Ugh

The last 4 months I've had to undergo a big attitude change. After years of treatments that only partly worked and which gave me all kinds of yucky side effects I had thought there were things that I absolutely wouldn't accept. Like another 20 lbs, for example. We chose Seroquel over Zyprexa to reduce the chances of weight gain, but unfortunately I gained weight. I think it's got a lot to do with my thyroid swearing at me for not producing adequate hormones, but regardless, I've gained a lot of weight.

Since I go back to work next week I need to buy scrubs. I knew my shirts weren't going to fit. My pants, however, I thought would be ok because they are drawstring and have always been somewhat large. No go. I'm ordering pants to go with my shirts.

I feel like warning people at work that I've gained weight. I know people will talk about me when I show up anyway, but showing up with all this weight gain and some serious tremors make me pretty self-conscious. Having all new scrubs will add to this because scrubs last forever and we just don't usually replace all at once.

I am trying to be mature. Crying and anger are not going to change this. But it still isn't my favorite thing.

Drat

For all that I've said about feeling so good, I've had a small worry with me throughout the last few days.

My energy had been trending rapidly upward since my thyroid meds were adjusted in the beginning of December. Then Christmas Eve I did what would be a normal amount of things in one day, and I found myself totally exhausted Christmas day.

I thought it would go away. It hasn't. In fact the exhaustion has increased again to the point that sleep is all I care about. Yet I know I am not depressed in any way. Plus I have other thyroid symptoms, especially being cold. I am freezing at all times and it's just not that cold right now. And my skin is dry enough to be used as sandpaper. Etc., for those who know the thyroid dance.

For the first time I'm guessing that my thyroid isn't right still. I tried to call to see if I could do my bloodwork sooner but the doctor wasn't in today. So it's going to be Wed. before I can find out and Thursday before I can be tested. I'll be cutting it close going back to work next week.

The would be the thing I don't need...

Clarification

Emilija had a great comment on a post below. I gave a link to a table where potential mood stabilizers are given divided into categories of research which show they are effective, neutral, or not effective. She pointed out that some of those in the negative category do work, and some in the positive, FDA approved can trigger cycling for some of us. I started to reply, then decided it was a better post.

Now I lost my original writing. Too bad since of course it was brilliant. :)

Anyway, what I was saying:

I think that this kind of table is a nice guide. It's not definitive. In this case I have used this particular table because I've gotten a lot of very helpful information from the author over the years. (The page is www.psycheducation.org and the author is Jim Phelps. He also is the Ask a Doctor at www.bipolarworld.net).

What I think this is useful for is determining what is the better of 2 choices. If one drug is from the positive results table and the other is the negative I'd rather try the positive one first. We all know people who do well on the drugs in the negative column by their own reports, so clearly the data may not be reflective of what we as bipolar patients feel, but my goal in starting a new drug is always to have the best chance of success with as little fuss. Having said that I've taken drugs from all 3 columns, I think. If not they've been considered and neurontin is up next for anxiety.

I'm a biochemical nightmare, so I like knowing that we're using things that have fairly strong evidence that they will work. On the other hand, I know that there is not research done on me that reflects my biochemical nightmarishness, so nothing is going show to how my mind and body will react to any given approach.

Another example of this is the "antidepressants are contraindicated for bipolar patients" theory. When I was diagnosed I had been through every dose of 11 antidepressants. None helped, most made me worse. I was told that I should avoid antidepressants and that they had nearly certainly been a big force behind my severe rapid cycling. Fast forward 2 or 3 years. I was depressed all the time, nothing was helping it. We decided to try an antidepressant that I'd previously tolerated quite well and use aggressive dosing to maintain stability. I was pretty sleepy for a week and then I felt better. I've been on antidepressants pretty consistently since, although the one used had to change thanks to developing hypertension from the one that worked. The current one (imipramine) works extremely well. We took me off it in the fall and I went back on it quickly.

Wouldn't it be nice if you could just enter symptoms in a computer and get a print-out of what you need to take an how?

Whatever works

In something of a continuation from the last post, here is my theory of med management: Whatever works.

Once upon a time I had many pre-conceived ideas about how many and what types of meds I would take. That barrier broke 3 ways. First, I agreed to take antidepressants when I was 21 (11 years ago) and agreed to take them again when I needed them when I was 24. Second, I agreed to take Lithium. That was hard. Even though my doctor was careful to tell me it wasn't necessarily for bipolar it was a step towards acknowledging my depression wasn't situational. The final step was accepting an antipsychotic. I just never thought I'd get that far. And then there I was on 3 mood stabilizers, having not benefitted from a 4th mood stabilizer, and in desperate need of something to stop raging depression/mixed symptoms. I didn't even have a very emotional reaction to swallowing my first Geodon.

