Hello? Police? I'm reporting an attempted murder: my body

I was ready to have this thing beat. While you could say it was well expected knowing what I know about other cushies, I still was not prepared to be told I'm sicker. I've already had people telling me not to take it like a death sentence, but how can I act like this is just another bump in the road? Hypothyroidism will probably not go away. I've given so many things up in order to get better and all I do is get worse. My adrenal gland is faltering and I may not be in any immediate danger, but people don't realize that these diseases kill. Look up adrenal insufficieny, look up myxedema. Call me insensitive or ignorant, but I can think of a million other diseases I'd rather have. Nobody understands what I got. How many hours have I spent trying to explain it to my teachers or my classmates? The Dean of Students said if I were to fail this semester I would have adequate leverage to appeal. That may be all well and good but I'd rather not be facing that prospect. Am I ever going to graduate? Am I doomed to never overcome such a simple task? I want to get out of here. I want to live my life already. No more doctors or medications or surgeries. Although, I am pretty frustrated that now I have to go through more tests and precautions just to get my gallbladder out. The lady in the Dean's office had asked me if I wanted to take a semester off. No! I don't want to take any more time away from school. What am I going to be 30 when I get that diploma? If I ever get that diploma. Levothyroxine is my new drug and I was told to be very strict in taking it. Will I get insomnia, more hunger pains? A lot of my organs are duking it out right now so I can't imagine I won't have to deal with something. Just not the jitters, please. I had this dream last night where I was in class and the teacher said I was going to wear a tiara while the rest of the class did something else. I found that notion very patronizing. The princess who just sits there doing nothing. I'm not a princess, I'm an independent woman (or I sure want to be at this point). Did I mention all the sleeping I'm doing? At first, I wanted to sleep so much because I just seemed happier when I was dreaming. That was before I knew why I was tired and I started missing classes a lot. I don't usually agree with the phrase "ignorance is bliss" yet the rabbit hole deepens. I'm also tired of my mother in particular acting like every time I show a negative emotion there must be something wrong with me. I get it. She worries. The fact that she's mentioned multiple times that I took my guinea pig's death too hard is unfair. I care a lot about the animals and people I know. Yes, I took it hard. She had seizures in my arms. She was hypoglycemic. I can relate to that. It was like watching myself die or a family member. It was a very human disease and I was too distracted by my own sickness until the near end. When the week is over, I might be taking the new one to that specialist. He's sneezing and I don't like it. My clothes are baggy, my hair seems brittle again and I'm sweating. It's too hot or it's mostly too cold. The only thing that's not happening is weight gain. I'm 117lbs, my friends. I am a princess when it comes to me wanting some decent clothes. It's debatable what really fits me in my wardrobe. I can barely even think about Christmas. This may be the first year I don't buy any gifts. I already feel sick after that first dose. I have to take it on an empty stomach. Period. Otherwise it doesn't work, apparently.  Oh yeah, my Cortisol is low again. It was 3.3, so that might be making me feel worse along with the rest. You may be seeing more frequent posts from me as I am clearly not a happy camper!

The vacant sound of loneliness and grief is all that remains

I am completely devastated by what happened to my guinea pig. She was very rambunctious for the last few weeks and I can't help but feel like she was trying to warn me and I didn't listen to her. She supposedly came down with such a bad case of pneumonia that she stopped eating and practically became a lifeless doll. I've barely slept since Thursday night when I noticed how quiet she was. I took her out of her cage and put her on my bed and she suddenly fell over; flailing. I immediately thought to myself, "she's dying!" I cradled her on my chest like I always do and started sobbing. She was only 3 years old and she seemed fine just a day or so ago. I petted her and all I heard was a soft wheezing. Usually she makes a more contented sound. Then she appeared to have a seizure! I thought back to my dystonic reaction. The poor thing! She wasn't interested in treats, but surprisingly drank a bunch of water when I brought the bottle over to her. I didn't know what to do. It was late. What could I do? Watching her go so earnestly to that water bottle made me wonder if I shouldn't pronounce her dead. She hadn't lost interest in food or drink, she just was having a hard time getting it down for some reason. I called a veterinary clinic helpline and I got a doctor to call me back. He didn't specialize in guinea pigs and said he couldn't do much for me if I didn't bring her in. I said no at first, but soon realized if I didn't go, she might die before I could go to another one. So my roommate and I took her, although we didn't get any answers. She was a little underweight and had a low-grade fever. He gave her fluids and some antibiotics despite the fact that he didn't really think she had an infection. I hated seeing her in pain over this check-up, but he said I should give her 48 hours although it didn't look good. Oh, and she had a lump under her chin. Great, that sounded irreparable. I forgot to mention before I changed my mind about going, I also found mites in her cage (from the bedding!?) They were crawling around under it all so I never saw them in there! I had seen some of them in my room though. I asked if that could've made her sick and he said he didn't see any on her. I paid the bill and spent a few hours holding her. I very much expected to meet a dead version of her in the morning. The fluids had perked her up slightly. She made happier noises. At least she was more comfortable. I finally wrapped her up in a warm towel in her newly cleaned cage and begrudgingly went to bed. I woke only two hours later in subconscious worry I'm sure. I turned on the light. She immediately started squeaking. I was astounded! I gave her some more water and turned the light back off. Even when I got into bed she was making a lot of sounds. She really wanted my attention. I wanted to take her out, but I needed to sleep for class. I woke up a few hours later. I took her out and started calling around for appointments. I got one for late in the afternoon. She wouldn't eat anything I tried to give her, aside from an apple piece which she took a nibble from. She drank a bit more water. I noticed she was leaning her head to the side a lot, like she was seizing again. I figured I might be euthanizing her when I got told she was too far gone. I almost wondered if it was worth the stress on her. Maybe she should just stay here and I'll keep giving her the antibiotics. I never managed to get that in her mouth before the appointment. I wonder if I should've tried harder. I really didn't want to leave her, even for a one-hour class. I didn't want her to be alone, to die alone. I was afraid the moment I left, it'd be the end. I e-mailed my teacher. She told me to get an unexcused absence from the Dean's office. Fat chance. I called the office and asked if this counted as an emergency. Granted, I started crying, so I guess it'd be hard for her to say no. A little later we were off to another appointment. She was really starting to position herself weird; she kept arching her head backwards. I was surprised when the more qualified vet said she didn't have a lump. He stuck a scope down her poor throat forever. He decided it was pneumonia and an inner ear infection. That's why she couldn't balance herself! He told me she might be okay depending on how the next day or so went. He gave her more fluids and Vitamin C. I became more positive. I wish I hadn't. When I got back, I let her rest in her cage. I wanted to early vote and was a little less reluctant about leaving her alone, so I did for about an hour. I wanted her to get some rest and my roommate was there. Well, when I got back, I came across a bit of a scene. She was no longer wrapped in her towel and was laying the other direction convulsing! My heart sunk. I felt horrible for leaving. I promptly brought her with me into the bathroom and got in the shower with her. The steam was supposed to help her sinuses. Meanwhile, my clothes got soaking wet. I couldn't tell if it was helping her. I handed her to my roommate while I found dry clothes. I was beside myself. She no longer could sit up much at all and looked very rattled by it. I laid down with her and just tried to relax her. My mom called me and said how she could hear her. "That's a good sign", she says, although she only really made them when I tried to prop her up better because she flailed her legs in confusion. My mom told me to wrap her up so she'd feel safer. She was shaking or jerking every few minutes. I don't really know what was going through my mind then. I may have started crying again. I thought about giving her her next dose of medicine that was supposed to have a good flavoring. I wondered if she'd choke because she was so disoriented. I petted her and she rolled her eyes up to look at me. She looked so confused and yet transfixed on me; her owner. She was really attached to me and it felt like she was fighting to stay alive every minute. Maybe we should've just kept laying there. I don't know. It was more calming, overall. I left her a moment and turned on the shower in the other bathroom. Then we went to sit in there and soak up more steam. Well, all this getting up just frazzled her more I guess. I thought we'd sit in the fully steamed room and maybe she would be able to breathe again. I have no idea if she was breathing well or not. It was hard to tell. As I was adjusting the towel around her so we could cuddle on the floor against the bathtub, she appeared to have another seizure. White puss appeared from her eyes like they'd been doing on occasion and then she went limp. All I could do was call her name in the form of a desperate question. The sobering moment when I realized her heart had stopped beating. It seemed too sudden and unreal and cruel. I should've been stroking her softly if she was going to die in my arms, not go limp in my fumbling hands with a stroke. I feel like I somehow let her down even though I tried very hard to help her. The only question that remains for me is whether or not she had mites, too, although they were too big? Larva? I've been bit at least once. Anyway, she went from getting better to dead within hours. Whereas before, I had accepted the reality of this, after going through all that with her I felt a deep sense of loss. I became even more attached to her as I watched her be so defiant towards nature. Nuzzling up to my neck when she could barely move functionally. She never seemed to want to spend downtime in her cage. She just wanted to be with me. I'd like to think she forgave me since I finally realized what was wrong. Looking back, all the signs were there months ago at my parent's home. Months ago when I had wanted to take her to a vet because she was having messy bowel movements. I didn't have money or a way there and I knew my parents would find it unnecessary. I gave her less treats and it cleared up. Then it was back to school. There isn't a very close vet nor are they cheap. I could afford what I did this week thanks to financial aid paying my tuition in full. I have been crying for most of the night. I know she loved me and I loved her but how did it come to this? Now all I have is an empty room. I'll never hear her squeaks and say, "Bye, baby" and "Hi, baby" ever again to her. I keep thinking she's in there and I can still hear her squeaks in my mind. Every time something moves, I assume it's the pet that's always been here. She was the sweetest guinea pig I've ever met and I had really thought she'd live longer on my watch. She's been with me almost my whole time in Eau Claire. I feel like she took a large part of me with her. I can't get over what a little fighter she was, which is why I fought so hard to get her better even if it cost me debt. I want her here so much.

