Journal of a Survivor -- Living with Chronic Pain

Log #147 (Insurance Run Around)

2011-02-18T21:31:00.000-08:00

I've been having a rough couple of weeks physically. Mainly, because of a kidney stone that is taking it's dear sweet time coming out, but as always, I have to deal with the chronic pain in my legs.

I went in to see my Pain Management Doctor yesterday and he is nearly convinced, now that I've had so many epidurals and the fusion surgery, that my sciatic nerve is seriously and permanently damaged. This is not surprising to me, but it is a bummer to hear a doctor actually say this may be the case.

He suggested that I look into a spinal cord stimulator (SCS) to help manage my pain, but he said I should really research it first before deciding. I'm glad he told me to do the research. If I would have made my decision based on the DVD he gave me I would have jumped at the chance to have the stimulator implanted. The way it works is through wires attached to the nerves in the upper back that lead to the brain. The stimulator is implanted under the skin and it sends electrical signals through the nerves and confuses the brain into thinking there is less pain and in its place is a feeling of vibration in the pain areas.

After reading up on this I think I'll pass on this idea because the possible downside is to great. I have no problem with trying something as long as the result leaves me no worse off that I was before, but when the possibility exists that I could be in much more pain that is not reversible then I have to say no. Here is a link, in case you may be thinking about having this procedure done on yourself, to a forum with comments by those considering it or have already had it done. (healthcentral.com)

If I would have been dealing with this problem longer than I have then I might consider it, but at this point I will hold out for better technology.

I wanted to report that I won my Social Security Disability case. WOO WHO!!

On the other hand, my fight with Workmen's Compensation continues. They have finally agreed to let me get some therapy for depression, but they have to make everything so difficult. If I didn't have to deal with them, my depression would be much more manageable. These guys want me to travel 40 minutes each way at times that are inconvenient for me and they don't want to do anything about getting me there. They expect my wife to take time off work each week to drive me to the appointments. They know full well how I manage my pain and that I can't drive, but they still hold their ground. Remember, these are the same people who are supposed to be looking out for those who have been injured on the job. Dealing with them is like having a root canal done every day.
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Log #146 (An update)

2011-02-06T22:58:00.000-08:00

It's been a while since I posted something new, but I've been thinking about it for the last little while and thought it would be good to do an update...

First off I should say that there is no improvement in my back condition. It's been over a year since my back surgery and I think it's safe to say that it didn't do any good at all. I still have the same problems as before and, if anything, my back is slightly worse now.

I had three more epidural steroid injections into my sciatic nerves, but none of those helped and the last one I had actually made my left leg more numb than it was before. It's just too bad that the added numbness does nothing to take the sciatic pain away.

I have found cutting down on the Norco and using medical marijuana has been a lot better for my pain management. The only time I have to take Norco is if the pain goes beyond what the MJ can do for me. I've learned a lot about medical MJ over the last year. I use what is called a vaporizer (Iolite)to get the THC from the MJ into my system. This is a smokeless method wherein the MJ is heated in a small chamber until it starts to release the THC. I then inhale the vapor without all of the carcinogens and tar that comes along with smoking it. Also, my vaporizer is small enough that it can fit in my pocket and take it wherever I might need to go.

Not taking the opiates has had a very good effect on me. My moods are much more stable than before and I'm able to reason things in my mind better.

OFF THE SUBJECT...
Just for fun here is a little thing from JIB-JAB that my second oldest son clued me in on. I inserted some of our family face pics and it's pretty funny. The JIB-JAB site has a few of these you can play with.

Personalize funny videos and birthday eCards at JibJab!

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Log #145 (Busy Month)

2010-08-01T20:42:00.000-07:00

August is going to be a busy month for us so I'll be writing a lot less. We have a week long vacation, school is starting back up, cub scout and boy scout stuff, and my oldest daughter may be coming to visit next week.

