I know I haven't posted in a while. The absence of posts is almost symbolic of what life is like with a chronic illness. People forget..... The familiar philosophy "out of sight, out of mind," can describe what I am referring to.
Meanwhile, people go about their lives and I lay here, the same as always. Stagnant. Stuck like a prisoner in my own body and mind. I think of how much time has passed since I last worked, graduated with my doctorate, went to dinner with a friend, did anything that remotely resembles an activity that the "former" Amanda would have done. That appears to be how time is now measured in my world. How long has it been since I last did this or that?
Lately the fatigue has been so severe that I have had no energy to function. People who aren't chronically ill cannot truly comprehend what this means. I will try and describe it in more specific terms, but it is unfortunately one of those things that unless you experience it, you cannot really grasp the meaning. This means my daily life consists literally of laying in bed. Every day all day. All night. I push myself to go and get out of the house, but when the fatigue hits this badly, it becomes super challenging to do that. Getting out and doing things becomes more and more infrequent and the norm is laying in bed. Regardless of the amount of time I spent resting, it never feels like it is enough to quench the thirst that my body feels it needs. No amount of sleep is ever enough to replenish my body enough to boost my energy.
An entire weekend passes. Then a week. Two weeks. I look around me and observe the things that others are capable of accomplishing and I think WOW! I am here resting, thinking I will be better in just a few days. I have to. No one can possibly feel this exhausted by doing nothing but rest. Of course I do things to keep busy, but my body is not active. A few days come and go and no change. "Unhealth," or illness to me is the way health is to "normal" people. It is backwards. Most people spend the majority of their time healthy while it is the complete opposite for me. I think that used to be me, those people milling around in the world. It's difficult for people to comprehend this aspect of a chronic illness-fatigue. Hell, it's hard for me to understand how my own body can possibly feel so tired even after sleeping and resting constantly.
I have things on my "to-do" list that will roll over from one day to the next, making me feel incredibly lazy. I understand, at least on a cognitive level, that I am not lazy. I would never have been able to get my doctorate if I were a lazy individual. But as the time passes, and the gap increases between the time that I graduated and now, the window of opportunities in my mind closes that much more. The hope that used to reside inside me that I would somehow find a way to work within the limitations that come with this disease quells.
I once was feeling better-felt like I had found another purpose. That the reason I was meant to suffer with this horrible illness was so that it would lead me to my true purpose. I am now questioning that. I again feel lost. I know it must be an important part of my process. Whenever we question something it usually strengthens whatever it is we are questioning that much more in the long run. Either that or it will lead you on a completely different path in life. I guess I will find out. I know I need to TRUST THE PROCESS....but it is so hard. Especially hard when I feel so alone and feel like most people don't understand what I go through every day. How hard it is just to keep it together.
I feel extremely overwhelmed because I cannot do what I normally can do as a result of pain and fatigue. I feel lost and out of control. I had so much potential. I am so tired of being sick and tired. I hate questioning "What could have been?"
"What would I be doing if I didn't have Behcet's Disease?"
"What would I look like?"
"Where would I live?"
"Would I be married?"
"Would I be a mother?"
"Would I be happy?"
"Would things have been better..... or worse?"
Maybe BD saved me from a fate far worse than this. Although that is difficult to imagine, it's not impossible. It is, however, impossible to truly ever know the answers to these "What if?" questions. I must therefore try to learn to do something that I have been struggling to do for years: to let go of the me that was and accept the me that is.
Tuesday, March 8, 2016
Friday, October 9, 2015
Being Me, A Poem, By Amanda Fessler
A past unrealized
A future uncertain
Forever altered by an incurable disease.
A past unrealized
A future uncertain
Inability to be who I imagined I'd be.
So many things unable to come to fruition
Can I have a family, a career, a life
An identity outside this disease?
Who am I without Behcet's Disease?
I am me. The same me before.
A different me after.
For this disease has forever changed me in a positive way
Because underneath all the insecurities, the doubt, the unfulfilled dreams
Is a better me. More than I imagined I'd be, not less.
When I look in the mirror
Instead of seeing who I used to be
I see who I am.... Now.
And that's MORE than enough.
A future uncertain
Forever altered by an incurable disease.
A past unrealized
A future uncertain
Inability to be who I imagined I'd be.
So many things unable to come to fruition
Can I have a family, a career, a life
An identity outside this disease?
Who am I without Behcet's Disease?
I am me. The same me before.
A different me after.
For this disease has forever changed me in a positive way
Because underneath all the insecurities, the doubt, the unfulfilled dreams
Is a better me. More than I imagined I'd be, not less.
When I look in the mirror
Instead of seeing who I used to be
I see who I am.... Now.
And that's MORE than enough.
I'm Back, The Sequel
I haven't posted since May, I believe. I have been so busy with the Facebook support groups that I run to assist others who live with Behcet's Disease that I have neglected my blog. I am trying to get back into it because I feel writing is such an important way to appropriately and effectively communicate what it is like to live with a chronic illness every day.
People live their lives and as they go about their days, working, taking care of kids, going on vacation, etc... We live like it is Groundhog Day. In December, it will be 7 years since I have moved back to Illinois (after living in the wonderful, sunny West Coast). SEVEN YEARS! That's seven years of laying in bed every day, doctors appointments, ER visits, hospital admissions, trying new medications and waiting to see if they will work. Trying new medications to counteract the side effects from the first medications. Seven years of depression and anxiety related to living with an illness that will never go away. Seven years of being isolated from normal social activity. Seven years of not working in the career that I spent 10 years getting a doctorate in. Seven years of not being me. Seven years of wishing I were the "old" me. Seven years all culminating to this point, which is finally the beginning of accepting who I am - exactly the way that I am now. While others are out there experiencing what the world has to offer, I am confined to these four walls. I do get out of the house, and way more than I used to. Not because I feel great. I do feel better than I have in years thanks to the combo of meds I am on, but I don't feel well enough to function. I still experience constant pain and fatigue which prevent me from being able to do things that I would love to do. I have the motivation to do them, but not the ability to do them because my health prevents it from being possible. But I push myself to go out and do things. In previous years I would not push myself. I know that was part of the process, a necessary part that I had to experience in order to get to this very juncture.
Yet as I witness (or think about) others out in this big world doing things that I have, and continue to, dream of doing, I find myself saddened. I feel like a small child watching from inside the house, peering out of a window as the older kids play a game I am not permitted to play. Like this game of life is not suited for me. I don't qualify. That is one of the most difficult things to cope with on a daily basis. To think of what I could have done in seven years? I know that's not healthy, the "could-have and should-have" are unhealthy and unproductive constructs that lead us down a path of self destruction and continue pushing us toward a downward spiral of depression and despair. However, it is still my reality. I am not married. I don't have kids. I live with my mother at the age of 36. Where has the time gone?
At the same time, I have devoted many years to being an advocate and helping others with Behcet's Disease. I have found my purpose in life, or at least one of them. And that has been a true gift. A reason to get up in the morning is something that I myself need in order to go on. When I was going through the process of getting diagnosed, I was all alone in Arizona. I say alone because although I had a great group of friends and was in grad school and had built a life that I LOVED, my family was across the country. I was dealing with a potentially life changing diagnosis on my own because I only told a select few people about what was going on. I got judged because I had to call in sick to work or my internship. People thought I was just lazy. Yet I continued to get straight A's, and I got my first choice internship in a highly competitive profession. I fought and I fought. When I finally did receive that diagnosis of BD, and had been living with it for a few years, I wondered will I ever meet another living being who also struggles with this rare disease? When I started meeting others, I vowed to reach out to others so that no one would have to cope with this illness alone. I love helping anyone with BD, but those who are newly diagnosed? I have a special connection to those people.... To get a diagnosis of an incurable illness that will change your life forever and then sent out the door..... as if nothing has happened? That's not right. I strongly believe that doctors who diagnose chronic illnesses should have a therapist/clinical psychologist meet with that individual prior to letting them leave the office. The newly diagnosed individual needs to be able to process what just happened. I wish I could be that person. I wish I could be "on call" for people who are newly diagnosed with BD all over the world. If anyone knows how I can go about doing this, please let me know! I know I can't be there in person, but with Skype and face time etc, it's so easy to have a personal conversation.
I am rambling. But I wanted to highlight a few important points. One, living with a chronic illness is incredibly difficult while friends and family and maybe coworkers are out there living. That doesn't mean others don't have issues. I am merely expressing my own personal process in terms of how challenging it is to not be capable of engaging in myriad desired activities. Secondly, I have enjoyed and feel honored to be able to help others who live with Behcet's Disease daily. I have learned so much about perspective, compassion, kindness, and most importantly, that I actually do know a great deal of information that can, and has, helped so many people. I sometimes think that I don't know all that much. But then I think of where I was when I got diagnosed. I surely didn't know what I know now. Reminding myself that allows me to reach out to others and provide them with information, resources, and support. I have learned a little kindness goes a long way and try to give in any way that I can. I want others to know that they are not alone in this plight. We have one another to lean on during good times and bad. I truly feel that my fellow Behcet's warriors, whom I have named "The Blue Dragonflies," are my family. If you are a blue dragonfly reading this, know that you have touched my life in a unique and special way, and I thank you for that. Thank you for allowing me to be a part of your journey, and thank you for being a part of mine. We will always spread our wings and fly because we will NOT give up or give into BD. BD will not win.
Thanks for reading. I hope to keep writing more often.
People live their lives and as they go about their days, working, taking care of kids, going on vacation, etc... We live like it is Groundhog Day. In December, it will be 7 years since I have moved back to Illinois (after living in the wonderful, sunny West Coast). SEVEN YEARS! That's seven years of laying in bed every day, doctors appointments, ER visits, hospital admissions, trying new medications and waiting to see if they will work. Trying new medications to counteract the side effects from the first medications. Seven years of depression and anxiety related to living with an illness that will never go away. Seven years of being isolated from normal social activity. Seven years of not working in the career that I spent 10 years getting a doctorate in. Seven years of not being me. Seven years of wishing I were the "old" me. Seven years all culminating to this point, which is finally the beginning of accepting who I am - exactly the way that I am now. While others are out there experiencing what the world has to offer, I am confined to these four walls. I do get out of the house, and way more than I used to. Not because I feel great. I do feel better than I have in years thanks to the combo of meds I am on, but I don't feel well enough to function. I still experience constant pain and fatigue which prevent me from being able to do things that I would love to do. I have the motivation to do them, but not the ability to do them because my health prevents it from being possible. But I push myself to go out and do things. In previous years I would not push myself. I know that was part of the process, a necessary part that I had to experience in order to get to this very juncture.
