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It feels like volunteering to die

3W4DW – prompts: chronic/invisible illness; sexual abuse

Here we are again back where we’ve been before. The landscape looks a bit different with less fog. Clarity would only be helpful if it created momentum yet here I am back where I was years before.

With the recent resurgence of the neck issues via the discs that have shifted over Gods knows how many years it appears I do have to consider the idea that surgery may be in my future. This saddens and terrifies me.

Physical therapy did wonders for it. The continuation at home has kept my back fairly consistently at the better level than it was when I began. Except when something untoward happens in my neck. When that occurs it sets everything a bit off down my back, through my left hip and oddly my right knee. ( I seem to recall that my right knee was jacked anyway.) But still, the back fares far better than it did and the stretching undos whatever goes off. *is very pleased*

Though I am grateful to be one of the chosen lucky enough to have health care coverage, the details of it right piss me off when it comes to PT. I understand the mindset of insurance companies that dictates more $$$s for them than for the medical field, thus a restriction on benefits. It is the way they restrict. My insurance is 60 days for "X" condition per calendar year. Got it. However, it is "60 days from first day of PT for ‘X’ condition" regardless of how many times you go. So theoretically you could go a gazillion times, or once, in the 60 days.

My opinion, which granted fits into the "best for me, not for the insurance company" category is that the benefit should be "60 days/sessions per condition per calendar year distributed any damn way just do not exceed 60". This is one reason I am not running insurance companies. Our old insurance did it that way, but I didn’t need the benefit. <insert laughter here> If such were the case for my current insurance I could do one visit per week and not even exhaust the benefit and when combined with the stretches I do at home live virtually pain free Every. Single. Day. That would be deliciously awesome, yes?

So that’s where I am at. Without the manual therapy I have a few choices when the neck returns to its previous state:
1) Sit in a chair and wave at life as it goes by (tried this briefly in early Fall and decided I’d rather eat a bullet)
2) Just continue on doing what I’m doing AKA living my life and hurt like hell some days
3) Go back and consult with the neurosurgeon with the idea of being open minded to surgery at some point

Number 3 is the one that feels like volunteering to die. If the dying felt merely like it would physical death (and there is that chance and fear considering my prior experience with surgery) I might be able to get on board with that. But the death is more than physical ~ emotional, psychological ~ pieces that if they die will change everything and it feels like not for the better.

First let us address the rational fears. Well now that builds confidence. Feel free to Google it yourself. There are many testimonials for the wonders of neck surgery. They are on the surgeons’ web sites. *cough*

The reason this has reared its head again is because I’ve been doing my stretches, I’ve been mindful of my body and its limitations in spite of the "ugh" factor such a mindset invokes and somehow I still saw the return of the ouch in my neck and the knife stabbity pain down my upper back. *scowl*. I’ve been tending the other parts of me by eating properly, resting appropriately, minding my spirit and utilizing laughter daily. I’ve played "we are dreaming". I cannot pinpoint what particular activity triggered the renewed onset of symptoms. I can semi-pinpoint 3 separate incidents that occurred over a number of days that collectively may have contributed yet none of them were OTT for my health. What I cannot do is point and blame. It would be better if I could like when I lifted the organ, or the treadmill, or painted a bunch of ceilings. Because when you can point and blame you can then avoid the activity or movement that caused the pain.

Addressing the (called by others) irrational fears is decidedly difficult. I do not consider them irrational. I consider them safe and sane. I attempted to talk to my husband about these fears surrounding the recurrence of pain, the recurrence of the pins-and-needles bother running down my arm and through my hand (since subsided) and my wondering out loud about surgery.

I mentioned needing a pass until after the wedding in October because it would suck to be paralyzed for it, or dead. I mentioned that I didn’t want to spoil their day that way. (I really really really do not want to spoil mine that way, either.) *imagine look of horror on husband’s face* People who know me will think I was merely deflecting with sarcasm. Nope, not this time. He said, "Well, we don’t want to think way!" I replied, "Yeah, because the last surgery went so well." He responded, "True, but ….." Me: "But…… what is there to make me think this time would be different, except maybe ‘different’ equals dead?"

[Backstory: I was scheduled for a hysterectomy 100 years ago or so. I had to fight the insurance company even to get it done because it was the "year the HMOs cut back on hysterectomies". Every year there was a condition they picked that they felt was managed incorrectly medically and they were going to stem the tide of what they deemed overly involved and unnecessary interventions for it. All the HMOs did it and one year it was asthma and another – my year – it was hysterectomies. It was an automatic turn down for approval and you had to go through the appeal process to get it done. By the time I finally got to surgery I had lost so much blood in a slow leaking process you could barely see the veins on the back of my hands. For those of you who’ve never met me, they are naturally prominent.

To stop the neverending bleeding along with assorted associated discomforts surgery was the path to survival. Oh, the irony of so much of this is so grand it seems affected! When the turn down came from the insurance company I dragged my sick sorry ass and my furious husband to the medical libraries (of which we have a few here in the ‘burgh) and copied copious amounts of text from the medical journals and textbooks and anything else I could dig up to support the case for surgery.

To my husband’s credit he pulled out two things at the beginning of the hearing. One was his swagger and the other was a mini tape recorder that he placed in the center of the table and with a grin asked, "You don’t mind if we tape this, do you?" and hit record. The guy looked a bit stunned and we started. This is where my verbal ability,  limited general medical knowledge, and capacity to swallow my fear came in handy.

