Pain Management - Caution or Cruelty, the thought continues...

Back to pain! Partly because it never really goes away, and partly because I believe that if pain was managed properly, then addiction would not be the issue that it is. It is my Pharmacist, not my physician, who has helped me through this next 10 days by supplying me with a limted number of pills to use until my Doctor comes back from 10 days vacation. I hate to think what I'd be saying now if that wasn't the case, if my Nurse Practitioner and Pharmacist didn't go to bat for me. But then I probably wouldn't be saying anything, because I'd be in bed rotating packages of frozen vegetables around the most painful parts of my body. The other alternative to this is to sedate oneself out of the pain using gravol, or taking my sedative meds early. The kicker here is that I do have a semblance of a life, which includes my most marvelous, son who needs me to be here for him. I count and ration my pills,(It reminds me of Fagin in Oliver Twist counting his money) because if I have an appointment to attend and drive to, I may need more medication than I've got...so that has to come from another day that I have to then write off for functioning ie.walking the dogs or doing laundry or picking up groceries.  Instead I must  stay in bed...again. I am always robbing peter to pay paul. I feel more intensely about my pills when I'm always afraid I'm going to have a flare up and have no help for me which again affects Matt.
I get my limited number of pills for the month, and that's it...there's no room for flare ups, no room for getting me through laundry and cleaning day. So often, there are many thinks that don't happen unless I add my own little helpers to the mix, like Tylenol 1, 4 tabs Q 4 hours,plus a gravol...
I'm not surprised at the "stomach contents" list of dead celebrities...Were they killing themselves, or just taking one thing after another just to get relief that no one physician will give them. This is serious stuff...People are dying because of it, and I don't think they have to.
Why can't I get the maximum dose, and be relaxed in the notion that I have back up for flare ups, and  don't have to keep counting pills, because I'll have enough to deal with not only doing the shopping, but unloading it, and putting it away, and the two days of painful hell that follows it. It would be nice to have one less thing to worry about.

Chad/Sudan: Darfur IDPs and refugees want rebel factions to join hands as one new movement with one chairman

We gather in memory of those who died in the Holocaust, and say we do this so that it shall never happen again...and again it happens. It happens..again and again...
Chad/Sudan: Darfur IDPs and refugees want rebel factions to join hands as one new movement with one chairman

Prom Night In Mississippi - HBO Canada

This is a great documentary, although the content is sad...sad that we're still dealing with such extensive racism in this century. Kudos to Morgan Freeman for putting it together, the kids for taking advantage of the opportunity, and here's hoping that it changed more than a dance! Watch This!

Prom Night In Mississippi - HBO Canada

The Perils of Pain...Caution or Cruelty? Whats do you think...

Do you remember that scene in "Terms of Endearment" when Shirley MacLean's character is losing it...well if you don't remember watch the clip below...

