Why me?

I don't ask that question often because the answer is "why not me?".  But today I'm overwhelmed and that is where my head is.

Last night I just couldn't get sleepy or settled.  It finally occurred to me that I'd gone through my usual med routine but without taking meds.  That was at 3:30 and I had appointments today so I took a small amount and was asleep for a few hours about 5. 

My 2nd appointment was with the ankle dr.  I got a call as I was walking in to pay at Dr. Mind's office from them.  They said Medicare had declined my last visit because worker's comp was my primary insurance.  I said "huh, I haven't worked in 3 years, that makes no sense, I'll call them and fix it."  Ha.  I called them and was given another # to call.  I called that number and was told electronically I had a 2 hour wait.  Since I'd opted out of a return call I hung up and dialed again.  This time I got a person immediately.  This is was in the middle of Target since I'd assumed I'd have a 2 hour wait.  She was rude and I wound up telling her several times to not be rude and not treat me like I was stupid.  It turns out that in March 2011 I fell on ice walking to work and sprained my right (good) ankle.  I saw the ankle dr. then and my right ankle was treated through worker's comp.  For some reason the claim wasn't closed and when they submitted the claim for this left ankle it triggered that old claim.  And there is not a lot I can do.  I can write a letter.  I can go to social security and hopefully they can help.  Or I can for Medicare to send a letter and take care of it, but the rude person didn't say that would actually happen.  So tomorrow I'll go to the social security office and try to work it out.  I didn't see the dr. today and while I'll be able to see the surgeon next week after that the billing will do the same thing and I will be stuck, unable to schedule surgery or anything else, until it is cleared up.  I only worked 5 months longer after than injury.  It was minor and now it is messing my life up.  I am sure they're going to want me to pay up front and I can't do that. 

The dr's office also really annoyed me.  I called last week to request xrays and MRI reports.  THey said I could get them when I was in today.  I offered to come in sooner or whatever they needed to make it work.  But when I mentioned that today they said I didn't give them much time, it would be difficult to get them together etc.  They did it but I was pretty upset that I bothered to call.  To them they probably feel they don't have much need to invest in me since I'm going elsewhere for surgery.  But what the office staff doesn't know if that I hardly have a choice about that.  it's a medical necessity to have surgery where they are capable of managing my MAOI without harming me.

The xrays aren't very clear.  I can see the potential fracture and based on where it pinches when I step I'd say it is there.  They are not very good quality though so it's hard to tell; it's hard to see the old fracture that is definitely there.  I can see the malalignment of the bones from the damaged ligaments.  (The dr. showed it to me before and after it's pointed out it's pretty obvious). 

It truly was a tough day.  I wanted to go somewhere with Dr. Mind.  I don't know where but I need to talk about something, I just don't know what.  We've been taking a break from hard stuff for a few sessions and I feel like we should "go" but have no idea where.  I got a migraine and have not had much success getting it to go away, even using my triptan.  I think vicodin finally got it after 2 doses of advil, the triptan and a lot of rest.  I also had a random bloody nose which made me check my blood pressure, which was fine but up for me.  I thought I may have eaten something not MAOI approved although no idea what. 

On the happy side I got home and after a 4 month absence the plumber had returned and dug a place for my septic tank which is to be here tomorrow.  It looks like there is at least some chance for moving in April if he just sticks around and finishes each of his few things.  He's been told we want another plumber b/c of his irresponsibility so he should be on good behavior.  We'll see. 

It's just been a really long, really rough day.  I'm hoping that my psych meds are going to work double duty tonight and get me some extra rest.  We'll see.  I haven't done swagbucks for 2 days now which isn't good.  Some days it just is too much but the only way they accumulate is to do them consistently.  Oh well.

Oh and in the middle of the chaos I had a message from Dr. Brain's office.  I heard the wrong message though, one waiting to be deleted that I thought was the new one and so I returned the call regarding the old message and confused both of us.  When I found the right message today it sounds like Emsam approved me for patient assistance.  That is HUGE.  It means I can afford my meds all year without selling a cat or two (and frankly 2 old cats probably don't bring much on the street :). 

Anyway, hopefully tomorrow will be better.

Where to begin?

I don't actually remember where I left off, but I'll take a wild guess without bothering to look back and say that my cat has the same kind of fatty tumor that my other cat has had for many years and which I thought it probably was from the feel of the lump.  Unless it grows it will stay put and be fine.  Thank God.  Losing the dog has been excruciatingly painful.  Losing my boy at the same time would be beyond tolerance.

In other news I will be seeing an orthopedist next week and planning ankle surgery for as soon as possible after we return from vacation in June.  I hurt my ankle yet again (I think that the unclear fracture is a fracture and that I increased it a bit when I tried to chase my niece the other day) and don't think I can really safely walk without a support on, which goes completely against my beliefs as a therapist (over-supporting a joint just makes it weaker.  But I think my ankle is as weak as it can get and that a support is going to be necessary until it is fixed.

