Wednesday, December 10, 2008

Hello everyone

  Hi everyone. I want to let everyone know that I have a new site for this blog. The new site can be found by searching for . That should get you to the new blog site. If it doesn't then leave a comment on this blog so I can look into why you are not getting to this blog by typing in the above search words. Thank-you and I hope you can follow my blog at the different site.  

Tuesday, December 9, 2008

more appointments

  Hello. I hope that everyone is feeling OK.
 I was in at another appointment with the Nero modular nurses today.  I thought that the meeting was about what more could be done to help my pain. That was part of it. The rest was about my wife calling and being overly concerned about my suffering. The nurses then wondered if what I was using was giving me any help at all. It was not what I thought that the meeting was going to be about.  I was questioned why I didn't tell them about my fall last time I was here. It wasn't like they could do anything for me anyway.  I was criticized for not wanting more help when my wife wanted me to get more help. Then I went and changed my mind about the help I thought I needed which also annoyed them. There is just no way I can think on the spot anymore. So there I was bombarded with Statements and questions that I had allot of trouble answering in a timely fashion. It was just upsetting for me. Oh well I guess even pain management nurses lose their patients with patients. 
   I am trying to help myself and to  make my life as pleasant as possible but it is hard to come to any conclusions or to make any decisions when you suffer chronic pain. I am the one that would rather tough it out and see if there is any possible way that the way things are at present will work without making changes too quick.  Sometimes when these decisions are left too long I start to suffer enough that the people that care around me get concerned. Try and stay tuned into others around you that are doing their best to help.
 I didn't describe my pain pump yet and how it works but keep following the blog and I will get to it.  
  Write something positive about your day. For me I had a receptionist at the hospital give me Christmas cookies today. She had made me a birthday cake in April. I left and went back home to the Yukon before she had a chance to give it to me. So today she made sure that I got the Christmas cookies. IS that nice or what. It is great when people do things like that. It made my whole day.

 Hang in there 

Monday, December 8, 2008

Hello again

 Hi everyone. Sorry for the absence again.  I made it to Sask. To see my nurse. I had my first appointment today at 10 a.m. It sounds like a change of medication is in order. More on that as I get filled in myself. That won't be until tomorrow at 2:30 p.m.

