chaosunmasked-blog

[chaosunmasked-blog]

Love Unknown

Oh, how the heart yearns to connect with another. I have found a rare instance of which I am smitten by love. This man that I love has a crazy, subdued energy that I vibe with. We like the same things, and we have interesting, deep and long conversations. 

However, I feel conflicted. Conflicted because I have no idea what I have to offer in return. Conflicted because I know that in order to stay healthy, I cannot stop my medication to have children, if he wants them. I would like to one day, but I would not be able to bare the suffering of my child due to my many health issues. 

But, I am thinking too far ahead. I have no idea if he wants children or not, if he’s willing to adopt or foster. Why does my mind go to this? It is because the specter of doubt has fallen upon me again. A ghost who always trails behind my broken body. 

I have stopped actively looking for love because of it, but now I have found the man who has restarted the carnal fires. Oh, what should I do? The tension in my soul is painful. I know that I should at least try once. Maybe ask him out somewhere, but avoid calling it a date, see how things go. 

I love the man, but at the same time, I cannot. I barely know him, but I feel that we could have a great time together. He may not be perfect, but I feel like we could manage together. 

Ahh, the crippled life and love. The crippled life is complicated. Maybe I’ll take the plunge as I always do, and crash and burn. However, that may not be the case. Maybe, I know that he is the one  through some sort of cross-dimensional telepathy. 

But can it hurt to try? Yes, because my social circle is quite small and the loss of a member, would drastically effect it. Also, people will talk, things will get awkward and I may have to find new friends. However, my track record with crushes converting back to friends has been good so far, so why stop now?

He’s a really funny guy, and I would love to at least to get to know him more. Maybe I really can. Maybe I can find us something to do on the weekends. At least take him out once. Friends do it, right? 

Well, let’s see what the next week holds. 

[chaosunmasked-blog]

Existential Crisis #142

You ever have one of those days where you realized that you had committed a series of serious miscalculations? And those miscalculations had serious life-altering consequences? And that maybe you’re blowing this all out of proportion?

Well, if you did, then we can keep each other company. ‘Cause I had one of those days again. The intense anxiousness is nearly paralyzing. All I can think about is what happened after 1 pm and how it all goes downhill from there.

But hey, when existential crisis #143 hits, I’ll feel even better about this then I do today.

[chaosunmasked-blog]

Weird Times

So, I ran into an ex-friend twice today. (Seems like I’m collecting more as I get through life. Got to unfriend them all!) We live in the same area and frequent the same buildings. Life!

Yeah, I felt awkward. I wanted bygones to be bygones. Even though I did care about the project he ruined for my team, I figured we could separate work from life. Seems like a big NO from him. I mean he did unfriend me and block my number right after his tantrum. So, yeah maybe he doesn’t want to be friends.

But I smiled at him in the local eatery, and he didn’t return it. Well, at least I tried to be civil.  

Then, I saw him on the bus. I smiled again and raised my eyebrows expressing my fake shock on meeting him again. And also partly to hide my discomfort. Who wants to run into their recent ex twice when you just broke up?

Anyway, he begins to make awkward small talk to someone behind me. Note, he’s sitting the row ahead of me. So, now, I’m sandwiched in the middle of this weak attempt at him announcing that he’s over me in a passive manner. To make it even worse, the guy can’t hear him because he’s trying to talk in hushed tones for some reason. 

Here’s my ex-friend asking the dude how his vacation was and how’s the week been going, while the other guy is asking, “What did you say? I can’t hear you. I really can’t hear you.”

As I was cracking up inside, my ex decides to finally sit next to his new “friend.” They’re talking about where they’re from, what they do, punctuated by long silences and confirmations about what was just asked. “So, you’re from Kentucky right?” 

At our bus stop, my ex’s friend basically tells him, have a great rest of your life. I hope not to meet you again, but in the most polite way possible.Then, my ex runs ahead of me, disappearing into the dark.

Yeah, I would be running too after that failed display of one upmanship. What a hoot this year is going to be. 

[chaosunmasked-blog]

The Flip Side of Alturism

People always assume that those who do good deeds have a heart of gold. Why not someone who has a heart of stone? Someone who’s so full of self-loathing that they will always subvert their needs. Someone who has been told since they were a child that they were worthless. They will give their life to save someone else as they deem themselves unworthy of living but not so important as to give themselves the dignity of suicide. As with suicide, there is always a reverence for the person who has passed, but with an act of bravery the attention is lauded on the saved. 

What about someone who hates people so much that they just let them go ahead of them in lines, opens doors? Would they appear any different than the genuinely good?

[chaosunmasked-blog]

Getting Woke

I already knew Trump was going to be a disaster of a President. I knew from his waffling on the campaign trail that he was akin to a Ditto. He’ll take whatever form of whoever comes shuffling past. 

It’s also not outrageous that he would say something incredibly racist like Haiti and Africa are “shitholes.” This is the same dude who made derogatory remarks about women, disabled people, Latinos and the people of Iowa.

What is outrageous is that this is a pattern in American politics. It seems like we have a period where we elect someone reasonable and experienced who actually improves America. Then, we for some reason when things aren’t 100% peachy, we elect presidents who are immoral, unqualified, sometimes racist and who usually want to rid America of our social safety nets or punish the poor. Predictably, life gets even worse and we regain our senses only to lose them again.

I’ve thought that I had something unique in activating the American psyche. Inspiring art, stories that appeal to our better half, shared experiences. Nope. Apparently that was tried by many as I have recently learned in my study of 20th century art. I’m late to the party.

Due to my chronic illness, I am unable to go out and protest like I could in my younger days. Running for office at this point is not even in the cards. I don’t even have enough stamina for sex. How the hell am I going to serve in Congress or run a city, much less the entire United States?

It’s even sadder still that large swaths of our population don’t know how destructive Trump really is because they choose ignorance or they are too preoccupied with “making it.” Seeing how this tax bill will affect our economy, I wonder if there will be anything for these young people when they graduate. All I see is Bush stimulus/tax cuts part II.

Running through this cycle is insanity. But we have followed it reliably since we’ve been founded. This country was never a bastion of freedom, but an insane asylum. 

I’ve heard people say that the people who voted for Trump should be moved to another country. But in reality, we are their destination. We have allowed these beliefs to continue to propagate throughout our society to our children. We have failed in educating people about the difference between opinion and fact. We have failed in encouraging painful self-reflection. And so, this is what we get. 

It took me decades to get to this realization. Propaganda is a hell of a powerful drug. The withdrawal effects are brutal, but I rather stay outside the den rather than go back in and pretend everything is fine. 

Our news is broken. Our morals are broken. But the truth is, they always have been. This is why despite efforts to correct them, these errors remain. To really have fair news and a society where are all equal and respected, we need to be truly progressive and change our ways. Otherwise, we will continue on this hamster wheel while the rest of the world will pass us by.

It’s not enough to say that America is the Greatest Country in the World when our kids are dying at rates 70% higher than other developed countries, when inequality is at such high levels, when social mobility has ceased, when people have to choose between healthcare and a roof over their heads. It’s outright painful for me to hear that. Is this what a Great Country really looks like to those who say that? If so, they need to travel. They need to see how backwards we are. Maybe then, we can move forward if enough people are exposed to other cultures and countries. 

[chaosunmasked-blog]

Facing a Life Crisis

You realize that a decision that could make your life better will force you to leave all those you love behind. What do you do?

Well, I did what any self-respecting adult did and asked those who I trusted around me. 

Person #1: It’s your life. Ask God for guidance. 

Person#2: Well, I would pass on that opportunity and just tough it out. Move to Boston and seek refuge elsewhere in the states. Somewhere with a good health care system. Also, even if it has a better earning potential, fuck it. Still stick it out.

Me: I don’t like Boston. What if you were in my shoes?

Person #2: Well, if I’m in your shoes, they’re my shoes now. I like Boston so, I would go to Boston. 

Me: It’s not meant to be taken literally.

