So I have not been feeling very well...what else is new. Even though I am back on steroids, I am still symptomatic. And in addition to the normal symptoms I also have tons of side effects from the steroids. For instance, I have bad heart burn, anxiety, weight gain, and inability to control my body temperature all from Prednisone. The weight gain has been from being on steroids on and off for the past 7 years and is without a doubt the worst side effect of all. I don't even recognize myself anymore. I look into the mirror and the person peering back is a stranger to me. It is so difficult to not have control over the weight gain.
In addition to the significant flare up of oral apthous ulcers, which are extremely painful, I am now dealing with severe dental problems as a result of a medication called Actiq. Actiq is a fentanyl based pain mediation in the form of a lollipop. I have been taking this medication for approximately four years. Of course since the medication is slightly sweet, you assume there must be a little bit of sugar in it. However, there is no warning label/pamphlet regarding the high level of sugar that is in each actiq lollipop. When you take this, you hold it between your cheek and your back teeth. The sugar pretty much rots your teeth regardless of how much you brush and floss. Since there was no warning regarding the potential adverse affects of this medication on your dental health, I did not worry. I am now having to deal with the serious affects of Actiq on my teeth. I have a huge number of cavaties and have already had one of last teeth on the upper left extracted. Two of my teeeth have chipped at the gums, both bottom teeth on the right and left (very last molars). It is not typical decal that you would see in someone who eats a lot of sugar or has poor dental hygiene, which I do not. Instead of having cavities at the top of the tooth, the teeth are decaying from the bottom up....in other words, there is a gap between the gum and the tooth. This is causing EXTREME pain. I have been informed that I am in need of AT LEAST $10-12 K worth of dental work done in order to begin to correct the damage done by this medication. For the past year, I have been lucky to find a compounding pharmacy that makes Actiq for me sugar free, so I don't have to worry about future damage. But it is so difficult to have to deal with this issue on top of everything else that I am coping with. And knowing that it could have been prevented is extremely frustrating. I was informed that the pharmaceutical company that makes Actiq did have a sugar free version but took it off the market. That is rediculous to me. I have done extensive research and have found hundreds, if not thousands, have reported similar stories to mine. They all have severe dental issues resulted from Actiq. Some people have had all their teeth removed. And these are just the people who have reported it on online forums. This does not include the number of individuals suffering from the same problem who have NOT reported it.
I am normally not afraid of medical tests, dentists, doctors, etc. But due to the oral ulcers and the severe pain caused by them, I am terrified to go to the dentist today. I don't know how I am even going to get through the x rays because I am in so much pain. Not to mention the amount of pain I am in from the two affected teeth. The pain has spread into my jaw, ear, and head. I am currently on an antibiotic, as I was worried about potential infection so I contacted my dentist over the weekend. Anyway, I am very anxious because people with Behcet's have difficulty with dental visits because any slight trauma to the mouth (sharp instruments poking areas of the mouth) will cause a huge increase in mouth ulcers and flare up. Given that I am already in a bad flare up, I am scared that it will get so bad from the dentist visit that I will have to be hospitalized. I am trying to relax and calm myself down and have faith that I will get through this, because I know I always do. It just gets a little exhausting having to constantly deal with different medical issues. If it's not one thing, it's another.
I am awake in pain from my mouth ulcers, but mainly because of the excrutiating pain in my lower jaw. It is throbbing with pain. I am going to try and get some sleep, but I will keep you all updated on the dentist appointment. Not looking forward to the many dentist visits I will likely have in the near future. Nor do I know how we are going to finance these dental procedures. It is unfair that I have these costly procedures all because of the negligent individuals who make this medication.
As always, I am going to try and remain positive and hopeful. I know I can get through this. I have no choice but to get through it with as much optimism as possible. I will come out on the other side even stronger than I am now. If you are dealing with something difficult in your life, try to think about all the positive aspects, even if it seems there are not any positive aspects at all. There is always something good that can come from a situation. We do not have control over the events that happen to us in life, but we do have control over how we respond to these events. Therefore, we need to capitalize on the control we do have. Having a positive perspective can help us grow and become better individuals. It will also attract others. We know that positive people are easier to be around. I always say that positivity gains momentum and attracts other positive people. When we attract positive people and include them in our lives, they will in turn assist us in remaining optimistic when we are having a diffficult time. So keep your chin up, everyone! We can get through these challenges and persevere!
Thanks for reading.
Monday, January 28, 2013
Thursday, January 17, 2013
Naperville Sun Blog Log Article
Some of you are already aware that a journalist from the Naperville Sun contacted me about a month after I began this blog asking if I would participate in an interview for an article for the Blog Log part of the newspaper. I gladly accepted! One of my main goals in writing in a public forum is to increase awareness about Behcet's Disease. In addition, I want to utilize my combined skills as a doctor of clinical psychologist and my experiences living witha chronic illness to reach out and assist others. I really want to get involved in motivational speaking, although I am not sure how to go about getting started with this. If anyone has any information regarding ways to start motivational speaking, please contact me and let me know! Given the prevalence of social media and the way our lives revolve around it presently, I believe blogging has the potential to reach large amounts of people in a quick and easy manner.
