Grateful

As hard as it is to go through intense pain, I always think it is harder on those having to watch and who can do nothing to alleviate it. Super kudos to Pete for once again playing nurse, chauffeur, appointment scheduler, meds fetcher etc.

I am SO grateful that, what felt like a herniated disc was “just” a super bad muscle spasm following an injury. You wouldn’t believe how many of those low back muscles are involved in something as simple as putting on your shoes or blowing your nose. I am SO grateful that Pete was in town and I didn’t have to do this alone. And grateful that our trip of a lifetime, starting next Friday, is still a go.

Intermittent, intense pain – such as labor – is one thing. When it just doesn’t let up – ouchies!! I am mostly back to normal – alleluia. Lesson learned that when the inner voice says, “don’t help that person lift that super heavy object” that I should heed it!!!

 I learned that hindsight is always super clear. And I learned, again, that there is no such thing as a separate body part or region. When one area is really hurt, all of it is affected.

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How to help someone who is having a super bad day

For lack of a better identifier, I will lump any big upset or transition into a SPD – a super bad day. This may be a new diagnosis, a recent break up, pain or illness, a car accident etc. Our trained inclination is to say 2 or 3 standard phrases. “Are you ok? Let me know if there is something I can do for you. I had the same thing happen a while back”. Please – as kindly as that is intended, don’t ever say those things.

In milder cases, the person doesn’t need you to DO anything. They need your reassurance!! Phrases such as, “I’m thinking of you. I love you. I care about you. I will be here with you through this. Do you want to tell me what happened?”, goes a million miles towards truly supporting the person. By definition, the person is not “ok”.

For more intense situations, especially if the person is sobbing heavily and/or hard to understand – ask specific questions such as, “Are you in danger? Are you in a lot of pain? Are you bleeding? Do you just need someone to listen right now?”. They will let you know. If they seem confused or don’t know what they need – see the next paragraph.

Let’s talk about SHOCK, FEAR AND PAIN. People become disoriented and often cannot make decisions. They may need some guidance. “Do you need me to drive you to the ER? Is your car out of the road?”. Concrete questions are good.

Know that everyone handles shock, fear and pain differently. Some people become stoic. Some joke. Some are very confused. Some lash out. Their response is NOT ABOUT YOU!!!! It is about them and their descent into an altered state that is scary and confusing.

Do not take it personally if the person rejects your help. When they are more settled, offer concrete things. “I’m happy to sit with you. I can bring you some groceries. I can wait with you for the tow truck”. MOST often, people need reassurance and company.

Lastly, as tempting as it is to find common ground – and I’ve been guilty of this even knowing better by having been on the other side – do NOT bring up your situation. The person with the SPD can barely keep it together themselves. It really doesn’t help, in the crisis moment, to hear you went through the same thing. Maybe down the road they might want to hear about your accident, miscarriage, chemo etc. Now is NOT the time.

And above all – even if you stumble all over yourself and say every wrong thing in the book – presence by a genuinely caring person beats isolation ANY day of the week. So many people have disappeared during my worst times because they didn’t know what to say or they didn’t want to remind me, for example, that my brother was gone. Just “I care” solves all that. No clever words needed. And trust me – no one forgets that they’ve lost a loved one, or that they have cancer, or that they are suddenly single. It is ALL consuming at times.

Remember the Golden Rule and you can’t go wrong.

Provisions for my Super Bad Week!!!

Provisions for my Super Bad Week!!!

Breakfast of Champions

For breakfast, I had chocolate, coffee and my prostate medication.

Whaaaat?

I’m about a week into a possible kidney stone, and keeping my prostate happy is part of the medical regimen. Before juicy rumors start, it’s standard protocol to help a person visit the restroom more often. Well, drinking water usually works, but hey – whatever helps.

The pain alternates from “I must be making this up” to “Find me my friggin vicodin right NOW”. Funny I should put that in quotes because there is no one to utter such lovely things to. Teresa was here for a few days (and so helpful – it’s wonderful what just having company does for a person). Pete is out of the country. I think his leaving the country is like trailer parks causing tornadoes. 🙂

So I wait – and I drink water – and I eat crap because I feel like crap. I’m in a holding pattern waiting for the CT scan to get approved. The CT is waiting for a CT scan. My terpy friends will understand that.

