Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Tuesday, January 31, 2012

I wish he weren't always right

Dr. Mind told me yesterday that I should be aware that just because I felt a little less crushed yesterday than I had been that I was not done feeling bad.  This is hard enough to go through and then the part where it was thrown at me with no warning and the part where I wasn't doing all that fabulous to begin with all add up to this is going to be hard.

Like I said last night parts are hard.  Some things are ok in that I do them and they are hard but they are done.  And having them done feels really good.

Today was actually pretty good.  It was gorgeous outside and I went to my mom's and we took the dogs for a walk and had supper.  Non-frozen cooked food is an incredible treat right now.  And as I got tired the more symptoms I had to fight.  Which is frustrating.  Right now because I'm on such a tight watch for safety issues it is even harder because every time a thought of self-harm goes through my head I know that I'm going to be talking about it.  So for now we're up to 2 things to talk about Thursday, which is so frustrating to know in advance, even though I also know I have to talk about it so I don't go back to the hospital.  The hard thing is that for so long I had myself so firmly convinced that I couldn't tell anyone or I'd have to go to the hospital and would be stopped that it's really hard to turn that around into it's ok to tell, hiding gets you sent to the hospital.  I just wish there were a way and somehow time to make me not dread this part.  I think I need to talk to Dr. Mind about this, but with so much happening I don't know if he's going to feel it's a good time to take things on more that when I have to do.

I did just impress myself.  In grad school I saw one psychiatrist for a couple years and then he died.  So I saw this woman psychiatrist about once.  She suggested I was bipolar, I left, we attempted a med change and she changed her mind midstream, and then I graduated.  I'm trying to give every single possible doctor to give as much information as possible.  I managed to come up with her name without having to desperately search.  No clue how that stuck in my head but it did.  Chances are good those records are destroyed but I'm trying to show that I have been being treated for this for many years.  I'm going back 15 years since I know further back the records are definitely gone.

Otherwise if you get interested in my progress with all of this in the right sidebar there is a new page keeping track of what is done.

Have a good evening.

Unearned income

One of the really hard things about going through this is that I have to accept financial help that I never thought I'd need.  I have written about how hard it is to face that Dr. Mind is going to be losing even more money on me during a time that his own financial situation is plenty rough.  Some parts seem harder than others; applying for assistance for heating and later air conditioning (due to medical condition) doesn't bug me much.  Food stamps were a little more challenging to think about but I desperately need that; the amount is likely to be enough to feed me with very minimal cost to myself especially if I figure out coupons and go back to my grad school skills at knowing what stuff is safe to get from the ultra-cheap stores and what isn't.  I just finished applying for those and at the same time will have applied for some stuff that I am not eligible for until I use up a little bit of money.  So I'll probably have to re-do that form later.  And that form is not all that well designed, but it also gave me greater pause that I expected the food stamp application to do.  Why?  Because it asked what unearned income you have or have applied for.  This turns out to be disability through a job, social security disability, social security income (low income supplement) itself, etc.  And that struck me as odd.  Because I did earn disability through work.  They aren't going to pay me, but I did earn it.  And I've paid in the system for many years to be eligible for SSDI (social security disability).

One thing I managed to think to do while things were tough last week (or just before I found out how tough they were going to get?) was to open 2 credit card accounts using the income I technically have until I lose my job.  This was done to hopefully transfer my high balance high interest card to others as well as using tax $ to pay it down.  I haven't received a response yet but when I got into my mortgage webpage I had a new credit card line of credit.  So there's one balance transfer I can do soon.  I hope the other card is also approved.

And that is the hardest part.  I worked so incredibly hard to bring my credit up over the past few years.  And I succeeded, making me able to open new cards and shift things around.  Dr. Mind and I talked today about my struggle with my car.  For the job I had an SUV was needed.  I was nervous about the extra cost but I worked really hard and got the best possible deal.  I kept having to remind myself that I was making very, very good money and that I'd done well for a long time.  But buying a car was a bit of a gamble.  And now I have little choice but to keep it because it's a long way from being paid down enough for a trade to be the least bit effective; I'd just wind up with a cheaper car but leftover debt from this one added to the cost.

Because of the times I was off work I knew to never take income for granted.  But I also had huge expenses and so I never saved much.  Turns out that makes it easier to qualify for assistance but it does make me a bit sad.  I think that the hardest part overall of accepting that I need government assistance to manage is that I know how much I was making and it does not seem like one could possibly go from the salary I managed to negotiate before starting this job and then one day get a letter that says "haha, no income for you", even though technically I'm still employed.  The shock is finally clearing and the fact that I feel relatively comfortable with these applications (sometimes there is not a good answer) has helped.  Last week on Monday when I saw Dr. Mind I had only known for 45 minutes what was happening and I had sobbed the entire way to see him.  When he came for me I was still crying and shaking and pale.  He kept looking at me funny and asked if something happened on the drive up.  And then I cried for 3 or 4 days.  On Thursday he looked at me again and after asking how I was noted that I looked terrified.

I'm not terrified now.  I'm doing everything I can to save myself.  I may not succeed, especially if my initial claim is denied like so many.  I still am completely stunned and very sad that this has to happen the hard way.  I also know that this possibly makes it even more likely I'm not going to work more than the small amount SSDI allows.  Dr. Mind seemed surprised that I said that; I know he has thought this for a while and apparently he didn't know that I knew.  Not sure how that got confused.

Time to start the several hours of settling down to sleep.  Hopefully my brain will let it go tonight and not force me to get up to make notes about the disability application.  That would be a really big blessing.

Sunday, January 29, 2012


As I watch my finances reach freak out level and I continue to shift things around to make things work I am discovering how much I took for granted.  I just eliminated $11/month with subscriptions I basically had been too lazy to delete.  I took the time to ask and found out I don't need a phone line to have DSL, saving me about $60/month (I may have to add some cell minutes so maybe only $40 but we'll see).    I can't do much about utilities until I have gotten rid of a few financial things that prevent me from qualifying for aid programs.  I think I will qualify in a month or two.  But already I've cut about $100 and really won't suffer for any of it.  There are plenty of things that are going to be very hard and in a way the things I have no way to cut back and save money are the hardest to cope with.  Dr. Mind is going to see me at a very reduced rate.  This is very hard because I don't know what to tell them I can manage and I feel really bad accepting this but was told that I am well known there (it's true, therapists use my name and I don't know them; comes from being the longest term client and there for all but 2 years the place has existed) and that this is how they can help and I need to let them worry about that part.  Except then they asked what I can afford and I do not know what to say.  Not only do I really have no idea the amounts I'm sure of are so tiny to be pointless.    He brought up the other day that cutting back would save me money.  I am not remotely comfortable doing that and yet I am worried that suggestion came to help them not lose so much money while being kind to me.  The last I knew from Dr. Brain she wanted the twice weekly sessions to be very long term.  And practically they are important; I pretty much need someone to be asking me if I am in danger because I don't know I could volunteer that yet.  And the only way to get into my large quantities of meds is to have Dr. Mind give me my key.  That means if I make a mistake grabbing pills it's important to get in there soon, and it is also important to be able to put away new bottles of pills.  So giving up that support would be pretty bad.  Yet the twice a week thing is unusual, at least where I go.  Everyone seems ok with it because it works for me and time has shown this, but when they are getting into essentially donated time it's harder.

Some of the harder things are still coming, like telling the hospital I can't pay them $1500, or going to find out about food stamps, etc.  I am happy to have the programs available and know that this is what they are in place for, but it's strange to be filling out so many forms and trying to explain my income last year has no bearing on now.  I discovered while looking at some social security stuff that one way it's easy to tell how sick I've been is that I never made the kind of money I should have.  The early years when I didn't have trouble working (at least less of it) I was a new grad with a lower income.  Then the rest of it is broken by periods of disability, unpaid leaves twice each for a few weeks, and short periods of unemployment.  Plus there were a few years I didn't work full-time.

On the other hand years of meticulous paperwork that is both dictated by and scrutinized by the government have given me a hand with this application process.  About a year and a half ago someone from corporate reviewed my documentation saying that the only problem was that I was TOO specific and therefore wrote extra.  That is serving me well now.

I don't know how to describe how I"m feeling right now.  There is a way that I feel a little better.  I think deciding with my mom and for now we're working on my staying in my house until I'm ready to change that  helped. I don't love it here and if I were in a position to just decide to move I would, but I do not want to move when I would have to buy a house that would not be likely to be as nice as this.  This place has problems but I have spent vast amounts of money on roofing, windows, and doors and it is snug.  I could never afford to repeat that and the difference those 3 things made in my home is so great I do not want to leave and not be able to fix it.  There are other things but mostly I had decided to move in a sequence.  This would not be following that and the one thing I promised myself was that I would buy a home that did not need top to bottom remodeling as this one has.  I can't afford that and my decision making is different now.

While I am getting used to all of this I also feel like such a failure.  I know that I tried as hard as I could and that I did more than would easily be expected of me.  I know that 11 years (almost) is a pretty amazing run when I really couldn't hold a job or work very long without time off for illness.  I know that I worked on medications that make work extremely hard.  But I always thought if this happened I'd have more warning.  And while I suppose I could have seen back in the fall that I wasn't bouncing back I kept thinking that until Brenda the ovary issue got so bad that I couldn't stand it I had been doing fine and would resume that.

