Could it really be that simple?

I am sorry I haven't been here in such a long time. I didn't intend to take a break from blogging, but apparently I needed one, and by the time I realized it, I needed to stay away enough that I couldn't even come post that I needed to take a break. I apologize for my abrupt departure. And I am not sure if I am back yet or not.

Once again, there is so much to share that it seems overwhelming but really the bottom line is that my PA (psychiatrist's assistant) changed my meds. And it worked. Really really worked.

She was concerned that even with an increase of the Prozac to 70mg/day I still wasn't getting better. In fact I started getting worse, with symptoms of Tardive Dyskinesia.

At one appointment she said, we've been treating this all along as depression with a side of anxiety. But your anxiety always comes first before the depression, so let's try treating this as an anxiety disorder with a side of depression. She has me slowly lowering the Prozac dose by 10mg/month (I'm now down to 40mg/day) which helped relieve the TD. And then she put me on Buspirone.

Buspirone is my new best friend. For the first time since I was about eleven, I can just sit and be, without needing to fix something or do something or even feel guilty about sitting and being. For the first time in a very long time, I feel calm.

I've been taking some time for myself, time to read without guilt, reconnect with friends without pressure, time to do some of the things I want to do and let go of the things I think I should do. (That's where the break from blogging came in.)

This was the first year that Pesach cleaning was not a source of panic and anxiety. I actually enjoyed getting the kitchen clean and into order. I was relaxed and a day ahead of schedule until I got sick (24 hour bug) and even then I was relaxed and catching up. It was amazing.

Life has slowed down a bit for me, though I am still dealing with the same small children and all the same volunteer activities. But now with the new meds, I can go for a walk in the morning with a cup of coffee, enjoy the sights and sounds, and even taking out this 30 minutes just for me, I am actually more productive during the rest of my day. I work a little more slowly, but I get more done. I don't entirely understand that, but I like it.

Meanwhile, I am very aware that I'm coming up on one year since my miscarriage and the delivery and burial of my daughter. I'm a little sad but I feel at peace with it. I am still hoping, baruch Hashem, to have another baby, but I also have come to terms with the possibility that it might not happen.

I am also off the Lunesta, finally. I was very sick with strep throat for a week right after Pesach and couldn't take any medication at all. By the time I was better, I decided I wanted to try sleeping naturally. Sleep is still elusive; last night I slept from 2-3:30 a.m. and 5-7 a.m. That's it. If I need to, I'll go back on the Lunesta, but I'm still hoping to do this one thing med free.

For now, as long as I have my Buspirone I'm happy. Finally.

Lost

I don't want to jump to conclusions but I am scared.

I have been so tired for so long. The upgrade to 5mg Lunesta has helped me sleep through the night most nights but I still spend a larger percentage of my daytime looking forward to sleep than I do looking forward to anything else.

Erev shabbos I went to bed early, feeling dizzy and unable to stand up any longer. I planned to be at shul in the morning. I woke at 3:37pm Shabbos afternoon. My husband says I am exhausted and needed the sleep. I am not sure what I am doing that is so exhausting.

I dozed on and off until my regular bedtime and then took the Lunesta. I slept through the night again and am sure I dreamed something important, though I cannot remember what it was. I woke this morning feeling a little better. More awake but not more energized.

As today wore on, it was as if my nerve endings were getting increasingly frayed. Being around even just a couple of people felt like I was suffocating in a crowd. Every noise was loud and grating. Every voice too shrill. Every touch painful.

I want to shrink into myself, curl up and hide away somewhere. I can sense tears, though I wouldn't call it sadness. Maybe just lost. There are projects I want to do but no energy to do them. Everything is a strain, a chore. Everything wears me out. My body cannot decide if it is too hot or too cold; it only knows it is not comfortable. Clothing is too scratchy, too warm, too something.

I really thought I felt okay late last week but now my husband says he's seen me headed this way for the past week. I am scared, concerned that this is my bad time of year, this is the treacherous path through the calendar, but this recent feeling seems to have come on too quickly, too sudden and without warning.

