Another diagnosis, Another day, Another blog post

I'm clearly being facetious about the "another blog post" part as I haven't written in here since the spring. I frankly have too much on my plate as it is. I walked on a tightrope to graduation and many don't realize just how close I came to falling off said metaphor. I'm not a math graduate, but all I ever did was calculate prospective GPA scenarios. I didn't have the luxury of thinking another way. I was able to get disability services to finally admit I might need proof of my health issues. A month before graduation. I don't know how much it really swayed my teachers in the end but I did pass everything. It's just sad that I have to worry about failing almost entirely due to physical stamina. You strain you body, you strain your mind and there just aren't enough spoons for 16 credits including a bunch of upper division courses. The dean showed a lot of empathy in the last few days because we pulled quite a few strings so I wouldn't have to take extra classes for one reason or another. During the ceremony I wasn't sure I'd actually made it. I told practically no one. The good news is that beautiful diploma is indeed sitting in a frame in my room and it is mine forever! The amount of sweat and tears that went into that piece of paper can never be fully expressed.

Onto more recent things: I've moved home (much to my chagrin admittedly), tried a bit of physical therapy for "core weakness" and have ultimately been diagnosed with fibromyalgia. That's right! It's official. I have a word for my neverending myriad of symptoms. Much like Cushing's, about every detail in my little pamphlet sounds like me and my aching body. I'm grateful to the knowledgeable rheumatologist who took me seriously. When you go through the slew of doctors I have, you start to realize that you're often at a loss between the skeptics or the ones that just don't know what to tell you. Now I'm faced with trying new medications along with other things I already do. There is one that gets good reviews from friends, but we'll see if I can get my insurance to pay for it. I'm still paying medical bills from Eau Claire! I did manage to just get hired at the gym by my house. It's almost in our backyard. This means free usage of the pool, which is the kind of exercise I'm the most capable of doing. It's with kids, which is a bonus. I'm easing into it slow. I'd like a second job, although getting there would be harder. I continue to struggle with my need for independence.

Instead of getting into all that, I'll switch gears to what has really been tugging on my heartstrings lately. Anyone who has ever dealt with illness, especially an "invisible illness" or two, has to put up with asinine comments sometimes. Even well-meaning ones from loved ones. I don't write these posts to accuse anyone of being harsh as I know all too well that social communication with others isn't that simple. I may sound like a broken record player, too. I'd say my biggest fight has definitely become being polite versus taking care of myself. I tend to hold a strong desire to be courteous, which is very problematic when your body says "no". No, you can't eat lunch in the presence of others without getting some sort of digestive cramp. No, you can't walk that far without regretting it dearly. No, you can't lift that. No, you're not allowed to keep up that smile all the time. No, you can't hide it. It can seem like a world of "no". I don't enjoy putting my problems on others. I don't like bothering anyone. I get extremely frustrated when I can't seem to handle things that used to seem so easy. It bares repeating that my "cure" was not a panacea. They can't fully explain me.

I actually have some science to back this up with today. I'll post the link below. Some recent research on post-op Cushing's patients has tried to determine why most complain of persistent health issues despite being free of the original disease itself. I was surprised to see such a study. I would wholeheartedly volunteer for such a thing. It's desperately needed in the world I've come to know. Don't get me started on body-shaming either, because that's a real problem in our society as a whole. You're either too fat or too skinny and health conditions or genes are of no consequence. I found this old picture from Spring 2011 when the physical manifestations were starting to take hold of me. Another photo comparison for your viewing pleasure alongside my graduation photo as of Spring 2014. The hormones in my body did that and nothing else. Anyway, it's easy to drive that point home. It's a different story when no one can see it on the outside.