To everybody who is voting in Wisconsin especially: please read this! Whether you agree or not in the end, just read it!!!

As someone who has been through plenty of ordeals with the medical community, I was compelled to write this for an alternative newspaper on campus. The political race is tightening in Wisconsin and I'm registered here to vote for the first time ever. My treatment here has been very lax and frankly ignorant at times in comparison to what I've experienced in Minnesota; my home State (it pains me a little that I won't be able to vote no on proposition 9 there that will deny gay rights if passed). Anyway, I don't expect people to be swayed to change their vote just by reading this but I want them to know what I know. You might be surprised to discover what it's like to be sick and that you must fight for insurance. I am currently awaiting the decision by my health providers for an extension on "temporary disability" so my parents don't have to pay expensive premiums to keep me on their plan. I am 26. I met Biden and I believe in the Obama platform. Thank you for reading!

Obamacare: More than just a policy

                Disease. It can strike at any time regardless of a person's age or financial situation. Also, you don’t have to look sick to be sick. I have learned this time and time again by watching my own family suffer through various ailments. My little sister has an incurable autoimmune disorder called Hypogammaglobulinemia. Beginning as early as her years as a toddler, my sister had to be driven frequently to the emergency room by my mom, due to high fevers. At the same time, my sister's twin has been diagnosed with Autism, bipolar disorder, and schizophrenia over the years. Do you know what it’s like to wake up to your sister screaming bloody murder and have no way to comfort her? Suffice to say there has never been a lack of medical bills or stress in our home, yet it used to be manageable. My dad used to have a decent job and we were all covered by a family health plan. Despite our best efforts, the rub remained that the more we grew up, our ailments and debt grew with us.

               Following the trend of most Americans, we went to college, worked over the summers, and took out student loans. I planned just as so many others working toward their degrees at this university do, to graduate after four years. Then, the unexpected happened. I became ill myself. For clarification, I didn’t wake up one day and realize I had a rare underlying illness that would cost my family loads of cash and destroy my ability to do much of anything. In a slow and cruel process, my body and mind deteriorated over the years. What began with "mild Depression”, fatigue, forgetfulness, and insomnia, eventually catapulted my condition into a scenario entailing a loss of both enrollment and employment, while my body gained in pounds. My family made jokes about “chipmunk cheeks” and a “beer belly” at first. On the inside I was reeling. I no longer resembled or felt like myself and couldn't understand why. I wasn't even aware of the full extent of what was happening to me, as my muscles were silently wearing away and my blood pressure skyrocketed.

                It turns out I had Cushing’s Syndrome, which was brought on from an adrenal gland tumor. The tumor was over-secreting Cortisol, a hormone controlling a person's sleep patterns and stress levels. As a result all of the nutrients I ate were stored as fat, instead of rejuvenating my body. My diurnal clock began to run on a Chinese time zone and the other adrenal gland started to shrink; my immune system was on the fritz. By the time we learned of it all, I was already 25. Thankfully, President Barack Obama's Affordable Care Act, or more affectionately known as "Obamacare," had become law. The surgery my body required was rare, expensive, and performed by specialists who required a person to have some form of health insurance to even apply for it. I would have had to pay out-of-pocket, but since Obamacare allows a child to be covered under their parent's health plan until the age of 26, I received the operation I needed.

                Since the surgery that removed the infected gland, I've continued to rack up medical bills stemming from half a dozen trips to the emergency room due to anemia, fainting, vomiting, a severe prescription drug reaction, and other secondary complications. At those times, I was afraid the pain would never stop, but my fear of affording my bills far outweighs any of my nightmarish experiences. I have spent more on health care than school loans. I feel powerless in the face of the extreme debt I am putting my parents in. My dad, already 61 years-old, works overtime just to get by. With every chance I get to see him, I wonder if that rapidly aging face will ever get the chance to see retirement. From the time I was diagnosed, I continue to struggle finding my own employment. Going to all my classes is a struggle in and of itself.