  If you have suffered or on your way to suffer with chronic pain. You will be in a pain clinic at one time or another. Even my best pain specialist in my home town recommended it. He did help but knew that the rest would be up to the pain clinics and myself in learning what I can do. Do go if you have a chance. Does it cure you, no. What it does do is it fills your tool box up with tools that you will need down your path of chronic pain. You cannot have too many tools for this journey. Take from it what you can and leave the rest!
  Getting off the pain killers(narcotics) is another thing that I highly recommend ! Can we all stay off the pain killers for the rest of our lives ? I doubt it myself.  I was off all my pain meds. for three years. What it meant was I had to endure more pain. After three years or so I tired of the steady high levels of pain. What I wanted was some peace. Some peace means taking some Pain relief. It also requires a shift in the way you think about your pain. 
  During this time with out the narcotics I was taking Tylenol steady. I was also taking anti inflammatory medication on top of that. It isn't that good to take as many Tylenol as I was taking at the time. The oral anti inflammatory bothered my stomach. I think that it is good to try this method to gain some control over the pain and give oneself some quality of life. Try it for as long as you can. Don't forget to include a good attitude during this time.
  Danger is around the corner when using narcotics. It is especially bad for me or anyone with an addictive personality. What does this mean? Well we need to have satisfaction right away. We need to be rewarded immediately. This is the type of people we are. How does this tie into using narcotics. Well we get pain relief right away don't we ?
  Did I ever think that I was addicted to narcotics ? No I had no idea what it meant. After all I was not getting high with the medication. This is how narcotics can trick you. Narcotics are addictive. The way they are addictive is what I didn't understand. Now I do. If you suffer from pain and you take some narcotics and the pain goes away or lessens what just happened ? You got instant gratification. This is the addictive pattern that occurs with the pain meds. It is not about the High. It is about the instant pain relief that we get. Soon your body will need more and more narcotics to have the same affect. Later on your mind and body will get the narcotic by making you feel more pain ! This is one pattern of pain killers. This pattern is how it affected me. My addiction came from instant relief or just some relief.
  After saying that I am still taking Pain meds. I do not take the pain meds twenty four hours a day rather I take the meds when my pain is at it's worst. I take a fast but short acting pain medication for my break through pain. This type of pain med is even more addictive. It has the quick fix capability that an addict like myself gets addicted to.
  Here is why I take the pain meds. I made the choice in my life to not suffer so much pain. To help myself to live without so much pain. I felt I owe it to myself and my family after the suffering we endured during the time since my accident. I will deal with the addictive properties as life goes on. Be very careful with any pain medication. If worse come to worse and you do not get anymore quality of life from the pain meds. you can make the choice to get off the meds for a while at least.  
  Getting off pain meds is a frightening thing for people that suffer in pain. Don't be scared try it. Go to the hospital or a rehab institute to do it if you have to. If you take a large amount of pain meds and nothing is working then taper down and get off as many as you can. It isn't easy but you won't regret doing it. It will give you a clearer understanding of how it has been affecting you.
   Two theory's 
  When you take pain meds for so long it cuts off the brains natural ability to make the pain killers naturally for you. Another argument is that when you suffer for so long in pain the brains mechanism for making pain killer is over taxed and can't keep up. 
  If you have cut off the brains ability to make pain killer by using narcotics, then when you stop taking it the brain will start making pain killer naturally again. On the other hand if the brain cannot keep up to making as much pain killer for your pain  then using a narcotic to substitute  the brain's natural ability  will aid in controlling ones pain. Which theory is correct?
   It is a personal choice to use narcotics. Please use with caution and stay aware of it's affects on the body and brain. It really is up to you. I am letting you know some of the things I have learnt about pain medication. There is pro's and con's to using them and not using them. Choose wisely and do what is best for you and your family at the time.  
 I want to ask everyone to remind themselves of something positive that happened in their lives.  For me I make it to see my Nero modular nurses. Hopefully I will get some adjustments and get some better pain relief. That is what it is about isn't it some relief. That is all 4 now. 

