Note to self

When feeling better do not take the time to google old college roommates, especially ones you know have gone out and succeeded in ways you wish you'd had a chance at and who probably forgot all about you about oh, 14 years ago since you graduated 15 years ago.  Now I'm sad.  Glad for all of them, just had my belief that not attending reunions is best for me re-affirmed.  It takes me back nearly 20 years to the day I found out that not only were my other 2 roommates closer friends than I was with them they did not want to room with me the next year. Some of it was logistics, there weren't many triples available, but mostly who wants to room with an extremely anxious, depressed, fighting treatment as hard as possible, overly stressed by her classes and work person when you could have fun?  It's hard to argue with that and they were nice enough but it was one of the first times I had to really and truly face "I'm different".  Not just the psych stuff, I wouldn't even have thought of that as a first reason (although I was not fun to be with while coping with my parents' divorce) but because our backgrounds were SO different.  Both of them were from affluent families in affluent towns.  They had planetariums at their high schools; we didn't have adequate microscopes.  They had normal regional accents; I had an Appalachian accent that they found funny.  And it can be, I just wanted to blend in a bit.  That was the year I started smushing my accent and using it only when I wanted to or I am around someone else using it in which case it pops out.  They were from major cities; I was from a town so small that we mailed something to my mother's first name, description of the road I lived on (but not it's name) and it got there on time as if it were addressed properly. 

They never rejected me for my illness although by the time it was bad we didn't see each other much. They pulled away because I wasn't from their world and never could be.  That was true with a lot of people in college but some people are able to open their world more than others. Just before we graduated I ran into one of them and they'd heard I was going to grad school and they told me of their own plans.  Both were well on their way to success in their chosen fields and through the alumni magazine I have seen them succeed.

But I need to avoid it being in my face again.  That hurt too much.  I think I'd written on here that I had decided to maintain my OT license.  It took me 20 months to decide that.  Today, about 6 days later, I got a proposed update to the Ohio OT laws that will require 250 hours working as an OT in a 5 year period to maintain licensure.  I have always been surprised this didn't exist.  Now it is going to mean that I probably won't have a license very long.  I think I'll get one renewal using the hours from my last year of working, maybe.  But after that I will either have to work 50 hours per year as a clinician or give up the license.  I won't put myself in a position of feeling I have to get those hours unless my status has changed enough that I feel I can do it without pressuring myself.  Again, in my face, and I wish it weren't.

But I can't do much about it and I need to just be glad that the Topamax is giving me some good time.  I just need to use it more wisely.

So long I can't remember

Two weeks of therapy now that I have felt so much better that I have looked it to Dr. Mind.  It's been a long time for that but even longer since I had a therapy session where I did not cry at all.  I can't even guess when that last happened.  It was a good thing.  It's weird to be relaxed in there; I'm so used to struggling through every hour and usually crying through most of it. 

At the end of a not-high-pressure session he pointed out that when I'm feeling good he doesn't have to push so hard as he had been doing.  After the monster pushing day that led to sobbing in the car for an hour and blowing my nose repeatedly into a rag I had in the car for cleaning it that was full of Armor-All I told him maybe not so hard and that I've decided Armor-All ingestion was the solution to everything.  I've had patients swear up and down that spraying WD-40 on arthritic knees helps them; perhaps my theory isn't much different.

Otherwise Anne is here visiting. She didn't want much to do with me when I got home which is odd but later wanted only me.  She tends to divide things up and likes to follow the same routine.  Usually grandma helps her with the potty, especially if she has to poop (she has constipation that is really bad).  Sometimes I'm allowed.  The first night here she always wants Annie's Macaroni and Cheese, made with butter.  I ALWAYS do her bath.  After bath we ALWAYS put on "grandma's special lotion" which is really lavendar baby lotion.  Then we ALWAYS watch 2 episodes of the same show and then grandma ALWAYS reads to her.  She ALWAYS goes to bed with a blanket I made for her even though the equivilant blanket at home doesn't have to be part of bedtime every night.  The girl likes her routines.  And I like my girl.  Excuse me, my big girl.  I like my little girl too but she's not here.  She's at home working on growing and growing and growing.  Her body is making up for lost time.  I am astonished at how she has gone from looking pale and thin and not growing to gaining probably 2 lbs in the last 10 days, growing longer and her skin color is pink and healthy.  She still looks like she was born a few days ago but not for much longer.  I also feel so relieved because from the minute I first held her I thought something didn't look right.  I am so relieved to know that it was her skin color and she looked sick because she was sick.  She's still very delicate featured and that is probably just how she is, but there's a huge difference between delicate and ill.

Anyway, it was a good day.  I'm tired but that's fine.  Since I'm just getting back to all my meds tonight that's to be expected.

Sick

Last weekend one of my nieces had a slight fever when they were here.  It went away quickly with tylenol and that was it.  A few days later her mom was feverish and nauseous and didn't feel well.  That was the day after we went to the zoo.  Last night I was fine when I went upstairs and was taking off nail polish when I realized I was going to throw up.  And I was right.

Because dehydration is really bad for me I have a script for Zofran to use when I start vomiting.  I think I'm supposed to wait until I've vomited 2-3 times but I am not sure and I also wasn't sure that it wasn't the start of a migraine, in which case I'm supposed to take it immediately.  But it won't stop me from vomiting if my body really needs to so it's ok.  I took that, realized I also had a low fever and eventually got to sleep.

I haven't vomited anymore but I clearly have had some bug.  I've spent all of today on the couch (my mom had to be away all day so I've had the puppy who hasn't had nearly enough walks or exercise) and am still not really liking food much.  I try to eat things and then feel sick again.  So mostly it's fluids.  I'm supposed to stay hydrated enough that my heartrate stays under 110.  That's ok; it's faster than usual but fine.

