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

Friday, September 30, 2011

You've got to be kidding me

Granted, I missed at least one daytime dose of medication. Granted, I'm stressed about a few things I haven't posted yet. But I should not be awake. If I am not sleepy in 30 minutes then I will have to take ambien. I hate ambien. (This is mainly because it only works a short time and then leaves me stranded with just about every time it has been used in that last 15 years.) I'm awake with anxiety which is weird after being about as agitated as a turnip all day. I hate this. I suppose I could take that Neurontin that I missed, it would be well within safe (and a dose I was given in the hospital I think). I think that's the plan. This is the hardest part of what I've been through; it's scary when anything seems to not work. Yet I didn't follow the exact routine of the hospital where I usually showered around 8:30-9:30; I showered at 10:15. I threw in a load of laundry about 9:45 because I knew I didn't have anything to wear tomorrow. And the computer is on when I would at most rapidly check email at this time inpatient. So I guess it's time to eliminate that variable and read, and then make a decision about meds in a bit. I solemnly do swear to not forget meds tomorrow.

This is bugging me

I may not be articulate and please forgive my spelling as the med kicks in about now, but something is running through my mind a lot. When I was admitted the resident immediately cut the zyprexa I'd been taking and cut 1/3 of my usual seroquel dose off. This was later explained as she was assuming the problem was my antipsychotics, not a med from surgery, and even my doctor was impressed when I figured out the probable cause: there are not many meds besides antipsychotics that cause akasthesia. When I finally knew what category of problem akasthesia fell under and was able to read more I saw that several nausea meds can rarely cause akasthesia. For whatever reason the clinic's chart on my tries to insist that I can't take Zofran which is not true but would have guided them from it. The other commonly used anti-nausea med makes me hallucinate. I have to request records to find out but I suspect I was given one of those meds, however when I mentioned this to my dr. he was impressed I figured this out and stated it was likely to be correct. What I am concerned about though is that both Dr. Mind and I raised the possibility of akasthesia to Dr. Brain. And while I appreciate she tried to keep me out of the hospital I am bothered that she never responded to either of us saying that until suddenly when I mentioned I couldn't stand it be away from my weighted blanket she said "that sounds like akasthesia". No kidding...But even then she left me on the additional zyprexa and my limited understanding says that I should have just stayed at my current level of Seroquel and gotten to the hospital, which did happen pretty fast. It just sounds like by adding antipsychotics (a process that I admittedly began) things may have been worsened. This is not her fault. Even not catching it is not her fault; it's rare and the typical trigger (a new antipsychotic) wasn't present. I only caught the anti-nausea med thing accidentally. I do wish she'd listened when I brought it up, or when Dr. Mind did.I wish she'd considered it at the very least. And perhaps she did and decided it wasn't likely enough to be concerned. Perhaps she left me on the additonal antipsychotic so I could be pulled rapidly with observation present. This just was Dr. Brain not acting like Dr. Brain. I also am feeling weird because when she had her secretary call to give me an appointment next week she made sure that "only 45 minutes" was emphasized. I am used to longer appointments, but it's not like I'm going to protest if she has limited time, especially with a work-in appointment. I think I said this before I was admitted but I hate it when she has the times she turns around and puts on a "I'm treating you firmly and with no chance for you to hear anything has changed in my tone", aka how people talk to irrational psych patients. Usually that only comes out when I'm refusing to accept something, anm avoiding beneficial change or something like that. But I still hate it and it's bad enough when she does it but having her secretary do it really annoys me. She's the dr. and if my sessions run long that is really her choice. And maybe she didn't have the secretary emphasize this but it certainly was emphasized. whatever. I just left a psych unit yesterday. I'm not in a good place to analyze things. More later.

No title in me

I goofed today. Badly. I got my AM really important in beating what is wrong with me pills ready. Then I must have fallen asleep since I just now found them. I also am not 100% sure I took the 4 pm dose. If this is true it's not good for beating the akasthesia but it does make me wonder how much my tired, lethargic, hungover acting self is because I am completely exhausted and need rest and not because the meds are kicking my butt (which is true, but not when I don't take them). I guess I'll find out; tomorrow I will need to be extremely careful to take them. I have had enough akasthesia to last a lifetime. Even then I am concerned. The insert says if you are having trouble with your eyes focusing to notify your dr. I've had that since I started and have joked about it and I think mentioned it to a nurse, but never a doctor. Guess it's good I'm going to see Dr. Brain Tuesday. The bad thing about that is that I'm going to need to stay up there Tuesday night. I've thought very hard about this and won't make reservations until Monday, but I think with this fatigue level and so that I can take my afternoon med after skipping my morning dose I will have a hard time not doing this unless I find myself a lot less tired in the next little bit. Important question: Is anyone beside Michal having difficulty with commenting? My blog seems to be out to get one of the sweetest people I know. It's a bit like Satan has decided Michal shall not post or something. I don't get it. Please let me know if you are having difficulty as well.


I knew akasthesia would require sedation; If you can't stop moving you need sedation, just by common sense.  They didn't have to use meds as drastic as I feared (and if there were adequate information on akasthesia available I would have understood this, but it is not common), but I am on a relatively high dose of neurontin plus Ambien PRNand another drug that treats the cause of my akasthesia. I'm sure my body will eventually adjust to neurontin as we also will wean it down, but right now is frustrating because I can't drive without skipping doses and that's not a good thing. I couldn't even pick up my kitties today so my mom is going to do it tomorrow and bring them up early in the morning because she hast plans. I feel bad, but I can't help this. I'm going nuts because i can't find my discharge papers. I think I left them at the hospital. Which is fine since they forgot to give me 2 meds so I have to go up and get those when I see Dr. Brain next week. Dr. Mind will give me a copy anyway. I have to cancel my haircut appt. again. I feel so bad doing that; I'm sure they can fill the slot, but this will be the 2nd cancellation in a row due to surgical complications (my term for disguising that meds given during surgery put me in the psych hospital). Plus I really need a haircut. Oh well, I'll make it sometime. I had to cancel/reschedule Dr. Mind too. The thing is that I'm so overly relaxed I start thinking "who cares" about everything. I'm very, very drugged. Which I needed, I just don't like it. I have all kinds of things to tell you about the last week but can't stay awake to type them, can't make sense, and will do better telling them whenever I wake up. Later.

Thursday, September 29, 2011

All done

I'm home now.  I am unfortunately so tired I can't write more, but I am home, am feeling ok except for extremely sedated much of the time, and I will write tomorrow more.  I do miss my cats, terribly; they are at the vets and I am concerned because I don't have a good way to get them tomorrow since I'm not supposed to drive when the meds are working most heavily which is all night (no problem) and the from the morning dose until very late afternoon.

So more tomorrow when I'm able to think a bit better.

Wednesday, September 28, 2011

Big news

So it appears that I'm leaving tomorrow.  He said 90% chance.  I'm ready.  This lets me go to see Dr. Mind on the way home.
That's about it for the moment.

I think it is Wednesday......

That's my sedation level right now.  I slept 10 amazing hours and am so groggy and hung over that I can barely see.
As it wears off my anxiety level is coming up, but I also just had more sleepy-causing meds.  In some ways right now my biggest problem is severe constipation.  I'm hoping for something for that soon.  And others are waiting for the   computer, as per usual, so I'm going to quit here.  Much more to come.

Tuesday, September 27, 2011

Today they increased my med and 3 hours later I could sit still.  I sat through a group when I have mainly been standing in them.  I'm sleepy and a little wobbly but I can sit still.  I never thought to appreciate such a small thing.  Right now I'm having some muscle pain from it, but not that badly.
I'm off to ask for milk of magnesia.  I will die drinking that stuff, so it was nice knowing all of you.
I slept 8 hours!!!!!! I need higher doses of the meds but I did sleep.  Which felt good.
I don't have time right now because I need to do some moving before our first group, but something good did happen.

Monday, September 26, 2011

Monday II

New meds are not working yet.  Probably need a higher dose.  The pain is better which is a big deal.  Very manic today.  funny  thing is I've walked so much without orthotics that my feet hurt and I'm going to need to go to the podiatrist for this special med they compound for me.
All my friends went home today.  We set up a way to keep in touch which is so good.  But I miss them.
That's about it.  Am on meds, that's the important thing.

new meds

I've been prescribed meds to help with this.  I'll get some this afternoon I think.  He said he thinks a few more days and I'll be done; we'll see about that.  I'm not leaving until i feel stable and I question that anything will do that so fast.  But at least something is happening. 
My friends are all discharged.  Feeling sad.  Hoping this means I'll be able to sit still so I can do something like read now that I have less to do with all the excessive playtime.
The dr was very nice, very understanding and I was blunt that I've been here 5 days with bandaid treatments.  I don't totally trust the treatment plan but it's different than my usual so that's probably why. 
I want to go home but now I'm afraid of being sent too soon before I feel stable enough.  3 days would mean only 4 days of reallly being treated and I don't want to go home and wind up with severe insomnia, etc. again.  I also don't want my moods to be so crazy; I need to not constantly be cycling.  Right now the cycling scares me.
But we'll see and they'll keep me as long as needed, I'm sure.  I'm just so frustrated that nobody did anything for 5 days when there is a standard treatment for this issue that includes treating the pain.  I have constant pain from muscle tightness and I shouldn't.
Here goes nothing....