Due to scheduling conflicts, I will not see my counselor for three weeks. I will not see the psychiatrist's assistant for another two months. This doesn't seem like something to take to my rabbi. I don't even know if this is something I should do something about or something to wait and see or something not to worry about.

Is it just exhaustion? Or side effects of either of my medications? Or have I already crossed the anxiety bridge, missed the red flags again, and started my stay on Depression Island? I can't tell anymore. I only know I want to be quiet and alone and to sleep.

Seeing the new doctor

I think perhaps G-d is taking care of me.

I saw my new psychiatrist's assistant today and I like her. She is very perky and energetic and talked fast today but she was running late and we had a lot of ground to cover in a short time.

She is leaving me on the Prozac at the current level and concurrs with everyone else's diagnosis of Major Depressive Disorder. I don't think, with my history, anyone can argue with that. She saw that my previous psychiatrist had indicated OCD and with as recent as that diagnosis is, she wants to work with it a little and see if it is true OCD or some other anxiety disorder with obsessive compulsive tendencies.

The thing she said that surprised me the most is that she thinks the fact that I'm not in as good a place as I could be is that we're missing--that is, not treating--something underlying. She said the things I described with my sleep and anxiety sound very much like post-traumatic stress disorder, PTSD.

I was diagnosed with PTSD years ago, but I assumed it resolved when I stopped having flashbacks and excessive hypervigilance. She said if it is PTSD, it might mean a slight alteration in my meds, but mostly she thinks I'm on the right thing.

Except for sleep. It's too hard to say right now, she said, if I've built up a resistance to Lunesta or if I'm just not at a high enough dosage to combat the Prozac or if there's something else going on. So until I see her again in about two months--her earliest appointment, she is very busy--I can increase the Lunesta up to 6mg/night.

I know I am sensitive to medicine so I'll increase 1mg (1/2 tablet) at a time and see what happens. I don't want to take 6mg tonight and wake up on Friday!

Or maybe I do. I have been thinking about how nice it might be to hibernate and avoid this difficult time of year altogether. But then I think of how many things I might miss out on, too.

One thing she said is that she wants me to expand my list of things I do for "fun." She thinks there is too much in each of my days that is about taking care of others and not enough taking care of myself.

Of course in my mind, it is just the opposite. How dare I take a full eight hours for sleep! Think of all the good I could be doing during that time!

I think I have just figured out that my taking care of others around me is related very much to my having high expectations of myself, and others too to some extent. I will have to explore that further.

For tonight, a little more Lunesta and hopefully a full night's sleep.

Limbo

I feel as though I am in limbo. But it makes me wonder, what is limbo anyway? I see now, it's a Catholic origin. The description fits, but I'd rather have a Jewish term.

All I know is that I am not in a bad place, but I am not in a good place either. My meds are keeping the depression and anxiety at bay for now, which is a very good thing. The anxiety has been tolerable and while I have times of higher anxiety and negative self-talk, the majority of the time it is manageable.

My sleep is another issue altogether. I'm still taking 4mg Lunesta a night but it takes 1-2 hours to fall asleep and I wake for the first time after only 3 hours, then nearly hourly after that. My mind isn't racing or busy. I'm calm, relaxed. Just awake. There used to be only dark circles around my eyes; now there are bags under them large enough I think they're going on vacation.

I would call to change this, but I can't. A couple of months ago, my primary psychiatrist, who prescribed this for me in the first place and said I could take up to 4mg/night left the clinic where I'm seen. That was okay, because my regular monthly med checks were with the psychiatrist's assistant. But she left the clinic last month and I'm waiting to get an intake with a different psychiatrist's assistant--supervised by a different psychiatrist--and until I have that intake, there is no one to sign off on any changes to my meds.

This has had me a bit stressed. I liked the women I saw before. I don't know how my relationship will be with these new people. And I have trust issues.

My intake is currently scheduled for next Monday. I'm going to tell her all about the sleep issue. It's only been this way since I increased the Prozac from 40mg/day to 50mg/day so I am hoping I can increase the Lunesta a bit to compensate for the increase in Prozac.

