Wednesday, October 18, 2006

Chronic Pain and a Loving Partner

I have lived with chronic pain since 1996. Actually it started before that but it was managable, in '96 is when I started treatment with pain meds, had gobs of surgery and my life as I knew it changed completely. As did the life of my husband.

Many men would have walked away from this situation, my first husband would have... this I know for a fact. But my current husband and I just marked our 20th Wedding Anniversary in Sept.

It has not been easy but not once has he complained, atleast where I could hear him. If he comes home from work and I am asleep, he cooks dinner for the kids. I got tired of fussing about dirty floors and bathtubs (and it wasn't fair to fuss at him about it) so we just budgeted in $100 a month to hire someone to come in and clean the floors and bathrooms. She comes twice a month and does a fair job, but she is young and doesn't give a rat's patoot or have the work ethic that the first mature woman I hired had. The first lady I hired actually dusted, cleaned the kitchen and knocked down cobwebs as well as floors and bathrooms..... for $50.00 twice a month. Unfortunatly, she became ill and had to go to work for a corporation to get insurance.

Sex.... well. It may sound horrible but even when I'm not "in the mood" I go for it a couple times a week because it's the right thing to do. He doesn't push it, he doesn't complain and if he can tell that I really feel crappy he will turn me down. But I always put on a happy face and usually get into it (he's good) after a few minutes. There have been occassions where we may go a month but pleasure can be had in ways other than the traditional. We are creative.

He is very aware of the fact that during the winter months I am pretty much homebound due to the proliferation of germs out in public. Folks are pretty nasty and my immune system is shot due to 5 years of IV antibiotics. Closed in spaces such as movie theaters are horrible, concerts, etc. So we take weekend trips to small towns and hit the antique stores or just see the sites. We rent lots of movies to watch at home and have friends over for pizza and visit with family.

He has had to take over the grocery shopping for the same reason. People think nothing of sneezing in your face. We don't eat fast food or salad bars. I am very careful about what restaurants I eat at because one filthy cook can put me in bed for a week.

He doesn't complain.

I tell him often how much I love and appreciate him and all that he does for me. I DO NOT COMPLAIN TO HIM OR OTHERS ABOUT HOW SHITTY I FEEL. What good does it do and who wants to hear it? He knows me well enough to read it on my face, or by the way I walk.

My oldest daughter is amazing too but it is different. My youngest at the age of 18 is only into herself plus she has pretty much grown up with me being ill so she doesn't know what to do or when to do it. She will learn.

I hope that you all have someone as wonderful as I do.

Be happy, find happiness in a hobby, friends, pets, family anything. Don't let yourself be alone. I'm here for you if nothing else.

Saturday, September 23, 2006

Chronic Pain Patients and Drug Addicts

I have read several studies indicating that chronic pain patients do not become addicted to their medications. You can build up a tolerance to the medication and require a stronger dosage over a period of time but you do not exhibit the drug seeking behaviour that drug addicts show.

To me this is a very important piece of information to have.

I know a couple of people that use "chronic pain" as a way to have access to narcotic pain meds. They are constantly running to the ER after office hours to get a "pain shot" because their pain is unbearable. But when you ask them about their pain they are always vague and non-specific. "I hurt everywhere." As they suck on their opiate lollypop and drool runs down the chin.

One lady, we used to be fairly good friends, lost her job because she was getting wasted at work and actually sleeping at her desk. They fired her after they obtained several hours of video tape of her sleeping, once she had her face in her lunch. This is the action of a drug addict and not someone with chronic pain.

If your pain is so bad that you are having to go to the ER for shots of anything, then you need to find a new MD and get on a good pain control regimen.

Controlling pain is a 24/7 venture. You have to stay one step ahead of it or else it will kick your butt and getting back on top of it is a long hard road.

I think that is why I like my pain patch so much. As long as I remember to change it every 3 days, I'm okay. My MD just raised my dosage for the first time in 3 years and it has made a big difference, my break-through pain is much less. In the 11 years that I have had chronic pain I have never gone to the ER because of the pain in my back... ie. I have not had a shot of Demerol in the ER for my pain in all these years. This is because I had good doctor's from the very beginning who educated me on the mechanics of pain and what I had to do to stay ahead of it.

Talk to your doctor if you feel that you are in more pain than you need to be. Be specific about where your pain is. Be assertive and change doctors if you have to. If you feel that you have an addiction problem please get the proper help, don't put yourself and your loved ones through the hell of drug addiction. My friend, former friend, is miserable and is alienating everyone who used to be near and dear to her... all for the sake of a high.