Sunday, September 25, 2011


  • I got 6.5 hours of sleep with Ambien.  (this is good but Ambien will work only a few days for me)
  • I saw a psychiatrist and flat-out said that I feel nothing moving forward has been done and that I'm just being medicated, not treated.  He had several treatment ideas but wants my real doctor to initiate them.  He did let me know thought that there is more to this than sedating me.  Thank God.
  • Dr. Brain is going to email my doctor about my concerns.
  • I've spent much of the afternoon on crafts with the tech.  I kind of think she was assigned to keep me not pacing but it worked.  I pace for a bit occasionally but not wearing myself out and causing pain like yesterday.
  • I've seemed to hold on to some of the sedation from ambien (which is weird) but it is keeping me somewhat calmer.
  • Just have to make it another 18 hours or so for at least some answers, I hope.

Saturday, September 24, 2011

not doing well

The meds I was taking to calm me are suddenly agitating me.  I paced for 2 hours, then the nurse suggested a shower which I took and am not sitting but I'm exhausted from all that movement and I'm sore and now I can't take anything to calm me and may not be able to take some of my night meds.  I'm fidgeting, etc.  And this may go on until Monday.

Saturday news

  • We're keeping ourselves busy.  There isn't much to do around here on weekends.
  • My anxiety is breaking through the antihistamines.  I'm pacing again.
  • Antihistamine side effects are becoming an issue.
  • I did laundry.
  • No doctor today, tomorrow is oncall dr who I suspect won't do much.
  • ugh.


I slept 5.5 hours.  That feels so very good.  I finally used sound blockers to cover all other noises and then I.FELL.ASLEEP.!!! I also woke at 6 and since I'm a 4AM waker normally that seemed good although it isn't fun here since this room doesn't get opened until 8.
The same problems with treating symptoms but not the problem still exist but this is positive if nothing else because of how tired I've been.
I got a flu shot and a pneumonia shot yesterday.  The pneumonia shot HURT.  I thought it was just the injection but today it hurts.
Today I'm hoping to nap a bit.  I'm doing laundry right now and we've got some stuff planned that I'd like to do, but if I can sleep an hour I'm grabbing it.
I think I wanted to tell you all something else but things aren't sticking in my head right now very well.

Friday, September 23, 2011

Bits Two

  • I slept 4.5 hours
  • My meds are still a mess.  The covering doctor wasn't aggressive.  The real dr. won't be back until Monday.  I am not getting any treatment that I could not do (as of this increase did without permission for that matter) at home.
  • I am a bit less anxious with constant anxiety meds.
  • I only have paced some today.
  • I'm very stressed about this med thing; this is nothing to get me off the additional meds I'm on, nothing to help me get the sleep that needs to be made up so badly, and only a few hours of relief with the other meds. They say things like "that should make you sleepy".  Well, it doesn't. 
  • My dr. won't be here until Monday. He and Dr. Brain had some plan. 
  • Hoping for reassurance from Dr. Brain that we're not going to screw around forever.
  • I had an OT eval today and did OT groups.  It was fine.
  • We also did an exercise thing and are going to do it daily.
  • I'm making friends.  This time the people are so different and I really, really like them.

Bits and pieces

So that I don't post 7 times in one day I'm going to just post random things here and then there aren't 8 posts in your reader. 
  • There are 164 steps in this unit if you got into the dead end part twice.  I have walked this at least 100 times today.
  • I start to feel sleepy.  Then I get agitated and have to move again.
  • This akasthesia thing is so not fun.
  • I am incapable of describing some features of my illness to the satisfaction of the resident.
  • It is so good to be where people know what akathesia is.
  • It is not good to be made to lay in bed when you have akathesia.
  • It is also not good to have someone cut your med by 20%.  Especially when 2 hours after getting the med you slept some.
  • Did you know they serve frozen omelets in the hospital?  I know now b/c mine was ice cold.
  • I have a headache and the resident forgot to order tylenol and so we're waiting for permission for me to take tylenol.  And have been for 2 hours.
  • My sister said she loved me.  I facebook'd that I love here.  That is a miracle.

Thursday, September 22, 2011

It's going to be a long night.  But it's already 10 pm.  That's something.  Only 10 hours to breakfast!
Not a lot to say really.  Still getting adjusted.  Thus far much, much tolerable than before and that helps a lot.  Missing my cats.  If I'm still here in a week I think my mom may stick them in a room in her house, which is good but worries me because the last time we did that the one cat was completely flipped out when I came to take them home.
My sister called which was so so nice and said I love you.  I  said it back on facebook.  We don't use that phrase.  My niece is the best thing for that relationship.  (she is a genius, if I haven't said that lately.  This is because one of her best words if not the best is my name.)
More tomorrow.

Prayer emergency

So the resident took away about half my sedation.  She's now gone home and they are trying to figure out how to get me to sleep since the drugs she added are pretty useless.
This is very, very bad. I'm having a hard enough time without this.  This cut included taking away 1/3 of the Seroquel that I have been taking for YEARS.
Bad, bad, bad......
I'm here.  So far ok.  No real dr. yet but did get some meds I seriously doubt will help.  Have paced 6 miles.

Hmm, think I'm tired?

Nights are my worst time and tonight has been terrible.  Twice I've tried to turn off the light and wound up more awake than before.  So then I got hungry, really hungry, for the first time in 3 days (up to now today's intake was a miniature root beer float, some mashed potatoes, and a PBJ.  Yesterday was worse, I think a PBJ was all I ate all day long. Oh and a peach.  So I warmed up some food, came back to my bedroom and glanced over to see my pills, sitting right where I left them when I went to get water that I never got.  So I took them, because I don't want to screw my body up even more than it is, and am now praying that they treat me kindly because I have to be up and ready to go about 6:45.  My mom is going to meet me and take the cats to the vets for me, saving me saying good-bye exactly and also cutting about 45 minutes off my drive.  But I need to get there pretty early so I can see the doctor and hopefully get something to help me calm down and rest.  I just hope that wasn't too much medication too late; I would have normally cut the klonopin dose some but it is so high I'd have withdrawl and I'm coping with enough.

Thank you all for your support.  I will be able to post from inside.

There are positives to this.  One is that I knew this was coming and decided it; the last time it was a decision I made, but it was made because there was no other choice for an antidepressant.  This time I know perfectly well that there is no more treatment that is going to work outside.  If you can't sleep with as much medication as I'm taking there is nothing that is safely used without monitoring at least while starting.  Also they will be able to track what I'm doing and how my days progress which gives them more information on how to help.  For example, if I'm up all night they'll sedate me at night.  If I start getting agitated at 4 then they will start treating me at 4.

The other thing is that it sucks that I'm really sick, but at the same time it has been TWO YEARS since I have been this sick.  I used to operate just above this level 80% of the time, and the other 20% was worse nearly entirely worse.

Hopefully rainbow shifting will be fast and I'll be me again soon. And I'll sleep some....Just 2 goals for the moment.

Wednesday, September 21, 2011


I'll be admitted tomorrow morning.  Things were messed up in Cleveland so by the time I knew it was a go it was too late to take my cats to the vet for boarding.  The good news is they've got some new protocols for people in my situation.  The bad news is that I'm getting the last female bed and that means a roommate.  They will try to get me alone if it is needed as people are discharged, but for now the woman who can't stand any noise at all and who is up and agitated much of the night has to share a room.  I cried.  That made Dr.Brain use her professional voice, which I know is just her doing what she has to, but I felt awful.  I apologized and the dr. voice was gone in the return email, she knew what I was upset about.  I just feel like I'm demanding too much or something.

Anyway, I don't want to start crying b/c my mom is supposed to call me in a few minutes.  More from the other side.

Yay (and not why you think)

Still waiting for the phone to ring or email to ding.  Suspect that all my packing efforts were in vain.  I'm too anxious to nap which would really help.  Oh well.

The big news......my jeans fasten!  I haven't worn my regular pants since early to mid July and I've been trying these on every 3-4 days waiting for my belly to have fixed it's size (it was so weird, they'd fit all the way up fine but  not fasten.  So it wasn't like I'd outgrown them, just my belly was about 4 inches too far for the snap to reach.  It feels so good to not be dressed in yoga pants.  Now I will proceed to the hospital and wear nothing but until I  go home.


I'm becoming more and more aware of how badly I stink at waiting.  (Not that this is a typical weight, but still after another night of a few hours of sleep (7 or less in 2 days) this is way too much stress.

Tuesday, September 20, 2011

Waiting to Exhale

I have everything in place to go to the hospital tomorrow. Except that person who needs to accept me didn't get back to Dr.Brain yet, which means insurance hasn't been involved yet, which means I'm ready and may not be going anywhere until Thursday except the vet's since I already arranged boarding. This would be awful; I don't want to be home without my babies, but I also need to get them to the vet in the morning to make my life go according to plan either way.

I just wish I were there and started on something.  Last night I slept 3 hours.  I had a 45 minute nap.   I'm completely exhausted since I spent the afternoon on errands.

So wish it were now.....

One more answer

There's one more answer to B's question last night of why I need to be hospitalized.  That's just safety.  For one thing I'm too tired to remember things and be safe.  Another is that wildly shifting moods and fatigue are not a good combination.  People with bipolar have a 15% of death via suicide and more like 50% attempt.  That's not my situation right now but those statistics mean that keeping me safe is wise.


It just occurred to me that I'm sitting here using scissors (and trying to get back to sleep) and that in a day or so I won't be allowed to touch the very items I'm freely touching now.  It works in reverse too; you leave and feel you shouldn't be allowed to do or touch anything.