My bipolar episode has more or less leveled off.  I'm not in a good place and my sleep is still crappy (writing this at 2:30 am and wide awake) but I'm not out of control anymore.  I don't know what Dr. Brain will want to do when I see her next.  I'm hoping we can try another Seroquel increase since the last did help.  I am on a huge dose but I know she uses higher doses than I'm on occasionally and I feel better about more of it than an addition of something I don't know.  I also know that I'm a good candidate for extreme dosing because my body tends to require huge doses of meds to respond (or tiny doses of some meds are too much). That may change when I talk to her; side effects alone may make me change my mind.

I'm backing down to seeing Dr. Mind once a week again this week I think and that's good. 

I've had time to watch just my younger niece the last 2 weeks.  Anne is hard for me to handle right now because I Don't think fast enough to keep up,  she can tell that she hurts my feelings so she uses that to hurt me when she gets in a mood (I can't laugh it off right now), and she just takes more energy than I have.  The baby, on the other hand, has a funny thing that she sleeps better for me than anyone else so watching her always involves a good long nap and she'll play happily with my only contribution being funny noises and talking to her/imitating what she "says" as she babbles.  In return she grins and laughs at me.  She is so extremely easy-going it is hard to believe she is related to her sister.  I love Anne but until Geraldine I didn't know how intense Anne was, even as an infant.  Geraldine is totally the opposite.  She just enjoys life.  She has the funniest laugh; it is rather deep and sounds more like a bubbling brook than a baby's giggle.  Hearing that laugh is a huge goal when I'm near her.  It helps me to have any time with the girls (I've had time with Anne both weeks as well but I haven't been caring for her, just playing or reading with other adults right there) and not being able to commit to a regular day of watching them this semester has really hurt.  Last semester I managed to do that because my mood was more stable.  This winter has been rough between being sick for over a month, lithium toxicity, this nasty episode that i just can't shake, the loss of the dog, the struggle with not being in my own place yet, etc. 

Not much else to say.  IT's hard to post lately because there just isn't much happening that is different from day to day.

Loss

Nearly 13 years ago my mom had a golden retriever who had lived past all reasonable expectations for a golden.  So for Christmas I gave her a ball of fluff that was half lab, half golden.  She was the goofiest dog ever and I could keep you laughing for some time if I could manage to share her exploits. But I can't right now.

The puppy bonded to me heavily in the first 2 days that we had her.  The first day she actually went around the nursing home with me.  The 2nd she was with me a lot as my mom was out of town for a while.  She always loved me and as time has passed has been in some ways more my dog than my mom's. 

18 months ago we lost her companion dog who was around the same age.  She went downhill after that.  She improved after the puppy came but never was energetic or extremely playful again.  She'd had many health problems and had numerous fatty tumors and potentially cancerous tumors everywhere, severe arthritis after having had 2 knee surgeries, etc.  We've had her on meds for months and she was really doing pretty well until the last month or so when subtle changes happened.  She started being short of breath and wanting to be in cold air all the time.  She slept more and more of the day but was agitated at night and didn't seem to get comfortable easily then.  She was supposed to go to the vet today to be checked for heart failure.

Yesterday when I got up she was confused.  I thought it would pass and let her out.  She acted pretty normally for a while.  Then a few hours later a person came to fix my cracked windshield and despite being right by the dog yard fence she didn't come down.  I checked her and knew immediately it was bad.  Blood had filled her eyeballs.  At that point it was only one and she could see some out of the other but soon she was totally blind.  I arranged a vet appointment and got my mother to head home.  By that point I knew it was very bad.  It got worse when it got ready to rain and she was too afraid to go up the 2 steps to the sun porch.  I had to lift her entire body by wrapping a towel around her.  In the sun porch she kept walking into things until I finally got her to lay down.  At this point I was sure it was the end and so I spent most of the next few hours saying good-bye.  She finally fell sound asleep and I let her do that until my mom was home.  During that time we talked on the phone and discussed the high likelihood of euthanasia and that I was pretty sure.

Loading her into the car was awful.  I picked her up with the towel again, all 80 lbs of her and got her into the back of my mom's SUV.  (Remember that I have a likely fractured/definitely sprained ankle through all this and am supposed to take it easy.  Ha.).  The vet's office brought a gurney out and we got her inside.  The vet felt that she very probably had cancer as she had some extremely abnormal white blood cells, the numerous tumors everywhere, and clinically something was wrong.  She probably also had a stroke.  Together we decided it was time.  Restoring her vision was unlikely and even if they had it wouldn't have solved the other problems. 

