It's Been Awhile

I know it's been awhile since I've written a post.  I haven't had much to say and really I still don't.  My depression is continuing to get worse.  I haven't been eating much and I've been sleeping as much as I can.  My motivation and concentration are out the window.

I was supposed to see my psychiatrist yesterday but I got a call in the morning saying that they were having technical difficulties and I had to reschedule for next month.  I see him over the tv, like a Skype type thing.  They call it telepsychiatry.  I went ahead and scheduled even though I see the new psychiatrist a week after the new appointment.  Frustrated I asked to talk to the nurse because my meds needed increased.  They increased my Seroquel by 100 mg and my venlafaxine ER by 75 mg.  So now I'm up to 700 mg total of Seroquel and 150 mg of venlafaxine ER.  Hopefully the hallucinations will stop and the depression will finally give me a break.

It's freezing here today.  It was 72 degrees yesterday and right now it 28 degrees with the windchill.  My toes are soo cold.  I'm wrapped up in a snuggie and have my comfy socks on.  It's not supposed to get above 25 at night till further notice.  Uhk...

Survival Mode

Not much has changed since my last blog entry.  I am still fighting depression tooth and nail.  I am in survival mode, doing as little as I have to to make it to the next day, over and over.  I feel very empty.  Even when I'm hungry I just don't feel like eating.  I am taking in enough food to keep my stomach from annoying me.  I feel like communicating with no one even though I know isolating is not good for my depression.  I have a very hard time concentrating.  I spend most of my time focused on stupid things I've done over my lifetime.  Things from when I'm a child are not off limits.  I have a hard time convincing myself to do anything.  When I do try to do something it's like my mind can't keep up.  Thoughts are just not processing like they should.

Featured on CureTalk for World MH Day

This blog was featured on CureTalk for World Mental Health day.  Here is the link:

http://trialx.com/curetalk/2012/10/world-mental-health-day-curetalk-salutes-courage-and-determination-of-mental-health-disorder-survivors/

I am still struggling with the depression.  I just got up at 11:00 am.  I will most likely go back to bed this afternoon.  I've been spending my time awake on CrazyBoards.org as well as reading.

I got two books from the library that were recommended to me:  "Girl, Interrupted" and "An Unquiet Mind".  I read "Girl, Interrupted" yesterday.  You may have seen the movie but while there a few similarities in the book, they are very different.  I enjoyed both.  If you haven't heard of either one you should really check them out.  The book and movie are about a young woman with borderline personality disorder that ends up in a mental hospital for two years.  I am told "An Unquiet Mind" is about a women with bipolar disorder who becomes successful despite her illness.  I will most likely read part of it today.

I also bought a workbook on DBT (Dialectical Behavior Therapy).  So far I have yet to get past the first few pages.  They want you to begin with three goals, which is great, except I'm having a hard time putting my thoughts together.  The book is my sad replacement for group therapy, since I am unable to find any within an hour of where I live.

I did end up going up to 75 mg of the venlafaxine after talking to my psychiatrist's office.  So far no change.  I also set an appointment with another psychiatrist and I talked to my current psychiatrist's office about switching within their office.  They said they would look into it.  I'm not holding my breath.  My appointment with the new psychiatrist isn't until November 28th so I'll have to see the current one until then.

I have gone back to taking fish oil supplements because there are so many benefits for mental health, like better brain function and memory.  It was recommended to me to start at a small dose and freeze them to make it easier on my stomach.  So far very few fish burps, if any, and my stomach is handling it much better.  I plan to move up slowly to a higher dose.  It's recommended to take 1 to 3 g for the most benefit.  I've also started taking melatonin when I wake up in the middle of the night and can't go back to sleep.

I got a call back from my doctor's office about my blood test results.  It turns out my blood sugar is normal so I won't being going on metformin for weight loss.  Also, my bad cholesterol is high and my good cholesterol is low.  She recommended daily exercise and a better diet.  All the more reason I need to get past this depression to have the motivation to actually cook and exercise.  I've been mostly eating whatever is easiest to heat up.

When I see the psychiatrist on the 24th I am going to ask to go up another dose of the venlafaxine, unless I'm feeling better.  I'm still seeing my therapist weekly, but I have been cutting our appointments short because of lack of things to talk about.  I don't have much to say except how depressed I am.

Really Want to Go Back to Bed

My depression is lingering on.  If I could stay in bed all day I definitely would.  I was feeling a little bit better yesterday.  I feel like I should go up to 75 mg of the venlafaxine but I don't want to call my pdoc's office again.  I may just do it without calling.  I can't handle having no motivation for anything.  I feel like a lazy slob.  I need to be exercising not only for the depression but because of the Seroquel.  All I can think about is going back to sleep.

Back on Seroquel

I finally heard back from my psychiatrist's office today.  I told them how my ankles had swollen and my pupils were really dilated.  They decided to take me off of the Depakote and switch the Saphris to Seroquel.  The Saphris was causing jerking/twitching movement in my leg and arm.  I'm worried about the Seroquel because the last time I took it I gained 40 lbs.  I'm working with my doctor to try taking metformin if my blood sugar is too high.  I got my blood drawn to see if it is or not.

My neuro appointment went ok except for the fact that I can't stop the propranolol since I had to stop the Depakote.  They put me on Zomig for when I have a migraine so no more icky Imitrex.

My depression is really weighing on me.  I'm not sure what to do.  It was suggested that I exercise but I don't have any motivation.  I'm hanging out in chat and watching a movie.  That's all I can do for now.

Hair and Makeup Done

Here is a pic of me.  It's the first time I've done my hair and makeup in at least a month.  Please be polite and ignore my fatness.

Gloves and Tardive Dyskinesia

I bought some gloves yesterday to keep me from biting and picking at my fingers.  The only problem is I have a touchscreen phone and can't use it with the gloves on.  I've looked into touchscreen gloves but they are like $40 a pair. Guess for now I'll have to take the gloves off and on to use my phone.  It's better than picking and chewing on my fingers all the time.

