Heal My PTSD
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Was suggested I belong here too, but I am unsure if I can be helped

My wife experienced an absolute medical horror show 15 +/- years ago. One mostly small issue, 1 quick surgery on her head turned into 5 surgeries over 3 years and left her (and me) devastated. The results were nothing short of catastrophic for us. At the best hospital in new Hampshire with one of the worlds best neurosurgeons....and she was ALWAYS ignored, ALWAYS minimized...and the doctor was sloppy and careless because it just wasn't that big of a deal until his stupid made it one.

Both my wife and I skipped doctors after that....despite insurance, we never, not once went...never even met the primary on my insurance card.

That changed last April...I got a thing called Bells Palsy...think it is a stroke..terrible headache, half your face goes dead....not serious though. I ended up in ER, then my sister suggested I really needed it followed up on and referred me to a GREAT primary care doctor.

And of course it got worse...my doctor, hearing I had not even seen a doctor in over a decade was pretty thorough...and I knew I was so screwed when the DOCTOR called me (not a nurse, not assistant) with "oddities in the blood work".

So short story, Leukemia now...

I am very good at dealing with regular crazy....never bothers me. Medical Crazy, well I don't think so good...and frequently get overcome by anger, rage, frustration and the need to lash out and attack (which is so not me).

But I dunno how to even LOOK at 15 years ago, let alone deal with it.....I had blood work done yesterday and I am already thinking I have an appointment on the 11th with my hematologist ....and I think she ignores me ...and I know there is going to be a confrontation....but, ok I admit it...I WANT it, I want to rail and rage at her for ignoring me....which is 100% NOT me...she is nice and I like her even

I made a post recently in the CLL forum you can go read to see what I did recently and how much I regretted it...but I am pretty sure I will do it again or worse....

I dunno what to do....I am not afraid of dying at all...but I am terrified of doctors killing me because of being ignored or because they are careless....

Link to post I made over in CLL is here

healthunlocked.com/cllsuppo...

Scott US/Maine

Medical Crazy In Full Force This Week

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Hi Scott,

Welcome to the community.

After what happened to your wife, I can understand why you avoided doctors. It is a big deal what you both have been through and your behavior has roots in what happened.

I was wondering if you could try to explain your background to your doctors so that they understand you better. I think that the psychological effects of an illness are equally important and should be discussed at your appointments.

Anger, frustration and avoidance is all understandable in your situation. It is a normal reaction to a very abnormal situation you went through.

Talking about frustrations and emotional aspects is important.

Take care....I hope your appointment goes well.

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I don't have a clue how to even think about it let alone talk about it.....it turns me from a tolerant easy going guy who does not care what real or imagined god you pray to, if you have a better or worse tan than I do, or what is between your legs.....into a monster that will lash out any way I can...rage, anger, hate and fear replace love, happiness, hope and laughter....and I don't even know how I am

Scott US/Maine

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I hear you, Scott.

Unfortunately that is sometimes the effect of traumatic events (however you phrase it).

At times all I can think of is survival and I feel like a monster myself.

It is often invisible and other people don't see the depths of it, which can make it more frustrating.

Well meaning advice can add more frustration and feeling like people don't get it.

The best I find is to be validated and have someone say "I hear you".

Anger and frustration are normal and as valid emotions as any other. It is just so hard to accept it.

I couldn't accept things for years and I was continuously at struggle, fighting against it even when it was in the past. Forcing myself to accept wasn't an option, it didn't work. I just needed to work through things and it took a decade. Even now there are times when I am still struggling but I do believe in finding ways of processing things when something shifts inside.

I needed to find my own path (inspired by others). Anything imposed on me wouldn't have worked...

Thank you for speaking about those extremely difficult things honestly. That is a brave thing. Having the courage to say things.

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traumas from dr.s and caretakes are terrifying and so common...i thought it was normal that when you were very sick to know you are in the best hands possible. i read a book recently called "when breath becomes air" about a nuerosurgeon and his expiriences treating patients and then becoming a patient with brain cancer. there are treatments you can do to deal with the traumas from 15 years ago or from any time in your life that are very effective. i do nlp, and i tell everyone on this forum about how much it helps me and is so tangable. and there are others like emdr and somatic expiriencing that i heard good things about...these therapies can make everything you are facing much less complicated and overwhelming. wish you all the best

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My wife had what is called an "Osteoma" a non cancerous tumor that grows on the bone...normally they grow on arm or leg and are 100% ignored. My wife fell into the small group of it growing on her skull...now sort of serious...will grow both ways, compress the brain sort of thing...gotta come out...ok, no biggie...like drilling a tiny door knob...

Except the horror started almost immediately...she was in agony from day one...and every day when we called they told her "take a walk" or "put it out of your head". We were both medically stupid (our term) back then and understand now they just thought she was trying to scam up some pain killers or something (I mean how stupid can people be...like she just grew a tumor on her head for pain pills).

After a week I looked very carefully at the surgery site....two of three small screws holding the titanium plate had backed out, the plate (dime size) was floating and the entire site was badly infected. I finally called told them I would take her to the ER if they (best hospital in New Hampshire) couldn't see it immediately and oh, she was a lawyer...and the lawyer part was the ONLY reason we got seen (after waiting over two hours).

The quack neurosurgeon (rated one of ten best in world) took one looked at her head, looked at both of us and said "How could you have possible let it get this bad, you should of called sooner. She needs surgery right now or could get a brain infection and die."

Pretty much that exact situation happened 4 more times over next 2 and a half years...until finally we took her to Beth Israel in Boston for a final surgery.

My wife was never helped, was in fact hurt more than the problem...and by the time it was done she was a basket case....and no one cared...no one in a white coat took responsibility....just tried to play more stupid doctor games....

This is of course getting bad for me cause it is doctor week...got blood done yesterday....see my Hematologist next Monday....and I already know she is ignoring me and there is going to be a confrontation....no, that is not 100% accurate...she is ignoring me and I WANT a confrontation....I WANT to lash out at her....I WANT to make her feel shitty as a person I wan to rant and rave and call her names and say horrible things to her........I want to share with her exactly what doctors shared with me.....a feeling of no one cares and the world is nuts

Scott US/Maine

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that is terrible what your wife went through, what you both went through. its absurd, so disturbing. if you want to rant and rave then do it by all means, but it won't get you far. this may be naive of me, but is there any way for you to find a doctor you trust, who you feel is the most compitent, responsable doctor you can find?

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My PCP I trust and like. Just him. I have Leukemia and need a Hematologist I also trust....I am looking for my 4th.

Previous link is here...

healthunlocked.com/cllsuppo...

Scott

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