Person#2: I know. I’m just acting as myself as if I am in your body. 

Me: That’s not how it works. You have to take into account my experience, personality and current health condition, likes and dislikes. I thought you knew me. You should be able to understand me.  

Person #2: I mean that metaphor is flawed anyway. If you’re discriminated against and asking me to sympathize with that fine. It doesn’t work for the more complex stuff. 

Me: It does if you have the capacity for empathy for the more complex stuff. I don’t even know why I’m asking you. I guess I’ll have to make my own decision.

Person #2: I don’t know either. It’s your life. Why don’t you make your own decision? 

Me: I’m still unsure, which is why I’m asking for advice. Even though I probably won’t take it, I still appreciate your comment. It’s better than just asking God. I do that a lot already.

Let’s just say, I should probably find a better social circle. 

[chaosunmasked-blog]

The End Game

And so I was right. Nothing new was learned from this expensive trip from the middle of bumfuck nowhere to somewheresville at the Super Amazing Specialists Hospital. It all felt like an expensive and ridiculous waste of my time. Essentially, I walked away without a solution. It appears that my shortness of breath on exertion is not related to my acid reflux or a lung problem. Rather the notion held by the pulmonologist in somewheresville is that I have some sort of neuromuscular disease. He theorized that I had caught an infection which lingered for an extremely long time because of my poor health, and essentially all of these investigations that took place over the last month were unnecessary. And for the kicker, there is nothing from his standpoint that he can do. I just have to talk to my neurologist to get me tested for a neuromuscular disease.  

So, I called the neurologist, told them what the pulmonologist said, and got stonewalled. They said the pulmonologist would have to order the test, but I explained that the lung doctor did not want to do it for fear of stepping on my neurologist's toes. However, they said he had to order it. So, that suggestion has gone nowhere. And once again I am stuck.  

But what really struck me as odd was the fact that he said I was definitely diagnosed with a neuromuscular disease but of an unknown type. Who the fuck would have told me that? That would have been useful information to know. It could have saved me thousands of dollars on useless medications! I'm not rich at all. I have close to $100k in debt in my name. I could have used those 1000s to pay off my loans. Shit. And most importantly, I could have informed my doctors and that would have dissuaded them from going down the yellow brick road of over-medication heaven. It could have saved my college career. But no. No one thinks that telling me that would be important. No one. And the worst part is that no one cares to work me up for that either for reasons unknown.  

Regardless, I have an appointment with my primary up in the middle of bumfuck nowhere on Tuesday. And that will be the time in which I finally step out of my heavenly pretend life is going to be okay dreamland and do battle with the 10 tentacled monster that is knocking at my door with the grim reaper right behind him. I need to demand adequate services so I can continue to live my life and at least get a feeling with what I am dealing with. I am running out of time. I need to pay off my debts or  at the very least or find a way to get them discharged before I end up kicking the bucket with my next respiratory illness. If bronchitis can cause my lungs to nearly collapse and I'm only 22, what the fuck will pneumonia do or the common cold?  

So, I have resolved to get down to business. The fact is that I am really sick, and that is a fact that no one wants to admit. Not even my local docs in the middle of bumfuck nowhere or bumfuck somewhere. And that has proven dangerous and nearly deadly (as well as my father's meddling and he has the same mindset). It is time to put my foot down and demand a power wheelchair, a home health aide/service dog and occupational therapy so that I can type with ease and handle a camera or whatnot. (I need to get a job.)  

What is evident to me is that medically I will get nowhere fast at this point. Solutions will not be forthcoming anytime soon, and the tests that are left to conduct will take months or several weeks to come back. I simply don't have the time to wait that long. I mean shit. Even my skin is developing issues, and my eyes are getting worse. I can't even go out in the daytime without feeling like a fucking vampire except the stake goes through my eyes and not my heart. My skin has this amazing new rash that causes these dark brown spots to migrate down my body and lose its pigment at the same time. And to top it all off, I lost 2 inches in height over the last year. So, yeah, life is great. I thought my bro was getting taller this whole time, but I was just shrinking.  

At this rate, I know that I will be lucky to be alive next year. I am literally close to not being able to do much. Even typing this makes my arms and hands want to fall off, but I must because I have no one to talk to. Like before, it will be much too late when my circle of friends and family understand that I am terminally ill at this point. When I am in the grave, then they will know. Everyone believes that somehow I will magically get better. I really wish that was the case, but it most likely won't happen.  

I hope that maybe I can stabilize for some time, enough time to pay off my debts so I don't sink my family into crushing debt. Enough time for me to make some money on the side to pay it off and maybe a cure could be found? But even that much hope is too much. My new doctor in the middle of bumfuck nowhere was surprised that a neuromuscular workup has not been done as well as many doctors I have visited recently. In fact, it seems way overdue at this point. However, I am not surprised because until it is too late, many doctors don't realize how sick their young patients are, which is a great disservice. I mean, people complain about the overuse of disability, but the fact is that people use it so much because doctors suck at preventative care. They don't look for warning signs of dangerous diseases or assume that because someone is 25 rather than 65 they aren't really that sick or they can't have cardiac issues or lung issues or any issues at all. So, what happens? Well, anyone can guess, they "suddenly" fall ill and become to sick to work or keep their jobs and start collecting on disability. And then they finally get the workup they need, but it is too late as their condition is already at an advanced stage where early interventions will not work or they will remain severely disabled or even die in a short period.  

But I guess, maybe it wasn't such a waste. I mean, at least I've got a little something more to go off of than nothing. Suspected neuromuscular disease is better than I don’t know. However, it doesn't get me back to living and out of the bed. And the chance of any of my doctors in the middle of bumfuck somewhere believing this suspected diagnosis is null because if they did, the testing would have been done already, and I would have been living the dream at college.

If I ever get a diagnosis, and I am still able to communicate in some way, I will probably go to the media. I will tell them off my story, and explain how self-advocacy is a wet dream. No doctor will take you seriously because you're simply not a doctor. It doesn't fucking matter. Unless you have an MD, your opinion will count for squat, especially if you're a young adult suggesting diseases that are common in older folk or are just plain rare. You will get laughed at and ignored even with documentation. People will tell you, if you don't use it you lose it, while at the same time following their advice gets you into even worse shape. I can barely walk, and I am probably destroying my joints now as my neurologist refused to order me a power wheelchair because I am "young and have plenty of years left to live." Yeah, after following her advice, I would be lucky not to have arthritis in all my joints by the time I'm 50.  

Anyways, I end this post with a toast to death. To death, who makes fools of us all and heroes of some. Good night folks.

[chaosunmasked-blog]

Here Come the Elephants

Annnnd I'm back. I am currently in the middle somewheresville at the Super Amazing Specialists Hospital. My trip has just started with a series of tests, which left me feeling conflicted. I have not seen any doctors yet, but my dip into the world where real people live has left me feeling angry and impatient.  

Yes, I will admit I have been mostly secluded since my last post. I have not talked to anyone besides my mom, the therapists and the imaginary people in my head. The sitting around unable to do anything remotely constructive or fun really wore down on me so much that I bought the SIMS 4 game and all the expansion packs. Yes, I did. Annnnd I also started reading some books that I bought. I started to fill fulfilled. I guess mostly because I felt like a real person again achieving my dreams via a simulation game. I lived like a normal person with normal personnish problems that was in control of my destiny. (SIMS can get a little weird.) But, it felt good. So, good I spent sleepless nights playing my game. The waiting game for a manageable solution to my chronic illness was no longer a problem.  

Now, it's a problem. I left the game behind, and now I'm slapped in the face with reality. In my first outing with my mom to a place where people actually lived on the beach, it was sobering. I realized that at this point, I should be out there living amongst these people. I should be ogling over my friends' children. I should be shopping for dream homes. I should be traveling, and I should be working. I should not become the next gen grown adult who still lives with their mother until she dies trope. But, I am. I truly am.  

