Another hospital visit......I should receive a special hospital room

Yes, it's true, the hospital was lucky enough to have its most frequent visitor as a patient again this past week. Fortunately, I did not have to be admitted. The ER doctor strongly encouraged admission, but my primary care doctor voted against it because due to my immune system being compromised, he didn't want me exposed to any more germs.

The reason for my visit? Gross information will follow....But the purpose of this blog is to be honest, so here goes. I started feeling very ill a couple of weeks ago. I think I wrote a post about it. I ended up being hospitalized for cellulitis infection. I was given antibiotics, one being Cleocin. I had taken Cleocin about two months prior for a tooth infection. I did have bad side effects, namely diarrhea, that lasted the duration of the course of antibiotics. But it quickly subsided once I had completed the treatment. This time, however, the diarrhea turned serious very quickly. I had diarrhea for about a week before I began having serious abdominal cramping pains. I was in the bathroom all the time. The pain was excrutiating. Then, there was blood in my stool. This has happened to me before approximately two years ago when an antibiotic killed all the good bacteria in addition to the bad bacteria, resulting in what's known as a C Diff infection. It's not fun, severe pain and diarrhea (with blood), and can be VERY dangerous. It can be fatal. Since I am on cumadin and have a clotting disorder, this exacerbates the situation because there is a higher risk of increased bleeding. Last time I was extremely close to needing a blood transfusion.

My doctor encouraged me to go to the ER to get IV fluids (since I was dehydrated), pain meds, and to get tests done to determine the diagnosis. I had a CT scan of my abdomen, which showed a lot of inflammation in my colon, which is called colitis. The C Diff test wouldn't be back until the following morning. I went home and was really suffering. I was unable to eat much. I had to push fluids to avoid further dehydration. I was truly miserable. I was emotionally a mess because I am so sick of dealing with one medical complication after another. I never get a break! It's so hard to deal with. It's really starting to wear me down and its becoming quite overwhelming.

The next morning I had not heard from the hospital regarding my test results. A few times when I went to the bathroom, it was all blood. This really terrified me. You could possibly hemmorage and die if the cause of the bleeding is not determined and treated effectively. That is scary to think about. I called around noon for the test results, only to find out that they were negative. Although I did not want a C Diff infection, at least that way I would know the cause and know how to treat it. Now I was stuck.....I know that Behcet's can cause the exact same symptoms that I was experiencing. But it was too coincidental that the symptoms began while taking the antibiotic. So I went to the doctor on Friday and he believed that the symptoms were due to the antibiotic. I hope this is true. The symptoms have been slowly subsiding over the past few days, and I think I am close to being done with them. But now I am getting tons of new mouth and skin ulcers, so a new flare up is starting.

I feel utterly lost. Laying here day after day after day.....My life's purpose is slipping away. I am alone. I am trying to remain hopeful. I try to keep myself busy to keep my mind off the daily struggles that I am faced with. I feel like I am a burden on my poor mother, who is my primary support. She takes care of everything for me. Takes me to the hospital, always stays with me, picks up my medications when I am unable to, takes time off work to drive me to doctor appointments, and much much more. I don't know what I would do without her. But I can't help but feel like a total burden. It's hard to feel like this....to come to terms with needing help with things. Prior to moving here, I was so independent. I accomplished a lot of things that many people won't accomplish in a lifetime. I obtained my doctorate all the while trying to fingure out what was going on with me medically. It's hard because I spent all that time and energy and money to get a doctorate so that I could be financially stable so that when I met the guy I would marry, I would be settled and ready to start a family. I now have no money. I have nothing to look forward to. People don't think of the little things that get affected in one's life when dealing with a chronic illness. And it is difficult for anyone to comprehend unless they are affected.

Well, thank you for letting me rant and vent. It is sometimes necessary to get everything out so that I can replace the negative energy with poitive energy in order to go on. Can anyone relate to anything like this? Feeling like a burden, feeling like their life is over? Having to change your entire life because you can no longer do the things you used to? Please share, if you feel comfortable, what kinds of things you have noticed that are difficult to accept and adjust to now that you have been ill for a while. I appreciate the comments becasue it allows us to support one another. Thanks again for reading. Hope everyone is doing fairly well, and as always, my prayers are with you.

Is the hospital my second home?

So yes, I am back in the hospital. This is gettiig really annoying....

Was feeling so awful the past few days. Not only did I have horrible pain in my throat from flare up, but I also had severe headahe, body aches, fever, chills, felt like I was hit by a truck, etc. I thought I had a sinus infection. But it turns out that I have cellulitis in an ulcer on my left calf. I would post a picture but it's too disgusting. Makes me feel ugly.

I was admitted through the Emergency Room and was feeling much better after receiving steroids and pain meds. Today, my Mom, sister, brother in law, and two cute nieces surprised me and came to visit. My Mom and the girls made me a Hello Kitty from build a bear (so cute) and the girls made me pictures (so sweet). They are so adorable and the older one is so genuinely caring at the age of four. I mean she is just so previous. It was such a wonderful surprise. I rarely get visitors other than my mom so it was a great time. I was exhauted near the end and sweating my butt off from the steroids.

I am resting now and thought I would write a short post. I really can't wait to get home...and stay there! I am done with the hospital for a while. But I am on the floor that I am usually on and I feel better because I know all the nurses and tech's since I am here so much. It's pretty sad that I know the nurses all by name. Lol. This hospital is much better than in the city mainly because they are all private rooms. I just get used to that, I guess I am spoiled.

I have just been reading and watching movies on demand. Anyone with Behcet's reading this, how have you been feeling? any flare ups? Please let me know what is going on. I hope you are all doing well and staying positive. Take good care of yourself and let me know if you have any questions or need support.

Mandi

Pain, Pain Go Away.... Don't come back another day!

As usual, while most of the country is asleep...I am awake. I cannot seem to sleep more than an hour or two consecutively. At night, that is. During the day for some reason I can sleep for many hours. My throat has three ulcers in it, and I have usually only dealt with one in my throat at a time. Don't get me wrong, it is always accompanied by ulcers all over the rest of my mouth. The pain is excrutiating.

Still dealing with the weight gain issues from the Prednisone. I don't intend to sound like a broken record, as I know I have discussed this before. But that is how prevalent these side effects are in the way they influence my day to day functioning. I mean, every time I walk by a mirror, I reluctantly glance at myself and immediately wish I hadn't. It just sends negative self talk throughout my brain..."I'm fat, I'm disgusting, I'm gross, I shouldn't look like this, I'm a hippo, I am so ugly...." I can't help but think these things because I went from being skinny and pretty attractive ( I wasn't the prettiest girl in the world, but I was confident and liked how I looked).....to looking like this. The change is so drastic. I don't expect to look like I did before I ever began taking steorids. I was honestly too thin and if you can believe it I had problems gaining weight. I wish that was my problem now. I was so active, always playing sports and running, doing yoga, mountain biking, hiking, etc. Working out was a great stress relief for me. Now, my body won't allow me to perform those intense work outs. I can't really work out at all. I can walk, but I don't consider that a real work out. I feel so incredibly POWERLESS right now. I have no control over so many things in my life and it is hard to come to terms with that. People say that it's just the medication and it's not me. Well that is almost more difficult to handle because if it were just me and the way I ate or something, I could change it. I could be proactive and do something about it. I really am powerless. I have no control over what is happening to my body. I know I have control over how I react to it all, and I am trying. Believe me I am. But the longer this persists without having a break, the more it wears on me. The human body can only take so much! I am staying strong and trying to hang in there.. Why can't I get a break?