I am ready for a good break from writing this blog for a while. The main thing is that I need to decide what direction I want to take this in the future. I went through some pretty tough times and it's all chronicled here for everyone to read. I underwent a big transformation as I passed from the clutches of narcotics to where I am now and that involved a great deal of stress. Writing helped me through it.

Now, I think it's time to do something different, but I'm not sure just what that is. Originally I'd said that I didn't want to make this a blog about using medical MJ, but I may want to focus on that a little more now that I have a better understanding of it. I may want to take a little more of a philosophical approach to my writing or even a more spiritual approach. I will take this next month to decide and in the mean time I'll write whenever I can to keep the ball rolling.

I'm open to suggestions if anyone has something they would like to know about.

Log #144 (Passing of Time)

2010-07-28T19:34:00.000-07:00

Finally got the Internet fixed. At least we think so. It's been 24 hours without any problems.

The summer is speeding by and it's hard to believe that August is almost here. Plus, it's almost two years since I finally had to stop working. Even after this amount of time I'm still not used to the idea of being home all day. I have my projects that I work on, but they are NOT a reflection of what my career was and that is weird for me. Even though I still interact with people on some levels, it isn't the same as sharing ideas, designing a product, and then watching it transform from an idea to a working piece of machinery.

Don't get me wrong, this isn't a bad thing now because I'm adjusting to it. I'm coming to grips with the idea that I'm entering a new stage of my life.

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Log #143 (Arrrrrggg!!!)

2010-07-26T20:10:00.000-07:00

Internet has been on and off every couple of minutes for the last week. AT&T will be out tomorrow afternoon to fix this stuff. They came out Saturday and didn't get it right so I hope they will this time. With this cutting out it's almost impossible to write a post.

At least I had a good pain day today!

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Log #142 (On the Edge)

2010-07-25T21:12:00.000-07:00

It was a rough weekend that ended on a good note. Chronic Pain can make it difficult to deal with other setbacks in life because it's easy to feel on the edge anyway. The trick is to analyze my feelings in the middle of those set backs and determine what emotions are driven by my pain and which ones are driven by the circumstance. That can make it extra hard, but it's what I need to do even if I have to take a little longer to process things.

Chronic Pain isn't a good excuse to let emotions run amok.

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Log #141 (Smell the Roses)

2010-07-22T20:58:00.000-07:00

Chronic Pain can be very overwhelming and it's far too easy to get wrapped up in misery. I think that makes it doubly important to make an effort to appreciate the world around us and get away from the isolation that pain brings.

It is totally understandable that a person with a ton of pain will do anything to avoid aggravating the pain more than what it is. Sometimes that means staying in bed all day. This leads to being closed off from the world and the only thing to look forward to is relief from the misery.

Even when I was at my worst and the pain meds were ruling my life, I still made it a point to get out and do things with my family even if I felt worse by doing it.

So what I want to say is that it's vital to remain a part of the world and appreciate everything it has to offer. "Smelling the roses" will bring joy and laughter to your life and in the process you'll feel better about your situation and cope with the pain more efficiently.

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Log #140 (Rebound)

2010-07-21T19:56:00.000-07:00

Today was still a little rough, especially when the afternoon rolled around, but emotionally I feel better than yesterday. So in a way, I'm rebounding from yesterday. A better attitude means greater ability to cope and today I needed a better attitude because my back hurts bad enough that I had to do something about the pain. Usually I wait to do whatever I need to for pain just before bed so I can sleep, but I needed to do something earlier in the evening. It's always a bummer when I have to do something during the day.

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Log #139 (Rough Day)

2010-07-20T20:33:00.000-07:00

This is one of the days when I'm not in the right mood for writing. My back is killing me at the moment and I didn't have a very good day. If I write I'll be too negative so it's best that I wait until tomorrow. I guess this is also an example of what it's like to deal with this stuff. Sometimes it feels like an impossibility to get into a good mood. I'll be better tomorrow.

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Log #138 (Internet Problems)

2010-07-19T20:45:00.000-07:00

We've been having problems with our Internet provider all day and I'm not going to be able to write much. I hope I can finish a sentence before it cuts out again.