Meanwhile, I go through my days dazed from lack of any quality sleep. Last night, for example, I took my Lunesta at 9:30pm. I finally fell asleep at 11:00pm. I woke at 1:00am and thankfully was back asleep within 15 minutes. I woke again at 3:11am and did not get back to sleep until 4:30am. I woke again at 6:00am, fell back asleep, and woke at 7:37am when I finally got up.

But I am dizzy and forgetful and stumbling and I have a big day today with many things to do before Shabbos and today is a day I am actually glad we do not have company coming over because I simply couldn't handle it.

And so I am on some sort of edge (limbo). The edge of sleep, the edge of sanity, the edge of complete consciousness. I don't know. I only know that while I've been in worse situations and baruch HaShem I'm not there now, I'd kind of like to not be in this one either.

I (day)dream of sleep.

When three out of four IS bad

My doctors and counselor have emphasized that there are four necessary components to my success in coping with depression and anxiety:

1. Consistent medication
2. Proper nutrition
3. Regular exercise
4. Adequate sleep

I suppose I could add that a positive attitude helps, but that's just not always possible, and I don't want to sabotage myself by requiring a positive attitude when depressed because that will just set me up for failure.

I'm consistent with the medication. I'm still taking generic Prozac, still at 50mg/day. I know that my ability to cope with each day is due in part to my staying on the medication; forgetting or missing a dose for whatever reason will impair my near future, and I'm the one who has to live with me.

I'm doing better with proper nutrition, in part because my husband is taking better care of himself and is therefore better able to help me with grocery shopping, meal planning, fixing healthy meals and so forth. If it were not for his contribution, there are many times I'm not sure I'd eat at all, much less eating healthy. Keeping kosher usually makes it easier to eat healthy. Sometimes it makes it harder, or at least demands more creativity. It is possible to make a fleishig (non-dairy) chicken pot pie from a treif (non-kosher) recipe, and have it taste good.

I noticed today, in fact, that I have lost some weight and the only major change I've made is eating better. Plus, I like how it feels and that buoys my mood too.

I am not a couch potato but I could do better about getting aerobic exercise. Cleaning house and chasing after children helps but is not quite the same as a workout. If only I had the room and the money to blog on a treadmill. Our health insurance now offers us a reduced membership at the local Jewish Community Center if I exercise some number of days each month. Time will tell if it is incentive enough for me.

And then there is sleep. Or no sleep. Like last night when I finally fell asleep at 5am and woke at 7am.

The Prozac, even when taken in the morning, will disrupt my sleep. It makes my already light sleep practically non-existent. My doctor tried me out with Lunesta, Ambien CR, and Rozerem, and only the Lunesta had positive results. Over the past few months, I've very gradually needed to increase my dose of Lunesta from 1mg/night to 4mg/night. Until recently, it has helped me get to sleep within less than an hour and sleep through the night, waking if I need to without feeling drugged or drowsy. It has brought dreams back into my nighttime, something that has been missing for over a year.

But within the past few weeks it has not been working as well. It's taken me longer to get to sleep and then I wake at 3am or some other middle of the night time and cannot get back to sleep. So I thought last night I would try going without it. Unfortunately, that meant going without sleep, too.

I know that Lunesta, like many sleep aids, does have a risk of dependency so that going without it may cause a few nights of interrupted sleep before the body's own sleep cycle takes over again. That appears to be the case with me. I don't see my doctor for another week, so I'm not quite sure what to do. What I know for certain is that I need my sleep. I need that REM sleep. I need more than 2 hours a night.

I'm doing pretty well on the 50mg/day of Prozac and there's no indication at this time that last year will repeat itself, despite my worries to the contrary. But staying out of the depression by using medication is resulting in less sleep, which increases my risk of depression, which might cause another meds increase, which will result in less sleep, which increases the risk....

It is enough of a challenge to live with the depression and anxiety/OCD, knowing there is no cure, only management. Why does treatment have to be so challenging too?

It maks me really wonder what G-d wants me to learn from this.