When I get sick, and thank God that is a lot less than it was when I worked with sick people, it always reminds me how inter-connected our minds and bodies are.  Last night's meds were vomited up.  I may have gotten some but not much.  Tonight I will take only some meds because I can't take with food in any meaningful way and some will make me sick if I do.  Lithium is out for tonight not only because it needs food but because I have to be careful that I don't raise my level and I probably am not hydrated enough for that.  Emsam (the MAOI patch) will stay off another day because if I am dehydrated with that on the medicine concentrates in my blood stream and causes an itchy rash that literally covers my scalp to my toes and requires ER treatment.

Therefore one mild stomach bug is going to mean that my psych issues are out of control for the next 3-4 days, depending on how long meds need to be happy together again.

I have to find a dog I let out who is apparently happy enough to not let me know it is getting dark. 

I'm so tired that I'm a terrible dogsitter.  How pathetic.

Good

Things are going well.  I paid a massive amount of credit card debt (massive in relation to my income) down today and will pay it off next month with a small payment.  That was a good start and even better it was a start in the morning.  Topamax is helping me wake up more easily.  It doesn't get me to sleep earlier but I do get up earlier.  That's nice.

We went to the zoo today: my sister, both nieces, my mom and I.  The weather was perfect for me and for the animals; we were able to see some up close that usually aren't seen at all. Anne had a blast and Gwendolyn enjoyed lots of snuggle time.  She likes to be in very specific positions, mostly high on your shoulder with her legs scrunched up under her and a blanket swaddling her.  However, when the sun got in her eyes she let me know I was to move her down.

Gwendolyn (that's not hte right name but it's close and I forget the real one) is doing wonderfully.  She's probably gained a pound in the past 4 days and is definitely longer.  Her hair is growing in, she is no longer pale, her hands aren't icy cold any more, and she is smiling.  I caught a bit of one and it is hard to explain how much it means when you know that things could have turned out very differently.

Anne is doing wonderfully as a big sister.  She is so gentle and caring.  She did want a few times for the adult holding the baby to be changed so she could have attention from the baby holder, but that makes perfect sense.

I did not drink enough but otherwise did really well with a long day with a lot of stimulation.  I remembered my cooler of frozen washcloths and that makes it so much easier when I am overheating.  I took tons of pictures and got some really good ones.  Pictures are my memory so it's not unusual for me to take 400 on a day like today and then delete all but 75 or so. 

I am starting to get used to not having stress about money, stress about paying bills without enough money, packing the house, selling the house, saying good-bye to the house, major surgery on my niece, worrying before her diagnosis that something was "off", etc.  Right now the only stress is picking out things for the house and making my budget stretch to fit everything I want it to hold.  I'm pretty much down to just needing appliances and some furniture items plus finishing touch type things that cost almost nothing. 

This is a good time and I'm ready for a good time.

well

I've been on a very low dose of Topamax for migraine prevention for a week now. I've been trying to get on it for nearly 2 months and have been beaten back by sedation.  Not at night when I NEED that but all day, every day.  This last week though it worked.  I had a 4 day long migraine but I did not sleep all day.  And as the week ended something amazing happened.  My mood improved and my anxiety decreased.  Topamax is a relatively weak mood stabilizer and I'm barely taking any of it so this is totally unexpected but it is doing something.  Dr. Mind said I smiled more and was in a better mood than I have been in months.  And when he says months I think he means nearly a year.  So this is great, right?

Nope.  It may not be anyway.  I already fight with constipation.  I take a daily prescription med for it and am armed with a lot of other meds to use as needed.  Since this was becoming an issue I checked in with Dr. Body.  The computer system is down for his office and so I got a phone call back from the nurse who relayed his comments.  She had called me a few months back about something and managed to confuse some things enough that I wound up in tears and this time she was not very polite which is great; one bridge burned I think although I did not complain about her; was very careful NOT to complain about her in fact.  But anyway, the message said I needed to lower (ie come off) the topamax if I needed the doses of meds I was asking about.  I am a little confused in that I've taken those doses in the past and I'm not sure that I made it clear that I wasn't taking that much now and was just asking if I could go up since I knew I'd been much higher before.  And now I can't get back to him.

I am not willing to go off this unless forced to.  I emailed Dr. Brain to see if she had feedback and explained that the mood effects have been significant enough to make stopping not feel good.  So we'll see; she may not want to interfere with Dr. Body's work.  I'm asking her though if I can use miralax instead of what I was taking.  I hope i asked that.  I meant to.  I have to check because I'm not sure I did what I meant to.  I am going to look at the drugstore to see if there is a fiber supplement I can take.  I know some of them are not allowed with diabetes insipidus because I don't have water in my body to spare.  (This is why I don't want to use Miralax; it just doesn't work well when you are chronically dehyrdrated).  Perhaps there is something though.  So here's praying that this works because so little is out there that is going to help my mood right now and if something does I really want to hang on to it.

I went to use a coupon I had hoped would help buy a microwave today after I saw Dr. Mind.  I didn't find one of those but I did get some good deals that are exciting.  I got a comforter that came with a bedskirt (that I can't use with my bed but whatever), 2 pillows, and 4 pillow shams.  Perhaps I'll feel like making my bed in my new bedroom.  (Not likely).  I also got a bath mat, shower head, and a rug for the kitchen which had been $40.  With markdowns and my coupon it was $8.  That was exciting.

I've been having a fun time the last few days.  After my hysterectomy last year a lot of my hair fell out.  I had to wait for it to grow back in and then get long enough to be evened out.  Friday I got my hair cut and finally am able to wear it down after a full year of ponytails every.single.day.  I'm grateful that my hair was long to begin with as it would have had to be cut pretty short otherwise; just to get rid of my afro-mullet from growing back in she cut probably 4 inches off, maybe more.  But everyone seems unsure how to react exactly.  I think at least Dr. Mind and probably some of my family think it's down because I'm less depressed.  That's just coincidence but it makes it so that nobody is sure if they should say anything.  So I'm walking around with a drastically different hairstyle and keep catching people looking at me like they aren't sure what the rules are.  Although my hair fell out last year it's really probably been 2 years plus since it was down much just because I was too depressed to care about taming the curls to have it down and not look like a clown.  So it was probably the last spring I worked that it was down much.