I have always tended to have a pretty good memory about patients.  It is because I was often supervising patients in 5 or 6 places when I was a new grad and nearly always at least 2 after that.  So I easily could have assistants asking me about 40 or more patients.  It was easier to memorize them.  But one thing that I've noticed is that my mind may have been preparing for this ending more than I knew.  The last weeks that I worked are so clear in my mind and I remember the last patients (the last month or two of them) in great detail.  While other patients from home health certainly stand out none stand out like the last group.  It's almost like I knew those were my final patients.  I just wish I'd been able to say good-bye.  One person in particular I'd worked with for months, had gone to her house worried that I couldn't reach her and discovered her having a stroke, and she was to be done at my next visit, which never happened.  Another person I had just immediately clicked with.  He will be the last treatment I ever did.  I was so anxious to see him through his upcoming transplant though and I know he had it but nothing else.  The last day I worked I saw him, had the next person stand me up, evaluated someone I had previously treated and knew wouldn't need treatment, evaluated another person who didn't need or want more than one therapy and started to see a final person who couldn't be seen because hospice had started with them the night before.  It's weird to look back and think that was the final day because it was atypical and nothing about it gave any indication that I wouldn't soon be doing the same thing.

Anyway I should go.  I think I have an appointment with Dr. Mind tomorrow but it's not on my appointment card.  I am nearly positive they said Monday though.  So I have a call in and if I don't have an appointment I'm hoping they can get me in.  Which means I should try to sleep.

One thing I miss desperately is taking meds and getting sleepy.  I hope that this will change soon.

Thursday, January 26, 2012

Wonder how this will go over?

I was up until 5 AM this morning because I am so overwhelmed and feeling I need to do this and this and this and this.  When I saw Dr. Mind I tried to get out of the class I'm taking because I don't feel up to it and would get more out of it next time it is run.  He basically said I could either reduce visits with him and go or I could continue the multiple visits and go.  I am in no way ready to not see him as much.  So I'm going.  But then I took my car for an oil change.  It's a long story but someone did massive damage to the thing that lets the oil drain.  I knew this and had requested the part yesterday but they sent the wrong on.  My car has been making a noise that turns out to mean "you're running out of oil idiot".  I did check that and it was fine a few weeks ago but I very nearly ruined my engine.  So then they had to call around for the part and drove to the next city to get it and then that was wrong so they had to drive back to the other city and back again (with traffic issues), and then it took 2 men trying as hard as they could to get the broken thing out.  They thought they were going to have to replace the entire oil pan.  So my quick oil change turned into 3.5 hours and so I missed class because of car problems.  That will go over well with Dr. Mind I'm sure.

He said I look terrified.  Sounds about right.  Things are moving along and that's good.  I have a meeting with social security on 2/6 which is apparently the next step of the application.  I have other appointments to make but they are waiting for Monday.  We are both waiting to hear from Dr. Brain.  She tried to call him after I left the other day but he was with the next person.  I see her next weekend and I think Dr. Mind is going to see if she can call him at home (which is not something he ever does, he is trying soooo hard to help) during that visit so we can all know what everyone else is saying/thinking.  Which is likely to mean they talk, I cry.  For someone who was terrified of crying days ago I cry a lot now.  Apparently this is stage one in the really fun grieving process that I'm probably going to go through.  And now that my depression is back to severe I'm on an even higher level of monitoring.  It's so much fun.

I got a whole new perspective today that helps immensely.  I said something about being concerned that social security will say that since I worked for 11 years I should be able to do so.  Dr. Mind pointed out that I have worked and repeatedly needed long periods of time off work and I have not held down jobs for very long at all.  And the reality is that in 11 years I have been off more than a year on disability over time and I've had 7 different jobs, and twice I was fired.  So not such a great work history.

And now I have to find something to eat (everything sounds unappetizing except grapefruit so that's the choice I guess) and work hard on getting to sleep since I have to leave about 8 to babysit and lately I've barely been asleep at 8.

Also, I'm sorry because I'm fairly sure this is just plain whiny.  I'm tired and cold and crying and it's not working well.

Stolen from Facebook

I really needed to see this today.  About 75% of the first column has crossed my mind today.  Too many way too hard decisions.  At the moment I think I am going to be packing my life into storage and moving in with my mom.  We can convert her upstairs to an area for me so I'll have a living room and bedroom and another area. That lets this house be put in order for sale quickly and hopefully it will sell fast.  Then she'll buy a home that I'll pay the mortgage on.  There are huge downsides to this emotionally but ultimately it eliminates so much money.  I have some checking to do on the effect on my eligibility for some benefits if I am not living alone since it could in theory raise bills by having another income in the household.  But her income isn't mine so I have to check on that.  It's tricky because I have a tax refund coming.  That refund will pretty much be my last money until things are better.  And yet it means delaying some things until that money has disappeared in the credit card void.  I don't know.  It is just a lot and it is happening so fast.

I also must say that a blog is an amazing invention.  I had to fill out some incredibly detailed medical forms from the time when I had whooping cough and was seeing the dr. constantly and was on and off many, many meds in a few weeks.  I also had to give dates of visits.  The blog provided all of that nicely.

Anyway, I forgot about clothes that need dried and then I need to start figuring out how I'm going to sleep.  I've asked for more meds because sleep is torture but so far I haven't heard anything from Dr. Brain.  Dr. Mind called me today to give me some information and I think to check on me and he said he hadn't heard either.  That part is really weird because if he calls and says "This is Dr. Mind (as opposed to First Name Mind) and I am urgently calling about a mutual patient, she'll know who" that's typically their code for Jen has a big problem.  And her email isn't set on not available.  So beats me.  Perhaps she figures it can all wait until I see her next week.

As I said before, don't worry if you don't hear from me.  Two big days.

Wednesday, January 25, 2012

Well then

Obviously this wasn't the best day of my life.   I've done several things like contact disability attorneys, look into some ways to help my budget, and painfully talked to my mother.  She was actually wonderful.  We're going to see how some things work out, but I think she's going to work another year and support me.  I am confused as to whether she was aware of the amount needed to keep things going and how long the wait is.  I believe she said she can manage the whole thing until I have income again.  I hate that she won't retire but she said that she honestly has felt quite uneasy about doing so and that one more year working is not going to kill her.  It still makes me very sad, but without her help I'm facing bankruptcy.  If she isn't able to help as much as I think she did then I'll file for bankruptcy just with credit cards.  I applied for 2 more cards last night while I still have an income (technically) and hope that I can spread some debt out that way.  We talked about selling my house cheap and getting out but I won't be able to buy another for years if ever and giving up the earned equity at this point in my life doesn't seem wise.  We talked about my mother possibly buying the house and renting to me, or she will assume part ownership of the house.  I don't really want to stay here but I also think that it is better to refinance and stay put.  More than anything I do not want to wind up renting.  I absolutely hated it before, I was constantly stressed about damage and exceeding pet limits and noise from everyone around me and now it would be even a bigger issue with all the things that cause asthma.  I truly think this is not the time to move.  My mom isn't going to agree to that but the bottom line comes down to I am not well enough to maintain the house in viewing shape.  The other option would be living with my mom until the house sold with my things in storage but that does not sound good at all.

I also did some reading on the social security website and I think I am going to do the first filing without a lawyer.  75% of claims are denied initially and at that point I'll seek help but the first stage is pretty easy and honestly would require me to do the hardest parts anyway.  I do have a few things to clarify with social security tomorrow but if I am reading correctly I can do this first part myself and that makes me feel better.  If I would get through in the first round that would save me 25% of the back-pay they give and if it's for the easy part that I can do myself I'd rather keep that.

I can't seem to settle down, but it has been 2 tough days and I'm just glad that I feel a little control.  I hate that my mother is doing this but am so thankful she can.  I'm doing everything I can to cut costs, like cutting my cell service to the minimum, hopefully my telephone/dsl as well (I wish I didn't have to have a landline but  DSL is my only real internet choice).  I am hoping to find a way to lower my car insurance a bit without running 50 credit checks and then finding out lower auto means insane homeowners with a lot of these places.

Anyway, I just yawned.  I hope that means sleep is coming pretty soon.  It is a bit hard to just relax at the moment.

Monday, January 23, 2012

We'll start with the rainbow

As I've said very often when something hard happens there is a rainbow.  Today there was a gorgeous, all the way across the sky, brightly colored rainbow for 5 miles or so of my drive.

That rainbow came immediately after I was notified that because of a hidden pre-existing clause on long-term disability I am unlikely to get those benefits. I cannot work at this time. For what I read it is quite unlikely.  Right now it looks like I will need to file for SSDI, may well face bankruptcy, and today I got my last check.  I do have a very large tax return coming and that will get me through a few months.  For the most part I am facing some really big problems.

Dr. Mind called Dr. Brain while I was there; if they've connected it has been since I left.  I have cried until my eyes feel like popping out.  Somehow I need to go make some supper.  I didn't eat lunch because the horror of that letter made me forget that I needed to stop.

That rainbow needs to come through for me.  I truly thought this was all addressed.  I feel sick with horror.

