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.

Thankful

Last year Thanksgiving was wonderful and very special.  We were on the Outer Banks and we love it there.  Anne was at a very funny age.  Everything was great but it wasn't a standard Thanksgiving.  The year before that Dr. Mind and I agreed there was no way I was participating because I had just gotten out of the hospital with lithium toxicity and still felt like crap plus had no slept in several days between hallucination and the hospital messing up my psych meds, so I skipped it.  The year before that I had whooping cough and wasn't allowed near Anne (and other people weren't really going to want to be with me; I was still pretty sick).  The year before that was just my mom and I and we ditched all tradition and had a delicious roast recipe that I have never cooked again because the next day I felt funny at work and then we kept sending really sick patients to the ER and my co-wokers teased me that it was making me nervous.  Until I said it started that morning.  Then they stayed far away.  I was so sick I was in the ER twice for fluids and rule out appendicitis and then had to see Dr. Mind twice more in the next week.  So it's been a long time since Thanksgiving was normalish.  This year it was my brother, mom and I and that's pretty normal.  My sister's family alternates grandparents so next year will be more lively but it was nice with just the 3.  Not too loud, just the right amount of food, etc.

Friday my mom and sister went shopping for a while and then Anne came up.  We've just hung out mostly.  We went to a crafts show today and later made a craft I've been waiting to do with her for a few months.  She's got a cold and gets tired pretty easily right now so lots of reading and playing on the ipad happened.  She played with most of her toys at some point, she just wanted a lot more quiet time.

My mouth seems to be healing well except that anything cold is extremely painful for 5-10 minutes.  He told me that the way this tooth died isn't the typical pattern and that it gets really irritated throughout the tooth (not just the root canals) and the surrounding gum tissue as well.  I think that the ligaments between the teeth also were irritated when we started and drilling through porcelain and metal in my crown had to have vibrated that pretty well; the drilling was pretty ugly sounding.  So I think that's what hurts since the tooth can't hurt anymore but I hope it stops soon.  I'm cheating again and using ibuproferon cautiously until I see some sign of lithium issues (I always get sick so I'll know) because I think rather than just suffering through it and not drinking enough, drinking only warmed drinks, or taking vicodin when I only have pain a small part of the day, are not as likely to help as reducing the inflammation.  I'll call the dentist next week if I have to but I want to try to control it first.

I forget what else I wanted to say.  I just somehow choked on my millionth cup of tea and it wiped out my brain content or something. 

ouch

I feel like someone punched me in the face today. Fortunately that did not happen, I merely had a root canal.  After the last few days when the pain radiated clear to my shoulder and I took contra-band (not supposed to take with lithium and especially now because my level is up) ibuproferon because nothing else helped, I was pretty sure that nothing the dentist did could top that pain.  And I was right, but I am sore.

Last week he told me that since this tooth was already crowned that he would go in through the crown and that it would or wouldn't survive the procedure.  He also said that if the tooth was in too bad of a condition from the deep crack it already that I would have to have it pulled.  So obviously the best possible scenario was that I would leave with a crowned tooth and no need for a new crown.

When I got there and told him about the pain he started tracing the swelling and the pocket of nastiness under my gum.  He did the drilling, which is unpleasant sounding going through metal and porcelain (you can hear bits fly off and the drill is slowed by the materials so it sounds really ominous) and found what he had expected and hoped for (although not the least painful scenario).  2 of my tooth's roots had simply died.  The last was putting up a valiant fight and so it was infected, swollen, and very irritated.  In fact it was irritated enough that I kept needing more and more numbing and there are limits to how much of that I can have with the MAOI.  Finally he said that we had about 20 minutes before I felt pain and he was going to get it done.  He did and then they put a filling on the top of the crown and gave me antibiotics and painkillers (this was partly because of the holiday and partly because of how irritated it already was in there; usually you get out of these things).

The pharmacy was a bad experience. First someone made a left turn into it in front of me and didn't pull all the way into the parking lot to let someone out.  I was stuck blocking the traffic in a busy, fast area of town.  I honked; they ignored me.  I honked again, twice.  They let someone pull out in front of them.  I was less than pleased. They didn't ask if i was staying, just said 25 minutes.  I got bored and went back to the pharmacy where they had my antibiotics but no painkillers.  They said they were out of the dose of vicodin I was given but I could have some tomorrow after 3.  Out of my drooling, drooping mouth I pointed out that I had about 30 minutes until it hurt a lot and that it would be best if I had pain meds now and asked them to transfer it to across the street.  Lo and behold someone found vicodin for me but they made me wait another 15 minutes.  I couldn't figure out why nobody paged me in the beginning to explain the situation and fix it immediately.  For some reason they chose to call my cell phone instead of looking for me in the store and since my phone was in the car I didn't get the call.  It was really annoying since it should have been rapidly resolved and they should have checked "the back" before saying they didn't have any.

So I got home and slept most of the afternoon and have been trying to distract myself from the pain for a couple hours.  It's not terrible, in many ways not as bad as the last 2 days were, but my gums are really irritated from the infection and dental tools and the swelling makes it hard to not bite down on the tooth which is a little elevated right now.  But I just realized that I forgot to take more vicodin and I've been due for a while so that would be the reason it hurts.

I am just so glad that this is over and that I still have a tooth. I am newly on dental insurance and couldn't have work covered until April so this is all out of pocket.  I'm so glad I'm not paying for a crown as well. 

Oh boy

I got my paperwork for medicare a month ago but haven't been brave enough to search for plans until today.  I didn't thoroughly look and I avoided the drug plans but I did find out that I can't get a Medigap policy.  That means that all co-pays come directly from me.  I had hoped to pay for the Medigap to reduce my costs a bit since I have to pay 20% of everything that isn't inpatient and inpatient has high costs too.  Ohio is behind in requiring Medigap for disabled people and while I know it is possible it isn't possible in this county. 

This is going to make some decisions for me.  I need to have ankle surgery and I need to do it before too much more time passes as my ankle is turning in more and more and my achilles is getting tight.  As I understand this surgery it requires quite a bit of physical therapy.  I am going to be better off to be on home health to get that than to go to outpatient. Which is probably fine; I probably will be homebound then anyway more or less and it pays 100%.  But I just never thought that this would be something I'd need. 

I wish there were ways to know what exactly co-pays will be with Medicare rates.  Going on Medicare is really hard without knowing that because I can't plan ahead.  I have no idea if I'll get any assistance from Cleveland Clinic if I have a huge bill (surgery) as I'll be applying for assistance as an exemption instead of just qualifying as I do now.

I hate this waiting thing.  I could do a managed medicare program but I need to know if Dr. Body participates and if the whole thing is a good idea; those can be huge rip-offs at times.  I know a lot about it but not what to do.  So I guess I do the easiest to understand way this year and change next if necessary.

Ack.

Hopeful

I saw the dentist today.  My tooth is not infected but based on several things he feels that it is dying and it is time for a root canal.   This was further indicated by the 10/12 days of migraines lately.  He thinks it is likely that the tooth is contributing.  So, between the supplements I'm slowly adding to my daily pile o' pills  (and for the next week or 2 antibiotics) there is hope that I'll get some pain relief soon without needing too many $35 pills (before the discount I hope still works).

The tooth may not be salvageable.  It has a crown already because of a deep crack from grinding.  If it is too destroyed in there I'm going to lose the tooth which will lead to further expenses in getting some kind of fake tooth.  That disturbs me; we already are anticipating dental troubles and this is kinda my fault a little in that I'm not good at wearing my bite guard.  That is only partly my fault and partly it is a consequence of sexual abuse and the dentist knows this (without an actual discussion; gagging just goes with it) but at the same time I know my teeth are at risk because of the constant dry mouth along with grinding and I can't afford to start losing them now.  If it can be saved there is still the really fun question of "can this crown handle drilling?".  If it can't I'm out about double the money for a new one. 

So the point of that is that it is going to be a long week of waiting to see what happens but also I am so relieved that there is something wrong that might be fixed.

Otherwise I discovered today that after working on eye contact with Dr. Mind and really with ANYONE for the last 3 months I found the one person I will make eye contact with.  The dentist.  I have no idea why.  He is wonderful but hardly my best friend.