I just wanted to say how grateful I am to have family and friends that love and support me. I've had some pretty tough bouts of depression because of all of this. Some of that depression was caused or magnified by the medications I was taking, but some of it would have happened anyway. I don't know how well I would be able to get through this without you. Each of you is a light in my life in your own unique way and your light shines at different times to give me hope and the desire to keep pushing myself onward. I know that your prayers on my behalf have been heard and they are felt in a powerful way.

Thank You ALL!!!!

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Log #137 (Spirituality)

2010-07-18T21:33:00.000-07:00

Chronic Pain and spirituality... Is there a connection?

Earlier I'd written that I wouldn't talk about any specific religion and I will stay true to that tonight, but I think there are some things worth mentioning and I'll try to be respectful of all religions while doing so.

I think it's safe to say that most people believe that there is some form of spirit within each of us. Most believe that when we die our spiritual journey doesn't end. To take it a step further most people believe that our spirits continue, in some way, to mature and grow in intelligence after death.

So if each of us posses a spirit then anything we do or experience in this life has either a positive or negative effect upon it.

How then does pain, chronic or otherwise, figure into the equation?

In my opinion, pain and suffering is an essential part of the human experience whether we like it or not. It takes the bitter to know the sweet. Through pain we are able to gain joy. That may sound like a crazy statement, but if you really think about it you'll realize it's true. Every good thing you have in your life was brought about through pain in some way. A child is born through a mother's pain and most mother's would consider their children a blessing. Freedom was paid for through pain. For Christians, their redemption was bought through the Savior's pain. Without sacrifice, which requires either mental or physical pain, there is no blessing.

When someone lives with chronic pain there are blessings to be had if the people involved will take the time to see them for what they are. The person with the pain learns what it is to be loved by those that care for them. Those who suffer with empathy for the afflicted learn the joys that come from service. Ultimately, even if it's hard to see the good that comes from suffering, there comes a time when we can look at the experience through hindsight and see that our lives are actually better because of it.

I honestly believe that I am becoming a better person because of the things I suffer. I also believe that my suffering will make my family stronger if I let it. A stronger family means a happier family. If my family is happier then I would be wrong to count my pain as a curse.

We choose our own blessings or good fortune by how we choose to live. If I choose to make pain my curse then that will be my reward. Even if it takes generations to finally realize that good came from the pain of a family member it will still come. For every action there is an equal and opposite reaction. Eventually, great pain is rewarded with great joy. It may be realized in this life, but if not here, then in some future place where our spirits continue forever.

Pain and spirituality go hand in hand just as joy and spirituality do. All of these things work together for our good and our eternal progression in the spirit world to come.

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Log #136 (Left vs. Right)

2010-07-15T20:39:00.000-07:00

I didn't sleep that great last night so today was a little rough. With less sleep I always have more problems with pain and today was no exception. My sciatica has been giving me fits all day and it hurt enough that when I tried to take a nap I couldn't sleep longer than a few minutes.

For some strange reason my right side is giving me more problems than the left. So much so that I am even having a hard time walking short distances. It doesn't take much for my leg to give out and it's quite painful.

We've got a busy weekend planned and it will be hard to manage my pain, but at least we'll be having some fun.

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Log #135 (Roles Reversed)

2010-07-14T21:43:00.000-07:00

Looks like the shoe is on the other foot...

My wife has been having problems with her knee that acts up when she is at rest or trying to sleep. It started as a once-in-a-while thing, but has gotten progressively worse over the last few weeks. So instead of her taking care of me, I'm doing what I can to take care of her. I'm hoping her problem is temporary because it is quite painful for her. She goes into the doctor tomorrow afternoon to see what's wrong.

In the mean time, I play down my pain so she doesn't feel bad about me doing things for her. She wouldn't be able to stop me anyway. I would give up my comfort for her any day and the fact that this may not last that long gives me a reason to do more than is called for.