                The current medical system and health care insurance industry have been frighteningly callous towards my family. I can’t believe someone my age would have to go through what I have in the United States of America. Because I am 26, I am now hanging onto the Affordable Care Act (Obamacare) by a thread with the mantra of “temporary disability” as my savior. This could be revoked at any time my insurance company decides I’m too much of a liability. One of the secondary complications from the Cushing's Syndrome has resulted in the crippling of my gallbladder, which means I am going to have an additional surgery to dispose of it. My disease even falls into the debate over whether birth control should be affordable and accessible;  with my body unable to maintain proper hormone levels, thankfully, Obamacare requires insurance corporations to provide coverage for birth control and other preventative health care services without being charged for additional co-pays and deductibles.

                I broke into tears of gratitude when I met Vice President Joe Biden last week. This election on November 6th means so much to me, as well as so many other students that are all too familiar with these issues. As far as I’m concerned, President Obama has made steps in the right direction. I'm utterly terrified of Mitt Romney, Paul Ryan, and Tommy Thompson's plan to transform Medicare into a voucher system that won't come close to covering the full costs of health care. This is the same health care my autistic sister, unable to work or live on her own, depends on just to stay functional and survive.

                Anyone with a pre-existing condition knows that letting a “free market” of corporate monoliths, prioritizing the need to turn a profit over the quality of a patient's health care, decide who's worth treating and who they should refuse care to will simply lead to an increase in patients needing treatment, while the cost of health care continues its ascent and rising health care premiums. I also don’t see why something such as health care, which is one of the basic rights every human being should have access to according to the United Nation's Declaration of Human Rights, should be an issue that's simply left up to individual states to decide on. We need to make it federal. We need to make it the law! I didn't write this because I want showers of praise for our struggles. I want change. Not the kind of back-handed, "shop around" change that Romney is proposing. I simply can’t. An insurmountable pile of medical bills shouldn't be a person's only option.

                Your vote isn’t about what’s in your pocketbook. It’s about what’s right for the country and your fellow American. We all get sick. It can happen anytime and anywhere. It doesn’t matter if you’re rich, poor, young, old, black, white, gay, straight, religious, or secular. Even as we strive to persevere, my family and I pay income taxes. Mitt Romney has recently doubled down on an arrogant assertion he made earlier this year, when he suggested 150 million Americans, or roughly half the nation, refuse to "take responsibility and care for their lives,""pay no income tax," and continues to generalize about "47%" of America as "dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them. My job is not to worry about those people." Are seniors, veterans, students, and the disabled unworthy of such elitist goods as quality health care? For clarification, I am not in dependence; I am in need of assistance. If Mitt Romney genuinely cared about me becoming a productive member of society capable of paying more in taxes, while consuming less in governmental services, he'd fight for me in a time when I needed his assistance.

                America has fallen behind the rest of the world in its ability to provide equal access to health security. Dreams are dying along with their dreamers, unable to afford their right to life. But...hope remains.  Since the passing of Obamacare less than two years ago, over three million young adults now have health insurance until the age of 26, a number that will continue to rise as the law's provisions are gradually implemented in different states. What may appear as abstract achievements featured on a graph, really serve to represent the immeasurable difference in the hearts of those who have been given some relief in a time of uncertainty and sacrifice. We don’t leave the sick and poor behind. We the people are not leeches. We are human beings and need a helping hand when push comes to shove. This is a challenge that simply fails to measure up to the richest nation in the world. When you or someone you love experiences a health crisis, your first thought doesn't have to be, “how are we going to pay for this?”

                Students have a choice this fall. You still have a choice. Vote.

The aftermath of going through hell: and so on...

Going through what I went through has left it's marks. Granted all things should heal in some time, but they are more than just annoying. I have huge canker sores from biting the sides of my cheeks. I literally bit holes in my mouth. The pain of biting down so much made me want to move my jaw to the side in the hopes of relieving the feeling, although all it really did was relocate the issue. I have oral anesthetic that I am applying constantly because they sting like hell especially when I eat. These are not small. I am still waking up awfully early after sleeping maybe 6 hours. The muscle stimulant is clearly still in my system to some degree. Obviously my muscles ache, too. One of the paramedics had said he feels real bad for people who have dystonic reactions because "they just can't relax". Every muscle was as stiff as a brick and now they feel about that heavy. For something that was supposed to help it sure did the polar opposite. Even though the ocean is a powerful beast, it felt good to be buoyant. It's the best relief I can get aside from a massage. I wish I could take a long vacation here. It's very relaxing to hang out with my relatives and I know stress is a killer but we live in such a stressful world. I have worked very hard to regain good standing in school even though I am still struggling physically. The best we've been able to do is "stabilize" me. We really haven't fixed anything. My appetite is starting to wane again as I knew it would. The best part about being here is I have more distractions. I can take photographs and explore new places without too much effort. I love the smell of the air. I have a really dry throat but that's yet another symptom I continually have already. In the back of my mind I wonder if Cushing's will come back. When I get hormonal, or use the bathroom a lot, can't sleep, or feel famished, it feels like it's coming back. Doctors act as though it couldn't possibly come back. I know better than to believe every word they say. Or I'm going to develop another endocrine problem (probably something autoimmune). I am basing these theories off of genetics and what I know from other people's stories. The most prominent idea being that my nerves are shot. As for California, I am enjoying showing some love to the horses at my aunt's ranch and her cat with the thyroid disorder. I am very akin to them in comparison to how I used to feel about horses especially. From a young age I've been scared to ride them because they are so bumpy. I am also less scared of chickens!

What do you suppose the chances are that this horse has Cushing's?

How many times can I go to the E.R. in one year?

Well, I had a lovely Sunday evening (the eve before my trip to California no less). I am in fact safe and sound at my aunt's house now but I had something called a dystonic reaction. This is much worse than any allergic reaction. I was wary of this drug from the start because SURPRISE! I am the one in a million who had a terrible not to mention horrifying experience with it. In a nutshell, it's muscle spasms. I think that makes it sound cute, however. This was traumatic. I had been feeling restless lately or as I call it severe "boredom". I figured if it was the least of my side effects, I'd take the good with the bad. On Sunday when I was eating out with my mother and sister, I felt claustrophobic. I went outside to sit in the car. The ride back to Minnesota seemed to take forever when it was only 2 hours. After my third dose during dinner, I started to notice my tongue was moving weird. I was lisping and felt like spitting ie drooling. This is when I started to think I'd have to stop the drug. Unfortunately, things went from bad to worse within an hour. I tried to relax my muscles by taking a bath. This is when I noticed my teeth were biting together by themselves. I got dressed. The  biting down problem progressed and that's when my mom suggested benadryl, which we had none of. I started to get upset because not only was it difficult to talk, biting down as hard as I was was starting to really hurt! She promptly called our clinic's help line. The doctor on call got back to us 10mins later. She said, yes, my mom should give me some benadryl. By now I was in a lot of pain. I kept biting down and I was grinding my teeth! My mom could hear it. I tried to bite my towel but it didn't do much good. While she ran to walgreens, I was pacing. I must've looked insane. Every minute felt like forever. I even called her after 5mins. I just couldn't take it. I was convalescing by then; shaking all over. And my jaw just kept chomping down as hard as it could. By the time I took the benadryl I was sobbing. I basically turned into a 5 year old. My mom was cradling me and rubbing my muscles but it wasn't getting better. I think it got worse. We were supposed to wait 1 hour according to that doctor. We made it 20mins before I just got hysterical. My head was arching backwards and then my throat seized up. I could breathe but it felt tight. My mom finally called 911. She was afraid to waste any more time even driving me to the hospital herself. I was screaming. I just wanted to be sedated. I just wanted it to stop. Within minutes, an ambulance was there. I could hear the sirens in the distance which was mildly comforting. I choked out a laugh about that. To think they were coming to help me specially. Of course I spent another agonizing few minutes talking to the paramedics and waiting for them to confirm what to do. I kept asking for my mom who was talking to the police officer outside of the ambulance. They confirmed an IV of benadryl was what I needed. A much MUCH bigger dosage than a few measly pills. That was also the most painful IV I have ever had. I was so tense. I could only talk by spitting out words between chomps. Anyway, I almost immediately felt relief. It was amazing. Those paramedics were my two most favorite people in the world at that moment. It was entirely true.

