Hospital-Week Long Stay

Subsequent to the Emergency Room visit that occurred approximately two and a half weeks ago, I was admitted to the hospital on December 19th. I have been taking a medication called Imuran to treat my Behcet's in attempt to put me into remission. For the past two months I have taken 50mg daily. The medication can cause some serious side effects, and so I was reluctant to take it. However, I have already taken those meds that pose little damage and none of them were effective. Each drug I try now will likely cause increased side effects and has the potential to cause some serious medical issues.

On the morning of December 19th, I walked into the kitchen for breakfast around 6:30. I had a little pain in the middle of my abdomen, directly below my ribcage. It was not that bad at all, just felt as if I had pulled a stomach muscle or something. I was only able to eat a little bit of my breakfast as the pain began to worsen. Within two hours, the pain had escalated from mild to extremely severe. My stomach felt quite bloated and it was uncomfortable to breathe, sit, lay down, and walk. Any position was painful. I had to lie on my back, and although the pain was still severe, it was the only position that did not cause the pain to become more intense.

I called my mother at work. She encouraged me to contact my doctor on his cell phone. He instructed me to try a liquid antacid and to wait a couple of hours. If the pain did not subside, I was to go to the ER. My mother immediately left work, went to the drug store, and came home. I took the antacid right away, wishing that this simple over the counter medication would treat the pain. While my mother was in transit, I called my youngest sister to have someone to talk to. I was terrified because I thought I may have appendicitis, problems with my gall bladder, or something else. My imagination was running rampid with all these ideas as to what the cause of the horriffic pain could be. She tried to distract me, make me laugh, etc. Yet nothing could take my mind off the pain I was experiencing. This was without a doubt the worst pain I had ever experienced in my entire life. And I have a pretty high tolerance for pain, considering I deal with it on a daily basis. Anyway, I digress.....My sister and mother thought I may have gas, so I walked around, ate a cracker, drank sprite....nothing eased the pain. In fact, it got worse despite the fact that I had no idea it could possibly get any worse. I begged my mother to take me to the hospital. I wanted to call 911. We called my doctor back and he agreed I should go. My mother drove me and every little bump in the road sent me into screaming fits.

Upon arriving at the ER, we discovered that numerous patients were awaiting treatment. Some of them were suffering from symptoms of a stroke, so they were taken in first. I sat in a wheelchair silently begging for them to take me back. I was screaming in pain. Others who were waiting stared at me, and I did not care. The pain was constant and I was going insane. It had been this way for about 5 hours at this point. Finally, I was taken back and put into a bed. The ER was so busy that I was taken into a room with four beds and only curtains separating the beds. This was a kind of waiting room but they were able to start an IV and start assessing me. Shortly after I was taken to a real room. I was not allowed food or drink because they needed to determine what was going on. My mouth was so dry because of the ulcers. That was the least of my concerns, although it was annoying. The doctor did not give pain meds right away because he wanted to see me first. He did an examination and ordered a CT with contrast to assist in diagnosing the problem. The nurse administered pain medications, however they did not even take the edge off.

The CT results revealed acute pancreatitis. Pancreatitis can occur for a variety of reasons, including alcohol consumption, high cholesterol, trauma to the abdomen, gall stones, or medications. I don't drink, had no trauma to my abdomen, do not think that I have high cholesterol, and the CT did not reveal gall stones. Therefore, it was assumed that one of my medications was the culprit. However, Behcet's Disease causes inflammation in my body, and pancreatitis is essentially inflammation of the pancreas. So I believed that it was due to the Behcet's.

Without delay I was admitted. They said I would probably be there for a few days. My mother went home after 8 hours in the ER. The pain did not subside at all for about 2 days. Laying on my back was the only way I was somewhat comfortable. I attempted to lay on my side, but it felt like a bowling ball was in my abdomen. Words cannot express the pain I was experiencing. When you have pancreatitis, the pain is constant. I am struggling to find a comparison that would allow everyone to comprehend what this felt like. The treatment for acute pancreatitis is a large amount of IV fluids administered very quickly in order to flush out the medication that caused it, in addition to decreasing the inflammation. I was on high doses of IV pain medication, but the pain meds did not begin working until the second day. I also received an ultrasound on the second day to rule out gall stones for sure. As suspected, it was not gall stones. In addition to my Primary Care Physician (PCP), a gastro doctor was brought in on the case. He informed me that Imuran was the medication that had caused pancreatitis. Statistics show that 1/100 people taking Imuran can get pancreatitis. The third day, an anasthesiologist visited and put me on a PCA, a device that administers pain medication through IV when I push a button. The PCA effectively alleviated my pain.