Wednesday, December 3, 2008

another day

     Hi everyone. I have not been blogging lately. Sorry. I have had some other life things going on. It's not that "life Things" take too much time, it just takes too much of my healthy time and then I am unable to write at the end of the day. I want to continue where we left off on Sun.
  If you are suffering or know someone that suffers in chronic pain, I hope that this blog can be helpful.  I will fill you in to, what I did  after the surgery. If you had one. Or What to do after you see the doctor because of pain and the doctor sends you away and says "there is nothing we can do". 
  You have a choice to do your own research. If you cannot have someone help. It is so good to know as much about the subject that is hurting you as you can. Like I said I found a doctor that understands pain pretty good. My family doctor could only help by giving me more pain meds. Pain meds are good but you have to learn how to use them. I had so many pain killers and so much pain killer that it no longer was being useful in my life. I tried everything available locally with no help. It was time to see my surgeon. This can be requested through your family doctor when ever you and your doctor feel the need to see the surgeon. 
  I had to travel to Calgary and this like I said is not pleasant. At the time I never flew alone. So I did have help on my  travels. I had an appointment to see the surgeon. We knew that it would involve taking MRI to see what the problem could be. I also was scheduled to take a bone scan during the same time frame.
  The tests were all done and I was scheduled to see the surgeon. My hope was to hopfully find what possiblily could be holding up my progress. I somehow thought that the surgeon was going to help. I was still in the "God" state of mind  in the way I though of the Surgeon. I was so wrong they are just people that have a skill at something the rest of us don't. I was hoping that the surgeon would just say hey It could be this nerve or that nerve or a cut here or a cut there. Not true. I got the attitude. The surgeon said "it looks much better than it was". Excellent statement isn't it? In the next breathe he pointed out some problem spots. At the time I still had disc material and surgical material around my spinal column.  Can that be good? Oh right it looks better than it was. Right ?! Don't ever admit to any guilt. My surgeon wasn't going to do that.  A nice talk about it and suggestions to what I could do to help myself was what I hoped our meeting  would be like. Not what I expected
 Time went on and I got several opinions as to what I should do. During this time I was also working hard to stay as healthy as I could.  I had the same surgeon say that he would fuse my thoracic vertebra together. He had gave me a prescription for a back brace and it was custome made for me in alberta. I had it fit and if that helped allot then a fusion would probably help too.Very unusual surgery at thoracic spine. This surgery was very rarely done. I talked to three other surgeons they all said "no way not at the thoracic area"  The surgeons were scared of more surgery in the area. During the first surgery the surgeon cut a artery that runs up the length 0f the spine. This is now a concern with every other surgeon. Scare tissue and just the location didn't make me a good candadite for the fusion.
  Back home I was laying around in more pain. IT was not good. I would try and use Ice and heat. It just was nasty pain all the time. I tried everything and it just didn't work. In the mean time I was taking more drugs for pain. I also saw an eastern doctor. He just didn't want to try anything because it was too complicated. Or maybe he knew what he had to offer just wouldn't work! I also was trying acupucture. The muscles were so tight in my injury area that they could barely get the needle in.
  I went out to a rehab. place in calgary that was tied into my surgeon somehow. I think he owned the building. It was awkward for me there. There were physios, kiniseologist all kinds of rehab. people that were going to help me. If I stayed there a day it was a day too long. IT was so bias in favor of insurance companies and surgeons. It was little help. I did meet a doctor there that was willing to give me an injection into the area around the disc. It would give me some relief and if not I would certainly be sure that where he injected it was where I was hurt.  It  was a big needle that was incerted into my back while I was on my stomach. The needle was pushed in until the needle hit my vertabre and then it was slid along the vertibra and the contents of the needle released into my spinal area. The nurse looked at me and said allot of people have passed out from that. Now you tell me.  It definately was the right spot. A whole syringe was injected and It felt like the top of my head was going to come off.
  The same doctor was the first to sit down with me and say look you are not going to get much better from this condition. Man I hated to hear that. I was so upset when he told me that. I had a pretty good Idea that I may never get better but when I heard it from a doctor it was the worst news I could have gotten at the time. I spent a couple of weeks there and never really got much out of it.
  I was back home again doing the same thing looking for help. I searched hi and low for something that may help. I studied all I could about the injury. My pain doctor here suggested that I go to a pain clinic rehab center.  I agreed and I was off to Alberta. It was a three week program. By this time I was so drugged up and in so much pain I was desperate for help. I was so weak at this time I could barely stand up. I was wearing the back brace often because it help a little to provide stability in the area. The back brace was also weakening the muscles around my back. This is another reason I may feel so weak at the time.
  The first thing they tell you at the clinic is that you need to get off the pain killers. I agreed with them on this point. It would be hard to access a patient that has a back brace on and is on a tonne of pain killers.
  During my stay at the rehab facility I learned many coping skills that relate to chronic pain. These skills are very helpful if you can learn them. Some coping skills  you remember well and use all the time others you have to find again.
  I cannot remain seated at the computer any longer I must go lay down. One thing that happened to you today that was positive. Today I had alot of things go wrong. When I look back on the day it is difficult to think of positive!  I had a good talk with my doctor today. He had a positve out look on my pain pump and was sure that the doctor would find a dosage or a combination of drugs that would help my pain/quality of life. I look forward to my trip to see the doctor

Sunday, November 30, 2008

More pain talk. ouch !!

