Friday, November 12, 2010

My ticket out of 'Pain World'

I have heard of this strange and wondrous place filled with colour, motion, and all sorts of complex variations: I think they call it, ‘outside’. I want to visit there sometime soon!

I have been offline, working through some drug reactions of my new medications. One is for Edema and the other for pain. It seems I kinda have a GP, but like a long distance love affair, we can only see each other for short periods every couple weeks. And we both have several years to catch up on. I thought if he didn’t drop me by the third meeting, then, next meeting, I would finally stop feeling ill and not sleeping the night before going to see him (is that 'love' or 'trauma triggers'?)

I played it cool and waited at least sixty seconds maybe even seventy before asking, “So, you’ve read my file, do you think I’m a nut case?”

I like to start subtle and then slowly work towards what I want to know.

He had to leave early, and we weren’t really understanding each other as he was asking about ‘Why not see this person?” Because many doctors have done the ‘its your fault’ or ‘I can’t do anything’ route I thought he was thinking I had the disease that person specialized in. But instead, he had specialist who didn’t seem to have much concrete info, and if a name showed up in the file, he wanted to know if we had gone and where the report was. Locally he is pretty hooked up, but also realizes that there are few doctors and so his questions were about ‘Where can I refer you to get some treatment instead of being handed off?”

Since I had never had a GP who thought that way, I thought we were back at ‘I need to find the exact disease or I don’t treat at all’ that so many GP’s (about 15) have had. That’s even what they say when they turn me down with “I haven’t treated this disease.”

So I asked, “Do you think I have a disease?” (I know, I am there with $30,000 in medical equipment because I have odd hobbies?)

Yes. Later he said, “You have a rare disease so it may be a problem to find someone.” The impression was that he wanted to find someone to oversee as a specialist, to administer treatment, not test. I thought we wanted proof, so I talked science. But no, he didn’t want to talk about nerve conduction comparisons, or blood tests, but about who would give treatment. I though the ‘dancing doctor’ we saw in the ER the night I had the bad seizure cycle might. He knew him, he said he will refer me, even though the neurologist is retired.

He wanted to know the issues. Was the pain control enough? I had the patch for two weeks and it wasn’t enough, so we went to two. That was better but not enough. So now I am three of the three day patches of Fentynal. Linda explained how two patches weren’t enough. I was saying it was a LOT better, “I don’t wake up with my teeth clenched, and have them clenched all day, I don’t have to do this…” and showed him the hunched over position, fists balled and shaking a little that I can be in for up to two hours. When I talk he looked at me, and smiled a little about the teeth clenching, and nodded.

He listened to Linda and I for a couple minutes, believed what we said and increased the dose of a regulated narcotic.

He didn’t: Turn to Linda to ask if I was telling the truth (most specialist and doctors), say that maybe I should see a pain specialist (in nine months), nod and do nothing, ask me what illegal drugs I take (most GP’s I’ve had), give me an HIV and Hep-C test (most GP’s, sometimes monthly). He believed. He got it.

Pain makes the world into 'Pain World' which looks like a very different place. In pain world having fishing hooks dug into the bone, spikes and barbed wire turned inward are just part of breathing: having someone put a machete into your spine or spears in your joints simply means it is afternoon. He understood, better than I, how much I needed out of 'Pain World'.

I think that he works almost exclusively with palliative patients helps him understand what pain can do. He never saw me or treated me as an addict or having a mental problem. I had physical problems and he was going to help fix those, a little at a time while he arranged for treatment and assessment of my condition to improve quality of life and prolong life. His attitude seems to be: Okay, you're ill,really ill, so what do we do to improve your life?

He’s seen the results and he gets that other specialist wouldn’t have experience with it, and nodded when we told him other GP’s said, “I just don’t know what to do.” And dropped me as a patient. He said that I have a very rare disease and we have to hope there is someone who can help. He said that it may come down to the Mayo Clinic. He was serious. I said, “I don’t think that will be funded by BC medical.” He knows Linda is unemployed and he is going to try to get some of our pain pills under ‘Pharmacare’ but said, with the weary voice of someone who had done it far too many times, “I send it in, they send it back, it takes hours, but yes, we have to try.” A Doctor who was leaving us to go do a house call, who cares.

I have some renewals, new patches and a new medication which is making me dizzy and nauseous, which keeps me staying still or in bed a bit more. Over time, it is meant to take off the edema. He didn’t question, he just wrote the prescription. As Linda said later, “He works with terminal patients…he’s seen lots of Edema.”

Plus, with my new found ‘less pain’ I have been sleeping for the first time in a long time, right through the night. First eight hour sleep in years maybe, not woken by the pain that brings me to semi-consciousness, then full consciousness at least three times a night. The down side is the ‘patch’ is different for each person and mine seems to run out on day three (when I DID wake this morning with my teeth clenched). I think having such a high resting heart rate (now usually around 100-105 beats per minute) might be accelerating the absorbing of the pain medication.

Emotionally, I am still scared: can’t quite let myself hope entirely, commit emotionally, so I am stuck waiting. Yes, he has done more to improve my life in six weeks than all the doctors in the last two years. But, I am wanting to believe in him, awaiting some sort of ‘normal’ where I just go see him on routine visits and refills, and I get treatment and we have some sort of progression evaluation. But I’ve been dropped so often, after believing in so many, it is hard to totally commit (“Next time,” I tell myself, “If he talks about longer term treatment plans then ‘next time’ I will start telling people I have a GP again.”)

Also with the decreased pain, I have been pushing myself, and did that too much over the weekend, stealing sleep and working hard, using the pain free state to push on until my body just collapsed. When that is how I end up taking my nap three days in a row, I think, “Maybe I should stick to my schedule instead….”


