I have noticed recently that there have been a recent incline in commercials advertising medications for Fibromyalgia.
I am going to get a lot of flack for this, so I am going to state right away, medication does work for some, and if it works for you I am so happy that you found something that makes your life easier.
The two main commercials I have been watching are for Lyrica, and Cymbalta, two I have tried and have been unsuccessful. These commercials remind me of an infomercial. You have the person leading the perfect life, doing things that without the medication would be absolutely impossible. Then in a low tone, with the speed of an auctioneer, you hear the side effects and who should not use it, while the person is walking with the sun shining, or chasing after children, or working and living a normal life.
If only it was this easy!
You might as well have Mr. T do the commercials.
Pop this pill and your life will return to normal, just ignore the nausea, the dizziness, the vertigo, the weight gain, heart racing, shakes, insomnia or excess tiredness, and you will be as good as new.
Its scary when they are using the same tactics for meds as they do for selling cars, beer, food or any other material item.
Sunday, August 21, 2011
Wednesday, August 10, 2011
Disability Part Two
I wrote about Disability the other day, and today I am going to continue on that subject.
Disability is very helpful for those who are just diagnosed, or unable to get their Fibro under control. It is a pain in the ass to get, but once you are approved it gives you the freedom to take care of your own health. You are able to figure out what works best for your body.
However, should we think of it as a permanent solution? Are we then able to say, okay I have Fibro and I will never be able to work again. Once we are on disability do we become complacent.
When you are working you have that need for the money, the drive to get better, the need to have the doctors try to help quicker, the want to be able to live our daily life as we know it. Do we still have that when we have the security of disability?
There is no timeline, for some you can start to feel better, more active and productive, in months, two years, or as one friend I have ten years. Are you striving to get back to work? To live a life like the one you used to know, as close as possible at least?
Having Fibromyalgia does not mean that we are not able to work, we are no longer able to shop, to run errands, we just have to retrain our body, and figure out a new way to do it. Are you sitting on the couch, watching tv, not being active through out the day?
We should be using disability as a chance to get healthy and get back out to work. What are you doing while you are on disability?
Disability is very helpful for those who are just diagnosed, or unable to get their Fibro under control. It is a pain in the ass to get, but once you are approved it gives you the freedom to take care of your own health. You are able to figure out what works best for your body.
However, should we think of it as a permanent solution? Are we then able to say, okay I have Fibro and I will never be able to work again. Once we are on disability do we become complacent.
When you are working you have that need for the money, the drive to get better, the need to have the doctors try to help quicker, the want to be able to live our daily life as we know it. Do we still have that when we have the security of disability?
There is no timeline, for some you can start to feel better, more active and productive, in months, two years, or as one friend I have ten years. Are you striving to get back to work? To live a life like the one you used to know, as close as possible at least?
Having Fibromyalgia does not mean that we are not able to work, we are no longer able to shop, to run errands, we just have to retrain our body, and figure out a new way to do it. Are you sitting on the couch, watching tv, not being active through out the day?
We should be using disability as a chance to get healthy and get back out to work. What are you doing while you are on disability?
Saturday, August 6, 2011
Step Into Their Shoes - Disability
Many people living with Fibromyalgia are no longer able to live the life they want, or used to live before their diagnosis. This includes working, which is a necessity of life, unless you have a trust fund, married rich, or won the lottery.
Working with Fibro is near impossible if your symptoms are not under control, and even if your symptoms are under control it is still very difficult. We then turn to Disability. Applying for disability is a job in itself, that you wish you had an Assistant to do for you. You file the paperwork, go through interviews, have many doctors do examinations mental and physical. Then the majority of the time you are denied, and have to reapply.
I understand that some of these people are absolute idiots with no compassion or sensitivity. I will not say all as I am sure there are a few good ones, I am being hopeful on this. We go through the questions, the stares, the insinuations that it is mental, as well as the suggestions that we want on disability for the free ride. Sometimes it works, it does turn people off, and stop the process of the individual applying for disability. Is it deferring the right people?
Have you ever sat down and thought about it from their point of view? I know this is difficult, especially when they are going through the process. These individuals deal with hundreds, if not thousands of people a year, with a percentage of people who are faking the symptoms and trying to get a free ride. I have met a few of these people, as I am sure some of you have. Then we have a disease, that has not been recognized in every state, province, county, city, or country, as more than a symptom. There are few tests that diagnose it, actually really only the 18/19 point test (some doctors are doing 19 points now). These are employees who have been trained to look at the medical information given to them, including xrays, ultrasound, and test results. Which we are unable to give them.
We are the red flag. Before they have talked to us, they have reviewed all the information, as soon as they see Fibromyalgia it is a red flag, and it is not fair to us. However, how many people file using Fibro as their reason without actually having it. We are the individuals that have really no medical proof, yet we are going to the government saying "We are sick, we need help, we cannot work".
They are going to be extra cautious to approve a person with Fibromyalgia.
Although the Disability staff does have reasoning to be more cautious, it does not give them the ability or right to treat you with disrespect. They will, one person will definitely make a comment, or say something absolutely ridiculous.
"If you want money marry rich" (that was my favourite)
"You don't look sick"
"It is just mental"
"You are feeling overwhelmed that is all"
and the straight to the point comment;
"You are trying to scam the system" (I have had this numerous times)
No one, at any time as a right to speak to you with this kind of ignorance, disrespect, or lack of compassion.
