After spending yet another day in horrific pain I made a phone call to my neurosurgeon at Johns Hopkins on August 18, 2010 (Baltimore, MD, USA) and asked how soon I can have the Glycerol Rhizotomy. My doctor’s physician assistant promptly returned my phone call and stated that there is availability on September 16th to which I exclaimed, “Sign me up!” I received a phone call the next day explaining that I would have to meet with the doctor before I could have the surgery and I was given the date and time of that appointment. I thought that once I was given a date and time for my surgery that I was “good to go” but I didn’t quite anticipate the other steps that were needed. I was given a time for my pre-operative appointment with the anesthesiologist and appointment with the radiologist for full head x-ray. This was all coming together very nicely and I thought I was just ready to go but then my husband reminded me that I needed a hotel. I was overwhelmed with the idea of going through the 12 page list of hotels that Johns Hopkins gave me and was quite thankful when my mother offered to call. She went through the whole list of hotels and asked each one of them their daily rates, the price for parking, if they had a shuttle to/from the hotel and hospital and made a list of them all. After finding the most suitable hotel for what we needed it for, close enough to the hospital for convenience yet quiet enough for recovery, we booked it.
Surgery date – check
Doctor appointment – check
Pre-operative appointment with anesthesiologist – check
X-ray appointment – check
Hotel reservation - check
Transportation – check
It seems like I have everything in line for my first surgical procedure to attempt to relieve me of trigeminal neuralgia pain. I feel, for the first time in eight months, that I can relax and not worry about my next course of action. I just need to make it through my pain attacks for the next 25 days. Sounds easy, right? Over the next 25 days I have a lot planned. I will be finishing out another month’s end at work, which is extremely busy for us, I will be traveling 430 miles by car (thanks to my youngest brother for flying down to drive me those 430 miles), attending my best friend’s wedding (my twin brother’s wedding), traveling those 430 miles again to return home (this time my husband will be with me to drive me home), make it through another busy work week, and then travel 5 hours to Baltimore for my appointments and surgery. That makes me tired just typing all of that information but I cannot wait for that week in September. This is what I have been waiting for. I have been longing for the day for a medical procedure to help rid me of the pain, which allows me to come off of the medications that make me feel like I have the brain capacity of a two year old. This is just one step closer for me to be ME again.
Sunday, August 22, 2010
Sunday, August 15, 2010
Invisible
Editor's note:
An entry from our first Guest Blogger.
You can request to become a guest blogger as well by emailing your blog entry to mytnpain@gmail.com for approval. Be sure to include your name (or let me know if you want to use a nickmane or remain anonymous) and city/state/country.
**************************************************************************************************
It's there, but no one can see it. We appear perfectly normal, and yet we are not.
The only evidence of this pain is our response to it. Is it the way we stop talking mid sentence while invisible ice picks jab us in the face, taking our breath away? Is it our heads turning downwards or covering up to escape the cool wind; refreshing for others, but torture for those of us with TN? Is it our absence at work, family gatherings or other social outings? Or is it this new version of ourselves - the one who looks fine but fakes health and happiness to get through an event, in order to avoid discussions about something that is difficult for even us to understand? Or maybe we dismiss concerns or questions with a wave of the hand and a “I have a headache” or whatever generic phrase we have found useful. We all have them, those simple, meaningless explanations. Who of us launches into the full details of trigeminal neuralgia? Few people have ever even heard of it, let alone know how to say it, explain it or certainly understand it. So what do you do, what do you say, to get through those moments? How do you explain such a complicated condition? Maybe we can learn from each other as we have been doing on forums, journals and now blogs all along. Maybe discovering key words, or the perfect phrase just might be the ticket to making life a little less difficult for someone.