Honestly, where do I stand in my medical care? Where do I stand in my progress towards a normal, independent adult life? The reality hit me like a brick. It was like a cold-back hand of a nor'easter after experiencing dreamlike 70 degree weather. I'm not even close. Like not even a year or so close. Some things are getting better such as my respiratory issues and joint pain. However, to maintain my respiratory gains, a large amount of time and energy is spent on respiratory therapy which makes it impossible to go back to school or hold a job. My muscles are becoming increasingly non-compliant. I can barely walk because my muscles hve gotten weaker and apparently less responsive. I also am developing some sort of peripheral vision loss on my left side (unofficially). Maybe, I might bring this up with my doctor? I don’t know.  

The truth is that in my younger days, it took me 1 ½ years to get back to somewhat normal. (After seeing a sneaky vid by my bro, my running needed some serious work.) But, I made it to the point where no one suspected I had any medical issues. However, I was in recovery mode at that point. Now, I feel like an old jalopy. You fix one part, but another part breaks apart. The lights are working but the transmission is still a mess. It sucks.  

This is not how I imagined my life. I thought I would be working, going out with my boyfriend, travelling the world, living on my own, reconnecting with old friends. But no, I'm the recluse with an addiction to playing SIMS because that is the only way I can truly live. Now, I finally get why paralyzed football players play MADDEN all day. It's because that is the closest thing to living that they will get. SIMS is like that for me, but I'm hoping I can still make progress.  

Another setback is due to how in the dark I am about my medical care. I don't know who's doing what, what my treatment plan looks like, what my trajectory in life would be like, how to become functional. I mean, I don't even have a disability parking pass. What the fuck to do now, is the question that has remained unanswered. I ask and ask, and all I get is, well don't worry about it. Just try to breathe. It'll work out. But the problem is that I have been breathing for five years not trying to worry about it. So, do I keep breathing or do I wake up from a yogi induced slumber and do something with what I've got?  

It's like. Life is passing me by. Unfortunately, I cannot get a do-over. (Even if I did, it probably wouldn't help due to the possibly genetic origins of my illness.) It's not like SIMS. I can't choose a new life, a new body on a whim and try something else. Why do people talk like that? I mean, shit. No matter who you are, you won't be 21 forever. The bills will come due, you age out of your parent's healthcare plan and the US completes its transformation into a dictatorial democracy. In time I'll be screwed, but no one is waking up yet. It's like the ridiculous solution to my dyspnea given to me by a doctor. Here's the exchange:

Doc: So, I've gone over the results, and it appears you have restrictive lung disease.

Me: What's causing it?

Doc: I don't know.

Me: Okay, so what do I do about it.  

Doc: Breathe deeper.

Me: I can't breathe deeper.  

Doc: Well, you've got to just breathe deeper. Let me know when you come up with something else that can help.

Me: *Staring dumbfounded as doctor walks out the door.* To myself: So am I going to die?

This is essentially the interaction I get, or it's essentially silence. Like when I asked one of the doctors at this Super Amazing Specialist Hospital, so what’s next? What can I do to improve? Still nothing much has come back. But, I am getting more tests done and more referrals from this doctor, so I guess it's something, but it is going too slow for me. By the time this doctor finishes the evaluation, I hope that I won't be stuck with a 6mths left to live death sentence.  

The question I would like to know is, will I die in the next year, or can I count on living for several decades. I need to know. Yes, nothing is certain, I could even die in the next second. But I need to know my odds to plan for the future. I want to go back to school, but should I go to the uber-expensive but totally worth it school, rack up hundreds of thousands of dollars in debt that could be paid off over decades or pay off my remaining debt and try again in a couple of years for a school that I could pay off immediately. These are serious questions with serious consequences. The difference between leaving my parents destitute or leaving them with fuller wallets.  

Anyways, at least I don’t hear what I brave soul I am. I have to live at this point. Death is not an option because I don't want to leave debts that my parents or family have to pay for on my behalf. Co-signed loans can be a bitch when one party dies. I don't want that. I don’t want my parents last memory of me is being the one who forced them to sell all their belongings to pay for my debts. I am no warrior. I am but a cynical soul who no longer believes in the platitudes. They are useless in the face of bone-crushing, life-ending reality.  

Anyways, let us hope that tomorrow will lift my spirits. I have to remember to ask the tough questions like what is my prognosis like? What do you think this is? Should I even go to the doctors anymore since all they seem to do lately is fuck me up or collectively agree I am going to die and offer useless solutions like breathe deeper? What the fuck do I even have? Do I have other problems I should be aware of? (Seriously, according to my abnormal lab results it looks like kidney and liver failure are in my future. But, no one has discussed them with me, so I'm just making assumptions.)  What the hell do my local doctors do? What do I do?  

Likely will be met with pseudo-intellectual silence full of intense thought that will go on for centuries or most likely dissipate in a few hours. Or, possible given the useless label medically unexplained symptoms(MUS). Congrats! You have a diagnosis which will not get you any services that you need or guarantee appropriate treatment. It’s as good as nothing. Nothing. Nothing will be done unless you find the one human out of 1000 soulless doctors to take you on and try to figure out something. Otherwise, you're fucked.  

P.S. To all the future doctors out there labeling someone with MUS and sending them back to their clueless local doctors does not work. Give them a referral to someone else who might know an ounce more than their existing doctor. I did get sent back with MUS, but also treatment suggestions which were made to me privately, which undermined every relationship I had with my doctors in the middle of bumfuck somewhere. The only doctors who gave me a sympathetic ear so far. It's been great almost dying and not getting my medications filled on time. Just what you guys ordered!  

Anyways, here's to a better tomorrow. Hopefully, I'll be able to relay better news. Yeah, right. I know better. Peace.  

[chaosunmasked-blog]

Denali is a River That Flows in Egypt...(or something like that)

Watched Legion today. It was amazing! The convoluted story and timeline that it set up was sure to be a head twister! Smart TV strikes again! I was drawn to looking up the story behind the eponymous mutant, and it seems like this show could be quite interesting. I would love to see if any of the characters we see besides Legion turn out to be his split personalities? If so, he's so far down the rabbit hole, I don't know how he'll get out.

Besides being completely absorbed into the storyline to forget that I have lung exercises to do (Yup, incentive spirometry. It's a bitch at first but it's worth it.) and the allusions to A Clockwork Orange, I also saw a little of myself in Legion. Well, I did have hallucinations that were on that level of fucked up. But what really got me was, will this man ever get better? He has a severe case of paranoid schizophrenia, and some extreme powers, which cause him to question reality at every turn. Even when he is somewhat normal and medicated, his hallucinations and delusions continue but in muted form. I felt a similar kind of hopelessness.

Honestly, I'm so far down the medical hole that I'm practically in Wonderland. I'm a mess. The doctor from somewheresville at the Super Specialized Clinic with some of the best doctors around still can't figure me out. I look at my lab results, and I'm a complete mess (before the overmedication bit). Not only are my lungs still not up to par with someone my age, I have recently found out that I lost 3lbs from last week and my calves are hurting like crazy. Also, my blood sugar is consistently a problem. Almost every time I'm in the hospital it's either too high or way too low. So...why hasn't someone checked by blood sugar? Oh wait they have and my fasting is normal, but when I eat. Watch out! The pseudo-diabetic is in!  

But, the question for me is, will I ever get better? Will anyone be able to get to the bottom of what's causing my body to fail so quickly before the end? Or will I be stuck like Legion with my increasingly worsening health as my only company? But, it was kind of liberating to think like that. I guess the reason is that I dislike going to the doctors and hospitals as I have all these tests and nothing conclusive pops up. Oh yeah, there's something wrong with you, but whatevs let's just chalk it up to Conversion Disorder instead of figuring out why your blood glucose is dangerously low when you have your "freezing episodes". The amount of ignorance and lack of intellectual curiosity or even the simple fact of doctors not doing their jobs properly, does wear on me. I've been to about 50 doctors and I haven’t even blessed the age of 25 yet. About 90% don't do their jobs correctly which puts the other 10% into crisis mode to try and save what's left of my wretched body.