My house has electricity!  Some lights turn on and the microwave is in place and presumably works.  This is very exciting.  It was nice to finally really see in there.  By the time the workers leave it's generally getting later and dimmer.  So this is a nice step forward.  Now for the other 200 steps (including water, heat, and a toilet) and I may get to live there in 2013.  It's been hard lately because there have been several things that have not been done correctly and have required re-doing.  The one making me the most angry is the storm door.  I bought it open box and the directions were missing.  My mother offered to print them off and the workers said they were fine.  The first day they didn't put the hydraulic things that make the door close right on.  This door has 2.  The top just opens and closes the door; the bottom does that and has a button on it that is how you hold the door open.  Both pieces were there after the door was first installed.  I saw them.  Now the top piece is there, the door doesn't close unless pulled shut and the other piece is missing.  They say "maybe it wasn't there".  No, it was.  I think it got thrown in someone's truck thinking they could get away with not doing it right.  I had the same door at my old house though and so I know what is wrong.  But we had to order replacement parts for $35.  My mom is most upset because way back I told them I wanted white outlet covers and light switches.  Like a number of things I told them and gave them in writing and which are written on the floor plan kept by the company in the house they ignored this and put in almond which looked terrible.  Then my mom has to complain and have them redo things which they in turn are a bit annoyed about.  My mom has had a good relationship with  them for a long time but this time there are too many people doing the job and communication on their part has sucked.  I think the project has just gone too long.  It's only a few months from when my mom went to them for a bid initially and we're 3 months into construction of a tiny building.  It's frustrating.

I have to get my pills put away before I knock all the bottles off my lap making a huge mess.

All is not lost-medication redemption maybe

I saw Dr. Brain this weekend.  As always she is willing to spend time to make things work, which the neurologist didn't.  I don't expect her to, it just would have helped to be sure that I had a script I could pay for before sending me away for 3 months.

Dr. Brain tried pricing every triptan (migraine med group) and then cross-checking with my ability to pay.  They are all horribly expensive.  The best she found was still more than I could pay.  I left knowing that I was going to be able to buy about 1/month and hope I hit the worst headache with it.  She did clear me to take some supplements from the list the neuro provided and said another patient who has similar symptoms of bipolar plus similar med issues and migraines just started the same group of supplements and is doing well.  I had asked about magnesium in the past and Dr. Body wasn't thrilled because of my wobbly electrolytes.  But looking back at them I have stayed very stable at the low end of normal so I'm on magnesium now.  It isn't supposed to be a laxative dose but I will be cutting back on my prescription laxative tomorrow.  If it is handled ok then I'll be adding melatonin and Co-enzyme Q10, one at a time. 

When I got home I was searching for more information on the triptan and stumbled onto a website called www.internetdrugcoupons.com  .  If the thing works and there's no obvious reason for it not to then it is going to mean I can get 4-5 triptan pills per month.  The site has tons of offers for different meds, both OTC and prescription.  This one is really good; I spend $10, they will pay up to $100 and even gave me a link to find the lowest prices.  So I think for $30 I'll be able to have 4 or 5 pills.  Not the 10 she hoped for but something.

Today has been mainly headache-less, just a little bit so I can't say it's a free day but it is a better day.  I think today's could be sponsored by my toothache.  I see the dentist Tuesday to find out if I need intervention there.  I am hoping if I do he can do it that day because I don't want to spend a lot of time thinking about needing a root canal in a week or whatever.  I also think the toothaches add to the migraines.  And I am supposed to have the girls Friday so I want the thing done as long before that as possible.  Fridays are extra fun with the girls because my sister takes Anne to playgroup and I get rare 1:1 time with Geraldine.  Last time she slept nearly the whole time and I read while holding her.  That's not as much fun as playtime (or naked butt time which she thinks is hilarious) but after Anne has lunch on playgroup days she usually needs decompression time which is more baby time and then combination of baby and Anne time.  Anne and I have a routine now where we always paint her nails, we always work on letters because that is her big interest right now (last time she wrote half my name before being stumped by N), I try to bring a little craft project to do with her, and we are reading Shel Silverstein, usually while I'm giving the baby a bottle.  I have a great craft for her if I only can make myself endure the craft store which I desperately need to do tomorrow.  Soon we'll be making paper chains.

Anyway, I don't want to miss my big day because of toothache.  I don't plan to; I worked the day after my other root canal and that was so infected the doctor offered to show it to me and then said I was 1 day of hospitalization with sepsis.  This shouldn't be so bad.  I hope.  It's been hurting for months but got a lot worse lately. 

No other real news.  The work on the house seems to have totally stopped.  The inside is done except for electrical stuff, installing the toilet and getting appliances.  Everything that is still hanging is vital and halted completely, like turning electrical wires into outlets and things; finishing ductwork and the furnace installation; bringing the water line up to the house; finishing the septic system and connecting it; getting a hot water heater in; installing the garage door.  It's all vitally important things and it's so frustrating to see how great it looks in the living area yet I can't live there.  Hopefully this week people will pick things back up.

And that's it.

No wonder I was grouchy

I now have a reason for my grouchiness and removed post from last night.  I have: a migraine, day 2 and I've had one for 9 days of the last 11 including one of the worst ever last night; a toothache; and a cold with a fever.  Oh, and somehow I have misplaced my cell phone in my bed and I don't feel like moving to find it.

I also was looking for my thermometer and brought over a little bag that has toothpaste, a comb, etc. that I use when I travel.  Toiletries bag?  Whatever.  I had blown my nose and was sitting her wondering why it smelled like the psych unit.  That bag has absorbed the scent, probably from being in a dresser drawer each time.  How weird, a little way to visit 6N from my own home.  Yippee.

I have to find that stinking phone.  I need to refill my meds.  Looks like I'm refilling the vicodin since I sure won't be using much of the $400 migraine medication....

Sorry

I posted something last night, now removed, about insurance in which I was pretty impatient with views other than mine and my lack of tolerance. I apologize. Yesterday was a very rough day and I wasn't fair. I did not say what I meant well at all and for that I apologize. Copyright 2006 www.masterofirony.blogspot.com

Waste of time

I am writing this from an extremely grouchy place.  I got a migraine on migraine assessment day.  Unfortunately it was a very bad one and they kept shining lights in my eye.  Then I stupidly thought I could drive home before it got worse and that didn't happen.  It's still annoying me but doesn't seem to be getting worse.

I got good news, I thought.  I can take a couple of triptans to stop the migraines as long as Dr. Brain approves.  Unfortunately they didn't take the time to see if patient assistance would cover them and if I am eligible.  One company covers it but I'm just over the line.  The other company I'm eligible for assistance but the triptan isn't offered.  The one I was prescribed is $400 for a month's supply.  With a discount.  The other one is just as expensive.  So they sent me home with nothing useful except 2 free pills.Yippee.  That probably won't get me through the next 3 months until I have insurance.  Not trying these means that I will presumably not be eligible for Botox when I go back, because I think I have to have failed on these.  And perhaps in 3 months when I can actually try them they'll work. 

Three months is just so long.  I waited 4 months for this appointment and fought the migraines for months before that..  And essentially all it did was get me a diagnosis of migraines and a list of supplements Dr. Brain might let me try.  And one of the worst migraines I've ever had, of course.

I am so discouraged right now.  I don't know what I thought would happen really.  I was under the impression from my doctors that I would probably go to botox now because I couldn't take triptans.  But there are 2 I can take, which is great.  I won't be able to afford the co-pay on botox either.  I was hoping that I would get to try that while on patient assistance.  The dr. laughed and said that wasn't a charity care option because it is expensive.  I think she's wrong; it says any medically necessary treatment is covered. I honestly didn't like that comment much as it felt a bit like "oh, you're poor...well, that costs too much for the likes of you, too bad if it would work".  But I was so tired and in so much pain I can't really judge.

I am just so tired of having a throbbing head and I'm furious that I can't treat it because I am uninsured and not independently wealthy.  I have 20 migraines or more per month so the 10 treatments per month was going to not cover a lot.  With being able to afford maybe 2 pills per month (at more than I pay for any other 90 day supply of medication) and that would be a stretch this is pointless.

And so I wasted a day (it feels like that tonight anyway) and I'm still left not treating most migraines and knocking myself out with vicodin if I do "treat'.

Maybe if I just ignore it the migraines will go away.

Teeth

There is a lot of information out there, and even on this blog, about side effects of psych meds.  One that gets ignored a lot is the damage to teeth.  Having dry mouth all the time is hard on your teeth. 

I am fortunate to have a dentist who is knowledgeable about psych meds because his brother is also bipolar.  So when I first went to see him and my front teeth had something like 28 cavities/pre-cavities because of years of vomiting from lamictal and lithium and then 6 months of vomiting daily from lithium toxicity, he didn't blink, he just fixed them.  My front teeth are great looking but they are mostly porcelain.  In the first week I knew my dentist I had those 4 teeth repaired and then numerous other fillings.  I was in their office daily for a week.

