The following was written by a Tarlov Cyst Disease Patient (TCD), who felt the need to share her own personal thoughts based on her own personal experience of living with this disease.
This post refers to some of the more common experiences that TCD Patients live with everyday. Hopefully some of you will find this post and be grateful for the information within. I hope it helps you find answers and understanding, but most of all I hope it helps you find some peace and relief; A gift that only the truth can bring.
I just feel compelled to share this for the post I've read where tramadol had been taken so much it didn't work anymore. I'm not a doctor so I can only go with my own experience with Tramadol.
I've been on Tramadol for almost two years now. For the first year or so I thought it wasn't really helping. And when I think a drug isn't doing me any good, I begin tapering off that drug. I did the same with neurontin. If it isn't helping, then I"m not taking it.
I hate taking drugs!
I'd begin to taper off the Tramadol, or the Neurontin, and slowly I'd realize I was in a whole lot more pain. I went back up to my regular dosage and I was no longer in as much pain. It took the "edge" off as many of us describe it.
Tramadol was meant to be taken every day regularly at the same time. I take the full 200 mg a day. I set my alarm clock to make sure I take it at the same time every day. When I was forgetful and not regimented in taking my medications, I had more problems.
On to another topic;
If you have children, don't hide your disability from them--all you teach them is to hide their own pain and not get help when they need it. Instead, show them how strong you are and how there are times when you're down, and times when you are up. Teach them that people are valuable, and loving.
People have so much to give. Even if a person can't walk, or maybe they can't walk more than a few feet, and often have to sit down.
Count your blessings!
I take vicodin. I take it every day at the same time whether I think I need it or not. Do I have a tolerance to hydrocodone after all these years taking it? Yes, I do. I don't get the drugged feeling from it that I used to get. What I discovered, however, is that doesn't mean it isn't doing its job. I've tried backing off the Vicodin because I thought it wasn't working. I couldn't feel that narcotic reaction, but I discovered that when I backed off the Vicodin, my pain level increased.
So here's the truth--
Unfortunately there's no pill, or miracle drug capable of making us totally pain free. We have Tarlov cysts. There is no way to get around that.
There are drug combinations that some of us can take that might help take the edge off. Then there's others, like Claudine for instance, who cannot take any drugs and had to learn to cope in other ways.
I hope I'm not coming off harshly. I truly am not a harsh person. I tend to call it like I see it, however, and I want to share what I have learned in this last several years.
We are not broken! We're valuable assets to society, our friends and our families. We are excellent role models to our children.
Ladies, we are strong and beautiful people. We cope each and every day with pain that would put most people down. Don't hide your strengths!
If you have friends who still don't "get it" and ask you to do things you cannot do--kick them to the curb. If they can't see you, love you and believe in you, then they are not friends.
The same goes for your family--if they aren't supportive then they need to become that way and fast. The way they become supportive is by you setting boundaries and saying, "NO!"
I know that I am very fortunate to have friends and family who are supportive of me. I bless them each and every day.
I know I am fortunate to have spent my life learning what makes me, me; above and beyond what I "do".
I am fortunate not to have children who need me. I know it is all scary and some days you wonder if you will ever have another day where you aren't "spoonless". You are all so much more than your pain.
TeriK
This post refers to some of the more common experiences that TCD Patients live with everyday. Hopefully some of you will find this post and be grateful for the information within. I hope it helps you find answers and understanding, but most of all I hope it helps you find some peace and relief; A gift that only the truth can bring.
Those of us diagnosed with Symptomatic, Tarlov Cyst Disease know first hand how painful and destructive this diagnosis can be.
The fear and lack of understanding makes it a disease capable of stealing lives and destroying families, but a diagnosis of Tarlov Cyst Disease does't have to mean the end of your life. It can easily be the beginning of a new one.....
The fear and lack of understanding makes it a disease capable of stealing lives and destroying families, but a diagnosis of Tarlov Cyst Disease does't have to mean the end of your life. It can easily be the beginning of a new one.....
It all comes down to your own personal view;
Is the cup half full?
Or
Is the cup half empty?
_____________________________________________
Written and submitted by: Teri K, TCD Patient, California. USA.