I checked my online chart with Cleveland Clinic today to see if I had a refill for one of my meds available.  While I was in there I checked on my neurology appointment.  That is going to be a long day.  My appointment is scheduled to be 80 minutes long.  That's a long appointment.  I read my doctor's biography which I had only glanced at since Dr. Brain recommended her and it turns out she is a physical therapist.  I hope that makes it easier.  Going to anything related to a pain clinic is hard for me.  Going when I haven't tried anything close to well all but one migraine med and one muscle relaxer to treat migraines (and vicodin) feels really weird since most people will have been on everything by the time they reach this clinic and I just can't take the meds that quite possibly would work if I weren't on an MAOI (and probably other meds but the MAOI is the one I know is an issue).  On the plus side I've been on dietary restrictions before I was having more than 2 migraines per year and have been on even stricter ones than most people try for 3 months so at least I've done something.  Family meals around here are ridiculous now between my MAOI diet plus no nitrates/MSG/try to avoid preservatives/no chocolate/no caffeine/no artificial sweeteners and my sisters' family is vegetarian.  That limits greatly the things my mom is familiar with preparing.  Even when we find something we have to set aside some for me before final ingredients (aka cheese) are added as we discovered last night.  Cooking for me has become a game of "ask before adding ANYTHING" which is fun for all.  But it beats a several day migraine because I ate something I shouldn't.

This is one long post.  There is so much happening right now.....I didn't even talk about the house progress.  I think tomorrow we're going to buy flooring and ceiling fans as both will be needed soon.  By the time we get home there should be siding.

Oh how I wish I could tell the whole story

But I can't. However, I will say that my niece has gained an entire pound since her surgery and since she wasn't able to eat for a while after surgery that's pretty amazing. She's getting longer too and is starting to wear clothes that are 0-3 months instead of just newborn. Between this and the change in how healthy she looks now (before her color was bad and she just looked unwell) I feel so much better. Her pain level is decreasing now pretty significantly and her incision is closed over which is very, very good for reasons I can't explain. I hadn't seen her with her big sister really at all. Everything that has happened has made Anne grow up so much. She is SO sweet with "her baby", even rocking the carseat when Gwendolyn fussed before anyone had a chance to get her out. She frequently asks to give her sister a kiss and tries to get lined up just right to be where the baby can see her to get smiles. Anne is so much more comfortable here. She has a routine now for bedtime (I must do bath, then 2 episodes of some tv show on Amazon Prime, the grandma reads while she's all wrapped up in a blanket I made for her and she's asleep. She's not a baby anymore and the last 4 weeks have taken the last babyishness away I think. Bittersweet. They're up for my mom's birthday celebration tomorrow. My brother will get to meet his new niece for the first time. Otherwise not much to say. I am very proud that on my 3rd or 4th attempt I finally am tolerating 25 mg of Topamax for migraines. (If it helps with mood stability that's a nice bonus but I probably won't hit that dose). Every other time I've been knocked out and this time I've not. I've been knocked out by a 4 day long migraine by it wasn't the med. So Monday we'll ease it up a tiny bit more. Oh, oh, my house....that's big. I have a completely framed house, inside and out. It has a room and the deck is framed. It has a shingled roof and I think siding is next. The floor plan finally can't be changed after probably 8 variations. What we came up with though is great. We actually went in with the designer, her father/construction owner-boss and a construction worker and played around using beams to mark things off until we maximized the space the best we possibly could. Ultimately we wound up with some good closet space and a little hallway/diversion thing that makes my bedroom and bathroom slightly offset and not quite as open to the whole house. Yesterday I went appliance pricing (blagh) and found exactly the tile I wanted for the bathroom floor on clearance. I was able to get the whole bathroom floor for $36. Anyway, I'm possibly getting sleepy (please God) and so I'll stop typing. Copyright 2006 www.masterofirony.blogspot.com

Sad for the shooter

I'm having a hard time getting the shooter from the Navy Yard off my mind the last few days. Naturally my heart breaks for the victims and their families. But it is also breaking for the shooter, who was clearly mentally ill and clearly was seeking help in the ineffective way that happens when your mind is out of control. It just shows how much we need to learn as a society in order to see when people need help. The VA is saying over and over he only complained of insomnia. Did anyone ever ask him what kept him from sleeping? I bet not. He called the police in desperation and fear of his hallucinations days before the shooting. Did they offer to get him to an emergency room in a way that didn't make him more paranoid? I doubt it. I doubt it because I know what it is like to hallucinate and to not trust any thought because you don't know if it is yours or the thing taking over your mind. The time that I hallucinated the most was because I was very lithium toxic. I was aware that the thoughts weren't mine and while I heard voices saying many things they weren't telling me to do anything. That would have terrified me. I had visual hallucinations then (and some other times) and those are harder for me to sort out from reality. I am scared of birds and visual hallucinations often involve birds flying at me while I duck and cower and cover my head. Paranoia is another thing. Police and others who may come in contact with someone having a psychotic episode really need to know how to talk to someone who is paranoid. "You're hearing things, let's go to the emergency room" is likely to only make the person who needs treatment feel that they are being patronized and probably locked up and the worst thing for paranoia is to feel you can't get away from it. It needs to be very subtle, working within the context of what the person is feeling/experiencing instead of letting the person know that this is judged as abnormal. There are a myriad of other issues here: gun control, screening military candidates as thoroughly as possible, security in public places. As Jon Stewart or Steven Colbert pointed out tonight the fact that the man had a navy security card did not really mean much. Without that he would have shot somewhere else. He wasn't shooting because he was upset with the Navy. He was shooting because he was very mentally ill and nobody stopped it. There are parallels to James Holmes, the man who shot up the Colorado theater a year ago. He had been getting treatment but he also had told his friend to stay away because he was dangerous. He had a number of completely irrational actions and again the right questions weren't asked. It's not someone's fault but it is a failure of the general system, in both cases. The sad reality is that when someone in their late teens-early twenties begins showing signs of psychosis chances are pretty good they need some serious help. I was 24 when I started really having strong signs of bipolar all day every day. I wasn't psychotic and it wasn't nearly as bad as it would get, but I just remember feeling so strange all the time. I remember trying to describe the agitation I felt and the irritability and that I wasn't Jen anymore. It was not possible to find the right words. It could have been so much worse. So, so much worse. Copyright 2006 www.masterofirony.blogspot.com

Losing therapists

I probably will be discussing this periodically for the next several months so I am going to explain a little bit.  I don't think anyone loves changing therapists.  I hate it and dread it. 