Monday, September 19, 2011

Locked Up: The compilation

Check the right side bar for something about Locked Up and that's the series I wrote back then.  I have to find some followup posts I know were written in that time as well.  But that's the story.


I forget that 2 years ago I didn't have nearly as many readers as now.  Locked up with the irreverent way I titled posts, coming soon (maybe tonight) to a sidebar near you.  It's not as negative as it sounds; I know I need to be there.  It's just that it makes a big impression when the door closes with a heavy click and you know that you can't leave.  The process I'll go through when I arrive is surreal and that led to the Locked Up title.  You go to admissions and sign papers saying you can't leave for 3 days if the psychiatrist says he wants a court order to continue treatment, that you understand you will be on locked unit until discharge, and that if you become out of control they can physically get you to the floor and sedate you.  The other thing is that this unit is a tiny, tiny space.  When you are agitated and pacing it feels like a jail cell.  That improves when you aren't agitated.

I do have to go to psych because I'm in for a psychiatric reason.  It used to be that there were units for people like me who would be given passes to walk around, but for liability reasons those are rare now.  The unit I'll be on is tiny, only 10 patients max (last time there were 6, but the first 12 hours there were 3 of us).  You have to be accepted to be there and must have severe depression or bipolar, not be psychotic at that time, etc.  It's a lot calmer there than the floor below and the ratio of care is really high.  There are nice things; a fully stocked fridge and snack area, I'll be able to email so I'll email in posts, etc.

I'm not sure what the treatment will be.  Dr. Brain will only talk to the dr. who will treat me, but he will decide what is done.  I suspect I will be given higher doses of a very strong antipsychotic for several days, or even high doses of the Zyprexa that hasn't been doing much the last few days, and then he'll help me wean back down to a safe and reasonable number of medications.  I've asked a lot of questions about this procedure because I am very confused how they are going to sedate me enough to make this work yet still have me participate in the groups.  It may be I'm allowed to sleep for a few days and gradually join in, I'm not sure.

The worst part of it is now, while I sit an wonder what is going to happen, am I allowed to have my nook or do I need to buy books, etc

Otherwise I'm making to do lists, etc.  Tomorrow will be busy.

Manic anyone? (Also, Locked Up part II to start soon)

Last night I got less than 5 hours of sleep.  It's been weeks since I got a normal number of hours of real, solid, deep sleep.  Last night I was scrubbing carpeting at 1:30 AM because I couldn't stand a stain anymore.

Today I got up, paid billls, got ready, went to the post office and bank, drove to the mall and spent 2 hours getting some clothes etc I'll need in the hospital. Stupidly I carefully looked for pants with pockets, found some, found other pants cheaper, forgot the entire reason I was there was pockets, didn't look and now those must go back.  I had a horrible time finding flannel pajamas.  I saw Christmas trees with decorations for sale but no flannel pajamas.  Finally I spent way more than I wanted on some that I doubt will even be good quality.  Oh well. I ran into one last store and then was there forever because I couldn't remember why I was there.  Then I dropped a return off at UPS and came home, brought things inside and sorted and 3 baskets of laundry.  I changed sheets, started my comforter washing (it's a long process, I knew I should have gotten one size up),cleaned and scrubbed the kitchen, vaccummed everywhere the cats weren't, cleaned the bathroom thoroughly (forgetting to wear a mash with cleaners), put the newly washed shower curtain up (I hate doing that), sorted random socks that had gotten forgotten in a corner, tried on the things I got today that I don't  have to return and they are waiting to wash, tried working on the baby hats I've been making but can't focus well enough to do right at this point, emailed Dr.Brain a few questions I hope she can resolve with the inpatient psychiatrist, and now I will start packing and making lists of what I have to do tomorrow to be admitted hopefully Wednesday.

Please pray that my 2 requests are granted, some of this being a space thing and some of it just administrative:
1)  I cannot imagine sharing a room right now.  Please pray for a private space.  Of 10 beds up there only 2 are private.  I had one last time.  I'm praying it is medically indicated this time.
2)I want to be able to talk to Dr. Mind  on the phone for a few therapy sessions.  Dr.  Mind is so integrated into my life that I need contact with him to even really know how I am doing, and to get support when things are tough.

I am also very worried that my nook reader won't be allowed and I'd have to buy books.

The nicest thing

You all probably have heard me talk (sometimes endlessly) about my weighted blanket.  Basically it's something I knew about as an OT but only for kids.  When I worked in a psychiatric setting I used it with several adults with extreme success.  About 6 months later I decided to try it for myself and that was the first night in my life that I knew what sleep was supposed to be.  I had a pediatric one for a while without nearly enough weight (it should be 10% of your weight) so my Christmas gift that year was a grown-up sized one that fits my double bed.  I got as much weight as I could because I know how much pressure helps me, and so I've been sleeping with a 22# weight on my bed for 5 years now.  The last time I was preparing to go in the hospital I got a wrap, which is long enough to cover most of me but narrow.  It has worked for travel in a pinch but right now I really, really need weight; I'm sleeping with both blankets so I'm covered from the next down.

The place that I've used the other times didn't have any premades with a soft, warm cover.  My big blanket it a fabric called Minkee dots that is extremely soft and rubbing it also calms me.  So I went elsewhere, remembering where Julia got Gage's blanket.   They had Minkee but it was kind of expensive for a back up blanket that won't get that much use.  So I got fleece, I think 10#s.  Not the ideal weight but what is easy to carry.I emailed them very late on Friday night about shipping rates and how fast they could get it here.  Ultimately I was asking them to get it here at a cost more than the blanket. Then this afternoon I got an email to not worry about the final cost (I'd asked to speed it up today and had called in my credit card), they were covering it.

I needed that kindness badly.  Not that there isn't tons of kindness in my life, there is, but the getting ready for the hospital thing is so very hard, especially because I don't really know what they'll do and I'm very anxious about a few things that probably nobody has control over, like there are 2 private rooms out of 6 rooms.  I am terrified of having a roommate; I don't sleep well with quiet, much less someone else in the room.  And I dread the idea that the one nurse who I had so much trouble with could still be there.  I pray she has retired or moved on, but I won't know until I am there.  It's also weird to be preparing to go to the hospital when the last time I was so suicidal. This time that's one thing I'm not.  I'm very high risk because of the mood swings, but it's not what I feel.  I don't think I can present as normal, especially if you know me, but I'm not the tearful depressed person of last time.  Now I have way, way too much energy, and yet the chief complaint of "can't sleep" seems very odd to be the reason I'm going into the hospital.

Assuming I am.  I really wish in our exchange this morning I had a yes or no that I was getting referred. I'm sort of assuming Dr. Brain will call me later  but that's a guess.

Anyway I'm trying to get my room ready to vaccuum up the yarn scraps that are bugging me.  (Have to put away laundry first.  I hate folding sheets and guess what is in the big basket in front of me?)


I think we agreed to start the admission process this morning. I am not totally sure though because Dr. Brain was asking how I was taking the meds to make sure I was doing the timing right.   I told her I was doing it as instructed and  not getting much result.  I then said that I was ready to do the hospital but wanted to wait a few days until my new weighted blanket arrived, explaining that I can relax at all without one and often both on me. She then said "that sounds like akasthesia!" (a side effect that makes you feel you can't stop moving and it is actually painful to try.)  And I thought "that's why I asked 11 days ago.....".but it got lost in conversation then that wasn't really her fault.  I've had this before, there's nothing to do for the discomfort but wait it out. I don't know for sure if there is still a benefit to the psych hospital if it is akathesia but I am assuming there is.  I am just waiting to hear from her again, which could be an email or phone call tonight.  Or nothing for a few days.  Hopefully she updates me that yes, she submitted this for acceptance into the unit or that she wants to wait.  Last time it took a couple days to get approval and then another day to get insurance approval.  I'm hoping to go on Thursday or Friday.  We'll see.

More later, getting sleepy.  (yeah right)

It's up to tonight

I just agreed to go to the hospital if tonight is not successful.  I have a few things I need to do before I go and some questions to get answered, but it's time.  It's 12:20 now and I've had all that medication and am still wide awake.  Granted the 11:30 agreement to the hospital is doing me no good, but it doesn't matter.  I'll know more tomorrow (probably not until night) but I suspect I'll be admitted end of this week, beginning of next.  I'm gambling and paying a HUGE amount of shipping to have my weighted blanket here Wednesday.

I dread this but I want to be better.   I want my life back.  So a decision I never wanted to make again becomes easy.

Kind of.

Sunday, September 18, 2011

Anxiety meet boredom;Boredom meet fatigue

Despite having slept reasonably well on 5 mg of Zyprexa I still did not sleep well as defined by "I could sleep like this and go to work". So  last night was 10 mg.  It did not go well.  In 13 hours I got less than 5 hours of sleep and tended to sleep 45 minutes or so and then wake up for an hour or 2.  So I woke  up exhausted.  I wanted to be there for my mom's birthday which I thought was at dinner time but was really at lunch.  I didn't feel like driving so she came and got me and brought me back, and there was a whole thing with her male friend getting to her house not when he was expected so instead of doing things for me that were promised she rushed off and totally forgot.  I saw my niece for only a few minutes but she was cranky because it was nap time.  In all, shouldn't have gone down but good to leave the house for a while.  I am  starting to feel trapped here because I'm always too medicated to want to do anything.  Right now I would like to go strangle a neighbor who is letting a child ride a dirtbike (which is VERY loud) in circles in their yard which connects to mine.  They don't have much area, so the noise is bad.  I need my soundblockers but am too tired to get them.  Regardless those things have all added up to an extra anxiety pill.

