Log #78 (On Your Own)

With six hours of sleep total for the last two nights and all the pain I'm in because of that fricken Oxycontin, this is about all I'm going to write for tonight.

Last night I made the mistake of doing the MJ too late into the pain cycle and not enough to help.  It was two in the morning and I wasn't going to wake everyone up.

Good night.  I hope!!!

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Log #77 (Ox In The Mire)

Ox in the Mire
by P.S. Garrett

Sometimes I feel like an Ox in the Mire
Stuck in the mud; my bones afire
My mind and body against me conspire
Stuck in the mud; my sinews expire


Sometimes I feel like a dog in the street
Nowhere to run; no safe retreat
Pain from my crown down to my feet
Nowhere to run; my anguish complete


But mostly I feel like a man accursed
Chained in prison; in nightmare immersed
The darkness of agony alone traversed
Chained in prison; for relief I thirst

This is turning out to be a very painful night and I am consumed. I can't be positive every day. Especially when I am being attacked in such a horrific way by fibromyalgia. Man this sucks!!! It's nearly impossible to concentrate enough to write because of this excruciating insanity.

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!!!

Log #76 (It's All Timing)

Over all it's been a "good pain day" (as my Aunt Margo would say).

The withdrawals weren't so bad today and I hope I've turned the corner as far as that is concerned. It's been about 30 hours and counting since my last Oxycontin and I hope I don't have to take another one for a long time to come. Before I get to the main thing I want to write there is one more thing on this subject I should say. Even though I'm dropping the Oxycontin and Lyrica will follow soon after, I have to keep those prescriptions active. Medical MJ is the reason why I can get rid of those things, but if I ever go out of the state I can't take the MJ with me. That means I'll have to rely on my old medication once again while I travel. This can be a big problem for people who travel a lot, but right now I don't leave the city much less the state.

Okay... Now the subject that has been on my mind this evening...

Chronic Pain is like a bad house guest that you can't get rid of. It is an entity of it's own. Once it moves in you have to build your schedule around it. When you depend on medication to relieve pain or have to do enemas to go to the bathroom, it's hard to work around that. That stuff, for most people, isn't on a set schedule where you take your pills at a certain time during the day. On good days I can go longer between pain medication than I can on bad.

What this equates to is having things you plan for take a back seat to what the pain dictates. Some things get cancelled completely because of pain or the medication. This is difficult for everyone it touches.

Most of us want to live by routines because we don't like change. Most of us don't like negative surprises either. We build our lives around schedules; always somewhere to be and something to do. The problem with Chronic Pain is that it slows everything down and sometimes puts a stop to it all together.

Things that I used to do quickly, like rushing to answer the phone when it's left on the other side of the house, is now a difficult task. Sometimes I can't get to the phone before the person on the other end hangs up. Things that seem to take no thought start to require mental exertion. Things that were once easy for me to remember are now way to easy to forget.

The person with Chronic Pain is frustrated because the little things become difficult while those around that person are frustrated by not being able to do anything about it. I know it's a little too easy for me to get upset when things aren't going my way and I get irritable faster than I ever have in the past. I could take the easy way out and blame my getting irritable and upset on my pain or medications. That is part of the reason, but as long as I have rational thought I need to take responsibility for my moods and fight against my problems in a positive way.

The person with Chronic Pain should not expect everyone to know how the pain or the pills are affecting us; in reality they don't know very much. This means that the person with Chronic Pain needs to have compassion for those who are trying to help us and part of that compassion is trying not to pass our frustrations on to them. Half of the time I don't tell my wife and family what I'm dealing with because I don't want them to get sick of hearing it while not being able to do anything about it. I also don't want them to get overwhelmed with the enormity of what I feel. So when I'm frustrated and irritable I need to remind myself that they are not the real cause of my problem and I need to remind myself that they just don't know everything I'm facing both mentally and physically.

Severe depression, anxiety, and frustration plagues a lot of people with Chronic Pain so I really hope that the people who read this blog will see that both the afflicted and the caregiver need to strive to be more patient and communicate better with each other. This whole thing is hard enough as it is and no one should have to go through it alone because of unkind words or feelings.

Good night all!


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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!!!

Log #75 (Withdrawals)

The most annoying thing about any pain killing drug is that when their usefulness is over and it's time to run them out of town, they don't give up without a fight. Like the bad gunslinger in a cheap western, the pain killer has got to do everything to trouble the hero before he's shot down--dead in the dusty street.

Here is a link to Oxycontin withdrawal symptoms: The Gunslinger

It's a double edged sword taking pain killers; in one way they take away the pain, but over time they actually add to the pain. So you have to do what you can for relief knowing full well--if you have a good doctor that tells you--that somewhere down the road you'll HAVE to take more and more to get the same effect. Plus that adds to the amount work your body has to do to filter the stuff--all of which is synthetic.

