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walks-with-pillow

visit to a small country

Posted on 2014.07.09 at 19:05
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I have returned from a visit to the country of pain, a place where all of us stop from time to time, and some of us live. It is a small country, to hold so many of us; small enough to crawl over, to learn each stone and shard of glass in the road with a sickening familiarity.

My own sojourn began without any real warning -- just a sharp ache in my hip which soon spread east and west. Friends had advice: "Try lying on the floor with your legs on a chair." "Try ice." "Try heat." "You know, it's okay to take four Advil at once. My doctor told me once." Nothing worked. I saw a doctor, who suggested that I might have bursitis, or the beginnings of arthritis, and declined to prescribe any medication. I asked about an injection of painkiller, or possibly an anti-inflammatory. He waved such ideas away. "Let's see how it goes," he said.

This was the beginning of my rough education in pain management. Two days later I was on the phone begging for medication, which was granted (albeit slowly through the layers of bureaucracy); three days later I'd received two separate injections, each of which was wonderful... for several hours. And four days later I was a screaming, crying wreck who was taken to the emergency room. Not by sitting in a car seat; that was impossible. I crawled into the back and lay there on my stomach, knees bent.

I'd never gone to an ER for myself before -- I'd only brought other people -- and I'd always considered it a sort of waiting room for Hell. Avoiding hospitals in general had been a priority. My regular provider, however, was perfectly clear on the phone: "We can't help you. Go to the ER."

And here is the first lesson: that pain scale from one to ten? Don't be conservative. Be communicative instead. The scale suggests that ten is the worst pain you can imagine; well, I don't know about you, but I can imagine quite a lot. So fuck that. Here is my new standard:

(1) If the pain seems unendurable, and you don't know how you're going to get through the next five minutes, though you also know you have no choice; and
(2) If you were told you would have to live this way the rest of your life, you would kill yourself --

--That's a 10. Really, it doesn't have to mean burning alive while demons eat your entrails. Your doctor isn't going to understand you grade on a curve. If you desperately need help, let them know you desperately need help.

A few hours later I was discharged from the ER, having had two shots of morphine that just took the edge off. "Get a referral for an orthopedist," they told me. Also, "A hot shower will help." My friend explained, "She tried that this morning. It didn't do anything." The doctor repeated slowly and firmly, as though no one had spoken: "A hot shower."

They did offer me a walker: "If you're willing to have one."

"Why wouldn't I have one?"

"Some people associate it with the elderly..."

I suddenly recalled a time, years previously, when I'd been in Chicago to visit the set of Early Edition. I was hit for the first time by a burning case of plantar fasciitis, and needed to keep weight off the soles of my feet. I'd been offered a walker by a man in a pharmacy, and had been appalled. "I am not using a walker," I'd said firmly. Instead I opted for two canes, which I managed in tandem like crutches.

This time my attitude was different: give me the fucking walker. As I made my way slowly down the hallway toward the exit, I passed through a small group of paramedics, who, seeing my pain, offered to help me get back to my room. "She's been discharged," explained the friend who'd driven me here, blackly amused at their taken-aback looks. I crawled into the back of the car again -- lying on my stomach provided some relief -- and we returned home.

I spent the next five weeks lying on my stomach in my living room, alternating between pain and a pain-nausea pas de deux. It was hard to tell whether the vomiting was caused by the pain or the medication, which was heavy on acetaminophen. ("Am I destroying my liver, or am I just paranoid?")

My friend/assistant moved in and slept on the floor beside me in the living room, with a Doberman and a Bichon curled around her. She (or sometimes, other friends) got me what little food I could eat and brought it to a table by my bed; I ate lying down, or stood up with the walker for a brief period in an attempt to soothe my digestion. Sitting was out of the question.