One thing I have learned is this: “We are trying to live in a normal world with an
abnormal condition.” These genius words are not mine, but they have changed me. (thank you Jady) Like a lightbulb going off, they have helped me begin to accept things. How can my life possibly go on as it was before when I am not as I was before? If it was a broken limb or another visible ailment, we would not hesitate to modify our lives to make things work better or expect support from friends, family or coworkers. We would not have to ask for empathy or to explain. People would just accept our condition and make whatever adjustments were necessary. Perhaps if we want others to understand and accept the limitations TN creates, then we need to be willing to do the same ourselves. They can't understand us if we don't give them the tools to at least try. Maybe we all need to take the time to come up with a simple explanation for casual acquaintances to make life easier. Close friends and family probably don't need one. They'll ask questions and learn with us as we go through this journey. Hopefully they will share that with others so we don't have to.
Of course we owe no one an explanation. We don't have to say a word. We can continue to cover our heads, avoid parties and loud events, refrain from foods and beverages that are bothersome and other triggers that make our life more difficult and bring us pain. Telling someone won't make us better. But, it might make life easier,
cause others to stop and think, to at least be aware of the things that make our life more challenging, to clear the path for us so to speak, to be our support team. We don't owe anyone anything, but we do owe ourselves - to do what's best for us. And for those who support us. Wouldn't you do the same for someone else?
Please share how you “explain” this invisible condition to people, how you find ways to get support and understanding in the normalcy of life that continues to whirl around you.
-Submitted by Painterchic from North Carolina, USA
An entry from our first Guest Blogger.
You can request to become a guest blogger as well by emailing your blog entry to mytnpain@gmail.com for approval. Be sure to include your name (or let me know if you want to use a nickmane or remain anonymous) and city/state/country.
**************************************************************************************************
It's there, but no one can see it. We appear perfectly normal, and yet we are not.
The only evidence of this pain is our response to it. Is it the way we stop talking mid sentence while invisible ice picks jab us in the face, taking our breath away? Is it our heads turning downwards or covering up to escape the cool wind; refreshing for others, but torture for those of us with TN? Is it our absence at work, family gatherings or other social outings? Or is it this new version of ourselves - the one who looks fine but fakes health and happiness to get through an event, in order to avoid discussions about something that is difficult for even us to understand? Or maybe we dismiss concerns or questions with a wave of the hand and a “I have a headache” or whatever generic phrase we have found useful. We all have them, those simple, meaningless explanations. Who of us launches into the full details of trigeminal neuralgia? Few people have ever even heard of it, let alone know how to say it, explain it or certainly understand it. So what do you do, what do you say, to get through those moments? How do you explain such a complicated condition? Maybe we can learn from each other as we have been doing on forums, journals and now blogs all along. Maybe discovering key words, or the perfect phrase just might be the ticket to making life a little less difficult for someone.
One thing I have learned is this: “We are trying to live in a normal world with an
abnormal condition.” These genius words are not mine, but they have changed me. (thank you Jady) Like a lightbulb going off, they have helped me begin to accept things. How can my life possibly go on as it was before when I am not as I was before? If it was a broken limb or another visible ailment, we would not hesitate to modify our lives to make things work better or expect support from friends, family or coworkers. We would not have to ask for empathy or to explain. People would just accept our condition and make whatever adjustments were necessary. Perhaps if we want others to understand and accept the limitations TN creates, then we need to be willing to do the same ourselves. They can't understand us if we don't give them the tools to at least try. Maybe we all need to take the time to come up with a simple explanation for casual acquaintances to make life easier. Close friends and family probably don't need one. They'll ask questions and learn with us as we go through this journey. Hopefully they will share that with others so we don't have to.
Of course we owe no one an explanation. We don't have to say a word. We can continue to cover our heads, avoid parties and loud events, refrain from foods and beverages that are bothersome and other triggers that make our life more difficult and bring us pain. Telling someone won't make us better. But, it might make life easier,
cause others to stop and think, to at least be aware of the things that make our life more challenging, to clear the path for us so to speak, to be our support team. We don't owe anyone anything, but we do owe ourselves - to do what's best for us. And for those who support us. Wouldn't you do the same for someone else?