The main thing is to deny the body what it craves for. As I cut back on the Oxycontin and the withdrawals hit, I have to push myself to go an hour further than I think I can handle and when I read that hour I have to try for one more. It is an immensely mental process--even more than a physical one. The addict may say differently, but it is the mind that controls our actions; the mind that chooses to give in. I refuse to let my body's craving to dictate what I do. I've gone from 3 x 20mg Oxycontin per day to one in the last 24 hours. To top that off, I was already limiting the amount I was taking to begin with. Even though I was taking the Oxycontin on a regular schedule it was not enough anymore to really be effective and I was experiencing some withdrawal symptoms when the stuff was waring off.

So I'm starting the medical MJ, but I still have to deal with pain associated with withdrawals. I may not know the full effect of MJ for a while down the road. I may also discover that as my tolerance levels for Oxycontin was going up, my resistance to fibromyalgia was going down. I hope that when the Oxycontin is completely out of my system maybe my fibromyalgia symptoms will decrease.

DIE OXYCONTIN!!! DIE!!!

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Log #74 (Good Night's Sleep)

The strain of medical MJ I'm using causes me to get very tired so if my pain gets bad during the day, and I use some, then a little while later it's hard to stay awake for the next three or four hours.

As you can guess, this is a good thing if I use the MJ just before bed, which is what I did last night. I slept very well. Probably the best night's sleep I've had in months! The effects last for about 6 to 8 hours depending on how much I inhale and last night that meant I slept for about 6 hours before I woke up for the first time. Awesome!

Once it wares off, the pain comes back pretty quick. Bummer! Especially, now that I'm going through withdrawals from the narcotics I've been using for so long.

I have to take the good with the bad until I get used to all of this. I can honestly say that I would give this up in a heart beat if there was something better to use for no other reason than I hate the high feeling I get. I feel like I'm walking through water.

There is another strain of medical MJ that doesn't make most people tired and I've heard that a lot of medical MJ users use both strains so that during the day they can do what they need to and at night they can sleep.

In any case, I have a lot less pain. I still feel pain and some times it's worse than others, but over all, I feel better.

That's it for tonight.

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!!!

Log #73 (Transition)

The transition from one type of drug to another one can be difficult if withdrawals are involved. I took one less Oxycontin today and I've got withdrawals already. It sucks really that we, who suffer already, have to suffer more when changing medications that are supposed to be helping us.

I won't go into detail about using marijuana because I don't want it to be a blog about using it. I also won't go into detail about how much I use until I have that part of it worked it.

What I can say for sure, was that I slept well last night and in a little nap today. I used some MJ this morning around 11:45am and probably used too much because I felt very out of it. I also felt a ton of anxiety, which I sometimes get from new medications when I'm not sure what to expect.

However, what I used has work for the pain better than anything else I've taken. I'm pretty much knocked out, but there is no pain; at least not until it started waring out and I started feeling withdrawals. Basically, using MJ once this morning has taken care of the whole day.

Right now I have a lot to deal with... pushing through the withdrawals while waiting for my wife to get home from work before I do anymore MJ. Once I use the MJ I get extremely tired and it's hard to write because all I want to do is sleep. Tonight, just before bed, I hope the MJ will take the edge off of the withdrawals and I'll be able to sleep okay.

I'll be able to write more as I get used to the MJ, but for now, I'm signing off. Good night.

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!!!

Log #72 (Hey Mannnnnnn)

I'd have to say, "I never thought in a million years..."

When I consider the things I've believed in for the majority of my life, it's hard to comprehend how I got to where I am; a kid who grew up hating marijuana because of what I saw it doing to my older siblings. They were old enough to be part of "Free Love" and I was young enough to be a part of "Just Say No."

So looking at my original statement about a million years, I guess it must be one million and two because I'm typing my blog after using medical marijuana for the first time.

I live in a state where medical marijuana is legal and I've never been opposed to anyone using it. What bugs me is the ease at which medical marijuana is available to just about anyone. It takes people abusing things to really screw things up for the people who are doing it for the right reasons and what ends up happening is the rest of the world looks at medical marijuana as just another code for lets get high.

Today my wife and I went to a dispensary for medical marijuana--an establishment where the employees can't fathom the idea that there are people in the world who know absolutely nothing about smoking MJ. I was like a caveman among Einstein's.

The dispensary, I must point out, was a very clean, neat, and professional business. It wasn't at all what I was expecting. First of all a person can't just walk in and start browsing. There was a security guard at the entrance and he made sure that people had the proper MJ cards and photo ID. If they don't have them then they can't get in. Once cleared, I was able to go into the room where everything is on display. It was very "clinical" looking, and the people working there where clean-cut, well-dressed individuals. They asked me what medical problems I had then they showed me which types/strains worked best for those problems. They recommended one to me and I decided to give it a try.

After we left there, we went to a smoke shop and they explained the different things you could use to smoke the stuff. We settled on something inexpensive because we weren't sure if I'd get any benefit from marijuana. Once again, it was a place where none of the employees looked like they were high out of their minds.

