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How Did I Get Here? / Diagnostic Failure (Take 337) -

Nothing to See Here

Well yeah, there may be something wrong with me (after having decidedly failed the EMG / Nerve Conduction Study two weeks ago…), but that "something" remains a mystery. I am now being sent to a neuromuscular specialist to have a muscle biopsy performed.

And here's the funny thing. I'm not sure if any of you recall, but my original intention in having "temporarily" relocated to a nursing home was to have a MUSCLE BIOPSY. Easy access and relatively easy transport were my motivating factors in taking this monumental risk. Being placed in a facility of this kind seemed to be the most viable way to receive a diagnosis, and perhaps… treatment. A resolution. Something… after six years worth of bed bound isolation where nothing was ever happening -

Of course, what happened (somewhat unexpectedly) is that my former wife dumped me soon after I initiated this master plan of mine. What in essence, became My Final Exiting. I provided this former person with The Opportunity to get rid of me (forever more). And clearly, this opportunity was far too tempting to resist. Having "temporarily" left, I in effect, permanently lost my squatters rights immediately subsequent to my departure.

So here my jettisoned bodily remains linger… having been ejected.. Rejected… Umm, whatever. Right?

I am at long last, where I wanted to be… on the verge of having a muscle biopsy performed. And also, having humans love me. Or in the least, having humans within my midst act and behave in a manner that leads me to believe I am well liked. Yes, I am now accepted, instead of being barely tolerated. I am a welcome burden, rather than an unemotional drain upon valuable resources. Perhaps most importantly, I am no longer openly resented.

Exhale, right?

Immediately prior to writing this missive, I awoke suddenly from a frightening dream. No, not frightening… ummmm..

The details aren't important. But, my former step-daughter hugged me. Twice! My first real hug in years. And this "hugging" dream freaked me out in a major way.. as I was once again reminded that no one would touch me or hug me or… anything, for an extended period of time. And the only named reason why I was shunned? Illness. Having been told repeatedly, "It's not you, it's the illness."

And due to illness, I was no longer valued or worth being loved. I no longer offered enough. I didn't deserve hugging or human touch, because I was stricken with an unknown.

Anyway, I am VERY involved with other humans these days. I open up everything and all of me as often as I can. Am I leaving myself vulnerable? Hell YES. But beyond murdering me, what more can any one individual possibly do to me? I'm already staged at the bottom rung of an impossibly steep ladder. I'm either at a starting or the finishing point.. determined simply by the thoughts rifling through my head. I do not, as of yet, feel finished.

Another sudden dream hatched as I awaken at 342am - subject matter? Involves The Former Person.. wearing a false face in my presence.. wanting someone else. Experiencing that other person.

Meanwhile, and immediately prior, she and I witnessed lightning brewing within thunderstorms of undetermined severity from a safe distance, as we walked side by side.. freely conversing (me, mostly explaining)... before eventually seeing that which I did not wish to see.

In this reality it seems somehow that I am "Never Enough" … which is also the title of a song by The Cure. So for me, a theme song in some standing.

It makes no matter, as apparently dreams no longer hesitate. Yet, my diagnosis continually eludes me.

With no disability pay or benefits forthcoming, I must remain penniless, constantly begging for anything and everything I need. But what of wanting? Yes, there are a few token items I am wanting… which means, I am NOT there yet. I MUST first lose this desire to have and to hold. My object desire must be renounced.

And also, my neurologist was angling hard for Myasthenia Gravis as being my ever elusive diagnosis. But my blood work doesn't match. Nothing ever does. I am an outlier amongst outliers. I am an exception beyond exceptions. I am nothing bounded by nothingness.


H


My Ambulance Ride -

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Comments

Sorry for your troubles, Howard. I can relate to at least some of this, with my being bedridden for over five years, being disbelieved by family and friends and gaslit by doctors, having an elusive diagnosis, etc. That said, I think this is one of your best pieces of writing. Keep hanging in there, man.
 
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First, i find it good that your feelings are coming forward...reaching to the surface for air long last. Their mission? To be felt. To be seen. To be heard. Dreams are an incredible way to initiate the feeling and healing that we lock away in rooms, many times in order to survive. It is so understandable these feelings are wanting to come up. It means you are growing and your subconscious feels safe to process some of this at long last albeit it may not be a comfortable experience. Have you found yet if you have access to counseling to give you an ample support system to process some of your trauma?

It absolutely feels like a twilight zone episode that so many of us were completely rejected by family....simply because we were unwell. It speaks volumes of the human condition and things we would have never been privy to witness or know, had we not experienced this journey. Mob mentality is a strange thing when people experience the unknown...and other things mixed along with it. This song reminds me of the saying 'a gift in strange wrapping paper'. Sometimes we have to feel the very raw and real emotions of our situations. I honor that in you, me and all of us here. You are loved, you know this. but it doesn't erase the pain of feeling we needed to prove our worth to exist as a human for so long. Which many of us here can relate. It turns out, we are perfectly worthy JUST for our existence. What a freeing but painful realization for me, at times....for obvious reasons.

Anyways, the artist wrote this song about his ex girlfriend. They were in a band together for years and had some very intense song duets they performed regularly...and then they weren't together anymore...and she became an item with the piano player. This created many feelings in Alex Ebert (the song writer) and he realized it was teaching him many lessons he had read and studied in theory but now he had this unique opportunity to experience loving someone without constraints and it was really hard for him. It reminds me of this illness and what it has done to our relationships etc sometimes.

Oh, you're making me stronger
Oh, you're making me work, work, work
You make me realize
How I can change
You make me synthesize
How to be from pain


Our system is ....immensely struggling, understatement. Were they able to locate your DL or SS information to make copies? Becaaaaause, if you have those, you can open a Bank of America checking online (you don't even need to be in person) and then a gofund me can be started. You can have access to some much needed funds to tie you over while you fight hard to get diagnoses and disability which as you know can be a lengthy process. You deserve this. It isn't begging. Although, i struggle at times with my gofund me as you know...but its opened avenues for me and completely voluntary from good hearts waiting to help other good hearts.

Big gentle hugs from all of us here today. You are an incredible human being. I am sorry things did not go as fully planned with this neurologist. I know new ways will be made and you will recalibrate but honor the vulnerable space you are in right now processing many different feelings coming up.
 
This post is Blog Oscar-worthy. Not that you seek any awards.

I"ll need to digest, and processing here has slowed down due to ongoing PEM issues.

Am I allowed to merely enjoy how perfectly you articulated this?

.."my jettisoned bodily remains linger… having been ejected.."


and now I simply wonder how to get a Pro bono disability attorney, which is what our friend did ( after several years of BS on his own and numerous rejections) he got it all in arrears.......
 
In case you were wondering...

Looks like it's been a week already (since I posted anything). So you know, I am generally okay .. dealing with some feeding tube related (and feeding) issues - hoping the new J-tube settles in soon - procedure went well - doctor very experienced with procedure, which helped tremendously

Otherwise, hope everybody is feeling reasonably well :)

Take care,
Howard
 
In case you were wondering...
Actually, I was, and came to this thread to post my usual "You've been quiet too long, a girl worries...", so was greatly relieved to find your post here ....

I'm also really relieved that you finally got a Dr with a thorough understand of your feeding tube issues, and extensive knowledge of that procedure ....

Be better. Post when you can :hug::hug::hug: .....
 

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