Wednesday, July 19, 2006


In today's toxic society everyone needs to take Milk Thistle.

Milk Thistle heals the liver. The liver can regenerate itself and Milk Thistle helps it do just that. To read my personal introduction to Milk Thistle read the post before this one. Since I started taking it I have introduced a number of people to it with astounding results.

  • My Daddy had chemical induced hepatitis (he is a petroleum chemical engineer) and his liver has always given him problems. He has been on Milk Thistle as long as I have and has perfect liver enzymes even though he is on a cholestrol lowering med. that is hard on the liver.
  • The son of a life-time friend of ours was in the hospital in the final stages of cirossis of the liver from alcohol abuse (they gave him 2 weeks to live). My mom told his mom about the amazing Milk Thistle and she started smuggling it into the hospital and giving it to him, 4 a day. 3 weeks later he was released from the hospital, he is remarried, sober, healthy and very happy. The doctor's were amazed at his recovery and I don't think that Auntie T. ever told them what she had been giving him.
  • I know 3 people who were in liver failure but within a month of starting Milk Thistle their livers were healing and they were getting well.
  • I have several other stories but I think that you see what is happening here.... this little herb is what I call a miracle drug without the pharmacutical label and price tag.

European countries have studied Milk Thistle but the personal stories I know of are what amaze me. What baffles me is that Doctor's don't tell patient's about it. Milk Thistle can't hurt you and it doesn't interact with any medications that I know of, I have talked to several pharmacist's about it and they have looked it up.

Your liver is like the air conditioning filter for the body, it filters out all the gunk that we put into ourselves. If you drink, you need to take Milk Thistle, if you are on medication.... you need Milk Thistle. It will keep your liver functioning the way it needs to be effective and healthy.

I started off on 4 a day and tapered down from there as I started feeling better, I now take 1 a day. I purchase mine from they often have buy 1 get 1 free sales.

DISCLAIMER: This information is not intended to take the place of an MD or DO. This is just my personal experience and that of many people I know. I also know that this information is not common knowledge and that in itself is a shame. Step outside the box, herbs have been around for centuries, talk to a knowledgable person or do your own research before taking anything. Big medicine is not always the answer. Take control of your health and your healthcare.

Friday, May 19, 2006

Gallbladder Pain After Gallbladder Removed - Milk Thistle Saved My Life

About 15 years ago I began having horrible abdominal pain, it was excruciating. The good ole docs decided that it was my gallbladder, even though the tests showed no inflammation or gall stones.

What the hell, I went ahead and let them take that puppy out, I was sick.

3 days later the pain was back but this time it was much worse but when I went back to the doctor he thought I had gone crazy. It wasn't a constant pain, it occured atleast once a week and was a pain like I had never felt. It was on my right side almost under my ribcage and it seemed to travel to my back. It also felt like it went up my chest and down my arm. It would take by breathe and there was nothing I could do to ease it. The day after a pain episode I would be very lethargic and sick to my stomach, the lethargy would go into the next day as well.

I eventually went to a Gastrointerologist, he was baffled by this but he asked me to go to the emergency room the next time I had this pain and get my liver enzyme functions drawn, this is just blood work. Amazingly, my liver function tests were incredibly high. We checked them the next 4 times I had an "episode" and the liver enzymes continued to climb. They would come back to normal in between the pain episodes. My liver biopsy showed some inflammation but was otherwise normal.

The GI doc sent to to the "best GI Doctor in the world" in Racine, WI. (I live in Kansas). This fellow ran more tests and did a sphincterotomy (sp?) and sent me home, still with no diagnosis. Of course by this time I am on 6 different medications for something that no one can put a name on and I am getting sicker by the minute.

8 months into this, I had 4 liver biopsies, my liver enzymes were being drawn twice a week and I think I am dying, the bad thing is no one is telling me I'm not going to die. I'm in my mid-30's.

I just happen to run into a schoolmate of my oldest daughter's who has hepatitis C and is undergoing treatment for it. She tells me about some herbs and vitamins she is taking.... I do some research on them and one that keeps coming up for liver problems is Milk Thistle.

I started taking Milk Thistle, 4 a day, and my liver function test a week later was NORMAL. 2 weeks go by and I had not had a pain episode, my liver enzymes are still normal so I quit taking all of the prescription medications. A month goes my and I have been eating, liver enzymes are still normal and still no pain episodes.

Of course my doctor's are stumped and they really don't want to admit that the Milk Thistle had anything to do with it.... yeah right.