Over time I've learned that I have no ability to decide in advance what I prefer. Ideally I want to be on few meds and low doses to minimize side effects. But that's not how it works for me. I remember when I started depakote and gained weight that I read that usually when weight gain becomes an issue the dose can be leveled off. For me that's untrue, because my levels aren't even close to therapeutic when they should be. I cannot have preconceived notions about meds because I'm going to need them all.

If you look at a list of what I'm taking and the doses you'd think my doctor was abusing me. You'd think I was sedated out of my head. The thing is, I'm not. I just have different med requirements than most people. I look and feel really good at this level of sedation. The only complaint I have is being more sleepy than ideal, but that's improving.

So that's my med motto: whatever works.

Getting Good Treatment

I've said this in posts, but never have devoted a post to this. No matter how miserable I have been at times, you can go back through this blog and see that I always know that I'm getting the best help available to me. That's not coincidental with the question of how can I be as sick as I've been and still work, etc. Good treatment is the #1 thing with me and always will be.

I see so often people who aren't feeling better, who feel misunderstood, who lack a sense of control over how they are treated, and who are angry at their doctors. Yet it is hard to argue with a doctor or refuse a treatment. Many times those people will have a list of meds that I read and think "if I know this is not a particularly effective combination then why is this doctor telling the patient it will cure them?". It's true that there are meds that work for some of us and not others, but it is also true that some meds are used as mood stabilizers while the literature says they are not effective.

I think first off, everyone needs to know this. As a healthcare worker who is not a doctor I see this all the time. People, doctors ARE NOT GOD. Never let your doctor push you around. Listen to them and if you don't like what they are saying then find another doctor. Your doctor should be open to your ideas and suggestions. If you just have a bad feeling about a med and want to hold off trying that one in favor of something else, your doctor should either explain the reasons behind drug one or give you another drug. Just know that you may wind up like me and wind up discovering that the drug you've avoided for 2 years is a miracle drug for you. But I had good reason to want to avoid it and avoiding it probably made it all work out because avoiding Seroquel is why we put my Depakote dose so high, and I think it is the combination that is so good. You have a right to ask questions and a right to ask as many as you want. If you feel rushed ask to book a double appointment the next time. Your insurance will pay, it's just a different billing code. If you feel you need to see the doctor more frequently than ask to schedule that. If you want your doctor and therapist or your family doctor and psychiatrist to communicate then ask them to do so and sigh releases. I have gone to the same counseling center for nearly 6 years. Everyone there knows that from time to time I'm going to ask for an extra appointment. 18 months ago when I was on disability we did that whole time with bi-weekly visits; this time I only had 2 visits a few times. But if I think my moods have gone crazy then I'll be in there without even thinking twice because I am the one paying the therapist to help see the moods, and if he doesn't like it, too bad. And yes, that's a conversation we've had.

I guess the point here is this: if you are taking your meds and you don't feel good, something is not right. If you or your loved one takes the meds and the behaviors are still there, (still there a lot, sometimes things are still going to be there some), if it seems like it should be able to be better, then you need to get someone to be changing things around. I've been on over 40 meds at generally every dose for each and in different combinations. I can't imagine how many combinations that's meant. If your doctor says that whatever you are on is the best for you and doesn't have a good reason, find another doctor. There are certain things that are standard when treatment seems to not be working, like switching mood stabilizers to the ones with most proof of effectiveness or dropping an antidepressant.

Second, don't see a doctor you don't like. I did this. I nearly killed myself. I have never, in all the years I have battled bipolar, come so close to suicide. And that was several months before that same doctor put me on Prozac, which had everyone in my life thinking I was going to be signing into the hospital within days.

Third, and this is a big one, realize that your health is worth extra effort. So often people say there aren't any psychiatrists where they live. Well, I live in rural Appalachia. So you are very unlikely to be any worse off than I am and I have super doctors. I think there is one psychiatrist in this county and he is at community mental health. I believe my insurance covers 6 in the nearest city (an hour away) and the last time I checked none would accept a bipolar patient. I skip that city and the next one to go to a major city with a major university hospital. There are actually 2 in that city and I've gone to both. One of the is one of the top in the world. My doctor is "just" an expert but it makes such a difference that she is part of this academic world where she can (and has) contacted the top doctors at both of these hospitals about me.