I don't do well with most therapists.  I have had a lot of them.  Very few of them were very helpful.  The first one "let" me "choose" between staying in an abusive home or going to foster care when that's not even what would have happened.  That made me reluctant to ever try again.  The next was Dr. Mind the first.  He was great.  We got along well and seemed to have similar approaches to life.  I wasn't diagnosed with bipolar yet and didn't even take antidepressants until the last several months I saw him because I fought against them, but he helped me get over my fear of repeating that horrible situation from the past.  He also waited out my fears of confiding in anyone and by waiting I mean he would sit and wait for me to talk for half a session. I saw him through 3/4 of my freshman year and then after a year off saw him through the rest of college.  He did some truly kind things for me that helped me trust again.  One thing I remember was that my final Christmas break from college was one of the worst 3 weeks of my life.  I was ragingly manic from a pre-break antidepressant change that we didn't realize was making me manic and I slept 4 hours in 2 weeks.  I was a mess.  Not only did he email me and talked to me on the phone, including telling me exactly why overdosing on the amount of Zoloft I had at that time was going to do nothing more than put me on a psych unit and cause me to vomit (nobody has ever been so direct about suicidal thoughts and why they'd fail), he also took time to send me little funny things.  Months later I picked up a magazine and found that he'd taken the time to copy these things from there.  When I returned to school we met 4 days per week, for an hour and a half at a time.  It was too keep me out of the hospital and it was intense, hard work for both of us (especially since it turned out he was giving me his lunchtime).  It worked and 4 months later I was improving.

After I left college I had a few months off with Dr. Mind the 1st providing some support via email.  He also became a friend via email.  That's not traditional but it worked for us and over the years he played various roles:  friend, person I learned to get angry with, pusher when I didn't want to do things like see doctors, cheerleader, and most importantly filter.  When my brain was too sick to see my way through situations he walked me through them. 

Grad school was a parade of failed therapies.  One therapist completely ignored my clearly stating that I operate under certain Christian beliefs and sent my PTSD soaring by insisting I read a book on sexuality that I was far from ready to even look at and which didn't agree with my beliefs on some major points.  She lasted 6 weeks before traumatizing me.  Another was an intern and not experienced enough to handle the particular abuse I was discussing.  She tried but it was not the best match (and of course the undiagnosed bipolar thing was a big problem).  Then there was the woman who insisted that every problem I could ever had was from my childhood even though I kept telling her that the thing we were discussing was about ME, not abuse, and that I was handling the abuse well at that time.  She lasted 2 weeks.  There were 2 others I think and I don't even remember them.

I refused therapy for a long time after that.  When it became clear that I was really not doing well in 2002 I started seeing someone at the same place I go now.  I liked that therapist a great deal and saw her for 3 1/2 years until she moved to Europe.  However she was not very experienced with bipolar and she was not good at making me talk about things that hurt.  I could always change the subject to cats and we'd talk about that instead.  It became much more an expensive friendship than treatment but I didn't see that until I'd seen Dr. Mind a few months. Then I was angry.  Now I think she was in a tough situation; she wasn't that experienced, she took classes to try to learn more, and I don't think she knew that I didn't stay on track because my brain needed help.  I think she thought it was kinder to let me go on tangents and let the mania dictate what we discussed than it was to push. 

Dr. Mind has been what the grown-up, fully bipolar Jen that Dr. Mind the 1st treated needed.  He is not afraid to be tough with me, even when it makes me mad or I don't like it.  He is kind but he keeps me working with breaks as needed.  Time is not wasted with him.  Sometimes a session is pretty non-traditional but that's usually because I need a break from hard stuff and because I need to just talk to someone else sometimes.  Basically I'm learning social skills.  He is good at adjusting what we are doing to my moods.  Last year we did intense PTSD treatment.  Generally it is never more than a set number of sessions (I think 12).  I had more like 30 because we had to adjust to my moods and take some breaks when I was cycling too much or was too overwhelmed to keep going.  He has learned how to tell me things I do not like without my running away which I would have done from probably anyone who ever treated me in the past.  He's the only person I really feel safe with and that has taken years and much hard work on both of our parts.  For me to be able to tell him "I'm angry that you said ______" or "why did you say ________? It made me feel _____" is HUGE.  Relearning trust with someone else would be an enormous job that I honestly just don't care to do.

I know change can be good with therapists.  I know that not wanting to change is pretty normal in my situation.  But right now I have the best situation that I could have.  Change would mean seeking another "right someone" and then trying to adjust and honestly too much has changed lately anyway.  And I know from experience that finding someone that I like to work with can take months which is difficult.  There's also the simple fact that Dr. Mind knows Dr. Brain and is comfortable emailing her or calling if he thinks I'm in trouble.  They work together when I'm in bad places, so much that a few months ago I couldn't articulate why I wanted to die so badly to Dr. Mind but after he contacted Dr. Brain with his concerns she talked me through crying for hours and all the secrets came out finally.  I will miss that collaboration.

Anyway, I know there are other therapists.  I also know I've seen at least a dozen and that only 2 have been successful.  Risking losing that scares me.  There's of course a lot more, but those are the basics of why I am dreading this if it happens.

catching up

My niece is HOME.  She made it out on absolutely the first possible day and after major surgery and several days of NPO (no oral feeds) she managed to bounce right back into nursing and meet her homegoing requirements.  She looks better than she has in her whole 4 weeks of life.  She finally has color.  She's beautiful.  I expect we'll get to see some smiles soon.  I don't know how we will ever take even one of those for granted.