Baba Yaga said...

for having a GP; and thrice three times hooray for having one who understands pain, and thinks palliation important. (& sleep! One forgets over long times without good sleep what a vast difference it makes.)

Inevitably he'll have to be trained to you, but if he's willing to be trained, and it does sound like it, that's viable. That said, I wouldn't be trusting in that either, in your shoes. I've had a reliable GP for several years now, but I still don't trust that this won't be the appointment where he sees me as a hysteric to be fobbed off.

Understand how pain relief leads to overdoing it. I know calibrating's difficult, but it seems not optional, if one wants to make the most of one'a ability to live. Damn' nuisance, really.

Laura said...

He said it "You're ill." I think he will do well by you Beth. He wants to improve the quality of your life as well as quanity of it also. That is someone who is going to go the long haul with you.

So happy to hear that you are not living in pain world anymore. But pushing it can have it's own hazards. I know how important it is for you to live in the time that you don't have pain but try and take it easy so that you don't collapse.

All in all it sounds like good news. I am so glad that now you can get some quality sleep too. Too little sleep doesn't help much when it comes to pain and other contributing factors.

Cheers to the patch!

Lorna, Bob and Liam said...

Oh, Elizabeth, this continues to be so heartening! A doctor who is listening AND treating, pain relief, finally some sleep... just... yay.

I know about the overdoing it thing, a little, a) it's such a frickin' relief to be able to do more, and b) the feeling that you must do it all NOW, in case you can't later... yes. But please, don't undo all the good that's being done by overshooting. *sigh* Easier said than done, I know.

Hugs to you and Linda!

JaneB said...

Yay for some sort of plan! And for sleep... sleep is a much underrated pleasure and I'm sure you and Linda will enjoy indulging...

wendryn said...

Wow - a GP, pain relief, and sleep! I'm amazed! I hope it continues!

Here's hoping that this one lasts and that you do get some relief.


cheryl g said...

So far I am feeling hopeful about the new GP. The fact that he is addressing issues like adequate pain control and the edema I am looking at as good signs. It indicates that he sees YOU and not just the disease and he cares about improving your quality of life.

I like the picture you used to illustrate “Pain World”. It really captures what “Pain World” is like.

I can understand being scared and not ready to fully trust in this GP. I am feeling cautious too but for the first time in a long time I feel cautiously optimistic about the care you are receiving.

Please try to stick to your schedule and not over do it. It is easy to over do when the pain eases but not good for you in the long run.

rachelcreative said...

A ray of hope :)

My new medication gives me a little more energy, makes my brain a bit sharper and helps me to recover from exertions - but it's taken a while to adjust to this new found relief. So I wouldn't be hard on yourself for maximising your pain free moments and maybe pushing too far. It must be so exciting to feel that relief that you want to make the most while you can.

Hopefully long may this relief continue and make this your new routine.

PS: There's a letter & gift on it's way to you.

The Goldfish said...

I'm so pleased for you Elizabeth, both that you have this essential ally and a little relief - that is such excellent news, it has made my day! :-)

Raccoon said...

Crossing fingers (figuratively speaking)!

Sleep is a good thing. Sleep without pain (well, not much) is an even better thing.

Maybe this guy will let me believe in the Canadian healthcare system again?

SharonMV said...

Dear Beth,
I am so happy & relieved that at last you have a doctor listening to you and trying to take care of you. I know it's hard to trust and hope, but it does sound like you got a good one.

I'm applying to go to the NIH in Bethesda as they have a PID (primary immune deficiency) clinic. If I'm accepted they will also have docs from rheumatology, endocrinology, etc take part also.And now neurology as I probably have Myasthenia Gravis. I'm wondering if you could go there as you still have a US citizenship. There is no charge for all the medical stuff. Transportation costs are payed by the patient.

I'll let you know if I can find anything on the NIH website for you.

I am so happy that you are getting some relief from the pain and more sleep.

Love, Sharon

Olivia said...

I am crossing my fingers that you can trust this GP. And I am so glad he has done so much for you thus far.

tornwordo said...

It's about time you got some good news. I hope it sticks!

Lene Andersen said...

you get giddy with the ability to do things again, don't you?

I just want to kiss that doctor. Next time you see him, tell him that everyone who loves you also love him.

Shea said...

God Bless and hugs

Kate J said...

Wonderful to read that you have a GP, and one who listens and is doing something practical to help. It seems to unjust - you really should have had this guy before!
I do hope this one sticks with you and continues to be of help in improving your quality of life and relieving your pain.
I don't understand the Canadian healthcare system, though. For the info of your Canadian and American readers: with the UK National Health Service, if a GP prescribes a particular medication then you get it with no charge (or in England only a standard charge of a few £ - no charge for unemployed, retired etc.) Here in Wales there's no charge at all.
Love & peace

SharonMV said...

Dear Beth,
I'm so glad that this doctor is paying attention to you & taking care of you. So happy that you are getting more pain relief & better sleep.


Anonymous said...

hello there thanks for your grat post, as usual ((o:

mental mosaic said...

Hooray for sleep and finding a doctor who listens. May these trends continue! :)


Elizabeth McClung said...

Thank you very much for all the good wishes. I didn't realize how much I needed to recuperate, it means I can't doing 110% every single minute - ah, how vexing. And Linda requires that I SLEEP too - bah!

Seriously, I have been ill, or seriously ill, and thank you for your patience in letting me recover (and send off 39 postcards!).

Neil said...

All fingers crossed, and prayers sent, that this GP will be The One.

I understand that trust is not easy after so many doctors have dropped you. But this one sounds, so far, as if he believes you are a real person.
That's a very good thing!

Love and zen hugs,