Please share how you “explain” this invisible condition to people, how you find ways to get support and understanding in the normalcy of life that continues to whirl around you.
-Submitted by Painterchic from North Carolina, USA
Friday, August 13, 2010
A Journey for Hope
I was unable to sleep as thought after thought went through my mind. “Would he say that I have trigeminal neuralgia? Would he tell me that I have nothing at all and that I should see a psychiatrist? Would he tell me it is something in between both of those thoughts?”
When the alarm finally went off at 4:30am on August 8, 2010, I was ecstatic as my husband and I began our journey. A journey that started almost eight months ago that has left me in anguish and my husband in complete frustration. We were headed for answers to our many questions. We were headed to a possible solution to rid me of pain. We were headed off to Baltimore, MD for an appointment with one of the most famous names in neurosurgery.
Upon arriving in Baltimore we tried to make a “vacation” out of our five-hour drive by visiting the National Aquarium, touring the Inner Harbor and the historic boats that were docked there and trying to find Baltimore’s best crab cake. In between all of the tourist attractions I couldn’t help but think, “Is this going to be the appointment we have been waiting for, where we would finally hear of a treatment plan? Or, is this going to be a trip where we look back and say, ‘At least we were able to have a mini-vacation!’” I worried every minute of that trip, hoping that Tuesday (August 10, 2010) would be the day that ends my misery and can allow me to focus on what lies ahead.
When out to lunch, the day before my appointment, I couldn’t help but notice a newlywed couple sitting at the end of the bar. I offered them a warm congratulations and continued to eat my mashed potatoes with a warm glass of water, through a bendable straw of course. While they tried not to stare at me I could tell that the noticed my ear plug sticking out of my ear (who couldn’t miss it? It was bright blue!) and the water that was dripping down my face as I did my best to eat my lunch. Then, the kind woman asked me, “So, what brings you to Baltimore?” Well before I could chime in my loving husband shouted, “We wanted to visit the Inner Harbor. Plus, she has a doctor’s appointment tomorrow at Johns Hopkins.” He is always quick to come to my defense and, not knowing if she was going to say something about my ear plug or peculiar “lunch” he tried to explain the reason for our pilgrimage. The woman went back to enjoying her champagne with her new husband but I could tell she wasn’t intimidated by my husband’s response and rather curious to know more. She then went on to explain how she is an ultrasound technician at a nearby hospital and was wondering who I would be seeing in the “ENT department.” I had to then explain to her that I was experiencing some nerve damage on the left side of my face and that the ear plug was only in to try and eliminate any loud noises which trigger the pain. I then explained that I would be seeing a doctor in the neurosurgery department and, of course, she wanted to know who I would be seeing there. I explained that I would be seeing Dr. Ben Carson and before I could say anything more she gasped, “Ben Carson? Ben Carson! BEN CARSON!!!!” I confirmed that is the doctor I will be seeing and she went on to kindly “yell” at her husband for about an hour for not knowing who the great Ben Carson is.
Well, if I wasn’t nervous and anxious enough about my visit I sure was now. This woman didn’t even work at a Johns Hopkins, yet she knew of the man I was scheduled to see the following morning.
After all the exciting things we did on Monday, I was hoping I would be able to fall asleep (and stay asleep) until the alarm sounded at 6am the next day. Boy was I wrong! When the alarm finally went off I jumped into the shower and packed the car and off we were. After driving through the Inner Harbor of Baltimore we drove around and around and around and ... well, you get the picture ... around! We got lost but eventually found the amazing red bricks of Johns Hopkins Hospital and Medical Campus. Upon checking-in I anticipated waiting in the waiting room for awhile until I was called back to meet the Dr. Carson. Instead, I was given a sheet of paper with directions and told to follow them for my appointment. I didn’t think anything of the directions I was given as I assumed I just arrived at the wrong location as it was a feat just to get to the hospital. After following the directions that were something like, “Go back down the elevator to the first floor, Take a right and go up the long stairs, then the short stairs, around the corner and past the gift shop, up some more stairs and then take the elevator to the 8th floor” I finally arrived to my doctor’s office. No, I don’t mean the room where I will be greeted with a receptionist and a variety of magazines to choose from. I literally arrived in his office! I was taken into the “exam room” which was really just a conference room. I was then greeted by Dr. Carson’s WONDERFUL physician’s assistant, Ms. Carol James, and given a thorough examination and explained my history that led to me being in their office that day. She then explained that she would go look at my MRI and be back in a few minutes.
