At what point do you declare yourself insane for doing the exact same thing over and over again without results? Where does persistence turn into complete and utter lack of a sane thought? This is how I feel tonight, basically like I'm walking in a circle in life and I'm not changing anything but expecting things to change.
Here's some stats for you folks, who like statistics. I may have missed a few, but the overall list starts in Sept which is as far back as I decided to go.
Sept: 20 jobs applied. 5 phone interviews. 3 inperson. 1 job.
(Worked for a day before let go due to background problems)
Oct: 16 jobs applied. 3 phone interviews. 1 inperson. 0 job.
Nov: 24 jobs applied. 6 phone interviews. 1 inperson. 0 job.
Dec: 4 jobs applied. No phone or inperson interviews scheduled.
-Every job I have applied for: I have experience (or more) that matches the experience of the job.
-Every job I have found via personal connections OR through indeed.com in general.
-Phone interviews were all very hit/miss. Some go extremely well and result with an in-person interview. Some are atrocious and it's just my inability to get past the bad interviewing tactics.
-Every inperson interview I have attended, I have received compliments on both my resume and my skillset.
-I have been told everything from "You'll be bored in this position", to "You have the experience we want, but we can't hire you due to x,y,z" to "You should hear from us within a week or two".
-I use indeed.com because of it's ability to filter out clearance and polygraph jobs. I am most certain my past late-teenager life will prevent me from getting these positions and I don't like to entertain those recruiters.
I will rant, and only briefly about why this is a huge problem other than the obvious reasons. I am a high energy high performer at everything I do. I thrive on knowledge, I thrive on making things work and making business run smoothly. You know why I thrive at it? Because I enjoy solving problems!
This is a problem that I'm having an issue with. Why is it, someone who is complimented on his resume, is personable, runs into so many connections who have "potential leads" is it December, and he is still jobless? What am I doing wrong? What am I doing right? What should I change? The worse part of job search is the lack of feedback. Places just don't care enough to provide you with feedback. They don't give any fucks about your timeframe, the fact you aren't meeting bills. They have more important things to worry about. So here's how my life has been living on repeat for the last week.
I find a job opportunity either via someone I know, or via indeed.com.
Via person:
-I send my resume, with a nice note in an email regarding my interest and wanting to know more about the role.
(Usually receive replies within business 1-3 days)
-I receive email usually with job description and then after my initial reply, usually someone from HR sets up a phone call.
(Phone interview is setup usually 2-5 business days away)
-I speak with someone in HR who tells me about the company, and about the role- no real technical information or answers to my technical questions. But can answer for me questions about the company, the background policy, and other benefits questions
-HR passes me along to the hiring manager, usually for a tech interview.
(Tech interview takes 2-4 business days to setup, usually)
-Tech interview has usually been landing me an inperson interview. There have been three instances when tech screenings have not went well. (I will touch on that later)
-Depending on company, they want to meet for an in-person interview with multiple people, several hours.
(In-person takes between 1-3 business days, at most 2 weeks)
-Interview goes well. At the end of every interview I ask for feedback about the interview, my resume, or any general feedback people can give me. I always receive positive feedback regarding my level of experience or my resume. Sometimes too high of a praise (you'll be bored here!)
-I follow-up within 1-2 days of interview thanking interviewer for their time and tell them about my excitement for the role.
-I wait. Days/weeks/months go by. I am not exaggerating. Oracle took an entire month to tell me they went with someone else, even with me harassing the HR lady every single week, multiple times. Another company took an entire month before they wanted to "offer me" a job. That was the job that lasted one day.
-Sometimes I receive a formal denial, most times they just never contact me again. Some even give me automated responses.
Total time involved between apply/deny: 8-15 business days after applying before I hear back - and anywhere from one week to two months to get denied.
15 business days = 3 weeks
Via Indeed:
-I see a job and look at requirements. Apply using indeed resume unless they have corporate email listed then I place the title of the role in the subject line and then email my resume directly.
-I get an automated email usually from the company and from indeed if I apply directly through them.