Here is what I learned: pain is a box. A light, bright trash compactor that takes your life and squeezes it into about a foot square. Anything outside that box has no interest for you, and soon begins to seem unreal. I'd been negotiating to buy a small place in the country -- a place for the future, a place to write those novels that have been stacked up like planes waiting to land; a place with trees and acreage, where I could walk my dogs off-leash. Suddenly it was hard to imagine that I would ever have a life outside the bright white box; this talk of colorful future days seemed like some sort of fever dream. I put it aside. Besides, who could deal with the complexities of buying a farmhouse? I could barely make it to the bathroom and back.

I remember turning my head one afternoon, and glancing from my mattress in the living room straight back through the dining room and kitchen and out the window to the yard, where dappled sunlight gleamed on the waving leaves of a ficus-fig tree. It seemed as though I were looking at an alien planet.

The next lesson: illness begets illness, as other things happened that I could not account for. I got a sore throat and my voice changed. I saw flashing images in the periphery of my vision -- not, as it turned out, a sign my retina was detaching, but that the blood flow to my head had been affected; better see a neurologist. Spasms would descend on me suddenly, usually in the evening, getting worse as the hours progressed. I recall one particular night, at about two in the morning, as my friend desperately massaged me in an effort to lessen the pain. I'd mentioned the ER as the pain wall climbed, but she tried to talk me out of it -- I know she felt, Been there, done that; let me go back to bed. I couldn't blame her. "What can they do for you at this point?" But after another hour of screaming I crawled into the car again, and off we went. There was black humor in it; as I paced with the walker, crying, the patient who was ahead of me in line said to the admissions woman, who was asking about his address, "Um, maybe you should talk to that person first."

They added a muscle relaxant to the morphine injection this time, and it was a blessing from heaven.

Through all this, I would think blankly, "Two weeks ago I was fine." "Three weeks ago I was fine." "A month ago, I was fine." How was this possible?

The hip specialist, when I finally saw him, took one look at me and said, "I've never seen a hip patient lying on their stomach. And I've never seen bursitis cause this much pain." He said that he believed the cause was actually in my lower back (which felt fine). "We'll get you an MRI. I'm betting it'll show herniated disks."

So I was scheduled for an MRI... about a week to ten days later. And here is the other great lesson I learned from my sojourn in pain country: I'd always assumed that if someone was in great pain, the wheels of the bureaucracy would turn quickly. In fact, they turn at exactly the same pace as before. You'll get an MRI in a week or so, unless, as we did, my friend called the MRI place and asked if they had any cancellations sooner. They did -- but we had to be active about it, and then beg. So, victory at getting the MRI that Friday... but then, someone has to write up the report. Heavens, you wouldn't expect that to happen on a weekend. Hopefully he'll get to it on Monday or Tuesday... if you call and push. But then you'll need another appointment with the orthopedist (this time, the spine specialist). With luck, maybe you'll get that another week or ten days after the MRI.

By then, you've heard that magical word, "Epidural." You crawl into the car to see the spine specialist, expecting that now, with the MRI information, he can perform such a procedure. But he doesn't do that; no, you need to make an appointment with the pain management specialist. By now you're a few weeks into this, and it's the first time anybody's suggested that pain management specialists exist.

"And don't think you'll get the epidural then, either," the orthopedist warned, having heard the somewhat unhinged hysterical laughter made by the two friends who'd brought me in. "That'll just be the consult." Which will be in another week to ten days. And unfortunately, nobody can call the office of a pain management specialist and ask to get you in quickly "because she's suffering"; everybody who sees him is suffering.

And so on and so on. Accompanied, of course, by the requisite bureaucratic torment beloved of my health insurer. Scramble, scramble for those referrals. The first orthopedist's referral, we found out as we were leaving, was for the brother of the doctor we saw (they share the office, and of course, the same last name). Insurance won't honor it. Call back the primary doctor and get a new one for his brother, quick, because they won't honor retroactive referrals either. Then you're returning to the same office to see the spine specialist? New referral. Pain management? "You'll need a new referral. His office won't even book you till they get it." What about the epidural? "We'll need to put in for authorization." "How long will that take?" "Sometimes two or three weeks."