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Log #134 (Jacuzzi Needed)

2010-07-13T22:01:00.000-07:00

I didn't realize how much benefit I was getting from the jacuzzi at the gym until they closed it down to do some kind of retrofit. It's been closed for over a week and reopens again in a few days and I'll be very glad when it does. I have had problems with fatigue since it was closed, which tells me that I was getting much more out of it than I thought.

When I have more fatigue I sleep less and I have more RLS. Tonight, for example, I've had RLS going for the last four hours and it's very annoying!!! I started taking Iron supplements a few weeks ago to help with the RLS and I have noticed small improvement, but not enough to get rid of it completely.

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Log #133 (Maze)

2010-07-12T20:23:00.000-07:00

It's always so fun talking to people who work for the Health Insurance Company... NOT!!!!

Today I contacted my health insurance company to try and match a Pain Management Doctor with a Outpatient Surgical Center that are both covered by my insurance plan. What should have been easy ended up being a journey through the maze of insurance double-talk. Every doctor I called, after getting a list of names from the insurance agent, didn't use a single Surgical Center that is covered by my insurance. So my theory about not being able to get my epidurals because of a crappy insurance company is true.

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Log #132 (Car Show)

2010-07-11T19:59:00.000-07:00

Last week was a rough one as far as pain is concerned, but I got through it and felt better just in time for the weekend.

Friday we got some stuff done early and decided to spend the day at the beach (Sycamore Cove). It's always nice to get out of the house, but it's even better to spend the day resting while listening to the sound of waves beating against the shore. The beach we go to has lots of trees and shade not too far from the water. It is absolutely beautiful there. I don't do anything except rest and watch the boys play while my wife and I talk or read. I'm usually in additional pain from riding in the car and the small walk to where we set up our stuff, but I take something for pain before we go and I'm not too bad.

Yesterday we went to see family that lives in Long Beach, CA. There was a car show down there and they invited us to come down and spend the day with them. Because of my pride, I don't like using my wheelchair so I decided to try walking as long as I could. MISTAKE!!! I didn't make it very far before my sciatic shut down my right leg and made it very difficult to walk. It was a good thing that my wife insisted on bringing my wheelchair because I wouldn't have made it back to the car without it. My wife and son had to walk back to the car and bring the wheelchair to where I waited. I ended up having to take some stuff to deal with the pain.

I made some cookies with medical MJ in them and I put one in my pocket before we left home. One cookie is pretty strong, but even that was not quite enough to knock the pain out completely. It did well enough to get me through until we got home.

The bright side was spending time with family and seeing the sights. I may not feel all that good when we are out, but at least we are doing things as a family.

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Log #131 (Thursdays)

2010-07-08T22:54:00.000-07:00

I like Thursdays because they are like Fridays for us. My wife works Sunday through Thursday so when Thursday rolls around we are all in a good mood knowing our weekend is about to start.

One thing is for sure, when a person is happy pain is easier to deal with and when a person is depressed it can be much more difficult. That is why it is so important to that I do my best to stay positive. Genetically I am predisposed to mild depression so it is a little easy for me to feel down and even more important for me to find ways to keep upbeat. I found that to be nearly impossible when I was taking all of the pain medications. On top of that, I had a ton of problems with mood swings and difficulty with stressful situations.

I've discovered that when I take a single Vicodin I find it more difficult to control my emotions. Maybe this is something that affects me more than others so I can't speak for everyone on this point, but I know that taking narcotics for pain actually made my pain more acute because I was more depressed and moody than I am normally. I think it's obvious from the way I write now compared to when I started this blog that I'm more positive now than I was then.

I wish I would have known going into all of this what that stuff (narcotic pain killers) was doing to me.

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Log #130 (Puzzles)

2010-07-07T20:33:00.000-07:00

I felt pretty good when I woke up today. It was a good pain day you might say. I took something for the pain before bed last night and slept okay and that was probably the biggest reason I felt better this morning.

