Thoughts....

My world is upside down. I am having a pretty bad day. I was in pain all day. I was barely able to walk, as my achilles tendons hurt so bad that I could not flex my feet or ankles. Of course, now that it is midnight, I am feeling much better. I want to be able to function.

I find myself thinking about the way I used to be. The person I was. I was happy and energetic. Always busy and engaged in something whether it be work, school, hiking, spending time with my dog Bella and my cat Chase. I had wonderful friends while living in Arizona. I built a life for myself there, and I worked so hard to be able to enjoy it.

I try and stay positive. But it is hard when everything I worked so hard for has slipped away, and I don't know if I will ever get it back. It has been four years since I worked. I finally got my doctorate in clinical psychology, and haven't worked since. Ironic. I wanted to be a doctor for so long, and I finally acheived it. And I have been unable to work as a "doctor" yet. I have to hope that there will be a day that I get everything back. I no longer want to be a bitter person, looking at the world with disgust. Living in a prison that is my body and my disease. This disease defines me right now. It is difficult not to let it.

I feel so incredibly lost. I have no direction. It is difficult to look at those I know and see them achieving things...moving on. Whereas I feel stuck. I feel like a shell. Hollow. There are things that I want to do....I want to be a mother so bad. I have so much love inside me to give, and no one to give it to. I know that I must start with myself, and deep down I do love myself. But this disease penetrates my every being down to the core. Where does the disease end and I begin?

Dealing with chronic illness and chronic pain is an isolating journey. I have drifted away from those who used to be a part of my life. The life that I lead is difficult for others to comprehend. What I used to be capable of doing physically has changed....and unless you have dealt with this kind of thing, it can be difficult to understand. I know that. But everyone has things in their lives that is difficult to deal with. Regardless of what they are, these challenges should bind us as a race, bring us together, connect us. But I have found that that is not always true.

I long for a life where my very existence does not center around this disease....Where I am able to be free of pain....I am not sure that is ever going to happen. Therefore, I guess I have to learn to live in a manner in which I create the most out of what I am capable of doing. Hopefully, that will allow me to pave a road where more is possible. Negativity breeds isolation, fear, closedmindedness. I do not wish to be a negative person. I believe everything happens for a reason. Perhaps I have not learned whatever it is I need to learn from this lesson in order to move forward. It is difficult for me to share this part of me. I don't want to appear weak. But I do not believe I am weak. It takes more courage to share this experience and to face it head on than to hide from it and avoid it. So share I will. And I will conquer the inner demons that prevent me from creating the life I wish to have.

Awake in Pain...While the World Sleeps (well most of it)

I had a hard time coming up with a title for this post, because I know that I am awake in pain quite often. Lately, I have not been in this kind of pain. It feels like my mouth and throat are burning. Or like thousands of little men are waving their razor sharp swords around, slicing every bit of flesh they can find. The pain is so intense that my eyes are watering with tears. Not the tears from "I'm actively crying," but tears that happen automatically when your body is experiencing something painful. Almost like when you are cutting onions and you cannot control them. I want to put my head in a pillow and scream at the top of my lungs. God it hurts so bad. I don't want anyone to have to experience this pain, but I sometimes wish that everyone could feel it so they can understand what I am going through every day. It is so difficult. But I always try and put on my happy face.

I am currently taking pain medicine, a kind that dissolves in my mouth, and it is not quite kicking in yet. Even when it does, it will only take the edge off. It will never remove the pain entirely. That is definitely one of the difficult things to handle. I am on a lot of pain medications, and even with that treatment, I still experience pain. The high level of pain that this disease causes cannot be completely removed by even the strongest of pain meds. On a scale of 1 to 10, otherwise known as "The Pain Scale," 1 being the lowest....I am at about an 8 right now. When pain meds kick in, I will probably be at around a 3 or 4.

I wish I could be at a 0. This week I went to the doctor twice. Once I found out that I have achilles tendonitis, and today I found out that I have lymphadentitis. Lymphadentitis is from a small sore I have on my wrist which is causing my lymph node in my right underarm to swell up. It is extremely painful. My immune system is fighting correctly, which is a good thing, But I have to take 5 days of antibiotics. For the achilles tendonitis in my right ankle, I need to do stretching and ice twice daily. It is always something.