(Email is right away from automation)
-Usually, a recruiter will reach out to me about a role. Most of indeed seems to be the same dozen or so recruiting firms. Some times it's a direct company hiring, but that's infrequent.
(Usually hear from recruiter within 1-5 business days)
-Recruiter sometimes wants to interview me, so he'll setup a meeting via skype/phone/in-person. [I've stopped doing recruiting in-person interviews, because they require gas, parking, and usually are meaningless]
(usually between 2-5 business days away).
-Recruiter then discusses internally with their middle management, to see if they want to submit my resume. They decide to submit my resume to the company.
(Confirmation they submitted me - after 1-3 business days)
-Recruiter reaches back out to have me schedule a phone interview for screening, with HR
-Phone interview happens with HR or management
(For time sakes - we'll say anywhere from 1-5 business days have passed)
-Management / HR meeting, and maybe a phone screening with technical team
(Organizing this meeting takes 1-5 business days)
-In-person interview is setup with various people from company and I
(Organizing this meeting also takes 1-5 business days)
-Company says they will contact me via recruiter. I usually hear back:
(1-5 business days)
-Opening gets filled with other candidate, and I get very minimal feedback from the recruiter. Often I won't even hear back from the recruiter.
Some of the feedback is: they went with someone else. We're not sure. They said you didnt have xyz experience, even though they didn't tell us that was a requirement. They went with someone more qualified. The just picked someone else. The job role became unavailable - they went into a hiring freeze.
Total time involved between apply/deny: 7-28 business days.
28 business days = 6 weeks.
Outcome? Yep-still jobless.
I've done this song and dance through easily three dozen interviews in the past 6 months. (I started looking before I was laid off). I've attended many hours of interviews. Always dressed nice and presentable. I've worked really hard at presenting my background, my expertise, and overall my friendliness.
So at what point do you throw the towel in the fight? At what point do you stop walking forward and stop to check directions, search for landmarks, look for the sun? I'm not sure what I can do at this point. I can't exactly jump out of this life I am in. I can't live the way it's moving right now. I figure I'm about 2 weeks from hard decisions and starting to pack/sell everything I own. As of today I have one interview from last week that went well, and 3-5 jobs I've applied for that have decent promise of knowing someone who works there. Referrals are the best ways to find a position. Problem is trying to a relationship or understanding with someone via a 30 minute technical interview is a joke. I often times get cut off trying to ask some simple questions about the expectations of the job and the responsibilities. People don't make enough time for interviews. Companies don't give a shit about your time. They don't give a shit about your life. They want you to work till you die, or get burnt out and quit, and then they want to find someone else to work in your place, because I am certain that the number of applicants that are received per job listing is in the hundreds if not thousands per week.
So why would a place hire me? Well, basically the last 7 years of my life has been putting myself through college with a 4.0gpa, getting my life together with a career, and building that career as rapidly as possible. I thrive on knowledge, understanding, solving problems, and the continuing stride towards fulfillment in work and life alike. I want to work for someone who has meaningful work and I want to be challenged. Of course right now I just want to pay bills and not live out of a shoebox.
Why don't I go into business for myself? Quite simply put. I don't have any funds to sustain that. I don't have clients to fulfill that ability. More importantly, the medical insurance that I require would cost me too much money. The schedule would be flexible but I would need to get out there and do stuff and would not be able to bring in the same kind of money I was. I'd still be in a tight spot.
So what do I change? I am not sure. Am I just on a boat, in a stream of bad luck with a broken paddle in the rain as it starts to hail and my backpack gets thrown off the side of the boat, while a crocodile tries to eat me?
Life: why you do this! I am trying to make my life meaningful. If I have to start over at rock bottom I am going to lose my mind!
Am I insane? Einsteins version of insanity was doing the same thing over and over again expecting different results. Am I far off here?
Wednesday, December 2, 2015
Thursday, November 12, 2015
I'm a little overdue.
I've been out of work now for over 3 months.
In that timeframe I've done way too much thinking.
That means this is going to be heavy.
This is going to be deep rooted.
