*DISCLAIMER: I am not a doctor, therapist, or health professional of any kind. I’m sharing things that I have been taught that have helped me (or not). This is my experience.

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Thursday, July 26, 2012

Depression

As every day passes it becomes more and more obvious that depression is setting in.  I think about eating and sleeping more than anything else.  When I wake up all I want to do is go back to sleep.  My motivation for pretty much everything else is gone.  I didn't even put my pillowcase back on my pillow before going to bed because I just wanted to sleep.  I feel sick when I eat, and I feel sick when I don't eat, and I feel sick when I eat too much.  I feel like the people around me look down on me because they see me as lazy and grumpy and pretty much useless.  I feel like crying at basically anything emotional, sad or not.  And I do cry whenever I can't keep myself from doing so.  My body hurts all over, all the time.  It's classic depression.

I see my new psychiatrist next week and there are no openings before my appointment.  I'm taking my medication as I'm supposed to but it seems that it's just not enough.  The psychiatrist can't make any med changes without seeing because I've never seen him before.

I am doing my best to deal with this.  I've pulled myself out of depression before, but I've also not been able to hold myself steady and fallen too low.  I'm writing because it is my coping skill.  I'm trying to keep doing my normal stuff but my focus and motivation, they're just not there.

I'm so ashamed because I know so much about depression and coping skills and I can't figure out how to use it to break out of this.  I feel so hopeless because if I know so much about my illness and I can't keep this from happening, what the hell is the point?

Tuesday, July 24, 2012

Loneliness

While I enjoy, almost prefer actually, having time to myself, having cable has driven me to the loneliness that I have noticed coming for awhile.  Watching only crime shows on Netflix helped me ignore the relationships I don't have.  Now watching things like Grey's Anatomy, it reminds me of the friends and boyfriend that don't exist.

Having schizoaffective disorder makes relationships difficult to form and pretty much just as hard to keep.  My negative past experiences have pretty much shaped my view of how people respond to my illness.  And honestly, that's really holding me back.

I know that I've talked about this before, and some people have a simple answer, but I always wonder when the right time is to tell people.  I've heard people say that you never have to tell people or that you should wait awhile before you do.  I feel that I'm basically lying to someone when I don't tell them.  I guess the big problem is that I feel that schizoaffective disorder is who I am.  It's hard for me to separate me from it.  When I think about why I say or do or think something, or even before I do something, I question how my illness is contributing.  I feel like my illness is a burden and not telling people about that burden sets me up for a situation where people feel like I'm deceiving them.  After finding out about my illness, a guy I was dating said that I just was no longer the person he thought I was.

It's not just the person's reaction that worries me.  People have been known to use my illness against me in  relationships.  Expressing logical worries has ended in someone telling me I'm delusional.  People have decided that I belong in supervised living or an RCF because they don't have faith in my ability to take care of myself and they don't fully understand mental illness, no matter how much I try to teach them.  People just don't understand and they seem to have the same problem I do, separating my illness from me.

I have as big a problem meeting people as I do with relationships.  Small talk is my achilles heel and I do my best to keep it short.  People always want to talk about what you I do for a living or if I'm in school.  They want to know how I spend my time and I really don't have an answer for that.  I don't want to lie, but really, what am I supposed to say?  I'm on disability and I don't see that changing and I spend my day at home or at appointments?  My therapist suggested I should say I help my dad with his business, which is true and I will prolly use it.  I just hate feeling like I have nothing to contribute; to society, to a conversation, to a relationship, etc.

I'm glad I'm seeing the psychiatrist in week so we can adjust my medications.  I'm a little leery because this will be my first appointment with him and I don't know his style.  I hope he listens to what I have to say and lets me have some say in what we do with my medication.  With the depression symptoms (increased appetite, increased sleep, just not feeling physically well) and the paranoia, a med change is order.

Tuesday, July 17, 2012

More Anger...and Hurt

I know I have talked before about having trouble with sleeping at night.  It seems to be getting worse, which I attribute to the renters in the other side of the house.  My room is directly below their side of the house.  Not only am I scared because I can't see everything around me, I hear noises that logically I know are coming from upstairs, but with my delusions I question that.  The other night I even tried sleeping on the couch with the lights on because my anxiety was so bad in my room.

