On Grieving: Ignore Other People’s Timetables

“The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same, nor would you want to.”

― Elizabeth Kubler-Ross and John Kessler

I had a friend* who once asked me about grieving, when she would be “done with it”, so she could “get back to her life”. It was difficult to explain to her that she might never be over it, and there is no set schedule for grief, neither controllable interms of the source, or how you deal with it. How you think you ought to be able to deal with it - i.e. how fast you think you should get over it – very often has no bearing in what actually happens. Trying to control it often makes the process of grieving that much more painful, because trying to squash it down into a little box hurts way worse.

People who insist that you need to “get over it”, in my experience, are telling you that your grief is somehow inconvenient for them.

IGNORE THEM. 

 

Daily Panic Attacks – I’m Not Nuts: Hurray!

Yesterday, I went to the out-of-hours walk-in clinic with our dear cleaning lady in the throes of my third or fourth morning in a daily panic attack. I was convinced I was going completely bonkers, my brain was delighting in torturing me, and there was no way out of this hell.

But, as it turns out, I’m not nuts.

It’s just that with some antidepressants like the one I’m on, you feel worse before you feel better (I’ve been on it for a week and they take about a month to get beneficial results). I asked for something to curb the panic attacks so I have a chance at functioning, so got permission to take Diazepam 3 times a day.

Going to see the doctor on Monday.

Yesterday, after regularly scheduled doses of Diazepam, I did not, for the first time in a long time, feel like the lowest level of prehistoric frog shit. I even managed to knit a little on the Seaspray Shawl! I hope I can do some more of that today.

Baby steps, man. Baby steps.

Medical Update: June 2012

A little about my medical situation…

My doctor (GP) OKed me coming off morphine (last dose was yesterday, 19 June) because we both feel they were making my headaches (medication-resistant migraines) much worse. The headaches have gotten more frequent, not unexpectedly, and much more severe since coming off morphine.

Yesterday, I had three separate migraines in one day.

Three. 

Then I couldn’t sleep for most of the night until I knocked myself out with Tramadol, Paracetamol and Gravol. 

…when a regular facepalm just doesn’t cut it.

I’ve started a new migraine med (one that I have been on before with my previous neurologist, and that worked well) – Dosulepin. I see the new neurologist on June 26, and we figured since it takes at least a month to start working (same family as amitriptyline, and he’d likely want me back on it), we’d get a start on it.

I have also recently been diagnosed with polycystic ovaries (PCOS), which we’re treating and trying to get my reproductive cycle back on track. PCOS hormone treatment is proceeding on schedule, so we’re just waiting to see if I get a period in a few days, and then I go on Metformin. (“Bleed, dammit!”)

Here’s the pain scale I use; I’m rarely below a 7 these days.

Article: “How Doctors Die” – Thoughts on End-of-Life Care

I came across this article about end of life care…from the perspective of a doctor.

This could so easily become a rallying cry against doctors and “the medical establishment”. But I’ll try not to let it. I’m not going to give you platitudes about “dying with dignity” because I’m not certain there is such a thing.

Pain control isn’t perfect. You seem to have few choices:

-you’re unconscious from medication,

-you’re more lucid, but in agony,

-or you’re somewhere in between and unable to be awake enough to enjoy the useful and productive time you have with your friends and family even though your pain may, for the moment or a few hours, be under control (Hey, I can think straight! How much can I get done before this wears off! Should I work or play?)

You start measuring time by “when can I have my next dose of painkiller?”

The excerpt from this article speaks for itself:

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

One of the most basic human rights is, all too often, staved off by medicine: the right to die. Hopefully this article makes you think about some of the issues you may face if you’re ever diagnosed with a terminal illness.

New Diagnosis: Costochondritis

I’ve just been diagnosed with (tentatively) costocchondritis (inflammation of the cartilage in the ribcage). I’ve had bad rib pain for months and finally got up the courage to mention it to the doctor yesterday. When you have as many issues as I do, rib pain always seemed to get pushed to the back burner, but it’s been worse lately and I finally had enough.

I’ve already been taking ibuprofen for my leg inflammation, and it’s the same treatment for the ribs, plus heat packs (which I already use).

