another head-pounding day

It's been a year now.

I'd give a lot of things, if I had them, for a pain-free day.

My daughter invited me to a Christian concert next Friday. We have the tickets. We're going if I have to leave after 2 songs. I'll take *2* Vicodin if I have to. I haven't been anywhere like that for a long, long time. I plan on doing absolutely nothing that day except seeing the pain doc and sleeping so I will be rested and in the best shape I can be in for the concert.

My head hurts a bit more today and I know it's because I'm taking the time to do some sewing. I can't just sit here all the time. It drives me bats and I've gained weight and it makes me mad.

Patience...patience...stay calm...frustration only makes it worse...

Silly me

Two or three nights of falling asleep and staying asleep till morning and I start expecting it.

Like it's my right or something.

I've had two days of the Indomethacin now and nothing to report except bad gastric upset both days. No relief of my headache, but then to be honest I didn't really expect it.

Still, one can hope...

One has to hope. Without hope there is nothing.

pain management?

I saw the pain management doc today.

He wants me to try the Indomethacin for 2 weeks to see if it is hemicrania continua in spite of the fact that I reacted badly to it and the Neurontin before. I told him I'll try it but I'm not taking it long term. The gastric bypass makes it a no-no for me because it's an NSAID.

He increased my Prozac from 20 mg a day to 40 mg a day. I've been on the lower dose for 8 years or so; maybe this will help.

I don't know...

I don't like his attitude. My daughter didn't either.

We'll see.

No sleep for the weary

I got a little nap this morning, and another short one about 10:30 or so, and now I'm up again.

The muscles in my neck are pretty tight. I can feel them. Maybe I'll see if I can get to the chiropractor tomorrow. That will help the muscles even if it doesn't help the pain.

I think all that tightness might be from bread-making.

When I feel good enough to do, I tend to overdo, and then I get sore. I should know better by now.

Maybe I'll get some sleep later.

Sunday morning

Well, I was going to try to go to church this morning, but I'm up before 4 again in pain, so this dos not bode well for tolerating the sound and people that come with going to church.

I guess I'll stay home.

Again.

If the pain management doc can help me get this under control, maybe then I can at least go to church once a month if not more, and I know that will help. I feel so isolated sometimes...

Actually, more than sometimes...

Oh well, we do what we can with what we have.

one step back

The new neuro referred me back to the old one.

I made an appointment with a pain management doc for next Friday afternoon.

I feel like a ping-pong ball.

It's okay.

I keep telling myself that.

Apprehensive

I see the new neuro in 10 hours.

I'm worried about what she will say, what she won't say; what she'll do, what she won't do; what she'll suggest; what she'll want...

I worry about being in this kind of pain the rest of my life.

I can't sleep.

~sigh~

Thank goodness hubby is driving in the morning.

Grumpy

I am so tired of this pain I could puke.

I am tired of hurting all day, every day, like I have for the last year.

I'm tired of not sleeping for days and then feeling like all I do is sleep.

I'm tired of being grumpy.

I'm tired of living in the darkness.

I'm tired of spending my time alone because of the noises of others.

It gets wearisome.

Very wearisome.

Sunday

I decided to have my daughter and grandsons over today despite my pain level. Hubby and his buddy from work went to Mark Twain Lake to go fishing and the Sundays they do that it is a very long and lonely day for me. My daughter's hubby had to work, too, so she dropped him off and brought the kids over and we spent the day together.

They are growing up so quickly!

I paid for the day, though. My head is giving me fits again. The ringing in my right ear is becoming a distraction. It's louder than it has been, and now I'm noticing that when my pain level goes up, the ringing goes up too. Sometimes it's almost like a yell in volume if not intensity, if that makes any sense.

Again, I'm sleepless. I'm wide awake and hubby is snoring away.

I got one of the room-darkening shades made for the kitchen yesterday. If I can, I'll get the other two done tomorrow, and then we can hang them and it should help a lot. I'm making valances to match them as well so it will look nice in there. The front is a dark green stripe with roosters on it. It has fusible interfacing in the middle, and then the back is a mid-burgundy marbled color. It should make quite a difference in the amount of light that gets into the kitchen and thereby into my photosensitive eyes.