Since then I have broken 2 teeth by cracking them deeply, one clear to the bone, by grinding my teeth.  That happens with stress but it is also a side effect of multiple psych meds.  One tooth has a crown and the other has a root canal and crown.  That one nearly landed me in a hospital because my impaired pain tolerance (also probably medication related) made me ignore the pain until it was badly infected.  After that I got a bite guard but I have a hard time wearing it.  Everything dental is complicated by my gag reflex.  It's a common problem in people who have been sexually abused and I think that knowing that is why my dentist is so very kind about keeping things as calm as possible for my visits.  The tooth that just has a crown is fairly painful and I suspect that I'm going to be getting a root canal.  I have been having pain for a while but it has gotten a lot worse in the last week and tonight it is just painful and the gumline looks icky.  I don't know if they are in tomorrow but I may have to face it and go.

Stress injuries aren't the only problem though.  I am currently sitting here doing a home fluoride treatment that I am supposed to do nightly.  However it involves the stuff staying on your teeth for 30 minutes and I can't always manage.  But it is important because 2 of my teeth are losing enamel because of the dry mouth.  My dentist said he is "worried about me" because my potential for big problems seems to be great.  I have 2 or 3 more fillings that need to be done but I don't have insurance coverage for that until April.  I have a bunch of sensitive teeth, again probably from dry mouth.

They did give me a few things to help with dry mouth.  Taking a probiotic and calcium supplement can help.  I was already doing that.  I was told to switch to a toothpaste with baking soda (I'm using Mentadent) and if I could find a gum with baking soda that this would help a lot.  Apparently they used to give it out as samples but what they had isn't made anymore.  However I found some called Ecodent on Amazon and I chew it a lot when I'm not near water.  It truly does help although buying gum in bulk feels weird ($20 of gum???? But it is a lot of gum).

I'm a little scared tonight of what else can happen with teeth.  I hope I'm wrong about needing a root canal, especially since this tooth is already crowned and a root canal could potentially mean a new crown plus the root canal, all out of pocket.

I'm also afraid that I will start to lose teeth due to this.  Back when I had my root canal and 2nd crown someone at work asked why I wasn't just getting it pulled.  The simple reason is the dentist wants me to keep as many teeth as possible.  Between grinding and breaking them (I chip my teeth as well as cracking molars so I am constantly needing things evened out) and the weakness in the enamal it's a little scary.  The dentist also says tooth strength and enamal strength are partially hereditary and that's not a good thing either.

But mostly......psych meds hurt teeth.  Ugh.

Insurance-My thoughts

This is a very divisive issue right now and I don't mean to offend anyone as I'm positive some of you won't agree with me.  But I am going to post this because somehow this insurance thing has become less of a narrative and more like 2 sides of a very tall wall.

I babysat my nieces today and happened to be there when the insurance statement for Geraldine's surgery arrived.  My brother-in-law told my sister and I the total and that they didn't have to pay any of it because they'd met their deductible/out-of-pocket, probably with my sister's surgery 3 weeks before Geraldine's.  My sister was horrified at the cost and then burst into tears.  "What," she said, "would we have done without insurance?".

It is part of the process of dealing with having a baby who needs major surgery when her life is measured in days, not months.  The shock hits over time and in the case of this diagnosis there will be ongoing testing quite frequently for a while and then tapering off over the next several years.  There is a 20% recurrence rate and some percentage of those recurrences will be malignant.  The goal is to catch any recurrence and remove it immediately.  All that a recurrence requires is one cell to have been missed during surgery.  This part, the part where she has a congenital condition and not "just" a tumor, that takes a while to hit because while she was waiting for and the recovering from surgery  those things didn't matter.  What hit my sister today is another variation on that: how could we manage all this expensive and necessary care without insurance?

The answer is that it could have been bad.  Realistically they could have gone to Cleveland Clinic and been in the same program I'm in assuming their income qualified them.  In other states there are Medicaid programs; Ohio doesn't participate although she might have qualified for something.  (Sort of like I have Medicaid....as long as I write a check for 87% of my income they'll cover other medical bills that month.)  However that is a very, very long trip for them and would have made a difficult situation much more difficult. Also, Geraldine's condition is rare enough that pretty much one surgeon in the state is experienced with it.  She needed that surgeon and she may need him again. 

Insurance means her parents don't have to decide if they can risk skipping tumor markers.  Insurance means that if she needs more surgery (and I pray every day that she doesn't) that it will be covered.  If there is a suspicion that she has recurrence she can have an MRI and be sedated and it won't bankrupt her parents.

The changes to insurance are also important for her.  It used to be that she would have had trouble finding coverage if there was ever a break in her insurance.  That happened easily when your insurance dropped you while you were in college as happened to me.  It was 8 months before I could get coverage through grad school.  There are no lifetime maximums.  That's important because she is a baby and if something bad happened she could hit a maximum while on chemo.  After grad school I had a job without insurance.  I nearly had to quit it because it was so hard to get insurance because of my history of plain old depression.  One company declined to cover me because I didn't have 28 day menstrual cycles.  Eventually I got terrible coverage with a $10,000 mental health deductible and no psych hospitalization that required me to pay 30% of medication costs.  By the time I finished the clinical trial I was in I knew I had to get group insurance and i did.  I was ready to leave that job but I would have had to no matter what because  30% of my meds was a big proportion of my income.

I don't think I've said much about this here but I am facing some of that type of coverage issue.  I'll have Medicare in February.  However there are a lot of deductibles and I realistically need an additional policy called "Medigap".  Unfortunately those policies are not required in this state to cover disabled people and when we are covered it is very expensive compared to someone who is 65.  I'm not sure what will happen with this.

I have been without insurance for nearly 2 years now.  I have made it through because of Cleveland Clinic's incredible charity care program; medication assistance from pharmaceutical companies, especially Astra-Zeneca which has given me something like $40,000/year of medication; a family doctor who trusts my judgment and has treated me via email for all of this time; and charity cards for pharmacies that have reduced my out of pocket drug costs.  I also have been able to use this one pharmacy chain that is local to northern Ohio and has drastically lower prices than others. 

I have made it through this uninsured time as well as anyone could hope to.  All of those things pulled together for me.  However I have wondered many times what would happen if there were an emergency.  Back in the spring I fell down a flight of stairs face first.  Had I broken a bone I could have made it to Cleveland.  If I'd had head trauma I would have been forced to use a hospital close to home.  If I had an asthma attack I couldn't wait hours to get to Cleveland.  When I was on vacation I had a severe migraine that my doctor said I should go to an ER for painkillers to break it up.  I couldn't because I would have had to pay for it.  I just got dental insurance.  It has a 6 month waiting period for fillings, crowns, root canals, etc.  I have a tooth that already has a crown that I suspect either needs a new crown or possibly a root canal.  If I can't make it until April that is 100% my responsibility.

While I am grateful beyond words for Cleveland Clinic's charity care program and all that it has helped cover I also know that this program comes partly from having higher rates for insured people. Which means that co-pays are higher and other people may struggle.  I paid co-pays for years and I know they aren't cheap.  Charity care is a stop-gap.  It is not a solution.

I'm the very weird person who is uninsured but not getting insurance through the affordable care act without paying a penalty.  My Medicare starts before that would kick in.  I can tell you that if I could choose Medicare and an ACA policy it would be the ACA policy.  I also can say that I am glad for the changes that are coming.  Not all are good. Of course they aren't.  But if no new mother cries ever again because she knows that many babies are born with much worse conditions than their own child and these babies are not covered by insurance and consequently don't receive the absolute best care imaginable, which they deserve.  Every baby should get the surgeon who operates on their rare tumor the most.  Every adult should not live in fear of the asthma attack or injury that requires use of the local hospital (which I hate anyway; awful experiences and awful care, but in an emergency you sometimes have no choice; I always should be at Cleveland Clinic because of my MAOI/psych med issues but that's not realistic).

I know our country isn't done with this fight.  There are many sides and like most people I do see good and bad.  But today was a lesson in gratefulness for something that seems so basic: an infant had a good surgeon cutting into some tender tissues and skillfully removing a large tumor, and if it grows back the skillful surgeon will repeat this.

Ongoing

I am still not doing very well.  My moods change rapidly and drastically and underneath is a depression that makes me want to sleep all the time.  The combination of time change, med change and time of year just weren't good. 

I kept telling Dr. Mind "I know my light box is in a box labelled with that.  I don't know why I didn't keep it out.  I need it."  He gently suggested doing whatever was needed to retrieve it ASAP.  My mom and I went to the storage unit and I dug around and found boxes from the right part of the house but not any that said anything about the light.  Finally I gave in and opened "medical supplies", which translated into "asthma gear for when I'm actually sick".  At the last minute I opened "items from chest" and there, clearly NOT labelled anything relevant to SAD lamp was the lamp.

So now I have that one part of the way out of this. The only problem is that I use a special lamp to prevent mania from too much light at once.  I couldn't even try a light until this kind came out.  It lets me adjust the intensity and time the light is on and I gradually increase them until I find the right mix between agitation and depression.  That can take a few weeks or a month.  So that solution is going to be slow.