I am thrilled that the article will run in the Naperville Sun tomorrow, January 18th, 2013. It can currently be located online by clicking on the following link:
http://napervillesun.suntimes.com/lifestyles/17612654-423/blog-log-the-dragonfly-project-by-mandi.html
The previous title of the article was "Overcoming Adversity with a Positive Spin," but it was recently changed to the name of my blog. I really liked the title that the wonderful journalist, Joy Davis, had come up with!
I am excited that things are starting to look up for me. This is a significant springboard for me to begin finding a purpose in my life that includes becoming an advocate and a voice for people with rare diseases and other myriad challenges that people navigate on a daily basis. As with my passion for helping others by being a doctor of psychology, I want to inspire others to remain positive even when faced with difficult life situations. In addition to the blog, the article, and motivational speaking, I have a strong desire to write a book that details my experiences and life story. Everyone has an important story to tell and you never know how that story may influence the lives of others.
I want to personally thank everyone of you who takes time out of your busy day to read this blog. It is very important to me and to my identity. When my entire identity was removed since the onset of this disease, I am now forced to find a new identity and new meaning in my life. I appreciate your ability to keep your minds open to learn new things. Learning about rare diseases and passing the information on to people you know is important. Knowledge is important and can have power when utilized in the right way. Again, thank you for reading and if there are any questions you want me to answer or specific information you ar einterested in knowing, please do not hesitate to comment on here. Should you want to contact me privately, please email me at mandifessler@gmail.com and I will get back to you in a timely fashion. Have a wonderful day, and STAY POSITIVE!
I am thrilled that the article will run in the Naperville Sun tomorrow, January 18th, 2013. It can currently be located online by clicking on the following link:
http://napervillesun.suntimes.com/lifestyles/17612654-423/blog-log-the-dragonfly-project-by-mandi.html
The previous title of the article was "Overcoming Adversity with a Positive Spin," but it was recently changed to the name of my blog. I really liked the title that the wonderful journalist, Joy Davis, had come up with!
I am excited that things are starting to look up for me. This is a significant springboard for me to begin finding a purpose in my life that includes becoming an advocate and a voice for people with rare diseases and other myriad challenges that people navigate on a daily basis. As with my passion for helping others by being a doctor of psychology, I want to inspire others to remain positive even when faced with difficult life situations. In addition to the blog, the article, and motivational speaking, I have a strong desire to write a book that details my experiences and life story. Everyone has an important story to tell and you never know how that story may influence the lives of others.
I want to personally thank everyone of you who takes time out of your busy day to read this blog. It is very important to me and to my identity. When my entire identity was removed since the onset of this disease, I am now forced to find a new identity and new meaning in my life. I appreciate your ability to keep your minds open to learn new things. Learning about rare diseases and passing the information on to people you know is important. Knowledge is important and can have power when utilized in the right way. Again, thank you for reading and if there are any questions you want me to answer or specific information you ar einterested in knowing, please do not hesitate to comment on here. Should you want to contact me privately, please email me at mandifessler@gmail.com and I will get back to you in a timely fashion. Have a wonderful day, and STAY POSITIVE!
Monday, January 14, 2013
Current Struggles
I have spent a great deal of time focusing on the physical/medical issues that I have suffered recently. I am back on steroids (ugh), and although they make me feel a bit better (decreased pain, increased energy), they also bring about various unpleasant side effects. One of the main side effects that has bothered me is weight gain. I was always quite thin in high school and college, weighing approximately 126 lbs. It is very difficult to state my weight in a public forum such as this, but I believe the honesty will help me cope. I now weigh 211 lbs due to the steroids. For the first few years that I was on them, I gained a little bit of much needed weight. However, the weight kept on coming. It is one of the most frustrating things that I have to deal with aside from the chronic illness. Some may say it is just temporary, don't worry about it. This is true. But it always seems that as soon as I am off the steroids, and lose like 30 lbs, I have to go back on and gain it all back. My face gets super swollen, which is called Cushings, or "Moon Face." The fat gets redistributed on your body, so it goes to your neck, abdomen, and face. It's so awful. I look in the mirror and see a stranger peering back at me. It is extremely difficult to go from being thin and feeling self confident and attractive, to feeling fat, disgusting, and unattractive. I feel like no one would want to look at me let alone be with me. I make a conscious effort to accept myself regardless of my weight....This is a difficult task.
We all know the saying that we are our own worst critics. This is so true for me. I am, and have always been, quite the perfectionist. It is just one of those characteristics that has been embedded in me since college. I had to get straight A's, had to do perfectly on everything I attempted. Had to always look good, etc. I think the hardest part is not having any control over the effects that the medications and this disease have on me. To feel so out of control is a terrifying thing. You have to be ready at all times for anything. Stress has an elevated meaning for me than for those who are considered healthy. There is always physical an emotional stressors and at times they are exacerbated during periods of crisis, which occur frequently.