  Hi everyone. Hope this finds everyone as well as possible. I want to talk a little more about the beginning of my chronic pain again. I know I have not said it much but prevention is the best cure for chronic pain. Prevent having the surgery if you can. Prevent re-injury if you can. Most of all prevent the accident, which we feel powerless over. How can we prevent accidents ? Are some of us meant to have an accident, injury and the chronic pain we are left with?? I think there some things about personality that may add to the variables. I hope during the course of this blog that we can touch on everyone of those variable. I think that everything that I have talked about in regards to chronic pain has had elements of  variables in some way or another. 
  Like all surgeon they gave me a time frame. Time frame to fly home, a time frame to walk, stand, sit, etc. The one I find the most humorous is the time frame in which I was going to be better. LOL. Lets not take these things that seriously during ones illness and injury.  One thing I have read is allot of books and papers to do with chronic pain prevention and it's cure. It is just too much science for me and there are so many variables. We are all different. What works for me might not work for someone else. No, what I really should say is that chances are it won't work for someone else. So this is a sharing of information. Some things will fit some will not. IF you suffer in pain we have something in common. 
   I finally got to fly home. How nice do you think that was? Man if I only knew now what I knew then. I wouldn't have gotten on that plane in the first place.  Something to do with flying bothers me to this day. Whether it be turbulence or altitude it all has negative effect on my pain. It is so bad that I fly with oxygen. The reason is that I get so tight around my thoracic spine. IT is like a belt getting cinched up around tighter and tighter. I cannot take deep breaths of air when this happens. I start to get really sick on the plane after a while. On one trip we took a battery operated sensor. It measures the percentage of oxygen in the blood. When I am at my worst while flying I will drop down to 87 percent. That really isn't that healthy! Pain, spasms, aches all need a large amount of oxygen. This is why at pain clinics they teach you breathing techniques. Breathing techniques  can feed your hurting body as much oxygen as possible. It does help to relax the tension in a person's body. I start a breathe in and say out loud to myself. "in one two three hold" then hold your breath. The breath you take should come in to your lunges in a way that it expands your stomach. You hold your breath for a short time and then Say as you let your air out of your lunges "out two three four let go" as you say this let all the air out of your lunges completely. You have to stay focused on this exercise and expect sometimes up to ten minutes before you feel relaxed. IT is the best thing you can do to a hurting, stressed body.
  After I came back home it was the beginning of a long list of changes in my life. The changes are necessary and as people we do not want change. Believe me make the changes that are necessary. Try not to fight them. The sooner you make the necessary changes the better. Any necessary changes are good for everyone around you too. I don't mean throw in the towel either. I just mean look for the subtle changes.
  I was at home with no help. No one knew what was best for my condition. No one knew much about thoracic surgery. There was not allot of people that wanted to try anything, doing so usually ended in me suffering!  I would try. It was my only hope. I used  cross country ski poles for balance and I tried to walk a little everyday. One thing I had was a lot of determination but no direction. 
  I was in great amounts of pain. I patiently waited for the pain to settle. It seemed to drag me down to the floor, couch, or bed.  That was my new reality how to stay on my feet. I was seeing my doctor every two weeks. There was no change in my pain. Time seemed to drag on . The only thing the doctor could do was give me more pain killers. Of course I would agree. I just wanted some more quality of life. I had very young children at the time that I wanted to spent allot of time with. I could not drive myself to town to see the doctor. I had to get a ride or take a cab forty kilometers to town. 
  I live in a very small community with small community resources.  My family doctor changed my medication as much as he dared to try and find the best combination that would ease the pain even a little. It was a terrible time period of adjustment, terrible pain, depression and sickness.  I was nauseated every day. I took medication for that. It seemed I took medications to counter all the other medications I was on. My Doctor was excellent. He did as much research as he could on the medications offered for my pain and strengthening depression. We tried many combinations to get to the combinations that I take today. Please do not be afraid to research and make suggestions if you are able. I was very fortunate to have a nurse as a wife. She was very helpful as well. 
  I just could not accept this situation I was in. I had something different in mind. I settled in for the fight of my life. I took all things related to my injury as my job. I was very serious at beating it. I truly felt that I could. All this makes no difference to the power of pain. The pain I was in brought me to the bottom of hell itself. 
  I struggled for many months trying to get the help I needed. It is out there don't ever think that it isn't cause it is . You will find it in one form or another. DO not stop seeking help. My family doctor referred me to a pain doctor. A doctor that studied pain and ran a practice trying to help people in pain. He prescribed a medication to me that has helped more than any I have taken before or since. It is gabapentin. It slowed down my extreme nerve pain. My nerve pain is Similar to a dentist drill on a healthy tooth. The pain ran down my right side from my foot into my thoracic spine at  the surgery area then up into the side of my face. It sometimes came out my hands and feet.  The gabapentin slowed down the flow of that pain. It damned it up to pool then spill over to continue it's journey through my right side to pool again. It was so much better than traveling at the speed it did before. It was better when it slowed down the speed of travel and some of the intensity. This pain I was in was almost devine in a way that is hard to explain. My thoughts of it were if I have to suffer like this at the hands of God then there is something out there for me for going through it.   
  I was using massage as well at this time. Yet the over all  pain was still at an uncontrollable level. It was time to go see my surgeon to have a talk about what it could be and if there was any other options. I am guessing this was under a year into the recovery period. 
  I hope that this description does not bother the readers. I know there was a time where I could not read about other pain descriptions nor watch anything that would generate pain on T.V.  Sometimes it is just good to read a pain description that best matches one selves. I hope that this helps in a way to make people feel that it was not only yourself that has suffered in similar pain. This would be most helpful for people first starting out as a pain patient. 
  If you are new to pain please try and not concern yourself with deadlines at this point. You will hear allot about time lines. One timeline I didn't like to hear is that after so much time in pain it is then classed as chronic pain. I think it is six months after an injury that they consider you someone that is experiencing chronic pain. It is just a guideline and everyone is different right?
 Okay then. At this moment I am in allot of pain myself ! I will ask everyone my  usual question. What is the one thing that you can think of that was positive in your life lately.  For me I would say writing this blog is good for me mentally. Not physically of course. It seem to help me mentally to sit down and put my experience in print.  I encourage everyone to do the same. I am able to do it because I now have a laptop. This means I can lay down and keep on typing. A laptop offers much more opportunities for my to write or just spend time on the computer. Take care and we will continue later on. Talk to you later.