Going to go try and go back to sleep. Hope everyone is resting peacefully. Thanks for reading.

Recent Dr. Appointment

So I went to the doctor yesterday. My Primary Care Physician. I have three main doctors. My PCP, rheumatologist, and pain management doctor. I know I still have to let you all know what my symptoms are, I will do that right after this. I had to get what's called an INR check, which means I get my blood checked to determine if my blood is clotting properly. This is because I have had a DVT, or deep vein thrombosis...A blood clot in my lower left leg. I test positive for Factor V Liden, which means that I have a genetic predisposition to have blood clots. I have to be on Cumadin for the rest of my life.

I have been having a lot of pain in my achilles tendons. Especially in the mornings. I will wake up and I can barely walk because the pain is so bad. However, as the day progresses, my left achilles tendon will continue to hurt and it has been extremely swollen. The doctor pushed on my tendon and I jumped back so fast in pain. He said that I have achilles tendonitis. The only thing that can be done is icing it and stretches. Should I continue to have problems with it, I will need physical therapy.

The doctor and I joked about how this is just what I need....one more issue. But when I left, I wasn't laughing. I am getting to the point where I can't even keep track of all the medical problems I have had. There is always something that hurts, something that is wrong with me. Just when I think I am getting better and making progress, something like this pops up. But I have to be positive and glad that it's nothing more serious. At the age of 33, I would have neveer expected that I would have this many medical problems. It's not something I thought about. Don't take your health for granted. When you are healthy, you can do so many things. Not that people who have medical issues cannot, but it makes things much easier. When you come home stressed after a long day at work, rather than being frustrated that you have so much to do, stop and think that you are lucky to be able to do all of the things you are doing. What I wouldn't give to be able to work and do all the things that I hoped I would do at this point in my life.

I felt pretty good today....SAY WHAAAT?

That's right. I felt good up until now! Granted I have only been awake since about 10am, so that was only 4 hours. But that's typically all I get. And when you are used to being sick and in pain all the time, 4 hours is well received. You are all going to think I'm a fake now! JK. I really am sick all the time. It really is awful.

I went out and ran errands with my mom today. We do that every Sunday. I was acting all goofy because I felt pretty good. My mom and I were talking a lot about my life, and how I feel as a result of always feeling icky. I feel like I cannot accomplish anything. I feel useless and purposeless. Worthless. Like I am just a shell. I feel I have so much to offer, but I am not able to utilize my skills since I am in pain and never have the energy. Imagine having strep throat, the flu, and having had no sleep for a few days....That's how I typically feel. My throat hurts every day, so much so that drinking water, talking, and eating are difficult. Even swallowing my own saliva is painful. Most mornings when I wake up, there is a gigantic amount of drool all over my blanket because I cannot swallow my saliva while I am sleeping. Disgusting, I know. But it's the truth.

Anyway, I was telling my mom that should I get my life back in order and am able to get a job, I fear failure. I used to be confident, especially when it came to my professional life. I was confident in my abilities as a child therapist. I was rarely nervous or anxious about anything. I now feel anxious about so much. Little things, too. It is difficult to describe, but I feel so awful because I want my life back. Yet I am terrified because I feel I wouldn't even know where to start. I know it would fall into place when the time is right. But it's hard because for the past four years I have not been able to do much of anything. Four years. That's a long time. Imagine being sick every day for four years straight. Actually, I have been sick every day for the past five years, but one of those years I was completing my internship. I forced myself to go to work every day. Had I not been able to complete it, I would have been kicked out. I would have then had to go through the application process all over again. The process of applying for a predoctoral internship in clinical psychology is extremely competitive. There are more people applying than there are available internship positions. Therefore, about 2,000 people in my year all over the country did not get matched. I spent about $5,500 on traveling fees. The goal was to get 5-7 interviews. I got 17, which is one of the highest in my cohort. Should they see that I had previously been matched, but was unable to finish the internship, it is not likely that I would be amatched again. Despite the fact that it was due to medical reasons, clinical directors are more apt to want someone they know is physically capable of showing up for work every day.

I worked so hard. Thinking about it right now makes me really upset. I think of my friends who were in my classes and I know how successful they all are now. That was supposed to be me. I was supposed to have my own practice by now, or at least be preparing to start my own practice. I should have had a large portioon of my student loans paid off. Rather, due to financial difficulties since I am unable to work, I am in default on all of my loans. That is a topic for another day. I don't need to think about that right now and get stressed out.