I was unable to eat or drink, even water, for over 3 days. It was torturous. At first I did not really care because I was super nauseaus. But slowly, that subsided and I was starving. When you have pancreatitis, the enzymes that are responsible for assisting in breaking down foods are elevated. The normal Lipase levels in people without pancreatitis is 70-700, somewhere around there. My levels were 3100 the first day, escalating to 3600 the second, and then quickly began decreasing. The third day my Lipase level was 2000. Fourth day, 839, etc. I was in the hospital for a total of 6 dats. I started introducing clear liquids into my diet on the fourth day. That went well, so the next day I was upgraded to soft foods, low fat diet. It is important to re-introduce foods slowly in order to allow the pancreas time to rest and reduce inflammation. The low fat diet went well, and the next day I was discharged (Christmas Eve). I was so lucky to be home for Christmas!

I am doing pretty well, but I have to be aware of what I am eating and drinking. I have to limit sugars and carbs, and mainly eat a low fat diet consisting of proteins, fruits, and veggies. So far, everything has gone pretty well. I still have a little pain at times, but NOTHING compared to what I felt when the incident began. I have to stop the Imuran of course, which is depressing because it is yet another medication that I am unable to take in the hope of effectively treating my Behcet's. I have tried approximately 24 medications or so, and the number of meds that are left to try are dwindling. And those that remain are very dangerous. I don't know what to do. I am feeling quite hopeless and out of control. It is so hard to not know whether something is going to help, whether I will get my life back, whether I will be able to work or get married or have kids. These thoughts are constantly running through my head. It is so stressful having a rare and chronic illness that is uncontrolled. It is becoming increasingly isolating and depressing. Although I try to keep my spirits up, at times it is just so hard to do so. I am thankful that I am recovering because that pain was absolutely awful. No one should have to go through that. My dad has had pancreatitis, and he agreed. All the doctors and nurses concurred, stating that it is an extremely painful thing to experience.

To wrap things up, I will follow up with my PCP to check my Lipase level and determine how I am doing. I will also have an appointment with my pain management doctor in Chicago Jan 7th. My Rheumatologist told me to rest and cancelled my appt for Jan 10th. If anyone has any ideas for me in terms of coping with everything, please let me know. I am always open to ideas or suggestions people may have to reduce stress or to continue to think positively. I generally try to find the positive in any situation, but the longer this disease persists this way, the more challenging it is to cope. Again, thanks for reading! I hope everyone had a wonderful Christmas holiday and was able to celebrate with family and friends. I am truly thankful for my family, especially my mother. She is always by my side, especially during difficult times like the pancreatitis. Thank you, Mom, from the bottom of my heart.

Dating with Behcet's

I have spent some time writing about the many difficulties that come with living with a chronic illness and chronic pain. There are obviously physical challenges, psychological/emotional challenges, and difficulty with interpersonal relationships. Especially dating. It is extremely difficult to date while simultaneously coping with a severe and chronic illness.

I struggle the most with when to tell a man that I have this disease. I have tried it both ways, and it always seems to fail. I never used to have problems getting a boyfriend. From high school through graduate school, I was always in a relationship. Now that I am ill, it creates problems with dating that other people don't have to deal with. When I tell people up front that I have a rare autoimmune disease that prevents me from working right now, but that I am currently working on finding an effective treatment to put me into remission, guys get freaked out. I don't tell them what disease I have, nor do I make it sound horrible. I don't act like I need attention or someone to take care of me. I portray my situation in the most positive light possible. Don't get me wrong, I am sure hearing that kind of information early on is extremely overwhelming for the other person. But what else am I supposed to say? I don't like to lie. When someone asks me "How was work today?" I don't want to lie and say it was fine. I tell them I am taking some time off after getting my doctorate and am working on writing a book, which is the truth. People are curious and tend to ask a lot of questions about my disease. I typically respond by saying we can discuss more about it when we get to know one another better, but I just wanted to be honest about my situation. I have had men say they don't care, but then later on they end up saying it's too much for them to handle.

I don't know how to handle this anymore. I just want to find someone who will love me for me and who can accept the illness as just a small part of my identity and that it does not define me entirely. I am so sick of being treated like some sort of "freak." It is difficult when people fail to look at me as a whole person. Most of the time I feel like some sort of freak, mainly because of the weight I have gained from steroids. The way I look currently is not the way I normally look and unfortunately people cannot look beyond my looks. It makes me feel like I am unlovable and that I will never find a man who can love me and support and accept me. Everyone deserves to be loved. And I am not exception. I want to get married and start a family. I truly hope that in the near future I can find a man who will be just what I need, someone who complements me as a person and and someone who will allow me to share my love with him.