Even this new doctor was considering Conversion Disorder. I didn’t even want to argue with the man. It's been brought up so many fucking times. I even decided to see a psychologist regularly to starve off the possibility, but it still gets brought up by medical doctors. I mean the doctor I have at the Super Specialist Clinic in the middle of somewheresville is a neuropsych doc. I mean wouldn't he have caught it? Jesus. I've actually been to three and all have been a resounding, no you don't have that.  

Shit, if I did. I probably would be better right now living out my dreams with my husband turned wife, whom I may or may not divorce. (I do have a guy in mind, but I'm not sure where his sexual interest lies nowadays.) I would have been a cinematographer capturing stories and trying to save what little human empathy we have left. I can tell all who question me, but it's medically necessary for me to live like a hedonist as stress is but too much for my weak constitution to handle. But no, I'm here typing on a computer as my hands scream bloody murder.  

My parents have gone off the wagon as well. My mom doesn't want to deal with it and neither does my father. They think that I'm just taking some time off, not really acknowledging the fact that I'm really sick and may never regain the ability to work again. However, my dad does have moments of clarity when he realizes how dire my situation is, but then he slips off into a mad delusional state asking me why I'm not doing anything for myself. (Maybe it's because I can barely walk 300ft without passing out and suffering a heart attack? I'm not joking. I actually did acquire some mild heart damage from doing the laundry. Yep. Just doing the laundry causes a mild myocardial infarction.)  

But, can I blame them? Nope. I don't even want to dwell on that too much. It's useless as my therapists say because there is nothing certain in the future for me. It's best to live in the present and appreciate what is working for you, which is the rule I live by.  

So, I just focus on my upcoming physical therapy appointment. I'm hoping that it'll lead to some improvement on my end instead of becoming the overwhelming disappointment late last year. One medication change wiped out months of accomplishments. But, we'll see what occurs this time.  

My hopes for now is that I'll be able to go back to my college or a college abroad. Frankly it's getting too expensive for me, and my future is wildly uncertain. It's not the time to be making $1 million bets right now. Seriously, it'll get that high if my dad has his wish.  

But the thing that led me here was me. I should have sought a second opinion, but I don't like doctors, probably more than most so... Whatevs. I wouldn't have gone anyway even if me from the future pulls up with a ventilator and a foot in the grave. I probably would have told her, but we had fun right? *Winky face* And I really did. I regret nothing. I just hope that I have enough juice left in the tank to pay off my massive debts at least.  

Random side note. I just discovered my college offered a major course online and I was thinking of switching because at least I could work from home right? Well, it turns out the courses are few and far in between. Up to a year wait  in some cases, and you can't even follow the course sequencing if you take it online. No college student should ever come across something like that at all, which makes me wonder. How many online students have actually graduated?  

Peace, till the next time.

[chaosunmasked-blog]

And Yet...She Lives!

Well, I made it to Sunday and was admitted to the hospital later that evening. My breathing got worse, my abdomen was bloated and in pain, my muscles were cramping, I was extremely weak, and was just suffering. I was denied my home medication for three days, which just made everything worse, and my dad sent in a psycho doctor who did nothing for me, but increase my stress levels.  But all in all, I finally cut my dad out of my medical treatment, which had resulted in delays in my healthcare and got a decent doctor who got to the bottom of all of my suffering.

So, it was  a happy ending overall. The reason why I was having these lung and mild heart issues was due to...overmedication, undertreated acid reflux and my dad's meddling. The winning combination of medication was Pepcid, which I was on before and an Anoro Ellipta inhaler. I didn't need Ventolin, Symbicort, Atarax, Claritin, Prednisone, Carafate, or any of the ten other medications that were added in the past month. In fact, the medication I was on before I left for school was pretty much all that I needed. I also discovered that my dad had gotten involved in my care and had told my doctors to put me on all of that medication, which had worsened my condition tremendously.  

How did he do it? I mean, I'm 22, so I should be the in the driver's seat of my medical care. Well, I have some pretty feckless doctors who don’t do their jobs. Not all of them are weak and easily manipulated, only a select few. I assumed that their decisions were based on their clinical impression of me, but nope. When I pressed them, I realized that it was at my dad's insistence that I be placed on these meds or taken off of some of my meds. One doctor ignored me, had my dad give a factually challenged rendition of my medical history (which my dad doesn't know much of it at all) and didn't even ask me what was going on. Ignored my meds and prescribed me an inhaler which was responsible for sending me to the hospital. Look it up, LABA (long beta-agonist) inhalers are deadly when more than one is used together. I can't believe she's even a doctor.

That was extremely troublesome to me. I have a complex illness and you are relying not on your knowledge and observational skills but on a man whom you haven't seen (in some cases) to dictate the care of one of your patients? That to me is a red flag. What the hell kind of doctor does that? In this case, if I called up pretending to be Joe Schmo's daughter, I could have a doctor change his entire medication regime and kill him.  

Regarding the psycho doctor, my dad is at fault once again. This man that he sent to me, according to him, tried to persuade my dad to kill a man by unplugging his ventilator and labeling his death "natural". The man in question was a patient of the doctor who had undergone an experimental surgery that went terribly wrong, landing said man in a coma. The doctor wanted to push it under the rug. My dad said he heard the man had changed and wanted him to take a look at me.  

Hold on. A man, who wanted you to kill someone. You want him to evaluate me because someone said he changed? I don’t care how much he changed. When a person is willing to kill someone else, I would not care how much said person changed. I would not let them oversee the care of someone I love. That's just over the pale.  

So, from now on, my dad is officially blocked from my health care team. That's it. It's final. I thought my dad changed. He did. But, he is also lacking in proper decision-making skills. I mean. Who the fuck thinks that would be a good idea? He's a doctor, which I forgot to mention. So, wouldn't the fact that I garnered ten new medications in the last month (and from the same doctor) be a warning flag? And 3 of them are known to cause deadly interactions. What the fuck is going on with him?  

This suspicion I also relayed to the doctor at the hospital because it's been a month,  and I'm getting worse despite all the medications the doctor is throwing at me. I'm glad I did because he took a good hard look at my med list, and took me off of half of them. Now, I'm down from 20 meds to 10 in only a four-day stay at the hospital. And I'm feeling much better because of it.  

I've also got a new doctor where I live in the middle of bumfuck nowhere. He seems promising and willing to help me sort out what the hell I've got going on. So, we'll see what happens. He's helping me get the physical therapy rolling at least and willing to help me get a better treatment plan in place.  

Honestly, since I'm feeling better, my first instinct is to get moving and go back to college. But, this is the second time that symptomatic treatment has made me see Jesus. I might as well follow this doctor's advice and stay put for now. I have a year to restart my studies, and everyone at my college recommends getting my affairs in order first anyhow. In the meantime, I am  preparing for the next step in my life. I'm not only sitting idle at home, ranting at the world. I'm learning a few languages just in case I have to make a career change. (If I have to change this will be my fourth college, and I just can't afford American schools.)

As I side note, I just want to comment on how far and fast my hometown has fallen. When I was admitted to the hospital, which is one of the best in my area, it reminded me of a third world country. Sick people lined up against the walls outside of hospital rooms. IV poles and heart monitors everywhere. They didn’t have enough rooms in the actual hospital to accommodate admitted patients and we were placed anywhere that they had room. The staff was not trained to handle us, but I do commend their efforts. It was crazy! A few years ago, I remember when admission meant an actual hospital room equipped with a bathroom to wash up in and monitoring equipment. Yep. The area where I was staying did not have a shower room to keep clean. And I broke out in a rash because of it. I just stewed in my own sweat.  

Welcome to the life of the everyday American. It sucks. You just can't put lipstick on a pig. We're a developing nation masquerading as a developed nation. And that's the truth and has been the truth for several years. No matter what anyone says, Trump is the president this nation deserves. Anyone who says otherwise is just delusional.  