About five minutes later I looked up to see a man that looked so familiar to me. A man that I have read so much about. A man whose book was turned into a Hollywood film. A man I have been longing to meet. I thought he would be just dying to know more about me and my story but instead he looked over to my husband and began questioning him. I was confused for a few minutes and almost blurted out, “Hey, Dr. Carson, I’m the one who has trigeminal neuralgia!” but then I stopped and listened to the questions He was asking. “How is she tolerating the pain? Do you think the medication is helping her? How does she act on the medicine?” I guess they were all important questions because he turned to Ms. James and said, “I’ll do a Glycerol Rhizotomy” and he then explained the procedure, stood up and shook our hands, and off he went in his full surgical regalia with mask. Those were the two words I have been longing to hear. To me, those two words were the beginning to ending my pain.
Ms. James went on to explain what the procedure entails and how this could be my saving grace before answering our laundry list of other questions and concerns. She was the most patient, educated, gifted, and loving medical professional I had met along my journey, and probably will ever meet in my lifetime. Just before we left she gave me a big hug and said, “Welcome to the family and hang in there hun because there is hope at the end of your tunnel.” And, for the first time in almost eight months, I truly feel that I found the place I belong (Johns Hopkins) that will make me become ME again. My “vacation” had, in fact, become the wonderful journey towards hope I’d been longing for!
When the alarm finally went off at 4:30am on August 8, 2010, I was ecstatic as my husband and I began our journey. A journey that started almost eight months ago that has left me in anguish and my husband in complete frustration. We were headed for answers to our many questions. We were headed to a possible solution to rid me of pain. We were headed off to Baltimore, MD for an appointment with one of the most famous names in neurosurgery.
Upon arriving in Baltimore we tried to make a “vacation” out of our five-hour drive by visiting the National Aquarium, touring the Inner Harbor and the historic boats that were docked there and trying to find Baltimore’s best crab cake. In between all of the tourist attractions I couldn’t help but think, “Is this going to be the appointment we have been waiting for, where we would finally hear of a treatment plan? Or, is this going to be a trip where we look back and say, ‘At least we were able to have a mini-vacation!’” I worried every minute of that trip, hoping that Tuesday (August 10, 2010) would be the day that ends my misery and can allow me to focus on what lies ahead.
When out to lunch, the day before my appointment, I couldn’t help but notice a newlywed couple sitting at the end of the bar. I offered them a warm congratulations and continued to eat my mashed potatoes with a warm glass of water, through a bendable straw of course. While they tried not to stare at me I could tell that the noticed my ear plug sticking out of my ear (who couldn’t miss it? It was bright blue!) and the water that was dripping down my face as I did my best to eat my lunch. Then, the kind woman asked me, “So, what brings you to Baltimore?” Well before I could chime in my loving husband shouted, “We wanted to visit the Inner Harbor. Plus, she has a doctor’s appointment tomorrow at Johns Hopkins.” He is always quick to come to my defense and, not knowing if she was going to say something about my ear plug or peculiar “lunch” he tried to explain the reason for our pilgrimage. The woman went back to enjoying her champagne with her new husband but I could tell she wasn’t intimidated by my husband’s response and rather curious to know more. She then went on to explain how she is an ultrasound technician at a nearby hospital and was wondering who I would be seeing in the “ENT department.” I had to then explain to her that I was experiencing some nerve damage on the left side of my face and that the ear plug was only in to try and eliminate any loud noises which trigger the pain. I then explained that I would be seeing a doctor in the neurosurgery department and, of course, she wanted to know who I would be seeing there. I explained that I would be seeing Dr. Ben Carson and before I could say anything more she gasped, “Ben Carson? Ben Carson! BEN CARSON!!!!” I confirmed that is the doctor I will be seeing and she went on to kindly “yell” at her husband for about an hour for not knowing who the great Ben Carson is.
