To Your Health

Living with a mental illness and being accident and illness-prone leave you spending long hours in doctor’s offices, in waiting rooms, in line to get your third CT this year or more “routine” labs, at the surgeon’s, at the medical supply company.  And then there’s the routine stuff — the dentist, pdoc appointment, therapy over phone, therapy in person, renew prescription, flu shot, ear infections, the dentist again.

You get the point and I am personally at a point where it feels like all I do is talk to medical and mental health professionals who prescribe tests and medication and specialists.  While all of this does aggravate me (obviously), I am grateful that I have good health insurance.  When I sigh about heading to the next appointment, I think to myself, ‘well at least I can, I have that option.’

I’m not sure what I’d do if I didn’t have any insurance.  I would probably be dead, with two broken feet.  No access to mental health care is unthinkable, unacceptable to me — as someone who has worked on the inside of the system and been a customer on the outside — because it is absolutely vital to many persons, even in a city this size, that meds, therapy, community support saves lives and improves lives and can in many cases make all the difference.

I picture me unmedicated, with my broken foot not in a cam walker, with all the gastro problems of the last year unsolved, no flu shot, no antibiotics for all the ear infections, and so on and so on and, well — I actually can  picture that.  I think you have to live the life of the uninsured or underinsured to really feel the strong pull for healthcare, that desire we all have to be (mostly) well, physically and mentally).

I spent years being underinsured and racking up credit card debt and owing debt to my parents just to pay for my medications.  Then a program was found and it turned out that if QoB laid enough battle down, she could get me on this program.  I’ve been on it for quite a while now, and have since never had to worry about prescription drug cost or what would happen if I broke my foot (again).   And now that I am on SSDI and have two years in, I just started Medicare which will improve my treatment options quite a bit.

What I want to know is — why is it that you must be disabled or elderly before you can get some really good insurance working for you?

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Remembering as a Way to Start NaBloPoMo 2014 — Be a Pepper

The following post is actually a page on my blog that describes my journey with Bipolar I, PTSD, and Eating Disorder NOS.  At the start of NaBloPoMo, November 1st, I want myself and anyone reading to be reminded that mental health recovery is a life-long process.  I am currently going through a very difficult time, as indicated in the posts prior to and after this one will show.  And lately I have given a lot of thought to giving up, and then I read this and was reminded how far I have come.

The Story and the Stigma

Throughout grade school, middle school, and high school, I earned top grades.  I wasn’t the valedictorian, but I gave the high school commencement address, and I rocked it.  People on the outside saw a high-achieving, confident person.  Inside, I was fighting bipolar disorder, crushing anxiety, and an eating disorder.  No one knew, and I didn’t tell them.  I was afraid of what people would think.

When I went off to college, I went somewhere small, about an hour away from home, with the unsaid statement that I couldn’t go far away and succed; not without support.  Not without trips home every weekend.  I accepted it, and as time went on, I learned they were right.

I excelled at this small college, changing my major from pre-med to psychology after a horrific first semester in science classes that I couldn’t wrap my mind around.  I was depressed.  I had stopped taking my medication.  I think everyone knew that, and that summer, Mom tried to get me help again.

Every summer, actually, Mom would try to get me help again.  I would always participate, but then go off my meds as soon as I came back to school.  It was an ugly cycle, and it pains me to this day that I went through it.  But I didn’t want anyone to know what I was going through.  No one knew I had bipolar disorder, outside of my aunt who worked in the counseling center and my academic advisor, who was more like a surrogate mother.

My senior year, I was applying for Ph.D. programs that combined psychology and the law.  Forensic psychology, it was called.  I went on interviews.  Costly interviews.  They bore no fruit because I acted absolutely crazy when I went to these colleges.  They saw through me and saw that I was very ill.

After college and after failing to get into any kind of graduate program, I started working as a mental health technician on an Eating Disorders Unit (EDU) at a local hospital.  As a person living with bulimia, this was a bad choice.  I wasn’t on medication, I was drinking a lot, and I started to gain weight.  I was also working PRN at another hospital as a mental health tech.