Saturday, November 29, 2008

Some more on the surgery

  I want to talk a little bit more about the surgery.  Refer to Tuesday where we left off.  I hope that this is not too hard to follow. It is easier for me to break up the information this way. That way I do not have to sit so long to finish the blogs.
  I ended up in the hospital in Calgary for five days after the surgery. I had the chest vacuum going, sucking surgical debris, blood and air out of my body cavity.  I had a catheter still in. I wanted to walk so badly. I felt that I was so sore from lying around. So Leanne and my mother helped me up and I started to walk. At first I was sure I felt a difference. I did notice I had foot pain right away. Leanne and I wrote it off as being pain from being so inactive. I was walking and that was better than before I arrived for surgery? I was very optimistic at this point. I was unable to walk far at all. It was funny having Leanne carry my blood bag from the chest tube and my mother carry my urine bag  to go walking. I had my intravenous  pole in my hand for support for walking. 
 What I didn't know at this point was .......everything.  I certainly didn't know anything about what they had used after the surgery for pain control . I still had my intravenous pain pump. I also still had my chest tube in. Another reason that the tube was in my chest was to suck out the air that was in the chest cavity. If the air was left in there it would push against my lung. I wouldn't be able to inflate the lung properly.  Leanne and I noticed that the chest tube was making a odd sucking noise. It wasn't sealing proper at the entrance hole to my chest. I was sucking air into my body cavity. I was filling up with air. Leanne called for the nurse to come and look at it. The nurse was kind enough to reseal the tube where it enters my chest. It has a gauze and Vaseline seal where the hose enters the body. I did suck in air because of the leak.  I felt as though I was drowning and not getting air with the lung on my right side where the tube entered my body. I had a funny bubble sensation and a pressure up under my neck. The surgeon was coming soon to pull the tube out and seal the hole. I was upset because I wanted all the air to be removed before he closed up the entrance wound in my side. He waited another day and came to pull the tube out. There were stitches in placed around the hole ready to pull tight when the tube was removed. It was a pull, out comes the tube and pull, close the hole. The surgeon told me then that the rest of the air and blood in the body cavity surrounding my lung would be absorbed by the body.
   I was able to use pain pump for pain control. They started to wean me off of the pump and get me ready to leave. The doctor came in and let me know that he will give me enough Tylenol #3 for pain control until I got home. We left the hospital with out a rehab. plan other than it I should be better in eight weeks ??  Leanne and I moved from the hospital and  stayed in a hotel. We had to stay in Calgary for another few days before I could fly. It was pure hell in that hotel room. I took my Tylenol 3 and took it on time every time. Pain Relief ? LOL that was crazy. This was hell. I think that all the anesthesia and numbing drugs they use before during and after surgery was wearing off. IT was hell pure hell. It was never ending, uncomfortable, steady pain. It was like I said HELL.
  Leanne ended up getting me better drugs for pain control. We came back home. My mother in law and a female handler we had stayed to look after dogs and son Ben and daughter Rachel while we were gone . God bless them for their help at our time of need. 
  I didn't know this at the time but my future would be more of the same PAIN for months and then for years and now I know for the rest of my life. 
 Be patient and I will carry on with the rest of the story that lead to me being in chronic pain for the rest of my life and how I cope with it. 
  OK People. Write down or think of something great that has happened to you today. I think that it is important to look for the small details in life that help us carry on. Today I woke up feeling more rested than I have for a while. Some pleasures or happiness in life count for big pleasures when you suffer from something chronic. Take care of yourself until next time by 4 now.