If anyone has any tips on how I can make this dating process run more smoothly, please do not hesitate to let me know!

As always,thanks for reading!

Severe reaction to medication...Trip to ER

Some of my medications are filled at a compounding pharmacy. It is a family owned pharmacy and those who work there are extremely kind and helpful. Last week I went to pick up a prescription refill, and the owner of the pharmacy inquired as to how I have been feeling lately. I informed him that I have not been doing well. He and his daughter brought up the topic of a medication called Low Dose Naltrexone (LDN). I am well aware of this medication, as my father had sent scholoarly journal articles regarding the usefullness LDN in a variety of diseases, specifically autoimmune diseases. It is also utilized in patients with MS, cancer, among many other problems. Since the articles specifically mention the effectiveness of LDN in treating Behcet's, I have been researching the drug. The literature that discusses treatments for Behcet's is quite limited, so you can imagine how interested I was in further pursuing my research.

LDN is designed to repair the body, particularly boosting the immune system, and works while the individual is sleeping. It is not FDA approved or patented, and is very cheap. It is typically considered a safe medication and does not have side effects or is not known to interact with medications. One exception to this is narcotics. Given that I am on high doses of narcotic painkillers, I immediately dismissed this as a possible treatment for my Behcet's. The typical dosage used to be 50mg, but has recently decreased to 4.5mg. The pharmacist informed me that since the dosage had been reduced, although still remaining effective in the treatment of chronic illnesses, it could be a possible treatment for me to consider. He then gave me a referral to a naturopathic/alternative medicine doctor who often prescribes LDN. Not many doctors prescribe this medication due to the fact that it is not patented and other doctors in the community typically frown upon those who do prescribe it. I decided it couldn't hurt to consult with this doctor and see what his thoughts were.

I was immediately placed at ease upon scheduling my appointment because the woman who I spoke with reassured me that I was "coming to the right place." She continued to inform me that this doctor is very helpful and has effectively treated numerous patients with diseases similar to mine. When meeting with a doctor who was completing his residency at the office, he obtained a thorough history of my medical issues, including the medications that I am currently taking. He strongly pointed out that given  the number and high doses of pain meds that I take, I would not be a candidate for LDN as a potential treatment. I was disappointed, but was still interested in seeing what the doctor had to say.

This doctor was very friendly, and stated that his first principle in working with patients is "do no harm." Which is actually what every doctor attempts to do. We discussed my case and he then introduced LDN. He informed me about the medication including how it works, how it may be extremely beneficial to me, and placed significant emphasis on the fact that this medication has ZERO side effects and is extremely safe. He continued by reiterating how safe the med is especially when compared to the numerous medications I have taken that are quite poisonous/toxic to the body. Needless to say I was extremely concerned about the potential interaction between LDN and the painkillers. He put me at ease, saying that it would absolutely not interact with the pain meds. He prescribed me wih the maximum dose, which is 4.5 mg.

This visit occured on Monday, December 10th. I waited to take the pill until about midnight, as I was going to sleep. Within approximately 30-45 minutes, I became violently ill. I experienced severe abdominal cramps, diarrhea, excessive sweating, runny nose, prickly / burning on every inch of my skin, and worst of all, akathisia. For those of you who aren't aware of what akathisia is, it is a severe form of restless leg syndrome, but affects the entire body. It is difficult to explain the subjective experience of akathisia. I have suffered from this many times, but this was by far the worst. It feels like your entire nervous system is out of control, which it is. It is almost similar to anxiety/panic, yet different. You feel the need to stretch every muscle in your body in attempt to rid yourself of the horrible feeling. The body thrashes, especially legs and arms. After feeling this way for about 30 minutes i woke my mother up, telling her what was going on and that I needed to go to the hospital. While she was getting ready, I begged her to call 911. She insisted on driving me herself.

Upon arriving at the ER, my mom asked for help getting me into a wheelchair while she parked the car. I was wheeled to the registration, where a nurse asked about my demographic information and why I was there. I told her the best I could, as I was extremely sick and uncomfortable. Out of nowhere, my entire body cramped up and the motion catapulted me out of the wheelchair and onto the hard wood floor. I hit my head and the entire right side of my body. The nurse asked for help, and they successfully got me into a room. My mother had to discuss what was going on with the doctor as I was in and out of consciousness and was unable to communicate much of anything. It was terribly frightening. It was then that I began to receive what my mother and I believe to be improper treatment. Once my mother informed them that I was taking LDN, they immediately treated me like a drug addict. This is because Naltrexone is also utilized as a treatment for individuals with an addiction to opiods. It works by entering and filling the opiod receptor sites in the brain so that the painkillers are unable to be effective. If one takes this medciation in conjunction with narcotic pain meds, it will send the individual into extreme withdrawal. This is essentially what happened to me. I was experiencing sudden withdrawal symptoms from narcotic pain meds.

