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.
Friday, October 9, 2015
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.
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