I became manic.  Several days a week, I would work 7:30-4 at the EDU and then 5-12 at the other hospital.  A lot of the reason I did this was to stay away from Joe, my abusive boyfriend that I was living with.  All that working didn’t keep his hands off my body, or his reigns of terror on my psyche absent.  I became suicidal.

I moved out of Joe’s house and into my own apartment.  I picked up a boyfriend, almost literally off the streets, and continued to drink heavily and work many  hours.  Eventually, I completely cracked.  I quit drinking and I started seeing a psychiatrist.  When things didn’t level out quickly enough, my parents brought me back to live with them in the little city.

After a few months, I had a job and I moved back out.  I was working as a case manager with the mentally ill.  My caseload was loaded with the sickest of the sick.  It was a very stressful job and I didn’t fare well.  I was written up numerous times for poor attendance and tardiness.  I eventually left that job, three  years later, on FMLA because I had really lost it and couldn’t work.

I did an intensive outpatient program and started to feel better.  After about a year, I was hired at the local prison to work with the mentally ill on things like obtaining disability and getting services set up in the community.  Here, I was constantly being written up and warned about my attendance and lack of punctuality.  I was very depressed, I was very manic, I was very anxious.  I was always very something.  I did good work, though, and even won awards.  My boss liked to say that I’d outwork anybody, as long as I came in that day.

Eventually pressure built up again and I was very ill.  I went on FMLA and had to resign because there was no way I could come back to work.  My mom saw a pattern in my work and educational history, and talked with my doctors and therapist about filing for SSDI.

I couldn’t see a life without work, but I filed anyway.  We applied April of 2012 and it was awarded June or July of the same year.  This quick answer, with no questions or rebuttals, confirmed to me that, while I might feel like I could work, the powers that be disagreed.  SSA, my parents, my doctors, my therapist all concurred — Rose can’t manage full-time employment.

So here I stand, at the bait shop.  SSDI checks coming in and working about 20 hours per week at an extremely low-stress job, so that I can function on a daily basis.  I moved from high-achieving college student, pursuing a Ph.D., to a cashier and bait slinger.  How far we fall, right?

What I can say now, however, is that I’m happy.  I am truly, genuinely living a life worth living.  It’s not always easy and there are many bad days.  Not enough sunlight or getting my sleep schedule thrown off can put me in a tailspin.  If I stick to my structure, to my routine, use my DBT skills, and employ my support system, I do pretty well.  I even like my job in the bait store, slinging bait, ringing people up, and keeping track of files and paperwork.

People who knew me way back when may not recognize or understand who I am now.  I generally don’t give them that luxury, either.  There is a very difficult stigma surrounding mental illness, and additionally surrounding young people being on SSDI.  I tell only those I trust, and only those who I think will have an either neutral or positive response.

What you see isn’t always what you get.  There is more to me than bipolar and depression and anxiety.  If I had high blood pressure and diabetes, you wouldn’t shame me, now would you?  The unfortunate truth is that you will likely never know who I am and what I go through.  I would rather you not know me than be shamed for having illnesses that came to me through no fault of my own.

Seven Weeks of Weird: The Prison

7weird

 

Welcome back for another round of “Seven Weeks of Weird,” a challenge put on by Mental Mama.  With only this week’s and next week’s to go, I’d say I’m a little relieved this challenge is almost over.  Sometimes it’s hard to come up with weird things about yourself!

This week asks:  “What’s the weirdest way you’ve every earned money?”

Ahhh, ummm…by working, doing the Rosa thing,  helping out all those mentally ill people do everything from find a job to manage their meds to apply for disability and Medicaid to get a second pillow from the prison laundry.

Although I don’t personally think it’s weird, I spent three years working as a mental health case manager in a women’s prison.  I get asked all sorts of questions about that, and it really was an interesting job.  I was mostly tasked with coordinating all medical and mental health care, sometimes including housing, always including SSI applications for the women in the facility who met criteria for my program.