I was given Ativan, Benadryl, and Dilauded (pain med that I take). At no point in the visit was I assessed for the head injury that I incurred by falling out of the wheelchair and onto the floor. The doctor and nurses were not kind at all. They were not informing my mother what was going on. At one point, they asked her to leave the room because the convulsions/akathisia had ripped my IV out and the salene was spraying everywhere. They cleaned me up, and my mom re entered the room. At this point, they felt that I was okay to go home. Typically, whenever I have a bad case of akathisia, my PCP always hospitalizes me because the high doses of Ativan to counteract the reaction to the medication causes severe imbalance and dizziness, thereby making it unsafe for me to get up and walk around. This is exactly what happened. Whenever a patient is discharged from the ER, the doctor is required to discuss the diagnosis and treatment with the patient or whomever is with that patient. Since I was rather out of it, the doctor should have discussed the information with my mother. The doctor did not come in to discuss anything. Instead the nurse, who was very unfriendly and who fought with my mother about blood test results that indicated that my blood clotting numbers were1.1. Given that I am on Cumadin, my therapeutic range should be between 2-3. The nurse insisted that this 1.1 was perfectly fine, which in fact, is dangerous for me. When this INR number is below 2, I am at risk for a blood clot.

When I got home, I walked straight into a wall so hard that I hit my head and fell down. My mom was so upset because she believed I should never have been released, and I agree. When my mother informed the doctor that I was prescribed the LDN to treat my Behcet's, the doctors weren't too forthcoming about believing this. I think that they assumed that I was taking this medication in order to comply with a rehab program of some type because I was addicted to pain medications. This is ABSOLUTELY not the case, and I have multiple doctors, including my pain management doctor, who can vouch for this fact. My mother requested that the doctor contact my PCP to determine the correct course of actions, which like I mentioned previously, usually means admitting me for observation and continued treatment in order to reduce the side effects of the medication reaction. The doctor did not contact my PCP.

I apologize for this being such a long post, but this was an EXTREMELY traumatic event for me. I was so excited to try a treatment that was supposed to be low risk, and it ended up having drastic consequences. It was such a scary experience that I am still trying to process everything. Today I contacted the pharmacy and the prescribing doctor to inform them about the incident. I am going to file a formal complaint to the hospital about how I was treated. There were more specific incidents, but I will not go into all of the details. It is important to be an advocate for yourself because otherwise no one else will do it for you. My mother is in agreement with me and is completely supportive of my choice to move forward by contacting everyone involved.

I could discuss additional details about this experience, but then this post would be even more lengthly! I am going through so many different emotions....Anger, frustration, sadness, hoplessness, etc. I was totally let down by the fact that not only did this treatment show any promise, but it resulted in an extremely dangerous circumstance. People can die from going through this typie of withdrawal. I am so glad to be feeling better, don't get me wrong. But now I need to advocate for myself so that this doesn't happen to anyone else. I believe the prescribing doctor was neglectful in that he did not examine me, didn't take blood, failed to contact any of the 3 doctors involved in my case. He should have AT LEAST contacted my pain management doctor to determine whether or not she thought it would be safe for me to take LDN in conjunction wtih my pain meds. I should not have been given this medication and been told that there would be absolutely no interaction with anything and that it ws perfectly safe. To try and wrap things up, I feel that I was treated unfairly by multiple parties. This is the one hosptial that I go to as it is close by and I often need to be hospitalized when complications occur from my disease. I strongly hope that I was not labeled a "drug seeker" or "addict," as this will remain in my record and will complicate things every time I seek treatment there. I understand that there are many people in the world who suffer from substance abuse problems, but I should not have been judged without the doctor obtaining adequate information regarding my case. All he had to do was contact my PCP, and look through  my previous health records to learn that I take my medcations as prescribed.

If anyone has any ideas as to what they think I should do moving forward, please let me know. I am not sure if the doctor who prescribed this can be sued or not. I was told by a friend that unless you have lasting damage from being mistreated. I am really confused and angry and saddened by what happened. Thank you for taking the time to read this long post. I am so thankful for my wonderful mother who is always there to take care of me. I don't know what I would do without her. I hope that I am able to get some sort of closure with this incident, by informing the risk management/patient advocate at the hospital of the circumstances around this visit. Like I mentioned, I could potentially have some kind of head trauma that was completely ignored by the doctors/nurses.