Please remember though, when you get these comments, try to remember how many people they have who try to commit fraud, or that these employees have been trained to red flag us, or that in some cases they just are not to bright and can't get pass if they don't see it, it is not true (if there is no medical proof, it is not true). As many times they make the comment, as many times as they deny you, remember these things, because you will want to say something, you will get frustrated, and you will get extremely angry, but hold your tongue, and remember this is how they have been trained, and if you comment they will deny you on that alone.
Working with Fibro is near impossible if your symptoms are not under control, and even if your symptoms are under control it is still very difficult. We then turn to Disability. Applying for disability is a job in itself, that you wish you had an Assistant to do for you. You file the paperwork, go through interviews, have many doctors do examinations mental and physical. Then the majority of the time you are denied, and have to reapply.
I understand that some of these people are absolute idiots with no compassion or sensitivity. I will not say all as I am sure there are a few good ones, I am being hopeful on this. We go through the questions, the stares, the insinuations that it is mental, as well as the suggestions that we want on disability for the free ride. Sometimes it works, it does turn people off, and stop the process of the individual applying for disability. Is it deferring the right people?
Have you ever sat down and thought about it from their point of view? I know this is difficult, especially when they are going through the process. These individuals deal with hundreds, if not thousands of people a year, with a percentage of people who are faking the symptoms and trying to get a free ride. I have met a few of these people, as I am sure some of you have. Then we have a disease, that has not been recognized in every state, province, county, city, or country, as more than a symptom. There are few tests that diagnose it, actually really only the 18/19 point test (some doctors are doing 19 points now). These are employees who have been trained to look at the medical information given to them, including xrays, ultrasound, and test results. Which we are unable to give them.
We are the red flag. Before they have talked to us, they have reviewed all the information, as soon as they see Fibromyalgia it is a red flag, and it is not fair to us. However, how many people file using Fibro as their reason without actually having it. We are the individuals that have really no medical proof, yet we are going to the government saying "We are sick, we need help, we cannot work".
They are going to be extra cautious to approve a person with Fibromyalgia.
Although the Disability staff does have reasoning to be more cautious, it does not give them the ability or right to treat you with disrespect. They will, one person will definitely make a comment, or say something absolutely ridiculous.
"If you want money marry rich" (that was my favourite)
"You don't look sick"
"It is just mental"
"You are feeling overwhelmed that is all"
and the straight to the point comment;
"You are trying to scam the system" (I have had this numerous times)
No one, at any time as a right to speak to you with this kind of ignorance, disrespect, or lack of compassion.
Please remember though, when you get these comments, try to remember how many people they have who try to commit fraud, or that these employees have been trained to red flag us, or that in some cases they just are not to bright and can't get pass if they don't see it, it is not true (if there is no medical proof, it is not true). As many times they make the comment, as many times as they deny you, remember these things, because you will want to say something, you will get frustrated, and you will get extremely angry, but hold your tongue, and remember this is how they have been trained, and if you comment they will deny you on that alone.
Have A Sense Of Humour
Today I went for a brain scan. Not my first, it is my fourth or fifth. I suppose they are making sure the wheel is still moving, or at least the hamster is still breathing.
It is a very simple process, you go in they inject you with the radioactive material (you don't get any special powers from it, I wish I could at least fly), wait 45 minutes, and then they lay you down, pop your head into a machine while it circles and takes pictures for about 15mins. Very simple.
My theory is whether you are in a horrible mood, if you are going into the doctors or know you are going to get a needle, or have a medical procedure you do not piss anyone off. Go in with a good attitude and remember your manners and it seems to work. However, today it seems that I ran into everyone that was lacking a sense of humour.
I had my mother with me, and nothing worked. The jokes went right over these nurses heads, a good attitude, smiles, everything seemed to skip over them. I had a total of three nurses, or lab technicians, and none of them could joke around. I even made a joke when it took three attempts and two nurses to get a needle into my vein. But for some reason nothing. Normally I would say maybe it is because I am not funny, but no, not today, I was having fun, my mom was having fun, and the people in the waiting room were having fun along with us, just not the medical staff.
There were cancer patients, heart patients, chronic pain patients, and the last thing we need is a moody or unhappy person sticking us with a needle, or performing tests on us. A smile, a laugh, a nice word, goes a long way.
For all the medical staff out there, I understand you have bad days, but put yourself in your patients place. A smile, doesn't take much, heck it will even lessen the wrinkles, a kind word, a little dialogue goes a long way. It will put the person at ease, and make your day go alot smoother, and trust me a kind word goes a long way when you are digging a needle into the arm of a person.
A sense of humour, is it possible? Is it too much to ask for?
It is a very simple process, you go in they inject you with the radioactive material (you don't get any special powers from it, I wish I could at least fly), wait 45 minutes, and then they lay you down, pop your head into a machine while it circles and takes pictures for about 15mins. Very simple.
My theory is whether you are in a horrible mood, if you are going into the doctors or know you are going to get a needle, or have a medical procedure you do not piss anyone off. Go in with a good attitude and remember your manners and it seems to work. However, today it seems that I ran into everyone that was lacking a sense of humour.
I had my mother with me, and nothing worked. The jokes went right over these nurses heads, a good attitude, smiles, everything seemed to skip over them. I had a total of three nurses, or lab technicians, and none of them could joke around. I even made a joke when it took three attempts and two nurses to get a needle into my vein. But for some reason nothing. Normally I would say maybe it is because I am not funny, but no, not today, I was having fun, my mom was having fun, and the people in the waiting room were having fun along with us, just not the medical staff.