So she is now wrestling with her best buddy.  I can picture it and it makes me smile.  But at the same time I miss her so much.  I have lost it totally here in the last half hour because i went downstairs for more water as I do about 3 times per night and I'm so used to checking on her, giving her a pat, getting her more water and making sure I didn't trip on her.  And now there's nothing down there but water in the fridge. 

Nobody greeted me today with her traditional 3 tail thumps of approval.  I missed petting her velvety soft ears.  Nobody tried to get me to pet their belly.  It just wasn't a day that was right because she was gone and she will be gone forever.

I know that yesterday was awful for her.  She was so afraid and confused by the vision loss.  She had trouble walking because her balance was gone, again probably a stroke.  I also know I made it as good as I could.  I sat on the floor and petted her, brushed her and talked to her for hours.  I rode in the back of the car to  keep a hand on her while we drove.  We talked a lot about the other dog and how she'd see him and we'd miss her and loved her so much.  Before she died I gave her a hug and said a few last things and then I left.  My mom had a few minutes alone before the shot.  She went completely peacefully.  It was time.

But I'm just so sad.  It will never be the same without her.  I keep crying at completely random times, this email being begun because of one of them.  I just want life to not keep changing in painful ways.  And I know that's just not how life works.  Oh, but missing my girl isn't a way I was prepared for.  I knew it wouldn't be forever.  I did think it would be yesterday until I DID know and then I felt like I had compress so much into just a little time. One last cuddle.  One last pet.  One last word.  One last memory.  That just sucks.

luck of the Irish

When I was a freshman in college I was quite surprised when St. Patricks' day came and nobody really cared.  I am from an Irish background in a town where the Irish were so prevelant that Irish themes prevail and St. Patrick's day was a big day.  My college was anti-drinking to the point you could be expelled for it so green beer wasn't a thing and nobody did anything.  It was totally foreign.

It has also been a day I have remembered because it was the day my father brought a big envelope to the school in one of the kinder gestures he ever made.  It was the college acceptance letter I had been waiting for, the one for my school of choice.  6 weeks later he was telling me I wasn't going to college because I wouldn't join the military and he wouldn't pay, but it was a nice thing to do that day.  I was called to the office for a mysterious reason and that was it.  I didn't stop grinning for 2 days.

Today though I am beginning to think that the Luck o' the Irish is bypassing me this year.  Or it is the luck from the potato famine that brought my great-great-grandparents here.  Over the weekend I went outside without my ankle brace on to meet my sister and nieces.  I was carrying the baby in when I stepped on a stone and my ankle turned completely under.  It was weird because I felt the scar tissue tearing and it felt gross but was not that painful.  I put an immobilizer on it and saw the ankle dr. today.  The x-ray was inconclusive but I did tear things in there and may have broken the end of my fibula.  It wasn't possible to be sure without additional xrays that require sedation because the new fracture would be just below an old one.  Clinically he seemed to think it was fractured but the treatment is the same anyway; I just have to wear another kind of brace for a few weeks and it is on all the time but showers and exercise.  No walking without it.  Annoying but could be a lot worse. 

So this year I've had a solid month of being sick from little niece germs, lithium toxicity, a fairly nasty episode that is still fighting with me and now a potentially broken ankle.  And it's only mid-March.  At this rate I'll be in traction for all 4 extremities like in old cartoons by December.

One thing went really well today.  Dr. Mind made me angry the other day.  He said I have no hope.  He prods at things like this I think partly to make me angry because I'm trying to learn to say "I"m angry and this is why" and although right now I'm really only doing it with him I've gotten a lot better than I was 6 months ago when this started being something we were doing.  Plus right now I'm seeing him extra so that I can talk and cry as I can't cry here and so he'll push further to get tears; my not crying has been the sign I was suicidal too many times.   Anyway because I was so angry I wrote an enormous list of things that I had hoped for and that have left me not hopeless but simply floundering to find footing because most of the things I hoped for in my life haven't happened and some of those things in the last few years I haven't found a way to replace because I am so limited in what I can do when I'm mid-episode.  I'm embarrassed to volunteer anywhere knowing that I will only be able to do so in bursts and then will need months off.  Last semester babysitting gave me a sense of doing something routinely that was good but this time I haven't been able to do it and really can't handle the girls alone right now.  I can barely handle them with other people there when they get challenging, as much as I hate that.  It's so hard with Anne because she sees that I can do things sometimes and not others but she doesn't understand why.  I know it hurts her feelings and causes her to act out, which hurts my feelings and makes the whole thing harder.

So anyway, counseling was actually good because he was glad that I finally fought back and did so beyond just saying "that made me angry".  He told me once that he worries sometimes because I don't fight like I used to.  I guess some of my used to popped out in the manic, angry moments I wrote my 3 page list of what I hoped for before he ever knew me, after he knew me and what does he think I am searching for now?

He also suggested maybe I should blog.  I'll get right on that. :) (8 years into i....)