Yet as I witness (or think about) others out in this big world doing things that I have, and continue to, dream of doing, I find myself saddened. I feel like a small child watching from inside the house, peering out of a window as the older kids play a game I am not permitted to play. Like this game of life is not suited for me. I don't qualify. That is one of the most difficult things to cope with on a daily basis. To think of what I could have done in seven years? I know that's not healthy, the "could-have and should-have" are unhealthy and unproductive constructs that lead us down a path of self destruction and continue pushing us toward a downward spiral of depression and despair. However, it is still my reality. I am not married. I don't have kids. I live with my mother at the age of 36. Where has the time gone?
At the same time, I have devoted many years to being an advocate and helping others with Behcet's Disease. I have found my purpose in life, or at least one of them. And that has been a true gift. A reason to get up in the morning is something that I myself need in order to go on. When I was going through the process of getting diagnosed, I was all alone in Arizona. I say alone because although I had a great group of friends and was in grad school and had built a life that I LOVED, my family was across the country. I was dealing with a potentially life changing diagnosis on my own because I only told a select few people about what was going on. I got judged because I had to call in sick to work or my internship. People thought I was just lazy. Yet I continued to get straight A's, and I got my first choice internship in a highly competitive profession. I fought and I fought. When I finally did receive that diagnosis of BD, and had been living with it for a few years, I wondered will I ever meet another living being who also struggles with this rare disease? When I started meeting others, I vowed to reach out to others so that no one would have to cope with this illness alone. I love helping anyone with BD, but those who are newly diagnosed? I have a special connection to those people.... To get a diagnosis of an incurable illness that will change your life forever and then sent out the door..... as if nothing has happened? That's not right. I strongly believe that doctors who diagnose chronic illnesses should have a therapist/clinical psychologist meet with that individual prior to letting them leave the office. The newly diagnosed individual needs to be able to process what just happened. I wish I could be that person. I wish I could be "on call" for people who are newly diagnosed with BD all over the world. If anyone knows how I can go about doing this, please let me know! I know I can't be there in person, but with Skype and face time etc, it's so easy to have a personal conversation.
I am rambling. But I wanted to highlight a few important points. One, living with a chronic illness is incredibly difficult while friends and family and maybe coworkers are out there living. That doesn't mean others don't have issues. I am merely expressing my own personal process in terms of how challenging it is to not be capable of engaging in myriad desired activities. Secondly, I have enjoyed and feel honored to be able to help others who live with Behcet's Disease daily. I have learned so much about perspective, compassion, kindness, and most importantly, that I actually do know a great deal of information that can, and has, helped so many people. I sometimes think that I don't know all that much. But then I think of where I was when I got diagnosed. I surely didn't know what I know now. Reminding myself that allows me to reach out to others and provide them with information, resources, and support. I have learned a little kindness goes a long way and try to give in any way that I can. I want others to know that they are not alone in this plight. We have one another to lean on during good times and bad. I truly feel that my fellow Behcet's warriors, whom I have named "The Blue Dragonflies," are my family. If you are a blue dragonfly reading this, know that you have touched my life in a unique and special way, and I thank you for that. Thank you for allowing me to be a part of your journey, and thank you for being a part of mine. We will always spread our wings and fly because we will NOT give up or give into BD. BD will not win.
Thanks for reading. I hope to keep writing more often.
Saturday, May 16, 2015
I'm Back....
It's been a while since I have last posted, and I feel terrible about that. This past year time has really just gotten away from me. I guess that could be a good thing.
I do have some good news to report. For the first time ever (knock on wood) I am experiencing a decrease in symptoms. I would not say that I am in a remission, but I am well on my way. More so than I ever have been in the past 8 years. I had not been on any new treatments for Behcet's for about a year when I approached my rheumatologist about a medication I had found while researching on my own. It's called Delzicol, previously known as Asacol. It is an anti-inflammatory medication that is typically utilized to treat Crohn's and Ulcerative Colitis. Some members of my family had taken this for their GI autoimmune diseases. My thought was compared to the other toxins that I had put into my body like the biologics and chemotherapy meds, this couldn't hurt. The side effects are minimal and it is similar to steroids but without the associated side effects. My rheumy said absolutely you can try it. I am not over exaggerating when I state that within two weeks my symptoms began to improve. My oral ulcers generally occur in multiples, are very large in size, and last at least three weeks to a month in duration. I noticed that they were about half the size as they would normally get, I would not get as many, and they did not last as long. I was thrilled! My rheumatologist then added Enbrel. I have been on Enbrel three times prior to this and it has never worked. The combination of the two appear to be helping me a great deal. I am able to get down to 5mg of Prednisone for the first time ever. Although recently I have had to increase to 30mg since then I am unable to get below 10mg without flaring. But I still feel this is all an improvement over my past flares. I used to be hospitalized for flares quite frequently.
I did have a third episode of pancreatitis in December. The first time I got pancreatitis it was from taking Imuran. I promptly stopped taking that medication, however ten months later I got a second episode of pancreatitis that was so bad it nearly killed me. The recurrent episodes caused alarm not only in my mind but my doctors' minds as well. So I met with a well known GI doctor in the area who specializes in the pancreas. He performed a test called an endoscopic ultrasound, similar to a regular endoscopy. He believed that I may have had tiny microscopic stones in my gall bladder that were not visible in the MRI. My results, however, came out normal. There were no stones. I was severely disappointed because I thought that if I got my gall bladder removed that would prevent further episodes of pancreatitis. Let me tell you, having lived with chronic pain for the past 11 years of my life has given me a high tolerance for pain. Yet pancreatitis is the most painful thing I have ever endured.
I have been going to physical therapy for my back and knee pain. I think it is helping, slowly. I know that I am feeling better because in the past I would never have been able to keep all these appointments. I have to go twice per week and normally I would be too tired or wouldn't feel well enough to go. That doesn't mean I am always feeling well, but I am pushing myself.
I have also started a new journey that I am extremely happy about and proud of. Since I am not licensed as a psychologist, it creates limitations as to what I can do work wise. Not only does that create limitations, but the fact that I am ill and would most likely get fired because I would be calling in sick more often than actually going in to work. So I decided to offer life coaching sessions. I feel I have a unique perspective to offer since I have a doctorate in clinical psychology and I live with a chronic illness. I specialize in providing services to other individuals who are suffering from chronic illnesses, but I will work with anyone who wants to make positive changes in their lives. This has helped me a ton because it makes me feel like I have a purpose again. I love helping people and it makes me feel good to know I can make a difference.
I am also starting to become more involved in a church. I feel like I need to follow my instincts and lately I feel like the church community can provide me with something that I may not even be aware of yet but that will fill a void in my life. I have found a few spiritual leaders in my life that have been wonderful at educating me, supporting me, and encouraging me along this process. I just feel it's the right time in my life to do this. I just may get some answers as to why I have BD and what purpose it serves in my life.
It's so difficult trying to live with a chronic illness as it affects every single aspect of your life. I am discussing this and many more issues that Behcet's Disease causes because May is National Behcet's Disease Awareness Month. So on Facebook in my support group, called Behcet's Disease Support: The Blue Dragonflies, I have started what's called The 31 Days of Behcet's. If you suffer from Behcet's and you are not yet involved in the support group, please feel free to send me a request join. It is such an amazing group of people and the connections you will make will be for life. I hope to be more active in the blog again. Thanks, as always, for reading.
I do have some good news to report. For the first time ever (knock on wood) I am experiencing a decrease in symptoms. I would not say that I am in a remission, but I am well on my way. More so than I ever have been in the past 8 years. I had not been on any new treatments for Behcet's for about a year when I approached my rheumatologist about a medication I had found while researching on my own. It's called Delzicol, previously known as Asacol. It is an anti-inflammatory medication that is typically utilized to treat Crohn's and Ulcerative Colitis. Some members of my family had taken this for their GI autoimmune diseases. My thought was compared to the other toxins that I had put into my body like the biologics and chemotherapy meds, this couldn't hurt. The side effects are minimal and it is similar to steroids but without the associated side effects. My rheumy said absolutely you can try it. I am not over exaggerating when I state that within two weeks my symptoms began to improve. My oral ulcers generally occur in multiples, are very large in size, and last at least three weeks to a month in duration. I noticed that they were about half the size as they would normally get, I would not get as many, and they did not last as long. I was thrilled! My rheumatologist then added Enbrel. I have been on Enbrel three times prior to this and it has never worked. The combination of the two appear to be helping me a great deal. I am able to get down to 5mg of Prednisone for the first time ever. Although recently I have had to increase to 30mg since then I am unable to get below 10mg without flaring. But I still feel this is all an improvement over my past flares. I used to be hospitalized for flares quite frequently.
I did have a third episode of pancreatitis in December. The first time I got pancreatitis it was from taking Imuran. I promptly stopped taking that medication, however ten months later I got a second episode of pancreatitis that was so bad it nearly killed me. The recurrent episodes caused alarm not only in my mind but my doctors' minds as well. So I met with a well known GI doctor in the area who specializes in the pancreas. He performed a test called an endoscopic ultrasound, similar to a regular endoscopy. He believed that I may have had tiny microscopic stones in my gall bladder that were not visible in the MRI. My results, however, came out normal. There were no stones. I was severely disappointed because I thought that if I got my gall bladder removed that would prevent further episodes of pancreatitis. Let me tell you, having lived with chronic pain for the past 11 years of my life has given me a high tolerance for pain. Yet pancreatitis is the most painful thing I have ever endured.
I have been going to physical therapy for my back and knee pain. I think it is helping, slowly. I know that I am feeling better because in the past I would never have been able to keep all these appointments. I have to go twice per week and normally I would be too tired or wouldn't feel well enough to go. That doesn't mean I am always feeling well, but I am pushing myself.
I have also started a new journey that I am extremely happy about and proud of. Since I am not licensed as a psychologist, it creates limitations as to what I can do work wise. Not only does that create limitations, but the fact that I am ill and would most likely get fired because I would be calling in sick more often than actually going in to work. So I decided to offer life coaching sessions. I feel I have a unique perspective to offer since I have a doctorate in clinical psychology and I live with a chronic illness. I specialize in providing services to other individuals who are suffering from chronic illnesses, but I will work with anyone who wants to make positive changes in their lives. This has helped me a ton because it makes me feel like I have a purpose again. I love helping people and it makes me feel good to know I can make a difference.
I am also starting to become more involved in a church. I feel like I need to follow my instincts and lately I feel like the church community can provide me with something that I may not even be aware of yet but that will fill a void in my life. I have found a few spiritual leaders in my life that have been wonderful at educating me, supporting me, and encouraging me along this process. I just feel it's the right time in my life to do this. I just may get some answers as to why I have BD and what purpose it serves in my life.