In the meantime everything is frustrating.  I want to be on my own again.  I want MY mattress.  Oh do I want my mattress.  I want my cats to have space and I want to feed them on a normal routine so that the old one eats more.  (Here they eat in the bathroom and she is nervous about the toilet flushing or water running so she doesn't eat enough).  I want to be in a bad mood without explaining it.  Etc.

If I weren't so tired some of this wouldn't matter.  I know that.  But I AM this time and I really just want to sleep, not apologize from being grouchy all the time, not try to explain why I am cycling. 

Tomorrow is my day with my nieces.  It will be good for me but I dread the fatigue at the end of the day.  Apparently Geraldine wants to be held more this week because she has a stuffy nose and I know that makes things much harder with Anne.  Geraldine is also shifting her sleep patterns from sleeping all morning then playing for a bit in the afternoon and taking shorter afternoon naps to being more awake in the morning and sleepier in the afternoon.  Anne though is excited that I'm coming and that's good.  Last week was a little rough with her so I'm glad she wants me back.  It's hard that all her adults are operating on different schedules right now.

Anyway, I should work on sleeping.

That's the end of that

Last night I didn't take any topamax.  I wanted to see what happened if my blood levels dropped off significantly.  And what happened was what I didn't want to happen and yet did. 

It looks like the paranoia and maybe the mixed episode was the topamax and not just my brain.  With a lot less in my system I felt a lot better today.  Little to no paranoia, manageable mood swings.  And at this time of year manageable mood swings don't bother or surprise me, especially this year because my SAD lamp is packed in my storage unit. So I guess I'm done with topamax unless things happen in some order that makes Dr. Brain agree to re-try it in a few weeks.  I don't think that's likely.  Paranoia to the point I'm scaring myself is a pretty good sign there is a problem.

I'm trying to look at this as it was a nice 6 weeks followed by one not nice week and it's hard to tell where my mood will go at this point.  Maybe I'll be ok.

It's stupid but I most hate that I have to tell Dr. Mind this failed.  He has been so excited for me.  6 weeks without major symptoms has been such a huge break compared to the last few years.  He really probably was too excited, offering me the chance to decrease sessions, when it had only been a long stable period if you compared it to the last 2-3 years. 

I'm hoping that I will not get significantly worse.  I'm sure that there will be some changes but I'd like to be able to keep working on the more advanced counseling topic we've been trying to handle lately.

I spent the day with my nieces.  I had the baby alone for 2 1/2 hours which was fun.  She slept most of that time but she is developing a personality when she is awake and she is just so sweet and easy.  Her sister was never easy.  Geraldine's mom was going to be back just about nursing time and asked if I could try to hold her off without upsetting her.  She made it over half an hour of hungry with a pacifer, some books, a couple rattles, black and white images, a mirror and Aunt Jen making funny noises and faces.  She was hungry and yet smiling at me.  And she has that huge toothless baby grin that makes you want to have her smile always.  Anne and I painted her toenails (the first time with glitter), worked on spelling our names with stickers, made a princess with stickers and my poor drawing skills, played 2 different games several times and read.  She is learning to enjoy Shel Silverstein (carefully edited 'cause some might not be great for her) and she curled up for a long series of those while I gave the baby a bottle.  Sometimes it is still hard for her to share Aunt Jen and we sat under the kitchen table and talked about that too.

It was a good day and I am worn out.  Hopefully the weekend will go ok as my body adjusts to pulling the topamax.  I just don't feel good about taking any more of it.

I can't believe I'm saying that.  I had really begun to believe that i had found something that could bridge the gap between now and new anti-psychotics.  Guess not.

Bam

I had a migraine that started Friday and Tuesday was the first day without any symptoms.  Sometimes migraines make me a little hypomanic, probably related to a lack of sleep.  I had at least one night and maybe 2 when I felt too bad to sleep.  I ignored how I felt until today when I realized I was EXTREMELY irritable and also getting quite paranoid.  My hypomania had become a mixed episode.

I think that I noticed it more quickly than I might have in the past because this respite has been the first in so long.  The paranoia was significant though.  First I was very upset because gold hardware/knobs were used on the interior doors in my house when I requested silver because I do not like gold.  It's just a me thing, gold isn't my favorite.  I had requested this several times and I felt totally ignored.  I felt myself blowing it totally out of proportion.  At absolute worst I spent $30 and spend a day redoing it.  Life goes on.  Then I called my mom at my sister's and she was weird on the phone and texted about "something going on" or something.  At first I was sure that I had done something terrible and would never see the girls again.  This in spite of the fact I'm scheduled to watch them Friday.  I even thought about the suicide attempt that would go with that.  It scared me.  And then it got even worse because I became certain that Geraldine's tumor markers were back and were elevated.  That led to a crash course in recurrence of her tumor.  It recurs more than I'd like but not for months after surgery.  So I can relax there.  I'm not sure they even test for the markers yet.  It turned out to be a very stressed sister needed help being 3 places at once.

It seemed strange for topamax to be the culprit because I've been doing well on it for about 3 weeks and was ready to increase the dose.  I emailed Dr. Brain who said that I needed to remember this is my biochemistry and I should be careful and lower the dose if this continued.  By med time I was pretty sure that I was too mixed to risk it and so I lowered the dose.  I had mood response on this dose before so maybe it will be ok.  Or it won't and if it was this med holding me and another trial of the higher dose fails then we'll know it worked but not well enough.  And so my break from symptoms is over.  7 weeks is huge after the amount of time I was so sick but I thought I might maintain this.  But unpredictability is the name of this annoying game.

Ceilings

There's no deep meaning in that title.  I am so stressed about ceilings.  Yesterday I had an early phone call from the construction company.  She said that the drywall man usually does a mild texture on ceilings and did I want this.  I thought a minute, decided I liked the texture at my old house and said yes.  It turns out that my mom adamently opposed textured ceilings because they are out of date and she is afraid they'll hurt the property value.   I honestly can't see that happening; nobody is going to say "I like the entire property but I hate the ceilings in the mother-in-law apartment so I won't buy it" and I honestly dont see someone even caring.  It's not like it's the primary part of the house.  But because my mom had told the construction workers she wanted smooth ceilings she feels like she was ignored and she is frustrated.  I feel completely guilty that I didn't call her at my sister's but up to now she's generally said "it's your home, you decide".  I'm very happy with it.  And I can't see how it is out of date if the drywall guy usually does the texture.

The whole house is frustrating now.  The heat pump is partially in but can't be completed until we have electricity.  Mom called about that months ago and was told to just call when ready, it was an easy hook-up.  We were ready this week and suddenly we have to have an inspection and then be on a waiting list for a transformer that could have been done months ago had anyone mentioned it.  They called today while we were gone and made it sound like we missed our chance by not being here.  Then there is the septic issue.  The contractors were trying to quietly just link mine into mom's.  The inspector caught us.  After some discussions that included the county agency contacting the state it turns out that if we had contacted them prior to building we could have gotten some grant $ because of my disability.  Now the only grant money we could get I make a tiny bit too much to receive.  They are working with our plumber to try to find the least expensive solution.  They had another meeting with him yesterday but we don't know results.  So pretty much we start our 3rd month of construction in 3 days and I am still a long way from getting in.

My mom and I need space.  My cluttered bedroom (because it is packed full of stuff that has nowhere to go) and smelly cat litter and food is wearing on her.  Her tendency to be bitter and complain a lot is wearing on me.  And I just want to be able to cook for myself.  What she eats is good, it is just not what I eat.  I'm probably 85-95% vegetarian, depending on my mood.  She isn't.  She also keeps junk around that I eat when it is here but don't when I don't have it.  My cats are becoming pathetic; they really need space and windows to see out of and more time with me.

One more month and I think I'll be moved.  But that month seems really long right now.  I've been here 5 months now and started packing in April so I haven't lived in a 'normal" home in 7 months.

It's not all bad nor is it THAT bad.  It's just frustrating.  We were so sure that I'd be moved in by now.  It seems like everything left to do should be fast but that has seemed true of many things.  It's hard to focus sometimes on how great parts of the house really are and how much I"m going to love it.

And on the plus side it will take a month to put together everything from Ikea.

Tip for the completely insensitive

Which I know none of my readers are.  I just want this to be out in the world so that maybe someone insensitive will read it before saying something similar.

I was on the phone with someone as close to family as you can be without being actually related and I said something about how shocking Geraldine's diagnosis was because we were all sure her test would be normal because Anne's test for the same thing was normal.  And then it wasn't.

And this person said "Well, she's going to have more problems."