The reason I posted the last two entries that are from my old blog is because I've been thinking a lot about two things; the past and the future.  Being in the city where I went to high school makes me think about all the dreams I used to have and the way things were.  The part about the future is more confusing:  Where am I going?  What will I do?  What CAN I do?  I guess I just feel like I'm stuck again, "treading water" again, and I don't know if that will ever change.

I received a letter from the court advocate from the county I was committed in.  She thought she would warn me that if I don't follow the psychiatrists suggestions it could later be said that I am non-compliant and have to committed again. I really, really want to send her an email or letter in response.  I haven't refused psychiatric treatment in, I'd say, six years.  The only time they have felt the need to commit me is when they want to lock me up in a "care facility" and they know I won't go willingly.  Again she is pointing the finger at me, insinuating that it is my own fault I am sick and that I relapse, and now she's saying it's my own fault I get committed.

She claims she wants to make sure I know the consequences to my actions.  My actions?  You mean making the educated decision to see someone with 30 years of experience with mental illness weekly, instead of seeing someone who doesn't even know the definition of schizophrenia without looking it up.  Wow, I guess I do make horrible decisions that put me in the hospital, and ultimately get me committed (in case you didn't notice I'm going for sarcasm here).  How the hell is someone who doesn't know mental illness from a stick up their ass supposed to help me stay out of the hospital?  I hate to tell her, but having people like that around to "help", ultimately ends up with them encouraging me to GO to the hospital.  They don't know how to help me.

I haven't seen my new psychiatrist yet, but you can be sure that I'll be talking to him about his recommendations about services.  From what I hear he is very good at his job, which would make me infer that he has a brain in his head with the ability to see the best options for my treatment.

Everyone knows what's best for me, everyone understands what's wrong with me, everyone wants me to do the right thing.  That is a load of shit that the mental health system and my family has been feeding me for years.  There were times when I needed guidance, and there will be times when I need it again, but you can sure as hell bet that I won't be looking for it from people who are looking for what's easiest or cheapest for them.

I had a nurse once tell me that I needed to just accept being sick, that I wasn't as bad as some people and things would be better if I would just accept having schizoaffective disorder.  I agree that acceptance helps you be more at peace with the cards you've been dealt, but a healthy person telling me that I just need to get over the fact that everything I dreamed of will never come true?  Seriously?  I'm not going to do what's easiest for everyone else.  I refuse to compromise what's best for me for what is easier for other people to handle.  Because I know my illness like no one else ever will.  I have to fight the guilt over not being able to pull through when I relapse and when I become depressed over my illness because it is being pounded in my head that it is my fault.  It is no one's fault they have a mental illness and they should never be treated that way.

Again I have to argue that if there were more psychiatrists and therapists or a better emergency care system for people with severe mental illness I wouldn't have to fight so hard.  When I have issues (like I'm having now) I have two choices; go to the hospital or wait until I can get an appointment.  Going to the hospital means I could get put in placement if I don't get well fast enough and waiting for an appointment slot to open up could put me in the hospital.  Having under-educated people "watching over" me, or even having the most understanding, educated person around does not change how my illness works or my options.  It's still either go to the hospital or wait for an appointment, and I am still going to relapse.

I don't want to say that services are bad and that they are the wrong choice for everyone, because sometimes that exactly what someone needs.  But if you are very self-aware and understand your illness, you need to make your own choices.  Even if you're not, most people are going to make their own choices anyway and some will eventually get to a place where they know their illness and are able to make the right choices.  Some people will never understand their illness and choices need to be made for them, but I am not that person.

I wish people could see how hard I work not to relapse; using the CBT training with positive self talk, taking my medication, doing research on medications and treatments, using my coping skills (like this one) all the time, avoiding triggers, going to appointments, etc, etc, etc.  I mean, it's a full time job in itself.  Managing my illness is my top priority, but anytime I'm hospitalized or committed no one sees any of that.  They just see the relapse.  And they just see a sick person.