I was thinking tonight....I have nothing to look forward to. I don't really enjoy anything. I don't go out to dinner, or bowling, or out to the bars. I don't go to parties, or concerts, or sports events. I don't have a significant other to share my love with or receive support from. I just want something to look forward to...something that I am excited about. I don't mean to sit here and ramble off things that I don't have. It is important to release these negative feelings so that they don't sit inside me and build. It is cathartic to express everything that is on my mind. I have this problem.....whenever I watch a movie or go out in public, I look at others and think.....I wonder what it is like to be them? I wonder what it is like to wake up every day and go to a job that you love, spend time with your own husband and kids, feel the exccitement of everyday successes. I wonder what other people suffer from...Do they take things for granted? Or do they appreciate everything they have in life. Do they appreciate their health? This may sound strange....or a bit crazy...but I am being completely honest here. I look at attractive girls and wonder what it is like to be pretty and get attention. Instead, I get stares because I look odd...The swelling causes different kind of weight gain. And the redistribution of fat makes my body look disproportionate.

The bottom line? I am pretty sure I speak for many of us with Behcet's (and those with other chronic illnesses) when I say that I wan tmy life back. I want my body back, I want my job back, I want my social life back. I want to wake up and not feel sick. I want my body back. I want to be married and start a family. I am not trying to be selfish. I just want things that healthy people have. I want to be me again. I know that the process of being me is ever changing and that the concept of who I am adjusts according to my life experiences. I guess I want to be the better version of myself. I feel like I have learned so much about life and about myself through the experience of being sick that when I get better, I will have an amazing outlook on life. I will be so happy at the smallest things. I will live in the moment. I will fight for what I believe in. I want to work as a psychologist and help kids and families. I want to help people who have chonic illnesses. I want to try new things ....I am finally getting tired so I will write again later. I appreciate each and every one of you who take the time to read this. Please omment and share what struggles you have overcome recently. I am praying for all of you who may be suffering from Behcet's or some other illness. You can get through this. Hang in there and TAKE GOOD CARE of yourselves!

Lets live like dragonfllies.....

mandi

Unable to sleep, as usual....

It's about 3:45am and I have been awake since 2am. I think I fell asleep around 11:45pm, woke up at 12:15 and again at 2. This sporadic sleep cycle is not one anyone can function effectively on! My sleep patterns are quite inconsistent. On a typical night I will get 2-3 hours of sleep at a time, wake up and read for a bit, and go back to sleep for 2-3 more hours, wake up again, etc. I could not honestly tell you the last time I had a full 6-8 hours of uninterrupted sleep. Pain is the main contributor to my inability to sleep consistently. I often have to wake up and am forced to deal with severe pain....It always seems that pain is worse during the night. Right now I have several mouth ulcers and the most painful of those are located in my throat. I have one large ulcer on the left side of the back of my throat and one large one on the right tonsil. I have always had them in my throat but never have I had one directly on my tonsil. It is extremely painful. It hurts just sitting here, but the pain is exacerbated by drinking, swallowing, talking, eating. It is so diffucult living with pain in your throat every day. To give those of you who don't have to deal with mouth ulcers an idea of what it feels like, imagine having strep throat every day. Now it doesn't always hurt that severely, but it does most of the time. To the point where if my throat doesn't hurt, which is extremely rare, it feels strange. Absence of pain actually feels awkward. I know that sounds silly, but it's so true. I am not sure if I am alone in this feeling, or if others with chronic pain can relate to this as well.

I have been sleeping a lot during the day the past few days. My energy has been completely depleted and I have had a great deal of fatigue. This means that even just walking around the house is exhausting. Regardless of the amount of sleep I get I still feel tired. Living with Behcet's, or any chronic illness, obviously forces one to deal with pain. However, the fatigue is something that others without a chronic illness may not completely understand. It's so difficult to wake up in the morning exhausted. Some people feel refreshed upon waking, ready to face the day with ferocity and vigor and energy. I wake up feeling like I ran a marathon in my sleep (whatever sleep I do get). During the time I was experiencing symptoms but remained undiagnosed, I always wondered why others could get out of bed immediately after the alarm clock sounded....While I repeatedly hit snooze because I didn't feel well enough to get up. I knew it wasn't because I was lazy, I wasn't. I was in graduate school getting straight A's. In addition to a full course load I was working part time internship and studying and working at a restaurant most nights until 1am. I knew it wasn't normal to wake up every day feeling like crap.

Once I was diagnosed, I immediately received some peace of mind because everything I was experiencing was validated. I had a reason, a medical reason for why I was feeling the way I was feeling. Of course I wasn't happy to receive a diagnosis but with the diagnosis of Behcet's Disease came the realization that every symptom was not in my head....Everything fit.

I still struggle every day with looking back and thinking about the "before I got sick ME." I know I have written about this in the past but it is a constant struggle. The before and after thinking is common among individuals who suffer from chronic illnesses. Especially when there is such a drastic change in my ability to function adequately. I am currently unable to work, which is difficult in and of itself because my career as a doctor of clinical psychology defined me. The field of psychology totally consumed me. Helping kids and families was my purpose in life, and it was also my passion. To have that all ripped out from underneath me has been one of the hardest things I deal with because of this disease. I was so active and was social and exercised and worked hard. Now, I feel like a child at times since I am unable to work and take care of myself fully. It feels awful to have to rely on others for so much. You don't realize it until you are in that position. I look forward to a day when I can work again, even if it's just part time. When I can go out with friends and engage in a more active lifestyle. I don't expect to be "cured" and have everything go back to the way it was. I have changed as a person. I don't think I will ever go back to being the person I was. The lessons I have learned along the way have been extremely beneficial. I have learned so much about who I am as a person and what I am capable of dealing with. I am much stronger than I ever thought was possible. I just want to be able to have some semblance of a normal life. I know I won't ever be healthy all the time. But I wish I could go thorough periods of remission.

I guess I will try and go back to sleep....I have no idea why I sleep better during the day, but I do. I can sleep for hours without waking up. More than I am capable of at night. I know I need to try and switch that around...Trust me, I try every day. Thanks for reading. I hope those of you suffering from any illness are feeling okay and I hope you have a wonderful week.

Bad few days...But have made new friends!

So I have had a really tough past few days. I am still on Prednisone, and although I am on a tapering dose (have recently tapered down to 10mg), I am still suffering from very bad adverse affects from the medication. I have been experiencing extremely painful heartburn that will happen so quickly. I am talking it will go from not being there at all to being super painful in about five seconds. In addition to heartburn, increased heart rate and bp and anxiety have been occuring quite frequently. Usually this is resolved by taking Xanax. And the worst side effect of all: WEIGHT GAIN!!!!! I have gained 20lbs in the past couple weeks since being discharged from the hospital. I am embarassed to report that this brings my total weight gain from steroids to 100lbs. I cannot believe it. It literally feels as though someone took another person and glued it on me. When you are on steroids, the weight gain is strange. The fat redistributes itself on your body...the most common places include abdomen, arms, neck, underarms, and face. The "moon face" is the worst. My face is so swollen that I can feel how puffy my cheeks are and I can see my cheeks from my eyes just by looking straight, not even looking down. Looking down I can see them for sure...If this makes sense.

I know it may sound superficial to focus on my external appearance, but it is so difficult to look like someone that is not me. I no longer recognize myself. When I walk by a mirror, I either look away immediately or my mind is suddenly flooded with negative self talk....Thoughts like "I am so fat, disgusting, ugly, I don't look right, I look like a hippo, I am so gross..." run through my brain. Since our thoughts are closely linked to our emotions (and subsequently, our behaviors), I then become angry, depressed, frustrated, and sometimes start to cry. I literally have no idea who is looking back at me in the mirror. I cannot express how that feels. When I had my normal body, I had a six pack flat stomach, I was thin and in shape, I was tan, and I felt pretty. I wasn't the hottest girl in the world, but I was happy with how I looked and I was confident with myself. Society places such great importance on our looks, even though some people like to think this is not true. I don't necessarily care how others view me but I am more concerned with how I think and feel about myself. And right now, I don't feel very good about myself.