So it’s a little upsetting because there’s not much else we can do.

GP wil be doing a referral to a neurologist, after she reviews the notes from the last guy I saw in Glasgow. She needs to see all the meds we tried (in case I can;t remember one), and then we can make a plan what to try next.

My body’s just always falling apart! LOL

On “Transcending Pain”

I’m a chronic pain patient on morphine. (Note: As of 2013, I am no longer on opiates, but every day I wish I could have something, just a little, to take the edge off.) 

It amuses me when healthy people ascribe romantic ideas or evaluations of the experience of pain, especially chronic or severe pain the likes of which most of them have not experienced.

More than once, I’ve been told by different healthy people how inspiring I am, or how I rise above the pain to knit, study or just be a functional adult in my normal life. I’m not the first, nor the last, disabled woman to have this revelation (but this is an excellent post by the Disabled Feminist that reinforces my thesis).

On some level, I realize that most of them only mean well, but still, those types of people make me want to crush their larynxes with my boot.

They don’t usually see me, or other pain patients (such as my husband and sister who both have fibromyalgia), on the really bad days, because on those days, we’re not well enough to grace them with our magical, inspiring presence.

I’m betting that the screaming, throwing up and moaning from pain is sooo not in their idea of the romantic.

If, by the end of reading this post, you still think I and other disabled people are inspiring, please check out another post of mine, and a different post by the same blogger, Disabled Feminist.

But I hope, instead, that a lightning bolt of reality has benevolently struck you.

 

ICP Monitoring: What Happened, the Results, and What We are Doing Next

I got home from the hospital on 22 February. This blog post is intended to explain what happened, the results (and what they mean), and what we are going to do next in dealing with my severe chronic headaches.

I have to assume that my readers do not know all the ins and outs of neurosurgical treatments and diagnostic tests, so I’ve tried to write this post in such a way as to be as clear as possible. When you are a neuro patient as long as I have been (my entire life), you get used to talking in different ways depending on who you’re talking with. I’m used to talking most frequently to doctors, so if what I say confuses you or is too technical, let me know and I can try and boil it down.

As always, please write to me if you have any more questions, or leave a comment at the bottom of the post.

The Recap:

I had elective intracranial pressure monitoring done from 17 February-22 February 2012, to rule out whether or not my shunt or hydrocephalus is responsible for my chronic severe daily headaches. We knew going into it that there was a possibility of the hydrocephalus or shunt being completely uninvolved in the headaches, and this test was the way to find that out.

In my case, there are two outcomes to this procedure:

1) It shows that there is something abnormal about my ICP, which could account for the headaches, in whole or in part.

2) It shows that my ICP is within normal range, and is therefore not a factor in what’s causing the headaches.

What we found out is the second point: my ICP is within normal ranges. 

ICP monitoring is not a treatment; it is a diagnostic test only. My headache levels and frequency remained the same in hospital as they have been for the past few years. We (DH and my other family members who are intimately familiar with my medical history) are not surprised by this because we were aware that ICP monitoring is not a treatment in the sense that it, by itself, would have any effect whatsoever on the headaches. So, at the end of it, we well expected me to be feeling pretty much the same (shitty) as I did before having the monitoring done.

 

What Happened:

I was hooked up to it for 48 hours initially (which is the standard amount of time for continuous monitoring), and when my neurosurgeon (“consultant” in UK English, and “attending” in American English) came in on Monday morning (21 February), he wanted me to have the monitor on for an additional 24 hours. At the time he said this, he didn’t explain things further, and I was happy to stay in for another day (though not ecstatic about it) because I was able to get him to explain why he wanted to extend my length of monitoring. He wanted more data: in a sense, he wanted a bigger sample size of the way my ICP behaves over time.

If you know anything about statistics like I do, having a larger sample size of the data you want to collect is, most of the time, a good thing. It means that the neurosurgeon has more information to work with. So, I could well appreciate the need for more data. My case is complicated, and the more information we have, the better the chances of understanding what is going on.