[chaosunmasked-blog]

The Unraveling

And here I still am. Sorry about the massive amounts of posts that just appeared.  For some reason, tumblr is blocked at my school, and I was only able to post when I got home. Not to mention I was in the hospital for a week. It was as if it were a best hit album of the best doctors of the bumfuck somewhere place that I attend college.  

Anyways, I was admitted twice in the same week! They let me go the first time telling me everything was normal and to follow up with my primary care doctor in a week. The problem: I don't have one in bumfuck nowheresville where I live. So, they said oh yes you can just stay here for a month until you get this figured out...Uhhh, what?

I don't think they understood that too sick to go to school means you have nowhere to live. Once you withdraw and you live on campus, you're kicked off the property. Also, what about my mom? My parents? They can't just zoom down here and buy a house or rent an apartment for who knows how long until I get better. They have to go to work so that they have the money to pay off my medical expenses. Newsflash: broke college student is even more broke when they have to bus themselves between doctors' offices, the ER and the local pharmacy. My meds now cost me $600 a month, which meant buh-bye spending money for college.  

So, I left. And then, I came back. Symptoms were worse and low and behold, I was admitted to the PCU, which is a step down from the ICU and tested and treated for the whole host of problems that a didn't have 5 hours ago. Yeah, right. They knew I was really sick. It just turns out the hospitalist was a bitch and discharged me knowing that I had a severe restrictive lung disease. Which the last time I check, doesn't mean nothing is wrong with you. My discharge papers also mentioned partially collapsed lungs and acute bronchitis.  The pulmonologist fought to keep me in, but she snuck me out after he left.

Anyways, new list of problems. In addition to the bronchitis and partially collapsed lungs. I have a severe restrictive lung disease, severe GERD which lead to a malformed laynx, extensive swelling and redness, my lungs were pretty much entirely inflamed except for a few spots in the upper lobes, lingual thrush, severely inflamed tonsils (which have been inflamed since July and no one inspected them, seriously??) and abnormal mucosa. I had three biopsies. Also, my arterial blood gases were way off, and I have a weak heart regurgitation throughout almost all of my vales. Also, a new deficiency: potassium. I'm just a leaking ship.  

So much for nothing's wrong right? Also, I almost died in between these admissions when I went to a 2nd hospital for a different opinion (still had that horrid breathing issuwe) and they gave me Valium. Despite the discharge papers from a few hours before stating I had a partially collapsed lung and acute bronchitis, they thought I had anxiety. I was brought back an hour later with increased difficulty breathing, stridor and was unresponsive. Luckily, my mom suggested Ativan which brought me back to life, somewhat.  

If the hospitalist had only done her job properly, her hospital would not be facing a large fine. And, I would have avoided that near death experience. But, in this country, no one cares as long as they get to go home on time. If that poor sucker dies on you, you still get paid. Right? Only matters how many dead bodies you can hide before you get that first million. You've got to be smart about it.  

The best part though was when I was sent home the second time. I was told by my pulmonologist that I was just freaking out over nothing. Everything I have is treatable and don’t go to a doctor for every little thing. However, my parents were told the exact opposite, which led to our little fight today over going to urgent care. I obviously lost as I was too weak to resist when they marched me to the doctor to get some new medication as my symptoms came back. Newsflash, new medication is not working.  

Then, I got curious and did something I hardly ever do, which is to read my medical records. And low and behold, I'm really sick. That's how I found out about all this restrictive lung disease, heart condition and how my body has landed me in a whole new town of fuckery. And don’t forget about that wonderfully high blood glucose, which no one cared to treat. And still is not addressing.  

So, that's almost every system of the body that my mystery illness has affected. It's destroyed my CNS, kidneys, liver, GI track, heart, lung, immune system/bone marrow, eyes, musculoskeletal system,  pancreas, urinary tract and thyroid (levels swing between the two extremes also a new discovery in the second hospitalization).

Yep. And despite all this the pulmonologist said I'll get better. I'm confident. We didn't find anything scary...Yeah, right. This stuff is serious shit. I felt like the ENT was the only honest doctor in the room. He said flat out, "You're too sick to be in school. You're seriously ill and need to be admitted to a hospital that has excellent specialists. I'm out of my depth here."  

And his statement is the only one that was honest. I mean. Seriously. He's good. Also, that nasal polyp I had. It wasn't a polyp. Whatever it was is unknown. Which is a problem. I mean a mass appeared in my nose several months before my health takes another nose dive and disappears. Doesn’t that warrant investigation?  

I also asked about my tonsils that back in July the doctor said they were inflamed due to multiple childhood illnesses. What the fuck? I asked them to take a look, and they said nope. That's what it is. Even though you're seven years removed from any major childhood infection that you had, your swollen tonsils are due to that. It's completely normal. Bullshit. I mean my primary care doctor looks down my throat and saw nothing? He didn’t see the large, swollen, red, thickened tonsils in my throat? All he said was, "You're really sick and don’t know it."  

He gave me antibiotics despite my lack of a fever. I didn’t take them because I didn’t feel like I had a bacterial infection. I had no fever after all. But, anyway it wasn't bacterial or even what he thought it was. He always thinks I have sinusitis, which I did not and do not have and he gave me the meds for that. Whatever freaky thing is growing on my tonsils is not responsive to antibiotics because it seems like it got a whole lot worse.  

But anyway, I am not surprised by this development. I'm fucking dying, and no one can figure out why. It has been the status quo for almost a year. Maybe hope still exists out there with my specialist in the middle of somewhere, but I can only pray he comes up with something when it's not too late. Or if the nurses will even tell him one of his patients is probably on the verge of death. (Honestly, he's the best doctor I've ever run across and the first to actually read my entire medical record, but his nurses are the worst bitches I've ever run into. I have to call several times in order to get my two buddies in there to get my messages through.)

Despite France's backwards culture, the doctors actually do a through job and take into account your medical history. Here, the docs throw all that away most of the time guess and nearly kill you (if it's not something mundane). I mean of all the docs I've been to, excluding psychiatrists and psychologists, he's the first to actually do his job. I guess it helps not being American trained? I can't give an answer as to why doctors are so shitty here versus any developed country, but ask a good doctor (if you can find one) and they'll give you a laundry list of issues they would like fixed. (Ironically, I know a good doctor and he prefers to treat himself before relying on one of his colleagues. That should tell you something.)  

Exhibit A, the urgent care center. What just happened to me this evening is a clarion call to all those who think America's medical system needs a wake up call. I told the doc, here's my medical record from my recent hospitalization. Her answer, "I don't have time to read that." Instead, she failed to take a medical history. I brought up my thrush infection, since it could cause some of my symptoms when it spreads. She said my thrush infection is something that should be taken up with my primary (which I told her I don’t have yet in the middle of bumfuck nowheresville) and gave me an inhaled steroid because my dad asked her for it.( Nowhere in the notes I received from the hospital did the lung doctor mention that I needed that.) And it didn't help anyway. So, there you go. Drug number 18 and it doesn't work.  

This is the problem in America. No one wants to do their job either as a citizen (the election of President Trump) or as a doctor except for the very few (25%) who actually like their jobs. I imagine in that 25% there are probably a good chunk of incompetent people so the percentage of good doctors that won’t kill you in the US is probably quite small.  

So, there it is. Sunday is on the horizon and I hope to make it to Monday at the least. But who knows. All I know is that those Syrian refugees being diverted away from the US are going to receive much better healthcare than myself.  

[chaosunmasked-blog]

Dying is Easy. The Process of Dying...Not So Much

Life unilaterally sucks. No, that's not it. My life has been good for a few years. I accomplishd many things on my bucket list. However, this is a bad part. A slow and uncertain part. I'm too sick to continue with school, which breaks my heart. However, it's much better than dying early. Perhaps? 