To sleep, perchance to dream

Life is--do I dare say it?--going well.

I had my first counseling appointment without children. They were both in school. It was strange to not be interrupted every few minutes.

My sleep is continuing to be a problem, but it is improving. The psychiatrist's assistant has had me try both Ambien (worked too well) and Rozerem (didn't work at all) and each time I keep going back to Lunesta. It's taken weeks, but now at 2mg of Lunesta a night, I'm finally sleeping through the night without waking for an hour or more in the middle.

I am told this is common with many of the SSRI antidepressants, that they work well on mood but disrupt sleep, causing some people to sleep much lighter. This is exactly what I found. On the higher (for me) dose of 30mg Prozac I've been on since losing my baby in May, my sleep has gotten worse.

But now with the Lunesta, more than the number of hours a night I'm sleeping, the most wonderful, baruch HaShem, thing has happened: I am dreaming again.

Really interesting dreams, intriguing dreams, fascinating dreams. Not nightmares.

It gives me a reason, finally, to look forward to the darkness of night.

I had thought there were no words

I have not been on the blogs lately. I guess you can tell. I was inconsolable for many days after losing my baby, almost a week. I feel I did eventually make peace with it. I think maybe she left me with gifts, changes in both my attitude and my body. Changes for the better.

The universe was kind to me, overall. I had an appointment with my new psychiatrist and my counselor two days after I was discharged from the hospital. The psychiatrist immediately increased my meds. We talked longer than our alotted time and she was, I think, very supportive.

It turned out I had two side effects from the increase--a higher dose than I've ever been on, though it is considered a starting point for most people. My side effects were a loss of appetite and dry mouth. So I was eating less and drinking more water. So sad.

Seriously, if I could have picked any side effects those would be the ones I wanted.

I made a memory book of photographs we took at the delivery. I included our ultrasound photos and photos of the burial. Since her death, I am seeing (living) dragonflies everywhere. They fly to me and around my head. I wonder if they are a message from her. I picked an album with dragonflies and butterflies on the cover.

I thought I had done a quick recovery and was playing "it would have been worse if..." games with myself. it would have been worse if she'd been full term. It would have been worse if she'd been born and lived only a few days or weeks or months. It would have been worse if she'd been my first child. I'm quite good at those games, but they serve no purpose other than to keep me from feeling my grief.

So I turned to another better method. I am painting a (large) room in my house. It had been unusable before but I have fixed and repaired and sealed and am now painting. It will be a cheery yellow with white trim.

It occurred to me today after emailing a friend that painting this room is kind of like Jewish prayer. It is something for my body to do, moving and concentrating on something known and familiar. Just as reciting prayers is almost like a mantra, painting is something like a kata, repeating movements as in a martial art. Both free my creative and spiritual mind to contemplate Something Else.

I have thought of my daughter a great deal while painting. I almost feel as if this room will be one she and I will share. It is comforting.

I am still hopeful that we will have another baby. Meanwhile I work on getting healthy again.

Having mentioned healthy, I did have another depression, as my psychiatrist expected. It was much more mild and the worst lasted only one day. She increased my meds again a little bit to try and keep my depression cycles to a tolerable level. I have usually four a year: January, April, July, and October. The worst are always October and January and the psychiatrist thinks it may be related to SAD, Seasonal Affective Disorder. I am sure that the fact that there are many, many holidays in both months might play a part, too.

I am exercising, briskly walking two miles a day. My sleep is not so great. I wake at 4am and can't get back to sleep for a couple of hours. My psychiatrist prescribed Lunesta but both times when I took it I woke with panic attacks and acute anxiety that lasted for a couple of hours, so no more Lunesta for me. I have lost 18 pounds in the past five weeks, which makes me happy. My blood sugar remains normal.

I am slowly unraveling my issues with my shul. I will save it for another post because it's so involved.

It is still so hard to reach out, so hard not to isolate, so hard to feel. Thank G-d for medication. And good doctors. And good friends. And a place to share. And the words to begin to heal.

