Sleepless

If someone told me that I would ever write a blog post at 2 in the morning, I would advise them to go see some shrink. First of all, why the hell would I be up at such an ungodly hour? Second of all, even if I was up so goddamn early, why on earth would I be attempting to produce a blog post? I mean my brain would probably be so exhausted that I couldn’t even compose a cohesive sentence!

Well believe it or not, I am doing exactly that. I have so many thoughts and emotions running through my mind, I thought it might be a good idea to get them all out through writing. Maybe after they’re purged from my mind, I will finally be able to return to my bed and get some shut-eye.

To understand the origin of all my emotions, we’re going to have to step back in time to Monday of last week. On that day, my parents and I all jumped into the car and headed straight to the children’s hospital. I had yet another appointment with the rheumatologist and I wasn’t looking forward to it one bit. You see, I have left many of his appointments feeling sick and still having no answers as to why my physical condition seems to be deteriorating. It started to make me feel like I was going absolutely nuts and that maybe I should just check myself into the nearest psych ward.

This appointment was a little different though. The rheumy acknowledged that I was feeling unwell and was quite shocked with my latest blood test results. They were all over the map and the rheumy believed I had some autoimmune condition. Unfortunately, he still had no clue as to what that condition may be. I am not exactly what you would call a clear-cut case. My complex medical history and my battle with anorexia obviously makes diagnosing me not some walk in the park. The good thing though about the appointment was that I felt like the rheumy really cared about my well being and was willing to guide me on my diagnosis journey.

Now fast forward 6 days later (that would be a Sunday) and you’ll find me laying in my bed barely able to move or eat. My face is as white as Wisconsin’s never-ending snow and whenever I use the bathroom, tons of watery stool are launched from my buttox into the toilet. Believe me, it is most definitely not a pretty sight!

I thought that maybe these symptoms all would pass by the next day, but they didn’t. If anything they got worse! My parents, beginning to worry, contacted the rheumy’s office and they decided to put me on 20mg of prednisone.

Yes you read that right – I have now been prescribed one of the most notorious drugs in the history of medicine. For those of you who are unfamiliar with prednisone, let me explain to you the side effects. This drug causes one’s insulin to skyrocket resulting in powerful cravings. Ultimately this leads to a drastic increase in calorie consumption which results in weight gain. This of course is my worst fear. The idea of having cravings and gaining weight uncontrollably just doesn’t sit well. I already hate ever square inch of my body. If I even just a few pounds more, I don’t even think I go out in public anymore……

I am so scared and I am so angry. Why is my body doing this to me? It isn’t fair!

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4 thoughts on “Sleepless

  1. I battle with the sleep demon every night and often take sleeping pills prescribed by the doctor to get me to sleep another side effect from ana sorry to here about the prednisolone I work at a doctor office so know all about the steroids and don’t think I could ever take them as weight gain is just the last thing in the world I want but the one thing all my family and friends are waiting to happen

    1. I am honestly considering not taking it. . . . . I know that my health will just worsen but I hate my body so much right now. I know I will hate my body even more if I suffer from fluid retention and weight gain due to the medicine. . . . I am considering lying to my parents about taking it. . .

  2. Dear little Claire,

    I have been reading your posts for months, but have never commented. About a year ago, I found out my daughter, then 13, had an eating disorder. I knew nothing about eating disorders ,and for the first few days, I did everything wrong. She had a very rough time of it. I started with a therapist, who insisted that she needed to be admitted to a psychiatric hospital. The place was horrible, and I knew I needed to get her out. I spent a lot of time that week on the internet educating myself, and though it turned into a battle, we managed to get her out in one week, and get her admitted to Children’s Hospital in Philadelphia, where they stabilized her medical condition. There, they treated her just like any other kid that was sick. Her parents could stay with her, she was not punished, and we got her healthy. I found your blog shortly after she was discharged.

    I started reading your blog, because it helped me to see things from her point of view. I needed to help her get healthy, but wanted to avoid hurting her, or making it worse, in any way I could. She was not able to communicate what she was feeling, and reading your blog has given me a glimpse of what she could be experiencing. You have no idea how much your honesty and intentional displaying of your innermost thoughts have helped me.

    Sometimes, when I read your posts, my heart aches for you. I pray for you often. I pray that you and your parents can get to the point where you can communicate your needs, and they can hear you. For example, I understand that it is important for you to have consistent meal times, that is one of the things that Children’s Hospital taught us. We try very hard to keep our daughter’s meal times on a schedule, and I can see the negative impact when we get off schedule.

    Also, I understand your need for physical activity. My daughter loves to dance. When she started treatment, we were advised to remove her from dance, but we fought against it. We compromised, by increasing her calories to compensate. She is much happier for it. We feel it is important to treat the whole child, not just the ‘weight’. Taking away the thing she loves the most just causes her to be depressed, so we made it happen.

    All of our daughter’s doctors are highly impressed with her recovery. She was very ill, but once she got to a place that had a good treatment program, she returned to a good weight quickly, and has maintained that weight. Her period has returned, she no longer tries to hurt herself, she has started growing again, all good things. I am not going to lie, she still struggles with thoughts, feelings and the lies that ‘Ed’ tells her, but she is so much healthier and happier.

    I agree with you in so many areas. Most people don’t understand that this is not something she is doing for attention, she does not want this, she did not ask for this, and she did not cause this. I treat her just like any other child who is sick. If a child gets an infection, they need antibiotics. They may not want them or like them, but they need them. I will not punish them for needing them, but they do have to take them. I will, however, try to make the situation as pleasant as possible, and love them through it as best as I can.

