Update

The blog will probably not go private May 1.  I still intend to do that but before I do I want to find a way to merge the MOI Med List blog with this one and right now I don't feel well enough to figure out anything.  But it will go private so watch here for updates.  Maybe the new goal should be June 1, just to keep that easy to remember?  

So a lot has changed.  I talked to Dr Brain and because I needed something immediate and I can't afford even a week of Latuda (it would be about $200 for 7 days) that's not going to work right now.  So she increased my Seroquel to 1500 mg, an incredibly high dose.  However she says I can stay on it that way for some time if I need to.  I'm also back on valium pills because she thought maybe the alcohol base for the liquid was causing problems.

So far I've gotten between 5 and 8 hours of sleep each day.  It's never been consecutive but usually I wake up for a while and then take a nap.  I'm much less sedated than I expected which is probably how strong the mania is.  

IT is working somewhat.  The better sleep is really good and really important. Dr Brain said that's the thing to worry about right now.  Tonight is a bad night and hopefully soon I'll be calm enough for my 2nd dose of valium.  Last night I didn't need the 2nd dose at all.  The voices are quieter now although my thoughts are still racing terribly.  I usually wake up feeling quite depressed and by afternoon am manic and it increases until I pass out.

I was completely off Emsam for 3 days.  I put 1/3rd of my usual dose on tonight and will wear it 12 hours then it will be off 12.  We're doing that very cautiously as I don't need added agitation but I don't need to crash into depression.

Right now I'm safe from the hospital if I keep improving.  That is very good.  I was pretty scared that was coming.  

It's still really hard.  This is the worst I've felt in a long time.  It's so hard to function at all like this.  But I am getting some sleep and am not totally knocked out so that's good.

Getting worse

I'm on more valium now and getting less sleep.  I'm more manic than I've been in years.  I'm mixed as usual really but the mania is so bad that it's all I know most of the time.  Last night I pretty much didn't sleep.  I dozed through the morning (interspersed with awake times) and then slept 2.5 or 3 hours this afternoon.  I woke up wired and am still wired at 2:30, an hour after the valium.  I actually probably wasted my chance in a way because I was too agitated and got up and cleaned a bit.  It's almost like the valium is adding to the agitation although I don't think it really is.

I'm trying to get hold of Dr Brain to see if I can try Latuda again.  I tried it a few years ago and felt it helped for a bit and then didn't.  But I was SO SICK then, just off a lithium toxicity where the hospital messed up all my meds, I was starting to come to terms with not being able to work anymore, I'd tried to go back and failed, I was suicidal, and Dr. Brain was off work and not there to bolster doses or whatever might have helped.  Latuda is a really good drug for a lot of people and certainly the safest add-on left to me.

But first I have to get to Dr. Brain. I sent an email with a fairly desperate subject line and she didn't answer.  Maybe she's off work, maybe she didn't get that far in her emails, who knows.  So now I have to call her secretary and have her tell her that I'm in bad shape.

The only way I can do Latuda is patient assistance and I'll have to have an exemption b/c I have Med D.  Usually that's not a problem as long as I send a letter explaining the cost of the drug versus my income.  But it does mean that if we agree on this it will still be a week or so before I have any.  I can't imagine another week of this but I guess that's a bridge to be crossed later.  Maybe I can buy a week's worth or something.

Overall this is just bad.  Even my mother commented that she's afraid I'll wind up in the hospital.  So am I.  Everything is upside down and horrible.  I should be seeing Dr. Mind again this week, I know I should because I honestly can't tell if my thoughts are THAT fast or if I'm hearing some voices mixed in.  I think it is voices mixed in because rapid thoughts aren't usually mean to me.  Voices are.  I forgot to call to try for tomorrow. Thursday I'm going to see my brother and that's more important.  I feel urgent about that so I'm going with that feeling.  And they are closed Friday.  So Monday it will be.  

I am perseverating on avoiding the hospital.  It's a hard place to be when manic and I don't want to add the cost onto my medical bills from my surgery, a big chunk of which is still going through the system.  Medicare is being obnoxious.  They've paid for anesthesia and PT but not the surgery that came between the two.  They've paid for casts but not the surgery that required them.  It's bizarre.

I just want to go to sleep and wake up feeling good.  Somehow I think that's unlikely.

Been a while

This blog will be going private around May 1, 2015.  Please read here or email at masterofirony@gmail.com for details.  I will post details before going private although that may be delayed due to severe episode.