Monday, July 16, 2012

Emotional Story from June 5, 2011


This is a story I wrote and posted to my old blog on June 5, 2011.  It is deeply personal and talks about my struggles with mental illness and relationships.  It echoes a feeling I've been fighting since even before I wrote this:  Treading water.

"She sees so much in the distance, beautiful, colorful, with smiles and laughter, and a sense of strength and contentment.  The only way there is to survive the the water.

As she feels forced to move into the choppy waters, she tries to test it, one foot at a time, but she falls completely, head under, into the frigged waters.  Words echo in her ears, "Your father doesn't even want you", "No wonder you don't have any friends", "You can't do this", and they help pull her even further under.

As she's always been a fighter, she fights to the surface, gasping for air, spotting the distance at what seems a thousand miles away.  It gives her the greatest gift, while still struggling to catch her breathe.  It gives her hope.

After making a little progress towards the heaven in the distance she is suddenly pulled deep below.  She can't seem to find a reason as the thoughts come to mind.  Her babies, her beautiful babies.  The sadness was the hand pulling her down.  She knew she had made the right decision when it came to her babies, but she still had to cry those tears for what she would never have.  And it was those tears that had brought her down.

When she was finally released and came to the surface for air she looked to the distance and had to rub her eyes at what she saw.  It was still there but the beauty (while still beautiful) had faded some, the laughter a little quieter, and colors a little duller.  She decided to push even harder to get to her what she had decided was her home, where she belonged, before anything else changed.

She swam as hard as she could until she she started to realize she was beginning to sink, almost like quicksand.  She tried to pull away, but the water pulled harder and down she went.  As she tried to pull herself to the surface she saw faces, so many faces.  Faces of people lost, faces of people broken, even faces of people she refused to let herself remember.  There they were, staring at her, accusing, forcing her to remember.  Guilt washed over her, for the people she hurt, the people she couldn't help, and the ones she had chosen not to give the time of day.  As tears welled up in her eyes she found herself floating to the surface.

Looking at the distance now, it didn't seem any closer.  This only motivated her more.  The water could pull her down, but she could pull back.  She saw the future she wanted and she had worked so hard so what could possibly take it from her?

As she was getting closer she swore she saw the shiny fin of a dolphin close by dive in the water.  Excited by the idea of seeing a dolphin up close she dove in to see.  She heard music all around and soon saw the dolphin.  She swam behind it for miles and when it stopped she went to touch it.  Her hand went right through it.  Confused, she reached out again.  The dolphin wasn't real, neither was the beautiful music.

Horrified, she scrambles to the surface, tears streaming down her face.  She looks all around for her vision in the distance.  Every angle she looks is just water, more and more water.  Her future, well, it is gone.

What choice does she have, but to go on, just treading water?"

New Year Post from My Last Blog: January 2, 2011

This is an entry that I first wrote as a note on Facebook, then moved to my last blog when I decided to become more personal with my entries.  This is from January 2, 2011 which seems like a long, long time ago.


"Note from facebook #2

My Life These Days...

So it's now 2011.  I will officially be 24 on February first.  It's hard to imagine really.  With the ECTs ruining a good 2 - 2 1/2 years of my memories and leaving many other holes, you can imagine how I can feel only 20 or so.  I don't mean maturity wise or intelligence wise, but if we're talking years alive, 20 seems to fit right.  It seems like just the other day I was charming older men and drinking waaaay too much.  Who knows, I may still be charming older men ;).

These days I've quit drinking (it doesn't mix well with my medication).  Honestly, I'm not currently dating but I'm working towards thinking about it (lol).  Ya know it's hard with a situation like mine to keep an eye out for that potential date.  And then how do you explain it them?  Hey, you're really cute, by the way I'm crazy and can't have any kids!  Haha, that's a turn on.