I have been having this twitching/jerking movement in my arm and leg since I started the Saphris.  I thought it was part of the akathisia but the akathisia is gone now.  I called my pdoc's office and they called back to get some details before talking to the doc.  I never heard back.  I'm pretty pissed because I'm worried it will become permanent.  I'm thinking they're going to take me off the Saphris and start something else.  I'm not overly thrilled about the idea of changing my meds again for like the 6th time in a month.  But tardive dyskinesia is not something you mess with.

I'm going to go see a neurologist today about my migraine medicine.  With being on Depakote (which is supposed to help with headaches) I don't think I need my Propanolol which is my migraine prevention medicine right now.  I also can't handle the Imitrex injections anymore for when I do get a migraine so I need to talk to them about that.  I don't want to have to go to the hospital if I have a migraine.  I also hope that I can have them refer me to a closer neurologist because it's a three hour drive to see them.  I would have just went to see someone else but I could get into my old neurologists office more quickly.  I originally made the appointment about the neuropathic pain.  Now that it's better I'll just deal with the other stuff.

Going to this neurologist also gives me a reason to see family because they are on the way to the appointment.  I'm having lunch with my brother.  He hasn't been doing well depression wise for awhile.  I don't really have the money for the trip and lunch but I don't have much choice.  I also need to get some melatonin for these nights when I wake up at 1 AM and can't go back to sleep.  It seems to be that I can sleep every other night.

Video about Suicide

My Lovely Psychiatrist's Office

Well after spending yesterday's early morning hours hypomanic and then the rest of the day in a mixed episode (which I'm not sure if I can call it that because it was only a day) I'm back to being depressed.  I have no motivation so I've been spending my time on crazyboards trying to distract myself. People are always sympathetic to my situation there, on the boards and in chat.

When I called my psychiatrist's office on Friday they told me he was on vacation and the psychiatrist overseeing his cases told me to go back down to the lower dose I was on.  I told them that would be a problem because I only have capsules that I can't split.  They called me in a script for tablets and I'm just supposed to take them until I can talk to my psychiatrist on Monday.  Here's the good part, they called the tablets in Friday afternoon and I didn't notice until 6:30 when it was time to take one that they only gave me a script for two pills.  That's two pills for Friday, Saturday, and Sunday.  I swear these people...grumble, grumble.  So now I think I'm going to have to split the remaining tablet for today and Sunday.  I've heard people talk about the bad withdrawal symptoms and I'm hoping splitting it will keep that from happening.

I guess the only good thing that came out of it was that I'm no longer having the mixed symptoms.  I really didn't think it would work because we've always used a PRN antipsychotic to bring me down.  I'm not very excited about talking this over with my psychiatrist on Monday because I feel like since I started seeing him things have gone downhill.  He doesn't seem to have very many ideas on how to handle my symptoms.  I'm thinking about asking to go on depakote.  I know some people have horrible side effects but some people don't and I hear it's one of the best things to take for a mood stabilizer.

I am going to see a neurologist at the University of Iowa next week to talk about going on Topamax because I think it will keep my headaches/migraines away and it really cuts out your appetite.  I also need to talk to them about something to take if I get a migraine because I just can't take the Imitrex anymore.  It just makes me way sick.

I have a regular doc's appointment on Tuesday for my yearly exam (yay - sarcasm) and I might talk to them about going on something called Metformin which is supposed to help with the weight gain caused by antipsychotics.  If they are willing to give me that I think I will keep the propranolol for migraines and forget about the Topamax.

I had been talking to my ex and he told me he still loves me and misses me.  That was a week ago and he's no longer talking to me.  Figures, right?  Definitely does not help with my mood.

All I want is to crawl back into bed and stay there, ugh.

A Little Better Today

I am actually feeling a little better today.  I'm not out of the woods yet and I don't know if this will last but I do feel a little better.  I got out of bed after only going back to sleep once.  I actually wanted to get out of bed.  I haven't wanted to get out of bed in awhile.  I did go back to bed after initially getting up, but only once.  I even caught myself smiling while petting the cat.  And, get this, I even walked on the treadmill for 10 minutes.

Yesterday was really hard to get through so I'm a little worried about the sudden change.  Mania, although it sounds nice, is not the best thing for me.  Especially because I get paid soon and who knows what I would spend my check on.

My psychiatrist's office finally called me back today and called in a script for cogentin for me to take in the morning and at night.  It's helping some, but not completely.  Hopefully the increase of my venlafaxine to 75mg tomorrow and a few more days on the cogentin will help.

I also called around trying to find group therapy of some kind.  No luck.  I guess there's no place around here that does group therapy.  It sucks because I really do well in group therapy.  I thought there might be at least a STEPS group.

Slipping Deeper into Depression

My depression has been getting worse and worse.  It's now to the point where I will do almost anything to stay in bed and am only spending 6-8 hrs a day out of bed.

I am having akathisia (restlessness, feeling like you have to move) as a side effect of either the Saphris, the venlafaxine, or both.  I'm taking benedryl as my doc has advised me to and am taking my left of clonazepam as well but it doesn't seem to be helping.  It just gives me one more reason to want to lay in bed.

I have a laundry list of coping skills but I can't seem to get the motivation to do any of them.  I even bought and started a puzzle, but now I won't touch it.  I keep thinking about exercising but I just can't force myself to do it.  I was going to print off coloring sheets but it's the same problem as the rest.  Even concentrating on typing this is almost too much.

I'm going to call my psychiatrist's office tomorrow and tell them how bad things are getting and ask them if they have any group therapy that I could get into.  I've always thrived in group therapy.

Worsening Depression, BPD, and CBT

My depression has gotten steadily worse so I called my doctor and they switched my antidepressant.  I'm now taking venlafaxine HCL (Effexor).  I started my first dose yesterday and so far only my sleep is interupted.  I was a little worried I would become manic because I had read in a couple reviews that other people have.  Not to mention it has happened with other medications in the past.  I'm not terribly excited that in most cases it takes a month to work.  I'm pretty sure things are going to get worse before they get better.  I'm already crying at the littlest hint of emotion.  If I could convince my brain to sleep all day, that's exactly what I would do.