Please feel free to let me know if anyone has experienced something similar, or how you would proceed. :)

Hippo or Human?

I often joke that while on steroids, I transition from a human to a hippo because of the severe weight gain caused by steroid treatment. It's easier to joke because otherwise I will get upset about it.


I am going to discuss what it's like being treated with steroid medications, because this treatment is a difficult process to undergo. The medication causes various undesirable side effects, and many of them even require treatment with other medications to control the side effects. For example, on steroids I get severe panic attacks and anxiety and therefore need Xanax in order to decrease the anxiety and treat panic attacks. Some of the side effects are as follows:
-Severe panic/anxiety
-Severe weight gain, water retention, redistribution of fat to places like abdomen, neck, face, legs.
-Cushings....which includes symptoms like "moon face"-face enlarges and literally takes on a moon shape
-Mood changes
-Increased anger
-Insomnia while on medication, and when you taper off the steroids you experience extreme tiredness
-Increased sweating
-Severe swollen glands in underarms
-Heartburn
-Increased appetite and craving sugar/sweets (and even after eating a meal, I often experience a hunger pain which causes increased eating in order to get rid of the uncomfortable hunger pain)
-Irregular heartbeat/heart palpitations
-Swelling of hands/feet/ankles
-Depression
-Increased predisposition to infection due to weakened immune system
-Easy bruising/bleeding
-Bone pain
-Thinning skin
-Changes in menstrual period (when I was on steroids for 5 years, I did not get a period for 2 years even after stopping the steroids)

This list includes side effects that I have experienced. All from one medication. It is so horrible. Prednisone is a wonderful medication in that while on it, I feel great. I can function a lot better. It is considered an anti-inflammatory drug, which is why it is so effective in treating my disease. Behcet's Disease results from an overactive immune system and causes a severe increase in inflammation throughout the body. Anti-inflammatory medications therefore reduce overall inflammation. Steroids are the only medication that work for treating my disease. And due to the severe and long term side effects, it is not recommended that I take steroids for long periods of time. Even a few months is not encouraged. In the past, I was on Prednisone for 5 years consecutively. Since then, I have been on and off them numerous times.

What I am about to discuss is an extremely difficult topic to approach. It is a sensitive topic, so please respect what I have to say and realize how upsetting it is for me to share this.

In the past two months I have been on steroids twice for a period of two weeks each time. I will give you an idea of the severity of one of the main side effects: weight gain. Prior to taking steroids, I weighed 126lbs. At 5'10" that is quite thin. I was always super active in sports and ate all the time. I just could not gain weight. After the 5 years, I gained 90 lbs. I needed about 30lbs to bring myself up to a normal weight for my height. Yet 90 lbs made me overweight. I literally do not recognize myself when I look in the mirror. I see a stranger peering back at me. My face is super swollen and round. My stomach went from being flat to having a large round "pooch." I now weigh 213lbs. I don't think I look that big, but still, knowing that I weigh that much is so awful. I look at pictures of myself prior to the weight gain, and I want that body back. I struggle because just when I am on a roll and start losing 30 lbs, I have to go back on steroids and then I gain it all back. I just had that happen....I am back to weighing what I did prior to losing the weight. It is so hard to have my weight fluctuate this frequently. I no longer fit into my old clothes. They sit in boxes in the basement. Most days I don't want to leave the house because I feel so ugly. I feel people are looking at me because it looks different than just normal weight gain. Steroid weight gain is different because of the way the fat is redistributed. The moon face is the hardest to deal with.

My self esteem has been largely effected by my different appearance. I spend many hours wishing I had my body back. I feel like I am in a stranger's body. It is difficult for others to comprehend how I feel unless they have been through this situation. In a society that places such an emphasis on appearances it is so hard to cope with this. It really is stressful. I try to accept myself for where I am at moment by moment and remind myself it is temporary, but it doesn't seem that temporary. Especially when I think of the long term....Steroids, being the only effective treatment, will likely be a part of my treatment plan long term. Therefore, the weight gain will always be there. I will constantly lose weight and then gain it back. The weight gain influences every aspect of my life. Dating especially. I have had men tell me that in my pictures I look hot, but not in person. Even though they are aware it is temporary and it will go away. It is so hard to hear this. I am not even given a chance because I am judged by my weight and also by the disease that I have.

Dealing with Behcet's Disease is challenging enough. But adding other issues such as steroid side effects exacerbates the challenges. I am terribly depressed because of how this disease and medications have influenced my life. Thank you for reading this. It was difficult to write, and I was brought to tears while writing it because it profoundly affects my emotions. It is a constant internal struggle to deal with the change in my appearance. Please comment if you have anything you would like to say to help me cope with this. I welcome any recommendations or just words of wisdom and support. God Bless you all.