So needless to say, the last few days have been so hard trying to cope with the significant weight loss and its subsequent affect on my self esteem. Not to mention that it feels so uncomfortable that it makes it difficult to breathe. I have been taking a dieuretic for the past week and finally it has paid off. I just lost 3 lbs. And I have been drinking a ton of water, despite how badly it hurts my mouth and throat, to try to flush out the excess water weight and toxins. I feel a little better, so that is good.

Today I went to my pain management doctor to get refills of my pain medications. That is an hour trip to Chicago each way. I did not feel well at all. My mom always drives me to these appointments, thank God, because it's too much for me when I am so sick. The mouth sores are increasing in size and number, so that was causing a great deal of pain. In addition to that I had a migraine and my right calf was hurting. That was worrying me because two years ago I had a blood clot in my left lower leg, in the calf area. That prompted me to start Cumadin and when I had a bone marrow biopsy done by a hematologist, they determined that I test positive for Factor V Liden....meaning that I am genetically predisposed to blood clots and have to remain on Cumadin forever. The pain in my right leg was not exactly the same as when I had the clot in the left leg, and there was no swelling. Yet I was still very concerned. Also I was having pain on the left side of the very lower area of my ribs. I was very fatigued and felt just a general malaise, as I often do. So not fun to travel when you are dealing with all this.

When I went to my primary care physician this afternoon he attributed my calf pain to tendonitis (which I already have in like four areas of my body) and muscle pain. Thank goodness. And my rib pain is costochondritis, which I have often as well. I have some stretches to do for my calf and he suggested putting heat on it.

I want to report some really good news! Since I have been writing this blog, I have been connecting with others who are suffering from Behcet's Disease. I never imagined that I would meet others that know exactly what I am going through....but it has happened! :) I have been talking to a few people, one girl pretty regularly. I posted her story the other day, her name is Kristi. Her and I have so much in common in terms of what we have experienced in our journey. It has been so amazing to have someone to talk to who understands and can validate what I am going through. It is very therapeutic to have her to talk to. I also have been talking with her mother, Sherry. Sherry and I have spoken twice on the phone and she is absolutely amazing. She is so incredibly sweet and caring and it's been so helpful to hear her perspective. She cares so much about her daughter Kristi and it helps me realize what my mom has been going through hearing Sherry talk about her hurt while having to watch Kristi go through all of this. I also had my mom and Sherry talk and I feel that they can build a bond and support one another because as much as no one understands what Kristi and I (and others with Behcet's) are going through, it is also difficult for people to comprehend exactly what our mothers are going through.

So despite the difficulties that the past few days have brought, I feel blessed and lucky to have these new people in my life. I told my mom tonight that I felt as though we were living in a bubble before because we had no one to talk to who was also dealing with this disease. Now I feel like we have popped that bubble and are moving forward by creating relationships with these wonderful people. I know that God has put us in contact for a reason, and I am so thankful. Thank you to Kristi and Sherry for your support. I appreciate it. And I am always thinking about you! I hope that I continue to find individuals with this disease.....not that I want anyone to have it, but I want to be able to connect with more and more people so we can support one another! Gonna try and get a good night's sleep....Take good care, all!

Isolation

I don't know if people really comprehend how isolating it is living with a chronic illness. When you cannot immerse yourself in work, social activities, personal life, etc. it is extremely difficult and taxing. The stress created from the inability to engage in these normal activities exacerbates symptoms thus creating a viscious cycle. I am alone all day long because my mom is at work. I sometimes talk on the phone, but basically I am alone with my thoughts. That can be dangerous as you can start thinking negatively and can quickly head into a downward spiral. Negative thoughts can be very detrimental to our psychological health. Since our mind and body are interconnected, our thoughts affect our emotions and behaviors. Our thoughts can also influence our physical health. Many people cannot handle being alone as it is, but add a chronic illness into the mix and it is even more difficult. It is scary, too. I never know if something is going to happen where I need to go to the hospital. I remember in December when I was taking Imuran and it caused acute pancreatitis.....I went into the kitchen around 7am....My mom was getting ready for work. I felt a slight pain in my abdomen directly under my ribcage right in the middle of my stomach area. It kind of felt like I pulled a muscle. I went back to bed. I woke up two hours later and was in EXCRUTIATING pain. I had no idea what was going on. I immediately called my doctor and he told me to take a liquid antacid and if that didn't help to call him right back. I was unable to go to the store to get the medication myself because I literally was paralyzed from the pain. It was the worst pain I have ever felt in my entire life. It was extremely uncomfotable as well, feeling as though I had a bowling ball in my stomach. My mom left work and went to the drug store and brought the medication home. I was on the phone with my sister the entire time because I was so scared and the pain was so bad. She and I were trying to determine the cause of the pain. We thought maybe gas, but I know that gas pain would never be that severe. I have a pretty high pain tolerance so I would be surprised if gas pain hurt that bad. We thought it could be appendicitis or possibly gall stones. But we didn't know what to do. Thank God I had her on the phone with me to calm me down. I was screaming in pain. She knew something was severely wrong but didn't want me to worry. So she told me stories and tried to make me laugh. My mom came home and gave me the antacid. She told me to drink some water, sprite, eat a cracker, walk around. Nothing helped. In fact, it only got worse. I yelled to my mom to take me to the hospital. I couldn't get there fast enough. Driving in the car hurt so bad, every little bump in the road or turn caused horrible pain. When they wheeled me down the hall in the wheelchair, that caused severe pain as well. I remember screaming in pain and being hunched over. Everyone in the waiting room was staring at me, and I couldn't care less.

The doctors ran tests and determined that I had acute pancreatitis. I was admitted for a week. My point is you never know when something will happen that will necessitate immediate medical attention. Behcet's Disease is so unpredictable that one minute you could be okay, and the next something is happening and you need to go to the hospital. This causes extreme anxiety. It makes me avoid travelling at times and doing things that I would otherwise not be afraid to do. It is a real concern too, not something that is made up. I am sure that others with chronic diseases can relate to this.

How do you all deal with the isolation caused by chronic illness? Even if you have a husband or a boyfriend or family, do you still find that you can be socially withdrawan or isolated? What do you think causes this isolation? I think that the mere fact that others cannot relate to my experiences can cause isolation. Also, it can be uncomfortable being around people when you don't feel well. You don't want to talk if you don't feel well. For me, my mouth sores can be so painful that talking is out of the question. It is hard to hang out with friends and just not talk. Therefore it is easier and more comfortable to just be alone. Please share your experiences with isolation with us! I want to know what you do to decrease feelings of isolation. Let's talk about this....it's an important topic that should be addressed!

Self Care

In my doctoral training for Clinical Psychology, we were taught the importance of self care. Not only to help our patients achieve a healthy level of self care, but to make sure that we incorporated these skills into our own lives. Everyone needs to take care of themselves physically, mentally/emotionally/psychologically, medically, etc. Individuals who are dealing with a chronic medical condiiton require a higher level of self care than individuals who are considered healthy. In order to cope with the daily struggles that chronic illnesses cause, we need to pay attention to our needs (continuously assess them) and apply techniques in order to meet those needs.

For instance, it does not need to be stated that the first priority lies in taking care of our physical health. This consists of regular doctors appointments, procedures and tests, treatments, etc. Eating a balanced diet and taking vitamins or other supplements that may enhance our health is also important. Exercise is important, however it is often difficult for those of us with chronic illnesses to engage in regular exercise regimens. I know for me I cannot participate in the activities I was able to do with ease prior to having Behcet's. I used to ride 20 miles on my mountain bike a day, hike up mountains, run 5 miles/day, go to yoga classes. I am lucky now if I can take my doggy for a walk around the block. My physical health has deteriorated so much that even the smallest amount of physical exertion can cause me to be out of breath and exhausted. It is quite frustrating to not be able to work out like I used to. But I do what I can and I tell myself that I have to assess where my body is at daily. If I am capable of walking, I do so. If not, I try and just move around as much as possible.