I know I don't post a whole lot or even kick in and respond a lot these days. We all know how that comes about; because we all go through up times and down times. I do want to say something, though, because so many people are having some real painful down times.
Some of us are new to TC and others have been suffering with TC and so many other types of problems for years and years and years.
When I was first diagnosed I figured something would come along and make the pain go away. After about 6 months, while I was up at 3 AM, crying because I was in so much pain and it was still 3 hours to my next dose of Vicodin, I suddenly realized how it was that people accidentally OD'd on their narcotics. I also realized how people became addicted to their narcotics--almost anything seemed better than what I was feeling right at that moment. Fortunately, I had my cry and then reminded myself there was more to me than my pain. Over the last 2 years and 7 months of living with TC disease, I've pretty much found a mid-place where I can survive and the drug regimen that
will keep me there.
Some of us are new to TC and others have been suffering with TC and so many other types of problems for years and years and years.
When I was first diagnosed I figured something would come along and make the pain go away. After about 6 months, while I was up at 3 AM, crying because I was in so much pain and it was still 3 hours to my next dose of Vicodin, I suddenly realized how it was that people accidentally OD'd on their narcotics. I also realized how people became addicted to their narcotics--almost anything seemed better than what I was feeling right at that moment. Fortunately, I had my cry and then reminded myself there was more to me than my pain. Over the last 2 years and 7 months of living with TC disease, I've pretty much found a mid-place where I can survive and the drug regimen that
will keep me there.
I just feel compelled to share this for the post I've read where tramadol had been taken so much it didn't work anymore. I'm not a doctor so I can only go with my own experience with Tramadol.
I've been on Tramadol for almost two years now. For the first year or so I thought it wasn't really helping. And when I think a drug isn't doing me any good, I begin tapering off that drug. I did the same with neurontin. If it isn't helping, then I"m not taking it.
I hate taking drugs!
I'd begin to taper off the Tramadol, or the Neurontin, and slowly I'd realize I was in a whole lot more pain. I went back up to my regular dosage and I was no longer in as much pain. It took the "edge" off as many of us describe it.
Tramadol was meant to be taken every day regularly at the same time. I take the full 200 mg a day. I set my alarm clock to make sure I take it at the same time every day. When I was forgetful and not regimented in taking my medications, I had more problems.
On to another topic;
If you have children, don't hide your disability from them--all you teach them is to hide their own pain and not get help when they need it. Instead, show them how strong you are and how there are times when you're down, and times when you are up. Teach them that people are valuable, and loving.
People have so much to give. Even if a person can't walk, or maybe they can't walk more than a few feet, and often have to sit down.
Count your blessings!
I take vicodin. I take it every day at the same time whether I think I need it or not. Do I have a tolerance to hydrocodone after all these years taking it? Yes, I do. I don't get the drugged feeling from it that I used to get. What I discovered, however, is that doesn't mean it isn't doing its job. I've tried backing off the Vicodin because I thought it wasn't working. I couldn't feel that narcotic reaction, but I discovered that when I backed off the Vicodin, my pain level increased.
So here's the truth--
Unfortunately there's no pill, or miracle drug capable of making us totally pain free. We have Tarlov cysts. There is no way to get around that.
There are drug combinations that some of us can take that might help take the edge off. Then there's others, like Claudine for instance, who cannot take any drugs and had to learn to cope in other ways.
I hope I'm not coming off harshly. I truly am not a harsh person. I tend to call it like I see it, however, and I want to share what I have learned in this last several years.
We are not broken! We're valuable assets to society, our friends and our families. We are excellent role models to our children.
Ladies, we are strong and beautiful people. We cope each and every day with pain that would put most people down. Don't hide your strengths!
If you have friends who still don't "get it" and ask you to do things you cannot do--kick them to the curb. If they can't see you, love you and believe in you, then they are not friends.
The same goes for your family--if they aren't supportive then they need to become that way and fast. The way they become supportive is by you setting boundaries and saying, "NO!"
I know that I am very fortunate to have friends and family who are supportive of me. I bless them each and every day.
I know I am fortunate to have spent my life learning what makes me, me; above and beyond what I "do".
I am fortunate not to have children who need me. I know it is all scary and some days you wonder if you will ever have another day where you aren't "spoonless". You are all so much more than your pain.
TeriK