Unfiltered (mostly) ramblings.
Stable mentally, but thoughts betray those words.
...
...
...
...
Okay fine keep reading, I tried to warn you.
I'm overdue for the motivation it takes to deal with this illness.
Every day of our lives we're faced with problems. Whether it's small or big, whether it seems hopeless or whether it's cut and dry, the problems do not go away just because we don't have the motivation or energy. It gets worse sometimes if you neglect your duty to figure out the solution to life's toughest problems. I type this with 40 cm of tube (a piccline) in my arm, at 2 in the morning, after attempting to organize my brain and make sense of what I've been doing to myself all these years. I type this from another huge drastic change in my health, only noticeable when I hit the bottom. It's such a gradual decline I've been tricked into thinking it normal. In general, I see my lung function drop over time and feel hopeless. How can I fight against this uphill battle? That's the easiest metaphor that everyone can understand.
I'm overdue for some sanity.
My whole life is sometimes a cruel joke. I'm quite numb to it after all these years but it still insists on showing me exactly how uncontrollable it can be. I worked hard to put myself through college. It paid off in an internship under a good supervisor who tried to gear me towards this awesome worker/manager/superITguy. It worked, mostly. Then... I moved on soon after changes in management happened. I worked for 5 years, spending easily triple the amount of time working than taking care of my health - those precious lungs of mine. I was always active, I had low health management, and it was "fine". I was f.i.n.e. FINE is a big joke. I wasn't fine. I'm losing lung function in my later 20s much faster than I should be. Doctors tell me everytime I go there. I am now, with 5 years of experience still struggling for a job, in the most hire-able field in this decade. IT work was supposed to be stable. I need a balance of health and life. Health needs to come first. I need to focus on my health, so I can be here to yell at people in my 40s about how they abuse their lungs and it pisses me the fuck off. Wait, that's not right. I need to be here to see others succeed around me, maybe to have some kiddos looking up to me succeeding. Parents live for their kids (the good ones), what do non-parents live for? Themselves or other people? I see people around me confused, and constantly wondering when I'm going to "feel better". As if such a simple thing was achievable by a mere few days of drugs. There are no solutions to the problems, just a bunch of short term fixes. This will take time. This will take patience. This cannot drive me insane.
I'm overdue for a career change.
IT is great, it provides me with distraction, and pays me well for it. That distraction allows me to believe I live a mostly non-cf-plagued life. At least in the open, where people can see and hear - they see a motivated individual who works hard for the goals of the company. I thrive for challenges that actually have answers. In my world, that few actually see, I struggle to keep things moving. I see my health suffer and can't balance. The workforce of this country does not allow for weak people. Nobody wants to pay you to make your own hours and work your ass off, they want to pay you for 3 hours of work in a cube, and 8 hours of your life spent there. They are not willing to bend. Who will break first? It won't be them. The job market is so saturated that I am literally just a name on a paper, on a pile of papers, in an office full of stacks of papers. I need an exit strategy before I work myself into a more-early death..
I'm overdue for the courage to fight, as hard as I can, to do something meaningful in life
I'm overdue for a break from this madness. I'm sick of being knocked back, having to start over.
I'm long overdue for some sort of hope, some positive emotions from my brain - in whatever form.
I'm overdue for being able to breathe without wheezing. I'm overdue for a real pair of lungs.
...
...
...
It gets better.
I'm overdue for optimism
The rest of this nonsense life of mine is a giant puzzle without one hand, and with a 3 dimensional table with constant-changing-gravity that forces me to pick up the pieces more than actually put the thing together..
Yoga w/ pranayama breathing I think is key to some sort of mental/physical exercise. And being able to monitor my health, would help some I think.. Constant, friendly, positive reminders. Focus. Less distractions and more ability to focus on the things that matter.
I am sick of people telling me what to do, I want them to show me. Show me struggle, show me your pain, and show me how you deal with it. Give me motivation. I want to strive to be better, show me how. Stop telling me WHAT to do, and just show me HOW. Empty suggestions are not helpful. I've dealt with this negativity so long, one little suggestion isn't going to light up an entire castle of darkness. It requires much more light. If you want to light up the darkest dungeon, you need much more than one bright lightbulb of an idea...