Phone call after phone call. And I know from experience that my insurer will deny receiving referrals about half the time anyway. I could understand why I'd heard that the mother of a boy with a degenerative disease, who shared my insurer, was reduced to tears at least once a month simply from trying to deal with this.

And then there's the dearly won knowledge that one must ever keep track of how many pain pills you have, and whether they will get you through the weekend, or rather, whether they will get you through the next four days, as it's late on a Friday and your orthopedist won't get the message till Monday and his office is adamant that it's a 48-hour turnaround. And the many phone calls that go with this, and the constant fear that your request will be declined -- not that the doctor's office will ever call and tell you this; you'll only find out as you continuously check the pharmacy.

I told the pain management specialist that I didn't care whether the epidural was insurance-approved or not; I just wanted it, and I'd pay whatever it turned out wasn't covered. He agreed to set a date three days later. There are people in the world who can't make that kind of offer. And there are people in the world who'd lose their jobs (and possibly their apartments or their cars) if they were absent from work for a month or more. I am fortunate.

I am fortunate. I have had three epidurals, and physical therapy will soon begin. My dog was able to sit in my lap, briefly, for the first time in seven weeks. The sounds I make have dwindled to the occasional yelp. I am on the tarmac, my plane accelerating, ready to take off from the country of pain and show me the curve of the globe beneath my window. I was only a tourist after all.

Some of us live there.


Comments:


I breathe therefore I write
sandymg at 2014-07-10 02:18 (UTC) (Link)
I am sorry to hear of what you sent through. My mom has a lot of pain in her knees and I will share this with her. I am over 50 and get aches myself but nothing like you described. It's very scary. I hope very much that the doctors and therapists can help.

You are brave to share this but I think that maybe sharing can help others.
not always right, but often not wrong
ravengirl at 2014-07-10 02:34 (UTC) (Link)
I'm glad you're just a visitor to the country of Pain. I've been fortunate in that regard, too, and I hope I continue to be. What you record here about insurance and pain and fear and tears and Life being surreal and living in that box! I understand this and it maddens me that people must deal with these things regularly, while I selfishly hope I never do.
C
alessandriana at 2014-07-10 02:36 (UTC) (Link)
Yikes! I'm so sorry you've had to deal with that. Hoping it gets better soon. *hug*
Sandra
wolflady26 at 2014-07-10 02:42 (UTC) (Link)
Ugh, horrific. I'm so sorry you're going through that!
Rachel M Brown
rachelmanija at 2014-07-10 03:23 (UTC) (Link)
I'm so sorry. I spent a few years there off and on, after a car accident. It was horrible. But way after a bunch of doctors told me it would never get any better... it got way better.

Did they ever figure out what was actually wrong?
Tightrope Walker
tightropegirl at 2014-07-10 03:46 (UTC) (Link)
The MRI did show herniated disks, so we're officially attributing the pain to that. Though the hip x-ray showed deposits consistent with bursitis, arthritis, and even tendonitis... apparently it's hard to tell from an x-ray, but whatever's going on there may be a contributing factor. But physical therapy starts Friday, and I'm just glad I'm feeling better.

And glad you're feeling better, too.
aka DevilWoman, the Thrower of (plot)Bunnies
jebbypal at 2014-07-10 11:58 (UTC) (Link)
With the bursitis and arthritis possibilities, ask about a referral to a rheumatologist. While you don't want to be on it long term, a short course of steroids (prednisone) can help substantially with acute pain management and swelling associated with those plus the herniated disks

So sorry to hear your troubles and boo to your insurance. i'm used to that run around for my mom who has chronic health issues plus pain management needs but she's in the rural midwest.

Hope things resolve as fast as possible.
Tightrope Walker
tightropegirl at 2014-07-12 04:21 (UTC) (Link)
It's a good thought -- so good that I actually went on a course of prednisone while waiting for the MRI. It didn't seem to help me, but I know it does help a lot of people. Thank you.
borgmama1of5
borgmama1of5 at 2014-07-10 04:05 (UTC) (Link)
Your eloquence in describing your sojourn in the land of pain broke my heart...and yet throughout you express concern for those less able to weather the struggle than yourself.