The Results: 

My ICP is in the range of normal. This means that it is not causing my headaches. They also checked everything else:

-I’m not overdraining, which means that
-The shunt is still tied off, as it should be
-My ventricles are a decent, normal size, and are not appearing to be slit ventricles
-There is no evidence that my hydrocephalus is “active”; that means that the ventricles are not enlarged
-There are no leaks of cerebrospinal fluid (CSF)

I asked the neurosurgeon registrar to explain how exactly they know that it’s not my ICP that is responsible.

If I had either low or high ICP, they would have seen a longer run in the data of numbers being closer together, during certain activities like sitting up, lying flat, coughing, straining, etc. For example, my pressure, if it were low, could remain at -1 for 6-8 hours. It didn;t show that. My data shows a mix of different numbers all over the map, but nothing that is particularly high enough or low enough, for a long enough time, to make them pin down the ICP as a cause.

What We are Doing Next:

The neurosurgeon has referred me to:

-Neurology unit, where presumably we will continue to investigate what kind of headaches these may be. I have also been referred to

-The pain unit.

For now, I’m under orders to stay on my current medications, which include sustained release morphine pills (maintenance), Tramadol and Gravol, with Diazepam for sleep (breakthrough medications).    However, since the hospital doesn’t dispense Tramadol, they gave me Oramorph for breakthrough pain while I was there.

Nurse: “Would you like some Oramorph?”

Me: “Hell yes!!!”

It worked much, much better than Tramadol for breakthrough pain, and so when I see my GP on Tuesday, we’ll be asking her to put me on Oramorph oral solution, instead of the Tramadol. For some reason, hospital staff are much less stingy than GPs with regard to prescribing opiates that have a chance of working.

...Or else it gets the hose again.

It tastes like crap, but Oramorph worked very well.

 

The State of the Union is that my headaches are exactly the same as they were before ICP monitoring. This is an expected scenario because by itself, monitoring doesn’t treat anything (unless it’s the type of patient who requires the CSF to be drained, and then they put in a special type of monitor which provides for draining off the excess CSF at the same time as monitoring the pressure). This is the type of ICP monitoring that my friend, Alexa, had.

The type of monitor I was on was the least-invasive type, did not require CSF to be drained, and they didn’t need to shave off any of my hair (for which I am grateful).

The reason we’re just in a waiting pattern right now is because a GP is not qualified to try out any migraine or other headache medications on me. That’s what neurologists are for. So, when I see the GP on Tuesday, they will not be permitted to change any of my medications except to replace my Tramadol with Oramorph.

"I'm sorry, but we are off the Bullshit Painkillers That Aren't Going to Work menu, now."

Shit My Neurosurgeons Have Said: “Choke Yourself!” (NSFW)

I’ll be going into hospital this Friday to have Intracranial Pressure monitoring done. It’s scaring me, so I went on Facebook looking for hugs. Or giggles.

In a Facebook group for low ICP and CSF Leaks, someone started a humour thread:

“The things consultants said that made you laugh/speechless?”

I’ve got a few of those!

My Canadian neurosurgeon did a shunt tap and measured my intracranial pressure with a needle and manometer in 2007: “I don’t think I’ve ever heard you say, FUCK! before.”

Another one from my Canadian neurosurgeon, on asking me to perform a Valsalva maneuver: “Choke yourself!”

(Shades of Full Metal Jacket, anyone? NSFW.)

I looked at him like he was nuts, and asked if he was sure he wanted me to do that. He did indeed, but he actually meant, “press down on the jugular/carotid on both sides”: it temporarily relieves my symptoms, which suggests overdrainage.

Some really dumb people have asked if I’m an autoerotic asphyxiator, and of course I’m not. I don’t touch my windpipe, impede my breathing, or in any way derive sexual pleasure from this. It’s a simple Valsalva maneuver – that’s all.  People have sick minds.

Commander Data to the Bridge, Please!

A public service announcement:

Beware, peeps: my severe pain, lack of good sleep, and meds (morphine, Tramadol, etc) can make me very blunt at times.

I’ve been kicked out of closed groups on FB and message boards even when I’ve explained the medicine, neurosurgery and neurology behind it many, many times. Like I said to a spoonie Facebook friend – some people just. Don’t. Get it. – especially if they have never had to deal with chronic pain. 