Equally important to taking care of ourselves physically is making sure that our psychological and emotional well being is addressed. Since I am a psychologist, I am a huge advocate for mental health. I see a therapist....not regularly, but when I feel that I need to speak with a therapist who is able to help me. That's called booster sessions. Some people may benefit from speaking with a therapist on a regular basis (tyhpically once per week). It can be extremely hepful in coping with the issues that go along with having a chronic illness. Chronic pain, especially, can be extremely emotionally taxing. There are so many psychological issues that can arise from chronic illnesses......for instance, feeling inadequate or useless, feelings of hopelessness, body image issues, depression, anxiety, social isolation, losing interest in things you previously enjoyed (which is a symptom of depression), feeling like you are not good enough and comparing yourself to others (feelings of inadequacy), among many others. Each individual has his or her own issues that are specific to his or her illness. But there are certain aspects of living with a chronic illness that are similar. That is why it is important for us all to connect with one another. The relationships that we form are important in that it will allow us to feel heard. Isolation, although a normal part of dealing with chronic illnesses, is not healthy and can lead to more maladaptive functioning.

I am currently unable to work due to the severity of my illness, but others may have to work even though they are sick every day. That can exacerbate the stress put on the individual and can increase the likelihood that symptoms will be more and more frequent. It is even more important for this person to take time out from each day and do something just for him/ her. Take a bath, read a book, relax and watch tv, spend time with a loved one, go see a movie with friends, get a massage, get a pedicure, talk with someone on the phone, meditate, do yoga, take dog for a walk....these are just some examples of things you can do to take care of yourself. You MUST make time for yourself daily. Even if it's 15 minutes. One of my favorite professors in graduate school always said "you must pencil yourself in in your planner." I always laughed at this way of putting it, but it's totally true!

If you have any ideas of self care that work for you, please comment and share them with us!

KRISTI'S STORY

I have been in close contact with a wonderful woman named Kristi. She and I have been emailing for the past month or so and it has been so great to speak with her about this awful disease. I really feel very honored to share her story with you. She has been through some very scary medical issues and despite wanting to give up, has kept going. Kristi takes care of her husband and children, works full time to get the insurance for the family, all the while dealing with everything Behcet's has to throw at her. Her story is full of inspiration and words of wisdom. Here is Kristi's Story:

 

 

 

My Behcets "story" began when I was a young and healthy 29 year old mom of 2. I had recently been through a divorce and had moved back to my hometown with my 2 small children who were 2 and 4 at the time. I was very active and energetic....fit and fun :) I exercised to the tune of 7 miles a day on my bicycle, combined with aerobics as well. One day, as I got on my bike to ride, I noticed that my heart was racing, I couldn't count it and I felt extremely dizzy...I was unable to ride that day...I also noticed that I was experiencing pitting edema ( swelling) in my legs and I had some weight gain ( very rapid weight gain,more than 20 pounds in a very few weeks despite a healthy diet and exercise). I am a nurse and was working on a very busy medical surgical unit of our local hospital...I went in for my typical weekend shift and just felt bad. I hooked myself up to on of the heart monitors and my heart rate was 165. My PCP happened to be at the hospital that day and immediately sent me to the ER. They were fearful I might have a pulmonary embolism as my oxygen levels were also low. In the ER they gave me IV medication to lower my heart rate as well as IV diuretics to help me get rid of some fluid. The diagnosis was "Fluid overload." A few days later the same scenario repeated itself. This time my MD admitted me to the hospital with a diagnosis of High Output Heart Failure. How in the world could a healthy 29 year old be in HEART FAILURE??? It just made no sense at all. I was transported to a larger hospital for a cardiac catherization. The good news was, my heart looked ok, it was just beating way too fast...the bad news was...they lacerated my femoral artery during the procedure resulting in a massive retroperitoneal bleed ( I bled out into my abdomen and back) which was excruciatingly painful and resulted in my losing about 2/3 of my total blood volume and got me a 5 day hospital stay. It took me literally months to recover from that and I can honestly say, I haven't been the same, physically, since then. Over the next days, weeks, and months I would develop more and more strange symptoms. I was convinced they were all related but I couldn't seem to convince my team of physicians. I was told I had "Inappropraite Sinus Tachycardia" which I do have, but that didn't explain all my other symptoms....I had chronic excruciating leg pains, I developed chronic mouth ulcers....they were severe and often I would have too many to count...I had a period that I had sores in my mouth every single day for over 2 years. I wouldn't go anywhere without my lidocaine to keep my mouth numb. I developed Raynouds phenomenon in my feet and hands. I had joint pain and swelling...even getting off the bed in the mornings and putting my feet on the floor was painful and would cause me to limp. I was short of breath. I was tired all the time....so fatigued. I had such difficulty working....and taking care of my children....and just basically doing anything. I was on so many different medicines for a condition no one could name. Some of my doctors tried to convince me it was all in my head. I had one physician tell me I had fibromyalgia and he gave me an antianxiety medication without even examining me or running one single lab test. I visited more specialists than I can even name, desperate for an answer to no avail. But I knew my body...this was not something I "made up" or could "talk myself out of." This was very, very real and had become a life altering nightmare for me. As far as lab abnormalities...it seemed like something was always out of whack but never enough things to make a clear picture. My Sed Rate stayed elevated as did my CRP and my white count. My potassium was often out of whack. Finally, after years of trying to find an answer, I just gave up. I stopped every single medication I was taking and gave up. I thought " I still feel awful even on all these meds so I may as well stop them and let the chips fall where they may." I did go through a period which I now realize was a remission...I felt really good but it didn't last long....the symptoms started back with a vengeance...I had so much pain I often couldn't even bear to walk more than a few feet. It was crazy!!! I felt like maybe I was crazy! About this time I met my now husband. Between him and my parents, they talked me into aggressively trying to find an answer once again. I had a new primary care physician by this point and he was convinced I had an autoimmune disease. My search for answers led me to Duke University Medical Center and their awesome Rheumatology department. I found a wonderful doctor who sat down with me and read every single symptom I had ( by this point I had starting documenting all the strange syptoms and had written them down) and went through every single page of my gigantic medical record and guess what??? She did not dismiss me as crazy....she listened to me...and more importantly she believed me. She assured me we would get to the bottom of it and find an answer. After a plethora of labtests and visits to other specialists ( gastroenterology, neurology, and cardiology) she sat down with me and told my husband and myself that she felt I had a disease called Behcets or at least an offset of it. She told us there may never be one definitive test that said " this is 100% what you have" but at some point you had to start treating the symptoms and try to improve the quality of life. I started with Prednisone and Colchicine. Within just a few weeks of those 2 medications, my mouth ulcers COMPLETELY resolved. This alone was a miracle to me. The joint pain and pain in my legs decreased. Shortly after that I started an immune suppressant called Imuran. This was not an easy decision for me. There can be serious long term side effects from this medication. But I decided that I had suffered for almost 7 years and I was determined to do everything I could to regain some quality of life back. In the beginning the Imuran seemed to work. I was feeling the best I had in years!!! But then I got sick...really sick. My gallbladder went bad on me and it seemed to throw me into a flare. I was hospitalized to have it removed and to recover. I guess being immune suppressed made the recovery difficult. Incidentally, while the surgeon was removing my gallbladder, he did a liver biopsy as well because my liver enzymes were so elevated...they were trying to figure out if the Imuran was causing that or my gallbladder....the results came back that I had what called non caceating granulomas...which is indicative of autoiummune diseases and inflammatory issues...just another clue in my mystery....it also led my rheumatologist to question if maybe I had some form of sarcoidosis...another autoimmune disease....regardless the treatment would be the same. Since then I have struggled with more joint issues in my back and hip requiring epidural injections....I also have started developing some neurological symptoms which include dizziness, difficulty with coordination and balance,as well as hand tremors. I think these symptoms scare me the most....I had an MRI of my brain which showed some small spots of basically the same thing that is in my liver....this is something that will have to be followed closely with repeat MRI"s...my rheumatologist assures me that the treatment would still be the same even if the neuro symptoms are from the Behcets. In case anyone is curious, the medications I take are... Imuran twice a day, I stopped the colchicine as the MD's thought maybe that med was causing the neuro symptoms ( it wasn't), Prednisone 8 mgs daily ( we are in the process of trying to slowly wean me off of this medication), Atenolol for my fast heart rate ( even with the med it still runs over 100), Nexium for all the GI issues, Cymbalta ( this is supposed to help with joint pain, it also helps me cope better with the disease), Tramadol ( this is an anti inflammatory that I take as needed), Phenergan ( this is for nausea which I experience alot of), I occasionally have to take Lasix ( for fluid overload) and Potassium. I also take alot of Calcium because of the prednisone and the effects it has on the bones.I occasionally have to take pain medications for the back/hip issues and I also have TENS unit for my back...this seems to help alot with the muscle spasms.