Hospital Frequent Flier Miles

I was just in the Emergency Room about a month ago due to severe ulcers on my skin. I received intravenous steroid treatment and immediately started improving. I was sent home with oral steroids to take for two weeks. The Prednisone definitely helped me in terms of improving my symptoms, but unfortunately Prednisone also causes severe side effects for me. Such as anxiety and panic attacks, shaking, weight gain, increased sweating, insomnia, heart palpitations, etc. So once I had tapered off the steroids, of course I got a bad flare up right away. This time it was in my throat, which is typical. I have had those ulcers in my mouth and throat every day for five years. Although, this time the steroids actually kept them at bay for about week. It felt so nice to be able to eat or drink whatever I wanted sans pain. I could talk and everyone could understand me. I didn't drool whenever I slept. It was great feeling so wonderful even though it was for just a short period of time.

So the sores got so painful that I was encouraged by my doctor to go to the hospital again. It's pretty sad when you go to the hospital and are recognized by nurses and other staff/administration. I always say they should offer frequent flier miles for those of us who are in the hospital a lot. Even though I was in the ER for hours, I was in good spirits. It always throws people off because they think that I am not really that sick. I am, but I don't enjoy being sad or depressed all the time. I am so used to being sick and in pain that I just have learned to deal with it. Looks can be deceiving. Just because I don't want to be miserable while I am sick doesn't mean I am in any less pain or any less deserving of pain medication. My mom always says, "don't pretend that you are fine. Don't act happy or they will send you home thinking you are fine." I always explain that I am in pain, but I am inside alone so much that it's nice to get out and have social interaction, even if it is in the hospital. That's pretty sad.

I received IV treatment with steroids again and was sent home with oral Prednisone. I will have to take them for about two weeks. I know that as soon as I start tapering down past 10mg my symptoms will return. My time of feeling okay is pretty limited. But some time of feeling better is better than nothing! I will take what I get. But it is also difficult because I feel good, and then get sick again. It's so frustrating knowing there is a medication that makes me feel good and allwos me to function, but I am unable to take it long term. It's a tease.

I have been reading a lot and relaxing. It's been getting pretty cold out, which I enjoy because I am always warm. I used to despise the cold weather. I guess things change.

What's been going on?

The past few weeks have been filled with doctor's appointments and errands. I was in the Emergency Room about three weeks ago because my skin ulcers were so bad that the doctor's were worried about cellulitis and sepsis, which are serious infections. Sepsis is an infection of the blood. I was given an injection of 40mg of steroids and some pain meds. I was sent home with oral steroids to take for the next two weeks....I may have mentioned some of this in a previous post.

I just finished the steroids a few days ago. I had lost approximately 9 lbs from being on  steroids the previous time. In just one week, I had gained all that back. 9 lbs. I was feeling so good and now I feel awful. When you get off steroids, you feel even worse because they mask everything and make you feel great. Now, I am getting a bad flare up, I am exhausted, have severe anxiety, and pain.....Most of this from the steroids. I am STARVING all the time, which is another side effect of the steroids. It's awful!!! I am psychologically dealing with the issues associated with my fluctuating weight. To say that is difficult, especially being a woman, is an understatement.

I also got a flu shot a couple weeks ago. I started Imuran, which is an immunosuppressant. The main side effect of this medication is an increased susceptibility to infection. So that makes it difficult because I have to limit the places I go or the people I come into contact with. My doctors stress how important it is that my family and close friends get a flu shot so I can limit the potential for infection. If I were to get sick with something, I would undoubtedly be hospitalized.

I have been sleeping more during the night, which is great! Typically I sleep during the day and am awake all day. The stress associated with an abnormal sleep cycle causes a propesity for an exacerbation of symptoms. Additionally, while I am asleep during the day, people are functioning out in the world. Working, running errands, engaging in social activities with friends and family, etc. My maladaptive sleep cycle creates not only physical symptoms, but it also limits me from engaging in appropriate social interactions with others. This isolation prevents me from coping adequately with the myriad stressors associated with chronic illness and chronic pain. Social support is important for anyone, but especially individuals suffering from medical and psychological diagnoses.

Despite the ongoing pain and medical issues, I am staying strong and positive psychologically. I have been in a good mood for the majority of past few weeks. I have been reaching out to others and talking with friends on the phone. I have been trying to keep busy and helping my mother with things. I am attempting to remain hopeful that the medication I am on will be effective and will send me into remission. I will be keeping you all updated!