The decision to actually "light up" was very difficult. Originally, I'd planned to smoke the MJ around eight in the evening, but it took me three additional hours to come to terms with actually doing it. I finally told myself that if I really wanted to find the best way to relieve my pain then I had no other choice. The rest, as they say, is history.

So far it's been a little over an hour and I feel the effects to both the pain and my body. I would say, initially, I feel a lot less pain, but my assessment will have to wait until another time after I've had enough time to test it.

Good night.

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!!!

Log #71 (Wow! Complicated)

I actually feel pretty horrible right now so I won't write very much. I've been sitting on hard chairs a lot today and sitting up most of the day in general so I'm in enough pain that even a handful pills wouldn't do squat.

One session of sitting on hard chairs was at the doctor's office where I went to get my medical marijuana card. It wasn't too difficult to get. The doctor looked over the medical records and my prescriptions and I was all set with my card, but I have no idea what to do next. Everyone in the office acted as if my wife and I should know all of the industry terminology... As if it were a language we'd been taught since birth.

After talking to the doctor's assistant, my wife and I came away confused and amazed at the same time. The medical marijuana industry is actually very complicated. There are all these different strains of marijuana and each one helps with different medical conditions. There are a billion different ways to get the THC from the marijuana into your system. And if you grow your own there is a whole science to that as well.

Tomorrow my wife and I will drive to one of the places where they legally sell the medical marijuana and I'll have to dive into that ocean, head first, and try to tread water long enough to find my way to the shore.

Good night everyone!


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!!!

Log #70 (Parenting In Pain)

Some people might say that parenting is a pain, but parenting with pain is a totally different story with totally different challenges. My chronic pain has changed my relationship with my children and in some ways it's been good and in other ways not so good.

No matter how long you're a parent or how many kids you have, you'll never be a perfect parent. A sad part of being a parent is--as you get older--you can look back and see mistakes you've made. I regret some of the things I've put my kids through as a father, but since I didn't know any better the only thing I can do about it is learn from it and try not to make those mistakes with my younger children.

Sometimes older children look at the way you treat their younger siblings and think that you're spoiling them or not disciplining them as much. In a lot of ways that is true because, as a parent, you are taking what you've learned and are now applying it to the younger ones. It really sucks that the older children end up being like crash test dummies and the younger ones get to drive the road tested car.

Even under these conditions we're still learning with the younger ones, after all, no two are exactly alike. Just to clarify my family dynamic... I have three children from a prior marriage and they are now grown and live away from home. I was married at the age of 17 just a few months before my oldest was born. At the age of 22 I found myself divorced with two additional children to take care of. Being a kid--who thought he was a man--married to a girl who was not yet a woman was a recipe for disaster. Neither of us knew who we were, what we were capable of, or what we really wanted out of life. When we divorced I had full custody of my three oldest. I was a kid raising kids and making tons of mistakes.

My two younger children came after I remarried almost nine years later so the younger two have benefited from a lot of growing up on my part.

Having chronic pain has taught me a different aspect of being a parent and it's revealed a general flaw in my earlier approach. I used to think that being a good father meant that I did fun things with my kids like go to amusement parks, museums, science exhibits, sporting events, or out appreciating nature. When I had free time on a weekend I was always trying to load everyone up in the car to go somewhere. While this is a very valuable part of parenting because it teaches kids to value the world around them, I assumed that doing those things would be enough to show them that I loved them.

It is hard to break old habits especially when you don't see that there is a problem with it. The real problem with the way I did things was that I didn't spend enough individual time with my children. With my older kids I instinctively started to seek more individual time with them as I saw some of the problems they were facing as teenagers, but it was too little too late. They were accustomed to working on their personal issues by themselves to some extent and my efforts to get closer made me look too controlling. They were not used to bringing me their personal problems so we could work on them together.

Now that I'm stuck at home, I see a very different side of my children's lives. Before, when I was going to college, working, or just doing my own thing to cope with life, I saw very little of what happened when I wasn't around. When I was around, the things we did together didn't show me what they were or what their problems were because we were too busy doing rather than talking.

These last few years, being at home all the time, especially during school breaks and summer time, I am with my two youngest 24/7 so I notice their moods more. I can see when something is wrong that we should talk about. Whereas before I wouldn't have noticed a thing. I talk with my younger children more when we are building a model together or when I'm helping them with school work. This change in my time getting to know them better may have completely changed my eleven-year-old's academic future, which would not have happened if I were still working.

My eleven-year-old has struggled in school since first grade and some of it may have been attributed to A.D.D., but now I think it wasn't that completely. Fifth grade was probably his worst year ever. Getting him to do homework was almost impossible and he would constantly let his mind wander. I know that we wasn't feeling like he was very intelligent and that made him give up easy on projects. Math was his absolute worst subject and getting him to do that was worse than camping out under a buffalo with diarrhea. I have to be honest that I was worried to the point of tears that he would not find a place in society when he was older.