It's so difficult trying to live with a chronic illness as it affects every single aspect of your life. I am discussing this and many more issues that Behcet's Disease causes because May is National Behcet's Disease Awareness Month. So on Facebook in my support group, called Behcet's Disease Support: The Blue Dragonflies, I have started what's called The 31 Days of Behcet's. If you suffer from Behcet's and you are not yet involved in the support group, please feel free to send me a request join. It is such an amazing group of people and the connections you will make will be for life. I hope to be more active in the blog again. Thanks, as always, for reading.
Monday, June 2, 2014
Upcoming Birthday Brings Mixed Feelings
As I prepare for my 35th birthday this upcoming Friday, I find myself having mixed feelings surrounding the date I came out of my mother's womb. I typically enjoy birthdays....I always love any reason to celebrate, especially birthdays! Yet as I approach this birthday I am filled with negative emotions and thoughts about turning the big 3-5. Why you may ask? Well, I am a go getter....Type A personality, like to accomplish things, and especially like to feel like I have a purpose in this life. Since I have been sick so many things have changed. In the beginning I was still able to work and exercise and go out and live my extrodinarily fun and exciting social life. I was a happy go lucky girl who was always smiling. That girl has since hibernated and been replaced by this unrecognizable stranger. Not only have I changed drastically on the outside, but my personality is become increasingly different.
I worked so hard to be able to obtain a doctorate prior to the age of 30. I thought this was a huge accomplishment, something that most people cannot say they have done. But I did it for me and psychology is my passion. However, all of that has been on the back burner for the past 6 years. I have spent my entire 30's in bed for the majority of the time, sick and in pain. I have been hospitalized too many times to count. My life is centered around this disease, no matter how hard I try for it not to be. This IS my reality. I am in the midst of an identity crisis as I search for meaning and purpose in my life. It's not that I feel like I should have accomplished a certain number of things by a certain time....It's just that I feel the past five years I have done nothing. And that's so hard to come to terms with.
I have so many things that I want to do and get out of my life and this disease is preventing me from doing that at this moment. I want to travel the world. I want to get married and be a mother. I want to begin working again as a psychologist. I want to have my own house so that I can have my family over for a holiday. Simple things like that last one that most people take for granted. As I write these words, tears stream down my face, each one symbolizing a lost dream.
I know that I have found a niche in helping others who are also suffering with medical issues. I enjoy helping people find doctors, learn how to advocate for themselves, or simply listen to them as they express how it feels to live every day with constant pain/illness. They find it is easier to talk to me or someone else who is ill because I understand.....I know what they are going through. Most people in their lives are not able to comprehend exactly what it feels like to live with a chronic illness. And that's okay. But everyone needs their feelings validated, and that's what I can provide for them-validation that their feelings are okay and not wrong. I just wish that I was able to get some semblance of normalcy back into my life. I try so hard.
I have been planning to write a book for many many years now and have so many ideas written down. I think that possibly now is the time to really start and take it seriously. My rheumatologist tells me every time I see her that I NEED to hurry up and write my book. She wants me to do so many things to help others and has big plans for me. I just also need to figure out how to do something that will bring in income. I know everything is not about money, but at this point it is a necessity.
Thanks for reading and I apologize for not writing in such a long time! I hope that everyone is doing well. To those of you with Behcet's or another medical problem, may this month bring you health and relief. I will be praying for you.
I worked so hard to be able to obtain a doctorate prior to the age of 30. I thought this was a huge accomplishment, something that most people cannot say they have done. But I did it for me and psychology is my passion. However, all of that has been on the back burner for the past 6 years. I have spent my entire 30's in bed for the majority of the time, sick and in pain. I have been hospitalized too many times to count. My life is centered around this disease, no matter how hard I try for it not to be. This IS my reality. I am in the midst of an identity crisis as I search for meaning and purpose in my life. It's not that I feel like I should have accomplished a certain number of things by a certain time....It's just that I feel the past five years I have done nothing. And that's so hard to come to terms with.
I have so many things that I want to do and get out of my life and this disease is preventing me from doing that at this moment. I want to travel the world. I want to get married and be a mother. I want to begin working again as a psychologist. I want to have my own house so that I can have my family over for a holiday. Simple things like that last one that most people take for granted. As I write these words, tears stream down my face, each one symbolizing a lost dream.
I know that I have found a niche in helping others who are also suffering with medical issues. I enjoy helping people find doctors, learn how to advocate for themselves, or simply listen to them as they express how it feels to live every day with constant pain/illness. They find it is easier to talk to me or someone else who is ill because I understand.....I know what they are going through. Most people in their lives are not able to comprehend exactly what it feels like to live with a chronic illness. And that's okay. But everyone needs their feelings validated, and that's what I can provide for them-validation that their feelings are okay and not wrong. I just wish that I was able to get some semblance of normalcy back into my life. I try so hard.
I have been planning to write a book for many many years now and have so many ideas written down. I think that possibly now is the time to really start and take it seriously. My rheumatologist tells me every time I see her that I NEED to hurry up and write my book. She wants me to do so many things to help others and has big plans for me. I just also need to figure out how to do something that will bring in income. I know everything is not about money, but at this point it is a necessity.
Thanks for reading and I apologize for not writing in such a long time! I hope that everyone is doing well. To those of you with Behcet's or another medical problem, may this month bring you health and relief. I will be praying for you.
Saturday, February 1, 2014
5 year anniversary
This is the 5 year anniversary of being back in Illinois, being pretty much bed ridden due this being the sickest I have ever been, and feeling so unproductive.
In addition to the physical aspects of this disease, the psychological components are equally challenging to cope with. I feel like I so lazy and useless. I went from being at the top of my class and graduating with a doctorate. I joined a private practice for postdoc, and was on my way to a successful career and the life that I had planned out for myself. Then BD reared it's ugly head. And off the beaten path I go. I feel so lost. I don't think I will ever find my way back. But that's probably not what's supposed to happen anyway. I think the whole point is for me to forge a new path, a new journey and to find a new purpose in life. Let me tell you how difficult that has been. I am thankful to have found all the new friends because of this disease. I really want to start my book, which I have been saying for the past three years so I need to get on that. I think that once I start that I will feel like I am actively doing something. I need to do something that I know will ultimately help someone. That's why I got my degree in psychology-to help others. I have been talking to my friend BJ quite a lot (shout out girl!!) and feel so blessed to have connected with her. We laugh so much and it's so healing. We are able to discuss everything from our symptoms (some of which may be awkward at times) to anything else..... it's like once you open that gate and realize the other has BD, there is an instant connection and you feel like you can talk to that person about almost anything!!! She knows what I am going through since she has been bed ridden for a similar amount of time so she feels the same way. It's nice to have her as a sounding board and we are able to motivate each other and push one another toward greatness. We cannot allow one another to give up.
I just can't believe it's been 5 years. I am approaching 35 years old....I need to get my butt in gear and start doing something that will allow me to make a difference. The hardest part of this whole process has been accepting myself for who I am with this disease. It has totally disfigured my body because of the steroids. It has changed my personality.....I no longer recognize myself. I need to do something that will allow me to accept myself and feel whole again. I feel like I am broken into little pieces scattered on the floor. Time to pick myself up again and put the pieces of my life back together.
In addition to the physical aspects of this disease, the psychological components are equally challenging to cope with. I feel like I so lazy and useless. I went from being at the top of my class and graduating with a doctorate. I joined a private practice for postdoc, and was on my way to a successful career and the life that I had planned out for myself. Then BD reared it's ugly head. And off the beaten path I go. I feel so lost. I don't think I will ever find my way back. But that's probably not what's supposed to happen anyway. I think the whole point is for me to forge a new path, a new journey and to find a new purpose in life. Let me tell you how difficult that has been. I am thankful to have found all the new friends because of this disease. I really want to start my book, which I have been saying for the past three years so I need to get on that. I think that once I start that I will feel like I am actively doing something. I need to do something that I know will ultimately help someone. That's why I got my degree in psychology-to help others. I have been talking to my friend BJ quite a lot (shout out girl!!) and feel so blessed to have connected with her. We laugh so much and it's so healing. We are able to discuss everything from our symptoms (some of which may be awkward at times) to anything else..... it's like once you open that gate and realize the other has BD, there is an instant connection and you feel like you can talk to that person about almost anything!!! She knows what I am going through since she has been bed ridden for a similar amount of time so she feels the same way. It's nice to have her as a sounding board and we are able to motivate each other and push one another toward greatness. We cannot allow one another to give up.
I just can't believe it's been 5 years. I am approaching 35 years old....I need to get my butt in gear and start doing something that will allow me to make a difference. The hardest part of this whole process has been accepting myself for who I am with this disease. It has totally disfigured my body because of the steroids. It has changed my personality.....I no longer recognize myself. I need to do something that will allow me to accept myself and feel whole again. I feel like I am broken into little pieces scattered on the floor. Time to pick myself up again and put the pieces of my life back together.
Upcoming Treatment
So this new year brings new, and hopefully successful, treatments. I am starting Lanilomide soon, which is a derivative of Thalidomide. Shortly after that I hope to get a stem cell transplant. I read an article that stated that stem cell transplants are going to be "the treatment" for BD. Let's pray that we can find a way to fund this super expensive treatment. I hope that my rheumy can find grant money to utilize it for research since I have a severe case of refractory behcet's disease. Lucky me!
I had a horrible skin ulcer on the lower quadrant of my left leg...I guess one would call that an ankle.....Lol. I am happy to report that after a long 9 months it has healed!!! It has left a nasty battle wound that looks quite similar to a burn scar, but it is no longer a yucky open wound. Every once in a while it will hurt a bit but I attribute that to nerve pain. I have a few small skin ulcers. I also have really bad throat ulcers and mouth ulcers. My INR has been fluctuating like crazy so I have been unable to get my oral surgery. Therefore, we have had to adjust my Coumadin doses every couple of weeks. I have been suffering from terrible fatigue. I can barely walk for a few minutes without feeling the exhaustion. It's so hard because I used to be so active. I feel lazy, but then remind myself that it's the disease and not me. Still hard to come to terms with.
I hope this year will be a great year for myself and my fellow BD friends!!!!!!
I had a horrible skin ulcer on the lower quadrant of my left leg...I guess one would call that an ankle.....Lol. I am happy to report that after a long 9 months it has healed!!! It has left a nasty battle wound that looks quite similar to a burn scar, but it is no longer a yucky open wound. Every once in a while it will hurt a bit but I attribute that to nerve pain. I have a few small skin ulcers. I also have really bad throat ulcers and mouth ulcers. My INR has been fluctuating like crazy so I have been unable to get my oral surgery. Therefore, we have had to adjust my Coumadin doses every couple of weeks. I have been suffering from terrible fatigue. I can barely walk for a few minutes without feeling the exhaustion. It's so hard because I used to be so active. I feel lazy, but then remind myself that it's the disease and not me. Still hard to come to terms with.