 Thanks for reading. Please feel free to comment on any of my posts. Also, if you are suffering from any kind of illness, whether it be medical/physical or a psychological diagnosis, please PLEASE feel comfortable sharing your story. I think it is important to speak out and create connections. This is one of the main reasons I created this blog. Speaking out opens doors and creates the opportunity to be heard. Being heard validates one's feelings and experiences, allowing the individual to internalize feelings of self worth.

Chronic Pain...

Living with chronic pain is a constant struggle. There are so many aspects to pain that you would not think about if you aren't dealing with it. For those who experience pain as a short term thing, as something that is transient, consider yourselves lucky! It is a miserable experience....Having said that, I have learned a lot from having to cope with pain on a daily basis for the past 6 years. I have been in pain for 8 years, but the first few years I was not sick every day.

Since a lot of my pain is centered in my mouth and throat, it is difficult if not impossible at times to do some of the most simple things, such as eating, talking, drinking, etc. Some of the things we almost always take for granted. Being a therapist, it is quite challenging to talk all the time while dealing with constant pain that feels like I have strep throat every day. I often have to go to the hospital because I am severely dehydrated due to an inability to drink water. Imagine having strep throat for three people...having open wounds that cover the inside of your mouth....that descend down your throat and esophagus. It feels as though there are thousands of tiny men constantly cutting the indside of my throat with scissors. And trying to eat or drink? Awful. Feels like pouring acid on the open wounds. Yet if you don't drink, you become dehydrated. Necessary evil.

I also have pain in many other areas. Such as joint pain in my ankles, knees, wrists. Muscle pain from fibromyalgia. Pain in my ribs occassionally from costochondritis, which is inflammation in the cartalidge in the ribs. That feels like all your ribs have been crushed. I have recently struggled with pretty severe tendonitis in my achilles tendons, in my right knee, my right thumb/hand, and my left wrist and arm. Tendonitis is an annoying pain to have amongst all the other pain. Migraines, sores on my skin that throb and burn, etc. It is definitely not fun. It seems like every day there is something that hurts. It doesn't feel right.

I was going through the drive thru at Starbucks today, and randomly thought: I wonder what other people feel like when they are healthy? I am sure what I experience as "healthy," or feeling pretty good is still not equivalent to what a "normal" or healthy individual feels when they are not sick or in pain. Unfortunately, one can never truly feel what it is like to be another person. But I often wonder how other people's lives would change if they suddenly had to deal with chronic pain tomorrow. Ask yourself that. What if tomorrow you woke up, and nothing was the same? You just felt sick. And for years and years, it escalated to the point where you could no longer work, you had to move away from where you had built your life, some of your friends disappeared, you are more and more isolated....Imagine you are no longer the "you" that you have worked so hard to be. Every day you are sick, fatigued, can barely walk at times from being so exhausted. The pain is horrible all the time, always there. You are constantly taking pain medications and other prescriptions, all which come with side effects. Your entire life revolves around this disease. You look in the mirror and no longer recognize the person staring back. That is what my experiences have been like with chronic pain. Of course, there is more to it, but it's difficult to explain it in a way in which another can understand what their life would be like if they had chronic pain as a part of their daily life.

Just like everything, chronic pain affects everyone differently. As difficult of a journey as it is, and as much as I would not wish this on anyone....I can say that I have a choice in terms of how I view my experiences in this world. I can choose to stay negative, and to feel like nothing in life will ever be worth living. Or I can choose to say yes, this is a difficult journey. Yes, it is a constant struggle. But I will remain positive at the core. I will not take things for granted. I will appreciate those who play supportive roles in my life. I will enjoy everything that I can, because let's face it. There is ALWAYS someone worse off than you are. I try and remind myself that whenever I have a really tough day. There is someone in this world who is suffering more than I am, someone who has lost someone they care about, someone who is more ill than I am. Someone dying. I know that's not fun to think about, but it reminds me of how lucky I am to be here. And it allows me to take a positive stance and reach out to those who may be suffering as well. I want to be able to use my experiences to connect with other people and to create a voice for those who feel unheard. I have said before that being in chronic pain is bad enough, but then to feel this pain and also feel unheard is even worse. Take a moment and be thankful for what you do have. And if you are lucky enough to have a life without chronic pain, take advantage of those little things that you may not be able to do if you were in pain.