Going into this last summer he was in danger of being held back because of his performance, particularly in math. I already knew that I was going to do things differently that summer. Instead of letting them have a vacation surrounding video games, friends, or hanging out at the swimming pool, I decided that things had to be done differently or he would not make it through the first few months of sixth grade. I was determined it wouldn't be another mindless summer where he forgot everything he'd learned the year before and spend the whole year trying to catch up.

I planned a lot of things and when push came to shove there wasn't enough time. I wanted to work on building model ships together so that I could explain some history and engineering ideas. I wanted to get them familiar with a different language. There would be time spent reading. We would do some art projects so I could teach them things about drawing. The most important thing was to get a fifth grade level math book and have my son do math all summer.

We spent a lot of time doing math. Sometimes a couple of hours a day because he was so slow at it. What started out as a potential nightmare slowly evolved into something else. As I spent time with him doing the math (or any of the other projects) we talked about what he was doing and how it applied to the real world. When he faced a problem in math that he had a hard time with I would explain different ways for him to remember the steps to problem solving. I never did any of his problems for him and when I found a mistake I would ask questions about what he did until he could see for himself, without me telling him, what he'd done wrong.

As the summer passed he gained confidence in himself and his mistakes became fewer and fewer. I think the thing that made the most difference was that I always demonstrated full confidence in his ability to do the work and when he did something wrong I made it process of discovery instead of ridicule. Being there with him every day, I learned what he responded to and what he didn't. I learned a lot about building his confidence.

This year we have seen a complete change in him and never once have we had a problem with him and his homework. He went from almost being held back last year to being an honor student this year. His worst subject last year that he absolutely hated was math and this year his best subject that he says he now loves is math. He doesn't feel dumb anymore!!!

None of this would have happened if I were still able to work. I really hate not being able to do the fun things we once did, but when I see these positive changes in my youngest boys, I think what I have is better now. I miss my career and working every day. I miss it like crazy. I hate the pain I'm in and never having a break. If these trials I face leaving stranded at home and in agony yet it brings out the best in my sons then it's worth it and I wouldn't change a thing. My pain and inability to work has led to me spending time with my sons and that time has changed their lives in a good way. I know they miss the outings, but when it comes down to it, they are much happier and more confident in themselves without them.



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!!!

Log #69 (Hallelujah!!!)

Hallelujah! Hallelujah! Hallelujah!
Praise the Lord! Sacrifice the fatted calf! Prepare the feast! Gather the family around! Alert the press! Bow down and give thanks!

Oh how wonderful it is to have a normal bowel movement!

Yes, you heard me right... a bowel movement!

It's amazing how blessed I can feel for such a natural, every day, thing.

It's easy to take for granted so many things in our lives and I think one of the many positive things that comes from the situation I'm in is that--when I'm not feeling sorry for myself--the little things mean so much more for me.

Tonight, as my two boys were beginning to do the dishes, I looked at them and felt such gratitude for the way they handle all of this and I had to go up to them, hug them, and tell them how much I love them. In the morning before they go to school we say a prayer together and this morning I was so tired when they came into my room that I was barely able to open my eyes. I asked one of them to say the prayer and in the middle of it I think I fell asleep. They didn't laugh or make a big deal about it at all. They know I have a hard time sleeping and they are so good at keeping things quiet. If I wasn't in so much pain and disabled, I may not have noticed as much how much they love me.

Why do bad things happen to good people? Why do bad things happen to innocent people?

These are the same questions that humans have asked from the beginning. It seems like everyday there are disasters throughout the world. News reports show starving children who suffer because of evil dictators. In war, the innocent are killed in the crossfire of the combating armies. Then there the people who have given their time and lives for the communities they live in and then they get and die from horrible diseases. Good people losing their homes in the economic chaos. These and so many other things that are as numerous as the stars in the sky.

We ask... Why does this have to happen?

Some say it is God cursing people for something terrible they've done. Some say that it's proof that there is no God.

It all boils down to needing a reason why, or an explanation for, the calamities around us. We want to believe that there is a purpose in all of this. Even the person who says it's proof there is no God is assigning the reason for things as "proof." If there is no reason behind all of this suffering it leaves us with a sense of hopelessness. We want to classify and order things because the alternative is too scary.

Why can't we look at these terrible events and compare them to our own lives and see just how good we have it? Why do we have to assign the blame to something or someone and then forget about it without taking the time think about how we would feel--personally--if we were thrust into that situation?

When we have someone or something to blame then responsibility for the chaos is put upon that person or thing and we are able to walk away without feeling any need to do anything about it. It all becomes their problem, not ours.