Emotionally this hit me hard once she was finally safe.  Yesterday I spent nearly all day in bed and slept for huge chunks of time.  Today I at least got dressed and sat on the couch.  But I am still emotional and exhausted.  I hope to get past this soon because I keep getting overwhelmed by feelings and not communicating well.  I was so upset trying to tell my mother that she couldn't reasonably expect to leave me to watch a puppy who wakes up 2 hours after I go to sleep.  I hate that but it is true.  So he's at the kennel until my mom gets home from helping them settle in.  It sounds like that's probably tomorrow; things were going well.

I got upset another time today because I looked out the window on the way down the stairs like I have since my mom moved in here to see if the cat was on the porch.  But he's been dead for a week.  There were tears.

I also just have been overly sensitive.  It's just what happens when emotions run high then don't need to be (plus I had some symptoms of elevated lithium last week and so had a few days off it to make my level drop drastically which is good in that it was effective and bad in that my body likes lithium).  I'm also so frustrated because I have gained weight this summer.  I'm tired of clothes not fitting and I'm tired of having to buy new ones.  For some reason I didn't pack the jeans that fit last year and so now I have a pair that doesn't fit at all and one that doesn't fit well but can be worn sort of.  Tomorrow I have to buy jeans.  In a bigger size.  I know that when I am in my new home I can probably lose some weight fairly easily but for now it is frustrating.  It also isn't just the less healthy foods I've eaten this summer; I have had a lot of med increases in the last 9 months and I'm sure they are part of the 5-8 lbs I gained.  That sounds like not much but it's enough to make me feel huge.  Apparently it is also harder to lose weight in menopause.  It makes me scared to try.  However I know for sure that better eating and more exercise would fix this.

I don't know what else I feel emotional about.  Everything in a way.  As it seems to do anytime I'm upset lately I start feeling like Dr. Mind is going to leave and that I can't bear that thought.  I wrote that 8 years is good but it is also bad.  I can't imagine him gone and I can't imagine what his leaving would/will be like.  So I pray that I can accept God's will if this is what happens and then I cry more because I don't want to have to pray that.

I think I need a bunch more rest and a few more days of my real lithium dose.  I need to have time to absorb everything that has happened in the last 3 weeks.

So much.

Recovery

My niece is finally doing well.  They let the sedation wear off today and she's down to just tylenol for pain.  Her catheter is out and she's nursing.  She is much more alert than she was when I saw her yesterday which was really hard.  She was very pale and lethargic and barely moving around because of the sedation they gave for that purpose. 

The first time I held her I thought something seemed off.  I think she has never looked well and she certainly hasn't grown much.  I believe that is about to turn around and she will start to thrive now.  I think that the problem she had (which was congenital and can cause issues in utero) was just making her not well.  Now she has to heal but she finally has a body where everything is much closer to normal.

By a month from now I think she'll be a healthy, active, chubby little baby rather than the pale, sleepy, teeny thing she is now and always has been.

There are many things to be extremely grateful for but I can't explain them without risking this becoming a search engine hit for her diagnosis.  There is literally one blog that I can find addressing this condition.  Everything else is medicalese.

She may go home tomorrow.  We'll see.  She has to meet requirements to go and not all were met as of 7 pm. 

Surgery

My niece had surgery today at the tender age of 3 weeks and change.  She did really well with a very long wait and no food.  Surgery went well and unless something unexpected shows up in her pathology she will be fine after she heals.  The condition she had requires frequent monitoring until she is a preschooler and then periodically through the rest of her life.  It should be fine but it can come back or a related problem can occur.

The hard part now is that some of the things required for her to heal are rough.  I can't be more specific without saying too much but she is going to have a hard few days.

It's a scary thing to go through and I cannot express my relief that things have gone so well.  Now we only need recovery to go well and well, the rest of her life.

Thank God.  It could have been SOOOOOOOOO much worse.

Invisible Me

Jean Grey asked:

Do you have any dreams? When I was on disability, I just had this loss of identity. I think if I had to do it again, I would try to be a writer- even if I didn't get published much, didn't make much, I would be a writer. Or I'd do more beekeeping with my dad- get more bees, and be a beekeeper. Or I'd hike the Appalachian trail. (section hike it) As for sleep, the best thing for my sleep was work. I never slept regular hours before I worked. Even in school, I didn't. Of course my ambian also helps.

Good questions. Right now dreams are hard to find. I start to think that maybe I could do this or that eventually but mostly they are things I really couldn't do unless my symptoms are better controlled. Dr. Mind and I were just talking about whether I will decide to renew my NBCOT (national OT license) next year or not. At one point everyone agreed letting it go was better but now Dr. Brain doesn't want me to do that unless I am absolutely sure I don't want to try PRN or something later. I can't see going back to OT even PRN simply because I am not good enough at not throwing myself in too hard and saying I'll do 2 evals but working 4 hours, half for free. I may keep it only because I'd like to try to teach online sometime. I think that is something I could do, especially medical terminology or something like that. For now I can't do that. It's hard to know what will happen; if a new med comes out next year as is possible that is an entirely new class of antipsychotic and it helps me (problem is that it has questionable trial results and may not get approved since it hasn't shown great results versus placebo in early tests) then I may find that I know more what I think I can do. Until something lets me sleep, wake up, controls my anxiety and obsessive thinking, levels out the constant cycling and removes the deep depression overlying the rapid cycling I think I'm stuck. Other things I'd like to volunteer to do but don't feel consistent enough. I'd like to offer time to NAMI members with disability paperwork. I am not an expert but I am fairly sure my experience with OT evaluations helped a great deal in my functional assessment forms. I also read a lot and know some tricks, and since I'm the rare mental health patient approved without a full review of records or even initial forms (they didn't even request records from my primary doctor) I think I could help someone. But I need to be able to trust that I can do things without backing out. Perhaps when I'm moved in that will be easier. As far as sleep goes I haven't slept well ever, since birth, except for the few years I had when I was pretty stable with Seroquel and Emsam. Now I'm on even more Seroquel, a bunch more sedatives and nothing helps. I often worked with 2-3 hours of sleep. During that good time I slept from 11 pm to 4 AM and it worked wonderfully. I wish I could get back to that. Part of the problem is that I tend to become tolerant to sleeping pills really quickly and once I'm tolerant it is forever. Ambien was great for me for a while but in the last 5 years I've taken 20 mg, I've combined CR and regular, I've tried it at different times and nothing helps. I take it in the hospital because I never relax there enough to sleep but it usually works 2-3 days. Lunesta was the same. It only worked a couple weeks to begin with and it was awful because there's a taste to it that you have to have the right genes to taste and I have it. It tastes awful from 30 minutes after taking it for the next 12 hours or so, no matter what you do. I don't think sonata worked at all, ever, but I probably should try it again sometime when I am insured. Gabapentin is probably the best I've got now and it is inconsistent and not extremely effective. If I'm upset or worried I am much stronger than my med cocktail. Tonight is the night before my niece's surgery and I'll be lucky to get much sleep at all. But I also am not alone in that one. Copyright 2006 www.masterofirony.blogspot.com