It turns out that I had/have Biliary Dyskenisia or Sphincter or Oddi Disfunction. Basically, the biliary system goes into spasms and backs everything up into the liver, this is what causes the liver enzymes to go out of whack. If this goes on long enough it can do some bad damage. The upside is, the liver can repair itself and Milk Thistle does that. I now take 1 Milk Thistle a day. I get mine from

How I have learned to live with Biliary Dyskenesia or a messed up Oddi:

  • Never let yourself get hungry, I don't know what this has to do with anything but if I let myself get really hungry I can feel the pain coming on.
  • You can knock down the severe pain with buttered bread.
  • A super low fat diet will make the pain worse, I tried Dr. Phil's diet book and the pain came back really bad
  • Eat a little something before you go to bed, my pain usually hit me about 2 a.m., so now I eat a piece of buttered toast or something else small before I go to bed... just as a precaution.

FYI - I read that laproscopic removal of the gallbladder can actually bring on biliary dyskenesia. This was in a "small percentage" of the cases but it does happen. In my case, BD was the original problem and not my gallbladder but if you are still having gallbladder pain after your gallbladder is removed..... here ya go. Don't panic just try some of the things outlined here and see if they work for you. The laproscope still beats the old open surgical removal of the gallbladder.

I would be more than happy to respond to your questions about this here on this blog.

DISCLAIMER: I am just a lay person who has lived through this and want to share what I learned. This advice is not intended to take the place of honest to goodness medical advice from a licensed MD or DO. But please never be afraid to step outside the bounds of conventional medicine, ask questions and do your own research.

I LOVE my Durgesic Pain Patch

I have been on Durgesic for a little over 5 years and can't imagine my life without it.

The active ingredient is Fentanyl. This is one of the medications that is used to put you to sleep for surgery. It is a very strong medication and as far as I'm concerned it is extremely effective for controlling chronic pain, especially back pain.

Before I was on the patch I was taking Oxycontin and I was a drooling vegetable with no quality of life. I had been on this mess for 4 years and did nothing but sleep and go to the bathroom. I ate only if there was someone here to remind me to eat. It was pathetic, I was pathetic.

When we found out that my oldest daughter was going to have a baby I told the doctor that I needed something that would allow me to be an active participant in her life or I was going to kill myself, I did not want to "live" in the state I was in. This is when I was introduced to the pain patch.

Within a week I was out working in my garden, I was cooking meals, I was an active participant once again in my family.... it still brings tears to my eyes to remember back to those days.

Here I am 5 years later doing everything that I want to do which is basically anything that my "new body and life" will let me do. I know my limitations and as long as I stay within those, I'm good. If I do more than my back and body want me to, then I have Lorcet for the breakthrough pain but I take no more than 2 a day. Usually this is 1 at bedtime and 1 about 3 a.m.

I am truly amazed at how many people are still taking the conventional narcotic pain meds when this wonder drug is out there. No, you don't get the head rush or buzz that you get from oxycontin or dilaudid. But honestly, if you are going for the head rush, you are addicted and need to question the level of pain you really have. I have talked to several people with supposed chronic pain who refuse to even try the Durgesic Patch simply because there is no buzz from it. Personally, I want the quality of life with a little less pain that is easier on my liver that I get from the patch.

The Durgesic Patch has been given a bad rap due to misuse, it is not for acute pain it is for chronic pain, and abuse. If you abuse any drug yes.... it can kill you. There has been talk of removing this wonderful medication from use by the public due to this misuse ie. the doctor's are once again prescribing a medication where it isn't indicated and the abuse by folks that will abuse cough medicine if they have enough of it.

I urge you to talk to your doctor about the Durgesic Patch. Over the past 10+ years I have been on just about every pain medication on the market and this is the only one that truly works without horrible side effects.

Monday, April 24, 2006

Pain in the Neck Doctors

One of my truisms is trust your doctor and believe in the treatment you are getting. As a chronic pain patient this includes calling in refills in a timely manner... not 5 days later.

I have been fortunate to be with the same group of doctor's for 15 years, this pain management doc. only a few months. I fired my previous pain management doctor because of some questionable office practices and billing procedures and asked my PCP to take over the filling of my pain meds, she agreed but then this guy joined the group and she asked me to see him... which I did.

Here we are 6 months later and the level of trust is not there so I am once again going to see if my PCP will fill the scripts and if not I will change groups all together.