I hope everyone is having a wonderful day. I wonder what you all did this weekend....please share some fun things you did this weekend!

Past Journal Entry #1

Ocassionally I will post journal entries that I have written in the past. They really convey the raw emotions that I continue to experience. A lof of the emotions are the same, but in different contexts. I will say that it is extremely difficult to share these journal entries, as they contain my innermost thoughts and feelings. It is scary to open up like this. However I believe that sharing this will be beneficial for myself and hopefully others. I hope you are able to relate to me in some way, and if not, I hope you take the time to understand what it is like for me to live with this disease. Someone you know may be feeling the same way. That someone may even be you. Thank you for taking the time to read this, it means a lot that people spend the time to open their minds to read my stories.

May 20, 2010

It has been a month since I have written in my journal. I wish I had bettter information to report. I was just in the hospital AGAIN for 5 days. I am still in HORRIBLE pain. I mean EXCRUTIATING pain. It is really driving me crazy. I am so incredibly frustrated, yet I still put a smile on my face. I feel if I portray I am strong on the outside, that it will make me feel strong on the inside. I am constantly fighting. I feel so incredibly lonely. I have very few people who call me to check in and talk. That's all I wish that people would do is to take a few minutes to call and see how I am doing. That is not to say that I don't have friends or family who do do this. I just mean that I can go days without talking to people. I understand that everyone is busy and has their own lives. I just feel left out. If only others were able to understand what its like to have your entire life ripped out from underneath you. It makes me wonder, was I even a good enough friend to deserve people calling me? I like to think that I am. A trip to the hospital yielded absolutely NO visitors. My mother always visits me, and this time I wanted her to have a break. She works all day and then comes to visit if I am in the hospital. But other than her, I typically don't receive any visitors. I started a new medication called Cellcept. I have been praying since the first day I took it that this will be the one that will work for me. I cannot live like this, this is no way to live. There is no quality of life. I miss my job. I spent so much time, money, and effort to get my doctorate. I am so proud of myself for achieving that even in light of the seemingly insurmountable challenges I encountered. Yet I persevered. I miss helping people. I miss play therapy with the kiddos. I even miss meetings to discuss clients. I miss relationships with colleagues. I miss doing things, having a social life, having fun, being healthy. I miss getting coffee in the morning before work. I miss living on the West coast, where I had the best and most caring friends anyone could ask for. I am sick of writing about the things I miss, yet I need to get it out so that it is no longer eating me up inside. It is so difficult watching everyone go about their lives while I remain stuck. Years have gone by and I am still at the same place. No medications have worked, I am still in bed most of the day, in pain, fatigued, lonely. I only hope that I am closer to finding an effective treatment plan. I have to be hopeful. Without hope, what do I have? Nothing. If I lose hope, I may as well give up. And I am not a quitter. I do not give up. I did not quit school when I failed my competency exam, and boy did I want to. I moved forward, stronger than ever. When I was ill and wanted to quit school because it was too difficult, I kept going. I relied on the support of my friends and  family to get me through it. My inner strength helped me trudge through the difficulties with dignity and pride. I have to keep my chin up, deal with the cards I have been dealt. I know things may be challenging, but it could always be worse. I need to try and focus on what I do have rather than what I don't have. I need to keep trying. I cannot give up, I won't give up.

Insomnia, Party of One...

So, I know I haven't yet fully discussed the nature of my disease. I will get to that.

For the past five years I have been sick EVERY DAY. I may have a few okay - good days sporadically. While most people are healthy the majority of the days of the year, and sick every so often.....The opposite is true for me. I am sick the majority of the days of the year, if not all. I have learned to deal with chronic pain and fatigue. It is now a part of my life. Some days, I am in so much pain that I go insane. If that is the case, to the hospital I go. At one point, I was hospitalized at least every two months or so. Not this summer but the one prior, I was in the hospital almost the entire summer, on and off. Other days, the pain is constant, but tolerable. I've learned that I don't have a choice but to deal with it.