I tell this story not to scare people, but to reiterate the seriousness of what people with Cushing's, especially post-op, go through! You don't usually just get better. Look how much this stomach disorder has destroyed my quality of life. What solution do we have? I know in severe cases you can get a stomach pacemaker. I don't really want to go through that nor do I think I could afford it. I assume it's a special and costly procedure. We keep hoping it'll fix itself over time. This had to be one of the worst experiences of my life. Not being able to communicate is yet another huge fear of mine. Not to mention having no control over the pain I was inflicting on myself. I was so scared. Thank god my mom was there to explain thoroughly. We spent at least another 4 hours in the E.R. My poor blood pressure wouldn't go down so they finally gave me valium- a muscle relaxent/anti-anxiety med. Strangely enough, my ability to eat has been uncanny for the last two days. I asked my gastro specialist if valium helps and he said yes. This leads me and my mother to wonder if I have a nervous system disorder. I've been telling counselors for years that anti-anxiety meds might be beneficial for me. They would always say, "No, you seem to be showing signs of depression, not anxiety". It just goes right through their ears! My poor psyche is taking such a beating, too. I know it's pointless to think like this, but in weak moments I ask myself why this is happening to me. What did I do to deserve this? My poor parents watch me suffer and can't understand why someone as healthy as I was can now be so ill. A few years in college couldn't have done this to me. What's wrong with me? Now my endo wants to check my adrenal function some more for sure. He wants to check my adrenaline, my ACTH. I just had another MRI. No tumors. The gastroenterologist suggests I go on some sort of antibiotic- erythromycin I believe. This is common to take with gastroparesis but isn't known to be very effective and as far as we know I don't have any stomach infections. I'm allergic to a few antibiotics as it is. I'm now allergic to amoxicillin, ceclor, prednisone, and the evil drug reglan. Can we rack that list up, too? I'm not happy because doctors don't just hand out controlled substances frequently. They're supposed to be addicting but so far are the only types of things that seem to make a decent difference. Is it worth it to be on something like this? Can I be prescribed a weaker drug like it? The same goes for pain killers. Dilaudid may be a powerful drug, but for me it's just right. Maybe these things shouldn't be labeled by title but by a person's reaction. I mean, I am so fed up with the medical workers in my college town of Wisconsin as well. They clearly think I'm a hypochondriac or a drunk. And I'll never forget the paramedics that had no clue what my disease was! Lost all faith in them. Also when I broke my tailbone and they gave me oxycodone, not dilaudid. I felt sick every time I took that. They gave me morphine in the hospital but outside of it, they don't take my request seriously. As far as I'm concerned I'm allergic to vicodin and oxycodone, too. I've had it. Somebody needs to do something for me because I can't live like this forever. I shouldn't have to. Give me whatever works. That is the point I am reaching. Do not give me something with the worst possible side effects in the world. I am an unusual case, so take the goddamn hint!!! Please listen and do something helpful! I am not a guinea pig who is just here to intrigue you or blow off. I am a human being who is suffering more than you could ever know. It's no wonder I've been known to enjoy calming stimulants like cigarettes, alcohol, and even sleeping pills or allergy medicines. They relax me. It's called self-medication. And trust me I am not agitated by choice.  I attempt to calm myself all the time. Measured breathing, reading, baths, scented candles, soothing music, spending time in the sunlight, naps. I truly want to be calm and to feel better. I fear people will think I am anorexic soon. I weighed 120lbs when I checked at home. How much more can I lose before it's serious? I know my mom in particular is getting extremely worried. I can't imagine what others tend to think.

The good news: I'm in San Diego and a vacation is the best thing for me.......  BTW,

Another photo comparison because DAAAAAMN!!!

                WITH CUSHING'S                                            AFTER CUSHING'S

Slowly transforming you from the inside out, as they say

Can you believe I look close to no 1 again? I'm now at 124lbs, although I need to stop dropping the weight as I've said before. That drug they gave me seems to be helping aside from the fact that I think I'm having the "sleeping problems" side effect. It's by no means cured me of anything. One thing to note is while I get less sick, I am often hopelessly hungry anyway. The diet of cutting everything up and eating select foods has been fairly painless. I wanted to say something about Cushing's: it changes you from the inside and the out and it does it unknowingly for how many years? Hormones have been at me since I was13. An extra 50lbs may not sound like a lot, but it is. It also  just makes you sad all the time. I had thought it was a normal feeling- how sad is that? I've seen an occasional photo timeline for it, yet there's no way to measure the emotions. I've always wanted a way to describe it but I just can't. I remember never being able to know what I wanted to say or express myself aside from raw tears. It's a mental disability for sure although I couldn't give you hard documentation for it. As for looks my hair was falling out and I itched my scalp until it blistered over. I feel like it's a slew of ailments wrapped into one; a perfect Cushie sandwich. Some people assume it was a mild problem. If they were aware of all the various, intricate things I went through and my body went through, I'd hope they'd see there's nothing simple about it. Most of my Cushing's compardres go through remission periods. I was lucky it was on an organ I could just take out. Granted it messed up other organs in the process. When I discovered that gallstones are caused by rapid weight loss, genes, and women I kind of wanted to hit someone. RAPID WEIGHT LOSS! Hello? Remember me? Yet another thing people with this disease go through is the lack of post-op care. It's no wonder I have no clue what to expect. They don't even know much less pay attention. I know my endo takes notes, but I don't even know how many cases he's had in the past. He originally told me I might have to go to the Mayo for answers. I finally figured out why my liver enzymes were fluctuating, too. Gallstones do that when they travel through the system. Would've been nice if a doctor or nurse had explained such a concept to me. I thought my liver was scarring. I never did get to talk about my stomach scope experience. They didn't find anything, but "twilight" drugs are a joke. I remember that well. There are worse things. I made a quite a face when the specialist asked if I'd ever had a colonoscopy. No thank you, not today. I'm taking miralax and magnesium. I clearly need to add to that medication list I posted in April. I've added at least another 6. Oh, and while we're on the topic, Oxycodone makes me sick. I'm not a pill junkie, I just do better on dilaudid. I tell ya, no one listens to us cushie sickies... From what I know, pain tolerance is a big deal for us. Cortisol levels physically numbed us, after all.