Nevertheless, I almost died a few days ago, but my dad made a mircale call that kept me from falling into the precipice of death. I have a third chance. I've got to take it. I have barely any energy to type this, but I still have a purpose. I feel. Maybe I have served it, as I have inspired many people to follow their own paths to accomplish what I felt like I should accomplish. The only person who knows is God. 

If my respiratory system is failing, it is not good. My worst nightmares have come true. But, it is not over yet. I hope to have more good years left, but the chance of that is failing. No one wants to touch me, and the nurses/ staff at my doctor’s office have left me confused. Does my doctor still want to be involved? Am I left on my own again? 

Honestly, unlike before, I don’t care. If I die, I die. If I live, that would be great, but only if I could have a quality life. Livinig out of hostpials is not the life for me. I want to see the world, to travel to be me. To fight for the America that I once believed in, to help turn this country into a new age. 

But everything has it's season, and perhaps mine is just about up. I hope to be able to make it on the plane back to New York, but I am obviously concerned about my breathing. I was suffocating on the way down here, and I didn't feel half as bad.

Regardless, I'm at a point where I don't really care. I'm physically exhausted as a result, and my health care costs are through the roof. I spent all of my savings over the past year on medical expenses. I'm getting better in some ways and worse in others. Life is a struggle everyday. 

But, I still have hope that I'll be able to cross of another life event on my bucket list: to go to Iceland. I want to visit, become immerseed in the culture and absorb all of the natural beauty that small island has to offer. Unfortunately, visual effects may be out of my reach due to hand issues, but at least I love coding. Maybe I could use the same system Stephen Hawking has? 

Even though my body's on it's last legs, I don’t want to die

[chaosunmasked-blog]

The World Comes Apart

Pissed beyond belief, at myself. I know people don't change but damn, do you want to kill your daughter. Go ahead, spread all of your lies, make me undergo unecessary treatments. Please! Yes, let's deny her proper care. If you want me to die, I'll do it. Fuck life! Fuck America! I'm done. I can't afford this schrade. If I collapse in Monty Hall and die, so be it. 

Just went to the ER because heart was racing, shortness of breath, chest pain, arm pain, general fuckery. Well, I emerged none the better and I can't sleep. It's hard to get a good night's rest when you can't breathe deep enough to fall asleep. I told docs that I tried such and such inhalers with no luck and prednisose. Guess what happened? I got prescribed the same fucking thing and told to see a pulmonologist...on Monday. It's Friday fucking night. How will I survive without any sleep? I guess if I croak and die on Monday. That'll be it. I'm in pain and suffering, and if I die trying to at least do something meaningful with my life so be it. SInce I last posted, I have been fighting a nasty battle with what appeared to be an infection, then turned into an out-of-control inflammatory response (w/o a fever the whole time by the way) and is not responding to anything. Fuck my life. I get a note that says to stay home for 2 days. LOLOL does nothing for me! It's the fucking weekend at least extend that shit till Tuesday, but no. I'm stuck with lungs chock full of mucs that is actively drowning me. This is the way most severly chronically ill people die anyway. Pneumonia/lung infections kick their ass. 

Speaking of kicking ass, my immune system is doing nothing but proliferating, killing me and not fighting off whatever is living in my lungs. Also, I can't cought this shit up when it gets down to a certain point. So, new infections arise and try to kill me. Maybe this time, I might actually die. Probably of insanity. Can't even sleep. Might get hit by a car or some shit. 

Life was well spent. Whatever.

Another pissing off day today. A dude that I sort of know who's in my class is being toadied to by the administration. Guess what, the dude's lazy as fuck. Get's someone to provide him code to get his assignment done, uses unauthorized software that is not allowed to be usd to complete the assignment and gets 110% while I trying to learn the software churned out some shit and got a 50%. Yeah, I know the world isn't fair, but what pisses me off is his laziness. I like to see people create great looking stuff. It inspires me to get better or at least get closer to God than I may ever in my lifetime. But, if great looking stuff is the product of for lack of a better term, cheating, it pisses me off. This dude appears smart, but is ignorant and arrogant. Tried to explain to me things that he doesn’t know in a way that pseudointellectualizes his bullshit. Good luck getting his way into that top flght job. His stuff looks great, but he doesn’t know shit. He'll probably get the job and if he doesn't wise up and learn lose that job and get kicked out of the top tier studios. 

Seriously man, when you're supposed to be programming in a class, why aren't you? Why are you skipping the requirements? They're there to teach you. He asks someone to do everything for him, he lacks problem solving ability. He'll be the next Professor from Hell (nickname for specific faculty member at my school that shall be unnamed) for sure. 

To recap, this professor put out a shitty reel, got a job he didn't like because he knew how it work. Produced shitty work at shitty job, did shitty things to his co-workers probably because they wouldn't cover for his shit. He deleted a job for a client that cost 100s of man hours. Probably because he didn’t know his shit and is now teaching here dealing out shit like some bargain-basket crystal ball reader. He claims to know despite your amazing work that you will amount to nothing no matter what, like himself. The greatest form of arrogance. I hate him. I'm glad he's away from the Freshman because he's a dick. That's it. A dick with a great smile and energy, but when you're alone he'll pounce like a fucking jaguar in the middle of the Amazon at night. 

That is this dude's future. Also, he expects an A everytime he works hours or days on a project. Because...A equals effort. Whoever the fuck thought that was a good idea didn't think long term. In the real-world, no one cares how much time you spent on something. All they care about is, is it done and is it good. Just skip telling them you spent 30hrs on it when it takes someone of appropriate skill 2 hrs, it just puts you right on the fast track to getting fired. Shit, I spent days and hundreds of manhours on projects and I still fail them. But whatever, I learned from my experience or got something useful out of it. However, he doesn’t understand the virtue of failure, struggle and life itself. He wants it all handed to him on a silver platter like my bro who develed into the depths of alcohol trying to reconcile his beliefs with reality. 

I'm not perfect, but damn the future for our country looks so bleak, I'd be lucky to die tomorrow. Too much self-absorbtion and arrogance and ignornace and too little wisdom and humility. But in all honesty, I would like a chance to at least attempt to pay of my debts and go to Iceland first

[chaosunmasked-blog]

The Sheen Comes Off

Another day another distinct version of hell. Well, it really wasn't that bad. It was actually a great day, but what made it slightly hellish was the experience of being stuck in my academic building for hours and realizing what a nightmare it will be. I spent virtually all day in front of a screen, and the realization that it will be my life was not that great. 

See, I'm an outdoorsy person. Despite the 99% chance that someone will find me languishing in a building, I much prefer to stay outside. Hence why my dream job was to be a cinematographer who would travel the world, filming all that God's Green Earth has to offer. I miss the smell of pine needles, the white waters of rocky rivers, and the occasional mini-LSD trip that hemlock sap dripping onto your head gives you. 

I do not want to live my life locked in this cell. Ugh. I really hope where I work is like a modern business office with lots of natural light and open floor plans, and not like where I'm studying now. The rest of my academic life will be lived virtually in hell. Great. Just great. If anyone knows of how a cinematographer who doesn't have the strenght to lift 10lbs or walk 800ft can do their job let me know. I'm being serious here. 

I like visual effects, but not that much. Not at all. Maybe the me of 10 years ago would have loved the idea, but I don't. I need nature man. I'm a hippie man. Come on life, give me some loving. Anyway, between the, "Wow I didn't know if you would come back" and " I bet this is better than being in the hospital," this is much worse. I mean I was pretty bad off a month ago, and I'm still not doing great. I don't like being pitied, but being stuck indoors WITHOUT natural light for the rest of my life is worse.

[chaosunmasked-blog]

Another Round of College

School's back in session! Whoo hoo! I really wish I had the strength to just randomly yell, "Whoo hoo," whenever I wanted, but that is not the case. It has been an interesting introduction to my major to say the least. 

My cinematography class that I was freaking out about, in terms of my fitness for the course, is perfectly adaptable for me so I don't need an assistant or to be disqualified from taking the course. Yay! 