Thursday I go to the new neurologist. I'm not looking forward to the ride into the city. Traffic bothers me and I don't know if I'll feel up to driving, and hubby isn't the best when it comes to taking directions. I'll have to really look over the map again and make sure I know where we're heading so I can keep him posted ahead of time.

I have enough meds to make it till Thursday morning if I don't get a flare-up. I'm hoping this new lady won't be stingy with the pain medicine. I don't need a lot; just enough will do.

up and up

My baseline pain level is up to almost 6 now. I wonder how much higher it will go.

Thursday I see the new specialist/neurologist. Maybe she has some brilliant ideas, or at least a suggestion for more effective pain management.

I'd like to be able to celebrate the holidays this year instead of sitting in my cave with my hubby while the family does other things. I had enough of that last year.

I guess that remains to be seen.

do you suffer from chronic pain?

I am going to attempt to put together an anthology composed of stories related by people in chronic pain.

These stories will tell people about how we feel on a daily basis, what we do to cope, the good people we've met along the way, the struggles we've faced finding decent health care and understanding physicians, discrimination we've faced in the workplace from people who don't understand a sometimes-invisible disease process, how we've kept the faith through the pain, and anything else we want to share with the world.

I am hoping this will give those who read it some insight into the lives of people who struggle with pain each and every day of their lives, and whose pain may never go away.

I am asking for interested people to write and submit their writings for inclusion in this anthology.

Here's the email address I set up specifically for chronic pain stories. Please understand that by submitting something to this address you are implying consent for me to use these stories *without your real name* in an anthology that will hopefully be read by people and help further the understanding of those of us who live with pain on a daily basis. I will edit these stories, not for content, but for grammar and spelling. I will keep a list of all who contribute and you will get a copy of the finished product if you wish to do so. It may take a while to get this done, so don't expect a completed anthology next week.

Chronic Pain Stories

Thanks in advance.

awake

It's hard to sleep when you can't put your head on the pillow.

I did manage to get a couple hours...maybe 3...and I've been up again since about 12:30.

The pain isn't horrible, it's just making it very inconvenient to try to rest. I put my head on the pillow and it just hurts. And I mean it hurts. The pressure is incredible.

So I got up to keep from keeping hubby awake with my restlessness and I've been watching TV and hanging out on the couch.

Maybe I'll get some sleep later.

I was going to try to keep the van today and go to the grocery store but on 3 hours of sleep that's not a good idea. I guess I'll have to make a little list for hubby and have him stop on the way home for the few things we need. That will save gas, anyhow. I'll have to cut the top of the milk carton off so he can see which one to get.

I'm glad he doesn't mind shopping for me. He's a good guy.

update

It appears I may not have what one doc was sure I had. He thought it was atypical trigeminal neuralgia, but I always kind of hesitated when I read the description of it. I wasn't quite sure that was what it was.

The other day my most recent neurologist mentioned a phrase again he'd used before, and I asked him to write it down. When I got home I looked it up, and the definition is so much like me it's scary.

It's called Hemicrania Continua, a rare form of chronic daily headache that almost always responds to Indomethacin. The thing is, Indomethacin is what is used to diagnose and treat it, and I can't take that drug. It reacts badly in my body. I swell up and get confused and incoherent.

Still, the thought that I have something with a name, and something I look at and say, "Hey, that's me!" is a good feeling in a way. I'm sure they have other meds they can give me to help with the pain. Other people are sensitive to that drug, too, and it tears up your stomach and most people can't use it for very long anyhow. I think the max is like 5 years.

I was really surprised to see that Yahoo has a group for this disorder. That was neat. I didn't think they would. I bookmarked it and if it turns out that's what I have I'll join the group. There aren't many people with this disorder and it would be good to even have just a few I can talk to about it. It would help with the feeling of being alone.

I was up early again with pain in my head, so I decided to give in and take half a Vicodin. I only took 1 1/2 yesterday. I'm trying to limit it now to only taking them when my pain gets to a 7. I remember when I took them at a 5, but then the 5 became a constant companion, and now it seems as if a 6 is where I'll level out, so a 7 it is.

It's amazing what we can live with once we accept that whatever it happening is just how it's gonna be. Sure, I could moan and groan, but that wouldn't do anything but make me and everyone around me miserable. I might as well make the best of what I have and do what I can when I can and then when I have to rest, I'll rest.

