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

Thursday, October 31, 2013


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.

Thursday, October 24, 2013


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.

Wednesday, October 23, 2013

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.


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...

Friday, October 18, 2013

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

Wednesday, October 16, 2013

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.

Saturday, October 05, 2013

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.


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.

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.


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.

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.


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.

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.


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.

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.


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.)


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.


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.


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.
Copyright 2006 www.masterofirony.blogspot.com

Friday, October 04, 2013


I need to be on my own again.  It's just been too long living here.  My mother is constantly on my case about my cat's litter smelling.  What she doesn't get is how bad the odor is from the dog.  The dog is elderly and has a condition that causes incontinence.  This is treatable but our wonderful vet retired and his wonderful associate is on maternity leave.  This leaves his idiot associate (who almost killed my elderly cat at least once and maybe twice; I won't be going there anymore with the only choice being her).  The idiot associate gave us medicine but didn't prescribe per the instructions from the pharmaceutical company and then refused to let us increase to what should be the starting dose.  Then we had to wait another 5 days for another medicine which will take 5 more days to know if we adjust the dose or not.  We're controlling it pretty well with taking her out over and over and over and giving her dry bedding every night but it's still here.  My mother knows this, she's just coping by blaming the cats.  Who admittedly don't have great smelling pee but nobody in kidney failure does and these are 2 cats used to 3 litter pans now stuck using one.  That's tough.

There's other stuff and a lot of it I need to let go because she hurt her back and the medicine they gave her caused some crazy mood swings plus she's been hurting all week.  It's not been easy.  And some of it is that I feel trapped as it becomes obvious that I'm going to be here at least a few weeks longer than we thought.  The construction went at a great pace and we thought it would be great up until we had to wait for plumbing and electric to work us in. Instead we had about a week's delay for the right siding and now over a week for windows which have to go in before any more siding can go on.  Electric is nearly done until there are actual walls and plumbing may be at about the same point.  They are insulting the walls inside but there's just not a lot they can do to make things speed along until the windows and doors come.  The windows are custom sizes which is probably making it even more slow.  And I just want to live there.

I am also just annoyed with the world sometimes.  I am a bit more mood swingy this week which is to be expected but it was nice to have a break.  I was thinking about Geraldine's medical situation tonight as she is going to go for important appointments at the children's hospital this week and next and remembered how uneasy I felt in the hospital when I met her.  It's easy to see why now looking at pictures; her color was terrible.  She looked sick.  Nobody else saw it but that medical training kicks in sometimes still.  While I was there holding her all this green stuff came out of her nose and mouth.  My sister couldn't clear it and the baby was having trouble breathing so she sent me for a nurse.  The nurse suctioned her a lot with the bulb syringe and passed it off as common after a c-section.  My sister had 2 of those with preparation both times and hadn't heard of this.  I just looked it up.  I can't find anything about this being common.  I have another theory.  We have no idea how big the tumor was at birth.  It can grow fast.  At 3 weeks it was golf ball sized.  She had 3 markers for a tumor (ie they knew something bad was going on because 3 means something is wrong and one of those was a palpable "cyst").  I have trouble believing the drs. couldn't feel it.  Further, when she was born they said she was "cold and her blood sugar was low" and whisked her away to an incubator.  But they hadn't taken her temperature or blood sugar at that time.  I think they were aware of something from the first moments when they suction the baby and do whatever they do before giving her to the parents.  Geraldine didn't go with her parents, she went with the doctors.  And while I suspect this I'm certainly not telling them or anyone because in the grand picture it doesn't matter.  I just think that a more forthright approach should be an expectation of medical staff.  I learned early in my career that it was better to tell patients the truth.  When they learned that I was going to be (sometimes brutally) honest they often came to me requesting that. 

Tomorrow I'll wake up and half of this won't matter.  At least 25% of it is probably directly related to spending a long time at Walmart, which is always overwhelming. For tonight though I just want to take my pillows and cats and sleep in my own home.  Except without doors or windows it probably wouldn't work.

Thursday, October 03, 2013

There needs to be help

There is so much going on in this country right now.  So many parts of it are heart-breaking and I don't want to talk about most of it.  Politics just aren't safe right now because people feel so strongly about so many things. 

But I do want to just note that once again someone with a history of mental health issues has died in what appears to be a senseless tragedy, a tragedy that very easily could have taken the life of her baby as well as the lives of at least 2 police officers. 

This has to be stopped.  How that happens has to be knit into the rest of this awful mess that must be solved.  But it has to happen.  Too many people are dying because of the holes in the current system.