My wife picked up a coca-cola puzzle (shown in the add) a few weeks ago from the store and we've been working on it as a family. It is one of the toughest puzzles I've ever worked on or seen so it has been slow going in putting it together. My back gets pretty sore when I sit in the dinning room chair so I usually don't work on it for very long, but today I stayed too long. The puzzle was at the point where it was close enough to being finished that I just couldn't leave it alone. Why I do such stupid things, I just don't know. Now my back is as sore as it was two days ago. Gee!!

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Log #129 (Cosmos)

2010-07-06T23:08:00.000-07:00

Maybe it's something in the cosmos or just my wife and I being in tune with each others moods, but neither of us had a fantastic day. She had a hard time at work and I had a hard time at home. On the positive side we get to console each other when days this happen.

My main issue today is the continued recovery from the weekend and not making much progress. Part of that stems from not taking anything for the pain yesterday and deciding that I wouldn't take anything before bed too. There are times when I will sacrifice sleep for the sake of a clear mind. Maybe this is my way of staying detoxified or maybe I'm just proving to myself that I have control over my actions and my pain doesn't.

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Log #128 (4th of July Weekend)

2010-07-05T20:42:00.000-07:00

I always love the 4th of July and not just because of the fireworks. For me, it is a time to reflect on the sacrifices that have been made on my behalf and for my freedom. My grandfather was also in the Marine Corps and he died in Okinawa when my mother was a year old. It amazes me how men such as him gave life and limb to protect our way of life and it amazes me even more how much has been forgotten by the younger generations. This is not a blog about such things so I will turn to the business at hand.

Part of the problem of chronic pain is that it becomes nearly impossible to lead a "normal" life. We wanted to do something with the time we had available this weekend so we took the boys to visit a local historical site. I knew it was going to be a challenge going in because it would require me to do some walking for the tour. I didn't count on just how difficult it would be. Needless to say, I didn't make it all the way through and I had to return to the car. I was in tons of pain and it took everything I had to keep my sanity until we got home so I could do something about it.

Yesterday, the 4th, I compounded my problems by taking my boys to see the fireworks while my wife was at work. We had to get to the park around 3:00pm in order to get a good spot plus we set up a canopy tent to provide some shade. Even though I wouldn't change a thing, it was still too much for me. By the time we got home, I could barely move. Any little movement was/is a killer.

It is almost like stepping back into those first few months after surgery. Getting out of bed is horrible; walking to the bathroom is horrible; doing nearly anything is horrible. It is spending time with my family that makes it all worth it.

Another reason to find joy in my family is that my second oldest son called this weekend and told us he's getting married. He will be my first child to get married and I couldn't be much happier because of it.

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Log #127 (Peace of Mind???)

2010-07-01T23:14:00.000-07:00

Not much to report today to end up this week with. The only thing on my mind right now is how stupid medical insurance companies can be. We go through a directory of Pain Management doctors provided by our medical insurance, we pick out one that accepts our insurance, and when he gets ready to schedule my epidurals the insurance company says that both of the out patient facilities that the doctor operates in is out-of-network. This same insurance said that the last pain management doctor I saw who wanted to do epidurals did his procedures in an out-of-network facility.

So what it looks like is that my wonderful medical insurance is willing to pay for a doctor visit, but if I need any kind of treatment it will not be covered unless the doctor does it right in his office. This is why I believe that most insurance companies are criminal organizations. They are supposed to give you peace of mind, but when it comes time for them to deliver they turn their backs on you.

By the way, in case you are curious... My current insurance is Cigna and the one we had before that was Aetna. Both are nothing but trouble and we can't do anything about it because that is what my wife gets through her work and we can't afford to pick an insurance company of our own.

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Log #126 (More Epidurals)

2010-06-30T20:37:00.000-07:00

Looks like I'm heading toward another round of epidurals (I had four injections before the surgery at this time last year). I went into my back doctor today so he could go over the results of my CT scan with me. It looks like I don't have anything obstructing my sciatic nerves anymore so he wants to try some anti-inflammatory injections into the nerves to see if that will relieve the pain now that the surgery has been done. This is kind of like the last hope. Because the nerves were pinched for so long (This is the fault of workman's compensation because they refuse to do anything), there is a good chance the nerves will never heal. So I get the epidurals and if they don't work then I just have to wait and see what time and healing can do for me. All I know is that I have not felt any positive benefit from the surgery--as it applies to my pain levels.