I do not remember it being this hard

the last time I was pregnant. I don't remember constant morning-noon-night sickness and fatigue that won't let up. I don't remember only being able to walk from the parking lot to the store entrance and then needing to sit and rest before continuing my errands. I don't remember bouncing from elation to fear about having another child.

My husband does. According to him, this is the only way women are willing to go through this all again to have more children, if we forget the day to day difficulties. I can understand that.

My depression seems to be completely gone, but the odd concurrent problem is that I'm frequently so nauseous that it's hard to take medication, including my depression meds. I am under medicated right now but trying to get back on track. Maybe if I hid the pill in a spoonful of chocolate frozen yogurt?

Pesach has me completely freaking out. I don't have the energy to clean the way I should and my husband is doing what he can, and quite willingly, but I'm afraid it's just not going to be the same this year.

One of my favorite Pesach dishes is called Turkish Pie and is a wonderful mixture of ground beef and onions, cooked for an insanely long time, like three hours, and then placed into a shell made of softened matzo so you have something like a meat/onion pie. I look forward to it every year, and it takes pretty much all day to make. This year, I can't stand to be around the smell of cooking meat or onions of any kind. I guess I will have to wait until next year.

I'm very worried about controlling my morning sickness with kosher l'Pesach products. Saltines are my best friend right now, and I just worry that matzo won't do the trick. My previous pregnancies never took place over Pesach, so this is a first.

On a much more positive note, I have had some strange cravings at various times:

• Pineapple
• Caesar salad
• Poultry
• Potato salad
• Chocolate frozen yogurt
• Orange juice

I guess they're not that strange. In previous pregnancies, I craved tuna noodle casserole, pickles, Greek olives, rainbow sherbet, salsa, and Coke icees. I see there's progress here: this time there's more fruit/veggies and proteins and fewer sugars and carbs. :)

Maybe I should call myself the new improved Rivka. No longer (for now) depressed. Just hormone-enhanced. ;)

At loose ends

I had a horrible night. I hurt so much from yesterday and the uncertainty of this next week.

Hospitalization was looking more attractive, more necessary, until I checked our health insurance coverage and saw that we would need first to give the insurance company a 5 day advance notice for inpatient care unless it were a life or death emergency. And second insurance only covers 80%.

In 1995 the average daily cost in the United States for inpatient care at a behavioral health unit ran about $500 a day. Figure an increase of at least 20% over ten years (maybe much, much more) and we're talking about out of pocket expenses of at least $120 a day. If they change my meds rather than just the dosage, it takes 2-3 weeks to reach a therapeutic level, and they'd want me stabilized before I left. That means taking on a debt of at least $2000.

I can't do that to our family. Plus there are other issues, child care chief among them. I know the argument is that my life is worth more than $2000 but I can't justify the stress my family would be under to pay the bills, either. I'm hoping there is some other option. Or maybe the increase in my meds since Thursday will help before it gets to that point.

Holding pattern

I write this from bed while watching bad daytime t.v. at 1:30 in the afternoon. Right now it is just background noise. I am trying another meds adjustment for the next few days, to see if it can get me over this patch. Usually increasing from my usual 5mg a day to 10mg a day for a week or so works. But this time I started on 10mg a day back on January 10, and it is now almost a month later and I'm no better off. I've been on 15mg a day before and not had even a hint of mania, only sleep disturbances. I hope that an increase will lift me out of this, because if it doesn't, hospitalization is the only option left. Even I see that.

I ran out of medication mid-week even though I called in a refill last week. But the pharmacy couldn't get a hold of my doctor to get a refill authorized. Finally my husband called the doctor's office and they said they never got the request. My doctor authorized 15 pills (10mg each) but wants to see me for a physical before she authorizes more. I can't get in to see her in the next week because she has no appointments available, and if I'm taking 15-20mg a day for a week, I will run out of medication again. I only got this far because the pharmacy gave my husband two pills to tide me over until the refill could be approved.