I bought a puzzle in an attempt to give myself something to focus on.  So far I've got some of the edge pieces together. I've been spending time on a forum called Crazy Boards.  Here's a link to their site:

http://www.crazyboards.org/forums/

It helps me to feel not so alone when I read other people's experiences with depression.  I pretty much am alone here, except Monty, so it's hard not to feel that way.  They have a great thread about what makes you feel better when you're depressed and it reminded me that there are things I can do while I'm waiting for the meds to work.  Now I've just got to convince myself to do them.  I keep working myself up for exercise but I can't quite get over the edge to doing it.  Maybe this afternoon...  It doesn't help that the computer won't transfer to the TV.  I used to put YouTube videos up and do them but now the computer won't cooperate.

I talked to my ex last night.  He said that he misses me and that I need to come back to Cedar Rapids.  It made me start thinking about what kind of life I have here.  It's comfortable in that I don't have to worry that I don't have a computer or TV or car, I just have to work on getting them. It's lonely, however, in that I don't have much contact with anyone but my doctors, therapist, and Monty (and the cat).  I wonder if it would be better for me to be somewhere I have contact with people more.  But then I remember when I was in Cedar Rapids I didn't exactly let people in.  Not to mention that I don't want anyone to see me like this, before I lose weight, especially my ex.  Plus, I know Monty likes having me here, for the most part, and I don't want to upset him by leaving.  Really, moving back isn't an option, no matter how much I wish it was.  It's a "grass is greener" type thing.

I have also thought about getting my services back.  I most likely won't because I don't want to admit that I was wrong about not needing them.  It would be nice to have another standing appointment so I have some reason to get out of bed.  I hope to get into a routine so that I do have a reason to get out of bed.  I hope that routine will include exercise which leads to a shower every day.  My hygiene tends to get a little lax when I am depressed, but if I'm all sweaty I won't have a choice.  It's hard for me to write out a schedule because I don't know how the new medication is going to effect me.  That's prolly just a well thought out excuse, but it's true.  I should prolly just make a tentative schedule and try to stick to it.  It would help if my motivation wasn't gone.

I wrote to my friend Nathan when my neuropathic pain was pretty bad and I haven't heard back.  I wrote another letter that I'm going to send today.  It's possible that he never got it or that he's just been too busy to write back.  It just makes me worry about if I'm annoying him with my letters. I have an issue with thinking I'm annoying everyone and everyone hates me.  I think it's part of my borderline personality disorder.  I hate those thoughts because most of the time people's actions have nothing to do with me.

It's like when I was having trouble with the side effects of the Saphris (crashing in the morning) and Monty lashed out at me after a bad day at work.  I automatically started thinking I had to move out of here, that he hated me.  I felt like the worst person in the world.  Then he apologized and explained he had had a bad day at work and I was better in an instant.  BPD I think makes relationships harder than any of the symptoms of Schizoaffective disorder.  The psychosis and severe mood changes come and go but my thought patterns are hard to identify and change.

I try to be aware of my thoughts in order to use my CBT skills to help change them, but it's not easy.  Using positive self talk is hard to do when you are so convinced of something negative.  I'm struggling with my being on disability and seeing no end to it.  I feel like I've failed at everything I ever wanted to do.  I try to reframe that thought into believing I can make new goals to achieve, but the thought that I failed is just so deep in there that it's hard to turn around.  I miss CBT therapy because I really enjoy group therapy.  I enjoy individual therapy too, but group therapy makes you realize you're not the only one.  There's no groups around here that I know of.  Perhaps I will look into that today.

Well, this has been productive, I now have a list of things to do today.  Hopefully I will get it done.

Links, Worry, and Hope

I want to start with giving you the link to my new Google+ page for this blog.  It's pretty bare right now but I will be updating it every time I have a blog post as well as posting things I find relevant to the audience of this blog, mostly mental health related stuff.  What I put on the Facebook page will be the same as the Google+ page, but this will be easier for those of you who prefer Google+.

https://plus.google.com/u/0/b/108763547821771847034/108763547821771847034/

I also want to draw your attention to the other links at the right side of your page.  They are the pages I use regularly that I think people will find helpful.  There are forums for people with mental illness, the links to my and the blog's Facebook pages, medication related websites, other blogs I enjoy, etc.  If you let me know about your blog I will read it and possibly add it to the Recommended Links area of my page.  I'm considering a revamp of this area to separate the links into categories but for now it is pretty easily accessible on the right side of the page.

Now to true blog business.  I've been taking the Saphris for under a week with minimal side effects.  My constant dry mouth is gone, my legs have stopped swelling, and the congestion is gone.  The only side effects I've noticed are diminished appetite (yay!), restlessness after my morning dose, and that once I eat after my morning dose I crash for two or three hours.  I called my doctor's office about the restlessness and they told me to take Benedryl, which kind of guarantees the whole crash thing.  I basically have to plan my schedule to afternoons only because once I get up I go right back to sleep until at least noon.  I have tried caffeine to no avail.  I'm pretty ok with with the side effects after all of the other ones I've had to deal with.  Not to mention that my psychotic symptoms are in check.

I am suffering from some depression which I'm not sure is my illness or situational.  I get upset about how limited my life is and how limited of relationships I have.  Other than my dad all my relationships are over Facebook or text messages.  I daydream about going back to work or school, or basically anything that takes commitment.  I worry that this is going to be my whole life and none of my goals will ever be accomplished.  I worry I'll never own a house or make enough money to do anything.  I worry that I'll never pay off my debts.  I worry that this pain will never go away, although it has been better in the past few days.  I also worry that I'm going to never lose the weight that I've gained because of the psychiatric medications.  I don't feel comfortable making new relationships with my body the way it is.  I want to feel better AND look better.