If there is something to be gained from all of this--it doesn't matter if it's God's will or pure chance--when hardships strike at the good and innocent, the weak and pure, we should look within ourselves and measure just how many good things we have around us and find joy in that. While we truly examine how good we have it, we will feel more compassion for the stricken, our hearts will be changed and our desires will become less selfish, and more importantly we will be moved into action to do something to ease the suffering of the afflicted.

What one person suffers from, you may someday suffer yourself.
The disaster that strikes there, may someday strike here.
The innocent killed there, may someday be killed here.
Whatever calamity that befalls another may one day befall you.

When you are on the losing side of things you will cry and moan because you are misunderstood. You will weep and wail because no one will help you. When you lose everything you have you'll scream and yell because no one will assist you. Believe me, I know this will happen, because I'm on the suffering side of the coin and I know what both sides look like. When you're on the good side you have the ability and resources to do something for those who don't, but unfortunately we refuse to take a roll in their suffering because it takes too much of our time or keeps us from getting what we want--from acquiring things.

I am grateful I had a bowel movement today without having to do an enema. Can you believe that?

Do you think that before all of this happened to me I even considered what someone else with these problems was really going through? Sure I felt bad for them and maybe sometimes I tried to do something good for them, but did I ever really try to put myself in their place so I could try and understand how much they were suffering? NO!

All I ask now of everyone who reads this entry is to think of someone you know or something bad that happened to someone you heard about in the news. Try to imagine what you would feel like if those things had happened to you. Try to picture how difficult the task is that they have to face and then think of how you would handle those tasks if you were in their place. Really consider the difficulty that living in this world has dropped in their lap and then do something about it.

Don't just think about what you would like to do, but really do it. Do whatever you are capable of doing for that person or those people. Give just a little bit of your time or your money or your talents to do something that will help those that are suffering now, or will suffer in the future. Do it today! Do it before you find yourself in their position and wondering why no one will help you!

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!!!

Log #68 (Taking a Leap)

Well... I set up an appointment this Friday to meet with the Doctor who can issue a medical marijuana card. I really can't believe that I'm going down this avenue after the views I've had on marijuana my entire life. I've never had a gripe about anyone using it for medical reasons, but I used to think that it's use was limited to cancer patients.

I grew up in a family where my older brother left home in his teens because he was involved with marijuana. That was in the early 1970's. Around that same time my oldest sister was having drug problems too. I saw a lot of things as a six year old that I probably never should have seen and that is a big reason--outside of my religious beliefs--why the use of drugs has always made me cringe.

I won't judge anyone for their beliefs, but I do have to draw the line at drug abuse. It ruins people's lives and in some cases it's impossible to escape its permanent detrimental effects. I've seen what drug abuse has done to family members and very close friends. Being there to help pick up the pieces of broken lives they leave in their wake has been a heart wrenching thing to be a part of.

In the past I've been in the camp that believes that most people on medical marijuana probably don't need it and shouldn't have access to it because they're probably abusing it. I can't say that my views have changed drastically, but I can say that my experiences have brought me in contact with a whole group of society that I didn't know existed and if medical marijuana will improve their quality of life then I am all for it. In a lot of ways I'm being a hypocrite because now that I'm on the other side of the coin I get upset how people will view me if I end up using it.

There is no guarantee this stuff will work for me, but given all I've been through, I have to find something better. The opiates I take do all kinds of damage to the body after long term use. The side effects are hell and as tolerance builds up it takes more and more to give the same relief. There is something natural--marijuana--out there that has the same effect on pain, but not the body. This plant was put on the earth for a reason and it's been used for the treatment of pain for thousands of years so I have to give it a shot regardless of what people think.

The negative stigma on marijuana is a fairly recent thing that stems from the "Hippie" generation. As in all things, it is the abuse of something by a few that cause the rest of the legitimate users to suffer.

The way I see it... Lyrica helps and I know that for 100% sure, but not enough so the logical option is to take more Lyrica. Taking more Lyrica causes me to have some slight uncontrollable muscle twitching and increased tiredness, which may not increase if the fibromyalgia is completely responsible for my tireness and not the Lyrica.

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!!!

Log #67 (I'm So Sleepy!)

Remember those times when you stayed up too late with your friends talking until the sun came up?  Or maybe not quite that late, but still very late.   Remember how tired you felt when you finally decided it was time to get some sleep; how weighed down your body felt.

Now contrast that with how energized you felt after having a solid night of sleep; how you felt like you could run a marathon and not be tired.

Now combine the two where you get eight hours of sleep (all be it interuppted), but when you get up you still feel like you haven't slept at all.

Of all the many things I'm going through, this is

 one of them.  Now you may say, "Well, if he were more active he wouldn't feel that way."  I'll admit that when you are in good shape and your body is healthy, you can get less sleep than you should and still feel energized, but I'm even more tired after being active.  No matter what I do, I feel tired.  Some of that is attributed to the medication, but medication wears off and my tiredness doesn't.