The benefits of 8 years of one therapist

Sometimes I question whether staying with Dr. Mind is the best thing. Usually I know without a doubt that it is because I have learned to trust him and have responded very well to his treatments over all these years. Sometimes it is really frustrating when he can read me too well. I was really angry last week and he knew it although I was not saying it. I spent a lot of time writing out a bunch of questions about several things that have bothered me in the last few months with him, particularly that he has been increasingly confrontational. My computer refuses to print with my printer for a reason I have yet to understand (Windows 8? I don't know. I installed the driver and it says it is recognized but it won't print). So I had to talk. Had I not spilled lithium all over his office it would have been easier but I did and it took a while to clean up because it scattered. I had 2 weeks of meds out so that if I can't make it next week because of my niece's surgery I'd be ready. I explained that I had spent days waiting to talk about my niece's problem only to learn that nobody had thought to tell me they were closed for Labor Day so I had to wait days more and that I knew he hadn't know how huge the issue felt by the end of all that waiting. I questioned the way some things were said and if the intention was the way I had interpreted it. I asked why a lot. I left feeling a lot better. He really did not back down from much of what he said although he did agree the timing may have been off. He explained a lot and that helped. It also helped to disagree in spots and know that I had said what I needed to even if he didn't really accept my answers. He did tell me that he worries about me because I have less fight than I used to. Some of that was undoubtedly because I didn't get angry last week, or didn't admit it. But it's also because something has changed. I haven't figured out how to change it although I know it is true. I think I just don't know what I'm fighting for sometimes. For years I fought as hard as I could to work. And now that is gone and I'm not in a place that work of any kind is reasonable because my sleep is so erratic and I can't be responsible about being somewhere. I hope that I get back to the place that worked best, when I slept from 11 pm to 4 AM consistently. But for now I'm very sedated but still fight to sleep and I need to sleep into the day. Even volunteering time doesn't work well when my sleep is this messed up. There are things I care about a great deal that are worth fighting for but they don't always need much fighting. There is a bug in my room the size of my smaller cat and THAT may be worth fighting....I think there is still a level that eats a lot of energy but that I don't talk about much where I am still fighting to want to live. I no longer want to hurt myself all the time but I feel that way because I work at it and it may not be apparent since I don't talk about it. I am anxious to talk to him more about this because he is right and yet I still think that I validly feel somewhat stuck in my life right now. I don't want to have a discussion where everything is about the things I have to fight for. I always hear about my nieces in that conversation, for example. And yes, they are worth fighting for but it's not the thing I need to give purpose to my life. Somewhat ironically I wrote my master's thesis on meaningfulness in life and now I have little of that. My nieces and various other things are immensely meaningful to me but it's not the same. My job was my mission, my reason for existing. (The bug is getting bigger. My huge cat is on the warpath. Hope he wins because squashing this thing would require repainting the room.) It's the I don't have something to do every day that really matters part that is hard. But at least he finally said it because I haven't known how and I think that my inability to say it has come across wrong. It's been really hard for me to say things the way I mean sometimes lately, something I'm assuming is related to depression and lack of sleep, and that's caused misunderstandings everywhere. So anyway, I benefitted today from those 8 years in that I was able to tell him what I thought and that is not something I do easily. I will admit and need to admit to him that sometimes it's also hard because why solve problems with him if he's just going to leave. I think that's a fairly questionable thing now but it could and may well happen and I am not going to know for a long time if it is happening. And yet making it so I can get through that kind of transition is so hard. And I don't want to cry so enough of that. The funny story of the day: When I saw Dr. Brain she increased my Neurontin dose a bit. I'd lowered it because of being on topomax but that drug is on hold until my niece is recovered from surgery and I'm not needing to be alert. It is helping me sleep better. I have a long history of sleepwalking, especially when I'm stressed and heavily medicated. This afternoon my mom wanted to know what caused the really loud noise that woke her at 4 AM. I was really confused because I knew I was asleep and then I remembered. About then I woke up (thought I did) needing to pee and feed my cat. I grabbed the cat when I walked past where she was sleeping on my bed (apparently) and proceeded to sleepwalk myself right into the door which banged into the closet door that is behind it when the door is open. I let the cat go upon waking rubbing my forehead and then I assume I went to the bathroom and back to bed. I'm not sure that even smacking my head woke me fully. It didn't hurt. Poor cat has been a victim of sleepwalking before. Once I found her in the garage where I'd put her during a night. Another time I locked her in a basement. She just goes on sleeping all the time. She probably thinks it is normal after so many years. Copyright 2006 www.masterofirony.blogspot.com

Someone else's words

But properly credited so there aren't any ugly consequences. I wish I had written something like this as well as this woman did. The link is here Copyright 2006 www.masterofirony.blogspot.com

Updates

First, random point that I"m sorry about posts that don't format.  If I post from my email it formats.  If I post from blogger it comes out in one monster paragraph.  I haven't figured it out yet.