Thursday, November 27, 2008

It was a tough day

 My buddy just got out of knee surgery. The look on his face brought back some memories of the time I was just out of surgery.  I could feel it myself, I swear I felt the surgical pain as he would be feeling it. He is doing all the classic things after a surgery.
 1. not taking his medication for pain on a regular basis regardless of the pain level.
 2. He is moving to much and already went for a walk with his crutches. IT WAS TOO FAR
 3. spent too much time sitting with his leg down instead of elevated.
  These and other things that we are prone to do. We can't help it. We are bodies of movement. We want to move. It is really bad when you stay in good condition and suddenly you are told stop moving for X amount of time.  
  Pain Medication has such a bad stigma attached to it. He has the classic paranoia of getting addicted to the pain meds. He is trying to tough it out. Bad move. Don't let your pain get away on you. If u do it is hard to catch again. If you are having bad pain when you are resting remember how bad it will be when it Spikes. ouch ! 
  I admit even today it is hard to stay in a position that makes my back feel the best. Especially when company is around. I did however remind him that he had better lay down and put his leg up. I think that he feels better when he does that. 
  You just can't tell an active person to quit doing things right away. It is very hard to practice not doing things for the first while. Once you catch on to the cycle of spike pain and better pain you are so damn stir crazy that you over do it. 
  He is determined but so was I. This is not always a good thing. I asked him how long before he can walk around on it. He said the doctor told him he could start to put weight on it right away. I laughed because I was told all sorts of things as far as my recovery was concerned but only one thing was right. That is HOW do YOU feel. That is the only thing that is important. Not what the surgeon said. Of course the surgeon wants you to get better quick it looks good on them. This is not the way to go. You have to go with what your family doctor is saying and your own body says. Stick with that and you will do OK.
  I am leaving here on the 6th of Dec. I will be going down to Regina Sask. to see my implant clinic nurse and maybe Dr. Kumar himself.  I am not sure of what the process will be but it will be an adjustment of dose and maybe a change of cocktail of drug in the pump.  If anyone is interested in a video cassette of what Dr. Kumar does I would be happy to get it to you the best I can. This man is incredible at what he does. 
  The first time I saw the video I was in tears. It was the very first time that I had actually saw people that have the same things as I did. There was help available I was so happy. It was so emotional to see these people and to hear their stories that were so much like my own. 
  Dr. Kumar has a wide range of help available to chronic pain sufferers. There is a pain pump like the one that I have. It is implanted into my body and delivers a set amount of pain medication to a catheter that runs up my back internally to my spinal cord near the spot of my injury. The other is a deep brain implant. A probe is implanted into the brain where the pain relief center is. It electrically stimulates the area so the brain can release it's own pain killer to the body. Third is a Nero stimulator that is implanted along the spine. you can carry an external power panel that can be set for more or less shock. It is a minuscule amount of current that is delivered to the source of pain along the spinal column. This in turn makes the nerves and the brain think that the pain is actually shock sensation. 
 I got the pain pump because he felt that was best for me. I am getting excited to go out and get a little relief. 
  I will say good bye 4 today. 
 What thing good happened to you today. Think I know sometimes it is hard to think of something good in your life with so much pain. THINK> oh ya I was able to get out of the house and go visit with my friend today . It was the first time that he sat still enough for me to have a good visit. I wasn't always trying to catch up to him while he whizzed around.