And now SAILOR MOON SAYS! I did not get Cushing's from:

 

no exercise plan                               eating hamburgers

 

     sleeping too much                           not "watching my figure"

Also, this: (because it makes me like my boobs better)

Just offering a little perspective...

30 million people in the U.S. have rare diseases,

28 million have Cancer -rareproject.org

Are rare diseases really so rare?

If this is karma, I'd like to punch myself in the stomach!

Well, I am not feeling too good about my "recovery" lately. A cushie once said, "Cushing's is the gift that keeps on giving". Considering it's already caused or further exasperated two other problems in me, I'd have to agree. Why is there a picture of me eating cake? It's because I'm starting to think I'll never enjoy eating again. I have gastroparesis and from what I can tell, it's permanent. Of course, if we take my gallbladder out that might make it more manageable. And the only decent treatment for gastroparesis is medicine- medicine that has serious side effects. Just look up tardive dyskinesia and you'll see why I'm wary. It'd be fine if it wasn't usually irreversible. Anyway, this means my stomach muscles don't move at the speed they're supposed to. I get full right away and then sick(er). I've been a little frustrated by people who tell me to just exercise or try this diet. I know they mean well, but I already do these things! It's a tad more complex than I'm getting credit for and I am seeing another doctor who is much like a nutritionist (I would like to remind readers that I am poor and he is not covered by my insurance). I've strayed lately because I think my body is craving calories like you would not believe. I weigh 129 compared to 170 in January. I'm losing the weight faster than I put it on. From what I read about eating suggestions for this disease: eat small portions with lots of nutrition. My body is starving itself in the opposite way it did before. Soft things like liquids, cooked vegetables. Nothing with citrus like oranges or things that will exert your digestion like broccoli. In contrast to that, I have gallstones and "sludge" as they put it. The diet for that is quite a bit different. It's not an emergency, but there's more surgery in my future. I better hope my dad's company is nice enough to let me keep the insurance. Suffice to say, if I am to feel better, it's not going to be for a long time. Yes, it could be worse, but I am very MAD. I'm mad at the people and doctors who don't take me seriously.  I'm mad about what I've already went through and what little it has gotten me. Cushing's doesn't just get better and messes with everything. I like this gastroenterologist I'm seeing but I rolled my eyes at him when he said, "Oh I don't think it's your gallbladder" and that he thought Cushing's didn't do this. On the contrary, I communicate with other Cushing's patients and trust me, there are others with this gastroparesis condition or something like it. Gallstones run in my family. It is very possible for me to have both problems if not more! Look at my track record for rare diseases. C'mon here. I'm upset because I'm nowhere near unscathed. I knew this was possible. Why nobody else did is beyond me. I'm sick of being sick. I got my emotional control back, I got my brains back. I returned to the theater, though it nearly burnt me out. Now I'm going to force myself through another semester of school before I have surgery. Am I scared like I was last time? I don't know. I don't want to know, so I don't think about it. My sense of humor is low and I'm hungry. Let's just hope we don't add another tumor.

If I were to design a Cushing's fish tank...

Hey, ya'll. I've been busy studying and dealing with the return of pretty consistent nausea. I've begun to wonder if I'm always going to have to feel compromised health wise. Am I just going to have to give up anything that triggers heartburn and stomach cramps? I still barely eat. I try to and I just can't do more than half a sandwich. Reading, writing, even watching television can give me a headache along with general sickness now, too. I'm getting one as I type. Sleeping capabilities remain decent, although I can never sleep long enough. I bought benadryl, pepto bismal, aleve, and refilled my nausea medication. I shouldn't feel the need to buy these things. Most of them don't even work fully. In good news, I lost a few more pounds? 135, baby! Still don't like wearing a two-piece swimsuit or barring my legs. I finally bought a bra that fits. What an improvement that makes! I am starting to wonder if I'll ever lose the hanging flab despite weighing so much less. When I used to weigh 135, I didn't have a belly or pudgy hips. It's like I'm shrinking all in one area, which is mostly just making me feel disproportionate. Anyway, I like marine life and love watching the show Tanked. It's a show where they build customized tanks and are pretty much the coolest things I've ever seen. They often have a theme. I started wondering what a Cushing's themed tank could be like! I have no idea what kind of shape it could be (I don't know if they could shape it to look like an organ or something), but I started looking up fish that reminded me of my illness.

The Geometric Pgymy Hawkfish immediately caught my attention. It reminds me of red blood cells. Cushing's is about what flows in your veins- Cortisol being the main thing. According to Petco it is semi-aggressive and is relatively new to the industry. So is the rising number of Cushing's patients. It also reminds me of what happened to my skin. The red face, patchy/dry scalp, all the stretch marks that will never fully fade. This guy is a poster guppy for that!

Then there's the koran fish. I was trying to find a fish that looked like a zebra. There might be better candidates out there since it doesn't mesh with the other? Maybe a school of zebra looking fishies. What I found interesting about this fish is it changes appearance as it matures. That reminds me a lot of Cushing's. How we change, and hopefully, become more like ourselves again after treatment. And any Cushie knows that zebras are our mascot. We are not the typical horse. I am guessing something like a banded butterfly fish would be better. That one is all B&W and easier to care for.

This was suggested by the site I was looking at because it would get along with the hawkfish. I thought it looked like a white blood cell! My immune system acted like it was constantly fighting something when I had Cushing's. Before surgery I took antibiotics since I seemed to be getting a cold, but even when it was clear I'd beaten the sniffles, my white blood count was still high. It suggested snails, hermit crabs, or little green chromis, as well. They could be good in a group. I like the blue ones I saw more. That reminds me of the flowing blood inside our bodies, too.

When I saw the name of this one, I thought "too perfect!". It's a teardrop butterfly! Since I seem to be leaning towards a reef tank, I couldn't have him, but that is an adorable name and very Cushie. It would match the other butterfly fishes I want for a zebra feel. I wonder if there's another fish similar to him for a reef setting. Which is easier? Marine or reef tanks? Anyway, one of the worst parts about this disease was the constant emotional stress I felt. It was tear city 24/7.

The only aquarium I can afford is the one above and I did in fact buy it the other day! Even if I had a few thousand dollars to waste, I'd use it for some loan payments. Maybe I can build a cool aquarium someday. I also want a piano. It is a bit of a fun exercise either way!

Dear life lessons, I am 26 years old! You're confusing me!!!