1) I have a big problem when people are being willfully, continually ignorant or stupid – about anything – and I have no problem telling them straight to their faces.

2) I can’t interpret sarcasm AT ALL, either. On the other hand, I have a quirky sense of humour and love giving hugs and cuddles, so hopefully that balances things out.

“I just…love scanning for life-forms!”

My DH calls me “Data”, after the Star Trek Next Generation character, because:

3) I really have a tough time interpreting emotions right now. 

I think a lot of the reason behind it is that sarcasm simply cannot be adequately communicated in a print-only format. So much of human emotion is conveyed by facial expression and tone of voice – and that’s something Facebook cannot provide.

4) I tend to ask people directly if they’re being sarcastic – it’s the only way I can know for sure.

We now return you to your regularly scheduled programming.

Sidenote: I’m composing lyrics based on the “Life Forms” song, set to the music of Andrew Lloyd Webber’s Music of the Night from The Phantom of the Opera

And I just have to include this. This post would not be complete without it.

Update!

I’ve been off all narcotics since January 2013, which has made things a little easier. However, I still experience daily severe migraines, so I am still Commander Data.

“Holocaust Memorial Day – Black Triangle” by BendyGirl

http://benefitscroungingscum.blogspot.com/2012/01/world-holocaust-memorial-day-black.html

Today, Holocaust Memorial Day, this article by BendyGirl highlights something very important for me: that disabled people were the first to be targeted by the Nazis. Her eloquence is superior to mine today, but I will try and give a brief summary, and you can click on the link above to read the article.

The “black triangle” mentioned in the title refers to the concentration camp badges that the Nazis designed. Disabled people and “asocials” wore it.

Different colours designated the prisoners in whatever way Hitler’s regime had marked them as “undesirable”. The large variety of different combinations and colours boggles the mind – a testament to the Nazis almost compulsive need to label everyone and to keep records of the atrocities they committed.

Yellow Star/Yellow Triangle: Jews – this is perhaps the most familiar one. The yellow star was created by superimposing one triangle over an inverted one.

Pink Triangle: Homosexuals – the movie Bent (with Clive Owen and Lothaire Bluteau) tells the story of a gay man’s ordeal at the hands of the Nazis, and of how he falls in love with another prisoner when he’s thrown into Dachau concentration camp. (“Bent” was a slang term for gay people.) He denies his sexuality by identifying himself as a Jew and wearing the yellow star instead of the pink triangle, believing it will make it possible that he might survive longer. Horst, the prisoner he falls in love with, wears his pink triangle with pride. The ending ripped my heart out.

Dachau is also one of the camps that had “the most elaborate system” of branding the prisoners with these labels.

Black Triangle: “Asocials” – this broad category included the disabled, lesbians, and the “work shy”.

If you were unlucky enough to be in more than one category, one triangle would be superimposed over another. More information about them can be found here.

Although today, the disabled are not forced to wear identification badges, we’re still singled out and cannot be invisible much of the time due to the nature of our individual disabilities. We’re immediately identifiable to the naked eye if we limp, use a cane or wheelchair. For those of us with “invisible disabilities”, it’s more difficult because we’re in some way expected to “prove” that we are disabled because there may not be readily identifiable characteristics to our disabilities.

I was at the doctor’s yesterday, and I was finally put on extended-release morphine for my severe, chronic headaches that are caused (probably) by low intracranial pressure secondary to hydrocephalus. I was very nauseated as I walked into the consultation room with my husband, and as we entered I told the doctor this because I wanted to know where I should throw up if I needed to: in the sink or in the garbage bin. I’d had a very severe headache for most of the morning that continued through the appointment.

After my husband’s appointment, I went next.

As I sat down next to her desk, the doctor’s first words were, “Well, you look healthy.”

Disabled people are not invisible even if you can’t see their pain.

Some days, I wish that I could be.

As BendyGirl ends her post, so will I:

To mark World Holocaust Day, please remember,

“First they came for the disabled people
And I did not speak out because I was not disabled.”