My niece will have surgery Thursday.  She will be just over 3 weeks old.  It's major surgery and I am having trouble getting used to the idea that she is going to experience pain. The children's hospital is really good and I know they'll control it, but still....3 weeks old.  Maybe 9 lbs.  It hurts my soul somehow.  I don't know more details; my sister hasn't gotten a lot of things clarified that she needs to.  She's under the impression that they'll be in a family recovery room post-op. They know they'll be in the hospital a minimum of 3 days, more if she isn't meeting requirements.  She will be on IV feedings and possibly a vent for a day or 2 after surgery.  I suspect she'll be in intensive care (certainly with a vent, probably otherwise) at least initially because she is so little to have major surgery.  This surgery can be kind of bloody so that's a factor too.  Then she'll be in a regular room.  My sister is hoping they can keep Anne with them but I think that sounds like a disaster.  She is not going to happily stay in a hospital and honestly seeing Geraldine while she is drugged, in pain and unable to be normally held or snuggled (and shouldn't be jostled accidentally) is a bad, bad idea.  But it's not mine to make.  I"m hoping it is made for them, like no 3 year olds except during set visiting hours.

I finalized the sale of my home today.  Thus far I'm kind of numb. probably because I cried so much yesterday.  Perhaps that was Dr. Mind's point in his errant really upsetting me.  I am trying to write something to give him about what what he said to me.  I am more angry at him than I have been in a long time.  But anger did get me through the day I guess to prove that he is wrong and I can handle things without feeling sorry for myself.  Don't get me wrong.  I have been, and for quite some time.  However, I have repeatedly brought this up and repeatedly been reassured that it was part of the grieving process.  A few weeks ago I was told that i was going to have to face grieving yet again as the house went.  And either in his view the weeks that I owned a house that I was at risk of not selling after making it to the point that sale seemed certain I should have been done with feeling bad those weeks ago or the rules changed.  I don't know.  I am just so angry.  I went in there needing someone besides my family to talk about how incredibly scary it is that a 3 week old has to have a huge surgery and has a relatively low risk of even more serious issues (yet this is someone I love and that low risk is too high for me.  I've faced that risk before and it has bit me in the butt).  I'm feeling sorry for HER not me.  I am SCARED for me.  And I'd like to see him face the same situation and not be scared.  Then, to top it off he made a comment that I think was misworded but it made me so mad that I couldn't really handle it at the time, something to do with faith that sounded very judgmental in an area he knows perfectly well that you don't act judgmental with me because of past hurts.  I don't know.  I just know I am so angry at him and that this is one of the first times I've been angry enough to go back and say I am angry with you and I don't understand why you did this.  Part of the issue is that Dr. Mind has been confrontational a lot now and I feel like I'm never doing anything right.  Then he gives examples that are supposed to show I can do it but they tend to be from my past life when I was working and that doesn't help.  This is the life I have now and it feels like he feels I"m doing it all wrong.  If I didn't have such a good and long relationship with him I'd be thinking about walking but I know that if I can make myself talk about this we can fix it.  I just hate waiting 3 days and then there are the very, very long 3 days prior to Geraldine's  surgery.

Regardless, I'm officially kind of homeless for a while now.  I"m trying to keep my address separate from my mom's because of qualifying for financial assistance programs.  I will probably be in my new house in 6-8 weeks.  The foundation is complete and they will start framing this week.  We went and semi-finalized the design today.  I'm happy with it although to have stairs in the place we chose I have to give up having an entrance to the bathroom that isn't in my bedroom.  With diabetes insipidus this is a handy but I will feel weird with any visitors traipsing through my bedroom to pee.  Oh well.  I have a linen closet AND a coat closet, neither of which I had my house.

  And I know I"m NOT homeless really but it is a big transition to go from renting to owning a house and a bigger transition to go from owning to "renting".  (I'm not officially renting because well it's just not going to work that way.  But regardless, I know who owns my house now and it's not me.)  I was glad to hear the new owner is excited to move in and that he likes my little house.  I just miss the idea.  And now I'm crying and my eyes are so sore from yesterday's hours of crying plus wiping them with chemicals so enough about that.

Otherwise mostly I"m just annoyed with Dr. Mind and glad I'm seeing Dr. Brain tomorrow.  Hopefully she can stop the panic attacks and hopefully she won't think it's a good day to jump down my throat.

I am so tired.  I hope that Dr. Brain can fix that too.  I"ve been taking more klonopin than I"m supposed to or ever really have (because I used to have other meds for anxiety and haven't needed them in a very long time) and she knows that but I need a better solution.  I don't want klonopin to stop working for me.  Ativan did several years ago and now the only dose that helps is a large one that makes me sleep.  I can't take Xanax and nobody wants me to so I need to keep my klonopin use down.  It's hard when I'm on so much antipsychotic plus Neurontin and other sedatives and I'm still way too anxious.  Shows I need a new med, but it's frustrating.  A few years ago during one of these spells I was allowed a small dose of valium and rare use of it really was helpful but now I am not allowed to have it because of the suicidal stuff.  I would love to get a new script for that because a teeny amount helps so much and it can be used rarely but that is not likely.

Anyway, I've probably been feeling pretty sorry for myself writing this too and we can't have that.  (See, angry).  I'm just writing to try to think my way through some of this so please forgive any negative ways it sounds.  Not intended, just overwhelmed and not sure what I need to say to Dr. Mind that isn't going to make it worse.

New experience

I saw Dr. Mind today.  It didn't go quite the way I hoped.  Instead of just listening and being sympathetic which I desperately needed he decided that it was a good day to come down hard on me.  It didn't go well.

I left his office crying, which happens, and sat in my car crying and trying to calm down.  After a long time crying I realized that because I just cleaned my car I did not have anything to blow my nose on except a dust cloth with armor all in it.  And I used it until it was soaked.  After about 40 minutes I went back in and asked if he had another appointment.  He did and I took it because by then I was pretty sure I wasn't going to ever be able to leave without talking more.