There were cancer patients, heart patients, chronic pain patients, and the last thing we need is a moody or unhappy person sticking us with a needle, or performing tests on us. A smile, a laugh, a nice word, goes a long way.
For all the medical staff out there, I understand you have bad days, but put yourself in your patients place. A smile, doesn't take much, heck it will even lessen the wrinkles, a kind word, a little dialogue goes a long way. It will put the person at ease, and make your day go alot smoother, and trust me a kind word goes a long way when you are digging a needle into the arm of a person.
A sense of humour, is it possible? Is it too much to ask for?
Thursday, August 4, 2011
I Hope It Is Not Just Me
I am hoping that it is not just me.
I am an absolute clutz, hurting myself without knowing how. If I am moving, there is a 100% chance that I can hurt myself. I am the one who walks into walls, and people just ignore it now.
I have hurt my wrist, but I have gotten so used to pain that I just ignore it most of the time, any kind of pain I ignore.
So the question is, are we really hurt, or is it the Fibro overreacting to a simple bruise?
Have you ever wondered? When do we need to go to the doctor right away, or when should we wait and see if it is actually serious or not?
Confusing, we are oversensitive to pain, but we learn to deal and our pain threshold increases constantly to compensate, but does that mean we ignore something like a sprain, or a fracture?
In the past I have ignored a fractured ankle, thinking it is the Fibro. I walked on it, carried my children, ran, did all the wonderful things you are not supposed to do, and found out years later it was actually fractured. All because I have a high pain threshold and have learned to ignore the pain.
Pain tells us when there is something wrong with our body. All we know is pain, so how do we know it is the Fibro or there is something wrong with our body?
I am an absolute clutz, hurting myself without knowing how. If I am moving, there is a 100% chance that I can hurt myself. I am the one who walks into walls, and people just ignore it now.
I have hurt my wrist, but I have gotten so used to pain that I just ignore it most of the time, any kind of pain I ignore.
So the question is, are we really hurt, or is it the Fibro overreacting to a simple bruise?
Have you ever wondered? When do we need to go to the doctor right away, or when should we wait and see if it is actually serious or not?
Confusing, we are oversensitive to pain, but we learn to deal and our pain threshold increases constantly to compensate, but does that mean we ignore something like a sprain, or a fracture?
In the past I have ignored a fractured ankle, thinking it is the Fibro. I walked on it, carried my children, ran, did all the wonderful things you are not supposed to do, and found out years later it was actually fractured. All because I have a high pain threshold and have learned to ignore the pain.
Pain tells us when there is something wrong with our body. All we know is pain, so how do we know it is the Fibro or there is something wrong with our body?
Wednesday, August 3, 2011
Drugs
I have been doing amazing with controlling my Fibro. Today it is raining, and besides the fact that I am tired (2 kids will do that alone), I was able to get up and get moving.
Lately I have been having a few stomach issues that are not related to Fibro. The pain has stopped me from eating, and when I do try to eat something small I am fatigued right away. That is not important, anyways i have had an ultrasound done and they are waiting for the results. I have spoken to my doctor and it can be anything from scar tissue issues from my previous surgeries, or previous drug intake (from the prescription drugs dealing with Fibro), to just a fluke.
I have mentioned drugs and my problems with them previously. My recent issues have made me think again about what the drugs can do to your body, and this has made me want to remind everyone to make sure that everyone is educated in their choices with prescription drugs and Fibro. I have heard doctors tell me about possible side effects when you are taking the drug, but what is the side effect for taking the drug on a long term basis. Has a doctor ever told you what could happen to your kidneys, liver, or your system period if you are on the drug for a long period of time?
I understand that you are sometimes in so much pain, discomfort that you will try anything. If it works great, but what happens 40 years from now.
The majority of the prescriptions for Fibro patients have not been on the market long enough to see the long term effects. Some of the drugs are only conditionally approved.
We really need to start taking responsibility, and holding our doctors responsible for telling us the effects now and the effects that could happen in the future.
You are in pain now, what are you going to feel when your body can no longer clean the drugs out of your system (especially narcotics), or start to negatively affecting your body?
Please just question, and question the doctors answers.
Lately I have been having a few stomach issues that are not related to Fibro. The pain has stopped me from eating, and when I do try to eat something small I am fatigued right away. That is not important, anyways i have had an ultrasound done and they are waiting for the results. I have spoken to my doctor and it can be anything from scar tissue issues from my previous surgeries, or previous drug intake (from the prescription drugs dealing with Fibro), to just a fluke.
I have mentioned drugs and my problems with them previously. My recent issues have made me think again about what the drugs can do to your body, and this has made me want to remind everyone to make sure that everyone is educated in their choices with prescription drugs and Fibro. I have heard doctors tell me about possible side effects when you are taking the drug, but what is the side effect for taking the drug on a long term basis. Has a doctor ever told you what could happen to your kidneys, liver, or your system period if you are on the drug for a long period of time?
I understand that you are sometimes in so much pain, discomfort that you will try anything. If it works great, but what happens 40 years from now.
The majority of the prescriptions for Fibro patients have not been on the market long enough to see the long term effects. Some of the drugs are only conditionally approved.