And THAT, you do not say that.  The problem she had occurs in isolation.  It happens early in development and it's not something that means she has multiple tumors in her body.  She had one and it is gone.  It could come back and it could come back malignant but she is very closely watched for that and if it comes back it will be caught very early and killed very early.  The cure rate for that cancer is about 90% and a lot of the deaths are in kids who weren't diagnosed initially until after the 2 month mark when the malignancy rate increases to 5x what Geraldine's was.

She doesn't have risk factors for anything.  She's developmentally on track, she is happy and growing.

But after what she has been through it is very hard to not worry that everything is a sign of another problem.  And that is why affirming that fear is nothing but cruel.  I don't know when I will stop staring intently at her trying to be sure she's alright.  I do know that time hasn't come.  Perhaps when she is 3-5 years old and is cleared from follow-up (or it is reduced to annually, not sure about what happens).  I'm sure then we will feel anxious for a while about what if it is growing and we don't know? 

Compared to other diagnoses, diagnoses that we were given as potential causes of her tumor until she had an MRI to determine the type, all of this is nothing.  One cancer that was possible is extremely fatal and extremely evil on the way to death.  It's probably one of the worst ways to die in childhood and I can't tell you what it felt like to see that on the list my sister had scrawled.  Had it been that we would have been spending time saying good-bye about now and that would have been infinitely worse.  But you also can't go there.  It's too hard.  You have to stay focused on what did happen and what you pray won't happen.  You certainly can't focus on made-up things that could go wrong.  (There are no syndromes or related illnesses related to her tumor.  This statement is just something he has decided).

Not a good thing to hear and I'm writing this so I can let some anger out.

Well

I had a bit of a surprise yesterday.  I saw Dr. Mind and he let me know that if I wanted to I could try to cut back to 3 visits per month.  I'm not interested but it's one more thing that doesn't seem at all real after being so sick for so long.  I have things I want to work on and while I'm not sure he thinks I'm going to make enough progress to be happy about it I want to try.  Also I just don't think that 7 weeks of doing well is incredibly significant compared to 2 /2 years of being so sick.  I know he's saying that because I haven't had much to say for a while and I guess I was just taking a break that is now over, but we needed a break.  I am much happier with him now that we aren't fighting frequently.  I know that he was right in our final, I completely lost it, disagreement, but I don't like admitting it.  However he unintentionally made me so angry that I stopped being that angry and let the anger out instead of being so bitter.  The other thing that is stopping me is just that I'm on so little topamax.  It's helping and that's fabulous but I'm not sure I'll get to enough to expect the dose to last.  After months of working on this dose I'm on a whopping 37.5 mg.  We're going to be pleased if I get to 50 mg but 100 mg or much more is needed for it to really work and the higher the dose the more risk of cognitive problems which I'm at increased risk for because I've had so much trouble in the past.  I just don't trust this yet.  It's great that it is helping and I think if it fails it opens the door to trying one other med which I can't remember the name of but which is also a weak mood stabilizer that is good for some people.  I don't know if I can afford it but (hold your breath): I HAVE A MEDICARE CARD!!!!!!!  It's just paper until February 1 but I HAVE A MEDICARE CARD!!!!!

I've been spending money fast enough to horrify me.  I went to Ikea and got a lot of things needed for the new house.  Consolidating and making up for things I've made do without for years meant I needed some furniture and closet organizers.  I really did well considering that I got everything for what it would cost to buy just a couch at a furniture store.  Obviously it won't last forever but it will be fine and putting things together should keep me busy for a month or so.  I got brave enough to see what that did to my budget today and it was ok.  I still have enough for appliances and have left-over for things like curtains, my first ever new and not wobbly ironing board.  I have appliances ordered and still have the money to pay for them without disturbing the fund for when things go wrong with the construction (like needing a septic system).  And I still have money for curtains, cleaners, and a few things that will be sure to pop up and if not I'll be able to buy Christmas presents.

Otherwise not a lot to say.  Dogsitting today and tomorrow.  Tomorrow I'm hoping to feel up to doing a few things like the bank, post office, paint store and assembling a chair or two.  We'll see.  A weekend with the nieces took a lot of energy.  Sweet, sweet little girls...

No attorneys this time

I had a comment on a prior post that was comment spam and as I addressed it I decided to post it. The post was one of my sidebar ones and is about the process by which I obtained social security disability. For those who don't know I applied in February and was approved in April through a process that puts information into the reviewers' computer system and if the computer determines that you absolutely will be approved you are not reviewed as closely by people, saving time and money on their part and knocking what is usually years off the approval process. Not many psych patients are approved this way and it was a complete shock when I was. I believe I made the reviewer tell me 4 times. But the comment seemed to be more of a post, so here it is. And by the way, I am using paragraphs but blogger isn't following through on my orders for some reason. Sorry about that. Lest there is more comment spam that I don't catch: I DID NOT USE AN ATTORNEY. I do not necessarily think this is the route for everyone, but for me it was the right thing to do. I did a lot of research prior to deciding that I could do the first step without assistance. The reason that I decided that is that I was professionally trained in filling out government forms and in analyzing people's abilities and need for assistance. There was nothing in the first round that was not beyond the scope of what I did for 11 years as an OT and so I was comfortable trying on my own. I also knew that most people fail the first step just on general reviewer principle and so I decided to not spend money on an attorney at this point. I didn't think it was going to make much difference. And I was right, although not in the way I thought I would be. The way that I was approved meant that little that I did had much meaning. I was approved because the computer read my doctor's forms and hospital records and spit out something that indicated there was no chance I wasn't going to be approved via mathematical formula. And so I was approved before undergoing the usually process. An attorney wouldn't have mattered any more than paperwork from my cat would have. There's no way to know that your claim will trigger this as not many do, but when it happens it is your history that matters. When I started filing Dr. Brain showed me just a small portion of the written files she had for me and she had many years of computer files plus 3 long hospitalizations on the psych unit and one medical hospitalization with a battle of psych symptoms with psych and medical staff. She said she had documented for years with the knowledge that the records might someday be needed for this. Dr. Mind's office had another enormous file. It was those things and not an attorney that worked so fast for me. I am all for using an attorney if you feel safer. Most people probably should. Most people haven't evaluated people's independence for years prior to applying. This was just something God prepared me for. Copyright 2006 www.masterofirony.blogspot.com

Reverse Hibernation

This is the time of year most animals are settling in to hibernate.  Usually it is the time I am joining them by beginning to use my sun lamp.  Unfortunately I packed that into my storage unit so I won't have it until a little later this year.

But instead of hibernating a strange and wonderous thing is happening here.  The Topamax is continuing to help my mood and anxiety and I am feeling better than I have in 2 1/2 years. 

It is the strangest thing.  I've had long cycles that felt pretty weird when I emerged in the past.  I have never had anything like 2 1/2 years of being so extremely ill and it turns out that recovering is strange.  So much has changed.  Even the things that haven't changed feel new because it was so long ago that I experienced them.  I am used to coming out of a bad period and having my life at least partially the way it was before the episode started.  But that is when the episodes were 6 months long and not as bad.  This is entirely different and it's an adjustment to be better and have my life virtually vacated.  I know that I need to get involved in some social things and have made a few tentative steps that direction but I know that I have pretty huge limits still.  I can't do big groups.  Smaller groups still will have difficulties as my social skills deteriorated greatly while I was sick and so finding places I am comfortable isn't easy.  I'm trying to find a NAMI small group because there nobody thinks it is weird if you can't look at them and when you talk in the wrong places and with the wrong inflection.  Between social skills and fatness I really feel uncomfortable in public right now.    The fatness could be improved with some clothes that fit but until the debt ceiling issue is resolved I am scared to spend money.  My social security check should have just arrived in my account and that will be the last of those if it isn't corrected in 24 hours.  As it is the spending for the house project (money that is already set aside in my mom's account for most things) has to continue and so today I bought a garage door opener.  It had good reviews but was not too far above the most basic model anywhere so I hope that doesn't backfire.  Appliances are ordered but not paid for except for my microwave which also serves as a fume hood.  It's just not in yet.  And then there is the major trip to Ikea coming up for a ton of things needed for completion.  Not sure what will happen there if the debt ceiling isn't met.  I'm past having any particular political affiliation, I just am begging God for them to work it out----and planning to vote every single congressional member representing me out of office if I can.  I did sent a letter to my representative reminding him that he is representing very poor people here, people who may be going hungry without WIC and children who are being placed at a disadvantage without Headstart and that some time of action would be good on his part.  I don't know that I care WHAT action, just something.  Which may sound partisan if I try to explain so I won't.

Both doctors are commenting on how good I look.  So much of that is that I'm not feeling terribly, painfully, unbearably anxious anymore.  Anxiety comes in bits and pieces (the last hour has been bad) but it is not all the time since the topamax has been in place.  Dr. Mind and I talked about PTSD and that the very hard treatment we did about that in 2012 has really paid off.  I don't have very many symptoms at all and often have none for days on end. 