There are times when I just can't stay awake another minute and so I take a nap.  Within minutes I'm in a deep and heavy sleep.  An hour or two later when I wake up, I'm still so tired it feels like I'm in a stuper and looking at the world through a long dark tube.  I should feel refreshed in some way, but I don't.  This too, I've had a problem with for quite some time, but there has always been a long while between episodes.  Now it's becoming more of a problem and I think the medications I take for the pain plus the Lyrica are turning a small problem into a bigger one.


Here is a little write up about this aspect of fibromyalgia:


Tiredness

It’s common for people with fibromyalgia to feel extremely tired.  You may have been diagnosed with chronic fatigue syndrome. There’s a lot of cross-over between the two conditions and many people have both.1

You may feel very tired after doing an activity, for example, chores or sports. Or you may suddenly feel tired for no reason at all. People with fibromyalgia often say they feel very tired when they wake up, as if they’d had no benefit from their sleep. Unrefreshing sleep is common for people with fibromyalgia.

Feeling very tired can be extremely frustrating. People with fibromyalgia say they find it hard to plan their day, because they don’t know if they’ll have the energy to carry out their plans. Or they have to choose between activities, because they know they won’t have the energy to do more than one.2 

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Log #66 (Doesn't Matter Much)

It doesn't really matter to me what doctors call it.  Low testosterone or fibromyalgia or both.  The truth is that I'm in pain and the name for it isn't as important as the cure or the remedy for it.

Right now I'm in the middle of it with the pain, fatique, and everything else.  Instead of writing I'm probably going to soak in a hot bath and hope for some relief.

When I was at the doctor's office he said my groin pain my be attributed to something called: Genitofemoral Neuralgia

On the picture above, the genital branch is where I feel the most pain and that is where the doctor wants to do the nerve block.

Sorry!  This is all I can handle tonight.

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Log #65 (Here We Go Again)

For the most part it was a tolerable day early on. My groin has been the worst problem for me since Thursday, but I got better than usual sleep last night after taking some Ambian before going to bed.

Yesterday, with the comments the doctor made, I left the office not knowing what I should do about continuing with Lyrica. He wouldn't say either way if I should keep taking it or not because I couldn't really tell him if it was doing me any good. I was feeling better up until a few weeks ago when I wrestled the angel of death (fibromyalgia) in the middle of the night. After that... I just wasn't sure.

Well, since I couldn't get a feel for what the doctor wanted to do except get a blood test for hormone levels before he could commit to the idea I have fibromyalgia, my wife and I talked about it and I decided to taper off the Lyrica. For the time being, I will continue to think I have fibro until I'm told otherwise. The number of symptoms I've had for years just add up too much and point in that direction. Maybe my testosterone levels are lower because of the pain meds and that is causing it's own set of problems, but a lot of the things I've felt over the last ten years or more have nothing to do with testosterone levels. If I've had low testosterone for all this time, then heaven help my wife when my levels are normal.

After my surgery I took Lyrica for a month and like I wrote before, I didn't know why I was taking it then. The only opinion I had of the medicine then was that the withdrawals from it were horrible. The doctor thought was strange because Lyrica isn't supposed to have withdrawal symptoms. The only thing I could say positive about it was that I slept better while taking it.

Now that I can objectively look back with the perspective I have now, the withdrawals weren't that at all... What I was feeling was the intensity of the fibro after not having it for a while, or so I think. It seems to be confirmed today because this morning I skipped my first dose and by early this evening I started feeling like crap. Around 5:00pm I started getting that really weird feeling in the pit of my lower back, which is where the "attacks" usually start. From there it spreads until I feel aches all over my body, especially in my upper arms.  Now it's late in the evening/early morning hours and I hurt all over with a terrible headache and I'm hoping it goes away soon without getting any worse.

Now that I'm thinking about it I want to make a comment about how this is not a problem that's reared it's wicked head only after the onset of my back problems and taking the pain medications. This weird feeling that starts in my low back has been driving me nuts for years. Literally speaking. Whenever it would happen and I would feel it spread up my back to the base of my skull and bleed through my scalp, I thought I was going crazy. Seriously and utterly crazy. I thought this was the first signs I was going bonkers and I was too afraid to say anything about it to anyone, including my wife.

I have complained about feeling sick and having that ache all over my body, thinking I was coming down with a cold. I can't even count how many times I said this kind of thing to my wife and then never actually got a cold. Sometimes I'd feel that way in the morning, but by lunch I felt okay and didn't say a word about it. Why should I? I thought I was escaping a cold. How could I know it was really something else?

One thing I never wanted to be called was a hypochondriac. That is a word I totally hate because when you know you're feeling stuff and people look at you like, "No way. You can't be sick. There's nothing wrong with you." Eventually I stopped telling people half of the things I felt because I didn't want to be a crazy hypochondriac. Now it almost makes me mad to think that I punished myself for feeling things that couldn't be explained and for being crazy. Now that I know there was something to this all along, and the looks I received when I DID complain, I makes me angry that I let people make me feel like an idiot.