I seem to be a little down this week. At least this is no longer considered a normal feeling for me. The weekend started off with me going overboard of course when I went out and then regretting it for the rest. I get so frustrated. I know I have to consider my choices differently, but I haven't been like this my whole life. I forget when I'm feeling decent especially. Getting a disease in your mid-20's is cruel in that respect. Becoming injured or ill is always cruel and I hate how people think I'm supposed to be better themselves, yet it's even more confusing for me psychologically at this age. I know everything about Cushing's and adrenal insufficiency like the back of my hand. I don't know how to cope with it sometimes. The other thing I continually seem to go through is a battle with my closet. When I fit into one shirt, I get excited and think I'm going to fit into ALL my clothes again. I get disappointed pretty quick when I realize there is maybe one or two items at best I can wear. To get back to my original point, I let my need for independence get in the way of me making the right choices. That's the only reason I can come up with for some of stupid things I do. I worked on a paper all day Monday. Yesterday I went to have a psyche evaluation done, since the school offered it to me. It wasn't really necessary, but I've never had one done. Why not? I admit I felt really sick by the end of it. I had to fill out this long questionnaire and it was giving me both a headache and stomachache. I conked out at home afterwards. I had a very unpleasant dream, too. It was one of those dreams where I woke up feeling crummy. I didn't exactly go to sleep cranky, but I suppose I felt sub-par at that point. It was dark the whole time and I felt very tired and disoriented. Anything good that happened in that dream was overshadowed by other things. There was something in particular about it that perplexed me. A prior experience I had in a relationship was played out. Even though it was a pleasant concept in general, my mind picked out the part of it that usually wasn't. Or rather, it was more for the other than for me. I woke up wondering why the scene was portrayed like that. I almost enjoyed it in the dream, though. I don't understand it in consciousness. Does it merely point out that I shouldn't lower my standards? Do I actually miss that? Or do I just miss the familiarity? I did spend some time explaining to the people yesterday that I often was lonely and have had to re-evaluate friendships. I don't know. It just surprised me. I was glad to wake up to sunlight. Now it's cloudy again. I still don't feel that great and can't seem to think of a good pick-me-upper. The upside is that my new roommate is definitely more compatible as a friend than prior ones. We watched a movie and I appreciate the company when she's not working. Here's to getting to the end of my week sooner than later! Maybe the next will be better.

My angry stomach, friendly grades, and a House episode!

I think I have been burdening my stomach too much. I honestly threw up something red the other night (blood?), but I'm hoping that's just a sign of something mild like an ulcer. I already know that can happen with Cushies in recovery. I read a case on it among other things. The problem is while homework has been taking up most of my time this summer so far, I still desire to socialize like a normal person. In fact, people are more than noticing that I've gotten smaller. The transition must be crazy to watch from an objective point of view. I don't know what to think about all the attention. That's not to say everybody is acting that way as I've already noted on numerous occasions. On another topic, I got the scare of my life this morning! I received an e-mail saying I was suspended from school and was super confused. I did more than what the Dean asked me to do. Turns out he just had to override it. The deal for me is to get adequate grades for two semesters- not one. When I told him about my wishes to go back to full-time status in the fall, he said if I did well in my summer classes I could! Also, he apparently talked to my English teacher about my situation and she said she'd prolong deadlines for me if needed. I'm actually taking a harder class than I was supposed to, but that's okay. Writing is something I excel at and I tend to crave challenges much to my body's chagrin obviously. Even though it's a lot of work, online is working out better for me. I can do my assignments at whatever time of day I want and don't have to leave the apartment usually. I do admit I haven't been sleeping right when I worry about getting everything in on time, however. I don't really understand my appetite at this point. I never know what to eat nor do I eat enough I'm sure. I should probably get more nausea medication, although my stomach now seems to hurt more in comparison to it being sour. Riding the bus is still awful because I have a tendency for car sickness that has clearly gotten worse in my current state. I bike usually if I have to go anywhere past the street I live on. I hate summer because the campus pool isn't open until mid-June! This is when I regret moving to a town with few lakes. I've floated down the river in the past, but it's a bit nerve-racking and not really exercise. Speaking of water, now that the boys moved out, I got to take a bath! The bathroom on my side is just a shower. A girl is moving in today and I think I snagged us some furniture from a friend. I'm looking forward to the transition and decorating. I enjoyed my few days of solitude, but it's a bit too empty. It's probably not safe for me to be alone so much either. Anyway, I'm not feeling too hot. I have a vocal rehearsal tonight and I desperately need a nap. I have to get that girl's key for her plus I should shower. Ugh... in Cushing's news, I finally watched that episode of House and it was genius. They even mention how it can cycle! While the emotional attributes could've been discussed better, it was well done. I also didn't like how painless her recovery seemed to be! I know that wasn't accurate!!! Go to this link and click the "start video now" button http://www.cucirca.com/2009/01/27/house-season-1-episode-16-heavy/

Doubt has got to be one of the worst feelings in the world...

My hormones have returned for another round. This month they weren't on time. I'm starting to wonder if I'm going to end up blogging each time I have to feel hormonal at all. I know it's different, but once again the relatively normal side effects from being a girl make me feel like I have full-blown Cushing's. The worst part is the heightened anxiety or paranoia I tend to experience. It makes me doubt a lot of things. It makes me doubt people. I start to wonder if anyone is really my friend. It doesn't help that I've been very confused about a lot of situations lately. In fact, a lot of relationships have done 180's on me so that the Universe just doesn't seem to make sense now. Enemies are friends. Friends are enemies. I feel like I can trust someone one minute and not the next. I did a facebook sweep and can't say I miss anyone I unfriended. I deleted about 100 people. It'd really be nice if I felt like I had more genuine friends who aren't going to lapse on me either. I realize that might be a tall order, but I stand on my high horse occasionally. I do hope I'm on the path to making some better friends, too. I have a roommate moving in soon. I'd love to get to know some of the people I'm working with in the musical. I'd even make friends with the people in my online class if anyone was willing. The blunt fact is most people don't deserve the time I give them. I suppose I'm so gung-ho about understanding one another that I occasionally let myself get hurt more than I should. I've always had poor stamina in the face of alienation, too. Depending on the person and how close we are, I worry when I don't speak with them often. It's the hormones that push me over the edge, though. I actually had a lovely weekend. I had a reconnection with someone and generally had luck on my side. Many good things happened to me and the best part was that I truly felt like I'm still pretty in my eyes and others. Plenty of people compliment me, but the last time I was told I looked nice in a manner that isn't a routine comment hasn't happened for a while. People say, "you look good, you look good". They don't say, "you're gorgeous". It's not that I think they're lying to me, yet there is a difference in context. I wonder if that sweatshirt in the photo above would actually fit me again. I gave it to my skinny sister a long time ago. Anyway, I felt like writing because I was just lying awake as my insecurities slowly fed on me. Doubts and obscure hormone levels are unpleasant at the best of times. I wish it was as simple as being able to just rationalize them away, but I know by now that that's not how chemical imbalances work. I still don't work right. I've made a point to carry extra Cortisol pills on me, wear my medID and eat sugar and salt when I am doing anything that weakens me. I probably won't faint again, although I didn't believe I could beforehand either. To some degree, it's my own choice to stay here where I have less friends to directly lean on when I have a weak moment. If I wasn't in that musical, I'd be home. Or somewhere else. It means entirely too much to me. Cast these torments out of my head. I hope it's merely my imagination that things are out of control in my world and with friends. While I'm on the topic, I also meet a lot of companions who seem to conclude that I'm better off without them. I always thought that's a weird decision to make without consulting the actual person in question. You could almost call it a pet-peeve of mine. I don't like being left in the dark or being ignored. It's a silly, cowardly thing to do to someone. "Honesty is such a lonely word".

