How long does the muscle atrophy last? FOREVER

I haven't blogged since the spring, but I've got a few things to mull over today. The picture on the left is how I look on the outside, the picture on the right represents how I often feel on the inside. This was "old age" make-up for a class I was in. I am becoming so frustrated with my muscles that I will try anything to help them work. A few weeks ago someone commented on my vlog asking when they could expect their muscles to start feeling better after adrenal surgery. I honestly thought NEVER to myself. One of the biggest points of contention I still have with Cushing's is muscle weakness and soreness. It had only been 2 months since that person's surgery. It's been... wow. It's been 2 years and 6 months since I had my adrenal gland out! Of course, the more I think about it, the more I have to take into account that I was malnourished due to severe nausea for another year. Thanks, gallbladder. I drank protein shakes, but it doesn't completely substitute for real food. My thyroid flipped out during that time period, too. It has only just recently gotten to the level we want it at. So you could say I had setbacks. Even so, I never feel like I'm making a lot of headway. My lower back hurts if I have to sit up for long periods of time and stand for that matter. It's not something a massage will fix. I went to the chiropractor a few times when I was home with my parents. I'm just weak though. I made myself bike a lot last week, but then I had to take multiple days off. I realize I need to moderate, yet then I feel like I barely do anything. And it's not like I don't push through the pain. The muscles start to give out. Swimming will probably be more soothing. During the school year, I end up getting tired just from walking around campus. I had all these hours in the costume shop I narrowly finished. I still have scenery and lights to do that for. Anyway, it drives me nuts that my endocrinologist has no advice for me. Physical therapy? Whose going to pay for that and how am I going to get there? Other cushies told me I should check my Insulin-like growth factor. I guess that's a kind of protein/hormone in the body that promotes muscle growth. It's stimulated by growth hormones. I have no clue what's going on with me there, but my doctor is getting an earful at my physical. For the time being, I'll try taking a glutamine supplement which helps build proteins, as well. This is what was suggested to me by my fellow zebras. I already have vitamins and I've realized that if I want to regain muscles but also keep my weight down, I need to better manage my lifestyle. I'm eating, although not on a very good schedule. I'm sure I'm not eating enough protein. Diet may play more of a role than any exercise regiment can. The other thing I'm irritated with is my new birth control. I got prescribed Seasonique instead of Seasonale which turns out to be very different based on the symptoms I was having. The joy of womanhood has been visiting me constantly. Just about every muscle in me is stressed! This ongoing battle really depresses me at times because I want to be more active. I end up straying away from conversations because I need to sit down or I just go home. I may not say anything about it. I squirm in my chair or lean against things. I don't think others understand as I can walk. I don't grimace with every step and I'm not going to push it so far just to prove I'm in pain.

So many hormones, so maaaaaaaaaaany...

WARNING: I have a lot to say about my menses (I felt the need for a disclaimer). The newest thing on my mind in the world of my health is getting some damn stabilization. I did get my gallbladder out and had fun discovering that even dilaudid can't sensibly curb my pain now. I think they should've realized I needed be hospitalized on the IV for at least one night whether my adrenal gland was doing well or not. The intricacies of Cushing's are not well understood at all. I'm discovering a trend of pain intolerance after the fact, which pretty much makes you a drug seeker in the eyes of any physician. Cortisol really screws with every organ and sense you have. I have finally been eating and suddenly I'm 137lbs. I lamented to my doctors over spring break that I look pudgy and I'm always hungry. All the weight went to my belly. My legs are still skinny as sticks, my face is my old face again, and nothing else has changed. They told me I was being too hard on myself considering all I've been through in only 2 years. They're probably right but it didn't stop me from crying over it one night. I get called lots of things like "brave" and "positive" but there are still those times when I pity myself. When I selfishly just want my old metabolism back among other things. Not because I'm overweight or anything. There are just parts of me I feel like I'll never recover and parts of my life. I'm certainly more upbeat than I've been in years. Although, sometimes I catch myself being overly sensitive to things that wouldn't used to both me. Like if someone asks me do something as simple as take out the garbage. Most tasks no longer seem simple.  Anyway, as my thyroid continues to require a higher dosage of medicine, my menstrual cycle has gone from a monthly annoyance to me feeling like I've got something akin to the flu. Nausea, heartburn, profuse sweating, depression, PAINFUL cramps, general weakness. You name it, I've got it. I used to think it'd be unnatural to take something that inhibits this process, but now it is all too clear that in some cases less hormones are better. In the back of my mind I wonder about things like endometriosis (ovarian cysts) due to the fact that intense pain during one's period is a key sign. It's not that I'm constantly thinking about diseases I could have, but I think a lot about my own fertility since I got Cushing's. Almost as long as I can remember I've liked being around children and they've liked being around me. I don't like the idea of not being able to have one. Overall, I truly do take things in stride. It helps that I feel much calmer on a day-to-day basis. I continue to not feel strong enough to do all the things I want to or need to, however. Keeping up in school is always a battle. I have trouble fitting in other activities I like to do like swimming and theater (not to mention that'd get me more exercise than just walking). Of course, once the snow melts I can use my bike. Speaking of my muscles my specialist checked me for arthritis and lupus. It's never lupus! Fibromyalgia comes to mind. So to sum up this post: I am changing to Seasonale, which means I only got to deal with a monthly progesterone drop every three months (so less ovulation). I'm still trying to find a medicine or way to help my digestion better. One idea was an anti-depressant but I jumped that boat pretty quick. I've never had good results in the past with them. Those kinds of things have the worst side effects and it knocked me out despite many cups of coffee. Interestingly, when I tried taking a similar drug for actual "depression" I only felt a bit drowsy. I use quotation marks because I now know Cushing's was mostly my problem. I was able to refill my valium for my muscles for awhile and it curbs my anxiety. Sleep eludes me from time to time. I don't know what to do about that and I've had a good amount of strange dreams; almost lucid. I sometimes have dreams of being back in high school or in any setting with someone talking everything out. I guess I don't have someone in real life to truly and fully talk to. I mostly talk to them in my mind instead. My mind still wanders to Mocha, too. Maybe because she was my anchor through sickness and she seemed pretty weak herself. Losing her when I did was hard. I was too sick to realize. Point being I'm cooped up with myself a lot mentally. I interact with others obviously, but there are things like this that I don't get to talk much about. I did get a new guy named Chip. I felt the name had an upbeat and hopeful quality. I tread these choppy waters looking for a way to that booyie because I sure can't go back to the shore.

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,