Looking back over the last 7 years, I still don't know if the heart failure was a symptom of my disease or the trigger for my disease....I know that my life changed dramatically in what seemed like an instant. It's a hard thing to be told you have a chronic disease...the feelings are so hard to explain. As a mom, I worry about my future and what that means for my children. I work and I carry the health insurance...I worry what will happen if I am unable to work? What will my family do? I worry that the rest of my life will be spent not feeling well....that is a heavy burden to bear. You know that you have to keep going on for your children and family but there have been many, many dark days that I have questioned if life is even worth it? I think this is something alot of people with illnesses feel but are too afraid to express. The reality of this disease is this: It is hard. It isn't pretty. It hurts. It sucks. But it's my reality and my responsibilty to figure out how to cope. I continually have to repeat to myself that there are SO many people that are SO much worse off than me. I do have so much to be thankful for. I have a supportive husband and family....that alone is a blessing. I think what I want people to take from my story is twofold. If you have an illness and have difficulty finding answers or finding a physician that will listen to you...keep going. Keep searching...you alone know your body the best. Keep at it until you find the right fit. You ahve to be your own advocate. Be aggressive. Be firm. The other thing is this....if you are healthy...if you wake up in the morning with no pain, no sores in your mouth, if you wake up and feel good...just thank God. So many people take their normal everyday lives for granted not realizing that there are so many people...people you know and just don't realize, that don't have that luxury....we wake up every single day and struggle. Don't take your good health for granted...it is a rare gift.

Behcet's Stories

I have been blessed to have met some very important people as a result of starting this blog.....Others who are suffering from Behcet's Disease! This is amazing as I have never had any real contact with individuals with this disease. I had met a few in the past from the American Behcet's Disease Association webpage, but those people I only had contact with a few times.

I feel these individuals have such important stories to tell....and I want to share them with you!!! The more we hear from others that experience similar medical issues, the more validating it is for us. Plus, I hope to create sort of a virtual support group....a close knit group of individuals who are suffering from Behcet's that can share with one another, laugh, and keep one another going.

Deep Breathing Techniques

Throughout graduate school I studied Clinical Psychology. One of the best parts of this was the process I went through to increase my self awareness. In addition, I was able to learn different techniques that I can utilize to help cope with Behcet's Disease. One of the most beneficial techniques I learned was self hypnosis and all the other strategies that encompass this. I am sure most of you have heard of deep breathing techniques and the benefits of this. Deep breathing is often utilized in yoga and meditation, but can also be used anytime to assist with a variety of issues. It is a technique that is rooted in and has ties to Buddhist principle because it brings the focus to your breath and allows you to be present and live in the moment.

When I use deep breathing, I start by getting in a comfortable position, which is typically lying down. I make sure that I feel good in my positioning. I start by breathing normally for a minute or two. It is important that you create an environment that is conducive to relaxation. This means turning off the television and eliminating all potential distractions such as telephones, people interrupting, dogs barking, etc. However, should something interrupt you it is okay because we must learn to adapt in a world where distractions are inevitable. But in order for you to benefit from this technique fully, you should immerse yourself in a quiet and comfortable environment.

Close your eyes and visualize a place that is a safe and happy and relaxing place. Many people think of a beach, a quiet place outdoors, a favoite place they remember from a vacation. Wherever you want. Picture this in your mind. Or just simply try and clear your mind of all your stressors and just BE. Like I mentioned earlier, start by breathing normally. Begin to pay attention to your breath. Breath in slowly and exhale slowly. After about a minute or two, when you feel ready, start to slow your breathing. How you are able to breathe deeply depends on many factors so you have to do what's best for you. Especially if you have respiratory problems or asthma or something, you may not be able to breathe exactly as I suggest...That's okay. Do what you are capable of.

I usually start by inhaling slowly, counting to ten or more....I hold my breath for about two or three counts, and then start exhaling very slowly....also counting to ten. Repeat this process over and over. You may find it difficult to do at first, especially if you aren't used to it. Thoughts may intrude....should this happen, simply acknowledge the thought and let it drift away. Try and not give in to continue thinking about whatever it is. This, like many things, takes practice, so don't get frustrated if you find that you don't get it right away. If you are just starting out trying this, do it for a few minutes. But you may find that you like it so much that you can do it for longer. It can sometimes bring about a little high because the breathing will allow oxygen to travel to your brain. If you pay attention to the way you breath normally throughout the day, you may find that it is rather shallow and quick. Deep breathing is essential for relaxing and for optimum healthy functioning. When you are done, don't just jump up and continue about your day. Take some time to open your eyes slowly and reacquaint yourself with your environment. Deep breathing promotes relaxation and can induce a meditative state so you want to take a few moments and pay attention to what's going on in your body. When you feel ready, then you may get up and start to engage in your normal activity.

 Sometimes you may need to do this for a small break in the day if you are stressed out. Even performing deep breathing techniques for a minute or two can be extremely effective in helping you cope with stressors. If you research deep breathing techniques you can see how beneficial it can be for so many differrent things. Continued use of this technique can reduce stress, can assist in reduction of pain, can help with blood pressures reduction, can increase a feeling of well being, can help with focusing on a particular task, etc. The benefits are endless!

I have been using deep breathing techniques mainly to get through periods of excrutiating pain. There is a reason that women utilize breathing techniques during labor. It WORKS! Focusing on your breathing can distract you from the pain and allows you to focus on your breath. It sounds so simple but it works! In this world we are always on the go. Taking moments out of your busy day to just be and to focus on your breathing can make a world of difference over time. The past and the future is often what we focus on, but there is only the here and now. Deep breathing can help you start to experience living in the moment.

I plan on using this blog also as platform to share and discuss different techniques that I know from my experiences as a doctor of clinical psychology. I think that I have a unique perspective in that I have my doctorate and also have to cope with a serious chronic medical condition. Therefore, I can share the techniques I know that work....And I know they work firsthand because I use them myself! If you have any ideas for me as far as techniques that you want to learn more about please let me know. I will be uploading a recording of a guided imagery tape that I made for my dissertation. The story is called "The Metaphor of the Tree," and was created by Teresa Robles. I recorded the reading of the story and used it in an experiment in order to determine the subjective effects it had on graduate students. It can be used to help you relax and you can incorporate deep breathing techniques while listening to the story.