Please let Reader's Digest know how offensive they are

I am a bit of a Reader's Digest nerd.  I've been a subscriber most of the time since I was 9.  I love it.  When I am not well like now it is perfect because the articles are short enough that I can understand, yet not written for children.

But when I read the most recent edition I was so insulted and upset and I will be cancelling my subscription permanently if they do not apologize in an upcoming episode.   What did they do that is so heinous?

In the April issue Reader' Digest ran a joke on pg. 57 as follows: Three guys are fishing when an angel appears. The 1st guy says "I've suffered from back pain for years. Can you help me?" The angel touches the man's back and he feels instant relief. The 2nd guy points to his thick glasses and begs for a cure for his poor eyesight. When the angel tosses the lenses into the lake the man gains 20/20 vision. As the angel turns to the 3rd man he instantly recoils and screams "Don't touch me! I'm on disability!"

As you all know I would give anything to not be disabled and I think that most people who are disabled feel this way.  It's not like living on social security and Medicare is financially rewarding or even easy.  And I make a lot more social security than most people.  In the last 2 years disability has taken my career that I loved, my home, my sense of self and my self-esteem.  When it is portrayed as something that I do because I don't want to be better my blood boils and I think about how the magazine publishing that must not want readers.

I am asking people to tell Reader's Digest this is offensive.  You can send an email to letters@rd.com

I sincerely hope enough people react that they retract this.  It hurt me enough to nearly make me cry, something that just doesn't happen lately unless I'm with Dr. Mind.

Not quite what I expected

What with the not sleeping, not focusing well and not feeling like doing anything I've had a lot of time to kill lately.  During the Olympics I saw ice dancing for the first time and have watched more on You Tube.  Somehow a few days ago I wound up starting to watch the entire Vancouver competition.  And THAT is what made me cry.  I cried with Dr. Mind twice this week but have refused to cry elsewhere.  And I can think of quite a few other things to cry about that come far before 4 years ago Olympics, but that was the key.

So I guess next time I'm refusing to feel anything I will just pull that up and 3.5 hours later (5 days this way) tears.  Voila!

Lost

When I was in college I was in a support group for women who had been sexually abused/assaulted.  The first year we met we had a retreat at a cabin the college owned that you could rent for very little money.  It was in the middle of nowhere and hard to find without a very good map and directions.

Everyone else went out earlier together but I had to finish a project and went by myself later. When I got there it was dark and I only saw one trail.  I followed it for much longer than the 1/2 mile I was supposed to go.  It began branching off and a few times I followed those branches.  I was carrying a blanket and a backpack with some water and food and it was not freezing yet, just chilly, so I knew I would be ok until morning but it was still scary.  It was completely dark, my flashlight was not that bright and I was afraid of using up all the batteries, and I kept finding myself at the end of logging trails with heavy machinery.  For a while I tried to get to a light I could see in the distance, thinking that it was the cabin but eventually I could tell it was further away than I thought.  After a few hours of wandering I prayed for God's help to stay on the path to get out of there.  And He did.  I finally managed to stay on one trail and soon enough saw headlights.  The last pair of women from my group were arriving.  I ran to them and discovered that there was a second path 90 degrees from the one I took.  It was harder to see in the darkness and yet in minutes we were in front of a fireplace in the cabin.

I feel a lot like I did in that mess of trails right now.  Every thought pattern leads another way and I have no way of knowing what to follow because my brain is so over-loaded with paths.  I'm tired and I know that sitting down is not going to help me. I'm cold (but that's because I need a sweatshirt :).  And I need help to get out of this place.

I'm heading to Dr. Mind soon.  I really hope that I can say what I need to say and that he can help make it ok.  We'll see.  It is tricky and I also need to ask more about if he is leaving, because if he is I don't want to pursue ankle surgery but if he is staying I do want to get the process started because my ankle is getting more uncomfortable and needs the repair.  But that's not a topic he's likely to want to get into if he knows he is leaving, because I'm already not so great.  But this could last 3 months and I need more time than that to adjust.

This is a really hard path.

Too much

Last night the puppy cried because my mom wasn't home at bedtime.  I got him to sleep once and he woke back up and we were up until nearly 12:30.  (He's a year old so a puppy developmentally, not physically and he's stayed here with me MANY times without problems).  I got to sleep at 2:30 and woke to barking at 3:30 that I ignored.  Then we were up for the day at 4:35 AM.  He did let me nap some this morning but I am so very tired now.  (I also carried a lot of heavy things downstairs at my place we don't speak of).

Then I got an email with my bill for Cleveland Clinic.  For the last 2 years I've been on charity care there with my income qualifying me for 100% free services.  Every 3 months you apply and until last spring I'd hear pretty quickly that I was approved.  Last spring's application took forever to be processed and so this bill was horrifying; I suddenly owed at first glance over $3000.  Which is not money I have.  For some reason from the months assistance is approved it was only 50%.  By their online guidelines and detailed policy I still qualify at 100%.  I spent 90 minutes in 5 phone calls with people telling me different things each time and the end result is that I get to call next week and see if they have changed it to 100%.  I kept getting hung up on or once I was on hold and suddenly was sent back to the long entry menu.  I was so upset and frustrated and tired.