My other class that requires filmmaking will hopefully be the same way. I love group projects! Group projects save an disabled person's dignity. At least, I can take on a role that I can fulfill and prove that yes, my life still has worth even though the doctors up north don't think so. 

But, my programming course...brrrr. I don't know. It has come up as a surprise for me. I can't mentally keep up. He just goes to fast for me, even when it comes to typing, There is just no way for me to be able to code, model and take notes efficiently. It's just impossible. So, I may need a notetaker for that one. We'll see... 

Physically. I'm doing much better. Yay CoQ10! (It's a vitamin that normal people produce in abundance at my age, which my body is lacking for some reason. The deficiency is my assumption as I'm not diagnosed yet.) It's greatly reduced my fatigue. No more expresso shots followed by two bottles of coke. (Yes, that was my life last quarter.) But, I still get sleepy around 2pm, but I don’t fall asleep, which is great! However, my joints still ache like an aging grandmother and my memory isn't really that sharp. I thought that it was until I realized I couldn't remember my friend's names or how they looked like. But at least I can learn again (*concerned laugh*)! 

Unfortunately, I've also become weaker and my handwriting is getting even worse if that's possible. But, I'm still going to keep living! Even though I am already exhausted, I'll power through the quarter. Unfortunately, I don't have many options. I only have doctors in Savannah. I don't have any doctors at home, which is understandable since barely any doctors live in the middle of bumfuck nowhere. I mean, who wants to by choice? The schools are passable at best, and the job market is even worse.

It's more like this: Good luck with your promotion at Walmart Jimmy! You've only been waiting 20 years to get paid more than $12/hr. Go and get it man!

Than this: Five years and you're making $100k. Nice bro! 

Which place would you want to live and raise your kids? Maybe that's why most of the doctors in my area aren't board-certified. The hospitals essentially just take whomever comes in through the door.

Ahh, I also forgot. I just came back from the doctor, and lo and behold my GI symptoms have been substantiated. I had an upper endoscopy which revealed inflammation of my entire stomach and the surrounding mucosa. A couple of biopsies were taken, so we'll see. My GI thinks I may have Celiac's disease, and is testing for that as well. Maybe I can start gaining weight rather than losing weight for once! 

And this is the power of medicine y'all (when it's properly practiced). If anyone is reading this and wants to be a doctor, if you're patient's symptoms have remained unexplained for years and months, maybe it's time to take of the illusion that these symptoms are all in the patient's head and start taking them seriously. I have nerve damage because of Vitamin B12 deficiency! That shouldn’t happen! Also, why the hell was I allowed to go my whole life with a low red blood cell count? And a low white blood cell count and low platelets? Like what happened to referrals or basic knowledge? If you've got a patient labeled with conversion disorder or hysteria or somatoform disorder of whatever dubious label relies on medically unexplained symptoms and the treatments for those disorders were ineffective of damaging, look back through their labs. I'm sure someone probably dropped the ball. All my new doctor did was look through my labs, and noticed all these abnormalities and went through the differential, and I've had a better quality of life as a result.

What they say is true, conversion disorder is a death sentence indeed. It nearly led to my premature death, and it has irreversibly damaged me. I would sue if I could, but medicine is a tricky discipline. Like my dad said, it's an art. So, people practice it in different ways and have different styles and skill levels. A lot of doctors are mediocre. They can handle simple patients and straight-forward patients. They don't like challenges and pass them on or worse slap down a label of conversion disorder without any psychological knowledge. There a few that are horrendous, and a few that are outstanding and have both the knowledge and bedside manner that one expects when they go to the doctor. And also some commendable ones who try to reach that upper 10% and know their weaknesses and strengths. Those docs are good too. They are the ones who refer you and are not afraid to say they don't know. 

So, in all it has been a mixed week. I've realized that I'm getting better and worse at the same time, but I enjoy life more. I'm savoring everyday in the best way that I can. It's the only way for me to live right now. The future is unknown at this point so what's the point in worrying about tomorrow? Once I get a diagnosis, if I get one, then I'll worry about it then. 

[chaosunmasked-blog]

The Holiday Spirit

You know your life is just GREAT when you need help the most, everyone deserts you. Take for instance my life. My body is just shutting down, and doctors are essentially telling me to stay away.

Doctors that I've seen for several years (DISSY): WE DON'T WANT YOUR KIND.

Me: But I've seen you for several years. If I don't have a primary care doctor, I don't have access to medical care.  

DISSY: WE DON'T CARE. And by the way, there's no way you should be on so many meds. You're an addict.

Me: What???? When did doctors get so unempathetic? Also, I have a complex illness that appears to be killing me and taking my systems down one by one. DUH, that's why I'm on so many meds. I'm not an addict you twits. I only want to live! Just call my specialists and they will confirm.  

DISSY: BYE. We don't even want to see those records. They're fake we're sure. Those prescription bottles from a well-known pharmacy chain, pfft. They're fake too.  No one so young can be so sick. Get off those meds! Go to rehab! Stop raiding your mom's pill cabinet! BUH BYE!

Me: Wow. Just wow. No wonder so many people die at this place.

My life as of today. So, I don't have a doctor anymore where I live in the middle of bumfuck somewhere because they don't believe I can be so sick. I mean just look at the Make-A-Wish kids. Some of them are sicker than me, and they're kids!

I never thought I would see the day where healthcare in the south is actually better than the north. People actually look at medical records down there and check up with doctors patients have seen. The doctors down there actually care about quality of life and don’t believe abnormal tests are laboratory flukes. (I actually have a lot of abnormal labs that have been ignored by these bumfucks.) Or maybe I have been seeing a lot of exceptions...  

Nevertheless this means that unless I find another primary care doctor here, I can't come back home for more than a month because many of my prescriptions are controlled substances. (Yes, I'm that bad off.) And those prescriptions are ones that I can't live without, literally.  But at least, this time I have a backup to save my ass for a couple of days until I can get back to the warm bosom of the south. (To think I even hated the place...)

But also what I realize today is what's worse than dying is watching your kids die. Yes, my parents are the ones who are truly suffering. In addition to having a daughter who at this rate will probably kick the bucket sooner than them is having a son who just destroyed his entire life trying to live life like a rich man and nearly being convicted of fraud. Yep. That's my little bro. Forged my dad's signature in front of a notary (most likely) in order to secure a lease on an apartment that's worth $96,000. Guess what. My family isn't that rich. Not in the slightest, and neither is my brother. We'll be lucky if the rental company doesn't turn him in.  

So, yeah. Being my parents suck. Seeing a son blow up his great career studying at one of the best schools in the US and working at a prestigious research center over a need to belong. His friends are among the one percent, and we are not. I've told him to stop pretending and to be himself. He has potential, and he may have destroyed it. It's a good thing my parents have had a lengthy divorce, at least my dad has experience in the legal system and can protect my bro for now.  

At this point, they may see the loss of their two children in the near future. It breaks my heart even having to hear about my brother's hijinks and combined with my failing health makes it even more heart-wrenching to know what my parents are dealing with. Both are also approaching retirement age so the stress is cranked up to 11 for both of them.  

But I'll do what I can as a sister and do my part to at least help my bro. I'm hoping to get in contact with a social worker to see what my options are to help him out. Even though my health is failing doesn't mean I can fail my brother. Goddammit, I still have a voice and can use a cell phone.  

The holidays are just great and keep getting better. I hope I don't have to spend it looking at my bro through metal bars in a wheelchair and telling him how much he has disappointed me this year. My family needs a Christmas miracle to make it out of 2016 intact.  

[chaosunmasked-blog]

Here I am.

Hello Tumblr. And everyone else. I'll introduce myself in this first post. I'm a woman from the middle of bumfuck nowhere going to school in the middle of bumfuck somewhere.  