I need to figure out a long-lasting self-producing-promoting career. I think web development is key. It's easy, I have a background, I can begin almost immediately, and I can grow. I need to drop the other nine billion things and focus. It's tough, obviously. I have a sense of want to thrive as much as I can, and I know my work will reflect it however I need that opportunity to do so. I need to breathe, easier. I am sick of carrying the weight on my shoulders. There's nothing I can do with all this pressure but collapse or succeed. I've always told myself succeeding is the only option, and I don't plan to change that now.
I need to make a difference to make this life worth a damn. I won't struggle to breathe my entire life only to come up short on making a difference. I won't go through this struggle to not achieve anything, to not help anyone else through it. I will do something. I just don't know what that is yet.
In that timeframe I've done way too much thinking.
That means this is going to be heavy.
This is going to be deep rooted.
Unfiltered (mostly) ramblings.
Stable mentally, but thoughts betray those words.
...
...
...
...
Okay fine keep reading, I tried to warn you.
I'm overdue for the motivation it takes to deal with this illness.
Every day of our lives we're faced with problems. Whether it's small or big, whether it seems hopeless or whether it's cut and dry, the problems do not go away just because we don't have the motivation or energy. It gets worse sometimes if you neglect your duty to figure out the solution to life's toughest problems. I type this with 40 cm of tube (a piccline) in my arm, at 2 in the morning, after attempting to organize my brain and make sense of what I've been doing to myself all these years. I type this from another huge drastic change in my health, only noticeable when I hit the bottom. It's such a gradual decline I've been tricked into thinking it normal. In general, I see my lung function drop over time and feel hopeless. How can I fight against this uphill battle? That's the easiest metaphor that everyone can understand.
I'm overdue for some sanity.
My whole life is sometimes a cruel joke. I'm quite numb to it after all these years but it still insists on showing me exactly how uncontrollable it can be. I worked hard to put myself through college. It paid off in an internship under a good supervisor who tried to gear me towards this awesome worker/manager/superITguy. It worked, mostly. Then... I moved on soon after changes in management happened. I worked for 5 years, spending easily triple the amount of time working than taking care of my health - those precious lungs of mine. I was always active, I had low health management, and it was "fine". I was f.i.n.e. FINE is a big joke. I wasn't fine. I'm losing lung function in my later 20s much faster than I should be. Doctors tell me everytime I go there. I am now, with 5 years of experience still struggling for a job, in the most hire-able field in this decade. IT work was supposed to be stable. I need a balance of health and life. Health needs to come first. I need to focus on my health, so I can be here to yell at people in my 40s about how they abuse their lungs and it pisses me the fuck off. Wait, that's not right. I need to be here to see others succeed around me, maybe to have some kiddos looking up to me succeeding. Parents live for their kids (the good ones), what do non-parents live for? Themselves or other people? I see people around me confused, and constantly wondering when I'm going to "feel better". As if such a simple thing was achievable by a mere few days of drugs. There are no solutions to the problems, just a bunch of short term fixes. This will take time. This will take patience. This cannot drive me insane.
I'm overdue for a career change.
IT is great, it provides me with distraction, and pays me well for it. That distraction allows me to believe I live a mostly non-cf-plagued life. At least in the open, where people can see and hear - they see a motivated individual who works hard for the goals of the company. I thrive for challenges that actually have answers. In my world, that few actually see, I struggle to keep things moving. I see my health suffer and can't balance. The workforce of this country does not allow for weak people. Nobody wants to pay you to make your own hours and work your ass off, they want to pay you for 3 hours of work in a cube, and 8 hours of your life spent there. They are not willing to bend. Who will break first? It won't be them. The job market is so saturated that I am literally just a name on a paper, on a pile of papers, in an office full of stacks of papers. I need an exit strategy before I work myself into a more-early death..