Unfortunately I think he really wanted to leave early today.  But he stayed and talked to me anyway and said he thought I might be angry at what he said, not that it would cause a panic attack (I think that's what happened.  It lacked some parts of my usual panic attack but I think it was one anyway).  I'm not completely sure why he thought that; I did snap at him a couple weeks ago when I didn't like what he said.  But this time he inadvertently said very directly a nicer version of what I had been thinking and was very upset about because I didn't know how to handle it and I just lost it.

I stayed until I wasn't sobbing (unfortunately I kept him 45 minutes when I'm pretty sure he was hoping to leave considerably sooner) and then got my oil changed because it really needed to be done.  Unfortunately being so upset caused a migraine so I came home in pain and had a vicodin, supper and bed.  The migraine is less painful and doesn't seem to be light sensitive now as long as I avoid blinking but I'm completely worn out from crying like that for most of 3 hours and am not sure what to say to him in a few days.  I even understand his desire to confront me on this, like I said I've been beating myself up over the same thing for a week, but he picked the wrong day.  Which makes me feel less guilty about making him stay at work.  Only a little but he knows me well enough to know that was going to upset me and that I was reaching the end of my rope before he jerked on it. 

I am so, so tired.  Not sleepy, that would be easy, but exhausted from sitting in that car crying so hard.  I want to say something Monday about maybe not choosing this kind of day to be confrontational but I don't think it would help. He thinks he had a reason.  He's been a lot more confrontational lately and sometimes it doesn't make a lot of sense because he's confronting me about things I've asked repeatedly if I was doing during the rest of this time and he's said it was normal to be upset, etc. and suddenly now he doesn't like it.  I almost wonder if this is his way of separating from me before potentially leaving in the spring but we've had times like this before, just mostly 8 years ago.

I don't get it.  But I'm not sure I've got enough brain power to understand much.  I am just tired.

Interesting moment

I went to do a few errands today.  In the dollar store someone said "Hi Jen".  I didn't recognize her although she was familiar.  It took prompting like I was a bit slow (she had lost about 50 lbs and dyed her hair) but the speaker was a former supervisor who kept telling me she was absolutely on my side and that I was being treated unfairly when her superiors were working hard to fire me.  But after it happened she never had the grace to call me or indicate in any way that she wasn't entirely for firing me.  They mailed most of my possessions back by dumping them out of their containers into a box with a small hole and some of my things did not make it back to me.  They all hated me.  I'm not saying I was doing a great job for them.  I wasn't.  They had requirements that were more difficult than average and I couldn't keep up well.  But rather than trying to help or even listening to the OT who had evaluated me a year before when she came to talk to them about to help me work more effectively they sought out ways to fire me, catching me in errors that did not matter at all (or were not errors; at least one I was set up and another if I had pushed it with the OT board I would have won, plus that was done based on what the person I met today told me to do in her role as supervisor).  The dumb thing is there were valid reasons to fire me had they only bothered to look.  But anyway, it was totally uncomfortable and I still have no idea why she didn't let me just walk on past, focused on whether I felt like carrying 40 lbs of cat litter up 2 flights of stairs or if I would go somewhere tomorrow to get a reasonable size container.  But I've been waiting to run into someone from that time since I moved here and now I have.  I still think that unless she wanted to say something along the lines of "I'm sorry about what happened" she should have let me go on, but whatever.  This is part of the reason I don't work now.

Tomorrow I finally see Dr. Mind.  I am so ready for help dealing with all of this.

Friday I close on my house.  My mom is going along for moral support but when she said we should go to the better grocery up there afterwards and I said as long as I'm not crying she acted annoyed that I'm upset.  For some reason that I can't follow she thinks that if I'm sad about my house then I am not appreciative of my new place.  Which is not true.  I can be both and I've told her this a lot of times.  I don't know why she doesn't understand or how to word it differently.  Dr. Mind has tried too, so it's not just me.  It just isn't that big of a loss to her.  I guess it wasn't the fanciest home to lose and maybe that's why; the new place will be nicer albeit smaller but that didn't matter, it was mine.

Ironically I just got a letter that I had reached the magic point that I didn't have to pay mortgage insurance anymore effective my next payment.  Um, thanks? 

No news on the baby yet.  I'm surprised there isn't a surgery date but I guess that they'll do this on their own schedule.  If it were me I'd do it ASAP because it can become worse (much worse) by 2 months.  I did make my mom promise to tell me what is going on; my sister has been known to tell her things and then say "don't tell anyone" and so I find out from random people later.  Yet when I didn't want my bipolar known she told everyone.  Not that I'm bitter.

I'll be so glad to talk to Dr. Mind and have things be better tomorrow.  This is just too much stress and honestly it's probably very good that I have him tomorrow, Dr. Brain Saturday and Dr. Mind Monday.

Missed what I shouldn't have

I try to read reader's blogs.  I haven't updated my links list in a few years so that will be a project soon, but it came to my attention that at least one of you has been blogging and I thought she had stopped. 

So, if you have a blog and you'd like a reader, please post a comment on this post.  I'll be happy to read what you have to say.  I'll warn you that I am sometimes a bad commenter; it depends on how I feel.  For the next several weeks I will be needing things to read but may not feel coherent enough to comment, and my older niece may make it hard when she is here; she likes to have our full attention and probably will be extra needy while her sister has surgery.

I still don't know when surgery will be.  I know it's a pretty major surgery and she'll be in the hospital somewhat indefinitely; 3-infinite days depending on pain management and the requirements of the doctors based on the body parts that are removed.  Like I've said I can't be specific because well, the best illustration is this.  My little niece is 15 days old. Worldwide 600 babies with any variation of this have been born, statistically speaking.  And while that sounds like a number that's not that tiny, 5, 550,000 babies have been born in that time.  See the rarity now?  It's terrifying because there is not a specialist on this condition.  Her surgeon may have never seen it before.  She'll have tons of med students watching I"m sure.

It's rough for everyone.  I'll be so glad when it is just a (large) scar.