Take good care, I hope this helps! If you have any questions, don't hesitate to post a comment. If you have something more private you want to discuss, please email me directly at mandifessler@gmail.com.
As always, thanks for reading!
Mandi

National Rare Disease Day

February 28th is National Rare Disease Awareness Day.....It is a day to recognize those who suffer from rare diseases. It is difficult for anyone to cope with any medical illness or mental health issue. RARE diseases add an entirely new level of complexity because these diseases are so uncommon. This means that not many people have the disease, numerous doctors may be unaware of the disease and how to treat it, and people in general don't understand because they do not know about the disease. It is so important for people to educate themselves about rare diseases. You never know when you or someone you know may be affected by one of these rare diseases. I feel that one of my duties to myself and others who suffer from rare diseases is to use my voice and spread awareness of Behcet's Disease. I think that everyone should advocate for their disease and increase awareness and information about these medical problems. Promoting awareness helps in so many important ways. For instance, those who may have strange symptoms and who have visited numerous doctors for years (like I did, and like so many others) may hear about a disease that may explain their symptoms. It can assist in diagnosis as well as treatment of these diseases. Treatment methods can expand with increased information and clincial trials can be started. Research will advance the study of effectiveness of treatments, the potential etiology (cause) of these diseases, and more.

Just want you all to take a moment and recognize February 28th!

Thanks!

Mandi

February Update

As the clock struck midnight on January 1, 2103, I imagined that this year would be filled with recovery, health, and happiness. Unfortunately, I have been in the hospital numerous times since the start of the new year.

Approximately three weeks to a month ago, I was in the midst of a horrible flare up. I got a mouth ulcer on the roof of my mouth that was about 3cm in length. It nearly covered the entire roof of my mouth. The pain was unbearable. Eating and drinking water was nearly impossible. Talking was difficult and others found it difficult to understand me. Waking up in the middle of the night and the first swallow was excrutiating. I was hospitalized in Edward here in Naperville for four days. I was treated with four days of IV antibiotics (40mg) and pain medications. Typically this would be enough to decrease the ulcers and effectively treat the flare up. Despite the steroids I continued to worsen. I woke up at 2am one night and was in so much pain. Something told me to look at the ulcer in the mirror. I was shocked to see that it was covered in blood. I woke my mother, and she didn't know what to do either. In 8 years of having these mouth ulcers I had never had this happen. I took some medications and drank some water and managed to fall back to sleep. I awoke in the morning and texted a picture of the bleeding ulcer to my rheumatologist. She immediately responded, stating that I needed to admit myself into the hospital. Since I had already gone to Edward, I was instructed to go to UIC because this would allow my rheumatologist to have direct control over my care.

I really REALLY did not want to go. I don't cry often but I burst into tears. I am so sick of going to the hospital. I feel better and comfortable when I am at home in my own environment. My doctor was very concerned with the bleeding and also with the fact that the ulcer was so deep that it was reaching the bone. She wanted to prevent the bone from eroding. Should the sore become infected and spread to the bone, this would create serious implications. The infection can then spread further throughout my body and possibly into my brain. I was terrified. My mother and I drove to my sister's house in DesPlanes and she drove us into the city. I was immediately uncomfortable at this hospital. I hate being that far away from home and in a place where I had never been. I was first treated in the Emergency Room. The doctors and nurses were so nice. I had a team of three residents who discussed my case with me and they informed me they would be my team for the duration of my stay. They had read about Behcet's before but had never seen it in a patient, so they were eager to learn about it. Whenever I go to a teaching hospital such as UIC, it is amazing how many doctors come to see me because they are interested in such a rare disease. I can sometimes have as many as 20 doctors simultaneously examining me and asking me questions about my symptoms and the treatments I have tried.

My mom and sister stayed with me until I was about ready to be admitted. As soon as I got settled in my room I burst into tears. Things were not going well. They would not give me pain meds through the IV, which is always a necessity when I am in the hospital. Swallowing pills makes things worse because it scrapes the sore and prevents it from healing. I fought with the resident on duty. She was not one of my many doctors that were on my treatment team. Since it was about 10pm, many doctors were not around. She informed me that she didn't have any orders for IV pain medications. I was so frustrated because the oral medications would not adequately control my pain. I told her she could contact my doctor, and she told me that I could call her. She proceeded to stand at the bottom of my bed with her arms crossed while I called my doctor. She didn't answer and so I texted her. About an hour later, my doctor texted me back asking who this resident was because she needed to speak wtih her ASAP. She was livid. She asked me to give her cell number to the doctor and have the doctor on call contact her. In addition to not receiving pain meds, I was not getting the medications that I take daily at home. This was rediculous. I had written my at home meds down for the nurse, and told another nurse my med list, and also informed the doctors what my meds were. There must have been orders for my medications because they had given me my Cumadin, but nothing else. Also they gave me IV steroids and fluids. It was so confusing and frustrating. This doctor on call said she was not at liberty to give orders for pain meds because she isn't aware of my history. Then her responsibility is to contact my doctor to receive orders. Plus, her having me call my doctor in front of her was extremely unprofessional. I could have been calling anyone as far as she was concerned. My doctor was not happy with that either. Long story short....She never ended up contact my doctor. She gave me one dose of IV pain meds, which would only last two hours. My doctor ended up calling me and asked what was going on. I told her that the doctor on call stated there was nothing she could do until morning. My doctor stated...."Yes, she can. Her job is to control your pain. You have a hole in your mouth!" She was incredibly angry.

The doctor on call finally came back in and asked if I had ever been on a PCA before. I had. A PCA is a device that administers pain medications intravenously. So for me, every ten minutes I could push a button and it would admister a dose of pain meds. This is convenient because it does not require me to wait for a nurse to bring pain medications and I can make sure that my pain is adequately controlled. It was strange because she could not give orders for pain meds to be given every two hours but then she went ahead and ordered a PCA? It was so contradictory. At least I was starting to get some relief from the pain. At this point it was midnight, and for about five hours I was fighting with doctors and nurses, calling my doctor and my mom, crying intermittently....I should have been resting comfortably, but instead, I was having to take control of my treatment.

I was wondering what another patient would have gone through if they had this happen. I am always very aware of what medications I need and what my treatment should be. I am educated and having lived with this disease for so long I am the expert on my condition. I had to advocate for myself in order to get what I needed. If you are not an active participang in your own treatment you may find that you do not get what you need. I was proud of myself because I used to be the type of person that would just sit and not want to ruffle feathers. I would say that everything was fine and just wait until things were sorted out. However the experiences of living with this disease has taught me that at times I have to be the one to speak up and state my needs.

I had asked for Xanax because the high doses of steroids were causing severe anxiety, heart palpitations and anger. The steroids in combination with the stress of the situation was seriously causing a panic attack. The nurse would not give me Xanax because it was not "ordered." The nurses and doctors all told me that I could have any of my at home meds, and this is one of them. Yet they denied it to me. I managed to do some deep breathing and calm myself down and get a couple of hours of sleep. I wanted to go home so badly. My mother was so angry and felt helpless because she was at home. She was ready to pick me up the next day and sign me out and take me to Edward. However, if I sign the form that releases me AMA (against medical advice), then my insurance would not pay for the treatment. I was stuck there. I felt like I was in prison.

The next morning, things started getting a little better. I was still in such pain and was feeling awful, but at least the doctors that were on my team started making sure I received the medications I needed. I was getting 40mg of IV steroids every 6 hours. I went into the hospital on Saturday, so at this point it was Sunday. I started talking with the woman who shared a room with me. We actually talked a lot throughout my time there, which helped. You never know who you may be placed with. In the past I have had some interesting roommates. That's why I prefer Edward Hospital, because you get a private room. I read a few books to pass the time. I talked on the phone a lot to get support. I was so lonely and wanted to go home so badly but I knew that I needed treatment in order to feel better. So I sucked it up and dealt with it. There was not much I could do about it. It was difficult. I hate being in the hospital so often.

I finally started feeling tons better and the ulcers were steadily improving. By Monday morning I was informed that I could be discharged that afternoon. I was so excited. I couldn't wait to get out of there. The steroids were making me feel so much better. I had tons of energy and my pain had decreased immensly. My mom and sister picked me up and then I was able to go home.

I was so SO HAPPY to be back home with Bella and Chase (dog and cat) and my mom. It had been such a difficult couple of weeks with being in the ER for one day, a four day stay at Edward, and then another three days in UIC. Upon coming home I was able to drink water and eating was easier. By Wednesday and Thursday the sores were gone! I couldn't believe it! I felt perfect! It has been probably at least six months to a year since I had a day like that.