It was a stressful job and I don’t like to think about it a lot because it was the last job I crashed and burned on before I went on SSDI.  I can say for the most part that the staff I worked with were burnt out, uncaring, and rude at best, but the inmates were overall very thankful and caring.  Now THAT’S kind of weird, huh?

 

I Just Want Your Time

images

 

My DSB is finally home.  He actually came home yesterday.  He’s not fixed, but he’s better.  And he’s a little better today than he was yesterday.  Hopefully that trend continues.

Being without my normal DSB time this past week has really thrown me off.  I didn’t sleep.  My eating was more messed up than normal.  I took more PRN’s than usual.  I didn’t feel myself.

DSB and I make it a point to connect, spend time together, be together, be in the same room as each other as much as possible.  Depending on when we wake up and go to bed, even on the days I work and have appointments and other stuff going on, we probably get five or six hours of face time every day.  Maybe more.

I thought that was normal.  I did some asking around, and it’s not.

And it made me realize that DSB and I are not normal.  Of course, we  have the benefit of me working part-time and DSB working when he has a project to do.  It’s like, by being on disability, we are rewarded by having more time for each other.  I don’t know what it would be like if we both worked full-time.

Wait, yes I do.  I’d be crazy and DSB would be in traction, hooked up to oxygen and a heart monitor.

Whatever the reasons are, any amount of time you can spend with your significant other is worthwhile time.  I don’t think it even particularly matters what you’re doing.  Get that face time in, even if you can only manage an hour.  When you don’t, things can get out of whack in a hurry.

When DSB and I first got together, I was in a habit of being very selfish and never making time to spend together.  One day, he played me this song, and he said, “Rose, this is what I’ve been trying to say.”  And I got it, just like that.

 

 

Waiting on a Return Email

I have only one friend from college that I still occasionally email with, and let’s just say the emails are quite infrequent.  She sent me an email about a week ago, talking about getting a promotion at work and the new degree she is working on.  My friend is an over-achiever, if ever there was one, and has been known to throw herself onto many a project just because someone says it can’t be done.

I’ll be honest, I wasn’t really sure how to react to the news that she received a lateral promotion and is going to get another masters, to add to the two she already has, and, oh, her Ph.D.  We were on the same track in college.  If I weren’t bipolar, I’d probably be doing exactly what she’s doing, but that’s only happening in another time-space continuum.

At the end of what I think was a very long rant about statistics and computer programming and data analysis (I think), she asked me if I was still working at the prison.  And how she imagined that would be “the hardest job in the world.”  Wow.

I thought I already had my “coming out of the bipolar closet” party with Jen.  Apparently not, or she has forgotten, which is possible because she is a severe binge drinker and doesn’t have the best memory (although she was able to stuff several degrees under her belt, so she must have some memory).  The post I wrote yesterday and added as a page on my site, “The Story and the Stigma,” stemmed from me responding to my friend’s email yesterday.

I took Jen through every step of what I’d been up to in the past two years (since apparently she hadn’t been listening) and told her that this all (working part time, being on SSDI, etc) was a long time coming.  I haven’t heard back from her, and I’m leaning towards the “you never will” because she’s sent me several other articles since, so I know she’s checked her email.

Typing all this out makes me think — I knew exactly what Jen has been up to for the past two years; why doesn’t she know a thing about what I’ve gone through?  I can’t figure out if she doesn’t remember or doesn’t want to remember or just lost track.  I suppose it’s altogether possible I never told her, but not likely.  In fact, I distinctly recall an email I sent to her right after I left inpatient hospitalization for the first time.

At this point, I only care a little about what Jen will say.  I’ve had to go over and over with so many different people why I’m in the position I am in, and so I’m kind of through with the drama of it all.  Jen will either reply back to the email, or she’ll just keep mass-mailing me articles that she thinks are interesting.