I am continuing with the prepare for hospitalization, be happy if it doesn't happen thing.  I've asked Dr. Brain some questions, mostly to do with when and what would happen and how knocking me out works with the  whole groups on demand feature.   She had told me her email wasn't working well from home and that seems to have been the case today as I've gotten no directions for med taking tonight or answers to that.

I took the Zyprexa already (B,I think it was you who called it the Z-med, it's a strongly sedating anti-psychotic that tends to be very effective but has side effects like weight gain and increased risk of diabetes).  I have always  kept it as a last resort because of the diabetes thing, although really I have gained way too much weight lately.  Too much pop and eating what I want. I keep thinking I should start working on that, but I really need to be more stable before I'm going to lose weight.  Apparently for me "strongly sedating" is more of a joke than reality.  It is taken a few hours before other meds.  I am really tired after last night so am praying that this works tonight.

Anyway, I've got to do something to block out that noise.  It's really making me crazy.  My next house with not share yards with 8 other homes.......

Saturday, September 17, 2011

Big night

There were 2 doses of Zyprexa I am allowed to try.I don't know how many days I get until the higher dose is considered a failure,but I have had it and my other meds and am waiting to get sleepy.   Dr. Brain usually refuses to support my what if habit but I did send her some practical questions because I need to know to some extent how long she'll let me try this before admitting me.  There's also some questions that I need answered to make me feel more assured, and I want to know what happens in the hospital where the whole thing is centered around participating in groups and I will be being sedated to new levels.

What I do know is responding tonight would be a very, very, very good thing.  Last night was some response which is a good sign and those 12 hours of sleep feel wonderful but we need me to sleep and feel groggy so that I stay resting for several days.  

Ooh, sleepy weird feeling.  Time for laying down I guess.  Please let this CLEARLY work.

Friday, September 16, 2011

The last option before the bad one

I talked to Dr. Brain today.   I started what will hopefully be about a 2 week pulse of Zyprexa tonight.  We're lowering the Seroquel a touch hopefully letting me feel human although I'll still be on a ton of antipsychotic.  There are some tricky parts to this, including that Seroquel is the only antipsychotic of the 4? I've taken that I did not have a major adverse reaction to.  So that means that  I'm more likely to react somehow.  We did not discuss this but have previously, that all antipsychotics require care for me.  If today's dose doesn't help then I'll go up one more time.  If that doesn't work then I'll be hospitalized. I won't be back to work for 3 weeks minimum, probably 4-6.  She would never tell me if she thought the hospital likely exactly, but the preparation means I need to wrap my brain around it.I just ordered a smaller weighted blanket.  I am using 2 right now because I want to move so badly, which tells me that sleeping with something intended to wrap around the neck isn't going to help much.  I paid exorbitant shipping fees because I have no idea how long I get before I am admitted if that happens.  I'm going to lobby for a free weekend unless Dr. Brain is the dr. on call because the weekends there are mind-numbingly boring. But we have to get me treated too so I'm trying to figure out what I need to handle early this week.  I do know that if I have to go a list that says "this is my weighted blanket.  It's the only way I sleep." "these are my tissues from home.  I get a rash from other brands", etc.And I know  to take a lot less clothes b/c there is a washer, and I'll want several  sweatshirts because I was constantly cold there.   I'll probably have to buy some pants as I have enough pairs but a couple pairs don't quite come up over my surgical belly yet.

As you can see I'm trying to plan for the worst and hope for the best.  I  just know that when it gets so bad that I can't do basic hygiene because it slips my mind, and I spend 5 minutes trying to decide if I should call or go back to schedule that filling and then it turns out that I had the appointment card in my hand, when I'm yelling at my demented cat, it's just not good.  That's part of why I've limited my writing; I didn't want to admit forgetting to brush my teeth or put on deodorant or purposefully pulling tangled, greasy hair back in a pony tail to go see Dr. Mind.  Those are not good even if it's just because I truly am tired.

I'm not going to be going to the zoo tomorrow as I hoped, unless this stuff totally doesn't work.  But I did spend the afternoon with my niece and heard her say my name and get mad when she wanted me and I walked off not knowing this and all manner of cuteness.  She loves cats and screams MRRROOOOWWWWWWWWWW so loudly and so high pitched my mom's cat decided that just a screen door and regular door weren't enough protection and took off.

I had to do something really awkward tonight.  My assistant, who finished her training about exactly when I had to go off work, has called me twice now wanting to know when I'll be back and making it clear that I'm causing financial issues for her and that she may quit.  This makes me cry.  Therefore I wrote to both supervisors expressing my concerns, telling them how precarious things are right now for me, and asking them to talk to her so she makes decisions based on what someone with authority wants and without me feeling guilty because I am sick.  I hope someone gets back to me soon.  I know she's wrong and being completely rude and unsympathetic (saying "I'm having serious surgical complications") covers a lot of territory so she definitely could have been more sensitive.  Oh well, I just turned my phone off and left a mess that I'll check in periodically.  I won't be taking her calls until I'm better.

So, there's a lot of information in one thing.  I'm getting anxious about this zyprexa; she said a few hours and then I'll get sleepy.  2.5 hours later I'm wide awake.  I have a feeling tomorrow will be the next dose.  Maybe the zoo after all????  We'll see, I get so tired so easily and it's hard to make myself rest when the cutest one year old ever wants to hug me and be read to and play with me.  She's awesome.


Dr. Mind also thinks I'm going to be off work 1-2 months more.  He says that I'm not fighting him about that tool and nail says how lousy I feel.I'm just stunned.  This is sooooooo not the plan.  Had I had any idea I would have had the abdominal surgery one week and my ankle reconstruction the next.  I could have physically managed and now I'm terrified of surgery and badly need to fix that stupid ankle sometime.

My leave of absence ends 11/8.  I don't know what happens if I exceed that date.  I don't want to ask yet.  So please pray that I'm better enough to work by 11/6/11 (clearance day).

I can't believe I'm even thinking of this.

Thursday, September 15, 2011

Hoping against a wise doctor's guess

I saw Dr.Mind today.  We spent a lot of time discussing how the unsuccessful treatment (last night I did sleep but I cried myself to sleep very late which doesn't count as actual progress) is making me as miserable as not sleeping.  At least when I was only not sleeping I could do  things. Now everything is exhausting, feels exhausting before I start, and doesn't help me move forward in gaining my life back.

Dr. Mind gave me the impression that he thinks I'm going to wind up hospitalized.  This does not come from Dr. Brain, but she refused to discuss it when I asked rather than giving multiple things between where we were and the hospital.  I so absolutely do not want to go there mainly because the noise makes me cringe, and the only thing that makes me feel calm enough to sit still is loom knitting and they won't let me do that  because  the hook is theoretically sharp (I assume).  I'd be allowed to do in the day room but I can't stand the TV there.

I gave in to no response from Dr.Brain and left a message, during which I suddenly started crying.  I hate to bug her on Fridays but I can't keep struggling like this forever.  

One thing Dr.Mind said was that he might need to go back and fill in avoiding hospitalization as a reason to keep me off work, then said with my current diagnosis they'd be wondering why I wasn't there already. Great.

Anyway, hopefully tomorrow I'll find out something.  If I do have to be admitted it won't be until the beginning of the week unless Dr. Brain happens to be on call and even then I'm not sure because of the need for prior authorization and acceptance into the unit I go to by the head psychiatrist there.

It was good to see Dr. Mind at the end of the day.  Because I am less medicated in the evening we laughed and that helped immensely.

Tomorrow I'll hopefully see my niece for a little bit and Saturday I'm going to try to go to the zoo with them even if it means that I sit on a bench somewhere.

I can't think of a good transition, so night.

One way

I finally cried myself to sleep about 3 AM after emailing Dr. Brain that I could not take feeling like this any longer and then proceeded to sleep until after 1 pm with only 1 awakening. I have no clue what this means aside from I was exhausted.  The impressive thing is that I could go back to sleep now.  This is the response we wanted.  So I have clue what this means except I feel somewhat better (need several days of sleep for this to really work) and that perhaps getting completely upset was the right thing to do?

Wednesday, September 14, 2011


One reason I've not been  writing is that I feel like everyday, every minute is about getting sleep, not messing up my sleep, or feeling bad from the meds (they make me nauseous as well as exhausted).  But I also am not giving myself credit for doing things, and small things really matter right now.  So these posts may not be exciting but they are what I need to look at and do to see I'm not worthless.

So, today I:

  • got up and dressed in clean clothes and remembered to complete all hygiene (yesterday I did not)
  • went to the ATM
  • faxed disability papers to several doctors
  • went to the dentist and got my bite plate revised so i can use with it asthma and has full face xrays taken
  • contacted work trying to find out where to find my dental insurance information
  • made a baby hat for an organization I'm donating them to and started another
  • opened and sorted packages that came in the mail.
  • deposited my disability check
  • bought a tire gauge at the local hardware
  • got ice cream (these last few include walking up a little block and back)
  • did some laundry
  • talked to my mom for a few minutes on the phone
  • took a 30 minute nap
  • made a big yarn ball (the only part of knitting I hate)
  • developed a plan for getting help from Dr. Brain
  • washed some dishes
  • microwaved supper and ate a sandwich at lunch
  • cried when I needed to
  • made this list.
So I am not doing nothing.  These posts may continue to pop up as I work on believing myself.  Somehow I've convinced myself that not being well yet means I'm bad or not trying or something.  My assistant called the other day allegedly with a question that really turned into "when you are coming back, I'm losing  $ here" and that was really unfair and let me feeling terrible.  Because right now I'd guess 3-4 weeks based on the past.

