Why I want to talk about it and why you should hear me out

Shortly after my last post I managed to sprain my wrist, so it was harder to write. I suppose this continues to prove that while my muscles are weak, my bones aren't. It only took a week or so to heal, but in a weird way I liked having the brace on my arm to some degree. Why you ask? Because people actually believed something was wrong with me then. I'm not saying I want pity or extra attention. I just don't appreciate the fact that people often write me off when I try to explain my unseen illnesses. I understand that I probably talk about it too much sometimes and yet if I don't talk about it, I am even more misunderstood! You can see the dilemma. Unfortunately, being continually sick is a part of my life now whether I like it or not. Others can shut their ears and think nothing of it again. You could be sitting there saying I should just ignore people like that. I don't think so considering this includes my true friends and family who mean well. I also completely get that it must be annoying. Even my mom doesn't like talking about it. I can't blame her since she's already got her hands full with my disabled sister. Everyone has their problems. I just wish people would really listen for 5 minutes and then maybe I would stop. Should I just say I'm "fine" all the time? From what I know, that's not healthy either. I know I could go to a counselor. Granted, I don't feel like I have the time and I'd rather talk to people I'm closer to. Isn't that a fairly normal desire? Even if it's not to vent, I have to properly communicate with others and get along. Don't I?

Anyway, the main issue I am having with others lately is that they think when I catch a cold or what-have-you, that it is under my control in the way it is for most people and that I don't experience the symptoms any differently. I do the best I can to prevent being sick. Tough cookies if I want to actually have a life though, right? I got news for the masses: I get sick very easily and it usually lasts longer and is more severe. I require even more rest than I already seem to need. Much like my other sister who has an autoimmune disorder. I feel a little bad sometimes when I think about how I used to view her. She would stay home from school for a cold and I wouldn't. Now I see that she must've felt much, much worse than me. I'm extremely conscientious towards others in getting sick, too. I have noticed that when I worry about germs, others do not. That should be the proof right there. I'm not a hypochondriac, I just know how easy things spread from experience.

And forget the colds, I still haven't stabilized my stomach that well. Some days I feel better, but can't say it's anywhere near 100%. I've also begun to wonder what my endocrine system is doing at times. Apparently, thyroids are sensitive to colder temperatures (not really surprised), so the winter does make my symptoms worse. My mom is hopefully bringing a sunlamp next weekend to counteract some of that. I only have one adrenal gland and despite my gallbladder removal, I haven't escaped unscathed with digestives issues. Now throw a cold on there or god forbid the flu. I'm in no way giving up finding ways to lessen my distress. I'm just starting to read the patterns of how my body reacts to the seasons. I started slipping up in autumn last year, as well. I catch a lot of colds. I lose energy and yet I try to expend more energy since it's expected of me. About the only people who are getting it are my teachers, surprisingly. I look at that as mostly luck. I've tried to talk to other teachers to no avail and usually end up in the Dean's office pleading for help in getting leniency with attendance or deadlines. I don't like having to do it either. I don't like looking like a slacker. If I can get it done, I do. It's much easier than dealing with all that hassle as you can imagine. I mean, honestly, who really wants to be sick? Only those who are desperate for praise.

Which is what I'm trying to disprove in my case. Now, I don't mind seeking some admiration for being in a play. I don't think I got to mention that I'm acting again. After yet another hiatus with my health last year, I am in Anne Frank. I am, however, playing a smaller role and struggling much like I did in the Wizard of Oz. My weight has been going up and down like a teeter-totter (which was lost on the costume crew). It'd be nice if this ongoing "flare up" of problems would ease up by next semester. I fear I won't be able to be in another show here in Eau Claire. Not with all the credits I have to take to graduate. If you're wondering what set off this post, I don't necessarily want to put it into detail. I think the person who ultimately broke the camel's back meant nothing by it. It's just for a moment I felt bad. I don't want to bother others. If I get too deep into that mindset I shut everyone out and I don't want to do that. That is a very lonely place. My overall point is, you'd feel the need to talk about it, too, if chronic pain had been gnawing at you for going on 5 months... I haven't had much of break since the whole GERD (acid reflux) thing came about. I would absolutely love to not feel like talking about it anymore. It's not exactly a choice I can make.