And then when I couldn't do any more I gave up and worked in the house that won't be mentioned and then looked again.  In actuality if they bill at the 50% level they are still not making me pay 50% of what the statement says it costs; instead I am billed 2 much smaller amounts, less than $50 per month.  Which would have been no problem if they hadn't let those pile up for a year and now will want them paid at once.  I could have paid it month by month easily.  Now I'll have to do a payment plan that could make it hard to meet my car debt only by 2015 goal.  Unless they realize their error and go back to 100% which they should as far as I can tell.  Using any criteria I can find I qualify for that.

There is also a chunk of it that is on hold.  Part is because in November I may have hit my Medicaid spenddown and I am late in getting that information back to them.  So November has huge amounts of unprocessed claims.  And then December and January are being held up because of my being late with the Medicaid thing.  They say I didn't return a phone call but I never got one.  I had one from my local caseworker that I returned but nothing from there.  Oh well.  I'm doing the best I can. 

In all if I have to pay it will be about the cost of what I have saved for upcoming expenses not covered by Medicare.  One of my meds may cost me $480/month during the donut hole period unless patient assistance makes an exception and continues to provide it.  I may not reach the donut hole this year because I have some meds already that I won't have to pay for until later in the year but $480/month depletes savings fast.  And if it goes for last year's medical bills then I won't be debt free by 2015.

Oh well.  Can't do anything until next week and if they don't fix it then I'll start a paper battle. 

But stress was what I was really not hoping for this week. 

And now the puppy wants back in.  Again.  He has been in and out at least 50 times today.  We have to lock the patio door because he can open it himself and does so happily, leaving the door wide open.  But he won't just settle into being in or out.  It's getting on my nerves heavily.  Hopefully my mom will be here in 2 more hours....

What a day

Dr. Mind was not very happy to hear my definition of crying has been "a few tears".  I knew that was coming.  He went through a whole thing about balloons with too much pressure popping and that my way of handling this means that balloon is going to pop with the consequences I think I'm avoiding.  We talked and I cried and then suddenly I was REALLY crying, the shaking, sobbing, can't talk kind of crying that I so rarely do even there.  And that was exhausting.  I don't know how to be open with my mom or family about this.  They don't get it and I hate the results of being open.  But I know he's right and I can't hide it either.

Then I came home and it was nice for a vast change in the weather and I still had a ton of energy so I did a bunch of work in my "house" that we don't talk about.  I sorted through my kitchen stuff and filled a box for Goodwill, consolidated some linens and packed up clothes to store in the basement, and then sorted boxes into "basement" and "upstairs".  Tomorrow my goal is to take all the basement stuff down there.  If I do that it will be started to look a bit like a living room.  I also have some boxes stuffed away; some in my room and a pile in a closet but those are things that are waiting for the closets to be completed.  So that felt pretty good.

I've had a rough night.  The puppy has stayed with me every week for 5 months and sometimes before that.  The last 2 weeks he has cried until I lay on my mom's bed and wait for him to sleep.  Which means I'm not relaxing myself and it doesn't work well.    I had to do this twice so far tonight because I thought he'd stay asleep if I microwaved something and I was wrong.  So I had to let him out of the crate and outside and then start all over.  Fun.  I don't know what to do about this; he can't just keep doing this every week.  It's too hard on my sleep.

I am concerned about a possible side effect from the Seroquel dose I'm on. I think I'm having bladder spasms.  Either that or I have a really odd UTI.  But bladder spasms match more closely and fit with my history of extrapyramidal reactions.  It's a little hard to know though because the reports online list side effects on the approved doses and I'm on about twice that (not quite).  It is an accepted, safe, and often used in tough cases dose but the side effects can vary from what is listed on the drug profile.  Anyway I emailed Dr. brain and I guess tomorrow will include a trip to the drugstore (3 in 3 days!) for a home UTI test.    I really hope it's a UTI because I don't want to have to reduce this dose that is helping, minimal though it my be.

And that's about it.  Eyes are tired from crying, body from unpacking, mind from thinking too fast and bladder from withheld urine.  Yippee.

Geraldine?

I got a little surprise today.  My BIL sent a video of 6 month old Geraldine in bouncy thing, bouncing and giggling whenever he told her to "hop".  It was adorable even after I saw her do it myself a lot of times last week.  Mostly it was sweet because that is who that child is:  she is sweetness and light.  Her sister is and always has been intense and the contrast in their personalities is huge.  When Geraldine cries you know something is wrong.  When Anne cried/cries you had to guess because a lot of things triggered sadness.