Sorry I haven't been on in a while.  Things are really bad.  I'm in a full-fledged mania with so many thoughts racing through my mind that trying to get words out and to make sense is very hard.  I've not had much sleep and went 39 hours with only 1 hour of sleep one day last week. 

I am using 2/3 of a patch each day to try to decrease agitation and have liquid valium to allow precision dosing of that.  The stuff tastes terrible and so far hasn't done a thing.  Tonight I'm going to increase my dose by a tiny amount.  I got the script Monday but didn't get the med until Friday because it needs prior authorization by my insurance.  That still hasn't come through but I just paid for it because I needed it badly and it wasn't much more than I'd pay with insurance anyway.  It so far has not gotten me to sleep any earlier although it works just like the tablets were and eventually it knocks me out so that I sleep into the day and that just makes it harder to get up the next day. 

I'm really barely functioning right now and am beginning to fear that a hospital stay is in my future.  I know Dr Brain has one more med tweak to try (Depakote, a drug I loathe, but only a tiny dose she promises.....I know how that goes though.  It doesn't work at low doses so we try it and I wind up on a ton because that's what it takes to work at all.  I'm really opposed to that but there are few options).  After that I don't know what happens but it's not something good.

I hoped this was all exacerbated by my thyroid.  I had all the symptoms.  But it's fine.  Apparently complete exhaustion and hypothyroid share a lot of symptoms.  Still waiting for the rest of my bloodwork but it shouldn't show anything relevant.

I don't know how to make my head stop being so loud.  It feels like my head is stuck in a very loud barrel.  I'm not reacting normally to things.  Something actually said I'm just numb.  A commercial makes me cry.  There is no logic or even any explanation for how my mind is working now.

So that's about it.  I'm feeling pretty horrible, trying to remember I've survived this and worse before and utterly failing.  So tired I can't explain it.  And feeling like a robot who needs to take her pills so she's ready to take nasty liquid valium in a couple hours.  When it probably won't work but at least it's a try.  I hate that this stuff isn't working like it used to.  It's made agitated times so easy in the past; I took it, slept about 8 hours and was fine.  This time it seems to think it is a sleeping pill and sleeping pills do nothing but upset me.


Copyright 2006-2015 www.masterofirony.blogspot.com

Tears, toes, and Medicaid

First, I should have been more specific about my inability to cry here.  It's not my mom.  It's me.  I apparently need 30 miles between us to just cry.  I can't say that I'd cry at all when she might come over or call me but she goes to bed at 8 or 9 and I can easily cry then.  And even when it's earlier I keep my door locked because we have a lot of drug related crimes and it is safer so she isn't going to get in without my letting her in.  She respects my privacy, I just can't seem to settle completely into "this is home" mode.  I think I'm afraid of that in my own way; I think that if I get too comfortable here something will happen to my mom and I'll have to move on. That's the danger of living with an aging relative; hopefully she'll be healthy for another 30 years but she's not young anymore.  After our community just lost a young person who was so special it's hard to not think about that.  I also tend to shut down when I'm in a bad place because I get afraid if I cry I won't stop or that I'll wind up in trouble.  Dr. Mind can help fix this. 

Toes....I just broke a toe on the foot that is recovering from surgery.  I broke one pretty close to where the tendons I had repaired attach so I have to watch this one.  It was so stupid, I tripped over an ironing board I should have taken down 2 days ago and snap.  I'll tape it tomorrow; just before I did it I had put a ton of Burt's Bees foot crème on it and it is very greasy right now.

Medicaid is about to become the recipient of my mixed episode.  I think I mentioned that an address change wasn't done so all my paperwork wasn't received in time to meet the deadline for updating.  I sent everything in but too late so I started re-applying.  Last night I went to finish the application and it was gone.  Today I called my caseworker but you never actually reach them so I left a message.  In the mail I had a list of documents received like they are using those for the re-application and I may have wasted the hours I've put into getting together esoteric information like every savings account I have that has $.41 in it, the payoff amount from my house sale, my back-pay from SSDI 3 years ago, etc.  So I'm pretty annoyed.  I really hope the caseworker calls back or my annoyance is going to grow a lot.  At least this one doesn't say on her message to not call her back under any circumstances; that was the friendly greeting from my prior caseworker.  But if I'd done that work and it is lost and I have to redo for a 3rd time I'm going to loose it. That's hard to do once, much less 3 times.

Today was a little bizarre here.  We had several enormous storm systems and got 4 inches of rain in 24 hours, 1.25 inches of that within one hour.  Flash flooding was an issue (we are on a big hill so are fine but it can be a huge issue around here) and we still have more storms coming tonight.