We won the appeal. I "won" a hysterectomy. Go me! (And oh, someone remind me sometime to do a post on the Very Important Information they don’t bother to tell you about how your body, sex, and orgasms will change post-surgery. La! I can only imagine what other things would have been added in had they taken my ovaries, too.)

The surgery experience itself should have been easy-peasy for the doctor and for me. Vaginal hysterectomy – no scar, lesser pain than going through the abdomen. Ok, easier for the doctor than me. *laughs* Turns out it was for neither of us. I feel strongly that his deep desire for retirement started on that day.

Into the OR we go, I get knocked out I think (twilight style with some very low spinal block), a bit of slice and dice and back out and coming to in recovery. "Hey, honey, everything went well, how are you feeling?," chirps the nurse. *anesthesia mumble* ~pats arm and walks away~ Comes back checking the entry site for the surgery and the "discharge" as they so politely call blood which really doesn’t sound much better. Sudden escalation of voices, tone, and the air thickens with the tension.

I’m told we’re going back in to surgery as I am "bleeding a little". Lovely. Away we go! Knocked out again. Vaginally again. Bleeding stopped. A bit slower to wake up in recovery. Pain. Same reassurances from nurse. Back quickly to check for "discharge". Am bleeding again. By the alarm in their tone I am guessing "bleeding a lot", but I am flat on my back, so what do I know? Voices ring out blood type and feet run, number of bags of packed platelets decided, much rather frantic activity. The bleeding has increased to a point of my blood pressure beginning to drop I gather by the fear lacing out of their mouths and into my ears.

"Honey, do you feel any pain up at your shoulder?", quivers the nurse’s voice. "No," I reply, confused, wondering if she’s aware of which surgery I’d had. "Good," whooshes out of her carried on a sigh of relief. She turns to walk away and suddenly I feel the most excruciating pain shooting up both sides of my back and into my shoulders. I know this is a bad thing having just been asked about it. I call the nurse back over and inform her I now feel the pain up in my shoulders.

I am happy to say she did not faint though she sure appeared close. Apparently the blood they could see was nothing compared to the leaking occurring inside. That blood was pooling all along my spinal cord. To this day I remember that pain clearly, no anesthetic amnesia for me! I would go through all 3 labors of my children combined before I want to feel that pain again.

The doctor runs in, jumps up on the gurney, straddles me, does Gods know what with his hands as I watch his face become so frightened I actually want to comfort him. I feel that knowing in me that I am not going to die today and I want to tell him. I’m saying it in my head, but I’m too far gone for it to come out of my mouth. (Thus his fear because he’s seeing me from the outside of me and I am falling unconscious due to blood loss.) This third surgery occurs through the abdomen and to the aesthetic credit of the doctor he makes the incision right at the hairline, but seeing as how it is an emergency situation it is a bit sloppy. Not really an issue I can manage to get too awful upset about.

I’m here. I lived. Much to the surprise of some hospital personnel who came up to visit me the next day as proof that I’d lived because they had gone off shift during the crisis and were certain I was as good as dead. They were so shocked to hear I had lived when they returned to work that they came up to see for themselves, to tell me this, and oddly, to congratulate me.]

So there’s your backstory on my encounter with surgery. As you can see I was not being sarcastic. I was being full of fear. Had this been my first experience laughing at Death and living perhaps I would have less fear. I’m wondering how many times does one get to laugh at Death and live to tell the tales? Do I have another one in me?

I then remind my husband of my other "irrational" fear. We fall back into the realm of the sexual abuse and later subsequent sexual assault at work. I am smart. I intellectually understand "surgeon with scalpels at my neck" ≠ "sexual predator with knife at my neck". Oh for my intellect to be the only aspect involved in this! But we are all of ourselves and all parts of ourselves all the time. Even when we aren’t.

My neck squick is far beyond anything resembling normal. I know this. I cannot even wear turtleneck shirts. Every winter I try to wear one. Even "mock" turtlenecks have me clawing at it all day long, pulling and stretching it so I can feel like I can breathe, that I am in control, that I can live. I am tense with it on and easily agitated. This is good for no-one. After my "experiment" I do not wear them for the rest of the season. I know every year I will try again. Every year I believe I have done enough internal work to break the spell. I tried it again this past winter. I do not lack optimism! I do lack turtlenecks in my daily wear.

The "nobody touches my neck" is not reserved for surgeons. It extends to everyone. E v e r y o n e. (Almost.) I have suffered through touches from various medical personnel over the years. It is rarely worth the angst and subsequent fallout so I moved on to just avoidance. This works wells. Touch my neck? Kids, friends, mate – no, no, no. My loved ones accept this about me and I am grateful for it. Other people risk quick and violent reactions they do not understand yet are sufficient to keep them from ever attempting to touch my neck again. I’ve learned to calm this reaction quite a bit over the years. *is proud*

So …. surgery on my neck? Abstract consideration alone is more than enough to make me think that option number 2 listed above looks delightful. This would be hilarious and absurd if I were observing it from another person’s point of view. I am not. I am observing from within me. It appears particularly unfunny and not the least bit absurd from this vantage point. Leaving me to wonder … where does one go with THAT?

Apparently one goes nowhere and remains exactly where one is. Fancy that.

This entry was originally posted at http://pj.dreamwidth.org/291606.html. Please comment here or there there using your LJ ID or OpenID.

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