Sailor Moon & company are not fat! And neither are you!

So I hate to nark on my favorite show, but there are some things about Sailor Moon and weight that beg to be questioned. While for the most part, the message about having some weight is positive, sometimes they have fallen short. I do have to take into consideration that the show is over 20 years old among other things. However, if the Sailor Moon below is fat, then we are all fat 24/7. Again, usually the message is good. At one point in the series Mamoru (the main love interest) is quoted saying "a girl's beauty isn't limited to her looks". My point is the girls don't look overweight to begin with. Now, it's alright to talk about exercising and eating well so you don't get to an unhealthy point. In  the episode Usagi will teach you how to lose weight!, Usagi is seen eating a lot of junk food at multiple points. They also try to point out that the enemy is taking advantage of these irrational insecurities by opening up an evil gym. He tells "the chubby one" (for the record I think she's cute) that she can lose weight and even the skinny ones can! They look haggard afterwards, not pretty. The teacher becomes "too skinny" as Sailor Moon's counterpart, Luna the cat, points out. Usagi starves herself until she faints. The other love interest tells her she "doesn't need to be on a diet. If anything, you should gain some weight". Then Luna acts like if she eats a few dumplings she'll automatically gain pounds. Mamoru says "at least you won't gain as much" when she throws one at him. Point being that there's some back and forth discrepancies to note. I've read other debates over how Luna and Mamoru were just teasing Usagi. That's some pretty cruel teasing if you ask me. The worst part is when Luna draws a picture of a huge Usagi in 6 months time. If this was junior high school and a student was caught drawing that, they'd be reprimanded. At the end of the episode Sailor Moon says,"Girls who want to lose weight are strong!". Even with the want part thrown in there, I struggle to see the goodness of the message shine through. I actually have more annoyance towards the episode of the 4th season named Aim for the Prima! Usagi's Ballet. She has very minor love handles and everyone keeps telling her she's gotten fat and should go on a diet. The possessed skirt that gets thrown at her during a fight rips off because her body stretched it out. Give me a break! Throw a tutu at her in her size next time! They didn't address the issue at all in that episode. Sailor Moon has many good messages about  loving one another and such. Most of the weight comments are made in jest. Of course, I've started to realize the word fat can be just as harmful as other slurs. I'm sure some people used to think it was funny to tease me about my acne when I was a teenager. It never was for me. Even calling yourself fat keeps the stigma alive. While I wanted to clear up my skin, I eventually learned that it wasn't something to be ashamed of. It sucked, but it wasn't my fault. I did everything to try to tone it down. To point out one GOOD thing in regards to looks: in the 2nd season episode A huge shock for Usagi! Mamoru declares a break up, Usagi asks the store clerk if make-up would make Mamoru take her back. The clerk (who is the enemy) says "yes, he'll love you again!" Usagi immediately rejects it and says, "Mamoru is not like that!" Anyway, I love Sailor Moon and she looks fine in all these screen shots. Part of it is her character being ridiculous in season 1, yet there are also blatant, wrongful accusations in season 4 that are not worth the screen time!!!

Continuing to feel like a fish out of water! R.I.P. Dexterity

Recovery continues to be a drag when I try to do too much too quickly. I've gone back to my original dose of Cortisol if I didn't already mention that. I have to admit I feel better energy-wise, but it goes to show this is going to take some time and it's not easy to shake the dependence on it. I lead a somewhat busy life, so it's hard to even get to a doctor. My digestive issues have gotten bad enough for me to worry from time to time if something is more than a little wrong. I went swimming this weekend and that went okay. But I encountered something very frustrating when I decided to use the diving boards. I was shocked when my friend's scale said I lost another 10lbs. I thought it was lying. The reason I didn't believe it is because my skin still hangs quite a bit. When I got measured for my musical costume, they asked me what my bra size is and I didn't know what to say. I told them a size bigger than what I'm wearing, because what I currently wear doesn't fit right. Anyway, with the shrinking of my flab, I was excited to do some old tricks off the high dive like I used to. I took 13 years of gymnastics, so it's fun for me to do flips and the like. Ironically, a fellow Cushie said "she'd be doing cartwheels" if she lost as much weight as I have. It's not about the numbers though. It's the way I look in general. And it's not that I look bad but I want to be the me I used to be. A friend commented that I look like I haven't been eating. I told him this is the way I'm supposed to look considering my diet and habits. He's just never seen it. I got up to the top of the high dive and it was HIGH. I'm not scared of heights, I didn't have my glasses on, but it wasn't the height that bothered me. I was wobbly, unbalanced. It took all I could to not fall instead of jump. I tried more than once to get up there and do a flip, but it was no use. For me, it was very disheartening. I used to be so agile and fit like a monkey. I can't describe how sad I was. Being fit has always been apart of who I am. Only 2 years ago I could've done that easily and enjoyed it. There's a freedom when you can float in the air like that, yet I just felt like I was plummeting clumsily to my death every time. My coordination and my confidence is shot in regards to working my body the way I want to. Also, my mom has figured out what probably happened to me when I fainted. We think I was hypoglycemic. She said it makes you really hungry (which had been my main complaint beforehand), it gives you the digestive problems I'm having, and alcohol is a big no-no. I had a few beers before it happened. That's why it took the paramedics so long to believe I hadn't had more than I said. My pulse was also ridiculously high! Low Glucose links directly to low Cortisol. It makes perfect sense. She reminded me that my protein levels were below normal last time they checked, too. This only proves how healthy I am normally. With a small stock of adrenaline, I'm overly healthy. Maybe I would be doing better if I was used to this at all. It's finals week and then I'm going to take some online summer courses. Was glad to see that as an option, although my computer seems to be overheating a lot. Ta-ta from the Barrister of Munchkinland!

Endocrinology in history? Abraham Lincoln had cancer?