Dealing with illness 101: don't feel bad for yourself

As usual, this is somewhat of an overdue post. Words have not been coming easily as of late, but I know others read this. I certainly wish I had someone to tell me I wasn't crazy before I ever had any idea Cushing's Syndrome  exists. It doesn't end there, though. I remember how much better my endocrinologist said I was going to feel after surgery. Even now my doctors doubt the correlation of my illnesses, but that may be because there isn't enough research to back it up and less about them believing me. I'm having a hard time not feeling sorry for myself lately. Not living in the past. My endo was right about me feeling better in a way; I no longer feel like a bumbling idiot who can't control her own emotions or remember anything. I look close to the way I used to, although some people don't recognize me. You may be wondering why that's a bad thing. Well, I still feel as if nobody in Eau Claire will ever know the real me. I find myself missing the friends that knew me before I was sick or, at least, when I was less sick. I had thought I was making some headway in explaining myself, but how can I expect others to understand something that's so intricate? I moved here looking for a fresh start. I don't regret it. It's just that it's a tad bittersweet after everything that's happened. It's clear that a lot of people don't believe I've got myself under control now (mentally, mind you). And I *keep* getting sick physically. The full effects may never go away. The best they can do is go dormant. I think sometimes my doctors shrug because I'm so young so it's not a big deal, right? It's because I'm so young that I feel so frustrated and they really don't see me that often. I notice the rapid changes I go through each and every day. I've gotten worried about how much weight I've lost because I know I'm not eating right. It's not that simple for me. Ever since my stomach has come back with a vengeance, I don't know what to eat. Sometimes I don't want to if it's just going to make me sick(er). I feel the hunger either way, that's for sure. I try to keep up with others my age. I run all over the place and inevitably crash. Just this weekend I went to a musical after making myself take a nap. I took a sleeping pill which I hate doing because I almost fell asleep halfway through the show later on. I drank an espresso mix to counteract it. I made it through the night and even had a bounce in my step. I decided to go out and have a few light drinks. The next day, I felt so sick that I threw up my stomach medications. You could say I was throwing too many substances at myself but I need to sleep. I haven't been. I fall asleep for maybe 4 hours. I slept better last night- probably because it finally caught up to me. There are other times when the same occurred without me doing anything more than walking too far. I use my bike for just about everything now. The longer the weather holds out, the better. Anyway, this is turning into a bunch of rambling. I'm just tired of not being able to be more active. I look at others and feel jealous. It's so petty of me, but I can't help it. My muscles feel just as weak no matter how much I work them. They also hurt. I'm sure everybody has heard that complaint by now. I don't even care that they hurt. They just stop me from doing more. I've had this contention for some time with my doctors about using something to "breakthrough" the pain as they put it. Why can't I have muscle relaxants for a bad day? Why won't someone help me work through this? It's not like I'm not trying to improve them on my own. I see an imaginary brick wall I can't quite climb over, however. Some of these feelings I'm expressing are something I need re-work through with myself, but as for some of my sentiments towards acquaintances who've seen me at my worst, I wish they'd give me a chance to be at my best. I am not perfect and often tired. I'm also not stupid. I'm fully aware of how ridiculous and emotional I used to be. Sometimes when I'm not careful or getting sick, I will become a little off. I mean, it'd be nice if I didn't keep developing new problems I can't forsee. I didn't mention the uti I had in July or the other random infection I had in the last month. When I know what I'm susceptible to, I can work at preventing it from happening again. To be fair, my body loves throwing curveballs. Just look at my medical history. It's fairly extensive. Here's a link about The Vagus Nerve. I didn't have any decent information on it before... it's the nerve that is probably the cause of most of my problems stemming from Cushing's, of course.

The vagus nerve: in Korean

This is the vagus nerve, which like every other nerve in my body, is on a permanent vacation...

The stomach disease known as GA-STRO-PA-REE-SIS

The picture above is really old. This was when I played "the stomach" for an interpretive experience of the human body and the current irony of that is not lost on me. I am unfortunately still quite ill. I have been reading a lot about gastroparesis. It's becoming clear that it is the main culprit. I'm taking prilosec and erythromycin (an antibiotic). I also got this stupid drug from the hospital called bentyl for IBS but I'm not too keen on it's effects. I honestly thought I was having an allergic reaction to it yesterday. It made me feel like the acid was trapped in my esophagus which was very unpleasant and then my throat was burning! I guess after an hour it made me feel a little better, but it reminded me of how I felt on reglan. It's supposed to be the opposite of reglan, but I wouldn't be surprised if I ended up in the E.R. anyway. It really bothered my asthma, too. I don't remember the last time I drank black coffee just to breathe better. My big problem is all the stomach acid I'm constantly dealing with. I can't even eat applesauce. It sounds like people can have both GERD and gastroparesis. I certainly haven't been treating much for either aside from vitamins and probiotics. I get tired of taking pills. I might have to take some of the amitriptylin I have for a few nights. I just loathe the side effects. It's technically an anti-depressant so it's full of them. Are you getting a sense of how many things I've tried over the years? For now, all I can do is try to eat bland foods. I was seriously jealous when I heard these two old ladies on the bus talking about getting cheeseburgers yesterday. I can't haz. I forgot how emotionally draining it is to be so sick... it's awful. I can barely enjoy anything. Another thing that seems plausible is SIBO (small intestinal bacterial growth). I've never heard of it but I'm getting a lot of cramps and gurgles in that area, as well. It apparently can go along with grastroparesis. I keep thinking about the day I started feeling sick. I ate this dish at Noodles & Co with tofu in it. All that soy fermenting! Gross! I probably seem stupid for not knowing some of these things about my own illness, yet as I said it was fairly mild before. I guess I need to start looking at this like Crohn's. It will come and go as it pleases. I just hope I can start feeling better soon. I don't see my gastroenterologist for another two weeks. I've exhausted my options around here, although I was referred to a clinic that's pretty out of my way. It's not very fun to ride the bus when I'm nauseous. Anyway, Cushing's really leaves a lot of gifts behind. I don't doubt for one second that it hasn't been a domino effect. I'm miserable right now and lonely. Will there ever be a day when I don't need this blog again? I really hope so