In the coming year I plan to make my apartment my own (hopefully I'll get a real bed!) as well as (once I heal from the surgery) take some classes at the YMCA, taking art classes in the spring, and continue with my IPR and HAB programing.  Looking at those plans, they should keep me busy, not to mention my normal health maintenance that I have to do all the time.  As always, I'd like to stay out of the hospital but, those of you who know me know that hospital visits don't upset me as much anymore.  I know that sometimes that's where I have to be.  I'm going to keep my doctor visits pretty frequent for now to try to ward them off.

Anywho, that's what's starting off my 2011.  May you enjoy yours!

Comments:
Amber Clabaugh: good luck :) hopefully you have a great year and you get everything accomplished that you want to get done :)"


It's hard looking back, almost as hard as it is looking forward.

Wednesday, July 11, 2012

Anger

Today I found out that I am not under court committal.  When I was talking about being discharged from the facility I was in they assured me I would be on outpatient committal, and that it would include having services.  By services I mean SCL (Supported Community Living) and IPR (Intensive Psychiatric Rehabilitation) services and in order to have those services you have to have case management.

SCL services can include any range of things including rides to appointments, making sure medication is refilled on time, etc.  It's all based on your personal needs.  IPR, although it sounds like a deep serious thing, it comes down to using small steps to complete a long-term goal having to do with education, financial, social, or transportation.  Case management basically sets up these services and is available as a resource.

I don't think these services are a bad thing, don't get me wrong.  SCL and IPR services were very helpful and I enjoyed working with the workers I had when I was living in a city where I knew no one.  It was good for me to have someone checking on me a few times a week.

I spent time and was stressed out about getting these things set up so I could leave.  What makes me angry is that I was given the impression that I was not given a choice about having these services.  I have been dealing with people in these services in the area that I live since I got here.  I have been basically teaching them about my illness and what the court advocate said I needed from them to prevent relapse.  These people, my case manager here and the SCL worker, know very little about mental illness, in particular schizophrenia and schizoaffective disorder.  They do not have IPR in this area yet.

After putting all this effort into trying to be sure I was meeting the court's idea of keeping me from relapse, I find out that it was a wasted effort.  I am very upset that the court didn't notify me that my committal was dropped when I left the facility, not to mention that they made me believe that these services were required.

I am seeing a therapist that has 30 years of experience in mental health that I didn't have explain what my illness is defined as, that I believe is a much more beneficial than any of these services I have in place.  I agree that it's good to have someone to check in with me regularly, but if those people are uneducated in what to look for when problems come up is pointless.  In this area services are more geared toward those who are intellectually challenged than the mentally ill.  I feel confident that seeing my therapist once a week is enough.

I am relieved that I am not under court committal but I am still worried that not if but when I relapse, I will end up back in placement.  I think that it's ridiculous that when I go into the hospital I am asked what I did wrong to end up there.  I have a chronic mental illness.  I should be able to go to the psych ward when I am in crisis.  It makes me angry that instead of trying to help me, they're asking me what I'm doing to make myself relapse.  You don't ask someone with alzheimers why they keep forgetting things.  When we were meeting in the facility about my discharge they were saying the same thing, "What can YOU do differently to prevent hospitalization?"

It all boils down to money.  They don't want to spend the money to help me (and others with mental illness), they would rather punish me for coming to the hospital.  My point is that I come to the hospital when I have no other choice, when I'm so depressed or psychotic that I want to die and could act on those impulses.  There are times when I can't get into my psychiatrist for three weeks and I need a med adjustment NOW.  I shouldn't have to compete with substance abusers and the homeless for a psych bed when I need help.  There should be emergency beds at substance abuse treatment centers for people who OD on illegal substances or alcohol.  Instead they take up beds in the psych ward which are supposed to be meant for people who are mentally ill.  They're not meant for people who don't have a place to go, they should be taken to shelters or a church.  I have a chronic mental illness and depending on the day of the week that I go to the ER I could be sent across the state to some tiny shithole of a psych ward because there are no beds anywhere else.

