11. Oh Lilly. I really love the honesty of your blog posts. I don’t know you but you’re a really special and courageous person and I really want you to be ok. You’re so intelligent with finding your own answers. Don’t give up. I wish you all the best.

  12. I just came across your blog and am thrilled with the wealth of information and experience you’ve posted. I’m very sorry to hear about your medical diagnoses, and empathize with you as I know from personal experience how dismissive and dehumanizing the medical profession can be.

    I have orthostatic hypotension, it seems to be a common ‘subset’ symptom within Chronic Fatigue Syndrome, but from reading Robert Scaer’s book The Body Bears the Burden, it sounds like both of these (Orthostatic Intolerance, CFS) as well as Fibromyalgia, other chronic pain disorders, etc) are actually late effects of cPTSD.

    He hypothesizes that the tendancy towards dissociation (“freeze” instead of “fight/flight”) in the face of inescapable threat, especially common for childhood trauma and females in general, causes the body’s protective reflexes and flight/fight responses to get ‘locked’ in… that is, they are not discharged (like when wild animals who escape becoming prey tremble and shake to discharge). This seems to set up self-perpetuating cycle in the central nervous system called ‘kindling.’ If it goes on long enough without the ‘locked in’ protective actions being completed/discharged, it causes all kinds of nasty physical problems.

    Scaer’s book is excellent, albeit a bit technical as it is directed towards other medical professionals, and most of his examples are of whiplash syndrome (another late effect in people with a history of trauma). I wish I had more info about how to treat it, that’s what I’m looking into right now. Scaer discusses some potentially promising therapies like EMDR and Somatic Experiencing.

    I just wanted to let you know what you are going through may very well be a direct result of trauma and cPTSD, though I wish I had something more helpful to offer.

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