When dealing with chronic pain, it is inevitable that sleeping is challenging. I may quickly fall asleep, but I cannot stay asleep. Sometimes, however, I cannot fall asleep until 6am. When this becomes recurrent, I begin to sleep during the day and stay awake all night. It is a combination of isolating and also fun. You see, night time is sometimes when I feel my best. I can spend literally all day trying to rest up, take meds, etc. in order to feel well. It may take all day, and it may not happen at all. But when you all are likely getting ready for bed, I am getting ready to read, write, watch tv, or do anything else to keep me occupied. It is quite difficult. It gets pretty lonely. I want to talk to people, but everyone is asleep. I used to be quite talkative, had plenty of friends whom I went out with and spent time with. I now am alone all day long. I have the company of my beloved dog, Bella, and my cat, Chase. I live with my mother, so she works hard all day. It's definitely tough to be alone all day when I am an innately social being. I crave social contact. However, this disease is beginning to change that. I now get anxious to go out. I definitely do get out, when I feel up to it. But for the majority of the day, I spend it in the house. I am afraid that if I am out and start to feel very ill, that I will get stuck somewhere and won't be able to get help.

You may ask, what happens that you don't feel that well? Well, I will get into symptom details at a later time, but my throat hurts every day. It feels like I have strep throat all the time. I have migraines, joint pain, arthritis in my neck, and chronic fatigue. I used to be very physically active, running 5 miles a day, hiking, mountain biking, yoga classes, and other things. I am now lucky if I can walk my dog around the block without feeling like I am going to pass out. Qutie a lifestyle change. I may feel okay one minute, but then feel so awful the next. So bad that I have to sit down or hold onto something while I stand/walk. It's embarassing at times. If I am leaning down to look at something at a store, it is difficult to get up because my joint pain is that intense. People look at me like I have three heads. I just look at them like "What, do you have a problem?" No, I really don't do that. But sometimes I feel like it.

Anyway, insomnia is not exactly a symptom of Behcet's, but it's a secondary symptom. The many medications that I take can also affect my sleep cycle. When it's quiet at night, I spend time ruminating about how my life used to be. I know this is not a good idea, as it inevitably leads to depressive feelings such as sadness and hoplessness. I think of how happy and energetic and full of life I was. I smiled all the time. I loved interacting with people. I enjoyed everything about my life. I was super passionate about my career, and invested so much time and energy into it. I want that life back. I want to feel worthy of something. I feel worthless, unlovable, bitter. I don't want to feel this way. It's so hard to watch friends get engaged, married, have kids, successful careers. I am very happy for my friends, don't get me wrong. But at the same time, I always wonder....will any of this happen for me? Or am I doomed to live a life where chronic pain and illness rule my life? Hard question to answer. This disease is so unpredictable, making it difficult to make plans or get a job. I haven't worked since I graduated in 2008. I miss my job terribly. I never thought that once I graduated, this would be my life.

Guest Appearance: Behcet's

My Life Shortly Before Behcet's...In a Nutshell

What is Behcet's Disease?

A vast number of my posts will likely discuss what it's like living with a chronic illness. Two illnesses, actually. However, the main focus will be on Behcet's Disease as it accounts for the majority of my health problems. It is unlikely that you have heard of Behcet's Disease, or BD, because it is a very rare autoimmune disease. Most of the doctors I have encountered are not even aware of BD.

Behcet's is pronounced "Beh SHETS." This disease is a multisystemic disorder that results in inflammation of the various blood vessles throughout the body. This inflammation is also known as vasculitis. Being an autoimmune disease, BD is characterized by a cluster of symptoms that arise as a result of an individual's immune system essentially attacking itself. There is a genetic component to BD, however, many patients do not have a member of the family with BD. Rather, there tends to be a genetic predisposition for autoimmune diseases in general within the family. For instance, individuals in my family suffer from different autoimmune diseases, although I am the only one with BD.

Behcet's is NOT contagious. Although the statistics differ, generally speaking, there are approximately 14,000 cases of BD in the United States. The disease is typically prevalent in individuals from the "silk route," which includes people from the Mediterranean, Middle East, and Far East. However, BD is found in people regardless of their ethnic backgrounds. In the silk route, BD mainly affects men. In the US, females are more likely to have the disease.