I'm tired.  I hope that means sleep.  It would be really good if it did because I've had a patch on and changed it tonight.  I need the patch and I need sleep.  The combination of both would be marvelous.





Copyright 2006-2015 www.masterofirony.blogspot.com

Revelation

This blog will be going private May 1, 2015.  Please watch this space for details or email me at masterofirony@gmail.com and when I have organized the password I will send it out.  Don't worry if I don't respond immediately; I'll do it all at once when this is complete.

I finally realized today that it is possible part of the reason I feel like I'm on the verge of falling apart isn't just because I'm tired, it's because I've been pushing myself to keep it together the entire time I've been living here.  For almost 2 years I've kept a "public face" on most of the time.  I cry but I don't let myself cry like I am depressed.  I am letting so much build up inside and then I wonder why I feel so flat.

This is something Dr. Mind and I are going to have to work on.  It used to be that I at least cried with him but now I'm not even doing that.  And I think I need to cry.  I need to say good-bye to my professional life now that this has become a more real situation and I need to say good-bye to other things I have lost because I had to lose my career.  I need to feel sad and I'm refusing to do that.  Anxious, yes.  Hypomanic, yes.  Exhausted, yes.  But sad, that I refuse to do. 

Dr Mind and I have been talking about my need to keep people happy and not complain or push and potentially annoy someone and that I sometimes need to push a little more.  I've gotten worse at this since I moved here, I think because I find it hard to push at my mom when she financially is helping so much.  But my mom having free reign over my life isn't good and my feeling like I can't cry in my house because she is next door isn't good.  I have a list going of times I should have pushed at people lately and the biggest is Dr Brain; I didn't want to pester about getting in sooner yet I needed to be seen sooner and someone needed to acknowledge the request even if it were impossible.  I am planning to ask her how to handle this next time so that she knows it happened this time and so I do know what do in the future, but it really bothers me that she potentially didn't pay attention to an email about this when I have never asked to see her sooner in 12 years.  There have been times we've moved appointments up but that has always been based on email or phone conversations.  I've never asked just because I wasn't doing well.

I don't know.  I finally realized today that I am not only feeling bipolar I am also feeling hypothyroid.  So I sent an email to Dr Body asking for labs to be drawn.  Hopefully that will happen in the next day or two.  It would be wonderful if there is a physical reason for some of this.  My synthroid hasn't been adjusted in years so it would be a little surprising for a change to happen but anything is possible and I think when the bipolar gets going that it can have complex effects on the entire rest of the body.

Anyway, I think I'm a little tired.  We'll see how that works but I'm going to quit doing things that aren't going to help me relax, like writing.





Copyright 2006-2015 www.masterofirony.blogspot.com

What goes up.....

This blog will be going private May 1, 2015.  Watch this spot for details or email masterofirony@gmail.com and I will contact you when have things set up.  Don't worry if I don't acknowledge the email immediately; I'm saving them all for when I know what to do.  Thanks.


Last week I got a few nights of sleep.  This was related to just taking my patch off and leaving it off for several days then wearing it only every other day.  Once my levels started to go back up sleeping got a little more difficult.  I'm concerned about not getting enough anti-depressant (and questions to Dr. Brain went unanswered although partly probably because I thought Dr. Mind had emailed her as he said he was going to so I wasn't as detailed in how bad I feel as I could have been and when I tried to move my appointment up she and her secretary were off and the person filling in said she'd do.....something........but nobody followed up so I guess something wasn't much.  And I made bad decisions about not pestering.)  So everyone has had some failures here and I still have no idea how to keep my Emsam levels lower without plunging them too low and I'm completely frustrated that I've been trying to find out for 5 weeks and everyone fell through on me.  But I see Dr. Brain Monday so I just have to live a few more days and I think Dr. Mind was going to email although I have no real idea as that conversation got weird and went off on a tangent and I'm not sure he heard me say it was ok to do it.

Anyway, once I got Emsam in my system I quit sleeping again.  And so this is day 3 that I've been up all night, although I have gotten a few hours of sleep in the day so still better than 2 weeks ago.  I probably should take valium but it has been so unhelpful at anything but drugging me until I just lay there that I don't want to.  If I take enough to sleep I sleep so late that getting to sleep the next night is affected.  I have no solutions.  I have been trying to exercise more but my ankle demanded a couple of days off.