Have a groovy day y’all.

Love, The Kidney Stoner

(This too shall pass – ar ar ar)

Hiccup on the Way

Hey y’all,

It’s been eons since I’ve posted. In the last few months, I have been super busy with all kinds of things. How is that for nebulous? As of late, though, I’ve been dealing with the results of a surgery from last year not having “quite worked” (my words). Doc wants me to go under the knife again but I’ve given her a resounding NO. So it’s not anything life threatening but this latest issue is absorbing a few brain cells, and causing pain and not-so-fun stuff. I’m in good spirits, though, and playing as much music as possible. Some house concerts, and hopefully jam sessions, will be happening here soon.

I’m sending y’all sparkly rainbows and happy unicorns (who has been hitting the Vicodin again, I wonder?)

 

Acceptance

Trying to accept with grace and poise

Despite the racket of my mental noise

Friends are working long hours, they say

And wouldn’t they love to have my kind of day?

But I just turned down my last terping* request

Pain prevents me, I gave it my best

Can’t keep wallowing in what was “taken” from me

Can’t live in limbo as to what will be

Acceptance is daily

Neither welcomed nor easy

The past is over

The “now” is up to me

But f* the platitudes

I wail when I must

This too shall pass

Onwards or bust

(Terping – an affectionate, at least to me, slang word for being an American Sign Language interpreter. I was relatively kick-ass good at it for 11 years until 2 car accidents and 2 spinal surgeries knocked me out of the field for good. Have been trying to reinvent myself for the last 4 years. Do I feel left out when friends tell me how hard they are working and I wish I could? Sure. But I just have to keep the faith that good is on the way.

The War Zone

We frequently hear the adage, “I am writing for myself”. In this case, dear readers, it is true. The following post is not so much a public announcement as it is a making sense and order out of the chaos I have experienced in the last 4+ years.

In the past 53 months, I have experienced:

2 car accidents, 2 spinal surgeries within 6 weeks, 2 other major surgeries – one which required 9 days of around the clock Vicodin, career loss at 48, new career at 51, 2nd career loss at almost 52, the loss of many friends and a support network, countless blood draws and x-rays, steroid injections, steroid treatments which made me insanely ravenous and aggressive, 7 MRIs, 2 EKGs, came close to a full on anaphylactic shock, an EVIL painful test on my vertebral disc, an EVIL painful biopsy, vertigo, loss of balance, difficulty processing information, loss of memory, migraines, tinnitus, a 55 dB hearing loss in one ear which resolved after many weeks (a sign language interpreter who can’t hear is a really bad thing), massive narcotics, fasting and 2X bowel cleanses before surgeries, being intubated 4 times, massive chronic pain and nerve tingling, 1 trip to the ER and 3 cancer scares.

In that time, I have had dealings with: a sports medicine Dr, spinal specialists, a nasty neurologist, a fabulous orthopedic surgeon, 3 attorneys, countless nurses, front desk people and insurance folks who ranged from stellar to nasty, a Mt Everest of paperwork, an internist, endocrinologist, otolaryngologist, oncologist, radiologist, dermatologist, gastroenterologist, gynecological surgeon, immunologist, audiologist, a stellar physical therapist and a stellar psychologist.

I would gladly repeat all that if I could UN-DO the worst:

Having to call the police in another state to find my brother’s dead body

Spending 14 hours on the phone informing and consoling relatives around the planet

Flying 10 hours solo cross-country wanting to scream and cry but having to stifle that in public.

You would think the grand conclusion would be obvious but I finally formulated it this week. The most effective torture with prisoners is pain, fear, isolation and massive uncertainty. Obvious things, like getting one’s neck sliced open, are NOT the challenge. The grandest soul-crusher is despair; the daily grinding down through “death by a thousand flea bites”, as Pete famously says.

The grand conclusion is that I just came back from my own war zone; with all due respect to the military, my own Vietnam or Afghanistan. Methinks it’s time to throw myself a ticker tape parade! *Looking for my tiara and practicing my parade wave. Time to trade in the camouflage outfit for my LONG lost sparkly gown.*