As I mentioned earlier, there is typically a genetic predisposition to BD. However, an environmental trigger is necessary to bring about symptoms. In my case, stress and a bad case of strep throat, in addition to my genetic predisposition, resulted in Behcet's symptoms. There is little known about the cause, prognosis, and treatment of Behcet's Disease. Like many other illnesses, each case differs depending on the individual. My case is severe. I have been told by numerous doctors that my case is one of the worst cases they have ever seen, mainly because it is very resistent to medications. I have tried approximately 23 different treatment regimines, ranging from oral pills to daily subcutaneous injections. Nothing has been effective in putting my Behcet's Disease into a long term remission.

Typically, autoimmune diseases, BD included, can be seen in stages. There are times when an individual is relatively symptom free. This is called a remission. Those periods when an individual is suffering from symptoms is called a "flare up." Although I have displayed symptoms for approximately 8 years, I have been sick every single day for the past 5 years.

I will not go into detail about every aspect of BD. If you would like to know more, you can research Behcet's Disease and find out additional information. You can find out about symptoms and treatment. I will discuss specific symptomsas well as other aspects of the disease and how it affects my life in future posts.

What is The Dragonfly Project....by Mandi?

Hi there, my name is Amanda Fessler, but I also go by Mandi. I am 33 years old and I have been wanting to start a blog for quite some time. I have experienced numerous challenges for the past 8 years of my life, and I believe now is the time I would like to share my experiences with you.

Where do I begin? I guess by describing what the dragonfly project is. I call this blog The Dragonfly Project by Mandi, but I also call it The Dragonfly Adventure. As I brainstormed how to make my blog unique, yet stay true to who I am and represent what I want to convey, I came across dragonflies. First let me say that I don't believe there are coincidences in life. I think that everything enters your life for a specific purpose. Whether it be people, ideas, experiences, etc. That being said, the idea of dragonflies came to me at a certain point, and I could not discount the meaning of this. And that is how the dragonfly project was born.

I started to research the meaning of dragonflies. I soon discovered that dragonflies have different meanings across cultures. For instance, the Chinese view dragonflies as somewhat of a good luck charm. Native Americans often consider dragonflies synonymous with happiness. Overall, the dragonfly symbolizes prosperity, good luck, strength, peace, harmony, and purity. I like to add one more to that list.....Hope.

Further research indicated that dragonflies are representative of the process of self discovery. The irridescent wings that characterize dragonflies may reflect the process of an individual uncovering his/her own abilities, or true self, while removing doubts that he/she may cast on his/her sense of identity. I got my doctorate in clinical psychology, and it was then that I truly discovered who I am as an individual. I also learned to apply some Buddhist principles, one of which is living in the moment. I found that dragonflies live a very short time, and therefore, another principle that I recognized is living life to its fullest, without regret.

After recognizing the various symbolism inherent in a dragonfly, I decided to call this blog "The Dragonfly Project." I believe that each person has a unique and important story to tell. When we share our stories with others, we pave the way for human connections to be formed. In addition, we can pass on life lessons that may be applicable to many people other than ourselves. I strongly believe in becoming a better person, day by day. The more we learn about ourselves, the more insight we have into our behaviors, thoughts, and feelings. This allows us to grow and develop into the best person we can possibly be. Since dragonflies embody many positive characteristics about what it means to discover oneself, to create meaning out of our experiences, I decided to incorporate this idea into this blog.

A great deal of what I have to say may be difficult to read. I have encountered so many challenges in my life. However, I want to be able to look at these experiences in a positive light and to share what I have gone through with anyone willing to listen. I hope to reach out to others who may be going through difficult times. Forming connections based on shared experiences can be powerful tools for growth. It is with these ideas in mind that I move forward with this blog. I aim to teach others about what it is like to live with a rare autoimmune disease. To share my thoughts and feelings and daily struggles with others. Perhaps you are also living with a difficult medical condition. Or possibly a mental health condition. Or maybe someone you know is suffering from an illness of some sort. If you find yourself at some point not knowing how to relate to this person, I hope to help with this. If you are the one struggling, I hope to provide an outlet for you to express your thoughts and feelings.

I want to be able to apply the principles that stem from the symbolism of dragonflies into my own life, so that I can focus on living my life rather than remaining stuck. If you too feel like you are stuck in any aspect of life, or you just would like to become more positive in your attitude towards life, join the DRAGONFLY PROJECT! Together we can share stories and move forward as a group, rather than in isolation. From this point on, we learn to live like a dragonfly!