But it made me realize that somehow I have not yet completely finished coping with her illness.  Her surgery will be 6 months this week and she will have a follow-up sometime this month.  Those are traumatic for her and her parents and I don't think they will get easier.  Not only does each one represent another time they could hear that the tumor is back (and then they face testing to determine if it is malignant) but the exam and test are painful for the baby.  It has now been long enough that they will be more serious about the monitoring; recurrence is not usually found until at least 6 months out.

But it isn't just that.  It's that her illness was scary and I haven't really coped fully.  Because it was so rare you don't find webpages of people who have been through this.  You find statistics and medical studies.  And while they offer hope they also make you realize that  children per year are born in the US with the type and grade of tumor she had.  Nothing is known for certain about these things.  Most are found in pregnancy but the stage she had and one other stage are less commonly found on ultrasound because of the characteristics of the tumor make it easier to hide. There was no preparation. 

I feel haunted by my reaction to her the day after she was born:  I thought she was too pale and did not look healthy.  7 days after that we got the ultrasound results and the news that she needed surgery ASAP.  I had thought I was just seeing things, that because she was more fair complected than her sister I was reading things into it.  Now I know my medical antennae were on. 

But now she's pretty safe.  A recurrence should be caught quickly and that's the key.  Her surgeon is experienced with these things.  And she's growing and developing on target.  She's sitting and wants to crawl but hasn't quite figured that out yet.  She can be made content with nearly anything for long periods of time as long as she is being held for most of it.  When she was sleepy and I was singing to her softly she put her cheek right against mine and relaxed into me.  When she smiles her entire face scrunches up.  She's here, she's alive, and those two things are blessings that we might not have had.  Somehow I'm finding it hard to not think about what we might have missed.

These episodes are morbid.  I'm sure that's what is happening.  But I really want this part to end.  These things are not happening and they are over with.  Somehow I just didn't fully cope back then although I thought I did.  Surprise!

And that is bipolar disorder.

deep and dark

Throughout this episode I have cried.  But the crying has been limited to tearing up.  I cannot just cry even though I need to.  I almost did with Dr. Mind but couldn't.  I think we're going to increase my sessions for a while to help with that.  And it's not unusual for a mixed episode to do that to me; it's like the emotions are being pulled 2 different directions.  Dr. Mind is pretty good at helping me get some of it out.

What made me nearly cry last week was saying that I think I've been using a huge amount of will-power to not have episodes that amounted to much since I've been in my moms' house.  She sees this one, it's impossible not to, but she also doesn't see it all, partly because I try to hide it and partly because I stay up here a lot to avoid noise downstairs.  (Today I did read downstairs for a couple hours while I washed my sheets and I wore sound blockers to avoid TV noises.).

I think it goes further though.  I think I'm also refusing to let myself feel the way I do.  I've had minimal suicidal thinking and that's great.  But I'm noticing that I do have the thoughts and that I tamp them down instead of handling them or admitting to them.  I think that I feel like I owe it to my mom to not be that sick anymore.  Ever.  And I know I can't control it like that or it wouldn't ever happen.  I am trying to hide all that I can so that mostly she is seeing my very tired self and some mood swings.  She also has heard about some nightmares and has seen me panic when I thought that the tv was her.

When (if?) my new place is ever done I'll have a place that I can survive these times more genuinely.  I think it will still be really hard.  But living as we do right now I am not comfortable with the symptoms.  I realize that this means that 12 year after diagnosis I still haven't fully accepted it, although in my defense I think I had and then 2 years ago everything got so much worse and changed and I haven't caught up to that.

I just hope I can tell Dr. Mind.  I think he kind of knows this but isn't certain.  We'll see what the *&(* (forgive me, I've never sworn here but the time change deserves it) time change does to me but right now I think if I have the extra counseling I can make it 4 weeks to see Dr. Brain and then it will be much easier to figure out a new path.  It means 4 weeks more of not feeling fabulous but I am getting a bit of sleep most days and that helps.  Last night was a really bad one and then I finally got tired and put on relaxation music and that actually helped.  So it's hard to guess what tomorrow will be like.  Well, tomorrow itself will be likely to suck since the time change is tonight but  tomorrow as a word for the future is more in the we'll see category.

What they left out

Today there was a talk show on downstairs that I could hear but I don't really know what it was.  It was about adult children moving back in with their parents.  It was obviously very, very different than what has happened with me. And I really haven't moved in here, it just feels like it because my house has taken so long to finish.  (Don't even ask.  I am not talking about it anymore.)

But they pointed out so many things that I glossed over in my fight to succeed in work and generally living.  They talked about how independence is important because most people meet their long-term significant others during their twenties and should be relatively settled into life in their 30s for maximum psychological health.