This is what I was mimicking in my title above:

Just put on a happy face or a nice hat... (my stomach: No)

 

EDIT: totally forgot to mention I lost about 10lbs within this time frame. I'm at 130

 Well, a lot of shit has gone down in the last two weeks and I'm blogging about it because I don't feel like explaining it twenty million times. I've been having bad indigestion/heartburn to the point where I couldn't sleep after I ate. And I don't mean a few hours. I mean full nights. Therefore, I haven't been able to eat a lot either. Honestly, the first night it happened I considered just going to the hospital but I'm poor and I don't like being in one. Especially the one here in Eau Claire. They know who I am which makes me uncomfortable. Anyway, after more than a  week I went to a doctor and all we came up with is maybe I should switch back to my old birth control. Done. I was sick of all the side effects I was getting from it. I've seen that doctor before, too. He told me flatly that I was so "complicated" that he probably wouldn't be able to figure out what was wrong. Did I mention nothing over the counter has helped? Or my prescription zofran! I finally threw up my hands and went to the hospital. I was getting really anemic. Once again, they didn't find anything. I have some medicine to pick up today that helped, though. It's starting to look like maybe my gastroparesis is flaring up... A LOT. I really haven't thought much about it since I got my gallbladder out. I was told my slow stomach was a mild condition, but this wouldn't be the first time my body has decided we should be sicker. I mean, I have been pushing myself a little, but I'm just trying to be healthy and you know, actually have some fun and be a normal 27-year-old. Most of my friends and family mean well. That being said, there are times when I shouldn't have walked so much or eaten that snack that was offered to me. I don't want to be a baby. I don't want to be impolite. I do need to pace myself. This is something I need to remember and I wish others could see that. I hate coming off as cranky. My true personality is upbeat. It's hard to keep it up when I feel sick for weeks. I feel okay right now, except that I'm madly hungry. I only ate soup, jello, and potatoes yesterday. Surprisingly, I don't think all alcohol is bad. I had some schnapps and orange juice. Didn't cause any pain. It's stuff with fizz that kills me. I'm guessing constantly going back and forth from Minnesota to Wisconsin this summer caused more stress than I needed, as well. The most annoying part is I know I can't take reglan ever again for gastroparesis. The reaction I got from that was one of the more terrifying trips to the E.R. I've had. I need to figure it out and adjust pretty much. I don't enjoy the fact that it's trial and error. But it is! Time to go test fate

Who ya gonna call!?! For psychological ghosts?

I look at Cushing's like a ghost that haunts me. I know in my case it's probably never coming back, but I haven't forgotten what it was like. I've started to notice when I'm in a situation that brings a high level of anxiety, I feel complete dread, as well. Like when I went to the amusement park with my sister. We went on this ride that drops you from a very high altitude. I was so scared I almost started crying. This fear was real, yet what I think truly bothers me is experiences like that bring the memories of Cushing's back. Even if my heart races for a good reason, I am desperate to feel calm again. It's a very subtle feeling that I hadn't pinpointed until now. Below the surface of any of my emotions is that ingrained despair I used to feel all the time. I guess it's like a mild form of PTSD. I relive it. I am the happiest when I am the furthest removed from that time of my life. A lot of people post-op say they're "cured" because I think a lot of us never really feel all better. My muscles are the prime example. Not much new on that front other than I did go swimming and it was a bit relaxing. I managed to do laps for 30 mins with intermittent breaks and occasional use of a swimming board. I haven't gone back yet. My legs felt like jello afterwards and muscles I didn't realize I was working are sore. As for the rest of me, I'm on the sugar pills this week and it turns out I was really just spotting for over a month, because I was in a HUGE amount of pain yesterday. I had symptoms I didn't even know happened with PMS. I dare say this new birth control has only made it worse! I should be able to stand up and move when I'm menstruating, shouldn't I? I had thought my thyroid was making it unbearable until now. Now it occurs to me that my body hadn't been doing anything right for years. It's making up for lost time at the expense of my suffering. And I do think I need to change which 3-month brand I'm on. In regards to the photo above, those are the graves of my father's parents. I never met them. They both died before I was ever born. Thinking of my grandparents on both sides keeps me going sometimes. They remind me I want to grow old and have children. I want to be healthy and live long. That's why I don't give up when I'm down. I make myself exercise. I do my homework. All of my grandparents were taken away too early. Due to Alcoholism, Heart disease, and from depression. I don't want our family tree to be like that. In conclusion: psychology is a bitch, isn't it? And hormones are equally unpleasant.

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.