Today I have decided that I should come out of the closet about my condition. (I'm a firm believer that homosexuals should not have a monopoly on this dramatic literary device. Come on has anyone heard of the phrase, "skeletons in your closet?" The only skeleton isn't homosexuality by the way. I'm not a lesbian if you're asking...though if I were one, I would have hit the romantic jackpot with my looks.) Diverting back to my original train of thought... so I have a chronic illness that was once visible and then became invisible except if you catch me after mealtimes trying to stuff pills down my throat inconspicuously. Yep, that never went well. But, it was invisible for a couple of years. I was able to portray the strongwoman image for a while. Jobs that involved manual labor became a side thing in college for me and then a real job a couple months later because I loved physical activity. Yeah, I was skinny, but I was strong. Lifting loads over 50lbs. And I was also smart. I went to college for free studying mechanical engineering. Second year was not so free hence the job, but I eventually grew to hate it. I traveled around Europe for a bit and finally earned some money to make a second go at college and pay down some of my debts.

During this time, I continued to get worse, but in small ways. It wasn’t noticeable to anyone but me, and my doctor told me it was stress. So, I lived the most stress-free life possible. I lived my dreams. I went to school for a second time to become the cinematographer that I had always wanted to be. It went well for a few weeks, then I had a flare-up. Cover. Blown. I collapsed outside of my classroom imagining delving into a mound of ice-cream for my celebratory feat of working on my first film set while juggling two projects over a weekend. Needless to say I didn't manage to buy any ice-cream. However, I did manage to get better rather quickly and resume my charade of pretending I was as healthy as a horse.

I was planning on taking it easy after this flare-up as I usually do, but my doctor had other plans. He wanted me to jump right back into exercising. I did protest, but he insisted as it would be the fastest way to get better. So, I decided why not? There's nothing really wrong with me except dystonia-that's-not-really-dystonia. Yeah, let's throw caution to the wind. I did, and I became extremely sick. So, sick that to this day I haven’t been able to get back to my norm.  

After eight months and some change, it appears that I may actually be dying. Doctors are telling me instead of being overstressed as my reason for my symptoms, they can't do anything. And part of that is because I've tried everything before my first successful treatment. Psychotherapy in all it's forms, (Biofeedback, hypnosis, medication, talk therapy, etc.) physical therapy and medications. Sinemet, a form of synthetic dopamine allowed me to get back on my feet about a year and a half after I first fell seriously ill, but since then has faded in its effectiveness. I've tried anti-Parkinsonism drugs as well, which made me go all kinds of crazy.(I had some symptoms of that too, so the doctor thought why not  give that a try.) I don't blame them. At least they tried.  

Now, I've gone to the Mayo Clinic to try and get some help. The neurologist that I was referred to thought I was a simple case. Go off of the Artane and you'll be sane again. Also, possibly you have Dopamine-Responsive Dystonia and Fibromyalgia. Unfortunately, it wasn't that simple. The rheumatologist told me that I don't have fibro and my lab results are coming back all sorts of weird. On my return visit to the Neurology department in which I saw a Nurse Practitioner who seemed more interested in starting a romance with my dad than telling me what my next steps are basically told me my body is shutting down. Her reason: I didn't fight hard enough to overcome my fatigue and pain.  

Hahahaha, if this lady actually knew what I had to go through and what I went through she wouldn't have said that to me. I fought hard to finish the quarter this year. I was up on caffeinated sodas and coffee to try and keep me awake long enough to finish my assignments and attempted to pull a few all-nighters. (There's nothing like two days in which your tear glands stop working, resulting in severe eye pain to put you behind on homework.) Also, the most I could go was till 11:30 despite my best attempts to stay up all-night. All the Coke in the world couldn't prevent me from falling asleep at that point. Also, I was tripping balls because of my med (Artane). Half the time, I couldn't believe what was in front of me. Hey lady, try turning out two projects while people are splitting in half and turning into green aliens, glancing at your watch a realizing 3 hours and not 10 minutes have passed all the while thinking that you were productive and trying to piece back the hours hoping you haven't accidentally destroyed property or killed anyone, and I would like you to try and pass a test when your mind is like a sieve and all the info you have learned you forgot. Yep, I lost my short-term memory too. It was great when people I met the day before or a few days before said hi and I totally forgot who they were.

Yep, I was totally lazy and did nothing during the past month at school. Yep, totally. She also admitted that she did not consult with the neurologist that I saw beforehand, but determined based on the fact that she didn't have a diagnosis to tell me that I had medically unexplained symptoms. It was clear that she also failed to read my chart so I knew she was spitting bullshit. I guess that's why flirting with my dad became her main preoccupation. She would have better luck gaming him as a romantic partner than assuaging my fears. But no worries, the increasing stiffness I was experiencing was of no consequence to her, which landed me in the emergency room. Moving around has the unfortunate consequence of making my muscles stiffer, and it became so severe that I could not move. They gave me Valium, but only to take it if my stiffness required it. So, needless to say, it still progressed to the point where it was an extreme effort to walk less than 100ft, and necessitated sleeping 17 hours a day, at that point I called my neurologist back in bumfuck somewhere and she gave me Baclofen which at least got me back to the functioning I had when I went to the Mayo Clinic.  

It seems like the Mayo is still working on me, and they haven't called me back about all the abnormalities that keep pilling up like Lake-Effect snow in the middle of January. I still have extreme fatigue that makes even typing this a feat of the ages for me. I spend a lot of time in bed lately since I don't have to force myself awake with insane amounts of caffeine. I can wait to abuse my body for at least a few weeks.  

If I had told her all of that, she probably would have recommended hospice care. I mean, my organs are shutting down and no one has identified a cause. Also, if she hadn't been trying to woo my dad, pure laziness does not cause organ failure. Before my lucky run in with the first neurologist who tried Sinemet, I was the image of laziness, but my organs were far from shutting down. Labs came back normal. Jump into the present (four years later) where I am trying my dardnest to keep up with my classmates and have to walk several hundred feet a day,  my organs are failing.  

I already know my GI track stopped working. In order to get it moving I have to take laxatives. If I don't, I'll lose weight and die. If the laxatives stop working, then I probably have to get a feeding tube if sepsis doesn't come and claim me first. I really don't know who can live without their intestines. So, just saying that doesn't surprise me at all. I just want to know why.

Also, ridiculously power struggles over who has me as a primary really needs to stop. I've decided to start writing today because my health care provider of six years has decided that they can't work with me if I have a primary care doctor in another state, where I go to school. It is strange because they've known about him for eight months, so why is there a problem now? Also, I've refilled a prescription with them last week that was controlled, because controlled substances can't be prescribed across state lines, but now I can't get another script for a medication that is also controlled. At this point, it's ridiculous. They want me to transfer my records to this other doc because all of a sudden I can't have another provider in another state. Bullshit. What is really happening is that no one wants their health metrics to go down, so they pass the buck to another person. Here. Have the dying girl, we have too many people dying here already. It's also not a coincidence that this happened after I gave them the results of the tests that confirmed (according to the NP) that I'm dying.  

Honestly, back to the NP, I can't blame her for giving me middle of the road news. I mean, what father would start a romantic relationship once he knew his daughter was dying? She would have a better chance with this. Also, people who come out-of-state to the Mayo Clinic have already seen multiple doctors so the, "you'll improve with time shtick" wouldn't fly with me or my parents.  

So, yeah, I'm out here. On the webs, proclaiming my chronic illness. Anonymously. At least it's a step. In real life, I can't hide it anymore. I walk with a walker. And inconspicuously taking my meds at mealtimes is a joke. I have so many pills to take throughout the day, my backpack sounds like a maraca when I walk. So, fuck that secret. In all honesty the closet, I'm coming out of has already had the door broken in, all I had to do was kick the debris down and let the sunlight in.  

Despite all of this, I hope the folks at the Mayo Clinic will be able to help me out. I hope they'll be able to find someway of curing me or at least treating me and giving me my life back. But we'll see. I just hope at the very least my doctor at home will grow a heart for the holidays and not leave me suffering this Christmas because they didn't want to refill my muscle relaxant or have another dying girl on their roster.