Everything in life is a process. It is an ongoing journey that moves forward. Part of the process in dealing with a chronic illness is social interaction and relationships. Our relationships with family members, significant others, friends, etc. change as a result of our illnesses. Some people feel they can't do anything to help us, so they do nothing. They drift away. Others stay and do whatever they can. There are also those people who don't believe that we are sick all the time, they think we are faking it. They don't understand nor do they try to. There are many different types of reactions that people have to our illness. It doesn't just affect us, it affects those around us. For example, I know I have to cancel plans when I am unable to leave the house because I am so sick. This is hard for others to accept (not all people, but some). I don't want to cancel plans. Trust me, I would much rather be hanging out with friends or family than lying alone in bed sick. But people often attribute it to me being flaky. Which is untrue. There is a social psychology construct that refers to this very idea. Let's say that someone does something negative or performs poorly on something. That person is more likely to attribute the reason to something other than themselves. However, when something good happens, they attribute it to their own internal characteristics.
I have had some difficulties with interpersonal relationships. Friends and family do the best they can, but sometimes we (us individuals with chronic illnesses) need more than the average person. I have come across people who don't want to hear me "complain." Yet they can complain for hours about the cold they have. I am not trying to say that anyone who isn't feeling well isn't allowed to complain about it. But I am saying that it's not fair to tell me that I am complaining too much when I'm sick. I happen to be sick all the time. This is my life. My entire life for now and the past five or more years has been centered around this illness and trying to achieve remission. Others don't understand. They don't get how it's difficult for me to leave the house because I feel fat and ugly and utterly disgusting because of the severe weight gain from steroid medications. They don't know what it's like to look in the mirror and not recognize the reflection staring back. My entire body is unrecognizable.
I just wish people would take more time to try to understand what it is like to have to worry about your health every minute of every day. To fear what may come next. To know that one minute things could be relatively okay, and then five minutes later things change drastically and I am being rushed to the hospital. That's how quickly things can change. Behcet's Disease is especially unpredictable. To prove this point, the other night I was okay. Sure I was having some symptoms from the medication, but it was manageable. Within hours, the pain and the bleeding were severe enough to warrant a trip to the ER. If you are dealing with an illness, how have your relationships wtih others changed? What do you wish that others would do for you?
Hang in there, everyone. Let's stick together. At least we can support each other and we know what one antoher is going through. Please leave a comment stating what kinds of difficultie you have dealt with with any relationships in your life. Thanks!
Sunday, March 31, 2013
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.
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.
Sunday, March 17, 2013
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
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
Thursday, March 14, 2013
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
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
Monday, March 11, 2013
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.
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.
Monday, March 4, 2013
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!
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!
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