And I’m just going to keep telling myself that I don’t care until I’m blue in the face.  I’m going to keep being nonchalant about this and not freak out, because that would really indicate some mental health issues.  Sensitive?  Gah, me?  No!  Much anxiety in your life?  Lay in bed at night awake, wondering what all those people out there are  thinking of you and how they are probably judging you?

I think I’m going to need some direct therapy on this issue.  For now, I’m putting the possibility of a return email from Jen low on my priority list, and I’ll just have to keep shoving it back down there until it stays.

The Counting Crows, Long December  (We would listen to Counting Crows nonstop, singing all the words, back in the day.  This video takes me right back and I am stuck.)

The Story and the Stigma

Throughout grade school, middle school, and high school, I earned top grades.  I wasn’t the valedictorian, but I gave the high school commencement address, and I rocked it.  People on the outside saw a high-achieving, confident person.  Inside, I was fighting bipolar disorder, crushing anxiety, and an eating disorder.  No one knew, and I didn’t tell them.  I was afraid of what people would think.

When I went off to college, I went somewhere small, about an hour away from home, with the unsaid statement that I couldn’t go far away and succed; not without support.  Not without trips home every weekend.  I accepted it, and as time went on, I learned they were right.

I excelled at this small college, changing my major from pre-med to psychology after a horrific first semester in science classes that I couldn’t wrap my mind around.  I was depressed.  I had stopped taking my medication.  I think everyone knew that, and that summer, Mom tried to get me help again.

Every summer, actually, Mom would try to get me help again.  I would always participate, but then go off my meds as soon as I came back to school.  It was an ugly cycle, and it pains me to this day that I went through it.  But I didn’t want anyone to know what I was going through.  No one knew I had bipolar disorder, outside of my aunt who worked in the counseling center and my academic advisor, who was more like a surrogate mother.

My senior year, I was applying for Ph.D. programs that combined psychology and the law.  Forensic psychology, it was called.  I went on interviews.  Costly interviews.  They bore no fruit because I acted absolutely crazy when I went to these colleges.  They saw through me and saw that I was very ill.

After college and after failing to get into any kind of graduate program, I started working as a mental health technician on an Eating Disorders Unit (EDU) at a local hospital.  As a person living with bulimia, this was a bad choice.  I wasn’t on medication, I was drinking a lot, and I started to gain weight.  I was also working PRN at another hospital as a mental health tech.

I became manic.  Several days a week, I would work 7:30-4 at the EDU and then 5-12 at the other hospital.  A lot of the reason I did this was to stay away from Joe, my abusive boyfriend that I was living with.  All that working didn’t keep his hands off my body, or his reigns of terror on my psyche absent.  I became suicidal.

I moved out of Joe’s house and into my own apartment.  I picked up a boyfriend, almost literally off the streets, and continued to drink heavily and work many  hours.  Eventually, I completely cracked.  I quit drinking and I started seeing a psychiatrist.  When things didn’t level out quickly enough, my parents brought me back to live with them in the little city.

After a few months, I had a job and I moved back out.  I was working as a case manager with the mentally ill.  My caseload was loaded with the sickest of the sick.  It was a very stressful job and I didn’t fare well.  I was written up numerous times for poor attendance and tardiness.  I eventually left that job, three  years later, on FMLA because I had really lost it and couldn’t work.

I did an intensive outpatient program and started to feel better.  After about a year, I was hired at the local prison to work with the mentally ill on things like obtaining disability and getting services set up in the community.  Here, I was constantly being written up and warned about my attendance and lack of punctuality.  I was very depressed, I was very manic, I was very anxious.  I was always very something.  I did good work, though, and even won awards.  My boss liked to say that I’d outwork anybody, as long as I came in that day.

Eventually pressure built up again and I was very ill.  I went on FMLA and had to resign because there was no way I could come back to work.  My mom saw a pattern in my work and educational history, and talked with my doctors and therapist about filing for SSDI.

I couldn’t see a life without work, but I filed anyway.  We applied April of 2012 and it was awarded June or July of the same year.  This quick answer, with no questions or rebuttals, confirmed to me that, while I might feel like I could work, the powers that be disagreed.  SSA, my parents, my doctors, my therapist all concurred — Rose can’t manage full-time employment.

