Pain Scale Revised

A Follower of this (b)log has suggested the following changes to the Pain Scale:

11 = Homicidal
12 = Suicidal

Dr. Other Guy

Got in to see the doctor today and he ordered an MRI. Didn't get much more than that done. It felt like a waste of time because I could have told him I needed an MRI a month ago. And I could have done that by phone.

He also made some recommendations for additional pain medications which he can't actually prescribe. No, he can only add his notes to the file. I have to talk to my regular doctor for that. So, I called her office and we have an appointment for a telephone consultation tomorrow afternoon. I don't know what combination of drugs he recommended but it'll be some cocktail!

So, no. No answers. He said the symptoms don't really point to any easy diagnosis. Many of the symptoms point to a pinched nerve, however if that's what it really is the symptoms would be more like this. The symptoms could be indicative of a muscle problem, but then the symptoms would look a little more like that.

The MRI isn't a very good diagnostic tool for fishing expeditions. It can be helpful if it clearly points to something or clearly eliminates something else. But two identical MRI's can produce completely different (or no) symptoms in different patients. So any results from the MRI has to be somewhat obvious to be of any use. If not, the next step would be additional testing of some kind.

The MRI is scheduled for Wednesday. At least I didn't have to wait another month for that! They told me on the phone I'll be able to go in feet first so it shouldn't be too bad. They also told me I should wear something comfortable - and nothing with metal - so I'm planning on wearing my pajamas and my slippers that look like little rubber duckies. :-)

Tired

I'm just tired today. Pain level has reached 8.5-9 today. I'm just tired of it hurting. Hopefully, I'll get some answers tomorrow.

I don't think my meds are working.

Bo Derek's a 10?

I am often asked how my pain is on a scale of 1 to 10. If I say "12," it seems I am written off as some sort of crazy person. But this would be the answer I'd give when I tried to explain how painful it is to get out of bed.

It's obvious I'm exaggerating because 10 is supposed to be the worst pain ever on the scale. But who's ever had the worst pain ever? What's mine is not yours. What I'm trying to do, though, is communicate that I'm in pain to someone who I imagine doesn't hear me.

The very worst pain I've ever had is a migraine headache. It only lasts a few short hours compared to the two months I've had my current pain. I've had some very bad headaches in my 46 years but only two where I prayed for Death to take me. Death would have been better than enduring the pain. (I'm not kidding either. No exaggeration here.)

If I had that pain now - for eight weeks - I'd be dead. I would either have committed suicide, gone insane, or possible made it to an Emergency Room where I would be relieved of consciousness by morphine drip.

So, no, my pain level isn't 12. It isn't even 10. That being said, the worst it could be now is 9 which on the Do Re Mi Pain Scale is "I Cry Out In Pain." (I hit 10 twice when I started taking Percocet but I think that was a reaction to the drug, not the pain. I didn't actually pass out; I got down on the floor before I lost consciousness.)

8 or 9 was generally where I started my day. I would take one or two Vicodin and walk around the kitchen - sometimes moaning - until the drugs started taking effect about an hour later.

I just switched to Percocet a week ago and that first pill of the day would make me nearly pass out. So now I don't get out of bed - it's safer that way. I eat a breakfast bar in bed, take my meds in bed, and then wait 30-40 minutes before I even get up. I haven't felt faint since. I actually take two so you would think I'd be pretty high by the time I get out of bed. (My Facebook entries from earlier today seem to support this!) But even after two Percocet my pain level is 6-8 and it stays in that range until I can take two more about five hours later. Then it levels off to 4-6.

I go walking every day and if I do this in the afternoon, my pain drops to maybe 1-3.

About 5pm the pain starts to increase a little. By then my midday drugs start to wear off, I've been on my feet (avoiding sitting), and I'm starting to get tired. I'll make dinner, watch a little TV, and the sitting will agitate me. The pain level gets to about 3-5 by the time I go to bed.

Getting back in bed is not as difficult as it used to be. (It used be almost as difficult to get in as get out.) Within 30-60 minutes the pain level drops to 0-1 where I can sleep.

Whether Bo Derek is a 10 or not is anyone's opinion. I just know I'm not - at least not right now.

Do Re Mi Fa So La Ti Do

I was faxed some forms to fill out in anticipation of my doctor's appointment on Monday and it contained a scale that I am already finding useful. It's a pain scale which allows me to describe my level of pain at any given time. I made a copy for me to carry around in my pocket because I am often asked to describe my pain on a scale of 1 to 10 but my scale is likely different from the person who is asking so this will allow me to be more consistent with my answers.

It will also allow me to keep track of my pain. I've been tracking my drug intake since they were first prescribed on 10/17/09 but not my pain levels. (As of this moment, I've taken 214 pills of one variety or another.) I've only kept sporadic notes about the treatment I've received so far and the activities I've undertaken or avoided.

So today I got a spiral notebook and I'm keeping track of everything. I left some blank pages so I can go back and fill in as much as I can of what's happened since this began, as well as some relevant history. (I've been having acute back issues for almost two years - which, I guess, now qualifies as chronic.)

I suppose my doctors never anticipated I would be having pain this long. I know I didn't. But I think this scale - or something like it - should be "standard" when a patient calls or comes in complaining of pain. It would provide for much clearer communication upon which all health care is based.

Keeping a log should also be standard advice. I'm not just seeing one doctor, I'm seeing several. In a perfect world, my log would be online, secure, and available for viewing by any doctor I see. Even on paper, it gives the patient the ability to monitor progress and setbacks somewhat more objectively and, again, allows for clearer communication between doctor and patient. This seems like a "Do!" concept.