Instead of funding research for finding better medications and solutions for people with severe mental illness we focus on cancer and depression.  Very seldom is there any substantial research on things to help the truly mentally ill.  Take schizophrenia for example:  Schizophrenia usually starts in early adulthood, where most people start paying their debt back to society.  Think about it, we pay taxes to pay for them to go to school for 13 years before most of them start paying social security income taxes.  Then when they have their onset so many are completely disabled, some for the rest of their lives.  We pay these people SSI payments and give them Medicaid because they can't work.     You tell me what illness costs more.  Not to mention the heartbreak schizophrenia causes.  When people get alzheimers most have worked many years before the government has to start taking care of them.  And yet we spend so much money on finding cures for everything else.


Then there's the system of sending patients to RCFs (Residential Care Facilities).  It costs the state a lot of money when you're in the hospital if you have medicaid.  They want you out of there as soon as possible and if you're not making progress you will be sent elsewhere.  Think about this:  The med changes are not working, you're still suicidal, you don't have anyone to take care of you to the extent you need.  They are still going to get you the hell out of that hospital.  In an RCF you see a psychiatrist every three months and are barely observed by a staff that has little to no education or experience in mental health.  In an MHI (Mental Health Institution) you see the doctor much more frequently and are almost always observed by people who have both education and experience in handling all kinds of mental health scenarios.  Where are they going to send you?  To the RCF.  Why, when you need medication changes and observation, would they send you to a place that does none of those things?  Because the federal government does not reimburse the state any of the money they pay for you to be in an MHI.  At an RCF the rates the state pays are much lower and they are mostly reimbursed by the federal government.  MHI stays are much shorter than RCFs and people who receive SSI and SSDI have to pay for part or all of their fees associated with the RCF.  I paid $861 out of my $956 check, every month.  That doesn't include you pharmacy bill.


To put it simply, the mental health system is totally fucked up.  The mentally ill are far from the top priority.  I know in some areas of the country there are respite centers but where I live that would be a dream come true.  Psychiatric professionals are scarce in a lot of places (including here) and many choose to practice privately so they can be selective of their patients.  Some outpatient psych treatment centers have policies that if you see someone outside of their clinic, you can't come back.


I never want to go into the hospital again because I don't want to get stuck somewhere for doing the right thing.  Everyone sees a hospitalization as a negative thing.  But I see it as a situation where I could have committed suicide, but instead I got help.  That sounds like a positive coping skill to me.

Friday, July 6, 2012

Interview for CureTalk

CureTalk is a website that has stories about and from people with many different conditions.  It also has articles from professionals about emerging treatments and allows you to search for clinical trials in your area.

CureTalk asked me for an interview and the link to it is here:

http://trialx.com/curetalk/2012/07/curetalk-interview-with-jen-vandee-schizoaffective-disorder-survivor-and-blogger/

Thursday, July 5, 2012

Dropping Med Weight and Psychotic Symptoms

I know I haven't written in a little while.  I've been taking some time to start a new workout routine with yoga and walking on the treadmill.  For the most part I feel great after workouts and looking at some of my old pictures keeps me motivated.  I bought a wireless mp3 player headset that I listen to which helps keep me entertained while walking in place.  Today I bought hand weights to help tone my arms more while I walk.

I am using an app on my phone to count calories.  I can scan the barcode of things and it figures out the calories for me.  If I stick to the plan I should be back to a healthy weight by next year.  I bought a lot of fruits and vegetables and some low calorie dinners to help me stick with it.  I can definitely say it is a challenge because I love food.  For some time now I have been telling myself that I don't want to deprive myself, but in reality I can eat whatever I want as long as I stick to my calorie budget.

I've been doing a lot of online research about what is best for your body when it comes to exercise and diet.  I try to shop for good carbs and low fat and low calorie foods.  I started taking a multivitamin.  After my knees started giving me some trouble I looked into how much you actually should exercise.  The video I've been following in my yoga routine is a combination of power yoga and flow yoga so it incorporates muscle toning as a big part of the practice.  What I've read suggests that you should do cardio most days a week and that you can do yoga everyday, but you need to give your muscles a break when doing muscle toning.  It says you should do these toning exercises 3 to 4 times a week to be sure you don't hurt yourself and that your body doesn't break down muscle instead of fat.  I've decided to continue with yoga everyday and cardio most days, but to use less intense yoga videos every other day.  I'm also looking into ways to get more cardio in, like dance workouts.