I hope this year will be a great year for myself and my fellow BD friends!!!!!!
Dedicated to Kristi Dalby, my dear Behcet's friend and sister....
I cannot believe that it's been so long since I've written. I guess I have been in a slump....kinda down in the dumps lately. This disease just drags you down like a weight attached to your limbs. Every day it gets heavier and heavier. Eventually you find that you cannot even lift anything anymore so why bother.
But fight on we must.
My dear friend, Kristi Dalby, has been in the hospital and is very ill. She also has Behcet's Disease. She is very immunosuppressed, is septic, has various infections, may have encephalitis, etc etc etc. She is so sick. She said numerous times she feels as though she is dying. She's not one to throw that phrase around lightly. She is such a strong and tough woman who has been fighting for a long time. I actually have this blog to thank for bringing us together. She accessed my blog and sent me an email and we became instant friends, contacting each other daily ever since. That was over a year ago. The thing about chronic illness is it is so difficult for those who are healthy to truly grasp what it is like to be sick every day. So to have friends who know EXACTLY what you are going through is such a blessing. I am lucky to be a part of a Women with Behcet's Group on Facebook. It's such an amazing group of women who all share similar experiences with this terrible debilitating disease. When one of us hurts, we all hurt. So for Kristi to be in the hospital so sick, hurting so much right now....I feel helpless. It's interesting. I guess I feel how my family and friends feel in my life when they see me in pain and are unable to do anything to help me get better. But all you can do is provide support, pray, and love that person. And do anything they need. I have been thinking about her constantly, wondering what she is feeling right this moment. Wondering if she is okay. I have faith that she will beat this because I feel that there is enough strength between those of us who know and care for her...that this strength will lift her up and these prayers will reach God in such astounding numbers that He will have NO CHOICE but to help heal her. Her family needs her, her kids need her. We all need her.
It scares all of us to have someone we know get this ill, because we know this could be any one of us at any time. It's truly terrifying. I can't spend time thinking about it though. I just have to remain positive and talk to loved ones and seek social support. Does this mean I remain happy all the time? No way. I find that I withdrawal....I get depressed and cry and wonder when will this suffering end? But I will not give up this fight. I can't. There are too many people out there who are fighting and need inspiration. Every time you read someone's story about overcoming seemingly insurmountable obstacles it inspires me. I hope to inspire others in a similar manner. It's kind of like a pay it forward inspiration style! :) Please keep Kristi in your prayers. She means so much to me.
Thanks for reading! Hope you are all having a good start to 2014!
PS. You can read Kristi's story on the post published on 2/28/13.
But fight on we must.
My dear friend, Kristi Dalby, has been in the hospital and is very ill. She also has Behcet's Disease. She is very immunosuppressed, is septic, has various infections, may have encephalitis, etc etc etc. She is so sick. She said numerous times she feels as though she is dying. She's not one to throw that phrase around lightly. She is such a strong and tough woman who has been fighting for a long time. I actually have this blog to thank for bringing us together. She accessed my blog and sent me an email and we became instant friends, contacting each other daily ever since. That was over a year ago. The thing about chronic illness is it is so difficult for those who are healthy to truly grasp what it is like to be sick every day. So to have friends who know EXACTLY what you are going through is such a blessing. I am lucky to be a part of a Women with Behcet's Group on Facebook. It's such an amazing group of women who all share similar experiences with this terrible debilitating disease. When one of us hurts, we all hurt. So for Kristi to be in the hospital so sick, hurting so much right now....I feel helpless. It's interesting. I guess I feel how my family and friends feel in my life when they see me in pain and are unable to do anything to help me get better. But all you can do is provide support, pray, and love that person. And do anything they need. I have been thinking about her constantly, wondering what she is feeling right this moment. Wondering if she is okay. I have faith that she will beat this because I feel that there is enough strength between those of us who know and care for her...that this strength will lift her up and these prayers will reach God in such astounding numbers that He will have NO CHOICE but to help heal her. Her family needs her, her kids need her. We all need her.
It scares all of us to have someone we know get this ill, because we know this could be any one of us at any time. It's truly terrifying. I can't spend time thinking about it though. I just have to remain positive and talk to loved ones and seek social support. Does this mean I remain happy all the time? No way. I find that I withdrawal....I get depressed and cry and wonder when will this suffering end? But I will not give up this fight. I can't. There are too many people out there who are fighting and need inspiration. Every time you read someone's story about overcoming seemingly insurmountable obstacles it inspires me. I hope to inspire others in a similar manner. It's kind of like a pay it forward inspiration style! :) Please keep Kristi in your prayers. She means so much to me.
Thanks for reading! Hope you are all having a good start to 2014!
PS. You can read Kristi's story on the post published on 2/28/13.
Monday, September 2, 2013
Exciting things for the future
I am thrilled to announce a few things that I am currently working on. First, I know that you may have noticed I have shared a couple stories of other people who also suffer from BD. I think that it is so important to share these stories for a variety of reasons. Everyone deserves to have their story heard and to have a voice. Also, as you all know, not every case of BD is the same. So just because I have certain symptoms and issues does not mean that you can fully relate. Other people may have more similar issues and therefore it may give you ideas about potential treatments, coping techniques, etc. I think it's so important for all of us to reach out to one another and to make as many connections as we can, so this can help with that. So I am in the process of getting stories from some individuals whose stories I believe are super inspiring. I look forward to sharing them with you, and I hope you are excited to read them as well!
I am also FINALLY starting my book. I have wanted to write a book about my life with Behcet's Disease. I have put it off for a while but it is time to start the ball rolling. In addition, I am wanting to get into motivational speaking and have made some contacts that may facilitate this process. I am so happy about these upcoming projects! I may be seeking your advice about what kinds of things you want to hear about in the book...... So look out for those posts!
I am also FINALLY starting my book. I have wanted to write a book about my life with Behcet's Disease. I have put it off for a while but it is time to start the ball rolling. In addition, I am wanting to get into motivational speaking and have made some contacts that may facilitate this process. I am so happy about these upcoming projects! I may be seeking your advice about what kinds of things you want to hear about in the book...... So look out for those posts!
Cadaver skin ..... and more
I have been really impressed with how my cadaver skin is taking. I did not know what to expect from this procedure. To be totally honest, I did expect to be completely grossed out. I am not at all grossed out by the look of it. I would share a picture, but I don't want those who are uncomfortable seeing it to have to look at it. If you are interested in seeing what it looks like, please email me and I will send you a picture. You can email me at mandifessler@gmail.com.
I return to the wound care specialist tomorrow for another follow up visit. I have not been there since last Tuesday. Initially they wanted me to come twice a week so they could monitor it and change the wrap/bandages. But since they checked it last Tuesday and there was very little drainage, they decided that I could go an entire week before coming back. They were so pleased with how it looked. I cannot recall whether or not I have posted how well the skin was taking....If I have already updated, please forgive me.
Dr. Ennis, my amazing wound care doc in Chicago, was incredibly pleased by how fast the skin was taking. There are two spots where my skin has already begun growing through. Since I was on high dose steroids, I was a perfect candidate because being immunosuppressed will allow my body to refrain from rejecting the skin. Instead, it will accept it as my own and speed up the healing process. It's so interesting how this all works. I had to decrease my steroids, but I am also now back on Cellcept so that is still an immunosuppressive medication.
Speaking of steroids....I was gaining SO much weight that my doctor took one look at me and was completely shocked by how much weight I had gained in such a short period of time. I have gone from 200 to 238 in the past few months. My face and chin are SO incredibly swollen. It is difficult to breathe because of how bloated and swollen my stomach is. A typical taper includes decreasing my dose by 2.5mg every two weeks. But my rheumy, Dr. Sweiss, told me to go from 40 to 30mg for two days....and then from 30 to 20mg. I have remained on that dose for the past week and have increased my cellcept to two pills (1000mg) a day. I have noticed a difference in the decrease in steroids for many reasons, some good and some bad. I think I have lost weight and I can breathe again.... I am not as hungry as I was. But I feel totally terrible. Whenever I decrease my dose I feel so horrible, like I have the flu, everything aches, feel like I have a fever, etc. I hope to be off Prednisone in the next few months for good. I have to get off of it and STAY off of it. I need to find an alternative to this horrible medication. The weight gain has been so terrible. I have gained a total of 113 lbs. I cannot believe it. I know appearances are not everything, but I don't even recognize myself when I look in the mirror. I feel disgusting. I want my body back. It's bad enough that I have to be in such pain and fatigue all the time. To also have to cope with body image issues on top of everything else just exacerbates this vicious cycle of declining psychological and physical health. I have had people tell me that it's stupid to worry about this and that I am being "pretentious." I just want to look like me again. I am not wanting to look like some supermodel nor am I wanting to look like some perfect person. I just want MY body back. It's all part of wanting some semblance of normalcy.
I could go on and on about that topic, but I can discuss that at a later date. Thanks for reading, as always. I hope you are all feeling well, and praying for your remission!
I return to the wound care specialist tomorrow for another follow up visit. I have not been there since last Tuesday. Initially they wanted me to come twice a week so they could monitor it and change the wrap/bandages. But since they checked it last Tuesday and there was very little drainage, they decided that I could go an entire week before coming back. They were so pleased with how it looked. I cannot recall whether or not I have posted how well the skin was taking....If I have already updated, please forgive me.
Dr. Ennis, my amazing wound care doc in Chicago, was incredibly pleased by how fast the skin was taking. There are two spots where my skin has already begun growing through. Since I was on high dose steroids, I was a perfect candidate because being immunosuppressed will allow my body to refrain from rejecting the skin. Instead, it will accept it as my own and speed up the healing process. It's so interesting how this all works. I had to decrease my steroids, but I am also now back on Cellcept so that is still an immunosuppressive medication.