We really need to start taking responsibility, and holding our doctors responsible for telling us the effects now and the effects that could happen in the future.
You are in pain now, what are you going to feel when your body can no longer clean the drugs out of your system (especially narcotics), or start to negatively affecting your body?
Please just question, and question the doctors answers.
Monday, August 1, 2011
The Dentist
I have been avoiding the dreaded dentist for over five years now, before I was officially diagnosed with Fibro, this week I could avoid it no longer.
The last time I went, they had to pull my back tooth, where a previous person who claimed to be a dentist did a bad root canal. Thank goodness it is the very back tooth, and I wont be having a gaping hole in my mouth, vanity always the foremost concern. However, after 8 needles of trying to numb that area with no success, and pulling half the tooth out, I could no longer take the pain. Now it is time to have the other half taken out and a full cleaning and all that wonderful stuff.
I went to the same dentist that pulled half the tooth out, he was wonderful before, and decided to go to him again. I had spoken to my doctor and his solution was for them to put me out completely as the numbing medicine no longer works with me. This dentist is also a surgeon and is licensed (I did check) to put me out.
I went in, filled out the paperwork. I went thru the paperwork, explained to the Admin Assistant, who was wonderful, that I had Fibro and all that wonderful stuff. They took me to the room, and there I waited. It took all my self control to not bolt out the door, it also helped that someone else drove me so I didn't have the car keys. After about 15 mins the dentist came in, asked how I was, and I replied don't want to be here. He asked what had happened, and why it took so long to come back, and I explained the whole Fibro thing and I was officially diagnosed. To my delight he said "glad you told me, I have other patients with Fibro, and I have to change how I treat you because of it".
Who knew? Well of course someone knew, I was the dolt. I was so worried about the pain factor, and having to go through with it and having to feel it all. What an idiot I was. I let fear overcome me, and didn't even bother to research the process, alternatives, or even call my dentist, I just completely ignored it. I should of known better with Fibro, you need everything healthy, and I was just ignoring a part of me that was getting more and more ill. I was an absolute fool.
Don't let fear ever run your life, research, get informed, there is always a way. Learn from my years of hiding in a box.
The last time I went, they had to pull my back tooth, where a previous person who claimed to be a dentist did a bad root canal. Thank goodness it is the very back tooth, and I wont be having a gaping hole in my mouth, vanity always the foremost concern. However, after 8 needles of trying to numb that area with no success, and pulling half the tooth out, I could no longer take the pain. Now it is time to have the other half taken out and a full cleaning and all that wonderful stuff.
I went to the same dentist that pulled half the tooth out, he was wonderful before, and decided to go to him again. I had spoken to my doctor and his solution was for them to put me out completely as the numbing medicine no longer works with me. This dentist is also a surgeon and is licensed (I did check) to put me out.
I went in, filled out the paperwork. I went thru the paperwork, explained to the Admin Assistant, who was wonderful, that I had Fibro and all that wonderful stuff. They took me to the room, and there I waited. It took all my self control to not bolt out the door, it also helped that someone else drove me so I didn't have the car keys. After about 15 mins the dentist came in, asked how I was, and I replied don't want to be here. He asked what had happened, and why it took so long to come back, and I explained the whole Fibro thing and I was officially diagnosed. To my delight he said "glad you told me, I have other patients with Fibro, and I have to change how I treat you because of it".
Who knew? Well of course someone knew, I was the dolt. I was so worried about the pain factor, and having to go through with it and having to feel it all. What an idiot I was. I let fear overcome me, and didn't even bother to research the process, alternatives, or even call my dentist, I just completely ignored it. I should of known better with Fibro, you need everything healthy, and I was just ignoring a part of me that was getting more and more ill. I was an absolute fool.
Don't let fear ever run your life, research, get informed, there is always a way. Learn from my years of hiding in a box.
Saturday, July 23, 2011
I Did It My Way
I went to my doctors this week.
He walked in and the same questions came out that always starts our visits;
"Hows the Fibro doing?"
I was actually able to say "Great".
My Doctor looked at me and was shocked. He asked "Really What Are You Doing?"
I told him, diet, exercise, and just taking it day by day. No more drugs, which meant no more side effects, increased fatigue, all those nice things.
His response
"You did what 95% of Fibro sufferers do not do, and that is do it the natural way, which is the most effective"
Okay, I remember you telling me exercise would help. However, I also remember you writing the tens of prescriptions, offering me narcotics, and then saying exercise, if I can manage it, on top of that. I was dumbfounded.
I Did It My Way. I found out what worked for me, and it is working.
He walked in and the same questions came out that always starts our visits;
"Hows the Fibro doing?"
I was actually able to say "Great".
My Doctor looked at me and was shocked. He asked "Really What Are You Doing?"
I told him, diet, exercise, and just taking it day by day. No more drugs, which meant no more side effects, increased fatigue, all those nice things.
His response
"You did what 95% of Fibro sufferers do not do, and that is do it the natural way, which is the most effective"
Okay, I remember you telling me exercise would help. However, I also remember you writing the tens of prescriptions, offering me narcotics, and then saying exercise, if I can manage it, on top of that. I was dumbfounded.
I Did It My Way. I found out what worked for me, and it is working.
Thursday, July 14, 2011
Censoring
I was speaking with my mother today. Nothing like a mothers wisdom, I wonder when the wisdom will reach me.