Terms+of+Endearment+-+Emma%E2%80%99s+Pain+Shot

I think when anybody gets the diagnosis of a terminal illness their biggest fear is how they will deal with the pain...it's the pain that is more scarey than the actual dying part, and they would be right. So what is our best hope for a peaceful death? One without pain, or at least with pain well controlled. But there's a possibility that may not be the case, as celebrities and the like are dropping like flies having overdosed on amazing combinations of drugs, legal and illegal. We who suffer with chronic pain do so at our own peril. There is a "Patient's Rights" document regarding chronic pain, that lays out the rights of a patient to be given good pain management...but does it happen? My experiences have been very dodgey to say the least. The whole idea of administering narcotics has become a sinister affair...I feel guilty for asking for pain relief! As if I am under some suspicion of being a "drug addict"! I wait for an hour in the waiting room on not so comfortable chairs, while every bone and muscle in my body, neck and head are pounding to the point of nausea. When I meet with my practitioners, we go through all the typical questions, and I'm met with of course information about other therapies such as naturapathy, and accupuncture that I cannot afford anyway, and there is an air of tension in the room. It's palpable! This previous week we had changed my pain medication because of breakthrough pain, but I could not tolerate it. I was wretching, unable to eat, unable to go grocery shopping (we had run out of food) and so totally spun out, I had to go to bed for 3 days...but it was suggested that maybe the dosage was too low?! I am very close to losing my temper when she announces that there really isn't anything they can do until a week on Monday...a week more with no relief from pain, but I am responsible for the care of a 12 yr old boy with ADHD and I don't have relatives just down the street to come in and take my place. I have been ill for 9 years, unable to work for 7, and started narcotics maybe 5 years ago. I have never received the full dose as decribed on the jar, actually 50% less!!
When she tells me again that they can't help me (I had called the office 3 times describing my reaction to the dilaudid and requesting help)and I finally let go and tell her that is unacceptable...there is no way I can go through March break, or any other break, without proper pain management. I understand they need to be cautious and I don't want to become addicted. I have, in the past, stopped taking narcotics, voluntarily, to see if I could function without them, and avoid this awful struggle of aquiring and managing narcotics...but until someone can provide me with a maid to clean the house, do laundry, groceries, be a mom/dad, and do yard maintenence...then they HAVE to properly address my pain without making me feel like a criminal!
This life is a struggle and having your care team on your side is paramount...they just have to get this...rather than assume that someone in chronic pain can just wait...and wait...and wait! Not anymore. This has to change and I'll use my patients right documents if that's what it's going to take. It's funny but we "disabled" people sureley have to fight hard for everything we get.

Horizontal Inspiration...

That's cool...now if only I could get out of bed!

Sick, sick, sick...

I am so very sick of nausea, very sick of extreme fatigue, and very sick of PAIN! The irony of this is that, other than the pain, the nausea and some of the fatigue, are exaggerated by the side effects of all the medications I'm on for everything else! I take about 20 pills per day. The illness sucks, and the side effects suck. Trying to manage pain is a real problem. Last week I saw my Nurse practitioner about my pain medication, as I have been having breakthrough pain some 3 hours into a supposed 6 hour stretch of relief, so she decided to try me on dilaudid...Well forget it! I cannot function at all with that stuff, but did get pain relief...in between all the wretching. So now I've stopped taking that of course, but cannot get my Nurse practitioner to get a script for the old stuff rather than nothing but continuous pain...I've left her 3 messages, and really don't feel up to going in again. The whole process of getting in to see her is fairly lengthy 30 - 45 min. wait, but that is an improvement over my GP, whose wait time is 1 hour on average. If I could lie down and have a rest while I'm waiting it wouldn't be so bad!!! I'm also quitting smoking and have been taking Champix, which is yet another additive to the mix, but it's working so I've gotta suck that up. We ran out of food last week, but since the fridge is broken, and I've been to ill to buy a new one and go grocery shopping (I hate grocery shopping, even when I'm stocked up with pain meds, I make it through the store but start to flounder in the line up, and by the time I'm loading it all into the car I'm totally drained, and can just get home and fall into bed...the groceries have to stay in the trunk for awhile until either Matt gets home, or I can revive enoghh to do it!) Matt's been eating alot of take out, and me...cereal. But I know that just like always we will muddle through, and this too shall pass, but I just wish life wasn't quite so hard. I know that I am blessed, and have more than enough to be greatful for and I thatnk God daily for that. I'm just feeling particularly sorry for myself tonight, and that's all there is to it! Thanks for listening.

Ideas on Terrorist Management!

Today I received another email from "JJ" (the lady whose email I found offensive, I told her I was offended, at which point she explained just how offended she was at my being offended, and in detailed language and so on...) who had reccomended that we not email each other again!!! J.J.shared another witty email suggesting that we develop an alternative to "body scanners" at airports and replace them with a device that simply blows you up if you are carrying explosives!!! Yes I found this funny...it's better in the email than my retelling of it, but then I thought how selfish of us to waste those explosives on just one person at a time.  My idea is to kidnap Kathy Griffin, stitch her lips with dissolving sutures, embed her briefly with the Canadian Armed Forces, and then have them launch her into Taliban Territory. Fifteen minutes with her and they will all give up, or kill themselves.

After all, it's our free speech that gave us Kathy Griffin...isn't it time to give back?!