I feel really sorry for all those people through out history who have felt legitimate illness and pain and have been labeled with mental problems by those who were too ignorant to believe what the sufferers were going through. I doesn't appear that anyone has learned from history because there still isn't enough information out there for people to think any differently. It sucks that people have to suffer in silence for fear of being labeled!

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Log #64 (The right PM Doc?)

I had a pretty rough night last night and day today. With all of the movement yesterday, my groin pain slowly built up through the day until last night I had a hard time sleeping. Then all day today, it has been very painful. I'm reaching the point where I can't keep my eyes open.

Today I went to see the pain management doctor instead of his assistant. After waiting for an eternity, he came into the examination room and started asking a lot of questions about my medical history and the history of my pains. Over all I was impressed with the way he handled everything.

He brought up some interesting things about low testosterone levels in a man's body can cause symptoms similar to Fibromyalgia such as the tiredness and muscle soreness. It doesn't explain all of my symptoms, but he'd like to have me take a blood test to see what my levels are. If it turns out the levels are low then I'll have to get some replacement hormones to see how much I improve if at all. Interestingly he said the narcotic medications used for pain will sometimes cause testosterone levels to drop.

He checked the nerves around my groin and came up with the possibility of some type of nerve neauropathy in the affected area. After the testosterone test, he'll do some nerve blocks directly into that area and see if the pain goes away any. I'll make a note of the medical terms he used with explanations tomorrow evening.

We also talked about medical marijuana and he was all for it as long as it isn't abused. His view was that he doesn't trust synthetic medication and that going natural is better.

I'll wait until after I have the testosterone test before I'll go in to the doctor that issues medical MJ. I'll try it for a few months and see if there is any improvement.

I am nodding off and hitting the wrong keys or holding keys down and then waking up to a mess on my screen. This is a good sign that my body has had enough. Good night.

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Log #63 (Physical Therapy)

I had no time to draw the comic today that I wanted to. This day went by way too fast!

Last night was a rough night for sleep and I supposed to go to the gym at 9:00am to meet with a trainer and go over exercises to strengthen my core muscles so there isn't so much stress on my back. I just couldn't get out of bed in time to make it so I rescheduled to 11:00am.

My health insurance wanted us to pay a huge deductible for me to go to prescribed physical therapy. I've been doing that stuff for four years so I know quite well what they will have me do and there is no use forking out that money for 6 visits. PT is needed and there is no getting around it, but if I already know all of the exercises in the clinic and the pool then I might as well continue to do those things on my own and save the money.

In this case we decided to use the money and get memberships at Gold's Gym. They have a great facility and a ton of equipment with a pool and spa outside. As part of the membership they gave me a free session with a trainer who used to be a physical therapist. This guy knew his stuff!!! Plus the tools they have on hand to help customize a workout specifically for each individual is awesome!

The exercises the trainer showed me and had me do are all geared toward keeping my back isolated from pain while I workout. The equipment can build my abs, upper body, and legs in a way that my muscles can take some of the strain off of my lower back. On the plus side, I get the cardio I've been hungry for and the weight loss that I wanted to continue with. I got on the scale while I was there and I've lost over 40lbs from my heaviest weight, which I was at about three years ago. I gained twenty of that back last year and then lost that same twenty since surgery and I have intention of ever seeing it come back.

Finally, there is a benefit from exercising on my fibromyalgia as well. Light exercise loosens the joins and muscles, which end up relieving some of the pain--not all, but some.

I continue to read, "Fibromyalgia for Dummies." The more I read the more I see how long I've had this condition without knowing it. I go to the doctor about such and such problem and they give me pills. I have other such and such problems, but I live with it and don't go to the doctor--I'm so sick of taking pills. Other problems I see other doctors for (like my groin pain) and they don't know what to do about it. After reading the book (what I've read so far), it's like putting together a puzzle and finally seeing what the picture looks like. If you have fibro or know someone who does, you really should purchase this book. I feel so strongly about it that I'm going to add a permanent link on each blog page.

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Log #62 (Comic #1)

The government and insurance agencies that are meant to protect us have different agendas these days. The insurance companies have to deny claims in order to keep premiums allocated to profits and big bonuses. The government has to deny Social Security Disability claims so they can use the money to fund their pork belly projects and their non-taxable retirement.

Neither entity has any empathy with the injured and disabled.

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Log #61 (City Council)

I'm keeping it light tonight. Starting tomorrow I'm going to post some of my own cartoons that I've drawn to show my opinion on some different subjects. I'll be doing that instead of lengthy blogs for 3 or 4 days just to mix things up for myself and in the process maybe I'll get lucky and make someone laugh.

Last Friday I called the City of Simi Valley to ask/demand that something be done about Handicap access at the little league ball parks. I was directed to some one's voicemail so I left a message stating that something needed to be done and soon or I would get a lawyer and sue the city.