We were talking about support groups, and how you have to kind of censor yourself while in the group. I realized I have been censoring myself with my blog. I am trying to be so correct, and take everyone's feelings into consideration, that I am not saying what I truly want to say.
I absolutely despise when others censor themselves with me, or sugar coat it, so why would I do it in my blog.
From now on, it is exactly what I want to say.
We were talking about support groups, and how you have to kind of censor yourself while in the group. I realized I have been censoring myself with my blog. I am trying to be so correct, and take everyone's feelings into consideration, that I am not saying what I truly want to say.
I absolutely despise when others censor themselves with me, or sugar coat it, so why would I do it in my blog.
From now on, it is exactly what I want to say.
My Idea
I mentioned recently that I had an idea. Rare, but yes I had an idea.
My idea, what was it?
A person live 48 hours in my shoes. Simulate as close as possible living with Fibromyalgia.
My mom, agreed to do an experiment, without knowing exactly what the experiment is. After I explained it to her, she said as long as I do not make her get sick to her stomach she is up for it. Brave woman.
The key now, is to figure out what to simulate the key aspects of Fibro.
Any suggestions, symptoms that you would like to see simulated, or thoughts, are welcomed.
My idea, what was it?
A person live 48 hours in my shoes. Simulate as close as possible living with Fibromyalgia.
My mom, agreed to do an experiment, without knowing exactly what the experiment is. After I explained it to her, she said as long as I do not make her get sick to her stomach she is up for it. Brave woman.
The key now, is to figure out what to simulate the key aspects of Fibro.
Any suggestions, symptoms that you would like to see simulated, or thoughts, are welcomed.
Sunday, July 10, 2011
Simple Things Are Sometimes The Hardest
We make things more complicated. Simple as that.
Especially when you are living with Fibro or chronic pain, there are more things to consider, worry about and you seem to over think, over compensate, and it makes it more complicated than it seems, and makes us less likely to do anything.
10 errands, 10 simple tasks to a normal person, is more along the lines of 100 for you or I. Grocery Shopping, Making 3 Meals A Day, Laundry, Cleaning, Paying Bills, Showering and Getting Ready Is A Chore For US, and then if you have WORK, you are ready to collapse by 9am.
Then we are constantly worrying, thinking HOW ARE WE GOING TO FIND THE ENERGY, when am I going to have time, and then if you don't do them, the guilt is unbelievable.
Why? Why think about it?
Is there anything that important that you must do it today? If so do that one thing and say F" It to the rest (except work).
I found the key, is to stop worrying, and stop over thinking. Stop caring about what other people say and just do what you can. If you accomplish work, and making homemade meals YOU ROCK. If you do another thing, you are AMAZING, if you have a fantastic day SUPERWOMAN.
If anyone has anything to say about it, tell them where to go.
Especially when you are living with Fibro or chronic pain, there are more things to consider, worry about and you seem to over think, over compensate, and it makes it more complicated than it seems, and makes us less likely to do anything.
10 errands, 10 simple tasks to a normal person, is more along the lines of 100 for you or I. Grocery Shopping, Making 3 Meals A Day, Laundry, Cleaning, Paying Bills, Showering and Getting Ready Is A Chore For US, and then if you have WORK, you are ready to collapse by 9am.
Then we are constantly worrying, thinking HOW ARE WE GOING TO FIND THE ENERGY, when am I going to have time, and then if you don't do them, the guilt is unbelievable.
Why? Why think about it?
Is there anything that important that you must do it today? If so do that one thing and say F" It to the rest (except work).
I found the key, is to stop worrying, and stop over thinking. Stop caring about what other people say and just do what you can. If you accomplish work, and making homemade meals YOU ROCK. If you do another thing, you are AMAZING, if you have a fantastic day SUPERWOMAN.
If anyone has anything to say about it, tell them where to go.
Wednesday, July 6, 2011
Tuesday, July 5, 2011
Just One Day
I have always said that I would not wish Fibro, or Chronic Pain on my worst enemy. At times, I do question myself.
It is not with strangers, it is with family, friends, co workers, or any other person who is in my life on a consistent basis. On a daily basis I have someone telling me how I can feel better, improve my life, a new vitamin, trying to sympathize, or try to tell me that it really can't be that bad. I am in a much better place now, than I was a year ago.
I understand that it is coming from a good place. I try to remember that, some days are harder than others. Sometimes, and it is rare, the thought crosses my mind, "What would you do if you had to live with it for one day?". Today that thought crossed my mind.
It is not with strangers, it is with family, friends, co workers, or any other person who is in my life on a consistent basis. On a daily basis I have someone telling me how I can feel better, improve my life, a new vitamin, trying to sympathize, or try to tell me that it really can't be that bad. I am in a much better place now, than I was a year ago.
I understand that it is coming from a good place. I try to remember that, some days are harder than others. Sometimes, and it is rare, the thought crosses my mind, "What would you do if you had to live with it for one day?". Today that thought crossed my mind.
Monday, July 4, 2011
Support Groups
I have had the great pleasure of speaking with a few support groups that are not Canadian based.
It seems that some support groups, not all, have taken the attitude that I am trying to adopt. What is this attitude? Stop the complaining, Get up and GO!
Groups do activities, bike rides, raise money and awareness for Fibromyalgia on an ongoing, daily basis.