Therefore I feel awful again.  I have no idea how to manage this whole thing with people communicating or not communicating.  I need to talk to Dr. Brain about this thing with trying to get in sooner; if they'd called and said she had no time that would be one thing but no response is just confusing and kind of irresponsible since I don't think I have ever called and asked to be seen sooner in 12 years. 

Not much to say really, I'm tired and cranky and very anxious because I have to re-apply for Medicaid because someone didn't update my address last year when I called about it and so my paperwork got to me after it was due and so first I sent in all the paperwork for renewal only to get a letter that I was too late, then I filled out the wrong application and then tonight I did a lot more and saved it only to get a message that at 2 AM it shuts down and since I saved at 2 on the nose I don't know if my stuff saved.  There is absolutely no warning that you are about to be kicked off.  It's really frustrating.  The application is also frustrating because there are no comment boxes and some things are ambiguous. 

Oh well.  I've got to get calmed down.  Being angry at Medicaid never helped anything.





Copyright 2006-2015 www.masterofirony.blogspot.com

2 nights but......

I slept about 12 hours last night, maybe a little more although I was awake repeatedly until early morning.  This seems to be a theme.  I had agreed to go see Dr. Mind again today to check in since I'm alone all this week and they get anxious when my mood is bad and I don't have support.  But we'd also agreed I'd cancel if I was sleeping and I did just that.  I'm glad too since I slept about 4 hours longer than I would have if I'd gotten up.

Tonight I am not sleepy at all.  I have a feeling tonight will be a valium night.  I dislike those.  It means tomorrow will be hard and I have things to do tomorrow.  But I don't want to start the not sleeping at all cycle again so I'll do what I have to do. 

I still am surprised that this evened out even a little on its' own.  That doesn't usually happen for me.  I can't really remember a time things got that bad and then improved independently, even if for only a short time.  I've had times I've gone a long time without sleep and crashed but this didn't seem to be that exactly.  I am not great but I'm not horrible either.  I don't know.  Menopause is definitely changing my symptoms and making things easier to manage.  And I know there is an effect because every so often I still have a month that it appears that there are some more hormones operating and this month has been one of them.  In fact this led to my sad experiment.  I wanted chocolate badly but didn't want to eat it all quickly so I decided to buy some and freeze it so that I had to wait a bit to get my treat.  I got mini Reese's cups and guess what?  The middles don't freeze.  So I ate a lot more chocolate than I should have this week.  Oops.

Today is a strange day.  Last year April 4 was when we found out about my brother.  And I remember thinking so many times that I wanted to go back to April 3 when life was so much easier and I didn't have that terrible knowledge.  And now it is April 3 again, a whole year of living with this.  I thought it could never get easier but it has although it is still so hard.

Anyway, back to reading and trying to sleep.
Copyright 2006-2015 www.masterofirony.blogspot.com

One night of sleep

Last night I slept.  I have no idea why.  I didn't take valium because I had to be able to wake up when someone came to help remove the huge branch that fell from a tree yesterday, blocking the driveway.  I can't remember when I fell asleep, only that I was surprised that I felt somewhat tired and decided to try closing my eyes and then I was waking up and thinking that I'd slept a little while.  I was awake for about an hour and then slept again and took a nap this afternoon as well.  Right now I feel tired but I am not going to guess whether I'll fall asleep or not tonight until I know.  If things have fixed themselves I'll be stunned as that's never happened before but I am so thrilled to not feel sick from exhaustion that I know I can survive another night if tonight is bad. 

Tomorrow I go back to see Dr Mind, mostly just to check in and show that I'm still ok.  This is partly because I haven't been good the last few times I saw him and partly just another of the things that I have to do until people are confident that I won't do the dangerously suicidal thing again.  Because the last time was really serious and I stayed that way for so long I have a long time (if ever) before they will really trust me on that again.  It got so close to being really bad without my saying anything.  So I live with this still and I understand but it still feels kind of weird.

But anyway, I finally did sleep and if I am very fortunate my brain will decide to turn this around.  Especially since I haven't heard back about moving my appointment with Dr. Brain up.  She and her secretary were off when I called and the person covering said she'd send an email.  I have no idea what that means in terms of what Dr. Brain actually sees or is aware of.  And I hate to call again because they didn't say how long she was off and I don't want to pester her, especially if I call and she's only been back 3 hours and I'm bugging her.  Or something like that that probably wouldn't happen. 

More to come, hopefully positive.



Copyright 2006-2015 www.masterofirony.blogspot.com