I hope that taking the Saphris will help me with all of these things.  If it helps me to feel well enough I can start to do things again.  But I also know that no medication has worked for me long term.  All I can do is hope.

Struggling

After two weeks on the Fanapt, and my legs swelling, my gaining ten pounds, and congestion that ended in a sinus infection, I saw my psychiatrist and he switched me to Saphris.  I've taken it before and hated it because it makes your mouth feel numb and it tastes bad (you put it under your tongue).  But I've tried basically everything and Saphris is very similar to clozaril but with fewer side effects and no blood draw once a week, and we've been talking about trying clozaril for the last couple months.

I've been struggling with depression and irrational thoughts.  A death wish has been creeping up on me.  I feel scared whenever it's dark for no specific reason.  The reviews I've read of Saphris say that most people were helped in these areas by taking it.  We are not tapering on this one, just taking the normal dose.  My psychiatrist said that because it is absorbed under your tongue it works pretty fast.  I'm hoping it will also help with the pain, though I have no reason to believe it will.

When I saw my pain doctor last she said that my vitamin D level was low, but all of my other tests were normal.  I'm taking a supplement to help make up the difference.  There are studies that show that people with low vitamin D levels have chronic pain but they don't know what is causing it in most cases, as with mine.  I've been taking a multivitamin but I guess that's not enough for me.  I go back to see her next week.

I had the long awaited EMG test which showed no neuropathy or pinched nerve.  It's frustrating because now no one seems to know what to do.  I have a feeling the pain specialist will feel the same way.  The doctor who did the test said it could be fibromyalgia.  Something needs done because my back is getting worse and worse.  I am so fed up with nothing being done that I scheduled an appointment with a neurologist in Iowa City.  It's a long drive but I am already a patient there so it was the only place I could get into within a month.  I see someone there October 4th.

I felt so sick that I left therapy early this week.  My therapist is very understanding.  She doesn't think I'm making up all these problems and tries to give me suggestions to help me get something done.  Even though she's through Lutheran Family Services she never brings up religion because she knows I'm an atheist.  It's nice.

I've been pretty irritable lately and I feel bad about it.  I just haven't been feeling well so my patience has been pretty much non-existent.  People have been pretty understanding, which is nice.  I know I would have hated to put up with me.

It's nice and chilly out today.  It's the kind of whether I love, cool enough to need a jacket but no so cold you need gloves.  Maybe the perfect weather will help cheer me up.  Nothing else seems to be.

New Meds

I talked in the prior posts about the neuropathic pain I've been having and how my doctors think it is related to my medication.  My psychiatrist appointment finally came and he didn't say anything about the Latuda causing it, even though I had talked to his nurse about it the week before and she said that it was.  I convinced him to change my medication and we decided to try Fanapt.  I had never heard of it so I did searches for reviews from people who had taken it and they were mixed.  The psychiatrist said they usually start you out on a titration pack but the company doesn't have any right now.  I started taking half a 6 mg pill twice a day and today went up to a whole 6 mg pill twice a day.

So far I've had a lot of trouble feeling drowsy as well as having problems sleeping, dry mouth, congestion, and back pain.  The back pain is different than the neuropathic pain I have (still).  I also feel weak, but I'm not sure that is from the medication.  I have been continually not doing much because of the pain and all of these side effects.  It's frustrating.  I did go to therapy last week.

I've been considering acupuncture treatments for the pain if changing my medication does not help.  There is someone in town that does treatments for $15 per visit.  I feel I've tried everything else.

I see the pain specialist this Tuesday, as well as my therapist.  Hopefully the pain specialist will have some answers from the blood work she did last time.  I got my EMG scheduled for Thursday by calling around and finding who could get me in the fastest.  I have to go to Des Moines, but it's better than waiting longer when no one wants to do anything until they get the results.  If the pain doesn't get better soon and the test shows I have neuropathy (and pretty much even if it doesn't) I would like to see a neurologist.

The problem with seeing any doctor right now is that we don't know what side effects the medication is causing and what is causing the pain.  Hopefully I will level off soon with the Fanapt.  I've been having problems with very irrational thoughts that I am unable to control since the med change.  With me just changing to the higher dose today, I don't know yet if that will help.  I guess we'll see.

Dumbass Psychiatrist

I decided to call my psychiatrist's office yesterday to see if he could see me earlier in the day next week.  I run out of Wellbutrin the day before and I usually take it in the morning.  I thought he might be changing the dose so I didn't want to get a refill on my meds until I talked to him, hence, an earlier appointment would be good.  They didn't have any appointments available but his nurse said that the Latuda was causing the pain and to stop taking it.  I said that was fine but I needed something to replace it.  He said to just stop taking it and we'll talk about a replacement next week.  I told the nurse I simply could not do that.

I made a bunch of phone calls trying to find out what could happen if I didn't stop taking it until next week.  The pharmacist agreed with me not to stop taking it without a replacement.  No one else would give me an answer.  I went to my regular doctor and asked him to either give me a script for an antipsychotic I can take, put me in the hospital, or I'm going to keep taking it until I see the psychiatrist.  He said to keep taking it.  So, therefore, even though it is causing my widespread, neuropathic pain, I am going to keep taking it.  I'm also going to find a new psychiatrist.

The last time I saw the psychiatrist I told him I was having psychotic symptoms and he increased my Latuda.  I also told him about the problems with my back and legs and that they were doing tests.  Who in their right mind tells a person who's having auditory hallucinations and paranoid delusions to just stop taking their antipsychotic for a week?  When I've been without an antipsychotic or been between therapeutic levels before my hallucinations and delusions have gotten really bad, not to mention my brain just didn't function.  I would say a sentence and in the middle of it the words stopped having meaning.  I played a game and suddenly I forgot what I was doing and it didn't come back to me.  I'm just supposed to willingly let this happen?  I can't do that.