Speaking of steroids....I was gaining SO much weight that my doctor took one look at me and was completely shocked by how much weight I had gained in such a short period of time. I have gone from 200 to 238 in the past few months. My face and chin are SO incredibly swollen. It is difficult to breathe because of how bloated and swollen my stomach is. A typical taper includes decreasing my dose by 2.5mg every two weeks. But my rheumy, Dr. Sweiss, told me to go from 40 to 30mg for two days....and then from 30 to 20mg. I have remained on that dose for the past week and have increased my cellcept to two pills (1000mg) a day. I have noticed a difference in the decrease in steroids for many reasons, some good and some bad. I think I have lost weight and I can breathe again.... I am not as hungry as I was. But I feel totally terrible. Whenever I decrease my dose I feel so horrible, like I have the flu, everything aches, feel like I have a fever, etc. I hope to be off Prednisone in the next few months for good. I have to get off of it and STAY off of it. I need to find an alternative to this horrible medication. The weight gain has been so terrible. I have gained a total of 113 lbs. I cannot believe it. I know appearances are not everything, but I don't even recognize myself when I look in the mirror. I feel disgusting. I want my body back. It's bad enough that I have to be in such pain and fatigue all the time. To also have to cope with body image issues on top of everything else just exacerbates this vicious cycle of declining psychological and physical health. I have had people tell me that it's stupid to worry about this and that I am being "pretentious." I just want to look like me again. I am not wanting to look like some supermodel nor am I wanting to look like some perfect person. I just want MY body back. It's all part of wanting some semblance of normalcy.
I could go on and on about that topic, but I can discuss that at a later date. Thanks for reading, as always. I hope you are all feeling well, and praying for your remission!
Thursday, August 22, 2013
Wound care treatment
I have been having horrible ulcers on my skin. Way more than what is typical for me. I had about 35 between both arms, and then about 5 or 6 huge ones on my legs. My left leg in particular has a sore that takes up my entire bottom portion of my calf. I have never seen anything like it, and neither has my doctors and others suffering with BD. I have been seeing a well known wound care specialist at UIC for the past two months. He has given me multiple different medications and wraps to promote healing and prevent infection. So far, it has been helping immensely. Also, they performed a technique called a debridement. This is where they numb up the area and use a scalpel to scrape off any dead tissue/skin that may be preventing it from healing. It wasn't bad. Tomorrow they are going to take cadaver skin and place it on the area using steri strips. It's similar to a skin graft but it's not a surgical procedure. Since I am on high dose steroids and am therefore immunosuppressed, the hope is that my body will not reject this skin as foreign and will accept it as my own and use it to promote healing and reduce scarring. I am afraid, not for the pain because I don't think it will hurt. But instead it really, really grosses me out. I am very thankful for whomever decided they wanted to become an organ donor because this allows me to even get this procedure. But the thought of it makes me sick. I hope that I am able to stomach it.
I will update as things progress. Next week I also have two appointments, one with my rheumatologist and pain management doctor. And then I have oral surgery on Wednesday. I really want to get that over with. It's not going to be fun healing from that while having horrible mouth ulcers. Oh well, such is life with BD.
I have to say that I am so excited that I have found various "secret" groups on facebook that have members who are all suffering from Behcet's. I don't know why it took me this long to find it, but I am just lucky that I finally have. I have been connecting with SO many people who understand exactly what living with this disease is like. There are so many people with similar situations and it is nice to know I am not alone. I am creating some really great friendships throughout this process. Although this is not the means I wish us to connect, I feel blessed to have found the people I have. I hope to continue to meet others so that we can support one another and fight this lifelong battle. We will NOT let BD win.
I will update as things progress. Next week I also have two appointments, one with my rheumatologist and pain management doctor. And then I have oral surgery on Wednesday. I really want to get that over with. It's not going to be fun healing from that while having horrible mouth ulcers. Oh well, such is life with BD.
I have to say that I am so excited that I have found various "secret" groups on facebook that have members who are all suffering from Behcet's. I don't know why it took me this long to find it, but I am just lucky that I finally have. I have been connecting with SO many people who understand exactly what living with this disease is like. There are so many people with similar situations and it is nice to know I am not alone. I am creating some really great friendships throughout this process. Although this is not the means I wish us to connect, I feel blessed to have found the people I have. I hope to continue to meet others so that we can support one another and fight this lifelong battle. We will NOT let BD win.
Friday, August 2, 2013
Behcet's, Behcet's, Behcet's
I cannot believe we are already more than halfway through the year 2013. I really thought this year would bring good things in in terms of remission and relief from my various medical problems. This has yet to be seen. I have literally been in the hospital about 12 times since January. I have not had one day without experiencing symptoms. I was taking Enbrel and Cellcept but it did not appear to be working. However, once I stopped (probably about a month or two ago) I started to get the WORST flare up to date. I had so many mouth ulcers that covered my tongue, roof of my mouth, and all down my throat. Additionally, I got the most skin ulcers I have ever had. I think I have about 30 on my arms alone. I have one huge ulcer on my left lower calf that is actually three ulcers right next to each other. Combine they are the size of a baseball or a little larger. I went to a wound specialist and have been there three times. I just went today and they performed a procedure called a debridment where they numb the area and scrape off dead tissue with a scalpel to promote healing of the wound. For the past three weeks I have had to change the dressing daily. I apply pain medication cream, then this dressing that is made out of seaweed called calcium alginate. I top that with a non stick gauze covered with vasaline (which I decided to do on my own, and it ended up helping immensely). I wrap my leg with a gauze wrap and then an ace bandage. It has been so hard to have my leg wrapped up during this heat. But the wound is healing much faster than I anticipated, so no complaints.
I also have about 6 other large sores on my legs the size of quarters. During the first three weeks these ulcers hurt so incredibly bad. They burned and stung to the point that I was in tears. I had increased my steroid dose to 60mg, and am now down to 40mg. The side effects are horrendous. The weight gain, sweating, anxiety, heart palpitations, mood swings, anger, etc. I even continue to get new mouth and skin sores despite the high dose steroids. I have been on antibiotics for two weeks.
I was supposed to get oral surgery in early February because I need two teeth extracted as a result of decay from the Actiq medication. I have been unable to have the surgery because I have been so ill ever since. I literally have not gone one day without horrible mouth ulcers. This past Sunday I started getting intense pain in one of the teeth that needs extraction. My entire jaw, ear, and head was throbbing. I noticed that more of the tooth had chipped off....It's the very last tooth on the lower left. The root is undoubtedly exposed. I went to the oral surgeon a few days ago and scheduled surgery for August 28th. He told me that it could kill me should the tooth get infected, which I was already aware of. But it's so hard because there is so much going on with my disease that there is like a domino affect. One problem causes another which leads to another and so on. It is so frustrating that I can't get a break from anything. I will start feeling a little better to the point where I get excited, and then every time something else happens. I am trying so hard to stay positive. I know this is a test of my strength and character so I remind myself that I need to hold onto the optimism and hope, even if it is small. I refuse to give up and let this disease beat me. I often receive comments from people stating that they are so impressed that I am positive and have a good attitude and they ask me how I do it. I honestly don't know how I do it. I just know that life is short and despite the fact that things royally suck for me most days, this is my life and it's the only one I will get. I do have a choice. I can choose to stay positive and happy and make the best out of every situation. Or, I can choose to be pessimistic, giving into the dark depression and isolation that accompany diseases like this. Don't get me wrong, this does not mean that I am happy every single day. I have days where I cry, am sad, have a pity party, wonder why this has to happen to me, etc. I yell and scream and get frustrated. But these emotions are fleeting and temporary. I remind myself that things could be worse and I am lucky to be alive. But I miss working terribly. Being a Child Psychologist was my life dream and passion. I want to be able to work again, even if it is just part time.
I have met some wonderful people that have contacted me through this blog. It has been so nice to have people to talk to who have firsthand knowledge of what it is like to live with Behcet's Disease. Having that kind of support has helped me greatly. Words cannot express how blessed I am to have those people in my life now. It is difficult because I really don't have much social support. I don't have people coming to visit, bringing me meals, etc. I do have some wonderful friends but the majority of them live out of state but I love that I can talk to them on the phone. I know it can be difficult for others to hear what I am going through, but I am thankful to have people to talk to. I just wish some people in my life would become a little more supportive and offer to do things to help. Living with a chronic illness, especially one that is extremely rare, is an incredibly isolating journey. I have learned so much about myself and how strong I truly am. It is my goal to help others....whether it be people who are suffering from Behcet's, other medical problems, mental health problems, or just life challenges in general. I have always felt that my place in the world is cemented in the role of assisting others. I hope that I am able to help others by sharing my story. I am going to begin writing a book that I hope to get published. As always, thanks for reading. And please comment or contact me if you have any questions or need anything. Take good care!!!
I also have about 6 other large sores on my legs the size of quarters. During the first three weeks these ulcers hurt so incredibly bad. They burned and stung to the point that I was in tears. I had increased my steroid dose to 60mg, and am now down to 40mg. The side effects are horrendous. The weight gain, sweating, anxiety, heart palpitations, mood swings, anger, etc. I even continue to get new mouth and skin sores despite the high dose steroids. I have been on antibiotics for two weeks.
I was supposed to get oral surgery in early February because I need two teeth extracted as a result of decay from the Actiq medication. I have been unable to have the surgery because I have been so ill ever since. I literally have not gone one day without horrible mouth ulcers. This past Sunday I started getting intense pain in one of the teeth that needs extraction. My entire jaw, ear, and head was throbbing. I noticed that more of the tooth had chipped off....It's the very last tooth on the lower left. The root is undoubtedly exposed. I went to the oral surgeon a few days ago and scheduled surgery for August 28th. He told me that it could kill me should the tooth get infected, which I was already aware of. But it's so hard because there is so much going on with my disease that there is like a domino affect. One problem causes another which leads to another and so on. It is so frustrating that I can't get a break from anything. I will start feeling a little better to the point where I get excited, and then every time something else happens. I am trying so hard to stay positive. I know this is a test of my strength and character so I remind myself that I need to hold onto the optimism and hope, even if it is small. I refuse to give up and let this disease beat me. I often receive comments from people stating that they are so impressed that I am positive and have a good attitude and they ask me how I do it. I honestly don't know how I do it. I just know that life is short and despite the fact that things royally suck for me most days, this is my life and it's the only one I will get. I do have a choice. I can choose to stay positive and happy and make the best out of every situation. Or, I can choose to be pessimistic, giving into the dark depression and isolation that accompany diseases like this. Don't get me wrong, this does not mean that I am happy every single day. I have days where I cry, am sad, have a pity party, wonder why this has to happen to me, etc. I yell and scream and get frustrated. But these emotions are fleeting and temporary. I remind myself that things could be worse and I am lucky to be alive. But I miss working terribly. Being a Child Psychologist was my life dream and passion. I want to be able to work again, even if it is just part time.
I have met some wonderful people that have contacted me through this blog. It has been so nice to have people to talk to who have firsthand knowledge of what it is like to live with Behcet's Disease. Having that kind of support has helped me greatly. Words cannot express how blessed I am to have those people in my life now. It is difficult because I really don't have much social support. I don't have people coming to visit, bringing me meals, etc. I do have some wonderful friends but the majority of them live out of state but I love that I can talk to them on the phone. I know it can be difficult for others to hear what I am going through, but I am thankful to have people to talk to. I just wish some people in my life would become a little more supportive and offer to do things to help. Living with a chronic illness, especially one that is extremely rare, is an incredibly isolating journey. I have learned so much about myself and how strong I truly am. It is my goal to help others....whether it be people who are suffering from Behcet's, other medical problems, mental health problems, or just life challenges in general. I have always felt that my place in the world is cemented in the role of assisting others. I hope that I am able to help others by sharing my story. I am going to begin writing a book that I hope to get published. As always, thanks for reading. And please comment or contact me if you have any questions or need anything. Take good care!!!