The parking there is horrible to begin with and sometimes you have to park way down the street and hike it to the ball field with all your gear. One of the fields sits on top of a small hill and to get to the bleacher area you have to walk up a rise that is covered in grass. There is cement surrounding the bleachers, which is nice, but to get there a person in a wheel chair would have serious problems.

The other two fields that have approaches that are a lot more level, but you still have to make your way across the grass to the bleacher area. While I don't need a wheel chair if I only walk a short distance, I know it's a pain in the butt for those that do. Even if they could get to the fields, there's still no place to park and unload a chair.

This afternoon someone from the Parks and Recreation Division called and asked a bunch of questions and when he was done he said they would get started on making changes. Of course that means they have to get funds appropriated, assign the project to a planner, get funds appropriated, get a civil engineer involved, get funds appropriated, do an environmental study, get funds appropriated, get the work crews assembled, get funds appropriated, send the crews out to the site, conduct and investigation into misappropriation of funds, put the project planner in jail, then scrap the project until I get a lawyer and sue them in court.

I'm sure on the city level it won't be THAT bad, but the way things are these days and the rough economy I'm sure it won't happen over night. I do believe that it's not that difficult to get some blue paint and mark some handicap parking spots with some signs to go along with it so if I don't see any progress in a couple of weeks then I'll contact our lawyer and ask him to send them a threatening letter.

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Log #60 (My Personal Angel)

I can see way some people using Lyrica gain a lot of weight. Dang! It's like being hungry 24/7!!

I have gone from having low apatite to full on ravenous hunger. I am weight conscious so I have to put off the urge and go hungry most of the day. I've been eating smaller portions when my appetite was lower so my stomach shrank. Now when I eat, I get full with the small portion like before, but 15 minutes after I'm done I start getting hungry again.

So lets see here... Little to no sex drive... Constant hunger... almost no improvement in the fibromyalgia symptoms... Why am I taking Lyrica again? Just more reasons why I should change to something else.

The main reason for keeping a daily log of pain is to catalog what each day is like for me so I'm obligated to say something along those lines without making it boring for you, the reader. Except for the fibromyalgia, each day is pretty much the same as far as the type of pain is concerned. What changes is the level. For example: I have nerve pain in my groin and legs every day, but one day I may be able to get up and help with the laundry where the next it almost hurts to much to get out of bed.

I have an Aunt that has a lot of back problems and has has numerous back surgeries. She stated it well in one of her emails when she said she has two types of days; good pain days and bad pain days. That pretty much sums it up. The pain is always there. It's there when I stand. It's there when I sit. It's there when I walk. It's there when I lay down. It's there every waking moment and it's there when I try to sleep. The only change is how much I have to cope with.

What I would really like to talk about tonight is related to my pain, but is related to easing it rather than contributing to it... My wife.

I can honestly say that all of the women I've had relationships with and that I am generally attracted to are very caring women. Their eyes reflect what is in their soul and that is a desire to take care of other people. So it is no wonder that from the moment I first saw my wife before we met I just knew that she had a kind heart and was a nurturer. It amazes me how much she exceeded my expectations though.

She works at a home for Alzheimer and dementia patients and she spends all day seeing that the get their showers or baths, get dressed and fed, and have their daily needs met. This includes cleaning up their messes when they're sick and changing diapers. She takes a personal interest in each of their lives and gets to know the ones that are there just because they are old and are biding their time until they die.

I really don't know how she does that all day and then comes home to take care of the rest of us. I especially don't know how she can care for those aging people, get close to them, and then watch them die, which is what happened to one of her residents over the weekend. She has a ton of inner strength and she enjoys her job in spite of those kinds of set backs.

I don't know how she can deal with me when my pain is too much and I'm cranky or when the medication makes me irritable. She even finds ways to get me out of those moods. In short, especially on days like today, she amazes me. She loves me and that is a very tough job. I'm a pretty good guy with a good attitude most of the time, but I'm also suffering a lot and I try not to make it sound like I'm complaining when I tell her how I feel. It takes a strong woman to hear this coming from the man she loves every day. I know I would do the same for her, but still, I'm the one that's being taken care of and it bothers me that she has so many burdens on her shoulders. It is hard to do what I can to ease her burdens and sometimes I make it worse for her because I end up in more pain. I can't do nothing for her so it's rough when doing something actually back fires.

I just needed to write this down for everyone to read. Without her support, patients, and love this blog would not be possible and even more than that, my life would be unbearable. I don't think I'll ever be able to give back to her all that she has given to me. I am a very lucky man!!! I can't count all of the stories I've read about people with chronic pain who have had their spouses leave them. I can admit that some of those marriages would have failed regardless, but most of those failed as a direct result of the chronic pain and the mood changes that the condition and medications bring about. I really wish that everyone in this similar circumstance could have the support that I have.

I love you Wildflower!!!

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!!!