Sometimes I think wow, if they think I seem like I'm bad now, imagine what they'd think if they could see me when I'm alone... and that's the rub. No one can literally see how hard I truly try to act as normal as humanly possible. This is obviously more hurtful in a situation with family and/or friends. Most of the time, I can brush off what an acquaintance or stranger says if they don't inherently know anything in the first place. I don't expect that. It's when I'm told by those closest to me that I'm not working hard enough or that I should better mask how I feel. Does it sound terrible when I write it? That's unfortunately the point I hope I'm making. I'm sorry, I am. I hear about this all the time on chronic illness forums. How the sick apologize for being sick and say "I'm fine" constantly in an attempt to appear fine. This is an ideology that no person can or should have to muster forever. On the other hand, I'm prideful and will continue to live as best as I can on my own terms. There's no happiness in doing nothing with myself. I'm still 28 and young at heart. I honestly don't need any more criticism than I give myself. I notice when I've snapped. That's usually when I choose to walk away and compose myself if I must. There's only so much I can do about it.

Click here to read 'Bomb fuse' DNA 

linked to health problems in Cushing's

A few enduring thoughts about mobility...

There is something that I've noticed this semester: I am capable of more than I think, but still unhappy about what I can't do (at least, not on the level I'd like to be able to). I've done some interesting things especially in my movement class and my gym class from last semester. I can still do handstands and I can do other things like rolling on a mat or doing a cartwheel. Maybe it's because most of this is based on gravity instead of strength. It is also things I have understood from an early age. At the same time, I am emotionally challenged whenever I watch others do things I used to be able to do. I also get scared because I don't want to hurt myself just to prove something. I don't know how to get over this. Even with the achievements I've had, I feel upset. I had to light a dance tonight and watching them all made me sad and jealous. I also appreciate what they are doing. It is just hard to watch when I ache all over and want nothing more but to be in that artistic moment. My body has been rebelling lately as spring break becomes a recent memory. I've been walking more, trying to wake up earlier, and inevitably doing more than I probably should for school. I don't want to whine, but I get so hungry and tired. What really got to me last week was my recent grade in my movement/dance class. My teacher wrote, "You must've not rehearsed much because you forgot various parts and you were too high up".  I got a C; 74%. I felt very disappointed. After I did those dances, I got some compliments from classmates. I had been very pleased. I worked hard and others noticed. I may have strained my knees and my hamstrings, but I managed. I forgot the same part a million times when I practiced and never was able to solidify it. I hate to admit it, but my memory is a bit off even without my original illness. This is one of many signs that something undetected is going on with my body even now. I know that physical and mental stress coincide. I'm mad since I'm aware my ambitions must heel to what's better for my overall health. Good luck with that as a senior or a college student in general. As for being higher up, I certainly couldn't bend as low as I should to properly do the dance. I think I did some really creative things that my teacher wrote off as bare minimum attempts. And it's not about the grade, it's about how hard I worked to even do what I did. I wasn't sure I could do one of those dances, but I tried and did it. I really feel like the disclaimer they put at the end of my syllabuses are misleading. I've talked to Deans. I've talked to everyone. They send me back and forth. People are understanding in person. Nothing gets accomplished, though. I can't get the "right" doctor's note, etcetera... it's a joke. This isn't what bothers me- as I've said. I just feel misunderstood. I don't want to appear like I'm not pulling my weight or don't care. I care a lot. I'm just so exhausted so often that I can barely concentrate on socialization even though I want nothing more than to be connected to others. Anyway, this has become a thing I've noticed: whenever I see people do movement I wish I was more capable of, I get sad. It's a confusing and mixed feeling!

The life I'm living now is not the life I was living before

There is something I very strongly feel I need to iterate or reiterate for those of you who have been paying attention. I had a life before I ever knew anything about the endocrine system. I lived as vivaciously as I could especially after I was free from the confines of my parents. Sure, I struggled with acne a lot in my adolescent years and I could argue I had signs of hormonal disturbances even then, but there was a time when that couldn't hold me back nearly as much as it does now. I worked for a year before I went to college and I had been working part-time since I was 14. I made and saved money because I wanted to be independent. I used to go to school at UW River Falls. I joined choir. I made some good friends. I had a boyfriend I liked very much for part of sophomore year. I had more energy and no pain to be found in my muscles or joints. I leisurely played volleyball, went rock climbing, and loved to bike. Once I got out of the dorms, I didn't even want to go home in the summers. I volunteered to teach English in Japan in the summer of 2007.  The only thing that really depressed me was that I found my small college town too isolating and dull. Theatre kept me busy and another trip to Japan in winter 2008 for a history study tour. There were some physical signs then I suppose when I strained my legs a little. Nothing I'd think much of at the time. Anything wrong with me was minor at best- like asthma, which I've had since adolescence. It was when my friend from that 2007 trip died from being hit by a drunk driver that I made the decision to change schools. I was devastated about it, yet it was the emotional push I needed to finally leave River Falls. I wanted to study more Japanese, I was just going to miss all the friends I'd made... I can probably stop the story there. Most of my time in Eau Claire is when the symptoms really started to hit. Everybody seems to know that version of me. 