Of course, if you haven't read my previous posts you probably don't know the history about my weight.  The heaviest I had ever gotten before taking antipsychotics was 120 lbs.  That is healthy for my height at 5'1".  I gained some weight switching from antipsychotic to antipsychotic, but when they put me on Seroquel things got out of control, especially when they really upped the dose.  Part of it was my fault, knowing that Seroquel can cause weight gain and refusing to limit what I ate.  I just didn't want to deprive myself.  I thought that with so many things I can't do because of my illness I wouldn't dare take something I really enjoyed away from myself.  Now I'm on a medication that is supposed to not cause weight gain and I was told I would go back to my original weight.  After making no changes and expecting the weight to fall off, and of course getting no result, I realized it was time for a change.  REMINDER:  All medications cause different side effects in different people because all of our bodies are different.  Never stop taking your medication without talking to your doctor.

I saw my new therapist for the first time the other day.  I wasn't sure we would be compatible because she met me at a church today.  That's where she'll be seeing me from now on.  We discussed my being atheist and she said it would not be a problem.  She didn't bring religion into any of our discussion, which was mostly me talking about my past and how I got here.  She seemed to appreciate my insight and told me she had never met anyone like me.  She said she had had many patients with chronic mental illness over her 30 year long career.  I think things will go fine, even if she is from Lutheran Family Services.  I go back to see her on Tuesday.

I have been having some issues with my mental health recently.  My psychotic symptoms seem to be a bigger issue than my mood symptoms.  Mood-wise things seemed to be going well.  I definitely have more energy and feel more upbeat on days that I exercise.  But it doesn't matter if I exercise or not, at night I am gripped by anxiety and paranoia.  My mind goes through all the possible scenarios of horrible things that could happen to me, no matter how unrealistic.  I check and double check the door to make sure it's locked and to see if anyone's in the house.  Eventually my bedtime medication takes over and I fall asleep, but I am afraid every moment until then.

I live in a small city with a very low crime rate, not to mention my house is kiddy corner from the home of a policemen.  My fears are irrational.  I sleep in my room in the basement where, even if there was a break in, no one would even know I was down there without really checking it out.  Besides that, Monty has never locked his door at night and usually forgets to close the garage doors and there has never been a problem.  A paranoid delusion.  Somehow my mind has convinced me there is a real danger when there is none.

The other half of my psychotic symptoms are the auditory hallucinations.  I mostly notice them when things are completely silent, like at night, or during other sounds, like the shower or air conditioning running.  Sometimes it's just people talking and sometimes it's someone screaming, and even sometimes yet it is music.  None of these sounds are really there, but my brain can sometimes make me believe they are.

I am dealing with the situation by listening to music a lot and a lot of self talk.  At night I repeat to myself that I am in a safe place and that there is no reason to be afraid.  I have tried to get into seeing my new psychiatrist sooner than my first appointment on August 1st.  There are no openings.  He cannot make any adjustments before my first appointment which will be an evaluation.  My plan of attack is to continue with my coping skills which will now include seeing my therapist weekly and the ones mentioned above. If things become more than I can handle I do have the number for my former psychiatric ARNP in Cedar Rapids that might make adjustments in a crisis.  Of course, if that doesn't work, I will be forced to go to the hospital even though I may end up back in a facility.  I hope it never gets that far, I don't know how I could handle being in one of those places again.  They shouldn't punish me for needing a med adjustment, but the doctors will do as they wish.

I found out from talking to my case manager that if I have to go back to the hospital they will most likely try to place me at Mary Greeley in Ames first, and then try Des Moines. My wishes of going back to St. Lukes to see Dr. Larsen will be totally disregarded.  It doesn't seem to matter that Dr. Larsen knows my case and me, not to mention my medications.  If I'm able, I will certainly drive to Cedar Rapids to attempt to be hospitalized there.

I am going to do everything I can to make it to my appointment date because they don't deserve to decide my future.