I am aware that there are a few groups in Canada and even fewer in my surrounding area that does bring awareness to our wonderful symptom, disease, syndrome, whatever you would like to call it. However, I have contacted no fewer than 21 support groups in the immediate area, general area, and a distance of 100km surrounding the city I live in. I have contacted over 50 across Ontario, and 100 across Canada. Not one support group, has a group specifically designated for the individuals in our support system, and about a handful across Canada have an exercise based group. None of these in Ontario. I could have just contacted the wrong ones, I am sure I did not contact them all.
Every support group was welcoming and suggested that I do come to a meeting, to sit, discuss how I feel, and to gather more information. I appreciate every offer. However, I am tired of discussing how I feel, I am tired of researching what is happening to my body, unless you have new research that has a sliver of hope that leads to a cure. I am ready to take action.
I am really trying not to judge, and I am positive that these groups do help and give people the support they need. However, when do you finally say "Okay, enough, it is time to get off my ass, stop complaining, and do something for myself, help myself"?.
I have attended a few meetings, not alot, call me a snob, could care less. I just can not sit around and listen to the same complaints, the same symptoms, the same depressing thoughts that I already feel. Great you have someone who knows you are not faking the pain, not acting tired. Fantastic you have someone who relates to you, we all need that. Continually going to these groups does it really help with the depression, does it help with the lack of will to do anything, or does it feed into it? From what I have seen, it feeds into it. Honestly, How can it not? If you go into a room of people who are depressed, it is bound to affect you.
I am no better than anyone else. I am just wondering, do Support Groups always help, or do they feed into our symptoms?
It seems that some support groups, not all, have taken the attitude that I am trying to adopt. What is this attitude? Stop the complaining, Get up and GO!
Groups do activities, bike rides, raise money and awareness for Fibromyalgia on an ongoing, daily basis.
I am aware that there are a few groups in Canada and even fewer in my surrounding area that does bring awareness to our wonderful symptom, disease, syndrome, whatever you would like to call it. However, I have contacted no fewer than 21 support groups in the immediate area, general area, and a distance of 100km surrounding the city I live in. I have contacted over 50 across Ontario, and 100 across Canada. Not one support group, has a group specifically designated for the individuals in our support system, and about a handful across Canada have an exercise based group. None of these in Ontario. I could have just contacted the wrong ones, I am sure I did not contact them all.
Every support group was welcoming and suggested that I do come to a meeting, to sit, discuss how I feel, and to gather more information. I appreciate every offer. However, I am tired of discussing how I feel, I am tired of researching what is happening to my body, unless you have new research that has a sliver of hope that leads to a cure. I am ready to take action.
I am really trying not to judge, and I am positive that these groups do help and give people the support they need. However, when do you finally say "Okay, enough, it is time to get off my ass, stop complaining, and do something for myself, help myself"?.
I have attended a few meetings, not alot, call me a snob, could care less. I just can not sit around and listen to the same complaints, the same symptoms, the same depressing thoughts that I already feel. Great you have someone who knows you are not faking the pain, not acting tired. Fantastic you have someone who relates to you, we all need that. Continually going to these groups does it really help with the depression, does it help with the lack of will to do anything, or does it feed into it? From what I have seen, it feeds into it. Honestly, How can it not? If you go into a room of people who are depressed, it is bound to affect you.
I am no better than anyone else. I am just wondering, do Support Groups always help, or do they feed into our symptoms?
Productive
Yesterday, I had the most amazing time with my children. I had a small family BBQ to celebrate how great they did in school this year.
When you are preparing for a BBQ, or small get together there are a hundred small things to do. I was happy to do them all, from food prep to water balloons to decorating to involving my children so they felt it was about them.
It was all worth it, everyone enjoyed themselves. Good simple food, 2 water fights (I found out I can still hop a fence and run fast when someone is chasing me), and great conversation.
This morning I woke up and it was difficult to get out of bed. I knew that it would catch up to me, but I still have things to do, and still want to accomplish certain tasks for the day, especially before the kids wake up.
I have uploaded pictures, I have emailed numerous people, assisted family members, and worked on research for things I want to start. I have accomplished more than I thought in two hours, and am very proud of myself.
Whether you accomplish one or two things, just do it. We can always use the excuse I hurt, or I am tired, or I need to rest. Fight the feeling, there are better days than others, use those days, and do something you want to accomplish.
When you are preparing for a BBQ, or small get together there are a hundred small things to do. I was happy to do them all, from food prep to water balloons to decorating to involving my children so they felt it was about them.
It was all worth it, everyone enjoyed themselves. Good simple food, 2 water fights (I found out I can still hop a fence and run fast when someone is chasing me), and great conversation.
This morning I woke up and it was difficult to get out of bed. I knew that it would catch up to me, but I still have things to do, and still want to accomplish certain tasks for the day, especially before the kids wake up.
I have uploaded pictures, I have emailed numerous people, assisted family members, and worked on research for things I want to start. I have accomplished more than I thought in two hours, and am very proud of myself.
Whether you accomplish one or two things, just do it. We can always use the excuse I hurt, or I am tired, or I need to rest. Fight the feeling, there are better days than others, use those days, and do something you want to accomplish.
Sunday, June 26, 2011
Aerial Yoga
I am one who hates exercise. Exercise can be mundane and boring. You go to the gym, you are running on the treadmill, lifting weights, or listening to someones issues "my boyfriend is such a ...". I must admit though, I love the Stair Climber.