I'm Back....
I apologize sincerely for my absence for the past few months. So much has been going on and it has been difficult to carve out some time to sit down and really concentrate on writing a post.
First off, I had to put my kitty Chase to sleep. He was very sick and was hospitalized around the time of my birthday in early June. After a week in the hospital he was sent home with a feeding tube. He had gall stones and was unable to eat due to severe nausea. He responded well to the treatments. A few weeks later he was sick again. They gave him prednisone, antibiotics, anti nausea meds, etc. Again, he responded very well to the meds. He was better within a few hours, Approximately a month later, which brings us to mid July, he suddenly started vomiting violently, was unable to walk due to pain, and was extremely lethargic. I just knew that this was it. Prior to taking him to the vet I told Bella (my dog and Chase's best friend) that Chase would most likely not be returning home. I remember laying next to him on the floor petting him and just crying, telling him it's okay to stop fighting. I knew he was suffering and it was just a matter of time before he was sick again. Each treatment was just a band aid. Sure enough, when I took him to the vet they told me that they could give him more meds but that since he was in excruciating pain it was probably evident that his gall bladder was about to rupture. The vet was confident that the end was near and she would not have been surprised if we were back within 12 hours. So I made the difficult decision to end his suffering. It was the hardest thing I have EVER had to do. My mom and I stayed in the room while they administered the medication to put him to sleep, not entirely, but the ketamine which is just like anesthesia. I could not handle being present while they pronounced time of death. He was on a lot of pain meds so he was very out of it. I just held him and told him how much I loved him, how wonderful he was, how much joy he had brought me in my life. He was there during the most difficult times of my life....When I started getting ill with Behcet's, moving from Arizona to California for internship, and then back to Arizona again. And then the move from Arizona to Illinois to live with my mom. He developed a strong connection with my Mom over time. It is so hard to think about him. Bella was immediately depressed and could sense something was different. She wasn't eating the days following, wouldn't bask in the sun, wouldn't do much of anything. I would find her searching the house for him. I knew I wanted to get another kitty but didn't anticipate getting one soon. However, I saw this kitty at PetSmart through Purrs Naperville. She was 10 weeks at the time, she is a tabby/tortie, and the best part....she's polydactyl, meaning she has extra fingers. She has thumbs on both of her front paws. She is absolutely beautiful. Her and Bella instantly hit it off, she started giving me kisses right away. It just felt like it was meant to be. I brought her home and she immediately fit right in. It feels like she has been here forever, it's only been three weeks. She is very crazy, hyper, clumsy, happy, and just brings a new energy in the house. Bella is no longer depressed and neither am I.
It's funny. As much as I miss Chase, and I always will, I have to admit I was a little shocked at the way I reacted to the whole situation. Since he was sick and there was no cure for his illness, I was constantly worried and stressed wondering when the time would come that he would no longer be able to go on. After I walked out of the vet that day, although I was balling my eyes out, I felt a huge weight lifted off my shoulders. It was a relief to know he was no longer suffering and that I did not have to stress about it. I was very depressed and in mourning that weekend. I got Khloie, the new kitty, on Sunday. Some people disagreed with my decision to get a new kitty so quickly. Everyone experiences things differently. This just felt right for me. I have so much love to give and since I am home alone all day it helps to have the animals around. Plus it takes my mind off my illness. It was like I had hope all over again. I started sleeping at night and not all day. I became more active, doing things around the house and just overall in a better mood. My mom even noticed stating that I had my fight back. I without a doubt believe I made the correct decision.
Animals have an amazing ability to help people throughout various life challenges, specifically medical or mental health issues. Their unconditional love and support is extremely therapeutic. I strongly encourage people to adopt a pet if they are struggling with any type of illness. The memories and the experiences that they provide are priceless.
First off, I had to put my kitty Chase to sleep. He was very sick and was hospitalized around the time of my birthday in early June. After a week in the hospital he was sent home with a feeding tube. He had gall stones and was unable to eat due to severe nausea. He responded well to the treatments. A few weeks later he was sick again. They gave him prednisone, antibiotics, anti nausea meds, etc. Again, he responded very well to the meds. He was better within a few hours, Approximately a month later, which brings us to mid July, he suddenly started vomiting violently, was unable to walk due to pain, and was extremely lethargic. I just knew that this was it. Prior to taking him to the vet I told Bella (my dog and Chase's best friend) that Chase would most likely not be returning home. I remember laying next to him on the floor petting him and just crying, telling him it's okay to stop fighting. I knew he was suffering and it was just a matter of time before he was sick again. Each treatment was just a band aid. Sure enough, when I took him to the vet they told me that they could give him more meds but that since he was in excruciating pain it was probably evident that his gall bladder was about to rupture. The vet was confident that the end was near and she would not have been surprised if we were back within 12 hours. So I made the difficult decision to end his suffering. It was the hardest thing I have EVER had to do. My mom and I stayed in the room while they administered the medication to put him to sleep, not entirely, but the ketamine which is just like anesthesia. I could not handle being present while they pronounced time of death. He was on a lot of pain meds so he was very out of it. I just held him and told him how much I loved him, how wonderful he was, how much joy he had brought me in my life. He was there during the most difficult times of my life....When I started getting ill with Behcet's, moving from Arizona to California for internship, and then back to Arizona again. And then the move from Arizona to Illinois to live with my mom. He developed a strong connection with my Mom over time. It is so hard to think about him. Bella was immediately depressed and could sense something was different. She wasn't eating the days following, wouldn't bask in the sun, wouldn't do much of anything. I would find her searching the house for him. I knew I wanted to get another kitty but didn't anticipate getting one soon. However, I saw this kitty at PetSmart through Purrs Naperville. She was 10 weeks at the time, she is a tabby/tortie, and the best part....she's polydactyl, meaning she has extra fingers. She has thumbs on both of her front paws. She is absolutely beautiful. Her and Bella instantly hit it off, she started giving me kisses right away. It just felt like it was meant to be. I brought her home and she immediately fit right in. It feels like she has been here forever, it's only been three weeks. She is very crazy, hyper, clumsy, happy, and just brings a new energy in the house. Bella is no longer depressed and neither am I.
It's funny. As much as I miss Chase, and I always will, I have to admit I was a little shocked at the way I reacted to the whole situation. Since he was sick and there was no cure for his illness, I was constantly worried and stressed wondering when the time would come that he would no longer be able to go on. After I walked out of the vet that day, although I was balling my eyes out, I felt a huge weight lifted off my shoulders. It was a relief to know he was no longer suffering and that I did not have to stress about it. I was very depressed and in mourning that weekend. I got Khloie, the new kitty, on Sunday. Some people disagreed with my decision to get a new kitty so quickly. Everyone experiences things differently. This just felt right for me. I have so much love to give and since I am home alone all day it helps to have the animals around. Plus it takes my mind off my illness. It was like I had hope all over again. I started sleeping at night and not all day. I became more active, doing things around the house and just overall in a better mood. My mom even noticed stating that I had my fight back. I without a doubt believe I made the correct decision.
Animals have an amazing ability to help people throughout various life challenges, specifically medical or mental health issues. Their unconditional love and support is extremely therapeutic. I strongly encourage people to adopt a pet if they are struggling with any type of illness. The memories and the experiences that they provide are priceless.
Thursday, April 25, 2013
Support Groups, Anyone?
So I have been living back in Illinois for a little over four years, and I have looked for support groups the entire time. I have found a few through Meet-up online, and those did not meet my expectations. They are started by random people and I didn't have a good experience. I want to attend a formal support group led by a qualified professional..... Is that too much to ask?
Since receiving my diagnosis, I have found that there is a lack of cohesion between the medical field and psychology. In otherwords, although people place emphasis on the importance of the mind-body connection in theory, the practical applications of this have not yet impressed me. Having a doctorate in psychology and also being an individual suffering from a chronic illness provides me, I think, with a unique perspective. I know what patients need psychologically in coping with illnesses because I am living it every day. It leaves me in awe because I think that the field of psychology has so much to offer patients with medical problems. For example, when someone is diagnosed with any medical condition, I think there should be a mental health professional available to assist that person in processing the diagnosis. It can be very scary and unsettling to receive a diagnosis and then be sent out into the world to deal with it. Sometimes people have family members or friends with them, and that helps a ton. But when I was going through the long and trying process of receiving a diagnosis I was living in Arizona away from my family. I was trying to deal with the stressors of graduate school. I attended my doctors appointments alone. I left the appointments alone, my mind swirling with unanswered questions and fears and frustrations. I called my mom and sisters after each appointment, and it was so difficult to be away from them. I did have select friends that I chose to tell about my medical problems. But I didn't tell many people. I didn't want to be perceived as weak or get pity.
Edward Hospital, the hospital I frequently visit more than my local Starbucks, offers numerous support groups for cancer patients, but I haven't found many support groups for other medical issues. I am going to call one of the social workers associated with the hospital to determine whether or not I can attend any of the support groups. Edward Hospital has a very nice outpatient cancer center and I went there a couple of weeks ago to get an IV infusion of steroid medication. The center offers a variety of opportunities for patients to attend with the aim of reducing stress. For instance, there are yoga classes, healing sound meditation sessions, creative writing seminars, etc. These are all for cancer patients. What about the rest of us? The prevalence of autoimmune diseases is extremely high and there should be similar opportunities offered. There seems to be a gap in the services provided for individuals with medical problems unless it is cancer. I am not in any way or form stating that cancer patients should not receive these services. I am statint the opposite. They are wonderful experiences that I think should be expanded and provided for individuals with other chronic medical problems as well.
This leads me to wonder something.....I strongly believe that everything happens for a reason. I have this illness for a reason. Perhaps one of the reasons is that I am meant to work in the field of medical psychology. Although my past experiences have led me to believe my work should be strictly with children, the world may be telling me that I am meant to recognize the fact that increased psychological services could benefit individuals in a medical/hospital setting and to do something about it. I told my mom the other day that I wish I could work at a hospital and go around to visit patients and just talk with them. Just like I enjoy receiving visits from the therapy dogs, I would love to just have someone come and talk to me. The nurses and tech's do this when they can but they are often so busy with their work that they don't have much time for it. I think it would be so beneficial to offer patients a therapist who would come and check in with them daily while they are in the hospital. Especially for those who are hospitalized frequently, like me. It can be so lonely and stressful.