I was watching a show about some of the theories out there over President Lincoln's health. People claim he had something called Marfan's syndrome which made him really tall among other things. It is also proposed "that Lincoln and several of his family members had a hereditary cancer syndrome called multiple endocrine neoplasia, type 2B (MEN2B)". Okay, hold the phone! The reason I find this ridiculously intriguing is because I've always thought my DAD looks a lot like the former leader of our nation. I would post photo comparisons if I had them on hand. I don't know anyone who looks more like Lincoln than my dad. I'm not saying my father has cancer. I'm saying I've heard of MEN types before since I have Cushing's and have wondered if my family has MEN1 in particular. I mean, we made jokes that my dad had Addison's (practically the polar opposite of Cushing's) when we first started reading up on endocrine problems. I used to be extremely skinny just like him. I always thought that I was just like him and would always have my health going for me. Maybe I need to redefine the word "healthy". Somebody once told me it's lucky for a girl to look like her father, especially in Russian culture? I googled the concept and it supposedly means from a scientific standpoint that I have an equal amount of both mother and father genes. That I'm less likely to contract hereditary diseases. Excuse me while I snort a little ironic laugh to myself. My dad is only healthier in comparison to my mom in a few respects. Doesn't seem like luck was much more in my favor either way. It's weird to think endocrine maladies are perhaps quite common yet unknown of even within my history textbooks from high school. Another celebrity in time was diagnosed with steroid-induced Cushing's! The king Mr. Elvis Presley! "Hospital tests established that Elvis had hepatitis, an enlarged liver (possible from painkillers) and Cushing's Syndrome. That last was a hormonal disease that caused bloating, and was down to the many steroids he had been taking to combat the asthma that ran in the family and his ongoing colon problems". They said heart problems were in the genes, as well. Henry VIII is another mentioned candidate. I suppose most of it is just speculation and fun to consider. The Elvis thing makes sense to me. Sounds like the man never slept for days and was always hungry. IBS, prediabetes, high BP, panic attacks, the list continues! Then I discovered an artist on the east coast who has a very similar story to mine! It's really comforting to discover these people for me! Strange how I haven't come across any girls. I know woman in history who may have had Addison's or adrenal insufficiency like Jane Austen or that the Mexican artist Frida Kahlo could've had PCOS. Notice how most of these people are into the arts? I was meant to follow the road less traveled and be crazy creative. I prefer less of the "bitch" mentality though and the ADHD. I also find it really dumb that many made comments on the article about Elvis as being degrading; to talk about his faults in body and mind. If we don't even talk about these things how are people ever going to know these things exist!?! I understand the need for privacy, yet I find this all very enlightening and empowering. Why is it wrong for Elvis to have had problems with drugs or whatever especially considering he had health problems that haunted him? I don't get it. It doesn't make him less of a man or idol in my book. No one blatantly said he was a horrible man. Sigh, but that's how people take it. Being physically big, having lapses in judgement from depression, developing things like Cushing's is considered a disgrace. It's not the man he was. That's right! He had a malady of issues that changed who he was! This doesn't make the musical career he had and his youth less valid. It validates him more. Sickness is a good thing when it comes to explaining a person's weakness. Everyone is weak. Why is it so terrible to say that about a celebrity? He wasn't being mocked, he was human, and being sick weakened him more. It's not an attack on his character. If anything, it should confirm he was very ill in the end and that caused a transformation that was more outward than inward. He's still a legend. I respect him more if he was suffering and that unearthed bad behaviors as opposed to him just being immoral or insane or lazy. Ah, and yet one more actor named Travis Micheal Holder. He reportedly had Sarcoidosis, took Prednisone, and had "a severe muscle and joint syndrome called Cushing's disease". He had to use a cane and got cataracts. I know there was one woman in recent news who was a model or something and had Cushing's. Don't remember her name. I can mostly thank other Cushies for most of this info. It's very fascinating and clearly there's a lot to be said about the need for spokesmanship- famous or not. Such illnesses are not a crime either. It happens and should be addressed better in society.

Speaking of health care and pre-existing conditions...

I don't usually go on political rants, but when I flipped by C-span I heard the words "food stamps" and listened to the rest of the debate. I apparently don't like Georgia representative Rob Woodall. His thoughts on making stipulations for stamps higher bothers me. I don't doubt some people cheat the system, but I bet you the ones that cheat aren't at the bottom, so his battle plan is backwards. Taking away the little food stamps people get will help the debt system but burden the people who need to eat. Just to be clear: I have food stamps and I don't get much. It's called balancing your checkbook. Plus talk about bad timing. You don't take away aid for something that is essential to life during economic strife. I'm not saying never implement a cut, but not right now. I know from experience it would be harmful.Then I found a video about health care. He's clearly never had any serious illnesses and had to pay for them. Do employers not realize that sometimes people don't buy insurance because they can't afford it? If they can't even afford that, how does one afford private? Not to mention if you don't have a full-time job, then there aren't any benefits offered. Many people take the gamble without the net sadly. I've seen friends not go to the doctor or hospital when they should. Even I've done it. I still do it knowing I have ONE weak adrenal gland! It costs so much to ride in an ambulance or stay at a hospital! I was in one for two days for my surgery and we paid a thousand or more out of pocket. I bet we've paid a semester of tuition by now with my medical bills. And I don't know everything about "Obamacare" but I do know it let me stay on my parent's insurance longer. Considering that non-traditional college students are on the rise, it only makes sense that I should keep theirs until I am on my own two feet. Even so I would've lost it this month if it weren't for health issues. Not really the greatest reasons to be able to keep it but I digress. Also, regarding pre-existing conditions, I always thought it was weird that there's an age cut off. I didn't have Cushing's before I was 18, but I have it now. I may have a secondary illness the rest of my life. It's pre-existing from this day out. I also find it crazy that it would actually get me less care if I technically was. Nobody wants to insure a sick person. I thought insurance was there to protect the unhealthy? Anyway, being sick is no picnic. The burden medical bills impose is like a raid of fire ants consuming that checkered blanket and basket of foods. If you want to go to a guy like we do for alternative health, nothing covers that. The specialist I go to? I couldn't get an appointment if I lacked a health coverage plan. As for food stamps, I personally make good use of those. I'm eating a ton better (when I eat) and with a metabolic disorder, that's important. Anyway, recall Walker- as I live in Wisconsin. Happy to say my insurance is Minnesota-based. Also, I think it's funny that Obama made a very calculating move with the gay marriage thing. Good show, but he did it on purpose for the youth re-vote.

A triumph over my body! A happy update!!!

While I have gone back to my original Hormone replacement dosage after fainting (square one as it were), at least I showed Cushing's it won't take away my life in the theater business! I had my heart set on auditioning for the Wizard of Oz musical at the local theater. Despite a minor soar throat, a low grade fever, and my limbs begging to give up, I went full force; attempting to snag the lead role of Dorothy. I got into the chorus and am just as excited. I haven't been in a show in over two years. The sicker I've gotten, the less I've done. My potential is not being sqaundered! I'm so happy to say I won this round, Cushing's. Even if it's going to be difficult and painful, I'm ready to show people what I'm really made of. You'd be surprised how un-affectionate most people still are towards me. Even knowing I'm recovering from a disease that made me do strange things, they still think it's more ME than any tumor. Where is the respect in this world? You don't look or act exactly how you should and you get ridiculed and are made to feel unworthy of anything. I had an organ taken out, people. It's serious. Start taking me more seriously or get out of my life. On the other hand, there are people who truly give me support and realize I've been through some things I couldn't manage properly. Thank you again, you know who you are. Considering the rising obesity rate, I am finding more and more reasons to advocate for these kinds of diseases. You can get skinny from a disease, so why can't the same be true for becoming overweight? Why do people not understand this? Is it just because thin is considered good-looking in our society and fat isn't? Is that why people are so quick to judge? Even I thought I was pregnant, depressed, or somehow destroying myself with bad habits. Considering, as my mom puts it, "this is the daughter who eats fish and vegetables", how could I almost be diabetic? How could my blood pressure be so high when I rarely eat sweets? I walk and bike everywhere. Why would I grow a big belly and go from smalls to larges in attire? CUSHING's! Cushing's! I have stretch marks from rapidly gaining weight. That is not normal no matter how you look at it. I ask where your soul is if you don't care?

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