When I was first trying to get a real diagnosis a convulted process got me to university #1. I actually called #2 first because it is the more famous of the 2 but they insisted on having records from the doctor I was currently seeing. I didn't want to tell her I was switching. I argued and they tried to put me in partial hospitalization based on a phone screen. It freaked me out. So I went with #1. I learned with them to be very, very honest. At first they couldn't get me in for something like 2 months. I burst into tears because I knew I couldn't last that long. They offered hospitalization but my insurance wouldn't pay for psych. So they found me a place within a week. I was enrolled in a clinical trial within 3 weeks of that appt.

After the clinical trial I switched to my current doctor who ran a few days a week clinic in the closest city, along with her own private practice. Last year she closed her practice and joined hospital #2, so now I go there.

When I was coming off the clinical trial my therapist arranged for me to see this psychiatrist. She's very good. She seems to intrinsically know what will work. She has never hesitated to try things, even things that were somewhat odd. She lets my messed up body dictate what happens. She cares, enough that a few years ago she called me on Christmas Eve to be sure I was doing ok. As I said yesterday, I go every 4 weeks without fail (I have never gone more than 6 weeks without seeing her in 5 years) and the shortest visit I've ever had was 45 minutes. The longest has been close to 2 1/2 hours. Generally it is 75 minutes. I have her email address. I can also call and her secretary should know that I'm a fragile patient with a history of serious med issues. And I can control many things. I am allowed to ask to put off trying this med, or to try increasing another before adding something. She absolutely listens to me.

I drive 2 hours each way for every appointment. That means that 1 Saturday per month (she sees me on Saturdays) is a 6 hour committment to psychiatric care. During the winter I spend the night on Friday so it is actually a 36 hour committment those days.

WHAT YOU MUST KNOW:

Anything you spend on medical costs over 7.5% of your income is tax deductible. This makes it ok to spend a substantial amount on medical costs because you'll get it back. Last year my medical deduction was around $6000. It's easy to reach that 7.5% with typical bipolar care because therapy, psychiatrists, meds, and anything not covered by insurance count. You can also count mileage over a certain distance (I think 50 miles) and lodging. I just plan financially that I'll spend this huge amount and then get it back in the spring every year.

Also, do the math. My doctor's current charge for my long session is $219. My co-pay is $50. My insurance covers the rest. Several months ago I looked into a job change with a change of insurers. I did some math and learned that if I had to pay 30% (the out of network fee) it would only be $15 more than I pay now. And remember, that will come back in your taxes.

In summary, don't accept bad care. There are hundreds of drug combinations and it sounds like many people are being given things that don't help enough and left to hang. It is so hard to advocate for yourself when you feel horrible but you have to.

Geesh

I just did a bit of calcuating. And I learned that the daily cost of my prescribed meds alone is $74. Thankfully insurance covers most of this, but wow. I knew I had golden stomach contents but this proves it. My monthly Seroquel bill is something like $1500.

I'm awestruck. Whatever it takes I guess....

Response to Comment

This started as a response to Jon's comment on the post below, but it quickly turned into a post.

For the most part I didn't see anger. But every time I've ever seen this discussion, and of course it comes up a lot on various pages, it seems like quite a few of us are angry because modern medicine hasn't gotten this to a point of easy cures.

I've been there. But last January I failed Trileptal, leaving me with only 3 untried meds, all of which were not great choices in theory. I also had 2 meds that I'd had bad experiences with to re-try. My choice was to try those 2 meds. First was lithium at a tiny dose. As long as it is at 300 mg and I monitor for signs of dehydration I'm ok and benefit from that tiny amount. Then was Lamictal which gave me the rash so it's off the table even though it worked well.

I was very angry during that time and the next few months where we edged the Depakote dose to the maximum I could tolerate. But I was angry at the unfairness of allergies and poor responses, and maybe that's what seems different; I went through the "I have to take HOW many meds?" anger years ago.

Ultimately Seroquel is giving me the best days I've had in 10 years. The anger is going away pretty quickly now that I finally see I can feel good and it is lasting. I know I'll get sick again. But this time something finally happened. I'd spent years waiting for the major episode that I actually fully recovered from. I always had major episodes and bounced almost back. Last year it was so much less than before I'd been sick I was terrified. But now I am suddenly better than I've been in years. I bounced back to my baseline plus with this new combination of meds. I have a lot more confidence that this will work now that it's happened.

I imagine that I have a defensiveness that comes from being a medical professional. Every so often in my career someone (nearly 100% of the time a family member who is not involved at all) will come wave a Medicare statement in my face and yell at me about how expensive therapy is. Well, in a way that is true. Therapy isn't cheap. But like all medical procedures you are paying for my expertise, education, and experience; you're paying for supplies; you're paying for treatment time; you're paying your part of my malpractice insurance, etc. When this kind of thing happens I'm invariably blamed for not causing faster healing. Even though I know that I am very ethical about this sort of thing I still get frustrated whenever it happens. Therefore I probably am more aware of hearing (not on Jon's post necessarily) the statements that western medicine is dominated by money and is ineffective at helping. I just identify myself as part of western medicine I guess.