Another thing that bothers me is this....There are so many treatment centers (inpatient and outpatient) for individuals who need treatment for substance abuse problems. Why can't there be places similar to those for individuals who suffer from autoimmune diseases or other health conditions? Places where we can go and receive treatment for our medical problems that also incorporate other services like mental health treatment, yoga, exercising classes, etc. These centers are often located in California or other places near beaches, mountains, places that are beautiful and therapeutic in nature. I guess I wish I could go to a treatment center in California near the beach where I could enjoy the healing qualities of the ocean and the sun while receiving treatment for my disease. I could meet others who are going through what I am going through, and we can support one another. Those bonds can be so strong and can provide the foundation for lifelong friendships. I know that I have met two women in particular from writing this blog that have been so important to me. They have been there for me and it has been so wonderful to have two women who know exactly what I am going through. I have met many other wonderful people who have contacted me through the blog as well and I hope to get to know them more. I was hesitant about writing this blog in the beginning. I thought, "who will even read this?" I am pleasantly surprised at how many wonderful people I have met because of it. I never imagined that anyone would read it, or that anyone would be able to relate. I can honestly say that it has changed my life. Writing for me is incredibly cathartic and therapeutic. Writing about these experiences allows me to express what I am going through to the world. When other people write to me saying that what I said validated their experiences, well there is nothing better than that. I know I searched all over for people who were going through the same thing when I was first diagnosed. So I hope that individuals who are just diagnosed with Behcet's can find this helpful. I wish for it to be helpful for anyone, really, but especially those with Behcet's. Since the disease is so rare it can be that much more isolating and the need to seek others who can relate is huge.
If anyone knows of any support groups in Naperville or surrounding areas, please let me know! If anyone has attended any support groups (chronic pain or other groups) anywhere and is willing to share their experiences, please do so! I would love to hear if these groups helped and how they helped. I hope everyone is doing well. To those who may be struggling, hang in there and stay POSITIVE. I try every single day to combat those pesky negative thoughts with positive ones. It is a constant struggle. But keep with it, because the mind is a very powerful tool we can use to cope with the many obstacles we are faced with.
Since receiving my diagnosis, I have found that there is a lack of cohesion between the medical field and psychology. In otherwords, although people place emphasis on the importance of the mind-body connection in theory, the practical applications of this have not yet impressed me. Having a doctorate in psychology and also being an individual suffering from a chronic illness provides me, I think, with a unique perspective. I know what patients need psychologically in coping with illnesses because I am living it every day. It leaves me in awe because I think that the field of psychology has so much to offer patients with medical problems. For example, when someone is diagnosed with any medical condition, I think there should be a mental health professional available to assist that person in processing the diagnosis. It can be very scary and unsettling to receive a diagnosis and then be sent out into the world to deal with it. Sometimes people have family members or friends with them, and that helps a ton. But when I was going through the long and trying process of receiving a diagnosis I was living in Arizona away from my family. I was trying to deal with the stressors of graduate school. I attended my doctors appointments alone. I left the appointments alone, my mind swirling with unanswered questions and fears and frustrations. I called my mom and sisters after each appointment, and it was so difficult to be away from them. I did have select friends that I chose to tell about my medical problems. But I didn't tell many people. I didn't want to be perceived as weak or get pity.
Edward Hospital, the hospital I frequently visit more than my local Starbucks, offers numerous support groups for cancer patients, but I haven't found many support groups for other medical issues. I am going to call one of the social workers associated with the hospital to determine whether or not I can attend any of the support groups. Edward Hospital has a very nice outpatient cancer center and I went there a couple of weeks ago to get an IV infusion of steroid medication. The center offers a variety of opportunities for patients to attend with the aim of reducing stress. For instance, there are yoga classes, healing sound meditation sessions, creative writing seminars, etc. These are all for cancer patients. What about the rest of us? The prevalence of autoimmune diseases is extremely high and there should be similar opportunities offered. There seems to be a gap in the services provided for individuals with medical problems unless it is cancer. I am not in any way or form stating that cancer patients should not receive these services. I am statint the opposite. They are wonderful experiences that I think should be expanded and provided for individuals with other chronic medical problems as well.
This leads me to wonder something.....I strongly believe that everything happens for a reason. I have this illness for a reason. Perhaps one of the reasons is that I am meant to work in the field of medical psychology. Although my past experiences have led me to believe my work should be strictly with children, the world may be telling me that I am meant to recognize the fact that increased psychological services could benefit individuals in a medical/hospital setting and to do something about it. I told my mom the other day that I wish I could work at a hospital and go around to visit patients and just talk with them. Just like I enjoy receiving visits from the therapy dogs, I would love to just have someone come and talk to me. The nurses and tech's do this when they can but they are often so busy with their work that they don't have much time for it. I think it would be so beneficial to offer patients a therapist who would come and check in with them daily while they are in the hospital. Especially for those who are hospitalized frequently, like me. It can be so lonely and stressful.
Another thing that bothers me is this....There are so many treatment centers (inpatient and outpatient) for individuals who need treatment for substance abuse problems. Why can't there be places similar to those for individuals who suffer from autoimmune diseases or other health conditions? Places where we can go and receive treatment for our medical problems that also incorporate other services like mental health treatment, yoga, exercising classes, etc. These centers are often located in California or other places near beaches, mountains, places that are beautiful and therapeutic in nature. I guess I wish I could go to a treatment center in California near the beach where I could enjoy the healing qualities of the ocean and the sun while receiving treatment for my disease. I could meet others who are going through what I am going through, and we can support one another. Those bonds can be so strong and can provide the foundation for lifelong friendships. I know that I have met two women in particular from writing this blog that have been so important to me. They have been there for me and it has been so wonderful to have two women who know exactly what I am going through. I have met many other wonderful people who have contacted me through the blog as well and I hope to get to know them more. I was hesitant about writing this blog in the beginning. I thought, "who will even read this?" I am pleasantly surprised at how many wonderful people I have met because of it. I never imagined that anyone would read it, or that anyone would be able to relate. I can honestly say that it has changed my life. Writing for me is incredibly cathartic and therapeutic. Writing about these experiences allows me to express what I am going through to the world. When other people write to me saying that what I said validated their experiences, well there is nothing better than that. I know I searched all over for people who were going through the same thing when I was first diagnosed. So I hope that individuals who are just diagnosed with Behcet's can find this helpful. I wish for it to be helpful for anyone, really, but especially those with Behcet's. Since the disease is so rare it can be that much more isolating and the need to seek others who can relate is huge.
If anyone knows of any support groups in Naperville or surrounding areas, please let me know! If anyone has attended any support groups (chronic pain or other groups) anywhere and is willing to share their experiences, please do so! I would love to hear if these groups helped and how they helped. I hope everyone is doing well. To those who may be struggling, hang in there and stay POSITIVE. I try every single day to combat those pesky negative thoughts with positive ones. It is a constant struggle. But keep with it, because the mind is a very powerful tool we can use to cope with the many obstacles we are faced with.
Tuesday, April 16, 2013
Where have I been?
It's been a while since I have written, and that's because I have been very sick. I have been in the hospital so frequently that I now know all the nurses and tech's on the third floor of Edward Hospital. :) It literally has been one medical issue after another. Although I am used to not getting a break from pain and medical problems, this has been worse because the pain has been intolerable and the issues have resulted in multiple hospitalizations. I have had so many LARGE mouth ulcers it's rediculous. I was just in the hospital last Monday through Friday and received large doses of IV solu-medrol (steroids). I was discharged Friday afternoon and kept my IV in so that I could go to the outpatient cancer center Saturday morning and receive one additional steroid treatment. Typically one IV dose of solu-medrol is effective in treating my ulcers and then I go home and take 20mg for a week or two and taper right off. However the steroids do not appear to be working as effectively as they used to. After six days of IV steroid doses the sores are finally beginning to heal. The bad news is that I now have multiple sores that began on Friday and are already incredibly large. Normally it takes weeks to get this size, they are now getting larger quicker. I don't understand how ulcers can be healing yet simultaneously new ulcers are getting worse. It doesn't make any sense to me. Especially on the high doses of steroids that I received. It is so frustrating I can't even put it into words. Every medical professional that has observed my mouth ulcers has stated that they have never seen anything like this, even if they have seen Behcet's patients before. My case is so different and so resistant that I have now earned the diagnosis of "Refractory Behcet's." I may have already mentioned this in a previous post. This means that my case is extremely resistent to medications and I am constantly in a flare up.
After this recent hospital visit, I also learned that I now qualify for a diagnosis of Intractable Pain Disease. Pain can be qualified into three main categories: acute, chronic, and intractable. Chronic pain and intractable pain differs in the duration and the severity of the pain experienced by the individual. Intractable pain is experienced for longer than 3 months and there is no break from the pain. This type of severe pain causes measurable physiological changes in the individual, such as increased blood pressure and heart rate, increased hormone production, grinding of teeth, etc. I have experinced all of these. I never get a break from my pain. Furthermore, patients with intractable pain are typically taking high doses of narcotic pain medication and at times this medication may not be effective. Of course the ideal solution to my pain relief would be to find a medication regimine that would put my Behcet's Disease into remission. Treatment of my pain with narcotic pain medications is simply treating the symptoms or putting a metaphorical band aid on the pain. It is not treating the underlying cause of the symptoms. I have tried approximately 20 different medications in attempt to put my Behcet's Disease into remission, none of which have been effective. It is important to note that many of these medications have been effective in treating other patients with Behcet's. That is why each case is so different.
Research has stated that there is no suffering worse than intractable pain. Less than 2% of the population suffers from this type of pain. I find this interesting because less than 2% of the popultion obtains a doctorate degree, so I fall into two separate categories of small percentiles! Intractable pain can be debilitating, which is very apparent in my case. It prevents me from working, from leading a normal social life, from exercising like I used to, etc.