The fact that he wouldn't spend the 15 minutes to look at my chart so he could give me something else pisses me off almost as much as the fact that he wants me to just give up logical brain function.  I understand that the neuropathy could become permanent but no one understands what kind of hell it is to lose your mind.

I'm going out of town for a few days with my dad for his mother's funeral.  I'm not looking forward to how much pain I'm going to be in with the long car rides but I wouldn't miss Alice's funeral, even if I have to be in pain.  I'm also not looking forward to all of the emotions flying around.  I've never been very good dealing with other people's sadness, especially when they cry.  I just don't know how to act, I guess.

I had to go shopping for a swim suit yesterday.  It's not something I enjoy, that's for sure.  It doesn't help that summer's practically over and there isn't much selection.  Monty wants me to try getting in the hot tub at the hotel to help with the pain from the car ride there.  I don't really know how much it's going to help, but he insisted I get something to wear.  At this point I'm willing to try just about anything for the pain.  I know it seems like a contradiction, that I don't want to stop taking the medication that is likely causing the pain, but anyone who has had a psychotic episode has got to understand.

An Update

Here I am, at 5:00 AM, typing away at my blog.  When I woke up around 4:00 AM I had been having a bad dream and didn't want to go back to sleep.  I got up and thought to myself, "What in the world are you going to do at 4:00 AM?"  And here I am, writing my blog.  It's a good coping skill helps me organize my thoughts and makes me more aware of them.  It shows me blatantly where I'm being irrational.  Sleep is overrated.

Things haven't been going badly, if you leave out the pain and the hyper-anxiety.  On Monday I had more than one anxiety attack as a result of ruminating about my health problems.  I need to think positively and use positive self talk before I worry myself back into the hospital.  I may have to go back sooner rather than later anyway, so I can be safe if they have to take me off my medications.

As for other psychiatric symptoms, depression is still nipping at my heels.  The auditory hallucinations (noises in other noises) are there occasionally, and more so when I am really anxious.  I would say the medication change has been a moderate success, with room for improvement.  It's hard for me to know what way I want to go with my medications with all these other problems.  I dunno if I would rather switch anti-depressants completely or try upping the the dose.  I really just don't know.

I feel like it's just not time yet.  It's not time for me to go into the hospital yet.  I want to wait as long as I can, especially because I told the staff that I wouldn't be back for a year (trying to be realistic but positive).  If I have to go back for the problems I'm having now I'm not sure I want to go to St. Luke's, because of Dr. Larsen's heavy belief against medical doctors on the psych floor.  I trust him more than anyone with my psych meds but I don't want my physical problems overlooked, especially if that's why I'm there.

I saw the pain specialist yesterday.  I woke up at 3:00 AM and couldn't sleep because of pain so when my appointment came at 2:00 PM you would think I would have been tired.  Instead I was wired and my cuticles picked to the point of bleeding.  I forgot to tell her some important details but managed to remember everything before I left.

She was very nice and assured me that there could be many things that could be causing my pain and many of them are not serious.  She said that it is possible (if there is neuropathy) that it could be reversible.  I told her how scared I was and she reassured me and encouraged me to think of the best possible scenario.  The EMG, she said, is done by a doctor that only comes once a month for these tests.  She said the test would definitely tell us if there is neuropathy and they will do tests to see if something other than my medication is causing it.

She ran more blood tests and named off some medications that could help, depending on what we find.  She said that some types of arthritis and some viruses can cause the symptoms I'm having.  She gave me a different muscle relaxant that she said helps more with pain than the one I was taking.  She also said that the blood work my family doctor did shows my B12 is a little low and suggested I take a supplement.  I'm going back to see her in two weeks.  I had to reschedule my therapy appointment to go to this week's appointment, but I will see my therapist next week as well as my psychiatrist.  Maybe my psychiatrist will have some answers, and hopefully the doctors can all work together to figure this out.

I have been leaving out something important from my blog entries because I was worried about, well, I'm not sure.  My step-dad-like person that I live with has been going through hell as his mother died.  It seemed to me to come on rather suddenly and as soon as she went to the doctor she went into the hospital.  She had pneumonia and had a horrible time breathing and after they moved her to hospice it wasn't long before she was gone.  Alice was a great person.  She always treated me like family, no matter what.  She loved to talk and I wish I could have seen her one more time before she passed away so I could tell her how well she raised her son and how honored I felt that they allowed me to be part of their family.  Unfortunately she was a few hours away and with the pain I've been having I knew I would be very unpleasant after that long in the car, let alone sitting and standing after we got there.  Plus I didn't know when my tests would be.  She passed away peacefully and I will be making the trip for her graveside service on Friday.  I think the new medication will make it easier to make the trip.

Possibilities and Fear

I want to start out by thanking those of you who have "Liked" the blog's Facebook page as well as those of you who read this blog.  I know that some of you choose not to "Like" my Facebook page because it can make you feel vulnerable if you have a mental illness and it's not something you'd like to share.  I don't blame you because I felt the same way before I decided to go public with my illness.  For a long time my blog was written under a pen name because I was worried what people I knew would think if they read it.  No one should feel they have to share anything about their mental illness because it's nobody's business.  Anyway, on the Facebook page for this blog I put up inspiring quotes and links to sites that I think are good resources. Feel free to check it out:

https://www.facebook.com/MemoirsOfASchizoAffective

So I ended up calling my doctor to talk to him about his thoughts about what is going on.  His nurse suggested I just come in so I made an appointment.  When I saw him I felt guilty for taking up his time, but I also needed to ask him a lot of questions.  When I saw him last I was in so much pain I couldn't think about anything else.

He said that the blood tests all looked good except my CBC which he said was just a little messed up.  He said that I could stop going to physical therapy because I felt it was making things worse.  I explained to him my worries about MS and he said it is on the list of possibilities but it is rare so it is less likely.  He feels the most likely cause is one of my medications.  He said I may have to go into the hospital for a med wash depending on the results of the EMG.

