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"