I am sending positive energy in the hopes that good thoughts from fandom can help shorten your time there.
Oleander9999
oleander9999 at 2014-07-10 04:37 (UTC) (Link)
My sister spent all of 2013 there and, from what I could understand, only communicating from across the border with her, you describe the landscape very precisely. I have not yet experienced that level of pain (I dread that it may happen) but have had months in bed, unable to leave a small apartment (broken ankle) and I do know that feeling of looking at the alien planet. When I was finally able to be outside again, I felt like someone who'd been let out of prison and was shocked at the vividness of the outside world, its noise and speed and heartbreaking beauty. PT is a miracle (wrapped in hard work!) and I hope you will soon be feeling MUCH better and more "normal." That you were able to write this so beautifully and powerfully speaks well for your return to your home planet. And here's to that place in the country (and more novels from you, hooray!!!) Hugs and love!

p.s. So far, 2014 has been a fantastic year for my sister! She spent last year addicted to pain pills, this year she takes a minimum and is learning Hindi and kicking ass in Physical Therapy.

Edited at 2014-07-10 04:39 am (UTC)
Mayhem Parva
raincitygirl at 2014-07-10 04:43 (UTC) (Link)
Oh man, oh man, oh man! That just sucks so much. I'm glad things are a little better now, but a little better than a ten on the pain scale still sucks more than I can describe. Sending good thoughts.

Also, you're an amazingly vivid writer. You really conveyed the agony, to the point where I was having sympathy winces in my own back.
Kate Elliott
kateelliott at 2014-07-10 05:08 (UTC) (Link)
I'm so sorry. How awful.

And the way our so-called health care system grinds people down is awful too.

Hoping that you will leave the country of pain far behind.
Elizabeth Hunter
lillibet at 2014-07-10 06:33 (UTC) (Link)
I think the territory of back pain is a particular sector of that country. I dwelt there for a year, a few years back, with hip and lower back pain similar to what you've been experiencing.

For me, the most painful memory is the MRI--lying on my back for 22 minutes (how long I now know I can withstand torture) gave me nightmares for weeks afterward, even after I paid for it out-of-pocket because my insurance company never could manage to authorize it.

What has helped me--and I offer this only as another item for your bag of tricks, should you reach your wits' end and want to try something different--is an inversion table. As far as I can tell, they have not been medically evaluated. When I asked both my PT and my physiatrist about it, both said that the theory (gravitational traction to reduce the squishing of the disks) makes sense, but they couldn't recommend it professionally, which seemed about as close to "Sure, try that" as I could reasonably expect to receive. Using it 2-3 minutes per day for several weeks got me back across the border and I now use it once every couple or three weeks.

Here's an interesting thing I discovered about my body--no one else I've spoken to has found this to be the case, so if you were to happen to find it useful, I'd love to hear about it: pay attention to itches. I occasionally get a strong itch in my ankle and realized over time that it's the precursor to pain in my hip. If I make a point of shifting my posture whenever I get an itch, the itch goes away and--here's the kicker--the pain doesn't develop.

I hope I'm not being annoying with the suggestions. For me these discoveries were signposts back to the land of the painfree, so I offer them to you as a form of hope, which can be so hard to find in that place.

May your plane fly smoothly and land with grace.

Tightrope Walker
tightropegirl at 2014-07-12 04:25 (UTC) (Link)
Ah, yes, the MRI. It wasn't as bad as it might have been for me; the guy doing it saw I was hurting and told me that if I barely breathed, he thought he could get it done in 15 minutes or less. And he did!

I have a friend who uses an inversion table, and she says it helps her as well. I'm thinking seriously about it. The idea spooked me out a little at first, but I guess 2-3 minutes might be something I could handle. Thank you!
amnisias
amnisias at 2014-07-10 07:47 (UTC) (Link)
Hugs!

Love the analogies - Country of Pain & Pain is a Box. So true, harrowing to think some people live there all the time. But that description of your journey through health care is scary, it sounds like the point of the health care system in the US is to make access to health care harder, rather than easier!? As you say, many people do not have the time, energy or knowledge to badger receptionists and doctors and make stuff happen, nor the money to pay for it.

Wishing speedy recovery!
kiezh
kiezh at 2014-07-10 09:54 (UTC) (Link)
Your descriptions are very vivid and make it clear that you have indeed been to this miserable country. :( I'm glad you get to leave. (I don't mean that sarcastically at all; I am absolutely sincere. I am SO GLAD you're getting out. I'm sorry you had to visit at all.)

Chronic pain that waxes and wanes unpredictably is a weird area of the country of pain, prone to bizarre weather fluctuations and constant terror. (How bad is today going to be? Can I do the thing tomorrow, or will I have to cancel? If I push through, will I have serious cause to regret it?)

It creates a veil between you and the people who live in non-pain-countries; you can use the same words, but you can't communicate. They don't understand the language. (That 1-10 pain scale is an example. The number scale people always want a measure of intensity, which has nothing to do with how I think about pain anymore. I measure pain in terms of what it prevents me from doing, how many spoons it costs to concentrate/move/etc. From discussions with other chronic pain sufferers, I know I'm not alone in this.)
jilltanith
jilltanith at 2014-07-10 12:11 (UTC) (Link)
On a scale of one-to-ten, that sounds to me like about a three thousand. Maybe higher! Gentle ((((hugs)))), glad you have a diagnosis, and I hope the PT helps quickly!
oracne - Victoria Janssen
oracne at 2014-07-10 12:22 (UTC) (Link)
Owwwwwwwww. I am so sorry you're going through this.
cuddyclothes
cuddyclothes at 2014-07-10 13:42 (UTC) (Link)
So beautifully written and so horrifying. You've opened up the world of chronic pain to those of us who haven't been through it. Your metaphors are magical. Such a strange experience, reading something so beautiful about such a terrible situation.

As for health insurers, I've been there. So glad your plane is rolling down the tarmac! I'd write *hugs* but a)it's facile and b) it would probably hurt. ;)

Thank you for this post. I'm going to print it out to give to a friend.
rache
wickedwords at 2014-07-10 14:35 (UTC) (Link)
Our healthcare system is crap for dealing with pain. I am so sorry you went through that and so glad you are getting better!
Harald Koch
chk at 2014-07-10 15:21 (UTC) (Link)
Still loving your writing, after all these years, even if it is about something as horrifying as this!

Dealing with medical bureaucracy is always a nightmare, but I'm particularly disturbed by your first encounters. That ER doctor needs to be taken out back and worked over with a clue stick with no safe words allowed. "A hot shower will help?" Ugh.

Seriously - report them both to the appropriate oversight body. after you've recovered, of course. ;)
Hillevi
hilleviw at 2014-07-10 15:37 (UTC) (Link)
The issue of wait times is one that really disturbs me. 18 months ago I finally went to see my PCP after running low grade fevers and feeling bloated for about three months. Fortunately, I work for a health care system, and our medical plan is designed by doctors, for themselves. After giving me a preliminary dx of diverticulitis, and some flagyl, she had me head down the hall to get a CT-scan, just for verification.

There's the first thing, and the second. All I had to do is walk down the hall. Then, my plan didn't require a pre-authorization.

The third is that when I got to CT they were closing up for the day, it was 4.30 and I didn't have an appointment. But they saw my badge, and took me back for the test as a courtesy to a colleague.

At 6pm my doctor called me. It wasn't diverticulitis, it was ovarian cancer. 36 hours later I was in hospital, and two days after that, I was in surgery. My tumor was enormous, but fully contained and not metastasized, and I am now fine. My surgeon has been clear - another week and my ovary would have ruptured, and then there would have been nothing he could do but make my final days more comfortable.

A week.

Just one week to mark the difference between death and total recovery. If I'd had any lesser insurance...if I'd had to wait a week to get approval for the CT scan, and another week for an appointment....Well. I'm angry that what saved my life is a set of exceptional circumstances. Grateful, but also angry.

This system of bureaucrats second guessing physicians and deciding whether you can have an epidural or I can have a CT-scan seems mad to me.

I hope your pain management continues to improve, and I hope that in physical therapy, you will not only improve your current situation, but learn ways to prevent recurrence.

Thanks for your patience in reading what turned out to be a longer comment than I intended.
Tightrope Walker
tightropegirl at 2014-07-12 04:32 (UTC) (Link)
Yes, the wait time issue was the thing that bothered me most about all this. (Well, aside from the pain, of course.) Pain may strike as our bodies will it, but wait times are something human beings can control! So why don't we? Why can't we have a fast track for people who need it? Most of my life I haven't needed it, and I just assumed that if I did, good sense would prevail. It was a rough disillusionment.

Thank god you were able to get that diagnosis quickly. I know what you mean; it feels almost accidental that you did -- and it shouldn't be. But I'm glad you're here and alive to comment.
Hillevi
hilleviw at 2014-07-13 18:17 (UTC) (Link)
Thank you. I'm still trying to figure out whether there's some useful way to channel the energy of both my anger and my gratitude. The other issue that I get up in arms about is the way the disability system works. Okay, if you're going on maternity leave or having a planned procedure, it might make some sense. But when you are abruptly in fear for your life, or in excruciating pain, or taking narcotics which cloud your mind and kill your short-term memory, to have to navigate arcane and complex paperwork, and automated phone systems which hang up on you arbitrarily, and then wait three months for the first payment to appear...it's unacceptable. Again I was lucky - my landlords are my parents and were willing to postpone getting rent. I could so easily have been in pain and mortal fear and homeless...so many others are. It is NOT okay.
Stacey
slb44 at 2014-07-10 15:40 (UTC) (Link)
First off massive yet gentle {{{hugs}}}

I'm still stunned by this horrible journey you were forced to take. As much as our medical system in Canada has it's flaws, this makes it sound like paradise. Especially given that you also have the ability to pay out of pocket. Everyone always assumes that that makes it all better, but apparently not.

I sincerely hope that you're on your way to a full and speedy recovery.
Badger
badgermirlacca at 2014-07-10 15:50 (UTC) (Link)
oh my god.

just... oh my god.
Martha Wells
marthawells at 2014-07-10 17:56 (UTC) (Link)
Oh, god! I'm so glad you're on the tarmac. I hope the plane takes off very soon.
equesgal
equesgal at 2014-07-10 19:00 (UTC) (Link)
Good lord. I'm so glad you're feeling better. I'm waiting to get a hip replacement myself...only none of the orthopedic groups out my way take my insurance. Fortunately, my pain isn't anything near what you experienced, but I know how you feel about having to wait for different medical things to happen.
camille_is_here
camille_is_here at 2014-07-10 19:49 (UTC) (Link)
Emergency rooms in that area are notorious. Still, I am staggered at how long it took for anyone to do anything diagnostic.
Laura Shapiro
laurashapiro at 2014-07-10 23:02 (UTC) (Link)
As someone who lives there, I can only say, THANK YOU for writing and sharing this. It was a profound and visceral experience to read.

I'm sorry you're hurting, and glad it's getting better.
Tightrope Walker
tightropegirl at 2014-07-12 04:34 (UTC) (Link)
Thanks, and I'm sorry you live there. It's a country I would prefer to see without inhabitants.
Laura Shapiro
laurashapiro at 2014-07-12 14:09 (UTC) (Link)
I feel the same. Nobody deserves it.
Cherry
cherrymmm at 2014-07-11 03:13 (UTC) (Link)
Your words are so vivid I had phantom pain for you. This is such a perfect expression of the frustration of pain island, I was hoping you would let me share this with a friend of mine who shares my chronic migraine misery.

I am glad you are on the road to recovery with PT. It is hard work but well worth it as I found out after knee surgery. Be well. *hugs you gently*
Tightrope Walker
tightropegirl at 2014-07-12 04:41 (UTC) (Link)
Please feel free to share this with whomever you like. I gather you're all too familiar with the sort of things I'm talking about.

I've been having a bit of a minor relapse the last few days, but I started PT today, and just beginning it gave me a hopeful attitude.
A large duck
burger_eater at 2014-07-11 05:03 (UTC) (Link)
How terrible. I'm glad things are getting a bit better for you.
Dori
msdori at 2014-07-11 05:26 (UTC) (Link)
I don't even know what to say, except JESUS FUCK.

I'm so glad to hear things have improved, even if they're not completely better, and I will be saying prayers over here.
incandes_flower
incandes_flower at 2014-07-12 12:56 (UTC) (Link)
Thank you for this post. It so clearly demonstrates some of the emotional trauma of dealing with chronic pain. I have JRA and have had hip replacements. Thankfully, I am not always in pain, but I have had plenty of docs who treat me like a drug addict when I ask for any low level narcotic. I've begged for pain medicine from my specialist's office on a Friday knowing the weekend is coming, to be told that my doc isn't around and I should call my PCP because they know me. I had been patients at both offices for the same amount of time. I've learned to fire doctors who don't treat my pain the way it needs to be treated. I see about four different specialists on and off. I keep thinking there has to be a better way to treat the whole person. I have also faced the issues with insurance. Fortunately, the last two insurance companies I have been with have been wonderful. Although I require referrals, it just seems to go much smoother. I haven't recently had to spend an hour on the phone to get a denied service reevaluated because I knew it should be covered. I did before. But it makes me sad to think that just because I happen to have good insurance now, things are easier for me than others. The system is definitely broken. Your post illustrates that so vividly. I wish you well on your journey to recovery. May you keep those feelings of hope if you are faced with any visits back to that dreaded country.
My Hunter
meus_venator at 2014-07-13 15:50 (UTC) (Link)
I am so sorry hon. You don't know me from adam, but I was forwarded a link to your incredible write up about trying to get Jensen Ackles on your various shows and the poor luck you had. Loved your writing, so I tracked you.

The country of Pain keeps a tight grip on a lot of it's citizens. My mom is definitely in it's hold with no plans of escape any time soon. They say with cancer once you have it you don't have a life anymore, you have a disease. Well I think pain is even worse, it blots out everything.

Fingers crossed you stay far from its borders for a long time.
Jesus North
bahia at 2014-07-14 00:19 (UTC) (Link)
wow this sounds like such a horrible thing to go through and i really hope it will soon all be behind you.
Quiet desperation
lexin at 2014-07-16 17:58 (UTC) (Link)
I was forwarded a link to this by a friend, and thank you for sharing it. I'm fortunate in that I don't have this level of pain, but what I do have is random hallucinations and delusions caused by bipolar disorder. I get them particularly when I'm under stress, but at other times, too.

I live in the UK, and even here accessing the help you need is often not straightforward. Go to your doctor, ask for assistance, then wait six or ten weeks for it. I went to my doctor with a particularly distressing set of mental symptoms in March. I've been assessed - in April - as needing urgent help, which has not yet been allocated to me. It's now July. Thank goodness I wasn't suicidal!

Mental health shares with pain management the stigma of being the Cinderella of the NHS. Not much interest in either.
Charlotte
dharkapparition at 2014-08-19 19:10 (UTC) (Link)
Totally late to this game. My FiL had one of those moments. he was fine and then his wife is helping him crawl into the back seat 'doggy style' to the ER. he was rushed through and ended up having surgery. So sorry to hear about your pain. Chronic pain is so debilitating and when you have to wade through red tape at a time when you can barely breathe is excruciating. I've had my own, but thankfully was able to manage it before it got disabling. My PC and Chiro are both made of awesome. Good to hear you are improving!
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