I read up on the EMG test (which they have yet to call and schedule with me yet) and by some testimonials it is very painful.  They put a needle in each of your muscles and test the speed at which a shock goes through your nerves.  Some people that have had it said it's the worst pain they have ever been through, some said that it didn't hurt very bad at all.  As you can probably guess most of the people with a lot of pain during the test had more healthy nerves.

The prednisone is helping unbelievably with my pain.  My doctor said that it is a scary sign.  It's also making me sweat like crazy.  My hands and feet are on fire.  But with the way my back, legs, and my arm feel, I'd be willing to be sweaty for the rest of my life.  Of course I'm still having pain but I am managing it.  Unfortunately I think a migraine is coming on, and I can only take the prednisone for five days.  My doctor hopes it will have a lasting effect, but I am skeptical.

I did some research on all of my medications and it turns out that neuropathy is a very rare side effect of Wellbutrin XL, which I take every morning.  None of my other meds even hint at anyone having it as a side effect.  Maybe this is the answer.  I've only been taking it about six months.  I'm glad we might have the cause but I've tried so many antidepressants and this one seems to be working.  I don't know if I'll have to go in the hospital to change just this medication or not.

I've been looking into treatments for neuropathy and most of the information I've read says that it is rarely reversible. Acupuncture is one of the treatments people have found to work, but it is sooo expensive and most people said they needed several treatments for results.  There seems to be several options but none very effective across the board.

I can definitely say that I'm scared.  I'm scared there won't be anything they can do and that they won't even be able to figure out what's wrong.  I'm scared someone will have to take care of me sooner than I was expecting.  I'm scared because there's no one who can take care of me full time and that I might end up in a nursing home.

I guess I just have to wait and see what the future brings.

My (Physical) Health

My back pain has been pretty unbearable and I had no choice but to go to the hospital on Friday (the 10th).  They gave me a strong anti-inflammatory and it helped some.  They changed my daily NSAID to something stronger and gave me a muscle relaxer to take up to three times a day.  I've been taking them as prescribed with no improvement.

I went back to the doctor on Monday where my doctor said he believes it's neuropathic pain, which is pain caused by dysfunction or damage to the nerves.  My doctor is worried that my medications are causing the nerve problems because some psychiatric cause diabetes type symptoms.  He did blood tests and referred me to a pain specialist that I will see next week.   They are also going to do EMG tests which test the function of your nerves.  The blood tests came out normal and I have started taking prednisone (just this morning) in a very desperate attempt for some relief.

I have also had some problems swallowing for the last few months.  I have to take a drink after every couple of bites or whatever I'm eating gets stuck in my throat.  I just attributed it to the antipsychotic I'm taking and it hasn't caused me enough trouble to worry me.

When I go to physical therapy they say they don't find any muscle tension and the STEM treatment they've been doing is not helping.  When I was there last time my leg began to jerk for several minutes and then stopped.  This worried me some, but they didn't think it was anything important.  I told my doctor about it anyway.

After doing a lot of research on neuropathic pain I have found a lot of things that scare me.  Most of the information I've read says that this kind of pain is so hard to treat that many patients don't even get partial relief.  Another thing I found is that neuropathic pain is very frequently found in MS (multiple sclerosis).  My grandmother has MS and I have read that it can having a family member with it can give you a predisposition to having it as well.  Trouble swallowing and muscle spasms are also classic symptoms. They can diagnose it by your symptoms or by an MRI of your brain.

My grandmother has been in and out of a wheelchair for as long as I can remember, even when I was a little kid.  I am 25 and she is only in her late 60s now.  She has had so much pain and it seems unbelievable how she goes from so bad to so much better so quickly.  We always gets so worried about her.  It really scares me to think that that could be my future.

I'm very impatient about waiting for my pain appointment next week.  It has crossed my mind to call my doctor and ask him for the MRI to rule out MS.  He said we still had some options so I think I should wait until after the appointment and the EMG tests to talk to him.  I don't know if that is going to happen though, I'm just so anxious about it.

Depression is Affected by Pain

With the adjustment in my antipsychotic, I've had fewer and fewer psychotic symptoms.  My depression is slightly better than before.  My focus and motivation are still lacking and the hopelessness is really the only thing that has improved a little.

It's had to get past the hopelessness and I think a big part of it is that I don't have any plans for the future.  It's not that I don't want to make plans but even when I start to I usually stop myself.  Every time I make plans the end result is usually me in the hospital.  I get very depressed when  think I can do things and I can't.  The disappointment and guilt that comes with my failures usually spins me to a depression that I can't pull myself out of.  There's really so many things that I wish I could do, and I hope someday I will be able to do them.  I guess I am just so scared of the let down that it keeps me from trying to do all those things.

I've been having problems with my back and legs being in pain all day, getting worse at night.  I got the MRI of my lower back and it didn't show anything so I was told to just take my pain medication and it will resolve itself.  I got a massage, have been seeing the chiropractor weekly, have been using ice and heat, and the pain is just getting worse.  I went back to the doctor and he said that I couldn't take any heavier medication with the psych meds I'm on unless I am in a hospital.  The only thing he said he could do was send me to physical therapy.

The pain is really not helping the depression.  It's hard to have a good outlook if you are always in pain, especially when there doesn't seem to be a solution.  The physical therapist said there could be several problems but seemed surprised when the I told him the doctor had no diagnosis.  The physical therapist said there are some things we can do and I will be going there three times a week for six weeks.  That still doesn't give me a lot of hope with the pain still being there constantly.  I feel like there's nothing that's going to help.

The good thing about physical therapy three times a week is that I will not have a choice of isolating.  I tend to isolate as much as I can when I am depressed.  I don't have the motivation for showering and washing laundry so it's easier not to see anyone.  Not to mention it's just easier if I don't have to socialize, that way no one will know I am depressed.

I'm worried about having migraines though because I have to take extra medicine basically every day and I'm only supposed to take them twice a week.  I hate the injections I have to get when I get a migraine.  They make me feel exhausted for days and sometimes the first one doesn't work.