I'm overdue for the courage to fight, as hard as I can, to do something meaningful in life
I'm overdue for a break from this madness. I'm sick of being knocked back, having to start over.
I'm long overdue for some sort of hope, some positive emotions from my brain - in whatever form.
I'm overdue for being able to breathe without wheezing. I'm overdue for a real pair of lungs.
...
...
...
It gets better.
I'm overdue for optimism
The rest of this nonsense life of mine is a giant puzzle without one hand, and with a 3 dimensional table with constant-changing-gravity that forces me to pick up the pieces more than actually put the thing together..
Yoga w/ pranayama breathing I think is key to some sort of mental/physical exercise. And being able to monitor my health, would help some I think.. Constant, friendly, positive reminders. Focus. Less distractions and more ability to focus on the things that matter.
I am sick of people telling me what to do, I want them to show me. Show me struggle, show me your pain, and show me how you deal with it. Give me motivation. I want to strive to be better, show me how. Stop telling me WHAT to do, and just show me HOW. Empty suggestions are not helpful. I've dealt with this negativity so long, one little suggestion isn't going to light up an entire castle of darkness. It requires much more light. If you want to light up the darkest dungeon, you need much more than one bright lightbulb of an idea...
I need to figure out a long-lasting self-producing-promoting career. I think web development is key. It's easy, I have a background, I can begin almost immediately, and I can grow. I need to drop the other nine billion things and focus. It's tough, obviously. I have a sense of want to thrive as much as I can, and I know my work will reflect it however I need that opportunity to do so. I need to breathe, easier. I am sick of carrying the weight on my shoulders. There's nothing I can do with all this pressure but collapse or succeed. I've always told myself succeeding is the only option, and I don't plan to change that now.
I need to make a difference to make this life worth a damn. I won't struggle to breathe my entire life only to come up short on making a difference. I won't go through this struggle to not achieve anything, to not help anyone else through it. I will do something. I just don't know what that is yet.
Friday, January 9, 2015
Incoming Rant - Following Doctors Recommendations
Incase you have not figured out yet, I have Cystic fibrosis. This rant is pertaining to that.
I need to rant about this, perhaps you will agree or disagree, either way I recommend you follow doctors recommendations, as they are your doctors. Do not do so blindly, because at the end this is your body and you need to be realistic with what you are doing to help better yourself.
Recently I filled out a form where the doctor got to provide input on how medication compliant I am (among other things). 10 was the best, and I scored a 2/10.
Two out of ten. So basically there are worse people that are compliant than I am, but not by much. Let's review how I feel about this. Firstly, I think it's a stupid scale and it should have doctor feedback as well as patient feedback for this, as there may be a valid reason for not listening to what the doctor says blindly.
So here's my reasoning.
I have two gene mutations which are rare. Both mutations put me into a 10% or less bracket of symptoms and life than anyone else with CF. I am more fortunate than most, I can work a fulltime job, I can do things as if I'm basically healthy and "normal". (I don't use the word normal often, but i think it fits here). So given that I've done a small subset of research on my illness, and the 2 mutations that I have, I consider myself a little educated on the subject. Just slightly, given the research I have seen and what information has been presented to me.
I have 2 genes that put me into a weird bracket of CF. There's no real treatment *yet* for per-gene therapy. Kalydeco is the first that has come to the market to offer a solution to specific genes. Hopefully it's the first of many. Current meds for "CF" as bundled as we are, are basically put onto the market after given studies to various gene types and up till now have basically been for preventative maintenance. There's no promise that taking these medication regime will help or delay the failure of my lungs or the decline of my lung function, but since research has proved that they do something, they have been released onto the market about 5-10 years ago roughly. I could look up exactly but for this rant, I'm not sure anyone is going to be fact checking here.
Every time a doctor recommends something or a nurse harasses me about the doctors recommendation I just want to scream. Has this been proven for my genetic mutation? No probably not since my genes are rare. They have been proven to help on wide range of mutations though, so it should help... That's basically the answer I receive. There's basically no gene by gene researching going on. There are classes of genes which I have recently learned about, which potentially could help this medication debacle and problematic "medication taker" that I am, I think it would be good to classify things as such.