A month ago I made my month med refill appointment... which is tomorrow, but they don't have it on the books. So when I called on Thursday for a refill they did not refill my script because I had not made a follow-up appt. Why didn't they call me and ask?!?! Instead they let me go most of the weekend without pain meds.

This is not the first time this has happened and it won't be the last so it is time to make a change, I do have options. This is not quality health care, not that we really get that anymore here in the U.S..... unless you demand it from your provider, which I do.

Just don't forget that we do have rights. Write your insurance company and the providing doctor with your displeasure. We may be in pain but we aren't idiots.

Thursday, March 30, 2006

What I have learned in living with back pain

I have learned that you MUST educate yourself on your condition and be your own advocate. I am fortunate that I have an amazing group of Doctor's... other than my current pain management doctor but he is on his way out. If you don't know what is best for you then who does? There will be times when you have to fight tooth and nail with the insurance company and your physicians so you have to know what you are talking about.

This pea brain pain management guy I am seeing right now has messed me up big time but it assume some of the responsibility for it. He decided that I needed physical therapy to "strengthen my core" now knowing that I have 2 bulging discs and the horrors I experienced with PT in the past I know that this was not the best idea. But I went ahead and played along. 2 days after my first appt. I could not get out of bed... this was on March 7th. I am still in a great deal of pain, more pain than I have been in in quite sometime.

I had an MRI on Monday, I have now herniated both disc, have an annular tear and there is inflammation in the disc (I'm not sure what this means). Of course he can't get me in to be seen until the end of next month so I have contacted the administrator of the corporation for this doctor's group and complained about him not allowing appointment slots for follow-up visits but I will be going to my orthopaedic surgeon. Not that I will have surgery but because I need to have some pain relief and quick. My patch and the Lorcet aren't cutting it.

PT works great in most cases but has not proven to be the best thing for me.

My Back Pain - How it came to be

I have always had some level of back pain due to a common birth defect, a spondylolethesis. Most folks have spondys and have no symptoms, my pain started with my second pregnancy. But since I had to work, well, I continued to work through the pain.

After the birth of my daughter the pain eased up some and I managed it with exercise and physical therapy as needed. But, in Oct. 1995 all hell broke loose. I was an x-ray tech working for an orthopaedic surgeon, ironic isn't it. I was lifting a patient with the help of his nephew and the nephew let go, I bent double and wham, I was racked with the worst pain I had ever felt. I went ahead and x-rayed the patient, threw him back in his wheelchair and crawled into one of the exam rooms to rest. I talked the secretary through x-raying my back but of course we needed an MRI. I managed to work a couple of more days but have not worked since.

I ended up going in for the first of many surgeries in late October. I had rods and screws inserted in my lumbar spine to stabalize it and as fusion was done. The fusion did not take so 3 months later a second fusion was attempted.... I got infected with staph during surgery.

The surgeon aka asshole (not my former boss) did not think that the green stuff oozing from my wound was cause for concern, nor the intractable pain, nor the temp of 102. So I wandered this earth with a raging infection for 6 weeks. Finally, one morning I was so ill and in such pain I could not breath so I went to my former boss, raised my pajama top and showed him the incision, he closed his office and took me to the hospital. At that point he became my treating physician. I was toxic, the staph was in my blood and I was about a week away from death. I was placed on IV antibiotics which I ended up being on for almost 5 years.

The next 6 years were filled with surgeries to debride infectious material, remove hardware, try to stabalize my spine, redo fusions, all to no avail because the infection was still so rampant and strong. In total I had 8 back surgeries. We could not knock down the infection because whenever I would get to a therapeutic dose of Vancomycin I would have an allergic reaction, they tried desensitization but that didn't work either. I eventually lost 40% of the hearing in one ear to otic toxicity from the Vanco. Finally a new antibiotic Synercid was put on the market and that very day I was put on it, within 6 weeks the infection was tamped down.

I now have chronic osteomyelitis and have reoccurances of the infection from time to time but we know what works and I know what to look for. I get infected by anything and catch every germ there is so I have to avoid crowds, salad bars and be vigilant about washing my hands and what I touch. I cannot have more back surgery because of my infection risk.

I am 45 years young. On the pain scale I am at a 5 everyday. I am on the Durgesic patch (I love it) and Lorcet as well as a couple of pills for nerve pain in my legs that I take at night. I garden, sell antiques... which means I have to shop for them too, I cook for my husband, have sex, I do not do floors or bathrooms I pay someone $50 twice a month to do this for me but I do the rest of the housecleaning. My husband goes to the grocery store and does the laundry (he did that from the git go.) My life is good, yes, it has changed drastically but it is good.