Well, if I wasn’t nervous and anxious enough about my visit I sure was now. This woman didn’t even work at a Johns Hopkins, yet she knew of the man I was scheduled to see the following morning.
After all the exciting things we did on Monday, I was hoping I would be able to fall asleep (and stay asleep) until the alarm sounded at 6am the next day. Boy was I wrong! When the alarm finally went off I jumped into the shower and packed the car and off we were. After driving through the Inner Harbor of Baltimore we drove around and around and around and ... well, you get the picture ... around! We got lost but eventually found the amazing red bricks of Johns Hopkins Hospital and Medical Campus. Upon checking-in I anticipated waiting in the waiting room for awhile until I was called back to meet the Dr. Carson. Instead, I was given a sheet of paper with directions and told to follow them for my appointment. I didn’t think anything of the directions I was given as I assumed I just arrived at the wrong location as it was a feat just to get to the hospital. After following the directions that were something like, “Go back down the elevator to the first floor, Take a right and go up the long stairs, then the short stairs, around the corner and past the gift shop, up some more stairs and then take the elevator to the 8th floor” I finally arrived to my doctor’s office. No, I don’t mean the room where I will be greeted with a receptionist and a variety of magazines to choose from. I literally arrived in his office! I was taken into the “exam room” which was really just a conference room. I was then greeted by Dr. Carson’s WONDERFUL physician’s assistant, Ms. Carol James, and given a thorough examination and explained my history that led to me being in their office that day. She then explained that she would go look at my MRI and be back in a few minutes.
About five minutes later I looked up to see a man that looked so familiar to me. A man that I have read so much about. A man whose book was turned into a Hollywood film. A man I have been longing to meet. I thought he would be just dying to know more about me and my story but instead he looked over to my husband and began questioning him. I was confused for a few minutes and almost blurted out, “Hey, Dr. Carson, I’m the one who has trigeminal neuralgia!” but then I stopped and listened to the questions He was asking. “How is she tolerating the pain? Do you think the medication is helping her? How does she act on the medicine?” I guess they were all important questions because he turned to Ms. James and said, “I’ll do a Glycerol Rhizotomy” and he then explained the procedure, stood up and shook our hands, and off he went in his full surgical regalia with mask. Those were the two words I have been longing to hear. To me, those two words were the beginning to ending my pain.
Ms. James went on to explain what the procedure entails and how this could be my saving grace before answering our laundry list of other questions and concerns. She was the most patient, educated, gifted, and loving medical professional I had met along my journey, and probably will ever meet in my lifetime. Just before we left she gave me a big hug and said, “Welcome to the family and hang in there hun because there is hope at the end of your tunnel.” And, for the first time in almost eight months, I truly feel that I found the place I belong (Johns Hopkins) that will make me become ME again. My “vacation” had, in fact, become the wonderful journey towards hope I’d been longing for!
Wednesday, August 4, 2010
Alone in this Big World
No one understands. No matter how you explain it or how others explain it no one understands. It seems like the more often people say, “I understand what you’re going through…” the more and more I get frustrated. Until you experience the pain day after day, night after night, minute after minute, please don’t tell me, “I understand.” Now I know that I shouldn’t say that NO ONE understands because other trigeminal neuralgia sufferers do understand the pain and suffering I am going through. It is my hope that the dedication to this blog will allow a place for other TN sufferers to show me that they do understand what I’m going through.