Am I seriously the only person who refuses to do anything blindly? Firstly, I respect professionals opinions, and I am always nice to everyone I speak with or see. I can appreciate the advice of someone who is dealing with people with similar illness. I can always appreciate the quality of care I receive as well. However I am not just going to put anything in my body without researching first, and I'm not going to just "listen" to anything you say. Statistically it's very unlikely that there are many people with either of my genes. It's probably even more rare that there's someone with both genes that I have. So you expect me to basically listen blindly to everything you are recommending, when 90% of the people you recommend things to have the same genes, and I do not.
Am I in the wrong here? Nurses seem to think it's okay to basically talk down to me in regards to my "treatments" when I tell them how few medications and treatments that I am on. I call in because I have caught a cold, they ask me what I'm doing, I tell them, its basically like I'm shooting myself in the foot. They tell me I need to be doing x,y,z. I don't even argue anymore I just accept that they have this set of bullshit for every CF person and I have to pick and choose what I think will work best for me.
I tried. I've tried so many times to work into my life this "regimen". This is what my day would look like if i were to do everything that was told to me.
7am: wake up.
705: take inhaler and wait 15mins
720: take hypertonic saline (20min treatment)
740: wait 15 minutes after HTS to do breathing exercises
755: Either use the vest for 30minutes, or breathe into this device that basically helps break down the mucus for about 15 minutes
810: Inhale tobe - 10~ish minutes
820: After airway clearance ^ , do another breathing treatment of Pulmozyme (10~ minutes)
830: Finally start getting ready for work?
And then basically the same thing in the evening. So approx. 3 hours of my life, everyday, to treatments. I love when they tell me to do something THREE Times a day, so somehow I have to fit that into my schedule. I once had a nurse ask me if I could do a neb while driving in the car.
Don't enough people do shit while driving that they shouldn't? Is my car self driving? What about the shifting because I drive a manual? When do I have time for breakfast exactly? (not that I'm much of a breakfast person anyways)
So the reality of this rant is that, no I'm not spending 3 hours of my life everyday to do things that COULD potentially help my condition. I have absolutely no problem doing something that is relevant to my gene-type. But if you're really going to just tell me to do something (and harass me when I don't in the form of talking down to me) without providing accurate data to me, it's going to get overlooked and not going to happen. Why? Because it's simple. Less than 10% of people have one of my genes. I sincerely doubt that makes up much more than a few people per large city, since the CF centers are in the large cities i'll use that as my benchmark here. So less than a few people, and somehow we're all supposed to be good little people with CF who follow every order the doctor gives us.
Present me with data pertaining to my genes, and I will happily oblige. Till then I'll put up with the downtalking on the phone, and the 2 out of 10 rating they provide me with. Why do I even bother goign to the doctors exactly? Oh right, because maybe one day they can prescribe me a medication that actually helps the problem with my illness and not the symptoms. As a society we take too much and learn too little. I'm not going to feed into that or get anymore into that.
That is all, /endrant.
I need to rant about this, perhaps you will agree or disagree, either way I recommend you follow doctors recommendations, as they are your doctors. Do not do so blindly, because at the end this is your body and you need to be realistic with what you are doing to help better yourself.
Recently I filled out a form where the doctor got to provide input on how medication compliant I am (among other things). 10 was the best, and I scored a 2/10.
Two out of ten. So basically there are worse people that are compliant than I am, but not by much. Let's review how I feel about this. Firstly, I think it's a stupid scale and it should have doctor feedback as well as patient feedback for this, as there may be a valid reason for not listening to what the doctor says blindly.
So here's my reasoning.
I have two gene mutations which are rare. Both mutations put me into a 10% or less bracket of symptoms and life than anyone else with CF. I am more fortunate than most, I can work a fulltime job, I can do things as if I'm basically healthy and "normal". (I don't use the word normal often, but i think it fits here). So given that I've done a small subset of research on my illness, and the 2 mutations that I have, I consider myself a little educated on the subject. Just slightly, given the research I have seen and what information has been presented to me.