Any time to deal with laundry again.

I haven't been the best blogger lately-I haven't been the best ANYTHING lately, but I'm going to ask you for a favor anyway.

As you all know my niece is part of what my world go round.  Because of my pain level and surgery etc. I haven't been able to see her in several months, during which time she's walking and talking and I want/need to see her.  They'll be up for the weekend for my mom's birthday.  I want so badly to our local children's zoo, even if I can't make through everything being outside and watching her would be so good for me.

I keep trying to remember the meds are making me feel crappy as much as anything; you can't take this much sedation and feel good, when when it's not working all that well.  I'm trying to connect with Dr. Brain and am hoping Dr. Mind has succeeded where I haven't.  We'll see.  If not I'll start tracking her down more assertively on Friday, which is a crappy day to chase her but she said a few days on this protocol and it's been a week and since it doesn't work I want off it.

And now that I'm getting grumpy I'll go hide again.  Thanks

Tuesday, September 13, 2011

As of today

Cranky Amy noted on my last post that I am/was able to write better (more clearly, less typos).  That's a good observation; my ability to write changes wildly with mania.  Dr. Brain tells me she can tell from a few words of an  email if I am  manic. In this case unfortunately I have shifted more toward depression.

I saw Dr. Mind today and he was concerned because it's obvious I feel lousy and after a week of so much medication we would hope for me. I know Dr. Brain was hopeful that this would be on it's way to over by now.  Not happening.

After I spent nearly 2 hours staring at a wall doing nothing I realized that it's time to try something different, because this isn't working and is making me miserable  as  well.  So that email has been sent and I know Dr.  Mind was going to send one too, so I'll wait until Friday and if I haven't heard anything I'll call again.  I hate doing that because I hate making her call me back but I can't live like this.  I don't want to start crying again so I'll leave it at I'm tired of losing out on things I want to do because of being  sick. Silly me, I thought the bipolar was stable enough that if I could  just get the physical stuff over I'd be fine.  This is precisely why I hate bipolar.

More when I have more.

Monday, September 12, 2011

Bad feelings

I keep wondering why I do not want to post.  There's not a lot day-to-day to say but there are certainly relevant things to post.  But I just don't want to.  Partly it is that I am extremely tired.  The goal Thursday was to medicate me enough to have a substantial hangover effect the next day.  That didn't happen for a day or two, but I am getting  sleep now.  It's not well timed and it's not sound, but it is sleep and that is good.

What is bad is how very hopeless I feel.  I  want my life back.  I  went off work a month ago certain that I'd have surgery and be working in a few weeks.  Even this sleep thing, we hoped I would respond quickly, get off the heavy meds, and be good.  Instead I've had to add even MORE meds.  These last months have taken so much fight out of me; I'm tired of fighting.  And being able to escape to sleep would be lovely but the only way I sleep is with all the drugs and that just means I am sedated and blagh all the time.

So I haven't been writing because I don't want to admit that I feel miserable, that I am afraid of sympathy because it just makes me more aware that I'm not able to do the most basic things.I also don't want to type because I don't want to think about the hopelessness I'm feeling and that regardless of knowing why it feels like this these are not feelings I am comfortable with.

I was excited last week when I realized that for the first time in 10.5 months I am physically stable.  I did not expect during all these months of waiting for surgery that the net result of that would be heavy psychiatric symptoms.

I'm just tired, so tired I don't want to talk about it.  I have no idea how much of this fatigue is from everything my body has been through, including the insomnia and now the heavily medicated sleep.

I do see Dr. Mind tomorrow and have frequently been in touch with Dr. Brain.  I'm hoping to get to see Dr. Brain maybe next week or week after to get some kind of game plan in place.  I want to be back to work.   That's at the heart of this:  I want my life back and life is saying no, that's not the way we're proceeding this time. I'm tired of the body not cooperating.

And I am so tired.  So very, very tired.

(Lest this post seem worrisome, I am ok.  I am not giving up.  I'm just struggling and probably feeling sorry for myself.  Some is fatigue, some is anxiety, some is so many chemical changes, etc.  I'll be fine.  But I am facing more time off work than  I wanted due to "post-surgical complications" and given how hard we worked to avoid those it's ironic I found the one thing we couldn't control.  But really and truly, I'll be fine.  Sometime I'll get some non-chemical sleep and that will make a huge difference. Dr. Brain says some of my panic attack the other day and other reactions may simply be too much Seroquel; I can't back it down though until my new bottle comes because I currently can only go from 900 mg to 600 mg and that's too big of a drop.)

Anyway, that's the reason for the silence.  I just don't know what to say.

Sunday, September 11, 2011


Thanks for the comments.  I'm ok. I got a little more sleep but paid with a panic attack (maybe/probably not related) but not fun.  I am not really able to write much right now but did want to tell you I am hanging in there and at this point that is something.

Can't wait until I can write again.

Friday, September 09, 2011

Break (for a few days)

I just want you all to know that because of the severity of my insomnia, the worst and hardest treat that I've had and I KNOW insomnia.  Dr. Brain is guessing it's from anesthesia and other elements of surgery. Regardless I am on so many drugs that I couldn't walk in the night, just bounced off one thing to another to the bathroom or kitchen sink each time. When I woke it took an hour to get my eyes to more or less focus.  Because I have a lazy eye on the left my right does most of the work.  Today I just saw blurry and double.  I was able to see in the mirror my lazy eye turned  totally out; I've  never seen that before as it's not a bad case and it is corrected with my glasses.  But I just had so much medication that my muscles totally relaxed.  I can see ok now although my eyes still cross periodically.

But there is so much to write about from the last few days and I can't.   I have written when manic, not sleeping, exhausted, etc. many, many times on this blog, but right now I just can't.  It is too hard to make my eyes focus, my brain work, and write about any of this.

This is only a few day trial with the hoping being it will work and then starting weaning back to normal next week.   However the goal for today was for me to be hungover from meds.  I am not.  I'm a little tired and the eye thing happens when I start to relax too much (which is nauseating) (one of the meds I'm taking a huge amount of is a muscle relaxant when it's not doing what I take it for). I will post more about what is happening when I can, be that tonight or in a few days.  If this attempt doesn't work I don't think there are many more outpatient options but she won't tell me that.  If I am going to the hospital obviously I'll let you all know and I'd be able to post from there as well, assuming they put me on psych.  I don't even know that since  I need knocked heavily out to sleep, not to be protected from harming myself.

Anyway, there's not a faster way to lose readers than this and I want you all to stay.  The problem is that I am so incredibly tired and manic in my thinking that I can't remember things like  eating.  I can't even begin to think of how to write a post telling you about the last days, yet they were quite interesting.  And I got very, very good news.

Plus, as I just told Dr. Body, pretty much I am physically healthy except for surgical healing, for the first time in 10.5 months. I guess it's good that this mania and the things going with it waited until now.  But it's also a huge struggle and I just don't want people thinking I'm ignoring you; I will post as I can but officially I'm on break.

I'll miss you and will be back ASAP. Since I feel good in the evening it may be as soon as tonight, but I'm going to try to not blog for a few days because I don't want to re-read later and be embarrassed what my brain put out there.

The part of this I felt love

I  have a lot to tell from the past few days and I will but it's kind of hard because I am on so medication now that I'm having trouble making my lazy eye look forward and that is so mild that as long as I have glasses that are made for this I have no issues with it ever.  It's actually very hard to see; the only I had seen it was in a picture I took of my own face. Today though the muscles are so relaxed I am having a hard time focusing.

Anyway, that aside, seeing Dr. Brain in her "real" office as oppose to the satellite where I usually go for the first time, I discovered something that touched me greatly.  2 years ago after finding out she had cancer I sent her a handmade card with a note thanking her for helping me so much that I once could barely work and now was able to paint and that I have only come as far as I have in life because of her.  It was all the things I hate saying to people. Well, I'd forgotten completely until I found it on the bulletin board around her desk in a place where she sees it frequently.  That means a lot.  I know she had to gave gotten many, many such notes and things and mine was one of the ones she kept and put where she sees it frequently.

It is a weird feeling to see how much she cares and is proud of what she was done  for ME, and I'm glad she's proud of her work because he's kept me alive for 8 hours.

Anyway, more later.  My eyes are better than an hour ago but still really annoying.

You all still get to hear some big stories: the predominant one being how I don't have cancer and the doctors were "quite concerned" because someone read a CT  wrong and called my kidney stone something totally different; the result of trying to treat my insomnia;  what I'm doing to stay busy;  continuation of the wrong med story; and something else I'm sure.

Thursday, September 08, 2011

Yesterday....all my troubles seemed so close to me...

We played the correct version of that in band once and it has stuck with me for many years.