I have tried to explain to my family what I am going through. They have read up on TN to familiarize themselves with this “condition” but they still don’t understand. They will tell me daily that they understand what I am going through and each time I hear that I want to say, “Please, let me stab you in the face with an ice pick” then they can tell me that they know what the pain is like but until they are struck with it time and time again they still won’t truly understand. Feeling isolated from my family is not fun.
Co-workers. They will tell me that they are sorry I don’t feel well. My boss will tell me the same thing. But should I put a blanket over my face to block the air condition from blowing on me they are the first to laugh. I explain to them, like I have many times before, that I have a disability and it is something that helps me. Still, they laugh. To me this is them all laughing at a disabled person and it is down right ignorant. They don’t laugh at an overweight person that is eating. They don’t laugh at a soldier who lost his leg at war and walks with a prosthesis. Yet when one places a blanket over their face to prevent pain caused by air blowing, they laugh? This is probably the same person that prays for his or her family member’s health each evening before bed. Another example of loneliness.
The pain is intensified by cold/warm air blowing on my face. Loud noises also cause pain. At times I find myself hibernating in my bedroom because I can control the noise level and where the air the air is blowing or how to protect myself from my air conditioner and ceiling fan. Still feeling alone.
For those suffering from trigeminal neuralgia I am reaching out to you to let you know that you are not alone in this big world. I am here with you, suffering right along side of you. For those that had trigeminal neuralgia and have since been cured, please reach out to us currently suffering and encourage us during this difficult time. You have probably witnessed the same type of pain as we are experiencing now, and know what we are going through. If you are a family member or a friend who has a trigeminal neuralgia sufferer please reach out to that loved one and tell him or her that you may not understand (actually saying this alone could be the most supportive thing you could say) what they are going through but that you are there to support them. If you are surrounded by someone who suffers from trigeminal neuralgia ask how you can help him or her instead of making them the victim of your jokes. Help to make them realize that although they may feel alone with the pain they are being supported. Help the sufferer realize that he or she is not alone in this big world!
I have tried to explain to my family what I am going through. They have read up on TN to familiarize themselves with this “condition” but they still don’t understand. They will tell me daily that they understand what I am going through and each time I hear that I want to say, “Please, let me stab you in the face with an ice pick” then they can tell me that they know what the pain is like but until they are struck with it time and time again they still won’t truly understand. Feeling isolated from my family is not fun.
Co-workers. They will tell me that they are sorry I don’t feel well. My boss will tell me the same thing. But should I put a blanket over my face to block the air condition from blowing on me they are the first to laugh. I explain to them, like I have many times before, that I have a disability and it is something that helps me. Still, they laugh. To me this is them all laughing at a disabled person and it is down right ignorant. They don’t laugh at an overweight person that is eating. They don’t laugh at a soldier who lost his leg at war and walks with a prosthesis. Yet when one places a blanket over their face to prevent pain caused by air blowing, they laugh? This is probably the same person that prays for his or her family member’s health each evening before bed. Another example of loneliness.
The pain is intensified by cold/warm air blowing on my face. Loud noises also cause pain. At times I find myself hibernating in my bedroom because I can control the noise level and where the air the air is blowing or how to protect myself from my air conditioner and ceiling fan. Still feeling alone.
For those suffering from trigeminal neuralgia I am reaching out to you to let you know that you are not alone in this big world. I am here with you, suffering right along side of you. For those that had trigeminal neuralgia and have since been cured, please reach out to us currently suffering and encourage us during this difficult time. You have probably witnessed the same type of pain as we are experiencing now, and know what we are going through. If you are a family member or a friend who has a trigeminal neuralgia sufferer please reach out to that loved one and tell him or her that you may not understand (actually saying this alone could be the most supportive thing you could say) what they are going through but that you are there to support them. If you are surrounded by someone who suffers from trigeminal neuralgia ask how you can help him or her instead of making them the victim of your jokes. Help to make them realize that although they may feel alone with the pain they are being supported. Help the sufferer realize that he or she is not alone in this big world!
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