Sunday, January 22, 2012

Sleeping. Nobody is home

I haven't been extremely chatty the last few days and doubt I will be for several more, assuming things continue.  I am falling asleep a little bit (not enough to really matter except in my own mind where 2:30 is MUCH better than 3, and 1:30 is an all out miracle) earlier and aside from getting up periodically for fluids or cat food I am sleeping 12 or once more hours.  It would be ideal if I were sleeping at bedtime, not the middle of the night.  But after so long without sleeping much at all this feels so good.  I desperately needed a few nights (and days) of deep sleep.  It makes coping with everything so much easier.  So I'll be continuing to sleep as much as I can whenever I can, until a doctor tells me this is bad.

One thought for the day:  Ending my career early is obviously painful.  It's THE THING I most hoped wouldn't happen because of illness.  And adjusting to it, as you've noticed, has been really hard.  What finally occurred to me is that my mother is retiring in a few more months.  And she's had 2 full careers, achieved a great deal, and loved what she has done in both careers.  Yet even with 45 years of the 2 careers and a tough year or two at the ending she is sad to see it come to an end.  And she will still be doing some professional work.  On the other hand my ending is abrupt and not what I want or planned for.  Nobody will celebrate the end of my career. For me it is not a transition as much as a huge ending (which will of course transition to something else although I have no clue what).  I think I really wanted that 65-70 year old retirement thing.  Not a party, but just the thing where you are celebrating the end of many years of hard work.  Even though I know that my illness made me work much harder in 11 years than many do in 40 this is still sad and is another thing that isn't the way it is "supposed to be".  Oh well.  Other things will come along.  I truly hope to babysit my niece once a week once I feel a little better.  And I am for sure watching her this Friday!!  My sister actually specifically asked me.  I decided to meet them at my sister's work and trade cars with her and spend the day in the town where my sister works instead of driving another hour to her house.  It's going to make nap tougher but is easier on me.  I haven't been able to babysit since late October/early November.

And with that I must go as I've been washing blankets for hours and either the washer got mad again or it's finally ready to swap out.

Saturday, January 21, 2012

The language of suicide

One thing I've learned that I didn't want to know in the last month is that there is a lot of terminology related to suicide, most of which I didn't know.  I know "suicidal ideation" (thinking about it); "plan" (a step that means it's really serious); "intent" (willingness/ability to carry out that plan".  I was taught before this that there are active suicidal thoughts "I want to take every pill in my house" and passive thoughts "I wish my lithium toxicity had killed me".  In the hospital they replaced the passive with the term death wishes which I hate and refuse to use unless forced.  Yesterday I learned a new one. Dr. Mind about about "suicidal gestures" and I had to ask what that was.  It means doing things in prepartion to a plan to die, like getting bills paid, setting up the scenario which is chosen, making a will, writing a note, etc.  And then he said or something like putting a gun to your head like a trial run.  I think I looked at him like "yeah right" which is when he pointedly added "or keeping pills where you can stare at them and plan".  Um, yeah.  No longer feeling smug that this wasn't me and point taken; what I was doing was plenty dangerous.  I suppose the time will come when we have to talk about that even more.  I do not want to go through life at an even higher risk than I was before, although my risk moved up because of this.

When I was in OT school I remember being taught in general how to react if a patient said they wanted to die.  You were to ask if they had a plan, if they had access to whatever danger they were discussing, and you were to get as many details as possible from them, and then you got them help, immediately.  You documented in as much detail as humanely possible.

When I worked in psych I had to do this several times.  The worst then would be that people would ask you to keep what they were telling you a secret before they'd say anything and I'd have to explain that while I would keep anything confidential that I could if they told me they were suicidal or wanted to hurt someone else or if they told me that another human was in danger I could not keep the secret.  I don't remember most of them being too reluctant; I do remember there being a lot of paperwork and in general not a lot happened because for the most part our patients were in a pretty safe environment.  They just were on increased monitoring and the psychiatrist would be notified along with the patient's doctor.  Sometimes meds were given, sometimes not.

A few years ago I had a patient who was very depressed, cognitively intact, and who had been a very successful community member and suddenly found himself to be old and sick.  He struggled hugely with this. This happened to be someone that I got to be close to.  One day he laid out a detailed plan to kill himself upon leaving the nursing home.  He was very serious about it.  I got the usual information and told the nurse. Who actually laughed and told me he certainly wouldn't be doing that in the nursing home.  Ok, but what about home?  It took me several days to get them to listen and get a psychiatrist involved.  By all rights he should have been sent to gero-psych the day he told me that.  After that day I had to argue because the family had gotten rid of the guns in the home so he was safe.  I had to point out to someone you can't make a house totally safe unless you are an expert, what with meds, cleaners, drain openers, razor blades (even after scouring my own home for those 3.5 weeks ago I found more yesterday), etc.  They kept insisting he'd be fine until the psychiatrist saw him in a few weeks.  I don't think anyone ever thought about what it feels like to be suicidal.  Having recently been quite suicidal yet being kept from harmful things in the hospital I can say for certain that while it is good to know you are safe because you are being protected it is also frustrating because you know that a few lies and you're home and able to do whatever you want.  Even if you decide in the hospital it isn't what you want as I did it is frustrating and scary to go home and suddenly have to be responsible for yourself again.  As Dr. Mind told me on the first day home he can hold on to every dangerous thing I own and that doesn't mean that I am really safe.  People who are suicidal need to be helped with coping skills rather than just given false security than only lasts while in some facility.

I don't think it is possible to understand the desire to die that is so strong you are willing to make it happen yourself.  Even though I've had suicidal periods off and on over the years I didn't completely understand that until the last month.  I think that's why I find all the terminology to be weird.  Terminology just helps keep in distant and at least in my experience it is vital to look closely at the feelings, the causes, and the solutions.  Even when the solution is very basic, as mine currently is:  lots of therapy, lots of monitoring, limited access to unsafe items, increased meds.  Big words do not change any of this.  In fact, for me, the most vital thing in staying safe is being held accountable for telling through frequently repeated questions.  I can't say that would have helped much 6 weeks ago as I may have at least tried to lie if asked directly, but I also probably would not get away with my lies.  The lying I did get away with was not so direct.

One of the sessions of my class is on suicide.  I am hoping to read that chapter ahead quickly and I may ask to be excused from it.  I am not sure I'm ready for that.  We'll see.  If nothing else I know lots of phrases now that should help!

Friday, January 20, 2012

Will I publish this? Let's see

Obviously you won't know if I don't.  It's just weird to go into a post and know what I'm going to say but not if I'm going to share it.

With the sleep last night and lots of quite today and a very calm weekend anticipated since we're getting snow and ice on top of snow from yesterday I actually feel a little more peaceful than I have in so long.  But the weirdest thing?  I mainly feel this way because it really was good to go through things for the long-term disability thing Dr. Mind has to fill out and admit to what I can't do.  He was worried that if I even got my hands on this form that my feelings would be hurt.  I told him I know that I'm pretty limited and am not going to be upset by having that confirmed.  There is so much and I judge myself for not being able to do simple things.  But when I listened to myself yesterday it suddenly made sense that if I can't do A I also can't do B.  My example at the time was laundry.  It often takes me multiple washings to get a load done because I start them, forget them, they stink, I re-wash once or twice and even when they finally are dry I usually forget to retrieve them until I wonder why I have no socks to be found.  I didn't really explain all this to Dr. Mind.

Usually it is better to focus on positive (ie, yay, I slept).  But a realistic picture is good too.  So I thought I'd list things and yes or no them.  This is how the insurance form is.  I am, however, going to make some places that the answer is no because I can't consistently do it but I am doing it some and you will see (if I let you read this) that I need some sort-ofs to make up for a zillion no's.

So, here goes:

Laundry sort of
Vaccuming No
Picking up sort of
Mailing things no
Dishes No (bare minimums and don't use many)
Cooking No
Mopping No
Changing sheets Sort of (needs to be more frequent)
Showering Sort of (better than pre-hospital but still not daily)
Taking Night meds Yes
Taking morning meds Sort of (forget a lot)
Cat feeding Yes
Litter boxes Sort of (forget until they smell)
Going to the bank sort of (tend to hold checks as long as possible)
Knitting yes
Reading sort of (children's books)
Grocery Shopping sort of (always forget things, difficulty with decisions makes it take forever)
Car care No
Getting Dressed sort of (tend to hang out in pajamas unless I have to do otherwise)
Hair care sort of (see above)
Oral hygiene sort of  (forget sometimes but better than other things)
Med management sort of (hard to remember to place orders)
Paying bills sort of (tend to be right at deadlines; car payment late partly because I forgot how my online banking works)
Working No
Making appointments No
Phone calls No
Going to appointments Yes
Wormie care No.  Neglect is showing in my population.  Probably will have to start over.

Undoubtedly there are more.  But I am strangely ok with this huge list of things I can't do (more or less).  Because if I see this and know that well me couldn't stand this stuff it is easier to know I am not well.  Probably makes no sense to anyone but me.



And by sleeping I mean asleep at 1:30, awakened by the cat a lot of times and fell straight back to sleep, woke in the morning and realized I was tired so slept some more, was awake for a while this afternoon and instead of strictly adhereing to "no afternoon naps" I passed back out for another hour.

So all it takes is driving home in a snowstorm for hours after a great discussion of how sick I am and paying half my annual income (not really) for a medication.  I can repeat that easily, right?

I actually feel more relaxed that I can remember feeling in weeks?  Months? A year?

Thank God

Thursday, January 19, 2012

The sad, green stethoscope

My time with Dr. Mind today was hard in a new way.  He has paperwork for long-term disability, a lot of it.  He wanted to go through some things with me and then he's going to contact Dr. Brain so they're filling things out consistently.  Pretty much what he wanted to be sure I knew was that he has to mark things as very low and that because of how the assessment is done I will come out looking extremely impaired.  I know this, it's not really a secret that I'm very limited in what I can do, but he wanted to be sure if this assessment was ever shown to me somehow that I didn't think he was picking on me.  It was hard because we had to go through many things that I had to admit that I struggle with or am not able to do yet, and many of them are pretty basic. Again, I know I can't and he knows I can't but having to verbally admit that it is still incredibly difficult to shower as often as I should is tough.  And looking at my life is kind of sad.  One of the things that is used to help show how impaired one is and compare that to the previous year is called a GAF (Global Assessment of functioning) score.  You can read more here.  I have to ask him about this because I think the number he told me I would be at is too high (he said around the low 40s but since I can't function at work, socially, with selfcare and my mood is severely impaired I think I probably am lower and if not I'm curious why).  As I told him, I know the picture is not pretty and I can face that.  I just can't move past it.

The other thing that was hard (true, but just sad to hear someone else say) was I had told him that between crying quite a bit since my last session and getting a little more/better sleep last night and making myself laugh a little I felt a tiny bit better.  Because of what we were discussing it seemed obvious that little blips of feeling better have been the only progress I've made in recent months and unfortunately there have been enough blips that even Dr. Overly Optimistic Mind isn't reading a lot into it.  I think he felt that the crying may have made me feel just well enough to have that time moment of betterness, but at the same time he kind of said that the tears are good but that I probably am going to have to stop distancing myself so much that much of my crying is my discovering that my face and shirt are wet and my nose is running.  Doing that is just another sign of my protecting myself, although crying at all or feeling angry at all or sad is good and I assume a positive step.  Oddly Dr. Mind seemed to know that I left more upset that I knew the other day and I think he left things open for me to cry some since it wasn't happening otherwise and I need to do this.  He also told me if I really want to kick my mother it's ok. (joke, but another sign that her attitude is about as annoying as I think it is).

I killed time in the city and even called my mom to have her check the forecast because I wasn't sure I was safe to stay for my class.  I was on my way from the pharmacy at one end of the city to the class diagonally across it and got a call the class was cancelled.  Fine, I had one more quick stop to make that I'd intended to use to kill the last few minutes before class; I just needed some fruit.  The roads were covered but not bad.  20 minutes later (30 at most) there had been massive snowfall and I drove home in low gear going 15-20 mph most of the 60 miles.  It took an hour to get out of the city; normally from where I left would be 10-15 minutes.

While I was bringing groceries in from my trunk I realized that I had everything out but my therapy bags and that I really needed to take the opportunity and make sure that the only thing in there that belongs to me, my personal stethoscope (read:  not cheap), was out since someday those bags will go back to the office and I've been putting off looking inside to retrieve it.  So now I have a green stethoscope in my living room and the gravity of the low functional ability we talked about plus the only reason that I would bring that inside, risking not having it at a patient's home, is that I don't need it in the car anymore.  Which was sad enough to bring on a whole lot of painfully sad thoughts and tears just below the suface (I imagine I can expect to cry in the next day or so when I least expect it.)  That stethoscope represented so much though.  It had a lot to do with feeling I was independent and competently able to identify medical issues.   It meant that I was doing something that I felt was worth the investment into owning my own, because the company provided one was not very good and I couldn't hear well through it.  It was a sign of commitment to home health as outside of school when I had a very cheap one I've never needed one.  It is something I won't get rid of.  I have no idea what I'll do with it but it is somehow symbolic of a time that I really enjoyed in my life.  (Also, I want all the therapy crap out of my car.  It takes up huge amounts of space and is doing me no good.  If I bring it inside I figure that will be the day they want it back.  It's strange what causes the most hurt; digging through my bag of vital equipment was physically painful despite knowing for months I needed to retrieve that stethoscope.

I have absolutely no idea what the other thing I meant to say was.  Guess the stethoscope threw me more than anticipated.  More later I guess.

Wednesday, January 18, 2012

Good to know

Sometimes when recovering from a bad period it can be really hard to share tiny good things with anyone (blog, friends, Dr. Overly Optimistic Mind) because they are positives and hopeful and all kinds of good stuff but they are not a sign things will be better tomorrow or next week, just that things are a little better for that moment.  Dr. Overly Optimistic Mind and I have had a couple battles about that because early on something tiny would happen, he'd want me to believe it meant I was getting better, and I knew from experience that it was nothing more than I had a good 30 seconds and eventually it will be 45 seconds.

But after much crying the last couple days I actually just made a joke.  Not an overly funny joke, and it's political so if you don't like it please don't hate me, but I read the Duggars are campaigning for Rick Santorum and it occurred to me that he'll easily win one state then and I giggled.  

There were a few laughs on my birthday with my niece.  We skyped and it was awesome. My hair has always puzzled her because the curls are something she's only seen on me and because my hair is long and heavy and curls in my eyes sometimes I wear it down, I wear ponytails, and I wear buns (which are now almost too heavy to do without hairpins so those may be done).  I have an adorable picture of her comparing my hair to ruffles on her shirt.  This time she immediately got it:  "Ponytail!" and showed me her ponytails.  Then she saw my mom's ring and said "RING!"  I asked if she had a ring.  "yeah" followed by scuffling and her dragging my sister's hand with wedding set into the picture.  How smart is that?  Then my sister told her to say happy birthday Jen and instead she grinned mischeviously and said happy birthday to my mom.  My sister said to her "No, Jen.  Grandma's birthday is in SEPTEMBER, a long time away."  She just giggled....One dog was in the screen and she kept asking for the other until we got him in the picture.  She's adorable and smart and developing a sense of humor all her own.  Her father has a dry sense of humor that at times kills me and I think she's heading the same way.

I just laughed again at Michal sledding because she should.  Probably true out there.  I must admit though that there is a sledding hill near here that is something I never got to sled on: a big hill that is cleared.  We sledded (I guess that's a word?) down a hill that was a pasture and straight into the woods.  The trick then was how far you could go without hitting brambles or trees.  We had contests.  So I suppose someday I should get a sled and during the day when the kids are in school I should fly down that hill.  But probably not until my ankle is repaired if that's possible because I don't want to have a forced repair because I slipped and fell down this huge hill on my butt.

Anyway, there are a few good moments today.  Hopefully tomorrow there will be more.

Sharing the wealth

I posted a while back about coming home from the hospital to find my cat had pulled hair off her belly and had blisters from licking because she was anxious while I was gone.  I've given it a few weeks per the vet and she is still doing it every time I'm gone for a few hours or more (the longest I go is 8 hours but she panics I think).  So I called them today and she's starting on an antidepressant.  I'm excited though in that the medication is a gel that I dab in her ear and not a pill to shove down her throat.  Since she also gets confused/anxious in the night sometimes I'm hoping this will be a good thing for her.  On the other hand I am slightly amused that because I'm bipolar my cat needs to be on psychotropic meds.  I find it even funnier that we'll both be on transdermal antidepressants (my patch, her gel).

Anyway, I'm having a great time going around the internet and changing my passwords.  My information was among that taken in the Zappos hacking and they recommended changing any password similar to the Zappos one.  I was fine with one password with them but I don't remember what I used with my very old account that was hacked along with the account I've been using for several years.  So I'm changing everything to be sure.  I hate changing passwords so I don't do it nearly often enough anyway.  Maybe this will teach me.

Ugh.  So not what I needed at this moment in time.  I am also now a bit afraid to use Zappos, yet I LOVE Zappos.......

Monday, January 16, 2012

New Rules

It has taken me many hours of thinking about my conversation with Dr. Mind to understand one part.  It also took a lot of tears; the number of times I've realized I had tears running down my face today has been amazing.  Even driving home the plan was to stop and buy fruit.  I couldn't because I kept realizing I was crying while driving and I'd rather not cry in the produce department.  After he realized what I meant about feeling I had broken the rules and failed and I think (but am not sure) that he also figured out that I feel like I failed because after so many years I got worse when everyone has put so much extra effort into me.  I've never heard him speak quite like he did today and I can't explain that so well.  But he tried hard to take the guilt and shame away.  So much of it is because I promised him years ago that if I had a desire to hurt myself that I would tell him.  When that truly was tested I did not keep my promise.  So now we have a new system, that I merely need to say yes or no honestly when he asks me and he will ask me much more frequently than in the past.  I honestly don't know if I would have answered differently had he asked me about it a few weeks ago.  But it is much easier to answer yes or no so I am hoping that this is a positive change in the system, especially now that we know precisely how embarrassing I find it to talk about this.  I still feel sad and guilty that I did not do what I knew to do, but I admit it helps to know that the anger I figured he had to feel just wasn't there and it seems mostly he just feels bad for me.  That too is sad but it is clear he feels I'm sick and he's not sure what will happen but he seems willing to keep trying everything he can.  I didn't think he had given up, but I did think that he would not be happy that I broke the rules.  I'm glad that conversation happened.

Today, quickly

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I don't have much to say tonight.  I saw Dr. Mind and cried for 20 minutes or so about the changes in my life and how painful it is to see the things that are changing or gone from my life.  And we accidentally went into something I needed to hear but which is still making me cry.  I finally brought up how angry I am that I can't make eye contact since I worked so hard to get to the point I could do that.  And suddenly out it came how awful I feel and how I keep expecting the doctors to be angry because I promised to tell if I was becoming unsafe and I did not do that.  I don't think he had any idea I was feeling like that.  A lot of reassurance later I still cry if I think about it but at least finally that came out.  He seemed to be fairly horrified that I've been thinking this; I think he thought my ashamed thing was mainly because of my mother and her guilt.  Which is a bit part of it (yesterday it finally occurred to me that she thinks I went to the hospital to avoid Christmas) but I also feel so guilty for not following through with the one promise I have ever made to him.  It seems he feels guilty for not asking me about it more a month ago.  I hadn't thought much about him feeling that he didn't help enough when that happened because I don't think it was him that didn't do things.  But it seems he feels bad too because he doesn't know how to make this all better right now.  And I know the reaction to my admitting that I am so upset because I lied was real, not just some generalization like "can't change the past".

So I have no idea what to do with this information but at least I went a lot farther than in the last few weeks today.

Time Travel

Becky asked:

When you were spiraling down last Nov and Dec, if one of "us" here would have asked you point blank if you felt suicidal, would you have answered honestly? Again, not sure that is an appropriate question, so ignore if you want.

The answer is no.  There are a few reasons.  It's hard to explain but I was living 2 lives.  Part of me was ready to give up.  I don't think that part had a lot to say.  And on the other hand I was aware that I was having passive thoughts (wish I could die) but that happens a lot.  I think I was protecting myself from the scary things I must have been thinking and it wasn't until I was not fighting to stay safe (in the hospital) that I discovered what a dangerous situation I'd been in.  It's very hard to explain this because my memories seem to have 2 levels to them.  The suicidal stuff was of course part of the depression, but it's almost like the depression was severe enough that I was getting pushed closer and closer to the edge of a cliff but I was mostly blinded by the lack of sleep, profound sadness, anxiety, and horror at how I was living.  I did not look too closely at the scary stuff.

Sorry I can't make this make more sense.

Sunday, January 15, 2012

6 years of blogging

Is anyone besides Michal unable to get the comments to open and work?

I made it through my birthday although I did realize that my depression has gotten much worse in the last few days.  Dr. Brain is aware and Dr. Mind will tomorrow.

I went out to dinner and skyped with my niece for a bit and that took all the energy from today (I've had little sleep in 2 days.  Thankfully Dr. Brain said to quit trying to get my lithium level done for the moment so I can sleep when I sleep and not try to get up.  She seems to agree that a sleeping pill is not going to do a lot of good when I'm not sleeping because I'm sad).

Becky asked about something I'd said about looking back.  When I say that I'm meaning I am going back to where I was a long time ago.  10 years ago I had no real sense of how I would be able to keep working and managing with uncontrollable symptoms.  The different was that bad then it was feasible to just do it, to borrow from Nike.  For a number of years I could push through through the force of my personality and I was ok.  My symptoms were not well controlled and were really hard to manage but I could manage enough to succeed.  I thought that if I could get through those early years that whatever I had after that I would retain.  Instead I've taken steps backward while life has gone forward and now I can't do that barely managing but doing well enough to have a career.  Backward isn't the right term really I guess because I was not ever here.

I see the recent years as having 1-10 rankings.  Age 34 was a 10.  The stresses were just normal work or life stuff and otherwise I was indistinguishable from others.  A year ago was a 7; things were impaired but it was physical and good things awaited my physical recovery. I was positive that I just had to get healthy and I'd be back to that 10 because there really wasn't anything to indicate that I would not recover from surgery and be fine again.

Why I was so upset the other day is that I looked at the future.  Right now I have psych appointments, mental illness class, and nothing else on my calender until vacation in November.  And I can't just fill things up because right now handling 3 appointments most weeks and 4 week I see Dr. Brain is enough.  But I have never in my life no matter how sick I was had nothing coming.  Even when I've not worked I always had work ahead of me.  Right now it feels like my future is so very limited.  I know that we'll keep doing things to help my depression lift and that I'll someday feel like scheduling some babysitting days with my niece (I'd like to go down and babysit every other week one day when I can do that.)

It just scares me.  In the past even when I've been unable to do a ton there have been things that were being given me as nuggets to look forward to.  I've been able to see progress and know I can at a minimum try working.  This time trying work again is not even on the table.  It's not been eliminated but it is goofy to talk like that is coming when the reality is that something changed in me.  I supposed I shouldn't say I went backwards as I have never been here before.  I did, however, get much sicker and then the part I'm mostly fed up with myself about is that I was so insistent it would be fine that I did not catch that nothing was giving cause to look forward.  The sheer relief Dr. Mind showed when he knew that I was aware that this may be the end of the tracks for the life I've had in the last 11.5 years was huge.  Months ago he was suspecting that I had reached the end of the line.

The one thing with bipolar is that it is not static.  At some point a new medication may be released that gives me some function back, but we will always be more cautious with stress levels and if this depression can be lifted (and I do think that will happen) then we will figure out what amount of stress I can handle.

The letting people down thing had a bit more relevance when I was in the hospital.  I know and they know that I did not cause things to get worse.  However what I am fighting with shame over is that I have a very few rules I life with.  One of them is the promise I've made so many times and up to now has more or less been kept:  If I felt like hurting myself I was to get help immediately.  Suicide is kind of a creepy thing and when you feel tremendously depressed you often are too ill to act on what you feel.  The danger comes when either you impulsively feel "THAT was the last straw" or when you start to have more energy (this is particularly true for me because I usually leave depression and head for mixed states where I get little bursts of energy) then you are at greater risk for killing yourself if the suicidal thoughts are serious enough.  It's hard to know what serious enough is and for that reason I've made promises that I will tell about anything of that nature.  As it turned out when I was somewhere safe and talking to other suicidal people as well as to Drs. Mind and Brain, I not only had not told about thoughts that had become to be the main thing I thought about, and I truly had no ability to disengage enough to see for myself that if I was laying in bed staring at a particular bottle of not-incredibly-safe meds knowing that if something better didn't come along that I could ingest those anytime I felt done.  Trying to decide when I was done bought me enough time to get to the hospital, but it still took a number of days before I was willing to admit that not only did I lie about the feelings I had I also lied about something much worse, which was that I had a plan of how to die and I fully intended to carry it out the day I felt unable to handle it. That is what makes me mad at myself; there is one rule and I broke it.  It's been really weird because the hospital dr. felt that I was a reformed creature and would not be at an elevated risk.  My doctors, who know me so much better and know that I have always complied with the telling rule, they've taken it ultraseriously.  Both of them know that I have never gotten near this suicidal before and that I may have gotten help but totally outside of the promises I'd made in the past. So I also feel bad because I scared them and made me so they have to babysit for however long it takes to be safe.  Which may take awhile because as long as I slip over the edge into severe depression over and over again I need monitoring.

Mostly though, at this point, I am having trouble not looking at the much more normal calendar that existed in my head 2 years ago today, as opposed to now when most of my mental calendar is full of "get well".  I know that I am so fortunate to have income to support me while I go through this and that I can go through it when not everyone is as blessed.  However it still feels like "feel better" shouldn't be the hardest thing I have ever done.

And so begins blogging, the 7th year.

Saturday, January 14, 2012


Last night I was up crying until 3.  Then I had nightmares for many hours.  I'm completely exhausted.  No blogs today.  Maybe tomorrow.

Empty life

So I sort of forgot my stupid birthday.  Dr. Mind mentioned it and I thought I was fine.  And in a way I am.  But my issue with my birthday is that in the past a lot of hard things have happened on or the day before my birthday.  I have cried on my birthdays more than anyone should.  And this all cemented when I had a period of several (5?) years in a row that all had something substantially bad on those 2 days.

Tomorrow is the day before my birthday.  Sunday, obviousky is my birthday.  Please don't say happy birthday because I don't like it that much.  I couldn't care less about aging but every year old memories greet me.  Because Dr. Mind worked exceedingly hard at this for a few years, like as in we worked on it for two months each time before it came around.  This made it not so painful but far from my favorite day.  This year I assumed I could manage and that I did not really care very much.  We only talked of this for about 3 minutes before the end of the session.  I truly thought I was fine.

I didn't count on the current feeling that everything that can go wrong seems to and that I am looking at my birthday more as a good time for something else to go wrong and a time that I have to force myself to not reflect on the last year because 35 sucked.  It just did.  And 36, while I sincerely hope that it is an easier year is bound to have some seriously painful moments.  It already has.

And I can't explain this, (confidentiality promises are innate in the class I am taking), but looking around last night I did not see anyone who I thought was going to be my new best friend.  There was nothing anyone said that I really clicked with.  I actually wound up thinking "well, I don't belong, these people are too sick" or "desperate for help to the point they aren't listening to what we're asked to say" but me?  I was the one knitting because she's incapable of sitting still.  From what I picked up I'm probably the most recently released for a hospital and also possibly most likely to be fighting serious suicidal desires.  I don't know who I am or where I fit anymore and for so long I got used to being able to do so much that I shouldn't have.  A lot of my identity was wrapped in up the notion I was succeeding against the odds.  I knew that Drs. Brain and Mind had more to do with this than I did at times, but going from developing the home health agency's OT program (did you know I did that?  I did.  I was the first OT so how things work and the education that the staff have been given came from me) to starting to say this week when people asked me about work in a couple ways that I am not working and am on disability.  Starting to say that is probably a good start.  Both times though I was totally aware of my sad, sad voice.  One of the people teaching the class is someone I've professionally interacted with a number of times.  In fact I think she's peripherally mentioned on this blog in a professional capacity.  I talked to her about it and then said I was not working.  She said the same in just as sad voice.  It is so hard.  Without being an OT, without succeeding against odds, my identity is kind of unknown.  I've said numerous times to Dr. Mind and probably on here that the entire suicidal episode made me have no idea who I am because the real me wouldn't have done any of what I did and would in fact have been running to Dr. Mind for help.  But the loss of who I am is even more clear as I try to face that so many of the things that I thought made me who I am are gone.  I'm Aunt Jen, but I'm too sick to spend time with my niece.  I'm a Christian without much interaction with churches or the Bible aside from what Michal brings to me.  I'm still an OT but I'm also not an OT.  I remember asking a patient who was quite moody and I was trying to build rapport "So how long were you a nurse?"  She snapped at me that she still WAS a nurse.  At the time I kind of thought "whatever, you know exactly what I meant and you are retired now".  And now I totally understand not wanting to give up that part of who someone is.  The person I was a year ago would not need to be in that class.  That's the thing that I left with that was so obvious.  I was still bipolar a year ago and I still had a severe form of the illness.  But I was NOT severely ill.  Now I am and now I am very confused about who 36 year old me is as opposed to 34 year old me (35 psychiatrically was not bad but 34 was the year I thrived.  And I think I thought for a long time that 35 might have been tough but that I was getting my asthma under control and the surgery was going to fix the other problems I had and by the time I turned 36 the nasty year of bad health would be over and I would be back to being the real me, the one not so sick.   And instead I'll turn 36 in 24 hours and the rest of my life kind of stretches out in a frighteningly blank stretch.  I've never had a birthday that I can remember (I probably didn't have huge goals when I turned 1) that I had no idea at all what my life would be like in 12 more months.  I have had the wrong picture before, I've had things go much worse or much better than I would have guessed, but always there's been something on the horizon.  Now I know only that the goal is to get me to stabilize and that's my future, trying to get there.

This hurts enough I'm crying.  I've been terrified to cry, especially without Dr. Mind or Brain.  But I hate this.  It's scary and it sad.  It is so sad.  I fought so hard to work.  I am not saying it was always wise, it wasn't.  But a huge chunk of me has been lopped off and it's not overly likely that  I'll get that chunk back.  And an empty life is I think what I wanted so badly to avoid with the suicidal stuff if it is put in a nutshell.

Well, Dr. Mind wanted me to write......I guess I did.

Friday, January 13, 2012


I am so sad today.  I have no clue why.  It's been a harder week so maybe that's part of it.  Maybe it is the snow and freezing wind (which feels as bad as the coldest I've ever experienced, which was -20 and locked myself out of my house with wet, shoulder length thick hair back in grad school.  Did I mention that when I did this my car was running and I was locked out of it too?  I went out to let the car run while I dried my hair and brushed my teeth every day.  Since I lived in a city I always left one set of keys in the car while it ran and then when I was ready to go I brought out another set of keys.  That day when I went out I automatically locked the house door and didn't realize it until I'd already locked the keys in the car. It was so cold that day that I started it a little early so I wouldn't be late for clinicals, then while I was finding an awake neighbor to ask for help at 6:30 AM (I had to call AAA to unlock the car; there were housekeys on the same ring) and then since I was clearly going to be late I called in, only to discover the message I had missed while outside that the school was closed due to the dangerous temperatures.

I did go up to the post office.  No package.  Hopefully I'll make it in tomorrow.

I think that my mood is affected by anxiety.  However I only am allowed one anxiety pill per day and I keep putting off taking it until night because that's when the worst panic attacks are. I'm not even taking them nightly which I probably should when one is still available.  It's hard because the hospital pulled me off anxiety meds totally (first they tried changing klonopin to ativan which didn't work so they took them away).  While I understand why, that until I'm further out from my suicidal days having much of the medication I was most focused on and which is the only dangerous med that could be taken from me (conveniently the other truly dangerous one is lithium which I'm not about to overdose on--Dr. Mind is able to keep me from having these anyway.  He doesn't actually count what I'm doing or even really watch me anymore but it's pretty clear that I am to behave responsibly with meds in his office; I think not doing so would be an even greater violation of trust than anything else I've done lately.

Sometimes I think I'm sad on these days just because I know that I was incredibly stupid and broke so many promises that I've made many times over the years.  Yet the people who I promised are being kind to me instead of yelling at me and I think it would be easier if they were mad.  I can't believe the series of decisions I made that were dumb and everything I've been taught not to do without seeking help.  I feel so frustrated with how many backward steps I've taken even after I corrected the first mistake.  This whole last 5 days has been rough.  I did go to the post office and had a brief conversation there so I met the requirement of doing that today, yesterday, and Monday.  Tomorrow or Sunday I'll be going out with my mom for a while to celebrate my birthday so I'll hit 4 times which is the goal.  But I do not feel happy.  I guess nobody said I had to, but I'm just frustrated with myself.

Partly that is for the dumbest reason ever--I'm really disturbed by the inability to maintain eye contact.  Like disturbed enough that I need to talk to Dr. Mind about it and hopefully he'll tell me I've done this every time I've been really sick and I don't remember it.

It was a very, very hard won achievement for me to do that.  Hard enough that during therapy school we'd have personal goals with these mini-projects we did and that worked so well that they carried it over to most of our other classes.  A classmate suggested I work on that and it was really an achievement of my entire grad school class because everyone helped me with it.  We had one class that we would be given one of 2 theories of OT to learn every week.  In that week we were responsible for learning everything possible about it and then in the seminar we divided into 2 teams to debate and discuss the 2 theories paired for that week.  I absolutely loved the class.  It was the best of most academic talents that I had and because I used to have until I got sick a pretty much photographic memory it was a chance for me to excel because I would read the theory and every research article I could find and memorize all this so everyone would have these huge stacks of articles and I had a few note cards.  It was fun for that talent to actually have a purpose, and I really liked turning the information around in my head and finding good and bad things.  I remember the day that this girl who aggressively tried to be the highest score in every class, even one like this that was basically pass/fail up until one paper at the end that was pretty hard to fail since it was called "My theory of OT", but anyway, I remember one debate getting intense and everyone made a big deal because while we were debating back and forth I maintained eye contact the whole time.

 In 2007 vocational rehabilitation did an OT evaluation of me.  The end result of that was that I learned that my eye contact lessons had paid off as I made better eye contact than anyone else with severe bipolar the evaluator had ever seen.  With Dr. Mind it is also something that was hard won; I remember about 6 months into seeing him he stopped a conversation mid-sentence to ask if I knew I'd been looking him in the face for 10 minutes and what had changed?  I was so proud of that.  And while I've often not looked at him much when dealing with something hard it's been 6 years since I couldn't maintain eye contact at least some.

I am just not comfortable with who I am right now.  Which really isn't necessarily bad since getting comfortable with a very symptomatic me would not be helpful.  But it  is somehow symbolic of how wrong things are just now and I really hate it.  I also hate the reminder that I'm probably not doing this because I'm embarrassed.  And because of what it was it's not like we can just agree to move on and forget what happened.

Anyway, this is a weird post and I don't really have a good reason for feeling sad, I just do.


For the time being I would say it is unlikely I'll be posting on Thursdays.  That's a long day!  I see Dr. Mind at 1 and my class is from 6-8.  Dr. Mind suggested that I move his appt. to a later time but for now I want to see if I can do this.

Yesterday Dr. Mind and I talked a good bit about feeling safe.  I don't.  He was matter-of-fact.  I've been in this place before and we've fixed it, etc.  Fine, but it's never been the reason I'm scared now.  I left knowing the bottom line is that I do not trust myself.  In the past I have not trusted crying or anger or some emotion.  This time it is me that I don't trust.  So we're both right.  I did not leave feeling we'd fixed anything or that I'd provided an information he did not know.  Yesterday was grab needed meds day.  Since he has to give me the key to do that he has been getting an education on how many pills I take each day.  He's rather amazed.  The funny thing is that he's not even seeing nearly all of them because I have a few harmless meds at home.  I still can't make eye contact and hold it.  I hate that.  I also can't talk loud enough.  Dr. Mind has hearing loss and has to keep moving closer to me.  I sound very critical of myself there; these are just things I've worked so hard on and not being able to do them is frustrating.  There was one somewhat funny moment when he said something about my birthday being soon, how was I feeling about that.  I answered something and he thought a minute and told me I am the only person he treats whose birthday he knows.  So I'm special (actually I have birthday trauma that we worked very hard on for 2-3 years which is where that started.  Plus my birthday is pretty easy to remember as it is Martin Luther King day (the actual date, not the day off work for some places) and it is also 3 weeks after Christmas exactly.  So there are more tricks to remembering than many birthdays.  It still is funny.  Especially since I think he said that because I was surprised he remembered since this year I really don't care.

The class...not sure what to say.  It sounds like some of the content is going to be very helpful and some I will know.  It sounded like 50-50 or so.  Yesterday was much more impressions of people and I can't say anything about that.  I wound up needing to knit through a lot of it to keep my fingers busy and me in my seat.  They were fine with that; I explained briefly that I'm off anxiety meds and am not sitting still just yet.  Dr. Mind is going to have an interesting take on one thing; they go out to a nearby coffee place after class after the first week.  While I know going would be good for me I really don't want to not get home until 10 as it keeps me awake.  Also coffee places frustrate me because I don't/can't drink coffee and the price for a cup of tea at this place is ridiculous.  So hopefully he won't make me do that part.  If it were summer it would be one thing but it is decidedly not summer (we have our first real, albeit late, snow fall, along with wind that is making it quite chilly today.  I hate to turn up the thermostat because I was freezing when I woke up.  I made it to just outside my town before it started, so that part was good).

I still haven't heard anything from work about my inability to return for many months.  I was not very specific, just that once I stabilize it will still be many months before I can return.  I did not say it may take 6 months or more to stabilize, then 6-12 months to meet the requirements.  I said it how Dr. Brain told me too, in a way that should have let them know things are seriously wrong but without being at all specific about that.

I need to go to the post office.  I am anxiously awaiting a package.  And I just reminded myself it will be closed Monday and tomorrow I don't know if I'll make it out.  I hope I'll finally get it together to get my blood drawn.  I keep trying and failing because of not sleeping well, forgetting what time I took the meds when I shifted the lithium to later to make the blood draw easier, etc.  I was disappointed last night because at first it seemed I would fall asleep earlier than I've been doing lately (the insomnia is acting up although once I get to sleep I do get 8-9 hours) and then suddenly I was wide awake again.  And that kept me up so late that there was no way I was going to get up in time for the stupid blood draw.  It will happen.  It may give Dr. Mind a stroke first, but he does understand my problem.  One advantage to the weird way the hospital dr. did it was that the levels were drawn at 4 pm. The problem is that this number is meaningless in the context of years of 12 hour draws which make up our knowledge of how I usually respond.

Anyway, must go to the post office.  At this rate they'll be closed when I get there.  I really don't want to go out in the snow and wind.  Waahhh!:)

Wednesday, January 11, 2012

Hard work

I have a memory foam mattress.  The one I have has a cover and kind of a pillowtop that make it look like a regular mattress (and decreases the extra heat from the foam as well as providing more support.  It was starting to be less comfortable and so I contacted the company and they said that it could be flipped and then the pillow top zipped onto the other side of the mattress and that this would make it more firm).  (The problem comes from sleeping alone; when the mattress is only turned and not flipped this means that some parts never get used and the parts that did get used were getting uncomfortable).  It took me 2 hours, including rest breaks.  Turns out that after removing all sheets, blankets, both mattress covers (one for allergies, one water proof) and then unzipping the pillowtop part that they didn't mention the part where the mattress is encased in what looks like the outside of a mattress and that flipping it means you have to put that part back on and that this is not easy.  The mattress is quite heavy and I thought that would be the hardest part but it wasn't, it was lining things up.  I also thought zipping the pillowtop on would be tricky and that was possibly the easiest part.  The hardest part by far was getting the mattress aligned in the casing.  Lots of lifting, pulling, balancing things on my head (only did that once since I nearly was knocked over).  I think it feels better but it's hard to tell for sure yet.  It did look like the bottom doesn't have the same few inches of higher density foam that the top does but I think those were something I got that was optional.  I also have to get a new allergen cover at minimum as neither cover will zip anymore.

I also was shocked to discover how much damage a single straight pin that had gotten into the mattress cover somehow (weird since there has always been 1-2 mattress covers on this mattress).

I sincerely hope this tired me sufficiently to give me a break from insomnia.  Right now it seems it may.  I hope.......

In reply

Michal asked another good question more than 1 person may wonder about.  So here's the question and answer:
Why do you say you'll never be free from precautions? You suspect that you're the "sickest" patient at this time but you seem to be stabilizing at an amazing rate. I'm not into "speed" or trying to deny serious concerns but I see growth already. 
I was exaggerating.  But it's important to also know this is a 2 steps forward, 1, 2, or 3 steps back thing.  I took a big step backwards yesterday with the (fully expected) return of the non-dangerous but still shouldn't have them thoughts of not wanting to live.  Since I have to prove that I'm stable and safe and can maintain that it just is going to be a long time before I have everything back.  Which is fine.  What happens is that between brain chemistry and illness and stress every so often my brain takes a big step backwards into wanting to shut down or die territory.  It's how getting over this works, but the last few days have been harder.  Some, a lot, of that is that talking to Dr. Mind is going to be tough tomorrow and my brain chemistry has gotten used to the answer to I'm upset being I want to die.  I have a feeling that they'll make me handle a major stressor before they feel I'm truly safe.  Because I've dealt with so much for so long without becoming the way I've been the last while it will take even more time to show I'm fairly stable again and that my brain has found a new default.
 don't you think it's possible that one day you could work part-time? It's probably way too soon to think about that but on the other hand, you might need that hope.
Working part-time and my disability insurance don't mesh.  So unless I get so well that everyone feels that I am unlikely to need disability again for many years if ever and that I'm well enough to work full-time (for income as well as benefits) I can't go back.  On SSDI you can work a little bit but I have private disability insurance that doesn't allow that.  Even if I do go back to work it is unlikely that I will try OT again.  I don't think there are any jobs that are not stressful (part of the problem with working is that we have to know I can handle stress without going backwards) but because of the shortage of OTs in this state it is pretty difficult to not wind up overdoing it.  If I were to say I can work 8 hours/week it would nearly certainly turn into more than that and I would be totally stressed about sticking to less than disability would allow because the patient needs are always so enormous.

Right now I am actually feeling better focusing on NOT going back.  I still may although the requirement to do so is pretty hefty, but right now I can't think about taking on more than this minimal life. The last few days I've not managed to leave home or go outside.  I'm tired.  I have done some cleaning/organizing and in a minute I'm going to remove sheets, blankets, allergen cover, waterproof cover and mattress top from my mattress, flip it, put all those things back on (it's memory foam and hopefully have a more comfortable bed.  But I haven't managed to push myself to even get mail because I haven't been sleeping and even that 1 part of the system is able to mess up the rest of it.  There are so many pieces to work that I find the idea overwhelming.  That's hard to admit, but at this moment that's the feeling.  I also know that if the people treating me think this is likely it truly is because they've never given up on my ability to work before and now nobody is sure where this is heading aside from not a great place.

Don't worry, I'm not upset.  I needed to think about that to clarify my current position.  I actually am probably making myself shoot lower than I hope for just to decrease the risk of being hurt if things don't work out.  It's been so long since I felt ok that it's hard to believe that will ever come again.  It's not impossible but the cost to me may remain too high.  Or not.  Mostly the plan to to prevent suicidal thinking and go from there.

More quotes

A young woman who I babysat years ago when she was a toddler (now in college) posted this on facebook today.  I am trying to remember it when I feel sad about my working situation.

“To know even one life has breathed easier because you have lived - that is to have succeeded” -R. W. Emerson
I have done that.   I may be stopping earlier than I hoped but since I have to stop thinking of that as failing I think I will try to focus on this.

I also have another quote from me, written just about a year ago:

In fact he {Dr. Mind} told me the other day that I'm no longer his most acutely ill pt.  I think this is supposed to be a good thing and all I can think is after 5 years???
I have a funny feeling I'm the sickest again and I bet not only have I reclaimed my title months ago I'd also bet that I will be holding on to it for a long time.  I was grumbling about hating not having access to my meds and said that I did realize that the fact I was feeling annoyed by our arrangement was a sign I was improving.  I also thanked him because it feels awkward to fill pills with him but it is WAY better than if my mother were involved.  He really is annoyed at her, I can tell this because that was what he wanted initially and I begged him to just keep the keys for me so I didn't have to involve her.  Now he even commented that she'd be likely to be obnoxious about it and lecture me.  Glad he came around to this.  But I still apparently am far from being trusted since my grumbling led to "No sympathy" said cheerfully.  I am never going to get free of these precautions. My own fault and truthfully I'm glad to have them but it is not fun to have to remember that I need to get meds out and to do that with an audience.

Oh well.

Monday, January 09, 2012

I am titleless

Sometimes I think titles are the hardest part of blogging......

I am...something...tonight.  I saw Dr. Mind.  We laughed at my medication traveling kit (he has the key to a locked box that any unsafe med lives in.  I am carrying this back and forth as needed with add or retrieve pills.  It is annoying but he says he doesn't care if I'm annoyed.  So we continue, noting my feeling comfortable enough to not be annoyed is positive.

Today was the first day he really has pushed at me much since I got home.  I know that it is good that he feels it's ok to not be extremely gentle but I did not realize until after I left that I am terrified of feeling much of anything.  Because handwriting things was very helpful in the hospital he's been trying to get me to do more of it.  I told him today that I am afraid of that because it brought so much out that doesn't yet feel safe.  So we talked a little about how so much that has happened in the last year feels like a sad ending and we talked about my prediction in 2006 plus the story about being told that 2 years was impressively long to work with my severity/type of bipolar.  So 11 years is more than I should have had, statistically.  And for the first time we talked for a bit about my regrets about some things.  We talked for a minute about my fear of being hospitalized again.  And we went through a few hard, pointed questions, about suicidal thoughts (every time we do this, I am getting more used to it).  This time he pulled out the other question I'm going to grow to HATE:  What am I not telling him?  I truly can't think of anything and he seems ok with that.  But the effect was to make me feel when I let and realized I had be very wrong about something that I might have lied, something I am very aware of right now after the lying that I did.  But what I did was just say what I thought and then realized I was wrong later, which I am allowed to do.  When I told him why I don't want to let myself get upset I initially said that it wasn't that I was scared if I felt sad or upset that I would return to the scary place I was in 3 weeks ago.  But that is exactly it.  I am afraid to face the sadness about the changes in my life because I am afraid of what happens if I do.  This means, of course, that I need to do that with him and that I very much need to feel those things, but I am terrified what could happen.  The last time I took a hard look into what I can and can't do was pretty unpleasant.  I'm terrified to look harder or to try to figure out how I really feel alone, and doing it with him is hard too.  We tried today.  When I cried he moved on shortly after.  Next time I'll tell him I was wrong and I do not feel safe looking at things that hurt.  I need seriously huge amounts of handholding right now.  I know that it is normal enough to be afraid after what I just came through,.  It just is really hard to test my coping skills right now.  I have had some bad times when I needed a lot of help to cope but it's never been quite like this.

I truly hate feeling so fragile.  I see a pale, sad face when I look in the mirror still.  I look like I have been through a lot.  I have been.  I just haven't yet figured out how to process and start living with everything.  I don't know how to trust myself anymore.  I really scared myself because I was one impulsive moment from something really bad happening, as well as one moment of deciding that was it not impulsively.  I keep thinking of what Dr. Mind told me when I had just gotten out of the hospital, that if I choose to hurt myself there is nothing he can do.  He can make it harder but he can't prevent it.  Which just makes me more afraid because it is true and so I do not want to risk feeling like that.  I think I've got a better means to handle it even if being sad is as risky as it feels.  I know that I have made decisions about living versus dying and that it is different now because I have help with that because I got around to asking for it.  Nonetheless, feeling sad or crying or feeling any of the other hard things that go with my new understanding of my situation terrify me.

So we'll be taking a huge step backwards apparently and relearning that being sad doesn't mean being suicidal and that I do have a safe way to manage these things, I just need to use it.

And actually I think the step backwards is already happening.  I am not able to maintain eye contact.  I can't with either doctor.  I haven't shut off feelings for years because I've trusted Dr. Mind to help me handle what felt awkward.  It's been only a few weeks since I went into complete shut-down mode.  It does not help that  it feels like that was a lot longer than a few weeks ago.

Anyway, it is hard.  I am now exhausted because of how hard it was.  And the next one will be hard too because we have to talk about this.

Sunday, January 08, 2012

Looking back

When I included that little story about Dr. Mind the other day I had totally forgotten that when I first blogged I kept it so removed from my life.  I had been blogging nearly 9 months when I said I was some kind of therapist.  I also didn't talk about what happened with my doctors, especially not in therapy because I was scared someone would stumble into that.  At the point that was written I hadn't even created nicknames.  I was trying to see when I did create nicknames when I found a posting marking 4 years of official diagnosis.  I am very aware that this year I will be at 10 years since diagnosis.  What I had forgotten was one of the ways to know how amazing my years of working were for me to have achieved that.  For someone who has never heard this story after realizing that I was more than likely bipolar and having this confirmed by a therapist who'd never actually treated someone with severe bipolar I wound up discovering that Case Western Reserve University has a mood disorder clinic that was headed by a man considered to be a world expert in bipolar (Dr. Calabrese).  Because of the severity of my symptoms they jumped me over the waiting list (they wanted to hospitalize me to start but back then Ohio did not have a mental health parity law and I had no insurance coverage for psychiatric hospitalizations and a $4000 deductible before they'd pay for any mental health treatment).  You had to have someone who could verify your symptoms so my so-called best friend (who in just a few months would be the so-called-friend-who-decided-bipolar-made-me-not-a-Christian) came with me.  Thankfully they had her sit kind of behind me and verify mainly with nods so I really never knew what she told them.  Hindsight says probably not the best choice of "friends" but it worked.

Anyway during these next months there is something I had forgotten that helps a little (at least right now it does).  That little thing is that I made it much further than I should have.  I had forgotten because I took working for granted and it is wonderful that I could do this.  So the Sept. 2006 story of Sept. 9, 2002.
The evaluation itself was exhausting. That's mainly what I remember, how tired my brain was at the end. He asked questions about everything in my entire life and how I did things, reacted to things, approached projects, etc. He walked back through my life year by year to find when I truly first had symptoms. He started predicting the patterns that identified the variations of bipolar that I had. That amazed me; he could ask "do you do this?" and then tell me that I also did this and this but not this.

At the end he did something that I have remembered a million times when I have been most frustrated. He asked me how I had done so well for so long. I had gone far beyond when I statistically should have been clearly diagnosable, and I had avoided pitfalls I was statistically extremely likely to land in. At that point it was amazing I had maintained a job for 2 years. What he didn't know was that I hadn't even missed a day of work due to bipolar symptoms yet and I wouldn't for another 5 months. That made me feel so good, like at least if I had to have this at least I wasn't totally handling it horribly.
Even with that comment in 2002 it wasn't until 2004 that I was on disability and that was simply 6 weeks for treatment of akasthesia and vision problems as a side effect of Abilify.  I made it to 2006 until my first real disability and even then worked 5 years after I went back.  It seems less horrible in these terms.  I did what I shouldn't have been able to.  The current changes stink but they could have come a lot sooner.

This is very weird.  Also in  Sept. 2006 I wrote:
 I seriously doubt that I'm going to be able to do this for a tremendously long time. I'm arbitrarily picking 5 years as a point that I hope I still will be working. 

And Aug. 6, 2011 seems to have been my last day (at a minimum for a very long time).  Self-fulling prophecy that I did not remember?  One very good guess?  Again I totally had forgotten that and in the last few years had come to believe that I could have a normal career.  Compared to how hard working used to be this was reasonable.  But bipolar is ugly and I forgot that just because I well for a long time that did not mean the future would stay that way.  All we could could do is hope and I suppose I took that further than was best for me.

This has been interesting.  I had actually forgotten that I felt a significant decline in 2006 and that I struggled for over a year to adjust to a decline in my functional skills along with having very few med choices left.  Sound familiar? I wrote this in 2007:
 This week is when I'm going to start my new psychological adventure. It is time, I believe, to begin to determine how to not put myself in the same position I did this last time. I made myself miserable for a long time by insisting on believing that "better" meant back to the way I was, the way I knew myself. Instead, when I finally gave up and accepted that I lost ground that was permanent, I was feeling better (in new ways) in a matter of weeks
I could have written that today.   The difference is what I was losing.  However, even some of the same issues I was dealing with then are still in place, mostly that there are 2 meds left that I haven't tried and am not allergic by default or are contraindicated with something else I take:  Zyprexa and Clozaril.

Here's another one from 2007.
I saw my therapist tonight. He was pretty happy with how I'm doing. I've actually come to an acceptance of my current limitations over the past few weeks, and that really is working. He told me this is one of the days he got a glimpse of what I would probably be like without this disease. That, of course, is very good. It turns out that not fighting how I feel is maybe even letting me feel better, because it wastes less energy. It also is encouraging me to take it slowly, which is simply not my usual style. I'm trying so hard to follow my body's lead this time, and it is just possible that if I had done this sooner like everyone encouraged I might have suffered a bit less
Somehow I don't think that conversation would happen again.  I think he got to know me without symptoms.  And now that is gone.  I was adjusting to my illness progressing at the time this was written but there was no way to know that 2 years from them I'd actually start feeling normal much of the time for nearly 2 years.  This time though I know that it was obvious to everyone else before it was to me that I needed to be off work indefinitely and my reaction to that was terrible as I tried to adjust to it and I have fought kicking and screaming against what was happening for months until I finally gave it and decided to try to live this way even though it's hard to consider.I think that now that the time I was being prepared for a few years ago happened for real everyone had started to think it was not going to happen and that I'd keep avoiding the end of who and what I wanted to be.  I am glad that I have been back through this though because it helps to know that this did not just happen, that it was a very long process and I now have a reminder that while I'm sad about the ending I made it nearly 11 years which is amazing.

I need to change my sheets.  I really hope I'm right and there's a clean set in the closet because I really don't want to have to do laundry tonight.  Tonight's wild plans include clean sheets, a shower, feeding my worms, a bit more watching a movie, gathering laundry to wash tomorrow and bed.  And this post is way too long.  So good night.