I don't have a psychiatrist. I used to, but the last one I had didn't want to listen to me and my experience and what worked and didn't work for me. She wanted me to wean my baby at four months old and take a powerful anti-psychotic drug that would leave me an emotional zombie. I refused to wean my baby to take a medication I didn't want when there were other viable alternatives available. The antidepressant was working well but she wouldn't accept that. When I refused, she flagged my file at the clinic as a troublemaker and no other psychiatrist at the clinic would see me. My insurance wouldn't cover any other clinic that was accepting new patients. I am on my own.

I have different insurance now but I don't want a psychiatrist who thinks he or she knows me better than I know myself. I have lived with this illness for most of my life. I am intelligent and introspective. I know my warning signs. I am honest with my caregivers and my husband. I should have a say in my treatment. I am the one who has to live with myself.

Yesterday my rabbi e-mailed that he had some time today to talk. I wrote back minutes later and said whatever worked for him was okay and could my husband join us. I don't know what happened, but I haven't heard from him since and Shabbos begins in three hours so I don't think we are meeting today after all. Tomorrow he is teaching after shul. It's hard not to be disappointed, to wonder what happened, to think about what I need from my rabbi. It's hard not to take it personally, that I'm not important after all.

Now I feel like my meds are being held hostage, or that I'll run out again before I can get in for a physical. Or that medical beaurocracy will drive me to the hospital just for medication management. I feel like the universe is conspiring against me.

Still I trust that things will work out. I trust that G-d knows what is best for me. I trust that what is meant to happen will happen.

I took a single Tylenol PM last night to help me sleep. This morning when I looked at myself in the mirror, my eyes were sunken, deep dark circles all the way around my eyes. My skin looked grayish and pasty, my mouth in a relaxed frown that hurt to smile. I went back to bed, which is where I remain, resting, watching bad daytime t.v. and just holding on.

Update: still no word from the rabbi. However my doctor's office called and said they had a cancellation for next Wednesday morning, so I will see her then. My counselor called today and said she blocked off an hour on Monday and I could see her again then. I know it's her lunch hour.

She is also working to get me an appointment with a physician's assistant who is supervised by a psychiatrist. She has really good things to say about this PA, and I could schedule counseling and med checks in consecutive appointments in the same building.

One of my friends that I e-mailed sent a card that I received in yesterday's mail, and another one today. She's also been sending me daily e-mail. Another of the four friends I e-mailed is coordinating with my husband to help as she can.

I wish my Jewish community were here for me, but I am very appreciative for the support I am feeling now from others.

To P or not to P

When you're dealing with depression (or sleep deprivation - BTDT too), even little questions become huge.

Tonight's big question: do I take my meds (Prozac) or not?

The uncomplicated answer is a big, fat DUH!

But my case is complicated. Three years of medication management has demonstrated beyond a doubt that I function best on what the experts call a "sub-clinical dose." That is, a lower dose than doctors would normally prescribe, probably because I'm so sensitive to medication.

Prozac comes in 10mg pills. That's the smallest dosage made. My "therapeutic dose" (where I function best) is generally at 5mg per day. Due to all sorts of logistical reasons that would bore you to tears, two years ago we decided that I'd be best served by taking one 10mg pill every other day.

But sometimes, for reasons that are unclear, I need a bit of a boost, and I was given the go-ahead to take one 10mg pill every day for up to two weeks, then bring it back down to every other day.

I can't stay at 10mg/day for too long or it interrupts my sleep and I run a greater risk of triggering a manic episode.

Don't get me wrong. I love my "normal" manic episodes. I feel good, I'm cheery and happy and I get a lot done. I'm the best volunteer anyone has ever seen! But if it goes too far, it can be detrimental, and I don't want to go there.

I'm in one of those slumps now, and so I wonder, do I bump it up for a week or not? I'm already having problems sleeping, not getting to sleep until 3 or 4 in the morning, and having to get up with my children, one of whom is too young for school.

Even now, thinking about tomorrow, I'm feeling overwhelmed, and I don't have to be anywhere except home! Yet dealing with e-mail that needs answering and planning a child's birthday party and some of the other volunteer activities I've taken on... they're just so hugely overwhelming that all I want to do is curl up in bed and cry.

So I guess the answer is to P after all.