As I was saying, I am typically dealing with physical or medical issues. Although on steroids they don't completely go away, I feel better enough to be able increase my performance of activities. I clean, go out more, and am just more active in general. But it also raises issues within myself about my identity because I am not working. When I am always sick and feeling awful, I don't care that I can't work. But when I am feeling better, it is horrible to have nothing to do. I need to feel productive. I want to accomplish things. I want to continue to help people. I want to advance my career....the career that has been sitting on the back burner for the past four years. When I am on steroids and feeling better for days at a time, it hits me emotionally. I start getting depressed because I constantly compare myself to who I used to be. I consider this the "before and after" dilemma. It's so hard not to think about who I was prior to becoming ill, because I was happy, social, successful, confident, active, busy, etc. To go from that to literally being in bed most of the time or just in the house alone is a dramatic shift in everyday functioning. Try and picture this happening to you. Four years of it....The longer it persists, the harder it is to cope with.
I need to remain positive. In spite of all the negative perspectives it would be easy to adopt, I need to be mindful of the positive attitude within me, even if it is small at times. It is easy for negativity to spiral downward.....Rather, I need to take whatever positive energy I have and focus on it, allowing it to gain momentum. If anyone has any ideas on how to continue to do this in the midst of constant struggles, please do let me know. I have mentioned before that I don't have control over what happens to me in life, but I do have a say in how I respond to these events. We always have a choice, even if those choices don't seem like they are what we want them to be. I can't control that I am sick. What I can control is how I react to the illness and how I move forward. I have to beat this disease. I have to figure out how to not let it define me...because for the past few years, that's all that has defined me. There isn't a day, an hour that goes by that I am not thinking about Behcet's and what it has done to me. It has sucked away the old me and replaced it with someone that is nearly unrecognizable. I used to think that my goal was to get the old me back. I have since revised this goal. Rather than getting the old me back, I have to accept the current me. I need to accept myself wherever I am in life. I need to work on being the best me I can be. If I focus on the past and who I used to be, I am potentially losing out on moments in life that can be meaningful. I guess I can also think of it this way....There is no old me or new me. There is just "me." All of it is me. The me that was, the me that is. We are always ever changing and evolving. How do we merge the different aspects of ourselves to create a whole rather than individual parts of ourselves? I guess this is something we always strive to achieve.
We all know the saying that we are our own worst critics. This is so true for me. I am, and have always been, quite the perfectionist. It is just one of those characteristics that has been embedded in me since college. I had to get straight A's, had to do perfectly on everything I attempted. Had to always look good, etc. I think the hardest part is not having any control over the effects that the medications and this disease have on me. To feel so out of control is a terrifying thing. You have to be ready at all times for anything. Stress has an elevated meaning for me than for those who are considered healthy. There is always physical an emotional stressors and at times they are exacerbated during periods of crisis, which occur frequently.
As I was saying, I am typically dealing with physical or medical issues. Although on steroids they don't completely go away, I feel better enough to be able increase my performance of activities. I clean, go out more, and am just more active in general. But it also raises issues within myself about my identity because I am not working. When I am always sick and feeling awful, I don't care that I can't work. But when I am feeling better, it is horrible to have nothing to do. I need to feel productive. I want to accomplish things. I want to continue to help people. I want to advance my career....the career that has been sitting on the back burner for the past four years. When I am on steroids and feeling better for days at a time, it hits me emotionally. I start getting depressed because I constantly compare myself to who I used to be. I consider this the "before and after" dilemma. It's so hard not to think about who I was prior to becoming ill, because I was happy, social, successful, confident, active, busy, etc. To go from that to literally being in bed most of the time or just in the house alone is a dramatic shift in everyday functioning. Try and picture this happening to you. Four years of it....The longer it persists, the harder it is to cope with.
I need to remain positive. In spite of all the negative perspectives it would be easy to adopt, I need to be mindful of the positive attitude within me, even if it is small at times. It is easy for negativity to spiral downward.....Rather, I need to take whatever positive energy I have and focus on it, allowing it to gain momentum. If anyone has any ideas on how to continue to do this in the midst of constant struggles, please do let me know. I have mentioned before that I don't have control over what happens to me in life, but I do have a say in how I respond to these events. We always have a choice, even if those choices don't seem like they are what we want them to be. I can't control that I am sick. What I can control is how I react to the illness and how I move forward. I have to beat this disease. I have to figure out how to not let it define me...because for the past few years, that's all that has defined me. There isn't a day, an hour that goes by that I am not thinking about Behcet's and what it has done to me. It has sucked away the old me and replaced it with someone that is nearly unrecognizable. I used to think that my goal was to get the old me back. I have since revised this goal. Rather than getting the old me back, I have to accept the current me. I need to accept myself wherever I am in life. I need to work on being the best me I can be. If I focus on the past and who I used to be, I am potentially losing out on moments in life that can be meaningful. I guess I can also think of it this way....There is no old me or new me. There is just "me." All of it is me. The me that was, the me that is. We are always ever changing and evolving. How do we merge the different aspects of ourselves to create a whole rather than individual parts of ourselves? I guess this is something we always strive to achieve.
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