So here I stand, at the bait shop.  SSDI checks coming in and working about 20 hours per week at an extremely low-stress job, so that I can function on a daily basis.  I moved from high-achieving college student, pursuing a Ph.D., to a cashier and bait slinger.  How far we fall, right?

What I can say now, however, is that I’m happy.  I am truly, genuinely living a life worth living.  It’s not always easy and there are many bad days.  Not enough sunlight or getting my sleep schedule thrown off can put me in a tailspin.  If I stick to my structure, to my routine, use my DBT skills, and employ my support system, I do pretty well.  I even like my job in the bait store, slinging bait, ringing people up, and keeping track of files and paperwork.

People who knew me way back when may not recognize or understand who I am now.  I generally don’t give them that luxury, either.  There is a very difficult stigma surrounding mental illness, and additionally surrounding young people being on SSDI.  I tell only those I trust, and only those who I think will have an either neutral or positive response.

What you see isn’t always what you get.  There is more to me than bipolar and depression and anxiety.  If I had high blood pressure and diabetes, you wouldn’t shame me, now would you?  The unfortunate truth is that you will likely never know who I am and what I go through.  I would rather you not know me than be shamed for having illnesses that came to me through no fault of my own.

Finding Meaning in a Bait Shop

Almost one year has passed I stopped working any sort of formal job. When I quit my last position, I was sure that I would find something else, once the mania and depression and overall craziness blew over.  Sure that I would breeze right back into the mental health field, armed with my several years of experience and (nearly-useless) Bachelor’s Degree.  It turned out that, instead of this happening, as had been the pattern for several years (work, severely decompensate, period of unemployment, back to stressful job, rinse and repeat), I ended up choosing another route.

And it was a route that I was not altogether convinced, at first, would even work out, nevertheless be the best thing that had happened to me.  Every member of my treatment team encouraged me to file for disability.  My family and DSB and everyone I asked agreed.  No one thought that I should go back and repeat the stressful job to severe decompensation to unemployment and back again cycle.  The cycle that has gone on my entire adult life.

I had a good part of my identity tied up in my career, as do many people.  I was terrified that I wouldn’t be working with the mentally ill, that I wouldn’t be advocating for them, that I wouldn’t be able to help people get up out of the mire.  Most of my self-worth was entrenched in this work, and I just didn’t know how I would fare without it.

I filed for SSDI/SSI in April of 2012 and was approved in June of 2012.  I didn’t receive a check until November 2012, but thankfully my parents and DSB were able to support me during that time.  It wasn’t my concern at the time, but I never wanted for anything.  I was too busy being depressed and irritable and generally unwell.  

Time has passed and I really feel like I have evened out.  I’m would even consider myself content, happy on a good day.  Not working took quite a bit of getting used to, but I found things to do to fill up the time and I am working at my parents’ businesses on a very part-time basis.  DSB and I are able to spend a lot of time together, which is simply wonderful, and I also spend quite a bit of time with my mom, QoB.  I think not working has really allowed my relationships to get stronger, as well as allowing me to focus on what is really important:  love and family.

I will be working more this summer, as my parents’ businesses are somewhat seasonal, but I have worked out a schedule with BigDog and QoB so that I will only be working about 12-15 hours per week.  I am pretty sure I can handle that and I know it will be a huge help to them to not have to hire someone for those hours.

Working at the shops really gives me a sense of achievement, as it puts me out in front of the public and forces me to interact with others.  In other words, it puts me out of my comfort zone, and that is a good good good thing.  Building mastery and building structure, both DBT skills, are very key to my success as far as my mental state goes.  I need to feel useful, like I am challenging myself.  I also need to stay busy with structure in my life.  This small bit of work does that.

Not everyone with a mental illness has the incredible support system that I do, and I am immensely grateful that I have several people that I can always count on.  I don’t think I would be faring as well if not for these people, and for them, I am eternally grateful.