I have 2 genes that put me into a weird bracket of CF. There's no real treatment *yet* for per-gene therapy. Kalydeco is the first that has come to the market to offer a solution to specific genes. Hopefully it's the first of many. Current meds for "CF" as bundled as we are, are basically put onto the market after given studies to various gene types and up till now have basically been for preventative maintenance. There's no promise that taking these medication regime will help or delay the failure of my lungs or the decline of my lung function, but since research has proved that they do something, they have been released onto the market about 5-10 years ago roughly. I could look up exactly but for this rant, I'm not sure anyone is going to be fact checking here.
Every time a doctor recommends something or a nurse harasses me about the doctors recommendation I just want to scream. Has this been proven for my genetic mutation? No probably not since my genes are rare. They have been proven to help on wide range of mutations though, so it should help... That's basically the answer I receive. There's basically no gene by gene researching going on. There are classes of genes which I have recently learned about, which potentially could help this medication debacle and problematic "medication taker" that I am, I think it would be good to classify things as such.
Am I seriously the only person who refuses to do anything blindly? Firstly, I respect professionals opinions, and I am always nice to everyone I speak with or see. I can appreciate the advice of someone who is dealing with people with similar illness. I can always appreciate the quality of care I receive as well. However I am not just going to put anything in my body without researching first, and I'm not going to just "listen" to anything you say. Statistically it's very unlikely that there are many people with either of my genes. It's probably even more rare that there's someone with both genes that I have. So you expect me to basically listen blindly to everything you are recommending, when 90% of the people you recommend things to have the same genes, and I do not.
Am I in the wrong here? Nurses seem to think it's okay to basically talk down to me in regards to my "treatments" when I tell them how few medications and treatments that I am on. I call in because I have caught a cold, they ask me what I'm doing, I tell them, its basically like I'm shooting myself in the foot. They tell me I need to be doing x,y,z. I don't even argue anymore I just accept that they have this set of bullshit for every CF person and I have to pick and choose what I think will work best for me.
I tried. I've tried so many times to work into my life this "regimen". This is what my day would look like if i were to do everything that was told to me.
7am: wake up.
705: take inhaler and wait 15mins
720: take hypertonic saline (20min treatment)
740: wait 15 minutes after HTS to do breathing exercises
755: Either use the vest for 30minutes, or breathe into this device that basically helps break down the mucus for about 15 minutes
810: Inhale tobe - 10~ish minutes
820: After airway clearance ^ , do another breathing treatment of Pulmozyme (10~ minutes)
830: Finally start getting ready for work?
And then basically the same thing in the evening. So approx. 3 hours of my life, everyday, to treatments. I love when they tell me to do something THREE Times a day, so somehow I have to fit that into my schedule. I once had a nurse ask me if I could do a neb while driving in the car.
Don't enough people do shit while driving that they shouldn't? Is my car self driving? What about the shifting because I drive a manual? When do I have time for breakfast exactly? (not that I'm much of a breakfast person anyways)
So the reality of this rant is that, no I'm not spending 3 hours of my life everyday to do things that COULD potentially help my condition. I have absolutely no problem doing something that is relevant to my gene-type. But if you're really going to just tell me to do something (and harass me when I don't in the form of talking down to me) without providing accurate data to me, it's going to get overlooked and not going to happen. Why? Because it's simple. Less than 10% of people have one of my genes. I sincerely doubt that makes up much more than a few people per large city, since the CF centers are in the large cities i'll use that as my benchmark here. So less than a few people, and somehow we're all supposed to be good little people with CF who follow every order the doctor gives us.
Present me with data pertaining to my genes, and I will happily oblige. Till then I'll put up with the downtalking on the phone, and the 2 out of 10 rating they provide me with. Why do I even bother goign to the doctors exactly? Oh right, because maybe one day they can prescribe me a medication that actually helps the problem with my illness and not the symptoms. As a society we take too much and learn too little. I'm not going to feed into that or get anymore into that.
That is all, /endrant.
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