Exercise is great for Chronic Pain sufferers. I run, and I have just purchased a bike, however, I want to try things that are not necessarily conventional. So I figure, I am going to start to try different activities.
The first one I chose was Aerial Yoga. I did not want to the advanced class, as my health has been more in the poor zone, so I tried the Restorative Aerial Yoga.
I went to P3 Yoga in Pickering, and it was amazing. The teacher, Suzanne was fabulous.
I think the main reason I wanted to try this, was my Doctors told me NO. If you tell me NO I am going to do it.
Anyways, I dragged my mother with me. We arrived early, and I had one look at the class and said I am going to fall flat on my butt (thank god for the padding). My mother and I were playing around trying to get up, and I absolutely suck at it. But I have never laughed so hard at myself, or my mom than I did in those 5 mins. It was two elephants trying to cross on a tight wire, sorry mom, although she was better than me.
Finally, we started. It was not intense by any means. It was more for people like us, or people who are suffering from an ailment, or trying to recover. Once again, doctors aren't always right. You work within yourself, within your parameters, and with the tension of the material.
You are sitting in what I can best explain as a huge, Lycra like hammock, it is amazing. You are cocooned, and it is very relaxing. I was in incredible pain, it had been raining, I have been travelling an average of 20 hours a week, not sleeping, bad diet, and recovering from a minor attack. Within 10 mins of the class, the pain had significantly subsided from my hips.
I popped out my hip twice, and after a couple minutes of resting, was back in there. The instructor, Suzanne came over to me, while I was in the hammock and asked how I was doing, and right away she knew not to touch me. THANK YOU. After the class she even said she could read that I was saying "Don't Fn Touch Me" (sorry Suzanne), and she was not offended in the least.
I am not coordinated in the least, but if you didn't understand, you could yell out for help, or just say "WHAT?" like I did. Suzanne was the best, and just came and helped, and worked within my abilities. If you are not able to do the exercise, or just want to relax, to just lie down in the sling/hammock (sorry do not know the correct term) with your eyes closed, and the rocking motion will relax your body.
After the class was done, we spoke with Suzanne. Suzanne understood the limitations, and welcomed the suggestions I had, and as always I had suggestions
The key, I walked out of that class with a significant reduction of pain. I would and will return to this class.
I am going to try new and fun things, different ways to get exercise, make it fun again. I challenge all of you to do the same.
The next activity I am thinking Flying Trapeze. If you have any ideas, I am open to try them.
Waiting for suggestions.
Thank you to Suzanne at P3 Yoga at 905.409.8861
Exercise is great for Chronic Pain sufferers. I run, and I have just purchased a bike, however, I want to try things that are not necessarily conventional. So I figure, I am going to start to try different activities.
The first one I chose was Aerial Yoga. I did not want to the advanced class, as my health has been more in the poor zone, so I tried the Restorative Aerial Yoga.
I went to P3 Yoga in Pickering, and it was amazing. The teacher, Suzanne was fabulous.
I think the main reason I wanted to try this, was my Doctors told me NO. If you tell me NO I am going to do it.
Anyways, I dragged my mother with me. We arrived early, and I had one look at the class and said I am going to fall flat on my butt (thank god for the padding). My mother and I were playing around trying to get up, and I absolutely suck at it. But I have never laughed so hard at myself, or my mom than I did in those 5 mins. It was two elephants trying to cross on a tight wire, sorry mom, although she was better than me.
Finally, we started. It was not intense by any means. It was more for people like us, or people who are suffering from an ailment, or trying to recover. Once again, doctors aren't always right. You work within yourself, within your parameters, and with the tension of the material.
You are sitting in what I can best explain as a huge, Lycra like hammock, it is amazing. You are cocooned, and it is very relaxing. I was in incredible pain, it had been raining, I have been travelling an average of 20 hours a week, not sleeping, bad diet, and recovering from a minor attack. Within 10 mins of the class, the pain had significantly subsided from my hips.
I popped out my hip twice, and after a couple minutes of resting, was back in there. The instructor, Suzanne came over to me, while I was in the hammock and asked how I was doing, and right away she knew not to touch me. THANK YOU. After the class she even said she could read that I was saying "Don't Fn Touch Me" (sorry Suzanne), and she was not offended in the least.
I am not coordinated in the least, but if you didn't understand, you could yell out for help, or just say "WHAT?" like I did. Suzanne was the best, and just came and helped, and worked within my abilities. If you are not able to do the exercise, or just want to relax, to just lie down in the sling/hammock (sorry do not know the correct term) with your eyes closed, and the rocking motion will relax your body.
After the class was done, we spoke with Suzanne. Suzanne understood the limitations, and welcomed the suggestions I had, and as always I had suggestions
The key, I walked out of that class with a significant reduction of pain. I would and will return to this class.
I am going to try new and fun things, different ways to get exercise, make it fun again. I challenge all of you to do the same.
The next activity I am thinking Flying Trapeze. If you have any ideas, I am open to try them.
Waiting for suggestions.
Thank you to Suzanne at P3 Yoga at 905.409.8861
I AM BACK
It has been a long time, and I have missed it, but I AM BACK.
I have spent the last few months taking care of everyone else, but myself, and doing things for everyone else, but myself. Now I am focusing back on me.
Selfish I know, but to all who want to call me that BUGGER OFF.
Please never forget the importance of focusing on what makes you happy, healthy, and what will get you to your dreams.