I hadn't thought about that so much.  I had other reasons for skipping out on the relationship/kids/etc. part of life but the truth is that I really did ignore everything in my fight to live independently and work.  I know that this doesn't mean no relationship will ever come along (no kids will) but I really missed out on my younger adult years because I was fighting to survive.  And I'm not sure that I'd seen how much I was fighting and leaving normal things out.  I always attributed all of this just to not caring because of my abusive past.  I was ignoring something else.

(This more coherent posting brought to you by Amerge, my migraine medication which knocked me out totally last night and gave me a night of sleep finally.  Too bad I can't take it daily).

Bane of my existence

My brother married a woman who is capable of triggering mood symptoms in me faster than anything but caffeine.  She is loud.  She knows everything.  She tells me how my treatments should be, based on her expertise as a former adolescent psych unit clerk.  She is bossy.  She hurt my brother badly and seemingly out of nowhere.  They separated 3 years ago and it was hard to see my brother sad and hurting but it was good to be able to tolerate family functions without drugs.  (Seriously she requires extra klonopin to be around her for any time at all).

And now they are reconciling.  Which is good for my brother who is very happy but I am having trouble with it.  I don't want her to hurt him again.  I don't want to be as stressed about family gatherings as I used to be.  I don't want the nieces to have another aunt.  (That's pure selfishness but I want Aunt to be like me.  She is not).  And she's back just in time to join our beach trip in May.

What every episode needs.....another reason for nightmares.

Patience gone

No matter how manic I am and how little sleep I've had in a given time period there come days when my body physically crashes and I get some sleep.  After sleeping mostly in 45 minute increments the last few days I finally got a 2 hour nap with only 1 brief awakening.  Then when I went to bed I was tired.  I was sleepy when I took my meds at 8:30.  I even was laying with the lights dimmed for a while.  And then the anxiety took over and it's 11:45 and I'm again wide awake and agitated.  It feels like I could just roll over and sleep but that doesn't work.  I don't get it.

I still don't know what is happening next.  I think i"m going to wait until Monday to bug Dr. Brain again just because that way I can be positive it isn't anything to do with the girls being here.  It's not but I'll make sure.  I don't want to add another med without knowing for sure that I tried everything else.

I just want to be done with this.   But that's not how it works; this will end but it will get me again.  And again.  It seems like you should get used to it but I certainly haven't.

RE:

Sometimes a comment comes along that is easier to answer as a post,or is better to answer as a post because the points are really valid.  Today we have one of those.

Jean Grey wrote:

I don't think that most of the older, typical antipsychotics are that bad for weight gain compared with the atypicals. Clozaril is another story, it is pretty bad- but so is Seroquel. Just a thought- I wonder if Ensalm is the right drug for you- as it is very strongly dopaminergic, and you seem to respond to large doses of the antipsychotics which are dopamine antagonists. And to really play devil's advocate- if you are rapid cycling, should you be taking an antidepressant? But I know that I need antidepressants, so I am just tossing that out. But research does not support the use of antidepressants in bipolar.

First, thanks for the reassurance about weight gain.  I just don't want to go there.  Although sometimes I have had weird weight gain.  I gained a great deal on lithium really quickly (60 lbs in 4 months) and then on Depakote which is supposed to be much worse for weight gain I only gained 8 lbs in 6 months.  I gained on regular Seroquel but lost it when I changed to XR and dropped Depakote.  So who knows.

I need to be on antidepressants.  I had been on so many before diagnosis that they were stopped then and I didn't use them for years and I was continually very depressed. In fact it was when I was reading about bipolar and realizing that this is what I had and then that people with bipolar shouldn't be on ADs that I managed to get it together long enough to see the guru who diagnosed me.  The problem was that off of them I stayed mixed all the time because I was depressed every minute of every day.  So we tried again.

 I was ok on Remeron for a while then had some problem with it and changed to imipramine.  I was on it for years and it was fine except that I had to mess with the dose all the time.  Emsam works well for me because it is more dopamergic; the other antidepressants trigger mania because tweaking serotonin or norepinephrine is bad for me; it makes me manic.

You are right that my need for dopamine and my need to antagonize it contradict each other.  Perhaps it is is different receptors?  Emsam is very specific what receptors are targeted and they may be different than the anti-psychotics hit.

I think that if I asked my dr., and I probably will since now I'm curious, she'd say that this is just another one of the many ways that my body reacts to medications oddly.  I may need huge doses of anti-psychotics only because smaller ones aren't absorbed or something.  We know for sure that my body processes meds differently than most people; there are few meds that I don't need either a really high dose or a really low dose and even then it's hard to get the response we want (ie sleep from something most people find extremely sedating).  I need an MAOI because other antidepressants either cause cycling, make me very sick (Wellbutrin; I lost 15 lbs in 6 weeks back when I only weighed 120 to begin with) or require a dose range that is very tight and leaves no room for an increased dose if severe depression occurs.  I've had that horrible reaction to the progestin in the Mirena, akathesia from surgery/Reglan we think, and after my hysterectomy they gave me the first dose of morphine after waking me.  I remember a lot of people telling me to breathe and to stay awake and an ambubag on my face.  I thought it was a memory of being put under but instead it was the morphine put me back out and they had to reverse it and lower my dose a great deal.  I didn't even react normally to vaccines.  After finding out that I wasn't immune to chicken pox after having pertussis we ran titers and while I was immune to everything my immunities were on the low end of normal and one  was barely normal.  So it's probably related to those things. 