Another item which should be standard for patients complaining of pain, is a list of questions regarding activities that are limited by the patient's pain. This seems obvious to me but I wasn't given such a questionnaire until November 20th (after almost seven weeks of suffering) by a chiropractor from whom I have been seeking treatment.

I have to mention, this chiropractor has given me the most thorough exam to date with regard to testing reflexes and range of motion, as well as this questionnaire regarding activities which may be limited by pain. I am most grateful for his careful attention. He gave me his cell phone number and he called me over the weekend after my first treatment to see how I was doing. I understand that compared to the hospital with which my health insurance is associated he is just a little guy. And my doctor, as part of this huge organization, doesn't have the time to contact her patients for follow up. But I really appreciated his attention.

Anyway, my point with the questionnaire is that such a tool would offer another means of clearer communication between patient and doctor.

It probably would have been a good idea for my doctor to do a more thorough exam, come to think of it. She interviewed me, moved my leg around some, and judged my hip pain to be related to my back, not my hip. (This will be subject of a different entry - the name back(b)log is something of a misnomer as I don't actually have back pain.)

Finally, here's the pain scale:

0 = No pain
1 = Some pain but OK
2 = Mild pain worse
3 = Annoying pain
4 = Distracting pain
5 = Pain can't be ignored for long
6 = Pain can't be ignored at all
7 = It's hard to think and sleep
8 = Pain limits activity; nausea
9 = I cry out in pain
10 = Passed out

I'll write some more later about where I've been hanging out on this scale. I'm just thankful for the day, the ability to get out of bed, and (relatively speaking) my health.

Gratitude

It seems appropriate to mention the practice of "practicing gratitude." It's not something I do on a regular basis. It's like the practice of prayer, I suppose. Also, something I don't do. (Used to. Gave it up. Wasn't struck by lightning. Interestingly, I also reduced expectations, and thus disappointment.)

That being said, I've been practicing gratitude on my last few walks and it feels pretty good. It probably has to do with the endorphins and the fact it hasn't been raining the last couple of days. But it probably has more to do with the fact that I'm higher than a kite when I go out. (Thank you, Percocet.)

I've been talking to angels and I'm pretty sure they've been talking back....

Actually, I have a friend that believes in angels and she said I should talk to them and ask them for what I want. I should be specific. Don't just ask for answers (relating to my pain issues) but ask for a specific answer such as the "traction treatment will work in six sessions and the pain is not related to tumors or cancer," for example.

So I tried it and I can't say that it worked exactly but I am having a really good week, relatively speaking, and it feels good.

I can't say I believe in angels (although when one talks to them, one must be grateful to them when they provide - so thank you if you're out there) but I do believe in feeling good. It sure does feel better than feeling bad. Pity parties are not fun. Besides, no one shows up to them except me so it gets kind of lonely.

I've lost touch with my spiritual side over the last many years. I don't think I'm undergoing some sort of metamorphosis, or rebirth, or anything like that. But it does feel good to think about something (or someone) other than myself.

A lot of people think attitude and spirituality have a lot to do with recovery. They're probably right. I can't do this all by myself. Besides, it's not all about me anyway. That's easy to forget when one is crying because the pain is so bad. Conversely, the concept is easy to remember when one is high.

Well, I'm high right now so I feel good. And for that, and many, many, many other reasons, I feel grateful.

How Quickly Things Change

I spoke to my doctor today and she said the doctor I'm waiting four weeks for is the wrong guy! I really need to be with this Other Guy. So, she sent a referral for the Other Guy and the whole process seemingly started all over again.

Dr. Other Guy's office called and said they could get me in on December 29th - and I'm thinking "Can I get credit for time served? I've already been waiting for a week and a half."

All of a sudden, while we were on the phone, one of Dr. Other Guy's patients cancelled. So I grabbed it and I now have an appointment for Monday - this Monday. As in, six days (not weeks) from now!

So now I'm thinking, my doctors got wind of all this bad publicity and got scared! They knew it could utterly destroy them. Well, finally!

But now, what's to write about? Maybe I have a hangnail or something.....

If this pain thing gets solved, I'm changing the name of this blog to Chocolate Chip Mint.

testing

Not sure what I intend to do here - except avoid work. Actually, that's not hard to do as I am disabled from a pinched nerve in my back. All I can do is stand (literally, as sitting is painful) and wait for the pain meds to kick in and for the doctors to figure something out.

My experience with this pain is by no means extraordinary. I'm sure there are others that are suffering right now from dibilitating pain and who are frustrated by their healthcare. I want a place where I can share my experiences (read, gripe) and hopefully find others who will share with me their experiences.

If pain (specifically back pain) is such a common experience, then why aren't there as many pain clinics as Starbucks outlets? When I call my doctor to complain of EXTREME pain, why did they say "How's next Wednesday?" After seven weeks of suffering, why must I wait ANOTHER four weeks to see a specialist?

I'm mad. Really mad about this. And yet, I consider myself one of the lucky ones: I probably won't loose my job, I can afford the medical costs, I have a loving husband and supportive friends who can help me through this. But, still, it's not right. The system is not right. Other people are loosing their jobs, are alone, and can't afford the care - even shitty care.

This trip has been long, painful, frustrating, depressing. (Thank you for all the shoulders I've cried on. You know who you are.) And, as of yet, there's no end in sight. No answers. I just want to tell my story and hear yours. I would like to think we could figure out something out together, but more likely we can just support each other. That, in itself, would be of great comfort.