I have spent the last few months taking care of everyone else, but myself, and doing things for everyone else, but myself. Now I am focusing back on me.
Selfish I know, but to all who want to call me that BUGGER OFF.
Please never forget the importance of focusing on what makes you happy, healthy, and what will get you to your dreams.
Monday, May 2, 2011
Simple Things
We should take a lesson from our kids....we spend so much money on toys, presents, and they find more joy in playing with the empty boxes.
Do you take time out to enjoy the simple things in life?
I find that with Fibro, the time I have where I am able to do tasks, activities, daily life, I take it and try to complete as much as possible in the short period of time. The time I am relaxing I am trying to not concentrate on the pain, and the relaxing is more out of necessity not want.
Maybe it is because I have been feeling better, or maybe it is because I just had an epiphany, but I realized that the simple things I forgot. I sat down in a comfy chair, with a book and a cup of tea and for 15mins I read. Something so simple, but relaxed me more than sitting on the couch watching tv. Now I carry a book around with me everywhere, whether it is waiting in a car, or for an appointment, I read my book and I get those few minutes of peace.
Do you take advantage of the simple things? Think of what you used to do, the little things and see if you can incorporate it into your life.
Do you take time out to enjoy the simple things in life?
I find that with Fibro, the time I have where I am able to do tasks, activities, daily life, I take it and try to complete as much as possible in the short period of time. The time I am relaxing I am trying to not concentrate on the pain, and the relaxing is more out of necessity not want.
Maybe it is because I have been feeling better, or maybe it is because I just had an epiphany, but I realized that the simple things I forgot. I sat down in a comfy chair, with a book and a cup of tea and for 15mins I read. Something so simple, but relaxed me more than sitting on the couch watching tv. Now I carry a book around with me everywhere, whether it is waiting in a car, or for an appointment, I read my book and I get those few minutes of peace.
Do you take advantage of the simple things? Think of what you used to do, the little things and see if you can incorporate it into your life.
Thursday, April 28, 2011
Pain - What Would You Do?
For the last few weeks, I have driven, travelled and tested my body more than I should have, nor would recommend for a person who does not have Fibro, let alone have Fibro.
It was completely worth it, as I was privileged enough to spend a few last weeks, days and moments with a wonderful, compassionate, true lady.
I will admit, (I hope that my doctor is not reading this, I will never hear the end of it) that the exercise and diet I have been faithful to did help, and I do have to get back to it. Without it, or if it had been a year ago, 6 months ago I would have crashed.
After two weeks, of no sleep, travelling at least two hours a day, still having kids to take care of, and the mental stress, the pain was just building and building and getting more and more unbearable.
Then you start thinking. What would you do to keep going? What would you do to get rid of the pain? Especially when you need immediate relief.
I have tried so many painkillers and none have worked. But you are always willing to try them again and again in the hopes, in the faith that it will work. This is why I do not keep any on hand, when you are desperate enough your actions will mimic your desperation. I was tempted to call the pharmacy for the fentanol, the codeine, the morphine....I just need a little relief.
I have done this before, sitting at work, in front of the computer, praying my fingers would bend without sending the chill of pain through my body every time I moved them. Take the bottle of morphine out of my purse and pop a few, and nothing happened.
I stopped this when I realized it could lead to additional problems.
There are many options that are out there for pain management. Narcotics, nerve numbing, meditation, massage, acupuncture, reflexology, and so on.... But with Fibro it is hit and miss, and what happens when you have tried the majority and it is a miss, or when you need immediate relief.
I didn't always, and I am very proud of myself that I did not succumb to the drugs this time. However, will I in the future?
What have you done in desperation, in hopes to get rid of the pain?
It was completely worth it, as I was privileged enough to spend a few last weeks, days and moments with a wonderful, compassionate, true lady.
I will admit, (I hope that my doctor is not reading this, I will never hear the end of it) that the exercise and diet I have been faithful to did help, and I do have to get back to it. Without it, or if it had been a year ago, 6 months ago I would have crashed.
After two weeks, of no sleep, travelling at least two hours a day, still having kids to take care of, and the mental stress, the pain was just building and building and getting more and more unbearable.
Then you start thinking. What would you do to keep going? What would you do to get rid of the pain? Especially when you need immediate relief.
I have tried so many painkillers and none have worked. But you are always willing to try them again and again in the hopes, in the faith that it will work. This is why I do not keep any on hand, when you are desperate enough your actions will mimic your desperation. I was tempted to call the pharmacy for the fentanol, the codeine, the morphine....I just need a little relief.
I have done this before, sitting at work, in front of the computer, praying my fingers would bend without sending the chill of pain through my body every time I moved them. Take the bottle of morphine out of my purse and pop a few, and nothing happened.
I stopped this when I realized it could lead to additional problems.
There are many options that are out there for pain management. Narcotics, nerve numbing, meditation, massage, acupuncture, reflexology, and so on.... But with Fibro it is hit and miss, and what happens when you have tried the majority and it is a miss, or when you need immediate relief.
I didn't always, and I am very proud of myself that I did not succumb to the drugs this time. However, will I in the future?
What have you done in desperation, in hopes to get rid of the pain?
I Am Finally Back
Well it has been a trying few weeks, but I survived and I am back.
Thank you to all for your emails, and I will be back to doing the daily blogs, starting later today.
Thank you to all for your emails, and I will be back to doing the daily blogs, starting later today.
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