The only bad thing is that I have poison ivy all over my neck and in patches on my face and hands.  I helped Anne pick up a leaf collection the other day and apparently my vigilance didn't stop her from handing me at least one pretty red leaf.  I found a really good product to dry it which helps immensely and so I'm only itchy when it wears off.

Tomorrow is the dentist.  I haven't been in almost a year.  I just got insurance (independent) last month and so it started the 1st and this was the first available.  I dread it because I know I have 2 cavities from the last time and I have some sore teeth from grinding and I also accidentally put my bite guard in the storage unit. 

Anyway I think I'm going to go roust the puppy in hopes he'll let me sleep a little later if he has some midnight exercise.  (My mom is at my sister's.)  I really am hoping he lets me nap tomorrow after the dentist.  I'm watching both girls Thursday and am nervous about it.  Anne never took a bottle so just doing that is a huge difference and we didn't watch her much when she was a baby because her father was finishing his master's and was home with her.  Now my sister works bizarre hours and my BIL works nights (although only 3/week right now as he is extending his paternity leave that way) and so things are very different.  But Geraldine is a much easier baby than her sister was and she will take bottles and she will sleep and I intend to mostly just wear her in the sling.  I haven't seen her in a while so I'm excited to see how big and healthy she is now.

And that's it from dazed and confused but much better.

Nellie Bly and I

I just finished reading a book called "<i>Ten Days in a Mad-House</i>" by Nellie Bly.  It made me think more than I have in a while about what I have even when I feel like I've lost so much (and I have).

Nellie Bly was a female investigative reporter when such things were not heard of.  In the 1880s she was assigned to feign mental illness and spend time as a patient in an insane asylum in New York City called Blackwell's Island. (Incidentally now all that remains of the institution is the grand staircase which has been renovated and incorporated into just what you'd expect....apartments...). After her report was published a grand jury undertook an evaluation of the asylum's care and the process by which a woman might be sent there.  As a result nearly $1 million per year was added to the budget of Blackwell's Island Asylum.

It's a fascinating read regardless of your experiences with psychiatric care.  It's mind-boggling to compare it to care today, especially as an experienced patient (I have a total of a month on a unit accumulated over the last 4 years so I'm very experienced).  It is common knowledge that inpatient psychiatric care is not where anyone wants to be.  For many years I fought as hard as possible to avoid it because it sounded terrifying.  As in many aspects of treatment I was fortunate to avoid it for as long as I did and I owe several people who have treated me a great deal for that.   

 I want to write about some of the today versus yesterday and my own experiences.  I have spent nearly an accumulated month on the psych unit in the last few years and so I feel well-acquainted with what happens there.



<b>Admission</b>

Nellie Bly:  For the author to be admitted she had to convince 2 doctors she was "insane".  She practiced making faces that she thought might promote this belief in the mirror for an evening then went to a boarding house and behaved in a fashion we would probably just pass off as "odd".  In that time she actually frightened people who called the police who took her to a judge who ordered psychiatric evaluations and that she be presented in the newspapers to see if anyone would claim her or know who she was.   She was taken to Bellevue and spent a night there seeing various psychiatrists and then was sent to Blackwell Island.  Upon arrival at Blackwell she was told she would be there forever.  No introductions or explanations were given; she and the others who came with her were simply told to sit in a room with a bunch of other women.  It didn't take much to be admitted then; women especially were admitted for things such as disagreements with their husbands, for having interests different than expected of contemporary women, for not getting pregnant, during menopause or if their husbands wanted to take up with a younger woman and didn't want to look bad.

Me:
I first must wonder what would happen to me if people had such low tolerances for unusual behavior.  I can be in public without anyone knowing that something is abnormal.  I also sometimes obviously have problems.  Socially I am often out of sync.  There are skills I just don't have and there are things that are very hard for me because I don't think rapidly enough or in a normal sequence.  (Or I think too fast and that often shows).  I often repeat things to myself and sometimes wind up muttering to myself, either my list or trying to remember what I was remembering.  I dress very casually and look somewhat unkempt.  I tell myself it is because I need to lose weight and don't have a lot of clothing options because things are packed in the storage unit out of reach but the truth is that I don't care and being overweight from meds and not exercising because of depression has just made me want to hide my body even more.  Then there is my limp and ankle brace.  It all comes together to say "not quite normal".

 My admissions are easier than most people who have to go to the ER. This could happen to me but so far I've avoided it. My hospital has a 10 bed mood disorder unit and I have spent each stay there.  There is always a specific reason, either a med change that can't be done safely outside or I have become a danger to myself in a way that can't be safely managed without 24 hour care.  I have an easier admission process because my psychiatrist is an attending so she simply calls the head of the unit, asks him to take me for whatever reason, he says yes and I go to the admission desk, sign away my rights on special green-edged forms and am taken upstairs. Those green forms are voluntary commitment papers that say I know I will be admitted to a locked unit for treatment.  I state that if I ask to be discharged that they may keep me for an additional period of time (3 days?1 day?) to allow them to procure court orders if desired and I give permission for involuntary medication and physical restraints if I would become out of control.  That is drastically different from "you've been acting oddly so here's your lifetime sentence".  I always find it strange that I sign those forms and then am left alone to wait for several minutes for someone to come take me to the psych unit.

Nellie was not given any choices from the time she was observed being "odd".  I have always been given the choice to admit myself.  There was once when I was newly diagnosed and saw a new psychiatrist who insisted I should be admitted and when I refused pulled out the forms to involuntarily admit me while threatening me with all the ways that was worse.  I yelled at her (not smart I now admit) until I got out enough terminology for her to know that I was going to fight the admission and that I would win.  I did learn that day that the term "pink slipping" used for involuntary admissions is based on a pink form.  There was also a time in 2011 that I started hallucinating and told Drs. Brain and Mind. I was sent to the non-psych ER because Dr. Brain thought it was neurological (lithium toxicity).  I was promptly screened by a psychiatric nurse and placed in a psychiatric ER room (it had a stretcher and table that was hard to move and nothing else; they even removed an IV pole and the sink was outside the door.  It had a little window covered by a strip of leather outside that they peeked into every few minutes.  It was very safe and quiet which was nice.) I knew that I would be transferred to the psychiatric hospital if it wasn't and in that case if I'd refused admission I probably would have been pink-slipped.  However I was ready to admit myself anywhere that made the hallucinations stop, and it wasn't an issue anyway because as Dr. Brain expected I was very lithium toxic and after 2 liters of fluid the hallucinations slowed and after about 5 liters they were gone.  That is another great difference; every admission I've had has ruled out physical reasons for my issues. Nellie's doctors did not care.

<b>Orientation</b>

Nellie Bly:  There wasn't one.  Everything that happened her first day was one surprise after another.  She never knew what to expect and aside from meals there were few routines to her day.

Me:  Every time I'm admitted they review the unit with me.  It's goofy because it's hard to forget since it is so small, but they do.  I'm shown where the snacks are, where to find the list of supplemental foods that can be added to meal trays, where the computer is, which remote operates the TV, where the Wii is and how to get the disk for it, where both conference rooms are, where the laundry is and the shower room.  They review when I'm allowed to make and receive phone calls, where meals and groups are and when.  They find my roommate and introduce her.  Much of this is provided in writing as well.

<b>Environment</b>
Nellie Bly:  It was filthy.  Patients were made to do some cleaning but there was no emphasis on having a well-cared for space.  The nurses did not do anything but control their inmates and often were abusive.  There wasn't anything like a housekeeping staff.  It was very loud and not relaxing.

Me:  It is very clean.  A housekeeper spends at least half the if not all day on the unit.  Trash bags are actually brown paper bags so liquids are messy and this is managed.  Floors are cleaned every other day minimum.  Clean bedding is available any time you ask for it.  The unit is designed to be as friendly as possible. The nurses station has inch thick safety plastic all over it but they decorate the inside.  Patient rooms are bland but personal items or artwork can be hung up which helps greatly.  The other 2 rooms where we spend time, the activity room/dining room and the conference room are airy and there are always posters and therapy related information posted.  One thing I had to get used to my first time was that the mood disorder unit is divided from gero-pysch by locked double doors and you hear noises from the other side.  Because I worked on dementia units for so long they are familiar noises but it is still unsettling to hear someone banging on the other side of the door and screaming. The staff respond when this happens but it is frequent.  There are overhead pages which I can find stressful because I know what the codes mean and I think too much about what is happening elsewhere. 