It's time to roll the dice again and hope that it pays off.

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Log #125 (Cabin Fever)

2010-06-29T23:12:00.000-07:00

Sometimes, when I think about my situation, I get the feeling that I should be doing more with my time. I have things I'd like to do and sometimes I feel like I may actually be able to do them, but when I can't I get a little frustrated. Being home all of the time is rough when I've spent most of my life spending large portions of the day outside of the house. In a small way I get cabin fever.

I'm glad I can get to the gym each day even though it ends up hurting a lot afterward.

This is one of the aspects of Chronic Pain that a lot of people don't get. Some people automatically assume that I'm home because I'm lazy and don't want to work. They think I use my condition as an excuse and that I couldn't be as bad as I say I am. Because of this, I usually don't like people knowing about my problems or that I'm home all day. I've come to terms with what I can and can't do, but I still have a hard time with not going to work everyday and how people perceive me.

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Log #124 (Down Day)

2010-06-28T18:40:00.000-07:00

I'm not sure what exactly I did today, but I'm in a lot of pain. I guess you can say this is a bad pain day.

Right after I finished swimming at the gym, my groin started to hurt really bad. When we got home I didn't do too much except make a doggy door in the sliding screen door to the back yard. This wasn't much of a project, but it's the only thing I can think of that made things worse. My groin was killing me all through, but I've been wanting to make this doggy door for quite some time--it needed to be done actually.

Anyway, afterward, I laid down for a while in bed and as I did so my back started hurting worse as well. Kind of like slowly turning up the volume on a radio; my back increased in pain. It was bad enough that I actually took a Norco and so far it hasn't done much. I have to drive my boys to and from swimming lessons this evening, which means that I have to wait until after I pick them up before I can seriously do something to ease the pain.

It's times like this where the clock seems to be moving backward and it feels like I'm waiting a million years to get relief.

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Log #123 (Routine Recipe)

2010-06-27T20:19:00.000-07:00

I read an article once about how poor sleep patterns lead to a shorter life expectancy. This is alarming to anyone who has trouble sleeping because of Chronic Pain or illness. One or two nights of poor sleep is one thing, but when it's a continual problem it's easy to see how the body stops working at peak levels.

Severe pain alters every aspect of a normal life, but I think the biggest impact it has on health is sleep. At some point the desire for sleep can outweigh the desire for pain relief. Another problem associated with this is sleeping at regular times and hours, which can be extremely difficult.

There are some things I've learned that help minimize some of these deficiencies and result in better sleep. Some of these ideas may work for you and others may not, but the important thing is to develop a routine.

Try going to bed close to the same time each evening.
Set a time for a "cool down" period before bed. A time to clear the mind and forget worries.
Decide to put all worries and concerns away until the next day.
Eliminate as much light and sound as is possible.
Listen to soothing music or sounds. Make sure the volume is very low so if you fall asleep with it on it won't disrupt your sleep.
Use whatever medication you might have to reduce the pain you experience while trying to sleep.
Find the most comfortable place and position to sleep in.

These last few weeks I've been sleeping much better, due in large part to the Medical MJ. I am able to use the MJ just before bed some nights and it takes away all of my pain while relaxing all of my muscles. This usually lasts through the night. The down side is that the most comfortable place for me to sleep is on the couch. I sleep on the couch until about 5:00am then I go back to bed so I won't be in the front room when the kids start getting up in the morning. My music of choice is ELO (Electric Light Orchestra). This has been one of my favorite groups since I was a young man and I find it some of the most soothing music.

PLEASE MAKE COMMENTS!!!! If you have similar experiences then please write them here. It may help someone else when you write your point of view. ANY comment, question, or suggestion is appreciated!!!