The Psychiatrist and an MRI

So on Wednesday I saw my new psychiatrist for the first time.  He seems to be pleasant and agrees with my policy to change things one at a time.  He asked me all the things I think a psychiatrist should on a first appointment, including how I felt about how my medications are working for me.  With the depression increasing and the psychosis just hanging around I suggested an increase of either my antipsychotic (Latuda) or my antidepressant (Wellbutrin XL).  I was leaning more towards the antipsychotic, but I wanted to see what he thought so I kept that to myself.  And, it turns out he was thinking the same as I was.  So far no noticeable side effects from the increase, but time will tell.

For the past few weeks or so I've been having pain in my legs and back.  It started out with my not being able to complete my exercise routine and ended in me not being able to do it at all, with constant pain which peaked at night.  I'm not supposed to take pain medication more than twice a week because I'm prone to migraines.  That includes NSAIDs like ibuprofen and acetaminophen.  Frequent use of pain medication, whether warranted or not, can lead to rebound headaches which can lead to migraines.  I had a migraine last week.  It was the worst I'd had in a long, long time.  They had to give me two shots because the first one didn't work.  This was a wake up call for me because I realized that my having to take pain medication for my legs and back had lead to my migraine.

I saw my doctor about the issue on Wednesday morning and he suggested it was a back problem, probably a pinched nerve or slipped disc.  He scheduled an MRI for yesterday to find out what the problem was.  I got the results today and they showed no narrowing or anything that they could see.  He had given me a script for an NSAID that releases at a constant level throughout the day, which leaves me less prone to migraines.  It is helping some, but I am still always in pain.  My dad insisted on me getting a massage ASAP and I have one scheduled for Monday morning.  Hopefully it will help.

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?

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.

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.

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.

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.

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/

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.

Advocating and Services

We had a meeting here on Monday about my services (SCL, IPR, case management).  Honestly they didn't seem to have much of an idea what the hell they're doing.  My case manager is new to her job as is the woman who will be my SCL worker.  I feel bad for the people who aren't as high functioning as I am who have to just hang in there while these people learn how to do their jobs.

Don't get me wrong, I've been new at my job before, but in these positions (the social worker at the facility, case manager, SCL worker) I feel like they lack the experience and education to just be let loose.  These people are crucial in some peoples' lives, some of them that can't stand up and say what they need.

I feel people would be more prepared for these jobs if there was more mental health funding.  Without decent funding these organizations can't hire people who have some idea what the hell they're doing.  People are hired to help the mentally ill that are nowhere fit to be because there's not enough funding to only hire people with a mental health background or schooling.  People are hired to pass medications without any idea about possible interactions and side effects.  I wish I could say every mental health patient is as familiar with their needs and their medication as I am.  That's why people like me need to fight for those who can't fight for themselves.

I have been trying to find ways to become an advocate in ways that are not detrimental to my own health.  Because of my strong need to take care of others and my guilt issue when I can't be there, I don't think being a peer support person would be good for my health.  I mailed letters to my congressmen asking them to support more mental health funding.  I emailed the University hospital's psychiatric research department to see if I could be of any help in any of their clinical trials.  I've been trying to find places to post links to my blog so people can find it and hopefully not feel alone in their illness.

It's discouraging, really discouraging actually, how limited I am in helping others.  I don't have much financial resources to donate to the advocacy groups.  I'm worried if I get personally involved that I'll start to feel obligated and not be able to say no when things get to be too much.  Not to mention that when I tried to volunteer it was a trigger for a depressive episode complete with psychotic symptoms.  I am very passionate about what people with mental illness deserve but I feel so helpless to do anything.  As much as I want to help people I definitely don't want to to get sick trying.

It's very hard for me to make personal supports without falling into my habit of helping till it hurts.  I find making relationships with professional supports much easier.  There are boundaries that keep them from leaning on you too much.  It's usually a very mutual relationship, with each person only contributing so much.  That's why I'm sort of looking forward to starting my services.  Not to mention they'll get me out of the house more than once a week.

I've started doing yoga in an effort to lose some of this weight I put on thanks to my psych meds.  If I am able to lose at least some of the weight I know I'll feel more comfortable going out in public.  My dad has all my senior pictures, which are pretty hard to look at.  I was going through I really rough time around then and the way I was looking at my future...and now I'm here.

I guess I need to find hope in the fact that I have come a very long way from when I had my onset.  I am much more self aware and I know my illness and that really helps me manage things in a better way.  As much as I'd like to jump into a million projects to help people with mental illness I know that it won't do them or me any good because I know my triggers.  Experience counts for something, right?

I want to close by thanking everyone who reads my blog and the administrators that have added it to their blog directories.  I also want to recommend a book:  Surviving Schizophrenia, the 5th edition, by E. Fuller Torrey.  It has helped me to understand so much more about my illness and helped me find new ways to explain to people what it is I'm going through and why.  I recommend checking with your library first, but you can find it online for around $15.  Here's one place you can buy it:

http://www.amazon.com/Surviving-Schizophrenia-Families-Patients-Providers/dp/0060842598

Also, if you haven't checked out my Facebook page dedicated to this blog, I've posted links to websites that have helped me along the way on there.

https://www.facebook.com/MemoirsOfASchizoAffective

Facebook...

I now have a Facebook page dedicated to this blog.  You can see it at:
https://www.facebook.com/MemoirsOfASchizoAffective

And you can like it on the left side of this page.  I am in the process of adding pictures, mostly quotes.  Enjoy.

Back to Life...

When I told the social worker at the facility that I was excited to get back to my life I guess I had forgotten what my life consisted of.  I'm not saying I'm not unbelievably happy to get out of that horrible place because I am.  I'm grateful to have a great place to stay while I get money saved up for a car and my own place.  Being here, in Webster City, the city I graduated from high school in, has brought back a flood of memories; memories of who I used to be, memories of past loves and friends, and memories about the way my mother was back then.