Adaptation is a good thing, I guess.

A letter I sent

To whom it may concern:

I have been diagnosed with atypical facial pain, allodynia, occipital neuralgia, and chronic migraines. My PCP is Dr. M***, and I see Dr. M** B****, a neurologist at ***** Hospital, but because I live in *****, when I have breakthrough pain that is not controlled by my medication, which is at this point Vicodin ES 1/2 - 1 every 4-6 hours as needed, I went to your emergency room for treatment because it was close and I had been treated well there in the past.

In the past I have received 2 mg of Dilaudid and 50 mg of Phenergan IM for this breakthrough pain and it has been effective. Until recently, there were no problems getting treatment so that my pain was at a manageable level. By this I mean bringing it down from an 8-9 on a 0-10 scale to a 4-5.

On Tuesday, July 1, I went to the ER. The staff declined to put me in one of the rooms in the back, putting me instead in a curtained area despite my informing them that I have hypersensitivity to sound and light when my pain level gets to this point. They also left me sitting in the waiting room with the TV volume up and people talking loudly despite me asking if there was anywhere else I could wait. The doctor I saw that day was less than compassionate. The only reason I got the medication I needed was because I insisted on it.

On July 12, I returned to the ER. This time, the physician - the one who had seen me the time before - once again made an issue about the dose of Phenergan and tried to have the nurse give me a lesser dose without informing me that there had been a change. They put me, once again, in a curtained area, and on the other side there was a child getting stitches in his face, which I understand happens in an ER, but they also told me when I asked for a room that there were no rooms in the ER, only curtains. Now I've been going to this ER for over 6 years and I know better. The physician never even saw me until after I got medicated. He never listened to my heart or lungs. He never touched me.

Tonight, September 1, I found myself in need of the emergency room once again. I have been fighting returning to this ER for 4 days because I remembered the treatment I got the last 2 times I was there and was concerned about things getting worse. When I got there this time, I overheard one of the nurses making a snide comment about me. See, one of the side effects of this disorder is that I have very sensitive hearing. I've overheard staff talking about me in a derogatory manner more than once. They put me in a room, and when this male nurse came in and asked me what I'd done for the pain, and I told him I had seen the neurologist today and that I had an appointment at the W*** clinic on the 14th, he remarked that I had told him that the last time he took care of me, rather like he didn't believe me. The doctor, this time a different one, came in and showed no consideration at all for the fact that I am increasingly noise and light sensitive when my pain levels are high. He informed me that he was not giving me what I had requested, but rather Toradol, Benadryl, and Phenergan. I told him that Dr. B**** had told me to have them call if they had a problem with the meds, and he said he'd call, but he wasn't giving me narcotics if I was taking narcotics already. Despite me telling him that I had pain on the right side of my face, he insisted on palpating my neck in a manner that induced me to cry out in pain, at which point he asked, "Did that hurt?" I don't ususally yell if I'm not in pain.

I have been an RN for 15 years, and I know some things about chronic pain outside of what I've experienced on a personal level. I know that people on narcotics for chronic pain are often treated with other narcotics for breakthrough pain. If the pain is bad enough that Vicodin doesn't help, then it is highly unlikely that Toradol is going to help, especially if it hasn't helped in the past.

I chose not to stay and be treated by someone who obviously thought I was engaging in drug-seeking behavior. It is humiliating enough to lose a career and my independence due to this situation; I don't need to be looked at as less than anyone else simply because I am in pain 24 hours a day, 7 days a week, and have been since October of last year.

I will not be utilizing any of your facilities in the future if this is the kind of behavior you accept and condone from your staff and doctors. It violates the patient bill of rights that states:
"Respect and Nondiscrimination. You have a right to considerate, respectful and nondiscriminatory care from your doctors, health plan representatives, and other health care providers."
and:
"Complaints and Appeals. You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about...the conduct of health care personnel..."

In the future I will choose another non-affiliated facility for any necessary visits, even though it most certainly will involve more travel and a longer wait to be seen and treated. I did not deserve the treatment I received at your facility and I will not tolerate it any more.

Me, RN

I recognize this song...

The words go like this...

Be thankful you got 3 hours of sleep. It could be worse.

I'm sitting here in the dark with my sunglasses on because the light from the monitor hurts my eyes.

I want a different radio station.