It makes me wonder what it would be like to feel this good all the time....or even half the time. I had forgotten what it was like to feel normal....to feel healthy. To feel no pain and have energy and everything. Words cannot express how amazing it felt! But it is also bitter sweet, because in the back of my mind I wonder when the shoe will drop...When will the sores resume? How long will I get to feel that good? Sure enough, now the sores started coming back.....Even on steroids! It's quite frustrating. I just have to take it one day at a time. I am thankful for the time that I do have that is pain free, or even just reduced pain. I have a good attitude and that is something that I can control!! I know this sounds bad, but I hear people complaining about the silliest things. And it makes me so angry inside because I know what I have to deal with every day, and to hear someone complain about something so small frustrates me. I wish these people could live a week in my shoes to see what it is like to deal with a chronic illness. It is so difficult. There are stressors constantly at play, interfering with my ability to function normally from day to day.

I know this was a long post...If you have made it this long, thanks for reading! It has been a rough few weeks. I am now starting a new medication called Cellcept, which is an immunosuppressant medication that is typically given to individuals who have had organ transplants. I hope that it works! It can cause weight loss, which I HOPE that it does....I have been continuously gaining weight from the steorids. I know it will go away but it makes it harder to deal with things because I feel so ugly and fat. Like many other medical issues, Behcet's Disease affects me on many levels...much more than just physically/medically. The emotional and psychological components are  quite difficult to handle. That is what makes social support an integral part of treatment. Having people in my life who take the time to listen and understand what my life is like is something that I need terribly. Without this, life is isolating, lonely, scary. I retreat into a dark place where I am alone and feel like I am facing things on my own.

I am thankful for my mother, my siblings, my father, and my friends who have been so supportive throughout this difficult time. Thank you for listening and for your thoughts and prayers. It means so much to me that you think about me and what I am going through. Please let me know how reading these posts have affected you. I am interested in knowing if it helps you in any way to understand what chronic illness is like and how it can change one's life forever.

Take good care!
Mandi

Thoughts from the hospital

So I have been in the hospital for two days. I am so bored!!! In the past few months I have had numerous people mention that they don't know how I do it. How I stay strong and continue to have a positive outlook despite the myriad challenges I am faced with on a constant basis. My typical response is "I have no idea!" But really, I adopt the notion that I don't really have a choice. What I mean by that is my only choice, in my mind, is to attack this disease head on with all the positivity I have inside me in order to persevere. We all have difficult life experiences and we are unable to control what happens to us. What we CAN control is our reaction to each event. We can make a conscious effort to react utilize our strengths and adopting a positive perspective. This doesn't mean I am positive all the time, nor am I promoting this. It is impossible to stay positive ALL the time. We are humnan. There are definitely times when I become disheartened, irritated, bitter at the world becasue I am forced to deal with this disease. I feel so incredibly lost because the "me" that I used to be is aligned with the "me" that I want to be. Therefore, there is a strong disconnect between the me I am now and the me I strive to be. Therein lies the problem. It is impossible for any of us (whether we are struggling with Behcet's, another medical condition, mental health issues, etc) to not change as a result of the disease that plagues us. Life changes us. It has been difficult for me to not only accept thesse changes that I have to make to myself and my identity, but also a challenge to alter my life accordingly.

I have heard from a few people from all over the world within the past day and let me tell you I am ecstatic about it!!! One of my main goals for starting this blog was to make connections with others who are struggling with Behcet's, as I have never spoken or met another individual with it. It is difficult to discuss what is going on with others who don't really understand. As much as they try, it is so hard for them to imagine what it is like unless they have been in our situation. Therefore, I thank those of you who have read the posts and commented and/or emailed me directly. I think we should all stay in contact. I am thinking of starting some type of group Facebook page just for us, or some kind of chat room, group chat, etc. That way we can provide support for one another. The social support we receive from those who know EXACTLY what we are going through proves invaluable. It will help us cope on a daily basis knowing that we can call one another and talk openly about what's going on without filtering. I know many of you have agreed with me on this fact: having to hide our true feelings about being sad, in pain, etc. because we don't want others to worry about us. We are trying to stay strong for others, when really we need to stay strong for ourselves. Many of you whom I have been in contact with have significant others, families, etc. I struggle because I don't have a significant other, and this is something I have wanted since I was in college. It is so difficult to date with a chronic illness. I have heard others state that it is almost like we have to introduce our disease like it is a separate person.

I really want to keep the lines of communication open so that we can support one another!! I want to utilize this blog as a home base of sort to interact, ask for help from others, help answer one another's questions, etc. I think it will boost our spirits to have our feelings validated. Too often our families, in trying to help us, try to make us happy and cheer up. We need to give ourselves permission to express our negative emotions. It is unhealthy to repress them or deny them because the feelings tend to build up. Finding adaptive ways of coping is extremely important to our level of functioning. In order for us to strive to be the best person we can be, we need to adopt healthy coping skills. I will discuss this in detail in another post.

I feel like I have a very unique and helpful viewpoint since I have my doctorate in Clinical Psychology and I am also dealing with Behcet's Disease. I know a great deal about human thoughts, behaviors, and emotions and how these three facets are intertwined. I would love to offer psychoeducation through some of these posts.....meaning topics related to mental health that relate to dealing with a chronic illness. Examples include anxiety and fears that stem from our diseases, coping skills, expressing emotions in a healthy manner, communicating with others in a healthy way, setting appropriate boundries, dealing with depression, finding our new identites, etc. I would love to hear your thoughts/ideas for potential topics. If you have an idea, please contact me directly at my email address: mandifessler@gmail.com. Or, post a comment to this blog post and we move forward from there. I love hearing your stories and I have found that most of us have had similar experiences. I look forward to hearing your ideas and getting to know all of you more. If you feel comfortable, please introduce yourself to those who are reading the blog and share a little bit about yourself (only whatever you feel comfortable sharing.) Plese don't hesitate to contact me if you want or need to chat, need some advice, or need someone to just listen. I don't mind skyping or contacting you via phone.

I am looking to get into motivational speaking. If any of you have any places that you think having me as a guest speaker would be beneficial please let me know. I am also in the process of starting a book about living with Behcet's Disease. I am thinking of using your stories in the book, with your permission of course. We can also discuss that further, should you be interested in becoming a part of that.

Thanks for reading! I hope you all are feeling okay and are somewhat happy!!!
I look forward to hearing from you soon.
Take good care,
Mandi :)

In the hospital.....AGAIN

I just got admitted into the hospital today. I have terrible mouth ulcers and they are super painful! I was in the ER Saturday to get a dose of IV steroids so that I could go home on oral steroids. Usually, this is effective in reducing the pain and decreasing inflammation and treating the ulcers. Unfortunately they kept getting worse. So here I am....In for a few days! I just got a few emails from people all over the world who suffer from Behcet's who have read this blog, so I am very excited to start connecting to those who understand exactly what it is like living with this horrible disease! I will write more, I have limited time on the internet...I will have to figure out why!

Hope everyone is having a great day.
Please leave comments as I will be bored in the hospital!

XO,
Mandi :)

I FEEL AMAZING!!!!!!

So I was in the hospital on Saturday night....My rheumatologist instructed me to go to the hospital for 3-4 days to get IV steroids, pain meds, and fluids in order to treat the severe apthous ulcer on the roof of my mouth. It is so large that it nearly covers the entire roof of my mouth! It is by far one of the worst ulcers I have had to date. The pain is unbelievable. Drinking water is limited, as is eating and talking. Even when not doing anything the pain is throbbing and burning.