I just wish that what used to work still did.  But they don't so we do this instead.

no, no, no

So last night I cracked a Seroquel and took 1/2 of it.  The increased me from 900 mg of extended release to 900 mg of extended release plus 150 mg of immediate release.  I fell asleep quickly and while my sleep was restless I did sleep through most of the night and napped through the day.  I still was moody and very teary today but the sleep was good. 

Since the sleep wasn't perfect I increased tonight so that I had 900 mg of extended release and 300 mg of immediate (this is a HUGE overall dose and a very large dose of extended release even if I weren't doing the immediate release as well).  And that was 3 hours ago and I'm not at all sleepy.  This is not a good sign.

I was counting on this working.  I very much do not want to have to add another anti-psychotic.  I will if I have to but I hate adding unfamiliar meds and these old ones we're going to be using are unfamiliar.  I will admit my biggest concern is weight gain and while that probably shouldn't be my first concern it is.  I have been losing some weight by being careful and I really do not want to regain it, much less gain any more than that.  I'm so tired of feeling self-conscious and fat.  And my impression of these older drugs is weight gain, weight gain, weight gain.  The one I think is the first choice I don't think actually is a huge risk for weight gain but I'm not sure about that.  I also do not want to be overly sedated.  I need more than I've had lately but when a new drug is thrown in it can be hard to balance needing that drug and the side effects, particularly when they are cumulative with 4 other meds.

All I can do is hope to fall asleep soon.  If I don't I guess I call Dr. Brain tomorrow.  And that's the last thing I want. 

I am so grouchy right now....

Things you don't want to hear

I saw Dr. Brain today.  She did not say I can't go back to lithium.  However she is guiding me away from it and wants to try other drugs first. Since they are rather extreme options she REALLY doesn't want me to go back.  She says it is better to keep trying to find something to replace it if we can.  I understand and agree; I'd need to stop it eventually and since we know it's very hard it might as well be now when I have a month under my belt.  But it was one of those conversations you have and then later start thinking "WHAT???".

The ideal would be to put me on Lamictal.  However my history of having had the rash severely and in the location where it was means that I can't go near it again.

We went the conservative route and bumped my Seroquel up even further.  I'm breaking one pill to make it immediate release so that hopefully that makes me sleep.  Tonight I took half the broken pill; tomorrow I'll increase to the whole one if tonight doesn't work.  If that fails the plan was to re-try Latuda.  The problem is that I can't afford Latuda and Emsam both.  And Emsam is more vital.  She doesn't know about that problem yet.

This is where things got a little scary and very clear on where I am right now.  We talked seriously about Clozaril briefly.  Clozaril is a very effective drug that requires very serious monitoring because it can wipe out your white blood cells and kill you.  So for a long time you have blood drawn weekly, then every other week, then monthly.  She decided that this isn't ideal for me right now.  We then discussed every atypical and there aren't any left except one that interacts with Seroquel.  That leaves some older anti-psychotics.  Not truly terrible ones like Haldol or Thorazine, ones that are rarely used and I hadn't heard of them (maybe one, I think one was Prolixin and she gave the generic name but I'm not sure and I don't think that was the first choice).  But those drugs aren't pulled out lightly.

New antipsychotics are expected this year.  Undoubtedly my insurance won't cover them easily.  I chose a cheap Med D policy and couldn't figure out what made it cheap. The answer is that it doesn't have a broad formulary and since it is absolutely impossible to anticipate what meds I might go on during a given year I didn't pick up on that.  We'll see how it goes this year and maybe next year I'll discuss potential meds with her before I choose a plan and try to guess ahead a bit.  I think her hope is to get me on one of them.  Unless we can get patient assistance I'm not sure that will happen.

There are many reasons the old ones are bad.  They can cause extrapyramidal symptoms which I have a history of on meds that rarely cause that.  So that will have to monitored.  They can cause permanent problems called tardive dyskinesia (and I'm leaving you to look things up because I'm tired).  They also are more likely to cause weight gain when I'm trying hard to get some of the weight the changes in the last year have caused off and I really am opposed to gaining much more weight.  They are more sedating and require dosing during the day which is not easy for me to manage. 

So I pray the Seroquel works and if it doesn't I'll have a whole new adventure I guess.

I miss lithium.