    To me, her eating disorder is the same. She is sick, and food is her medicine. I will not punish her, but she does have to take her ‘medicine’. I try to make it as pleasant as possible. I keep her meal times regular. I avoid foods I know she absolutely hates, but I do keep her diet as varied as possible. I use the same dishes so she gets used to what a portion looks like. If she is having a difficult time, I try to distract her from the fact that she is eating. I let her watch a movie, tell funny stories, play games, what ever gets her through it. And I try to motivate her, maybe telling her something like…hey lets watch that movie you wanted to see when we are finished, or when we are done eating we can do a craft, or how about a walk when you are through.

    You do a lot to educate yourself, and I am so proud of you for taking the time to learn more. I have learned a lot from reading your blog. I was very interested in your post concerning the connection between eating disorders and Celiac’s Disease. My five year old grandson just went through a procedure today, to determine if he has CD or not. We are waiting for the results, because I suspect he may have it. I also suspect that my daughter may have it, and possibly I may have it.

    Like you, I have been battling an undiagnosed illness, that has gone on for a few years. I suffer from pain, digestive issues,I have lost mobility, and getting out of bed on a daily basis is a struggle. I have been to so many doctors, I have lost count. None of the doctors I have seen have mentioned CD. My grandson began having trouble with his bowels, and his doctor wanted to test him for it. Like you, when medical things are mentioned, I turn to the internet, and research for myself. In trying to learn about something that might be wrong with him, I began to suspect if I had the same thing. My older daughter will meet with his doctor next Wednesday to find out if he has it or not. I will be going on that appointment with her. If he has it, I will be getting myself, and my daughter with the eating disorder tested.

    I am so sorry that some random person on the internet was ignorant enough to tell you that you are obese. I use the word ignorant for a reason. Most people use the word, but don’t really know what the word means. The word ignorant means lacking knowledge, or uneducated. That person was ignorant. They apparently lack knowledge, and don’t even know what the word obese means. You, my darling, are beautiful, and you are not obese. Now, when I tell my daughter she is beautiful, she denies it, but as time passes, she is not denying it as much. Want to know why? Because, I will not lie to my daughter, even if the truth hurts, and she knows this. Because I don’t lie to her in other situations, she is beginning to believe me on this. It just took some time for my voice to get louder than Ed’s. I hope one day, you also will believe me, because you ARE beautiful.

    One last thing…out of all of your posts that I have read over the months, why did I choose to respond to this one? Honestly, I was very concerned about something you said. As a mom, I beg you, please don’t lie to your parents, or your doctors. I understand you have concerns about the medicine. I am not trying to convince you to take it, or not take it. But, whatever decision you make, please don’t lie.

    My concern is this…you have an undiagnosed condition, that doctors are having a difficult time figuring out. If you take the meds, the doctors can factor in any future symptoms or reactions based upon the fact that you took the meds. If you refuse the meds, they can do the same thing. If you SAY you took the meds, but don’t actually take them, that could lead to misleading the doctors, and make it harder for them to diagnose you.

    For example, you mentioned being concerned about fluid retention. What happens if they THINK you took them, but you didn’t, and then your feet swell? Your doctor will assume it is from the medication, and not see it as a symptom. I know you are probably tired of people telling you what to do, and feel like you have little control over your life. At least, that’s the way my daughter feels, so I can only assume you have similar feelings.

    I hope you understand the point I was trying to make. As a fellow suffer of ‘mystery illness’, I would not want to do anything that would make my doctors job any harder. It took me three years to even find a doctor who believed me and didn’t treat me like a hypochondriac. I want to be as honest and specific as I can, so he can hopefully make a proper diagnosis, and I can get the right treatment, so I can have a better quality of life.

    I wish you lived closer to Philadelphia, because I truly believe that Children’s Hospital there does a great job helping people with eating disorders. The doctor there is named Rebecca Peebles, and she helped us so much understanding eating disorders. All the other places I looked into sounded like horror stories, much like the ‘treatment programs’ you have had to endure.

    I believe in you. I believe you will conquer ED, and go on to live a happy life. And when you feel like no one cares, and no one understands, remember…someone in Pennsylvania is praying for you…and because of you…is a better mom to their daughter. Hang in there darling.

    1. Dear Angela,
      As I read your comment, i felt tears well up in my eyes. Your words are so beautiful and kind. It honestly made my day.

      I am sorry to hear that your daughter has an eating disorder but I am happy that you discovered a treatment program that has rescued her from Ed and got her back to living the life she deserves. Children’s Hospital of Philadelphia sounds like quite a wonderful place for healing. Many eating disorder programs don’t treat patients with eating disorders like they would with any other physical ailment. In many places (including the place I was at), they rip patients of their parents, they punish sick children for their inability to eat, and many times they forbid patients from having any contact with the world outside. This makes treatment even more distressing not only for the patients, but also for their families.

      I am also really touched to hear that my blog has helped you see the world through the eyes of an individual with an eating disorder. Many people don’t understand the disease and unfortunately there is a stigma that sufferers choose to become anorexic, bulimic, binge eaters, or have EDNOS (Eating Disorder Not Otherwise Specificied). My parents had a hard time accepted the diagnosis. They didn’t understand why I couldn’t just eat or see that my body was starting to give up. Though they understood my anorexia was a serious mental illness, they couldn’t wrap their minds around how I could be starving myself so and to be honest – neither could I.

      As for the medication, I am beginning to reconsider my choice of refusing taking it all together. Your comment made me realize that by lying about taking the predisone, I am just making my medical a lot harder to solve than it already is. Though I am absolutely mortified to take it, I only have to take it for two weeks and my doctor only put me on 2omg. I have meant people who have had to take much more so maybe I won’t have as severe side effects.

      Again THANK YOU SO MUCH FOR YOUR KIND WORDS!
      Claire Klaisner

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