Yesterday was crazy.  The person beside me Tuesday night had a loud fight with a woman.  I called but they stopped yelling before the call was done, although pounding on the dividing door did not work. He had several people in and out being extremely loud until after 1.  Because I had accidentally taken even more Seroquel than I meant to (too tired for math apparently) I did finally fall asleep about 1:30 or so.  Which is good since I was up at 6:30 when he blared his TV.  Even that I could have lived with thanks to soundblockers but he started smoking.  Because this motel caters to people who are ill they very strongly enforce a no smoking policy.  When I started having an asthma attack I gave up and went and begged to be moved.  The man actually came up confronted the man.  First the man made it weird by making him wait about 2 minutes.  He then lied repeatedly.  The manager told me that he was moving me because the guy was creeping and as obnoxious as I said.  I felt so weird asking to move but when it comes to the lungs they win.  So that wound up meaning I got upgraded to a 2 room suite with a microweave/tv, couch, 2 tvs (not that I need those) and whirlpool tub that I can't use for a few more weeks post op.  It's been quiet and that was good since I fell asleep at 4:15 and was awake by 7. So, on 3 hours sleep I have 2 doctor appointments and Dr. Mind and a bid drive.  I'm thinking I'll be cancelling Dr. Mind.  I wish so badly that I could just stay here again but I have to get back to my cats.  My mom thought she was inviting 4 people for supper and wound up inviting 10 so she can't help.

I had my CT and felt sick the rest of the day from the contrast.  Hopefully that was random due to the huge dose and will not mean allergy to contrast.  I should get that result today.

I know I'm leaving huge things out.  I'm just so tired.  And praying Dr. Brain gets me in.

More tonight or tomorrow.  Let's face it, tonight.:)

Wednesday, September 07, 2011

I'm here

I am just so very tired and don't feel well, kind of like might be getting sick not feeling well, and I really goofed last night.  To give a brief idea 600 mg of Seroquel is my usual dose and it is a LOT.  Because of insomnia I'd gone up to 800.  I realized today that I did the math wrong and too 900 mg 2 nights in a row.  I suspect this is why I feel sick, and will be sure Dr. Brain knows tomorrow.  It's on list.  But that's not a very good mistake.

Anyway, more probably Friday where you can hear how I'm using my free time, my awesome room upgrade with whirlpool tub I can't use (boo), and whatever Dr. Brain and Dr. Mind and Dr. Pee have to say.

Please pray for Gage as he is/was hospitalized with an infection (I think?).


Tuesday, September 06, 2011

Dr Brain strikes again

I talked to Dr. Brain for a long time tonight.  She thinks the insomnia is possibly an anesthesia reaction, possibly from them messing up my meds in the hospital, possibly a reaction to the mirena, possibly mania.  Hard to know.  But she defintely doesn't like me taking so much medication, so she gave me even more for tonight.  Which is good since I only got 3 hours of sleep last night and have been moving since.  I'm actually a bit sleepy now but I don't trust that feeling anymore.

She's so great. She's going to try to see me Thursday so I don't have to come back up here yet again Saturday (I'm staying in Cleveland tonight and tomorrow for testing and my Dr. Pee appointment on Thursday).

I'm probably facing 1-2 more weeks of disability, this time for psych.  I think we have to start over again with paperwork; gotta check on that.  There's a tiny chance of fixing this by Monday but it is tiny.  Work is awesome though, just told me to get better and they'd worry about work.  Which has never happened before.

I got 14 pages of explanation of benefits today.  I haven't totalled everything but let's say insurance is good.  I have about $1500 to pay and the other approximately and then anything else done the rest of this year is free.  Needless to say I will be pushing people to do any and every test they might ever want done.  That's especially going to be true for urology, who I really want to be very agreesive and find out what is in there and why it causes problems.  Now is the time to do it.  And while this is negative sounding and unlikely to be an issue I also am glad that if this sleeping gets beyond controllable at home (ie drastic changes I can't do alone are needed) a psych stay would be free.  Any biopsy of my kidney would be free as as well any further imaging.  I don't know if my pulmonologist has any tests he's burning to do but bring them on if he does.

Anyway, I'm going to see if the sleepy I kind of feel may become real.  A night of sleep sounds so incredibly good.......

Monday, September 05, 2011

That's one way to do this

I'm struggling right now because I am not sleeping. Well, I do sleep, but not before 3-4 (usually 4) AM and then sleep is restless.  I can't remember what I've said about this, but for now I have increased my Seroquel dose from really high to 20% about really high.  When I say really high I mean Dr.Body once told me that he had never seen  someone awake and functioning on that dose.  I also have a script for valium for severe insomnia.  It used to be great because I was very, very sensitive.  Unfortunately I also built tolerance very, very quickly and the 1.25 mg dose that used to leave me tired has increased to 5 mg (the prescribed dose I could not handle before) not working and so I'm taking 7.5 mg of that. Tonight I added another Klonopin.

The thing is that outwardly you would not think I was having a mood episode.  It has taken me 2 days to come up with enough symptoms to believe it, even though behaviorally proving it is still going to be weird; I can sit still.  I can carry on a relatively smooth conversation.  I can make decisions pretty well, I think.  I also have trouble making sense when I write, cry easily, am not sleeping (this is such a big symptom for me that my protocol includes notifying Dr. Brain if I have trouble sleeping for 3 days).  I can't say the sleep is typical of a mixed episode or mania for me; usually it just goes away.  But I realized that I have never before had quite this much medication to throw at it, and also that I've never been in the early phases of surgical recovery when this hit.  I had truly hoped it would stop when I came off pain meds but if the pain meds triggered it they weren't the only cause.  I am praying hard my mirena isn't the issue.  I have read only on message boards about "here's why I hate this med" about insomnia occurring, and if there is a slight risk it's a much higher one for me since my body hates hormones, but very little of this is in my blood stream.  And while i had emotionally prepared myself for the possibility of needing to try a wya to get more hormones in my blood stream through the Nuva Ring (which I read I'm too old for) or the mini-pill I really did not prepare myself that the mirena could have this side effect.  We discussed the possibility and how easy it is to remove if needed, but I really want to make it through 6 months.  There are other mixed signs; I'm sensitive, I don't want to leave home (partially/mainly because I'm so extremely tired, I cry at the drop of a hat, I forget things (another thing that totally could be related to lack of sleep).  But I am pretty certain Dr. Mind won't see mania when looking at me because am I still, I can mostly talk normally, and I don't think the extremes are showing that much.

One of the ways that I finally had definitive proof today was that I suddenly found a horrible song stuck in my head.  I hadn't encountered it but the neighbors had a lot of kids at a cookout and one of them may have sung it (Brady Bunch song).  I call this part of mania sheer torture because those songs/sounds/phrases take over my thoughts and I hear them until I want to beat my head against a wall, but I'm fairly sure even though wouldn't help.  So today I thought that if I had to have a song/sound stuck I was replacing it with something I preferred.  I pulled up the first song I could think of and it's actually given me relief from the Brady bunch, who I never liked anyway.

Now to get the rest to GO AWAY.  I'm going to try to see Dr. Mind tomorrow but it's unlikely since he's likely to be book from today being a holiday.  Regardless I need him to get in touch with Dr.Brain and verify the mania because I need to be able to tell them yes or no about going back to work.

I can't believe I'm on the highest dose I've ever taken of Seroquel, have been long enough for it to work, taking huge doses of benzos and still this symptomatic.  This was so not the plan.  I did talk to Dr.Brain in the hospital about needing her to assess my ability to work next wek.  I don't  see it but don't want to tell them no until I'm sure.

I  hate to do this but I think I'm going  to actually leave Dr. Brain a message.  Ugh.


B. asked about pain.I guess I haven't said much about it; I'm trying to not fall into the traps of constantly watching for it or ignoring it.  I'm also trying to figure out what I'm going to live with.  So far, so  good.

I have been off all pain meds now for 3 days.  The last time I took them was because I had cramps and cramps so soon after these procedures are pretty intense.  (2 of my procedures are working against one another; the Mirena thinks it is good time to shed that lining and there is no lining because of the d&c.  Weirdest period EVER.).  I have some pain where I'd been having the bad pain but it's only sometimes and not as bad.  It feel familiar making me think I have had this lower level pain for a long time.  The good thing is that it remains tolerable and I think I'll be able to manage with it.  There are some other options if I continue with pain  that disturbs me; I can see a pain management doctor for some non-contraindicated options to handle  it. I'm hoping it just stays low level and manageable.

The biggest concern right now is that I never get cramps like that while working. After a while they cramps will go away but I  may have them a few times before that.  The cramps were just not a good thing to try to ignore while treating.

But yes, I'm a lot better and if I could just sleep life would be almost normal again.

Sunday, September 04, 2011

There went my hopes

I have, as I've  been writing,  not been sleeping at all well.  Last night I decided I didn't care how aggressive I was, I was going to do whatever it took to both sleep and to feel groggy enough that I knew I'd sleep again.  I wound up taking 20% more Seroquel (more than I have ever taken except accidentally) plus increasing my valium 25% higher than the most I'm technically prescribed.  Although that's not great I am allowed to increase that kind of thing within reason.  But it has left me the way I hoped: sleepy.  However it also means adjusting a lot.  I'm not going to get to go see my niece tomorrow because I'm probably going to be groggy again.  That just irritates me.  I also am going to have to stay in the motel twice this week;  the night before my test and the night after (with the doctor the next day).  This is because I don't want to have to drive before all that medication wears off and my test is in the morning, although late morning.  I still didn't get to sleep until 4 but at least I've been too tired to do anything all day today and I'm hoping that if I take  my pills when I usually do that  this will start an actual sleep schedule.

I just hate the consequences of doing what I know is right.  If I go see my niece and don't sleep that's just adding to the messed up sleep.  If I try to drive for my test without enough sleep I risk hurting myself or others. Still, this isn't precisely what I had  in mind.Oh well.