Cushing's radically changed my behavior and eventually my body. I subconsciously fought it for as long as I could. Anyone who was around to witness it knows it wasn't pretty. That's not me though. Even though I was able to get a cure, the only thing that really got better was my emotional control and the weight gain. Then I got hypothyroidism, gallstones, and gastroparesis. I even fainted once. The train of ailments hasn't stopped. I've been trying to deal with all this, but others don't see it. I think it's this whole concept that I'm getting "better", right? I wasn't even completely prepared for the backlash it was going to have on me. I've tried so hard to work through the muscle pain and to rise above fatigue. I knew I was going have hormone withdrawal and that I had to walk it off so to speak. I've been doing that for years now. My specialist says I shouldn't be having this much trouble anymore, but much to his chagrin, I am. He's checked for lupus and arthritis. There's little left in his field to do other than I'd like him to check a few more hormones. Meanwhile, I am facing the toughest semester I've had in ages. This frigid weather has really set off things. I thought I just had muscle pain. Now it's my joints and my ligaments, too. I can feel the exact places where it hurts. I mean, it's all over but they seem to take turns in intensity. The muscle relaxants I've tried are a flop. They just make me weaker. I'm taking them though along with Ibuprofen now because I had to go to the E.R. for a muscle spasm over break. I was seriously doing nothing and then as I was bending my leg to get up, something seized. I suddenly couldn't straighten or move my leg without feeling great pain. My neighbors had to carry me crying to my roommate's car. I didn't want to move it. We spent at least one movie there. They gave me some kind of anti-inflammatory and muscle relaxants that helped. Then pain killers so I could finally walk on the darn thing.

Thanks to that incident, I'm afraid to not take medication. I AC wrap things as I see fit. I had to wrap that part of my leg for a week. I hate taking medications. I'm lucky my stomach is holding up. I also had a cold for so long that my roommate convinced me to go to urgent care a week before that. I had really wanted to go swimming over break. Anyone who thinks I don't want to exercise has no clue. That is the comment I'm getting far too often from people lately. I'm lucky I made it through the 4-hour light hanging I had to do. Those things are heavy and I felt myself swoon (for lack of a better word) more than once. I also started to get brain fog; ie I was confusing simple things. I am actually getting some exercise twice a week through a stage movement class. We do something like yoga. I walk everywhere. I'm just trying to survive to graduation at this point. I might be able to swim on Sunday if I feel up to it. I have to get there first. I just wanted to write about how I'm feeling these days. Being in constant pain and having to do so much is just wearing me down. I'm happy I don't have Cushing's anymore. At least I know these frustrated feelings are my own and not some overreaction my body is producing. And if I had to guess, I'd put my money on Fibromyalgia. That is a neuro-endocrine-immune disorder. Makes sense, trust me. I probably won't know until summer when I get to see more specialists. Thank god I still have insurance. So I am working extremely hard even if I don't look it or my actions aren't up to someone else's standards. There is a girl I used to be. I may never be quite like her again, but I'm working towards that. If I don't look sick or seem lazy and if you never met me before all this came spiraling down, I wish you could've. She still exists. Just in smaller quantities at a time. Do the math, people, and don't assume to know what another person feels underneath the skin. You can't literally see pain.

Also, here's a good break down of what Cortisol does to you:

(the hormone that started this whole problem to begin with)

 

Click here to read "10 Signs You Have WAY Too Much Cortisol"

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: