2013: The year I stopped wanting to die

That is my summary of 2013.  Six months of desperately wanting to die, 6 months of not wanting to die, while not necessarily wanting to live.  I am more at peace now with where and who I am and that is progress.  Progress is a good thing after 18 months of wanting nothing but to die.

Because maybe in a year I won't remember this, right now progress means that I am starting to tell people when I don't like how they are treating me.  I am actually doing fairly well doing this with Dr. Mind, although it has a week's delay because I have to think about it before I know if I'm right.  But I have done it a few times in recent months and since he's very confrontational of late I am getting lots of practice.  I've also done a little better with my family although that is much more difficult.  I also am starting to look at Dr. Mind more when talking to him.  We've progressed from trying to know what shirt he was wearing each visit (and not just his shoes) to eye contact a number of times in the 12/30/13 session.  Those things are big.  Recognizing that is big.

I can't end this without saying that there are lessons to be learned from Geraldine's illness and surgery but I don't know what all of those are yet.  I do know that a baby who has been through so much more than a baby should have to go through is the single happiest, most smiley baby I have ever known.  And not only does she smile at virtually everything, her smiles crinkle her whole face and light up a room.  She recognizes me now and to get a grin just for being in the room is incredible.  At the same time her sister is growing into a wonderfully loving and caring child who is always ready to help or to look out for someone else.  I am so proud to know her because at 3 years old she has already grasped what caring for other people is and why it is important.  I am sure that some of that is from the difficulties with her sister's health and that period of time that had to be so confusing to a little girl who had been promised a sister.  All the things related to infancy that she needed to know had been explained and discussed.  We left out what happens when your sister has a very, very rare tumor and has to have testing and surgery soon after birth.

In this next year I hope that my life is going to become routine.  It's been so long since that was true.  But soon I'll be living in my new home and at least until summer things should be fairly stable.  If Dr. Mind doesn't leave it's a year of no big changes that I can anticipate.  I'll probably have my ankle reconstruction surgery but not for a while.  Otherwise I think I will have a few months of stability and waiting for a new anti-psychotic that is possibly going to be released this year and is hopeful for me because it isn't related to any of the others.

For everyone, including myself, I wish with all my heart, peace.

Misconception

I was reading a book (You Saved Me Too: What a Holocaust Survivor Taught Me about Living, Dying, Fighting, Loving, and Swearing in Yiddish by Susan Kushner Resnick, 2013, pg. 85) this evening that had the following passage:

I firmly believe mental illness is a disease of the brain, just like asthma is a disease of the lungs.  No one brings it on himself.

That part is fair and good.  No problems here.

Low-level depression is like a bad cold-sometimes you need medicine, sometimes you just need time.  What I had, post-partum depression-is like pneumonia: acute, but curable with  the right course of drugs.

Here there is a problem.  What about all the people with moderate to severe depression that isn't post-partum? They too need treatment in many to most cases.  And post-partum depression can be mild and not require treatment.  Even if the analogy is simply that depression is like a cold and ranges from needing time to needing treatment that still can overly medicalize it since some people benefit the most from psychotherapy and few colds improve from talking about it.  However, that's not my real problem.

My real problem is this:

Bipolar disorder is more like asthma-chronic, but usually controllable if you take the medicine-and schizophrenia is like lung cancer.  Catch it early and it might not ruin your life.

And while this is a book about a woman's relationship with a Holocaust survivor, not a treatise on mental illness, this is presented so factually that it needs to be addressed.  There is not a mood disorder spectrum.  There is not a mental illness spectrum.  One person's depression can be much more debilitating that someone else's bipolar disorder.  Some people with schizophrenia respond well to treatment and after an initial diagnosis function well on meds for many years without issues (I'm sure they have drug issues, but they succeed despite their diagnosis).  I have faithfully taken every medication handed to me and ultimately my bipolar disorder made me really, really ill although I was able to fight with all my strength and do ok for a number of years.  I even did well a little of the time.  But the spectrum thing is too simplistic and too big on the "she's sicker than you because she has post-partum depression and you "just" have depression while I'm sicker than both of you with bipolar but not as sick as him because he has schizophrenia."  That thinking is not good. So if you read it please undo it in your head.

To the world (is that too broad?)

First and as a side note, I've been away for a while.  I've been much more symptomatic lately and just haven't felt like talking to much of anyone.  It got very complicated for a bit as Dr. Mind trying to prove a point caused a lot of stress and then there were 2 days of Christmas celebrations preceded by a lot of sewing, cleaning and the normal stuff and although I still don't have water or septic we had my things moved into my home last week so that we can start moving things in and assembling Ikea furniture while we wait. So a lot is going on and I'm barely feeling up to handling it.  When I'm on my own and have these times when I'm really depressed I nap more.  Living here that isn't as possible so instead I'm exhausted all the time.  I haven't been using my SAD lamp this year which is also not helping.  First it was triggering migraines and then when it seemed ok to try again my mood was so weird that Dr. Brain wanted me to wait a month because she isn't sure what med to adjust and hoped time would make it clear.

But the real point here........

Fast and to the point and based on a family experience today:  Unless you are taking heavy duty (ie significant dose anti-psychotics) you are not allowed to make jokes about "your meds" after seeing me reference mine in a serious context.  If I know you don't even take an anti-depressant you will be fortunate that I do not unleash years of pent-up frustration that you do this at you publicly.  It just isn't funny when you are referencing drugs that slow me down, make me tired all the time, make me fat and losing weight is so hard between meds and illness and worst of all they restrict what I can do.  They are not funny.  You are not funny.

The end.

A long time

Two years ago today I signed the green voluntary commitment papers that admitted me to the psychiatric unit.  I knew I was dangerously suicidal and tried to communicate that fact but it took another day and a half before I got the point across to the nurses and doctors.  That stay was long and very, very difficult.  I had painful conversations with seemingly everyone but especially Drs. Brain and Mind who gently explained about the precautions I would need indefinitely. Two years later some are still in place, most notably that I have limited access to medications.  Every week for 2 years I have brought my meds in a padlocked box to Dr. Mind's office.  He gives me the key.  If he is worried he watches me.  Most of the time he doesn't really.  Nobody will say when this will end.

That hospitalization was emotionally the hardest of all of them because it was when I started verbalizing my terrible awareness that I was not going to be able to work anymore.  Saying that the first 10 times felt like ripping my own heart out.  Then it got a little easier and although I still couldn't say it without crying for months after I left I was saying it and preparing for it.  I remember being in a group the day after Christmas and 3 days after I had first said the words.  We were asked to talk about something that we had damaged in our lives because of our illnesses.  I said simply that by letting things get out of control I had ended my career.  At that moment little was said about that but at the end of the group the leader made a point of saying that he knew what my career was and that he was sorry.  By that point all the staff were being briefed that I was dealing with that when they checked in before the groups so he knew that I was not saying much about it except to Dr. Brain and that saying it in group was big.  (The first group I said it in was just 2 people, me and someone else). 

Several days after I could say it without sobbing for several hours I went home.  The journey was really rough for a long time and I can't count how many times I nearly went back to the hospital, especially in the first few months.

But the surprising part is that through a lot of effort on the part of both doctors and myself I haven't been back.  That last admission was not one that had a lot of hope that I wouldn't be back in a month or two.  I got really close but we worked around it and I am now hospitalization free.

What is even better than that is that I am re-learning confidence.  I have a pretty significant depression right now and it was complicated by a bad (stimulated) response to CoQ10.  It really has not been an easy few weeks at all.  But I'm able to use all the things that have kept me out of the hospital for 2 years and I'm handling it ok although more sleep would be really nice.  I still wish I could function like I used to but that is now so long ago that it is easier than when I was thinking "only 6 months ago I could..........".  Oddly it helps that Anne has never known me otherwise that she remembers because seeing this as normal Aunt Jen in her eyes makes it easier to think it really is normal for me.  She doesn't see symptoms, she just sees the person she has always known and who she knows sometimes has trouble with things.

Two years.  So long.

Liar LIar

So I saw Dr. Mind.  I told him that I had remembered.  I then downplayed totally how much it has affected me.  I either did it well or he didn't care to push because he seemed to accept it.  I didn't even tell him the story.  I should have but the truth is that I need to get through Christmas and then I can deal with this.  I am doing pretty well with the holidays and I just can't handle this now.  Next week I'll tell him that but this week I just lied.  For some reason I really wanted him to think I was doing really well today (so I didn't have to talk about that).  But I'm not ready to cope with it so probably am not doing the best job with it.

I'm trying to do sewing for my nieces' Christmas presents.  It's frustrating because of lack of space.  I made some yesterday so I could at least function but things aren't going smoothly and that's partly the space issue.  Oh well.  Someday I'll have more space again.

Tonight I'm really upset because my 18.5 year old cat seems to be losing control of her bowels.  There have been a few times that I've seen small amounts of poop outside the litter box that I thought was related to constipation.  Then this week she's been sick and there were diarrhea incidents that aren't under her control at all.  Tonight though she apparently just pooped over the edge of her bed.  I couldn't figure out the odor and was going to go cover over some atrocity in the litter pan when I noticed where the smell was coming from.  It looks like there are a number of potential causes and that we're going to the vet.  Just what I hoped for.

Otherwise I had a screening through charity care today and I may be eligible for Medicaid.  I already am on spenddown Medicaid, meaning that if in a given month I spend a specific amount out of pocket (the amount being so high that I couldn't meet it because I'd starve) they'll pick up anything beyond that.  But the screen today says I might qualify for medicaid that would be a secondary insurance to medicare.  I don't see how but I'll apparently be applying and I'm certainly praying as this would resolve a big issue with Medicare called "I don't know how I'll handle the co-pays for my meds".  Even with getting Seroquel and Nexium free I still have a huge out-of-pocket portion coming and it is nerve-wracking.

As of today I'm officially done Christmas shopping.  I have some things that are ordered that aren't here but I don't have to go in another store (except to buy oil for my car tomorrow) and I have sewing to complete (bibs for the baby, one applique to a onesie, and a cape for Anne).  I spent more than I should have but I'm pretty happy with what I got and the deals I found.

The house still isn't done and no word on when it will be so I'm very glad that I did not buy a Christmas tree.  I'm going to move stuff over and start setting things in corners just to get them out of my way here, as soon as it's less icy.  Our driveway is currently dangerous.  We're hoping to get a good estimate on having movers load things into a truck an then pile it in the house.  We just don't want to have to load and unload the truck if we can avoid it and that way we don't have to ask my brother or BIL to come move the freezer and washer/dryer.  I am expecting to be here for Christmas.  7 months......

avoidance

I've been avoiding writing.  Emails, blogs, I just haven't wanted to talk about this.  And I'm really still not going to say much.  I might have said more but then I was trying to work on the Christmas sewing I desperately need to do and I ran the needle through the outer few layers of skin while the machine was going and that was as unpleasant as it sounds and I still completely ruined the bib I was making.  So instead of feeling all proud because I got some things done and managed to do so despite how hard it is for me to knit or sew while crammed into this room (overcrowding is making me slightly stir crazy.  I'm going to start putting some of my things in the corners over there because I need space) I instead am frustrated.

But even that isn't the real reason I've become quiet.  Several years ago I wrote some about how a discussion of some of my extreme fears that stem from the abuse I lived through led to a discussion of my profound fear of guns and that it was pretty clear that something had scared me about a gun at some point in time but I did not remember.  I was eventually convinced that I did not need to remember and that remembering would probably only hurt me.  Even through the PTSD treatment where I had to remember a lot I did not remember what happened.

And then last week was deer season.  Although you could hear occasional shots in the town I used to live in I haven't lived in the country in 20 years and really had forgotten what deer season is like surrounded by, well, deer.  And here it is even more so because we live on the edge of a wildlife sanctuary and the deer get mixed up and leave it and then are practically lined up for the hunters.  Deer hunting is a necessity here and I fully believe in it.  I just had forgotten how much of it there is when you aren't in a town and some especially close shots had startled me.  (Ok, I probably got a deer killed.  The dog went wild and I let him out into the fenced yard in time to see a deer run off.  Immediately after there was a shot very close to the edge of our property.  My mom said there were ATV tracks back there so someone nearly certainly hit a deer within minutes of my accidentally flushing one).

I was driving along thinking about this and something flashed through my head and I was really afraid and I even said aloud "I'm remembering.  Please God I don't want to remember".  But I did.  And while I am not even particularly freaked out (probably because it was likely to be some variation on one of just a few things so I did know what it was likely to resemble), I am avoiding thinking about it or what it meant.  I will say that it was an obvious scenario but the people involved are not who I would have thought.  It does, however, take one memory that has always been something that I remembered a certain amount of and then no more of what happened and it gives it an ending and a reason that I forgot and a reason for my fear. 

Anyway, tomorrow I see Dr. Mind and we can talk about this.  I don't know what there really is to say; it happened and life goes on at this point.  But it was strange to remember like that.  And I don't want to talk about it, indicating I need to.

Big thoughts

One day recently it suddenly occurred to me that part of what I'm fighting with still regarding having to stop working and how limited my life is in many ways is that I wonder if I had stopped sooner if I would have not lost quite as much.  From very early on in my career there were warnings that I was not in a specialty that worked extremely well for me (but in other ways (flex time) it let me survive).  I knew that I was struggling to survive working but I didn't know what else to do.  I kept thinking that if I was to change career paths that an obvious path would become apparent.  There was once a chance to do something with wheelchairs that I would have taken but it fell through because Medicaid didn't approve of the innovation of the position I would have had.  There were hints about wheelchair jobs another few times but never clear ones.  And so I kept going until I no longer could.

I asked Dr. Mind if I would have wound up where I am now if I had stopped sooner.  He thought a bit and said that emotionally I hadn't been ready to stop sooner and that I would have had a harder time getting approved for disability before the drastically sick time when I was.  He also told me that he had become concerned about my ability to keep working over the course of the last year that I did it.  He said he wasn't ready to say anything but was afraid he would need to because he was concerned that I could become so tired I wasn't safe for my patients.

At first I was really surprised about this.  The last 2 years I worked were my best career years.  But he's right.  The last year things were showing signs of falling apart.  I was not getting enough sleep and was spending a lot of my free time doing notes because I wasn't able to do complete notes while doing therapy and the notes had to be quite detailed so I needed at least an hour and often considerably more depending how many evals I had done to work at home.  Then I had a long commute and drove all day so that cut into my free time as well.  Physically I was so sick for a lot of that last year because my lungs could not heal from pertussis while assaulted by being in homes with smoke, mold, general filth, and an area with excessive air pollution.  While I still am on an oral med for asthma and am never without an inhaler I no longer have asthma attacks every day or even every month.  I no longer am triggered by a whiff of a chemical as long as I'm careful what chemicals I'm around.  On top of that when I am honest I can say that April 1, 2011 was a dividing line.  Medicare began a new rule that required much more extensive evaluation visits be done with patients repeatedly throughout treatment but in the first few weeks they were done 3 or 4 times.  Each one was more paperwork and less free time.  I felt myself being unable to adjust to  this and unable to feel that I was keeping up.  It was so much more stress because I just couldn't manage to do the same job I'd been doing for a year and I was too proud to admit that.  Plus I was waiting for an assistant to be hired and was training another therapist to help me as needed so I think that I was telling myself I'd be fine as soon as those things happened.  But the truth is that I wouldn't have been fine.  I had reached the line of "too much" and no matter how much I hated that it was the way it was.

Obviously God knew the story before it played out and as it was I think that leaving because surgery had screwed up my cognition was a lot easier for me to face than leaving because my bipolar was spontaneously progressing.  It never will be easy that I went into surgery one way and came out another because in a way I signed the things that happened into being.  But I'm ready to admit now that I was already experiencing changes, just not as drastic as what the combination of Reglan and the Mirena IUD caused.  I suspect that another year and I would have had a very difficult situation develop anyway, if it took that long.

The other reality is that while the things that happened to my brain have been challenging to handle (and I am aware that I have improved with that, I am just leaving it as things changed because they did and some did not improve and some got worse and it's too hard to define well) the sequence of events was the best thing that could have happened in terms of getting me on disability.  I can't say that any of that time was good, it was scary and awful and so sad, but I was saved from waiting years for disability.  I'm sure that my Christmas 2011 hospitalization alone contained the word suicidal enough times to show that it was a huge problem and many other forms went in saying that my psychiatric and cognitive statuses were severely impaired.  That also helped me get my students loans forgiven and we'll just say that if they weren't I have no idea how I would have paid a massive amount of my income to them because even bankruptcy doesn't discharge student loans. 

I don't know.  It's just a lot to think about.  I guess I'm finally ready to see it but it still is sad to think about.