In the hospital I was given 40mg of intravenous steroids and a bag of fluids, including pain medications to manage the severe pain I was experiencing. I was in the hospital until about 1am. The next morning, Sunday, I started feeling a little better. Although the ulcer is still there, and increasing in size, the pain is somewhat masked. Today I woke up with a severe migraine, a terrible cough, and dry mouth. The dry mouth and cough irritated my ulcer which in turn caused increased pain. I slept the majority of the day so that I didn't have to keep taking pain meds and to escape the pain. I was still very lethargic, exhausted, had a headache, and my throat hurt. However, the past two hours I have been feeling absolutely amazing!!! I am in very little pain, I have tons of energy (thanks to the steroids), and overall just feel what other people feel like when they are not sick. It is great to feel what other people feel. I just wish it happened more often! It is so strange to feel like this because I am used to feelign sick and in pain and fatigued all the time. I look at people on televiion, or just out in the world, wondering what it is like to not feel sick every single day.

I wish I could bottle up this feelin!!! I am so happy to feel this great. I can't get over it! Most people wouldn't understand how big of a deal this is for me. But to put things in perspective, this only happens about once every few months....if that! It is difficult, however, because I know that I coudl accomplish so much if I felt like this more often. I could get my career back and my social life and could become a productive member of society. I want to travel, find a man to spend my life with, do yoga again, start running again, the list is endless. It's quite disheartening to feel this good and knowing that it won't last. I do pray and hope that it will, but I know from numerous past experiences that it hasn't lasted.  I want to scream it from the rooftops: "I FEEL AMAZING!!!"

Times like this give me hope that my body is capable of healing....even if it is from the steroids and is not my own body repairing itself. I pray that my body can be able to heal on its own soon. I have been doing a lot of meditating and deep breathing to get through the pain. It has been working really well. I suggest this to anyone who may be experiencing stress of any sort. Sit in a comfortable position, or lie down. Inhale deeply through your nose with your mouth closed....s l o w l y.....Inhale to the count of ten or however long you can do it for. Then slowly exhale the breath through your mouth. Repeat ths for as long as you need. I often accompany deep breathing techniques with visualization. For example, I choose two colors: one color to symbolize negative energy (black, for instance) and another color to represent positive energy (Pink). Visualize the positive color on the inhale, and the negative color on the exhale. This allows the stress to be released through breathing. This can be a powerful technique that can be utilized in a variety of settings. It doesn't take very long, but the longer you do it the more effective it becomes. Deep breathing allows me to get through pain especially when my pain medications are not working that well. Focusing on one's breath provides a distraction from something negative, such as pain. It also allows you to be present in each moment. We are so caught up in our day to day lives that it is difficult to sit and take a break. But even taking a few minutes throughout the day to do some deep breathing can be extremely beneficial for a variety of reasons. Research this, it will corroborate the message I am trying to send.

I have been staying positive as much as possible. I have had a lot of people recently ask me:"How do you cope with the constant pain and the numerous diffirent medical issues you are facing?
 I respond by stating "I don't have a choice. I actually do have a choice, but by this I mean I chose to deal with it in a positive manner, because negativity will only serve to exacerbate my situation." I feel like it is best to have a plan than to sit and cry about something. That doesn't mean I don't cry. I do. But once I express my feelings I write a plan for whatever issues I am dealing with at the time. This allows me to focus on movoing forward and gives me direction.

As always, thank you for reading. Please leave a COMMENT, or a question. I would love for this blog to become more interactive. I want to hear your stories, your life experiences. How have you overcome challenges and obstacles that you have faced recently? What was it about you that allowed you to persevere? What did you do when you felt negative or thought that your situation would not improve?

Love and light,
Mandi

General Update and Dental Issues

So I have not been feeling very well...what else is new. Even though I am back on steroids, I am still symptomatic. And in addition to the normal symptoms I also have tons of side effects from the steroids. For instance, I have bad heart burn, anxiety, weight gain, and inability to control my body temperature all from Prednisone. The weight gain has been from being on steroids on and off for the past 7 years and is without a doubt the worst side effect of all. I don't even recognize myself anymore. I look into the mirror and the person peering back is a stranger to me. It is so difficult to not have control over the weight gain.

In addition to the significant flare up of oral apthous ulcers, which are extremely painful, I am now dealing with severe dental problems as a result of a medication called Actiq. Actiq is a fentanyl based pain mediation in the form of a lollipop. I have been taking this medication for approximately four years. Of course since the medication is slightly sweet, you assume there must be a little bit of sugar in it. However, there is no warning label/pamphlet regarding the high level of sugar that is in each actiq lollipop. When you take this, you hold it between your cheek and your back teeth. The sugar pretty much rots your teeth regardless of how much you brush and floss. Since there was no warning regarding the potential adverse affects of this medication on your dental health, I did not worry. I am now having to deal with the serious affects of Actiq on my teeth. I have a huge number of cavaties and have already had one of last teeth on the upper left extracted. Two of my teeeth have chipped at the gums, both bottom teeth on the right and left (very last molars). It is not typical decal that you would see in someone who eats a lot of sugar or has poor dental hygiene, which I do not. Instead of having cavities at the top of the tooth, the teeth are decaying from the bottom up....in other words, there is a gap between the gum and the tooth. This is causing EXTREME pain. I have been informed that I am in need of AT LEAST $10-12 K worth of dental work done in order to begin to correct the damage done by this medication. For the past year, I have been lucky to find a compounding pharmacy that makes Actiq for me sugar free, so I don't have to worry about future damage. But it is so difficult to have to deal with this issue on top of everything else that I am coping with. And knowing that it could have been prevented is extremely frustrating. I was informed that the pharmaceutical company that makes Actiq did have a sugar free version but took it off the market. That is rediculous to me. I have done extensive research and have found hundreds, if not thousands, have reported similar stories to mine. They all have severe dental issues resulted from Actiq. Some people have had all their teeth removed. And these are just the people who have reported it on online forums. This does not include the number of individuals suffering from the same problem who have NOT reported it.

I am normally not afraid of medical tests, dentists, doctors, etc. But due to the oral ulcers and the severe pain caused by them, I am terrified to go to the dentist today. I don't know how I am even going to get through the x rays because I am in so much pain. Not to mention the amount of pain I am in from the two affected teeth. The pain has spread into my jaw, ear, and head. I am currently on an antibiotic, as I was worried about potential infection so I contacted my dentist over the weekend. Anyway, I am very anxious because people with Behcet's have difficulty with dental visits because any slight trauma to the mouth (sharp instruments poking areas of the mouth) will cause a huge increase in mouth ulcers and flare up. Given that I am already in a bad flare up, I am scared that it will get so bad from the dentist visit that I will have to be hospitalized. I am trying to relax and calm myself down and have faith that I will get through this, because I know I always do. It just gets a little exhausting having to constantly deal with different medical issues. If it's not one thing, it's another.

I am awake in pain from my mouth ulcers, but mainly because of the excrutiating pain in my lower jaw. It is throbbing with pain. I am going to try and get some sleep, but I will keep you all updated on the dentist appointment. Not looking forward to the many dentist visits I will likely have in the near future. Nor do I know how we are going to finance these dental procedures. It is unfair that I have these costly procedures all because of the negligent individuals who make this medication.

As always, I am going to try and remain positive and hopeful. I know I can get through this. I have no choice but to get through it with as much optimism as possible. I will come out on the other side even stronger than I am now. If you are dealing with something difficult in your life, try to think about all the positive aspects, even if it seems there are not any positive aspects at all. There is always something good that can come from a situation. We do not have control over the events that happen to us in life, but we do have control over how we respond to these events. Therefore, we need to capitalize on the control we do have. Having a positive perspective can help us grow and become better individuals. It will also attract others. We know that positive people are easier to be around. I always say that positivity gains momentum and attracts other positive people. When we attract positive people and include them in our lives, they will in turn assist us in remaining optimistic when we are having a diffficult time. So keep your chin up, everyone! We can get through these challenges and persevere!

Thanks for reading.