Look what I made

Sheer boredom has pushed me into new projects.  Thus far this is what I have made:

The top is for my niece and is bigger than it looks.  The bottom isn't the best photo but it's a newborn hat for a  friend who doesn't yet know what she's having.  I really hope they fit both babies.  Next up is a  scarf for me, I think. I'm getting bored with hats and don't want to mess with learning a new stitch quite yet.  The scarf/hat I want to make for my are 1 color and I have a feeling I'll find that a lot more boring.  My niece's hat was fun because the color changes are somewhat random.  I have no idea how but the newborn hat had variegated yarn as well and it wound up have pretty even stripes.  I guess it just worked out that way.  I semi-understand the terms  but not enough to trust myself to say anything remotely correct.

Hey, I just yawned. Maybe I'll get to sleep by 2 tonight???

Saturday, September 03, 2011


I am trying to sign into my insurance webpage to find out how much I am going to have to pay since at least some bills will be up.  My insurance refuses to let me sign on, insisting  I don't have a policy.  I have a policy.  I had a policy as recently as a few days ago when they called to check on me for 30 minutes. I have not missed a payment.  Yet somehow my policy isn't recognized.  And I can't call them to find out why until Tuesday.  I know I have insurance.   I know my surgery etc. was covered.  I assume that there is pre-approval in my place for my CT scan on Wednesday.  But I just want to SEE.

I also want to make a pom-pom.I know how.  I have made 4 now.  One was on a gadget that did not work.  One was too big.  One I fogot to tie off.  One I have no clue what I did wrong.   I have no clue.  Lack of sleep?  Medication changes since I'm on a lot more Seroquel that doesn't help me sleep?  No painkillers all day!???  Cramps?  Beats me.

Maybe it means i'mm going sleep tonight.  I did just yawn.

We'll see.


So that outburst yesterday has led to a deep, heart-to-heart with my cousin who was also a victim of my grandfather and had a horribly abusive childhood as well.  I didn't know what for a fact, but it made sense.   I think our fathers were similar.   The odd thing is that they weren't the right birth order for that to make a much sense, they were 2 and 4 and there was probably 10 years between them.  Number 3 was probably sexually abused but that's a total guess.

The thing is that I never though I'd have that conversation.  It's almost worth the stinking insomnia.  I took a lot of extra seroquel today and it has done NOTHING.  Last night valium didn't help so I didn't take it; I guess now I take valium and pray.  I have this feeling I'm going to be off work longer to get this fixed; nothing I do helps and although today I had more pain meds than I have in a while the last dose I took was nearly 12 hours ago.

I  realize I sound like I'm discussing  difficult things at bedtime but I'm not. I just don't get sleepy anymore.   Ever.  I exercised 45 minutes, I cooked a meal, I cut up a whole big watermelon, I finished my niece's nat except the pompom and I made 2 of those just not correct ones, I stayed out of the bedroom until bedtime, I've had no caffeine in 4 years, and I'm still WIDE AWAKE.   I also only slept 7 hours last night even with a ton of valium and extra seroquel so it's not like I'm sleeping all day.

This is so, so annoying.

Friday, September 02, 2011

To B/Outcomes of last night/I do not like being female

hanks for watching out for me. Yes, I can do what I can handle now, but since it appears I may be getting my period which is generally pretty painful post-op and being this early will be worse if that is truly the cause of the cramps from hell (the nurse didn't say it was overdoing and I did ask,although she said slight possibility) I won't be doing much today.  I didn't even get out of the house because these are the kind of cramps to prevent that out of fear of social horrors.  I hope they stop soon.

You're right about education. When things like this come up it hurts me because I want to just scream it out loud and I can't because it would be professionally stupid. This had a positive outcome; my cousin was very upset and not only talked to the daughter at fault extensively but also with her older daughters who have their own children about addressing this as she truly never thought her daughter, particularly THIS one, would do such a thing.

I really hope that by the end of my career, or even after I have retired, that I can work in mental health advocacy in some way.  It's a very odd thing for me to want to do because my talents lie elsewhere, but at the same time I truly believe if people my age don't speak out the kids who are starting to live with this now will be like I was 21 years ago-diagnosed with depression, not treated because teens get depressed, and never even reassessed by a doctor or psychologist until college, followed by years of being afraid to let even those who treated me and I trusted see my mania (yet I didn't recognize it as such, such that sometimes I scared myself)  and  then they are 26 and in completely wrong professions for themselves but that they love.  My life  would be much easier had I picked a job that I had some different options that I have now, although  the flexibility I have is pretty great. There are, however, better professions  than OT for someone who is bipolar and probably better specializations than geriatrics but again, I did not know because nobody had yet guessed.  Someday I want to work really hard to help take away some of that stigma, which is even more pronounced in Appalachian culture.

Until then I have to do everything the back way.

And now I need to get the heating pad going.  I can't remember for sure if I can use it on my steri-strips but I think so and they could be off now, they just are really stuck and I don't want to pull until they are much looser.  Today is the first day one has been loose at all.  If not, maybe it will melt the surgical glue and help me get rid of them.  I really want to SEE the incisicions.  All I can see in my bellybutton is that the shape has changed and at least right now I am much closer to an outie than ever before.  It's weird.  But I scratch it so I have to keep it covered so I have no idea if that's a swelling thing or a real change.

Why I am not sleeping tonight

Boy, this was a fun night.  I did my Wii fit; I've gained a lot of weight and gotten really weak with all this sickness and so I very much want to fix that.  Plus I think weak abs is partly why nothing fits.I'm not ready to change my diet yet but between all the sickness this year it's been a lot time since I've exercised much.  Then I came back to my computer and found my 2nd cousin, who is probably 18, had just posted a very not funny little thing on facebook.  It reads like this:
You're in a mental hospital , use the first six people on your list on your profile. Don't cheat!
1. Person who drove you crazy: xxxx
2. Person who signed you in: xxx
3. Your doctor:xxx
4. Person in the corner drooling on themselvesxxx
5. Your wall licking room mate: xxx
6. Person who helps break you out: xxx

I posted that this was not funny and something about the people I used to work with deserving more respect.  I then sent her  mother the following message because I think it is ultimately the parent's decision what to do with this.  While I was writing this  my cousin's finance decided to share his 18 year old wisdom about humor and that I'm just obnoxious for saying it's not funny or appropriate.  Anyway, since Gage day
I have tried to speak out.  And so this is what I just wrote:

I am coming to you to first say I'm sorry if I upset (teenager) because I just got a bit annoyed with her.  However, I want you and her to understand what I cannot post on facebook because I can't let my coworkers know because I would be treated differently. So you can share what you like with her; just PLEASE keep it confidential. I'd like her to read this all, but I think that should be your decision. I do want her to know why I am angry and why she badly hurt my feelings.  I have bipolar disorder, which you probably know.  Almost 2 years ago I had to stop all antidepressant medication because the only medication left required that I have no other one in my bloodstream because it can kill you.  We planned a taper we hoped was safe.  It was not.  And so the day came that I was treating a patient who was difficult but not that bad and I realized I was responding to her every complaint with the thought that I wanted to die.  I had to admit to the people who treat me that I had to go to the hospital earlier than planned.  My doctor had truly thought I would handle this well but had to be inpatient for safety as the new drug is kind of scary.  She guessed wrong.  I spent 9 days on a locked unit, a place that I couldn't decide to leave without a 3 day waiting period for the court to decide if I was safe.  I had to sign a paper taking away just about every right I have as an adult.  I signed another allowing them to physically manhandle me to the flooro and inject me with medication if I became out of control. I walked in a door, signed those papers, waited a minute and someone took me to the 6th floor where we were buzzed in, a nurse took my bags and searched them, not giving me things I later had to ask to be allowed to have, like my pajamas.  I had a gorgeous view of lake Erie and a church with a cross on top, except that the windows had a very thick mesh screen that kept you from seeing much.  I wasn't not allowed to dial a phone; if i wanted to make a call someone had to dial for me from the nurses' station.  I don't watch TV but if I wanted to it was with the other people on the unit.  I could use a computer but  without privacy.  I was the patient on the special unit I was on with the most severe diagnosis, and I was the one who sat in a corner and cried for 3 days.  Then on the 4th day I was the patient who more or less flipped out and cried so long they had to get special medication to sedate me.  I was the patient who had to admit that she threw a paperclip in a register to keep from using it to hurt herself, despite every drop of faith she had that God would fix this too, because it hurt so badly.  I was the patient who woke up half the unit screaming because a nightmare was so severe that I screamed until someone woke me.  I spent 7 days on 15 minute checks despite living in a space smaller than a large mobile home with nothing within reach to harm oneself anyway.  When they did checks and I was in the bathroom I'd have to yell out that I was in the bathroom.  I had to ask permission to shower, to use objects like my own shoes, headphones, who knows what.  I couldn't have drawstrings in any of my pants.  I had to shower with water that didn't come out of the showerhead because a showerhead was too dangerous. It took 10 minutes to just wash and rinse my long thick curly hair.  I had to learn to either cover the auto-off button on the sink with a papertowel or lean so  my belly kept the water running while I brushed my teeth because we couldn't have enough water easily available to drown ourselves.  We couldn't have face towels or towels at all in our rooms so when you brushed you teeth/washed your face/etc you dried with a paper towel or your shirt.  I had to throw my trash in a brown bag because I was not safe with a plastic bag.  Every day, maybe more than once a day, someone came in and went through everything I had.  I asked my mother to send me some puzzles because I ran through all I had. When the package came I was only allowed it after inspection by a nurse.  The other mail that was sent to me wasn't given to me; it got to me when I returned home.   I had someone watch me eat and then my eating was monitored because I was too depressed to eat.  I lost 6 pounds in 4 days because I was too sick to eat more than a few bites per meal and I'd already lost 12 lbs prior to admission.  I had to sit through groups that made me feel they thought I was stupid "let's fill out a worksheet to put on your refrigerator with your diagnosis, doctor's numbers, what to do if you feel unsafe at home, and ways to calm down"; I had to listen to hallmark style faith, which is not what I believe.  I wasn't allowed to use a metal spoon, fork or knife because the flimsy plastic we were given would break rather than let us hurt ourselves.  After being on and having allergic or dangerous responses to 40 medications and after a career of 9 years in healthcare including 4 years as  a psychaitric OT I had to sit and listen to a 22 year old insist that if I had a positive attitude the medication that had about a 25% chance of working for me would magically work great.  It did work, but it wasn't because I didn't fear dangerous side effects.  I still do.  I have not eaten cheese, Chinese food, anything with soy, saeuerkraut or numerous other foods in 2 years.  I have to read ingredients on everything and can't just eat things I don't know the ingredients of.  I can't have many, many medications because they could cause me to have a stroke and literally die.  My recent surgery required my doctor to put me on a special protocol that made only specific doctors allowed to touch me, doctors with specific training in keeping me safe and alive, and to be allowed to do this without going off the medication for a while and spending more time in that psych unit my doctor had to state clearly her belief that the risk of using the protocol was worth the bother and danger of error because otherwise my life was in danger because I need that medication. In the years that I've been treated for this condition I have been on nearly every medication there is.  I've lost most of the friends I had; I've been on nearly every antipsychotic there is; I've had reactions that left me drooling or for weeks sticking my tongue in and out constantly and uncontrollably.  I've had families ask administrators of my nursing home if I was on drugs because my pupils are large as a side effect of meds.  I'm a good therapist, I'm responsible about my illness beyond belief and even then there was a period we didn't think I'd be able to be working by the time I reached this age because I just nearly ran out of medications.  I'm 35.  Retirement is not something I should have discussed at all, yet it's been seriously considered. What else? All I ever wanted was to be a wife and mother.  Your mom probably remembers how much fun I had playing with (your older sister)  when she was very pregnant with (your second oldest sister).  I can't have kids because I can't be a good mother.  I had to make that decision.  And that affects whether you get married, maybe less so by my age now, but in my 20s?  It's a big thing to be in a relationship and have to bring up that you not only will sometimes be very sick but also you can't have kids.  I wanted to get a PhD.  I had general plans for when and where and what.  Illness took that away.  Simple things are affected by my illness. Every year I spend between $10000 and $12000 out of pocket because insurance thinks mental illness and the medications for it are funny too.  That alone is a reason we need to quit laughing.  I'm blessed that I manage to afford this by juggling credit and getting a monster tax refund each year, but really, think of that money.  In my 10 years of working that means at least $100,000 of my income has gone to medical expenses, often because mental illness isn't covered the same.
I also want to tell (18 year old I want to call names right now) about some other people I have known.  (Names changed) Matthew was one of the sweetest men I have ever known. Matthew also had severe schizophrenia and had killed someone when he was young and psychotic.  Matthew and I grew very close over a few year period.  He had nicknames for everyone.  Mine, funny enough, was VIRGIN MARY!!!!, said just like  that.  Another girl was little bo peep.  Every staff member had a nickname.  Matthew had nobody in his life.  He didn't interact with staff or patients much, but as I said he and I grew to love one another.  One night I had a few free minutes and we shared a coke.  During that time he was oddly coherent and serious, talking a lot about wanting to be forgiven for all the bad things in his life. We talked about God forgiving and that he was loved.  Two days later I saw him in the afternoon and he was stressed by a building move but doing fine.  Three hours later he had a heart attack at dinner and died.  He's buried in an unmarked grave somewhere and I'll guarntee you that I'm the only person who thinks of him often, and remembers him on 4/28 every year, the day he died.  Another patient always sticks in my mind as she is who I would  be without the grace of God allowing me to be born when I was. She had the same form of bipolar that I  do, but had not been around for treatments.  Her name was Jean.  Jean was either the sweetest woman around or we were physically putting her on the floor to protect others. John had a pyschotic break at age 18 and burned his home down.  He had been in the institution for 30 years.  With meds and structure you would never believe he had that history.  They tried a community placement once and he didn't eat.  Once the state had decided to place 2 women, mother and daughter, in the community because they were too high functioning.  They sealed their door with alumninum foil and starved to death.  One lady, Lee, had bipolar like me.  If she took her meds she was fine and lived in the community.  She was with us because she stopped her meds, was hospitalized, tried to escape from the hospital and fell and broke her leg.  It had been years since she'd had any problems, it just was a matter of running out of meds. 

There were girls there who were as young as you (darling cousin).  Mostly they were there because of serious brain injuries that made their behaviors dangerous to others, but really, 18 years old and instituationlized forever? One of them I remember had a 4 month old baby at home; I tried teach her basic baby care.  It didn't work. Another beat me up for walking in her room once.  She was there because she took diet pills that she reacted to and it destroyed her brain.  What if that had been (your sister who had a serious automobile accident) after her accident?  How funny would you have found that?  

You see, it's one thing to do the other name people from your lists that are going around.  They don't hurt people.  But psychiatric illness, that's not a hypothetical.  That's my life, that's many people's lives and just because you don't see it doesn't mean it's not there.  Believe me, you would not be able to guess by seeing me how ill I have been in the last 15 years.  Even when I was most ill nobody really guessed ever.  You might as well start writing about who is with you in the oncology ward, who has what characteristics of Down syndrome,  or who had an abortion or who did drugs once as a teenager or whatever. Think of (her brand new nephew with a very serious heart defect and other congenital anomalies).  Do you want his illness to ever hurt him? Nobody is going to make fun of his heart condition, yet you post things that deeply hurt me and many other people because I have an illness you can't see.  I have a big birthmark on my hand.  I was relatively fortunate growing up with that because in our small town everyone knew me and about it from birth.  But I still have been hurt many times in my life because I look different.  That is nothing compared to being made fun of because my brain doesn't work like yours.  For that matter when I was your age I had depression.  Growing up in my family that was to be expected, and that was the  age when Gram, who I idolized and lived with at least 50% of the time for most of the last 2 years of her life, died.  Nobody thought I was bipolar. Don't discount that someday it will be YOU in that psych unit, because it could be.  Nothing will prevent it if that is how God made your genes and that's His plan.  For me it was.  That's a good thing now; it's let to positive things in my life, but it also has tried to kill me, it has tried to take everything from me, it has hurt those who love me, and it has left me without many things people take for granted.   Those are all things that are hurtful to people and that often are and should be kept somewhat private, and they aren't funny.  They hurt.  Trust me, I was hurt enough that I've spent 75 minutes typing this because I want you to understand.

(My cousin, the mom), I hope this is not totally out of line.  It  is something I try to share and hopefully help people understand because if nobody speaks up about mental illness nobody ever changes anything.  I've said a lot because I want (daughter) (and other daughter) really since she thought this was funny also) to understand exactly what they are making fun of and the best way I know to do that is in the shape of a person. This is part of my life, it's not the good part.  It is however a huge part, like it or  not.

Thanks for reading all this.

I have no idea what will come from this and since it's the middle of the night I predict not much at this point. Other than I'm going to have a really hard time sleeping tonight.  I hate this.  It's just the wrong day to make fun of me.  I also hate that I can't just go off on facebook itself but I can't because half my office is on my friends and I'm not all that interested in telling them all.  Honestly it would be treated kindly by nearly everyone but it would also be seen as the real reason i've been off work etc and have missed days etc. and that's just not true.

I am so tired of a stigmatizing illness.  I get annoyed when people start saying bipolar is no different than diabetes (for some reason the option of choice) because it is. I could say on facebook that I had diabetes and nobody would think twice.  I also would never hear a joke about a diabetic having a severe insulin reaction and drooling.

I know these are kids.  But they are old enough to be engaged so they are old enough to think like grown-ups.  The boyfriend is even worse because he is lecturing me.  He is 18.  In their world he is a man and I'm a woman and therefore should shut up; in my world I'm an adult and he's a kid and he needs to treat me with a modicum of respect given that he has never talked to me or met me before.  The 2nd cousin in question I've only met once, and she was a toddler.

Oh, I am SO MAD.

Thursday, September 01, 2011

Freaking out pays off

So yesterday I was very worried about my disability.  Today it came through, and even though I had to pester some large medical institutions I wound up having an easier time with this than with any other disability claim ever.  I don't know how much of that was that this is physical and that was psych, but they were so easy to work with and so much less demanding of having crazy stuff than anyone else.  My check should have been sent today and so about Monday I'll be a whole lot less stress about money.  If I wind up needing to stay off for urological or psychiatric reasons that is also very easily managed.  So, go Cigna!

I also heard from the hospital about my complaint about being abandoned by the transporter.  They dealt with it quickly and with a bunch of apologies from all supervisors concerned which I really, really appreciate.  Hopefully that never happens to anyone again as it was awful.

I did a lot today and am going to try something new because I'm so tired:  I'm going to go ahead and take my meds and see if I can go to sleep early and just ignore the need for another pain pill.  If it doesn't work I'll deal and go back to my usual up til 2 AM thing but I want to try this.  I honestly think I could go to sleep for the night without meds after doing so much, so there's hope.  I hope there is at a least.

Good night???