Although receiving this diagnosis officially has put me at ease because I now know that there is something that can explain the pain I experience every day, it is also frustrating knowing that it is extremely difficult to control or treat. I try so hard to remain positive while facing seemingly insurmountable challenges. Unless you have experienced chronic pain it is difficult for you to truly understand what it is like to live this way. I am literally in pain every hour of every day, and it has been this way for the past 5 years. I know some of you may not believe this, but talk to my doctors or my family members and they can absolutely confirm the truth of this statement. I am starting to get worn down from this pain. I think I have dealt with it pretty well up until this point, but I am not sure how much longer my body or mind can take it. I will always continue to fight this disease. To those of you who cannot comprehend what it is like to live with chronic pain, imagine this. If you have ever had strep throat or canker sores, imagine you have strep throat every day in addition to multiple canker sores all over your mouth. Add migraines, joint pain, tendonitis pain, arthritis in neck, extreme fatigue, body aches, etc. And then you have the side effects from medications, so add heart palpitations, anxiety/panic attacks, pancreatitis, weight gain and severe bloating so bad that you have difficulty breathing, insomnia, and nausea/diarrhea. At times all of this happens simultaneously. I am not over exaggerating. Sometimes you wake up and there is a different medical issue you have to deal with, such as different types of infection, the pancreatitis that I mentioned that occurred as a result of taking a medication called Imuran, and various other medical issues. Since my disease causes inflammation all over my body, this leads to a variety of medical issues. Inflammation can be blamed for pretty much all of my symtpoms. This is what I go through every day. Forget working, going to happy hour, going to the movies, hanging out at the beach, having a family of my own, dating normally, etc. Forget going shopping for cute clothes, sitting outside and enjoying the sun, spending time with friends, going to restaurants. Should I be able to do any of these things, and it doesn't occur often, I am in pain the entire time. How many of you would feel like going to work or happy hour or hanging out with friends while having strep throat, being exhausted, and having multiple other pains? I am guessing not many. I am pretty much in bed every day all day. I have to get up and walk around so that I don't get blood clots. But I don't function normally. The disease has drastically interfered with my ability to function as a normal adult. I kind of feel like a child. I don't have my own house, husband, kids, job, any of those things that adults my age either already have or may be working towards.
I know this may be hard to read and you may be thinking to yourself STOP COMPLAINING. I don't feel this is complaining, I feel that I am educating others on what it is like to live with a chronic illness. Often times we sweep this information under the rug because others don't like hearing stuff that isn't all rainbows and unicorns. This is real. And there are so many people who are suffering in this world with different illnesses. You are not immune. It can happen to anyone at anytime. So don't take your life for granted. Live in the moment and experience everything to the fullest. Appreciate your friends and family members. Enjoy the little things in life. Don't worry about the little things. Please don't take your health for granted. Without your health, you really don't have anything. Thank you for reading. I hope that you can take something positive from this. Always have perspective....when you are stressed about something think that there is always someone out there who has it worse than you do. Please stay inspired, and inspire others to be the best person you can possibly be. Tell your story, your voice is important. Each one of us has a unique and important story to tell, so share it. You never know who you may help out in the process.
After this recent hospital visit, I also learned that I now qualify for a diagnosis of Intractable Pain Disease. Pain can be qualified into three main categories: acute, chronic, and intractable. Chronic pain and intractable pain differs in the duration and the severity of the pain experienced by the individual. Intractable pain is experienced for longer than 3 months and there is no break from the pain. This type of severe pain causes measurable physiological changes in the individual, such as increased blood pressure and heart rate, increased hormone production, grinding of teeth, etc. I have experinced all of these. I never get a break from my pain. Furthermore, patients with intractable pain are typically taking high doses of narcotic pain medication and at times this medication may not be effective. Of course the ideal solution to my pain relief would be to find a medication regimine that would put my Behcet's Disease into remission. Treatment of my pain with narcotic pain medications is simply treating the symptoms or putting a metaphorical band aid on the pain. It is not treating the underlying cause of the symptoms. I have tried approximately 20 different medications in attempt to put my Behcet's Disease into remission, none of which have been effective. It is important to note that many of these medications have been effective in treating other patients with Behcet's. That is why each case is so different.
Research has stated that there is no suffering worse than intractable pain. Less than 2% of the population suffers from this type of pain. I find this interesting because less than 2% of the popultion obtains a doctorate degree, so I fall into two separate categories of small percentiles! Intractable pain can be debilitating, which is very apparent in my case. It prevents me from working, from leading a normal social life, from exercising like I used to, etc.
Although receiving this diagnosis officially has put me at ease because I now know that there is something that can explain the pain I experience every day, it is also frustrating knowing that it is extremely difficult to control or treat. I try so hard to remain positive while facing seemingly insurmountable challenges. Unless you have experienced chronic pain it is difficult for you to truly understand what it is like to live this way. I am literally in pain every hour of every day, and it has been this way for the past 5 years. I know some of you may not believe this, but talk to my doctors or my family members and they can absolutely confirm the truth of this statement. I am starting to get worn down from this pain. I think I have dealt with it pretty well up until this point, but I am not sure how much longer my body or mind can take it. I will always continue to fight this disease. To those of you who cannot comprehend what it is like to live with chronic pain, imagine this. If you have ever had strep throat or canker sores, imagine you have strep throat every day in addition to multiple canker sores all over your mouth. Add migraines, joint pain, tendonitis pain, arthritis in neck, extreme fatigue, body aches, etc. And then you have the side effects from medications, so add heart palpitations, anxiety/panic attacks, pancreatitis, weight gain and severe bloating so bad that you have difficulty breathing, insomnia, and nausea/diarrhea. At times all of this happens simultaneously. I am not over exaggerating. Sometimes you wake up and there is a different medical issue you have to deal with, such as different types of infection, the pancreatitis that I mentioned that occurred as a result of taking a medication called Imuran, and various other medical issues. Since my disease causes inflammation all over my body, this leads to a variety of medical issues. Inflammation can be blamed for pretty much all of my symtpoms. This is what I go through every day. Forget working, going to happy hour, going to the movies, hanging out at the beach, having a family of my own, dating normally, etc. Forget going shopping for cute clothes, sitting outside and enjoying the sun, spending time with friends, going to restaurants. Should I be able to do any of these things, and it doesn't occur often, I am in pain the entire time. How many of you would feel like going to work or happy hour or hanging out with friends while having strep throat, being exhausted, and having multiple other pains? I am guessing not many. I am pretty much in bed every day all day. I have to get up and walk around so that I don't get blood clots. But I don't function normally. The disease has drastically interfered with my ability to function as a normal adult. I kind of feel like a child. I don't have my own house, husband, kids, job, any of those things that adults my age either already have or may be working towards.
I know this may be hard to read and you may be thinking to yourself STOP COMPLAINING. I don't feel this is complaining, I feel that I am educating others on what it is like to live with a chronic illness. Often times we sweep this information under the rug because others don't like hearing stuff that isn't all rainbows and unicorns. This is real. And there are so many people who are suffering in this world with different illnesses. You are not immune. It can happen to anyone at anytime. So don't take your life for granted. Live in the moment and experience everything to the fullest. Appreciate your friends and family members. Enjoy the little things in life. Don't worry about the little things. Please don't take your health for granted. Without your health, you really don't have anything. Thank you for reading. I hope that you can take something positive from this. Always have perspective....when you are stressed about something think that there is always someone out there who has it worse than you do. Please stay inspired, and inspire others to be the best person you can possibly be. Tell your story, your voice is important. Each one of us has a unique and important story to tell, so share it. You never know who you may help out in the process.
Sunday, March 31, 2013
Dealing with others
Everything in life is a process. It is an ongoing journey that moves forward. Part of the process in dealing with a chronic illness is social interaction and relationships. Our relationships with family members, significant others, friends, etc. change as a result of our illnesses. Some people feel they can't do anything to help us, so they do nothing. They drift away. Others stay and do whatever they can. There are also those people who don't believe that we are sick all the time, they think we are faking it. They don't understand nor do they try to. There are many different types of reactions that people have to our illness. It doesn't just affect us, it affects those around us. For example, I know I have to cancel plans when I am unable to leave the house because I am so sick. This is hard for others to accept (not all people, but some). I don't want to cancel plans. Trust me, I would much rather be hanging out with friends or family than lying alone in bed sick. But people often attribute it to me being flaky. Which is untrue. There is a social psychology construct that refers to this very idea. Let's say that someone does something negative or performs poorly on something. That person is more likely to attribute the reason to something other than themselves. However, when something good happens, they attribute it to their own internal characteristics.
I have had some difficulties with interpersonal relationships. Friends and family do the best they can, but sometimes we (us individuals with chronic illnesses) need more than the average person. I have come across people who don't want to hear me "complain." Yet they can complain for hours about the cold they have. I am not trying to say that anyone who isn't feeling well isn't allowed to complain about it. But I am saying that it's not fair to tell me that I am complaining too much when I'm sick. I happen to be sick all the time. This is my life. My entire life for now and the past five or more years has been centered around this illness and trying to achieve remission. Others don't understand. They don't get how it's difficult for me to leave the house because I feel fat and ugly and utterly disgusting because of the severe weight gain from steroid medications. They don't know what it's like to look in the mirror and not recognize the reflection staring back. My entire body is unrecognizable.
I just wish people would take more time to try to understand what it is like to have to worry about your health every minute of every day. To fear what may come next. To know that one minute things could be relatively okay, and then five minutes later things change drastically and I am being rushed to the hospital. That's how quickly things can change. Behcet's Disease is especially unpredictable. To prove this point, the other night I was okay. Sure I was having some symptoms from the medication, but it was manageable. Within hours, the pain and the bleeding were severe enough to warrant a trip to the ER. If you are dealing with an illness, how have your relationships wtih others changed? What do you wish that others would do for you?
Hang in there, everyone. Let's stick together. At least we can support each other and we know what one antoher is going through. Please leave a comment stating what kinds of difficultie you have dealt with with any relationships in your life. Thanks!
I have had some difficulties with interpersonal relationships. Friends and family do the best they can, but sometimes we (us individuals with chronic illnesses) need more than the average person. I have come across people who don't want to hear me "complain." Yet they can complain for hours about the cold they have. I am not trying to say that anyone who isn't feeling well isn't allowed to complain about it. But I am saying that it's not fair to tell me that I am complaining too much when I'm sick. I happen to be sick all the time. This is my life. My entire life for now and the past five or more years has been centered around this illness and trying to achieve remission. Others don't understand. They don't get how it's difficult for me to leave the house because I feel fat and ugly and utterly disgusting because of the severe weight gain from steroid medications. They don't know what it's like to look in the mirror and not recognize the reflection staring back. My entire body is unrecognizable.
I just wish people would take more time to try to understand what it is like to have to worry about your health every minute of every day. To fear what may come next. To know that one minute things could be relatively okay, and then five minutes later things change drastically and I am being rushed to the hospital. That's how quickly things can change. Behcet's Disease is especially unpredictable. To prove this point, the other night I was okay. Sure I was having some symptoms from the medication, but it was manageable. Within hours, the pain and the bleeding were severe enough to warrant a trip to the ER. If you are dealing with an illness, how have your relationships wtih others changed? What do you wish that others would do for you?
Hang in there, everyone. Let's stick together. At least we can support each other and we know what one antoher is going through. Please leave a comment stating what kinds of difficultie you have dealt with with any relationships in your life. Thanks!
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