Past Journal Entry #2

This is another excerpt from my personal journal. Again, I stress how difficult it is to write these entries for the world to see. This entry is dated September 9, 2011

I am starting to decrease my steroid dosage again. I cannot believe I have gained ALL of the weight back that I had previously lost so quickly. I feel like I made so much progress, was starting to move forward. And now I feel as though I have taken many steps back. I am so incredibly lonely. I have never felt this isolated...ever. It makes me cry and feel so depressed. I am so tired of this disease controlling my life. I feel like I want people to hear my story-Iwant to share my experiences with people who are willing to listen and who want to be educated. I don't know what to do anymore! I am completely lost. When will my life turn upward? I know I have a choice to respond in a positive way, and I do try. I try so hard. But I pray that I am able to get into remission. I am so good at what I do, and I have wanted to help kids and families, to feel productive, to continue on with my life journey. There has to be more than this. It's so hard to watch others live, do things on the weekend, have fun and exciting things to look forward to. My body and self-image has taken such a negative spin. When will I look in the mirror and recognize the face that is looking back? When will it be MY turn to find someone special who will be by my side-to marry me and start a family with? When? I fight this battle each and every day with the hope that I will move forward and live the life I have always wanted. I can deal with being sick, but I want to be able to rise above and function. I want to function like a normal adult. I worked so hard to obtain my doctorate. It was such a huge accomplishment-even though I had so many medical challenges that I kept to myself throughout the process. Now I just want to use my education. I want my body back. I want my friends and social life back. I am so afraid that this is going to be all I get. I feel so lucky to be alive and have my family and my dog and my cat as support. I am so inspired and motivated to do so many things, but the roadblock is so heavy. I need help moving this roadblock so that I can continue on the path I was meant to. I am proud of myself for fighting this battle. I will not give in.

MY Behcet's

MY Behcet's describes how I was diagnosed with Behcet's, how it manifests in terms of symptoms, and how it digs a hole into the very center of my being.

Back on the 'Roids

So I have not been feeling well for the past month....what else is new. It's not just that. It is also that I have been getting new pains and problems. I have previously been diagnosed with tendonitis in one achilles tendon as well as in my right knee, I now have it in the other achilles tendon, my right hand near the base of my thumb, and my right arm from my elbow to my wrist. It is extremely painful! I was also in the Emergency Room on Sunday, October 21, due to severe skin ulcerations. I often get these but they typically remain small. This is the second time that I have had more than 8 of them that are larger than a quarter. Gross, painful, and swollen. I took a round of antibiotics for them, in case they were infected. However, a visit to my Rheumatologist in Chicago prompted a visit to Edward Hospital in case they are causing sepsis, which is an infection in the blood. Thank goodness that didn't happen, but they did start me on IV steroids, and sent me home with oral steroids. I have been off steroids for a while now, approximately 7 months I think. I really hate being on "the 'roids," as I call them, because I tend to get awful side effects.

For instance, I get severe anxiety. Even typing this is difficult because I am so anxious inside. It feels like I am crawling out of my skin. Along with this comes heart palpitations, sweating, insomnia....like I need more insomnia. :) And the most beloved side effect of all....weight gain.

Some good news!!! I had written to Senator Dick Durbin a few months back regarding the status of my student loans. Since receiving my doctorate and being unable to pay my loans, which I already feel like a total loser for, I have been receiving steady harassment for my inability to pay. I have filled out what's called a total and permanent disability form, which my doctor had to fill out the majority of the form. I have completed a total of 4 of these forms, mailed them in....and then was greeted by a "Denial" due to the fact that there was an abbreviation in it, or a medical code, etc.... Even if the information written was all correct, and them my poor doctor had accidentally included a code, they sent it back. I seriously think that they are just doing this to deny me, thinking I willl surely give up. Sorry, I can't give up people. This is my life, and lucky for you, and unfortunately for me, I have nothing to do but make sure that form is completed perfectly so that you have no reason to deny it.

Like I really want to be that person who doesn't pay for what I accomplished. I would gladly pay back my student loans....That would mean I have to be healthy enough. And that has not happened in the past five years...YET. I sincerely hope that it is going to get better....ANYWAY, I digress.... I received a letter in the mail a few days ago from Senator Dick Durbin stating that he and his office will contact the federal government and the lenders in attempt to get these loans written off. Suffice it to say that I have written numerous people in my journey thus far. I wrote President Obama, and got a "general" response stating that they are sorry for my struggles, but that the administration is currently working on the healthcare system.

Given the lack of responding by people I have written to, I was so excited to receive the letter from Senator Durbin! He stated someone from his office will be contacting me shortly. This alleviates a lot of stress. Knowing I have simply been heard means a lot to me. But knowing someone has not only heard, but is taking that one step more and doing something to help means the world to me. Thank you, Senator Durbin, for your sympathetic and supportive letter! :)

If anyone is reading this, have a great day....

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!