<b>Length of Stay</b>

Nellie Bly:  Admission was forever, for nearly everyone.  To leave did not require an improved condition, it required someone to take over responsibility for the patient.  People were committed for many things, including not speaking English, not obeying one's husband, not following the right religious practice, poverty, physical illnesses that were too draining on family, public displays of anger or other strong emotions, and many other non-psychiatric things.  Miss Bly stated that by the time she left Bellevue she was certain that no doctor knew how to determine if someone was insane.  She saw doctors frequently during her time on Blackwell's Island but none considered that she had nothing wrong with her, despite the fact that from the time she stepped onto the island she acted her normal self without fail.  This was just considered proof that she was delusional and seeing herself well when she wasn't.

Me:  6 days per week I see a psychiatrist.  The goal is to stabilize and discharge and they have some idea about discharge goals from the beginning.  This can be adjusted; my last stay on Wednesday I found out that I was to go home Friday and decided that I needed to be more explicit about my suicidal risk level and that kept me in the hospital for a little over a week longer.  The last time it was agreed that I would attend an intensive outpatient program after discharge and time was spent discussing this, although it didn't happen because a program that met my needs wasn't within driving distance.  Every day they assess my meds and adjust those.  On the unit where I go you generally are there 5-7 days.  I've ranged from 7 to 11.  The last admission they didn't talk about homegoing much until I was not so dangerous to myself and then I had to have safety plans in place before I could go.  I've been able to request to be discharged a day or two from the original plan based on when I would be seeing Dr. Mind.

The emphasis on discharge is partly for insurance as it costs something like $1700/day to be in a psych bed.  It's also because being home and living life is better for us that an insulated, sheltered life.  They are aggressive with meds so that you leave ASAP.


<b>Room</b>

Nellie Bly: 
She was locked at night in a room with a barred window and a bed with a straw mattress that was very uncomfortable.  She had only a light slip to wear and her bed was made with an oilcloth under the bottom sheet, then a top sheet and a single wool blanket that did not cover her.  There wasn't heat despite it being nearly October and she was denied requests for more clothing or another blanket.

Me:
The unit where I stay is always icy; it is an old building.  I haven't been in there in the summer but I suspect it is cold then too.  I wear layers all the time and at night after I shower I'm more cold.  However I have the blessing of as many blankets as I want as well as being able to add a sweatshirt if I desire.  I have my own clothing and the choice of what I want to wear.  All I have to do is ask to get into the linen closet and I have access to blankets and clean sheets that I can change whenever I choose.  The doors to the room close but at night when they think you are sleeping they crack the door which always wakes me up.  The bed by the door does not have a curtain and is much less private.  During my last stay I was put on line-of-sight supervision because of how suicidal I was and the curtainless bed was how that was achieved.  It was awful and I was awake all night.  The beds are hospital beds, complete with memory foam topped mattresses and electric adjustments that make it easy to make the bed into a comfortable place to sit and read.  The beds aren't extremely comfortable but I never like any mattress but my own so that's meaningless. There are 4 double rooms and two singles.  I had a single for my first stay and both of my other stays have divided time with having a roommate and being alone in a double. My last roommate was sexually inappropriate with her boyfriend and I am more anxious about roommates in future stays than anything else.

<b>Food</b>

Nellie Bly:
Like so many things the inmates of the asylum were expected to endure awful food because they were accepting charity. Meals consisted of weak tea, bread which was described as mostly hardened dough and which at least once contained a spider, weak broth, and soups made with spoiled meat.  She wrote that after 2 days of being given salted food there was no further salt and foods were flavored with vinegar or mustard, which only made it worse.

Me:
The food is not THAT bad although it is not good.  Throughout Cleveland Clinic patients choose food from a menu that is like a restaurant's.  If you make certain selections it is actually quite good.  However, psychiatric patients are not given this choice presumably in favor of keeping life simple.  Instead there are 2 main selections at each meal and then you choose vegetables, drinks, sides, etc.  In general this food is not very appetizing.  There are not many meals in the rotation so every time I've been in there I've seen 2 rotations and once 3.  Food is served with the most flimsy plastic utensils you can imagine.  That is for safety but I have joked more than once that they should have to be able to cut the food with our utensils before they can serve it.  Fortunately there is an alternatives menu which can be used for any meal.  It is mostly hamburgers, hot dogs, French fries and other more junky foods but there is also a cottage cheese and fruit plate that I usually eat at least once and sometimes twice daily.  It is usually pretty good although in December the fruit was pretty limited.  I was there for Christmas once and they served fancier foods (prime rib and I think some kind of stuffed salmon) but mostly it was regular fare with fancy names (ie, holiday cocktail equals fruit cocktail) and that was depressing.  I've had a rough time getting what I've ordered on an anything like consistent basis unless it is my cottage cheese and fruit staple.  Once I started to drink my tea (it is so cold hot beverages are a great pleasure at meals) and realized it was caffeinated.  Not only are psych patients not allowed caffeine I had not had any in 4 years and since I was already severely agitated drinking that could have made me even more so.  Since then I check everything carefully.  There are plenty of snacks around and nobody goes hungry.  Snacks usually include cereals, cookies, crackers, pudding cups, jello cups, fruit sometimes, and any beverage imaginable, although they don't have caffeinated drinks and more recently haven't had sugared sodas either.

<b>Medications</b>

Nellie Bly:  There wasn't much medicating done at Blackwells.  Nellie was forced to take a liquid medication she thought was choral hydrate once but she spit it out.  Had she not taken it orally she was told it would be injected.  She had no idea why this heavy sedative was given.

Me:  Medications are the focus of the stay for most people; the others are there for ECT (electroconvulsive shock therapy).  Meds are dispensed regularly throughout the day.  I am on thyroid replacement so I am wakened at 6:30 for my first dose of the day and nighttime meds are given at 9 pm.  Meds cannot be forced without a court order and that wouldn't happen on my unit (except for emergencies which also don't happen very often on my unit).  One thing that changed since my first stay is that there is an order to give a shot of Haldol, a powerful anti-psychotic, if someone becomes very upset or agitated.  I somewhat suspect that I had a role in this as my first stay I was not ordered anything for agitation beyond my usual meds.  One day I checked my email to find my company accepting my resignation.  It was an error but I did not know that for several hours and it took both nurses quite a long time to get me calm at all after another patient ran for help as I had a huge panic attack.  It also took a long time to find a doctor to order meds to help me calm.  It was enough that one of the nurses remembered it clearly 2 years later.  Then a day or two later I again became extremely upset and thanks to a series of odd circumstances didn't get/find help for a long time.  They had to get medication ordered again and it was again an ordeal because I was beyond reason and required both nurses attention for quite a while. (To be fair this could have been avoided if the tech had noticed that I was a mess and in bad shape and had gotten me help rather than offering to tell me a joke when he found me sobbing  with used Kleenex everywhere while the nurses were doing a discharge and I couldn't get to them without having everyone on the unit see that I was freaking out, again.)

<b>Bathing</b>

Nellie Bly:  Bathing was not frequent and this was probably for the best.  Her first night she was forced to undress in front of many other women and forced into a tub of cold water.  Another, highly symptomatic, patient roughly scrubbed her and then threw 3 bucketfuls of icy water over her head and face.  Bath water was re-used over and over until it was filthy. After this there was a daily chance to wash her face in icy water that was also re-used numerous times and then she was expected to use one of two towels shared by all the patients.  Nellie chose to use the hem of her under-dress instead.

Me:  Showers are not my favorite part of my stay.  However they are warm and private.  You get into the room by asking the nurse who unlocks the room and makes sure you have towels, washcloths and absorbent pads used as bathmats.  The water takes quite a while to get warm and has to be used at the hottest setting.  The shower itself is odd as it is designed to prevent people from having any way of hanging themselves from the shower head.  There is barely a pipe coming out of the wall at all and you can't adjust the nozzle position.  Tall people probably hate it.  The shower is designed for handicap access so there is a lot of extra space that makes it harder to really get and stay warm.  They provide soap although I always bring my own.  I always am afraid that someone will unlock and open the door, which never happens and which they guard against but it would be awful if it happened. You are allowed to shave without a staff member in the room but not directly staring at you.  I think that this is adjusted based on your suicide risk and I'm not sure I'd have been allowed my last stay without direct supervision.  I've seen people be upset by this because different nurses enforce the rule differently.  I choose not to bother. During my 2nd hospitalization I was sent to shower to try to calm myself several times a day (they suggested, not required this) and I became more comfortable.  However, it is not home.  I always choose to shower at night because I don't have worry about anyone waiting for me to be done then and I don't have to wait to get dressed before breakfast.

<b>Clothing</b>


Nellie Bly:  After the first day her own clothing was taken and she was forced to dress in ill-fitting garments that were not sufficiently warm for the temperatures in the facility.  No additional clothing was provided when the patients were cold.  They were given hats to wear when taken outside for their daily walk.