So much here has changed.  From what I can tell not many of the people I used to know are still here.  But it's the idea of running into one of those people, talking to them, that makes me want to never leave the house.  I don't know how much about my illness and life people around here know.  I know that if they ask me just about anything, or even just seeing me, I'll be embarrassed about what I say and look like.

When I lived here I was barely over 110 lbs and, I would venture to say, beautiful.  (I have the pictures to prove it.)  Since I started the psych meds, certain ones more than others, I gained around 70 lbs.  I've since lost very little even though my doctor had said I would go back to my original weight with the new medication I'm on.  And with the sometimes rapid weight gain I was introduced to stretch marks.  There is only a trace left of the person people saw back then.

Everyone changes over time, but in the past seven years I think I've changed more than a lot of people my age.  I have battled my illness and troubled relationships to a place where I have come to accept these things.  I accept them but I am still emotional about them from time to time.  I've been open with so many people about my illness; their reaction ranging from acceptance to abandonment.  But out of these people I've been open with, very close to none have known who I used to be.

When I was in high school I was very close to an A student until close to my early graduation when my depression became more than I could handle.  I was very independent and a hard worker and made more friends at work than at school.  I always had a drive to do my best.  I had assumed all the way through high school and for a short time thereafter that I would get, at minimum, a bachelor's degree and end up with a great job.  As you can see, that was not in the cards.

You can imagine that explaining why I'm back here, on disability, 70 lbs heavier, unable to have children, and living with my dad is something I have been avoiding.  I know what everyone says about my illness not being anyone's business and that I don't have to explain myself to anyone.  But when it comes to small talk around here what you've been doing since high school is usually on the top of the list.  I don't know what my dad has told people and I've considered just being vague, but honestly I have no idea what to say.

I keep telling myself there's nothing to be ashamed of or embarrassed about; that this is not my fault.  Still, small town stigma about mental illness is not something you can just forget about.  Hell, living in the city isn't all that much better.  Saying to someone around here that you have schizophrenia doesn't give them the message that you have a brain disease caused by genetic and biological factors.  People hear schizophrenia and they think about people talking to themselves with split personalities that are prone to violence.  Schizoaffective disorder doesn't have the same relatable ring that depression does.  It is alien, inhuman, to them.

On Monday my case manager and my SCL worker will be meeting with me to set up services.  I just cannot wait to explain who my worker is when we run into someone I know. "Hi, this is my worker."  Again I know that it is none of their business, but in a small town it's hard to hide anything.

The memories this town and this general area of the state bring back are strong.  I've been thinking about things day by day and pushing anything that's not the present out of my mind.  Now I can't leave the house without remembering a friend, an ex, a party I went to, a house I lived in.  I didn't take any of that into the equation when I decided to come back here.  I hope that making new memories will make this a little easier on me.  Soon I hope to get my first haircut since I've been back so I guess that's a start.

I always said I would never be caught dead on a motorcycle.  Well the idea of my dad being the driver bent my resolve and we've gone on many rides since I've been here.  I have to admit, while I still have my fears, I've caught myself thinking about getting a motorcycle some day.  A car and an apartment are pages above it on the list, but it lingers in the back of my mind.

Spending more time with my dad for the first time in a very long time has been good.  We get along well and I feel a sense of purpose by helping with his new business idea.  I feel comfortable here (at home).  I know he doesn't understand all aspects of my illness but I have services to help with that area of my life, not to mention my own knowledge and experience.  I'm taking my meds as I should (as I always do) and have my first psych appointment on Friday.

I am having a little problem with headaches, which I have had before.  I used to be plagued by them everyday with migraines a couple times a week.  My neurologist and I tried a couple of medications before the one I'm currently on.  It's actually a blood pressure medication that, for some reason, helps with the prevention of headaches and migraines.  My neurologist told me not to take pain relievers more than two times a week to prevent rebound headaches.  Now I've caught myself taking ibuprofen every day.  I've decided to scale it back to the recommended amount and if there's no change, give the doctor a call.

My hip and back problems are better to the point I've stopped taking the muscle relaxers and nerve pain medication almost completely.  Of course, trying to avoid taking them (along with the headaches) has increased my ibuprofen intake.  I may have to use the muscle relaxers a little more in exchange.

When I first got here I was having some psych symptoms, which I am attributing to simply the stress of the move.  Hallucinations were popping up here and again along with paranoia, but they have almost resolved themselves completely now that I am more settled in.  I have (of course) been using my coping skills as needed.

Speaking of using coping skills:  I had to change my phone number (again) because my mother started texting me, ranting about me saying things to my brother (that I actually didn't even say) and about how my dad poisons me against her.  I find it incredible sometimes how she, a grown woman, can't manage to take responsibility for anything.

That's all for today, more to come.

 

Recent Journal

Situational depression.  That is where I stand right now.  Perhaps it would be a good idea to ask to have my antidepressant increased.  I am beyond frustrated, beyond pissed off, beyond tired.  I spend so much time in bed and so little time doing anything else I think it’s getting to me.  I feel I have no one to trust, no one to confide in.  And yet, even though having those things would help my health, they find no reason to make it priority.  Perhaps I have too high of standards for people.  Even with that in mind, I refuse to lower them.  I need what I need, period, and I (and everyone here) deserve better than this.  We deserve to have people giving us medication that know something about them.  We deserve people who give a fuck about the residents here, not people preoccupied with covering up problems and worrying so much about losing their job they don’t even fucking do the exact job that they’re paid to do.  You’d think that with all this going through my head I’d be more angry than sad.  But, unfortunately, the sadness is winning out.  I’m sad because no one hears what I say, or cares what I say, no one takes the things I say seriously.  I am very quickly losing hope.

That is the basis for deep depression:  Hopelessness.  Another pretty good indicator that I will be heading down that path is a feeling of powerlessness.  Those two words sum up my feelings day by day here.  I am a single pawn being used in multiple games of illusion and hierarchy.  If there’s anything I hate more than being powerless, it’s being toyed with.