Me:  I am allowed to wear clothing from home.  They reserve the right to take shoestrings but usually just ask that you have your shoes locked up when not wearing them.  I never wear shoes from admission to discharge because I hate shoes anyway.  I wear either slippers or just socks with non-skid socks on top.  They asked that you not bring much clothing; I always have more than they'd probably prefer simply because I bring things to layer because of the cold. 

<b>How time is spent</b>

Nellie Bly:  This could be summed up in 2 words:  she sat.  All the patients were forced to sit on hard benches for 14 hours per day.  There was a piano which Nellie played once but it was severely out of tune and she found no pleasure in this.  The women had a daily walk outside where they encountered the sickest patients in the asylum, all of whom were banded together with leather straps.  Nellie seems to have spent a lot of time talking to other patients to gather their stories for her report and this did not seem to have met with disapproval.  Nellie saw a doctor daily and seemed to see other doctors at times.  However nothing she said to the doctors was believed as they attributed everything they did not like to delusions.

Me:  Psych stays are a mix of groups and down time.  There are usually 2-3 occupational therapy groups per day and other groups vary.  Twice a week is group therapy with the social worker.  I don't get along well with her and I usually hate this group because I find her smug and condescending and if I say something I can tell she doesn't like me.  Art therapy is my favorite.  As an OT I probably shouldn't say that but OT groups while wonderfully done sometimes cover ground that I've done in my own group sessions and that becomes boring.  Art therapy is really something I thought was kind of dumb before I tried it and found that I inevitably leave with new insights and often art therapy has been when the biggest things came out of my mouth unexpectedly.  Once or twice a week a health educator conducts groups about personal responsibility and coping with illness.  He is the best group leader I've ever encountered in any setting, with an ability to make every person feel like he was paying total attention to them.  He likes to tease me for some reason but the last time I saw him I had said for the first time that I was not going to be able to work.  At the end he made a point of telling me he knew what I was losing and he was sorry.  It was the kindest thing because he didn't have to remember the details of my chart or even realize that everyone but me knew that I couldn't work anymore and that I was saying this pretty much for the first time in that group.  Other groups are more educational and I usually find them boring.  Nutrition group would be fine except that I don't care about nutrition when I'm that sick and the one time I needed a nutritionist (when I started the MAOI diet) she refused to see me because she disagreed with my doctor about the required diet and restricted my foods to the point of not letting me have vegetables.   I do always wish to go outside.  It's not possible in the building where I am hospitalized and it's hard because it's a small space (163 steps to go around completely).  You can't see outside well because there is a heavy mesh inside the windows and safety glass outside that is blurry.  So light comes in but you have to work hard to see Lake Erie which is nearby or to see this beautiful church which is visible from the bedrooms.  There are 2 visiting periods each day, one after lunch and one in the evening and more on weekends.  Weekends are boring and the 3 day weekend for Christmas in 2012 was exceedingly boring, yet we played games, did crafts and read.  One weekend when I had severe agitation I had a 1:1 aide for one shift/day to give me things to do to help me sit in a chair and try to do something besides pace, and in the evening the nurse spent a few more hours with me.  They really try to keep people engaged.  I spend vast amounts of time writing.  I try to write everything that happens; my last stay filled one and a half notebooks.  Phones calls can be made or received during times not set aside for groups.  You can't dial the phone; you have to ask the receptionist to dial out for you and you are paged if a call comes for you.  Cell phones aren't allowed; neither are ereaders, iPods, etc.  There are things to keep you amused during down times:  books, a computer you have to take turns on, a Wii, DVDs, TV, games, coloring supplies (I always color despite hating it because it helps me focus), art supplies although many need supervision for use, exercise mats, and general socialization with the other patients.  That varies from great to not happening.  I always ask for and am given permission to call in for phone therapy sessions once or twice per week with Dr. Mind.  The inpatient doctor says that the staff consistently see me doing better after those so they are really great about setting me up in a conference room for the calls.


<b>Staff</b>

Nellie Bly:  The nurses were abusive.  The doctors were dismissive.  If you were in the asylum you were hopeless and could not be believed about anything.  The staff looked down on the patients and considered them "charity cases" who should not ask for anything and who did not deserve anything.  The staff were eating good fresh food while the patients were given terrible quality, spoiled, insect ridden foods.

Me:  There is almost no turnover on my unit.  The nurses have nearly all seen me through all 3 hospitalizations and know me fairly well. They are generally wonderful.  I haven't been there in 18 months but they still ask my psychiatrist about me when she is on call.  The nurses are generally very kind and I have had them do exceptional things such as staying with me for a couple hours the day I was first there and was scared and couldn't stop crying.  When I received an email that accepted my resignation from my job (an error) I had a panic attack and both nurses worked with me to calm me and help me find out what really was happening.  When I was terribly agitated, beyond description, with a movement disorder called akasthesia for days the nurses did everything they could including assigning a 1:1 aide to keep me doing crafts for an entire shift.  When we couldn't find a hook to finish pot-holders a nurse spent over an hour finding medical stuff that could be used.  Another nurse in that time got me into hot showers over and over to help me relax a little.  I did groups standing up or sitting in a desk chair so I could swivel and rock.  Everyone made a big deal the first time I made it through a group in a regular chair without leaving to pace.   A nurse about my age always takes time to talk to me and let me feel like a healthcare professional. 

Having said that there is one nurse who I strongly dislike and most patients feel the same way.  Even my psychiatrist has confirmed that but whispered conversations in the hall have proven it.  The worst thing she did to me was when I was agitated and not due for Ativan she gave me my Seroquel instead.  Seroquel is my heavy hitter for sleep and because sleep is so hard for me I've been taught that you do not fight off the drugs.  So I went to bed.  She forced me to go a group after waking me then scolded me for crying.  She got in trouble over this and doesn't like me much.  My last stay she was my nurse (max of 5 patients) for nearly every night the stay which was close to 2 weeks.  On day 10 she did not know my name. However she only seems to like people who suck up to her and I think she knows I don't like her and I find her fake and mean and that she likes to look very involved when she really likes to be involved with drama. I have seen one nurse lose her temper inappropriately but only once.  Generally they are very kind.  The most difficult thing that has ever happened with a nurse was that a nurse who didn't work on my unit normally thought that I pulled a pill out of my mouth and pocketed it.  I had not but I had to be searched, questioned and my room was thoroughly searched as opposed to the usual brief scan they do each shift to be sure nobody brought anything bad in during visiting hours.  That was humiliating but understandable and she was doing her job.  I did touch my mouth and then probably put my hand into my hoodie pocket shortly after taking the pill so I could see where she became suspicious but I wanted the Ativan to work so I wasn't about to not take it.  The moment was over quickly.

<b>Overall Experience</b>

Nellie Bly:  There isn't much good to say about her experience.  Her treatment was abusive and the so-called healthcare was abysmal.  The doctors were so biased that they couldn't see her health.  The patients were exploited, ignored, shamed, and treated with a complete lack of dignity.  Nellie did not have the fully horrific experience that most women would have had since she knew that she would be rescued.  Even so she had originally planned to spend time with the sickest patients and decided once she was there that this wasn't safe or wise.  If a completely competent adult could not navigate the system I'm not sure how someone who was not entirely lucid and in control of herself could have survived long.  I don't know the death rate for those patients but it must have been extremely high and being sent to the asylum must have been a death sentence.

Me:  I do not like the hospital.  I know every time I'm admitted that I will struggle.  I am unlikely to sleep well no matter what meds are given.  Only once were they able to keep me sleeping well.  But that's a common enough problem for me that only part is the setting.  If I have a roommate I struggle because I'm not used to sharing space and all my usual problems with not being able to cry or relax become issues. I truly dislike the one nurse and the social worker.  On the other hand they saved my life 21 months ago.  I went in there suicidal and they didn't quite realize how bad it was until I finally admitted that I had every intention to kill myself when released.  I left at least willing to try a little long and able to say what I'd know for a month but couldn't say, that I was done working no matter how much I wanted to.  Mostly I have been treated kindly.  The other patients are generally nice enough although my situation is different than most and so sometimes I don't feel like I fit in.  Overall though my experiences have been 95% positive and I am comfortable enough knowing that sometimes I'll need to be there and that it will be ok when that happens.  If I never go back I'd be thrilled but realistically I will spend time on the 6th floor periodically.

<b>The End</b>
I believe our mental health system has a very long way to go.  I think it is good to see how far we've come.  Unfortunately I don't think we have another 130 years to correct what is wrong now.  I believe if adequate care and follow-up is not available for mentally ill individuals that tragedies will continue.  These tragedies have to be stopped sometime and I honestly don't know what it will take but I do know that until a commitment is made to stop them they will continue.
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