On the other hand I think it takes a lot of courage to try something alternative. As I said yesterday any supplement added to my med list is a risk, and the few vitamins I do take were scary to slip into the mix, especially because they smell and taste so bad. I was sure I'd throw them up for a long time and throwing up vitamins means throwing up something like $50 worth of other pills each night. (This Seroquel/Depakote high dose thing is very, very expensive; thank God for insurance). Fortunately it only has happened maybe once.

When I had been diagnosed just over 6 months I had a 4 month period where I was adjusting to a new psychiatrist, a new job, a new house, and I was vomiting constantly from Lamictal. I was not good about taking meds, my doctor was being kind of strict about that (as she should) and there wasn't good communication. Finally I decided to show her, took those meds every single day and tracked the vomiting. At that point we started to work together. Maybe that collaboration is beyond what typical medicine provides. I know I seek out providers who will do this and I refuse to accept less.

At this point I don't know what my point was when I started, other than maybe I hope that other people are able to find the good things that western medicine can do for us. It's not perfect but I doubt anything is going to be. Some people are almost certainly being treated for the wrong disorder and that's not helping them. If treatment isn't working do whatever you can do to get to a major university with a mood disorders clinic. Enroll in a trial; your treatment will then be free, often for a substantial program. Level III trials are with drugs known to be safe, usually you're helping see if a cocktail works or if this particular drug is useful for bipolar as a secondary label. Do not accept mediocrity in psychiatrists; it is worth big sacrifices to find a fabulous one. Make your doctor treat you like you're the one who lives with the side effects and you're the one who knows how you feel. Never accept less.

On the other hand one could call what I've done stupid. I don't know the total drugs I've been on for bipolar and side effects of my meds but it is between 40 and 45 since Sept. 2002. I need to update my med list blog to reflect the last 4 months. Either I've been ridiculously stubborn and it finally paid off, or I just don't get the point that I'm not going to be well. Whichever it is, I am proof at this point that sticking with it for 5 1/2 years and up to 45 meds at a million different doses can pay off. Believe me, I know this may end tomorrow. But I don't need to think about that like I always have, because for a brief moment at least I am getting to live.

Thinking

I've been finding it interesting lately that so many of those diagnosed with mental illness are so angry with the medical world. There's a discussion going on at Living with a purple Dog (see links) that has increased my interest.

I guess I come at this from a weird place. I work in the medical establishment. I do use a variety of techniques, but most of what I do is pretty standard. I supplement with vitamins and minerals, but not that extensively as adding things to my cocktail is a bit frightening at this point (too many chances for interactions and we know that if an interaction is possible I will probably react). In the past we've discussed trialing a few supplements but ultimately adding the number of daily pills required meant it wasn't a wise decision. I struggle to take doses more than once a day; I now do twice a day pretty well but it's a fight. Supplements often ask for 3 or more times per day.

I have faith in God and His healing. I am well aware that faith is what keeps me alive. However to date faith has not healed me. It may not do so until I die.

Others talk of treatment with accupuncture and other things in that ballpark. I don't even have those as options without requiring ridiculous travel. So that's going to remain a who knows based on very rural location.

I also have avoided horrible problems with doctors others have experienced. The earliest psychiatrists I had didn't see the disorder, and the last one before diagnosis was an idiot as the atypical presentation was almost gone by the time she was seeing me and it should have been really clear what was wrong with me. But I was diagnosed by a doctor you have heard of if you've done much research on bipolar and treated by a fellow and him for 6 months. At that point I switched to my current doctor who accepted my case after my therapist talked to her. She took it with a committment to complications, long monthly appointments, and frequent contact with me. That was almost 5 years ago. I still see her monthly, usually for 75 minutes. Not a typo. And that is on a Saturday. She does a clinic for VNS patients that day and works me into the schedule. My doctor lets me make decisions. I nearly always pick my med and doses are adjusted by my feelings. Sometimes I'm probably being off the wall, but it is infinetely better that I feel some control. I am never told to take something without extensive explanation. I even get copies of my labs. (Again, acknowledgment that I am a healthcare professional and able to understand them easily). Reasons are always given. For years I've refused to try Seroquel until there weren't other options. I didn't try Seroquel until I had to. Turns out I shouldn't have been afraid of it.

The medical model has not cured me. It has not taken away the pain, nor has it given me a quality of life I'm thrilled about. But it is what I have.

I see a lot of people who are (as I'm sure I was once) so upset and angry because they're taking med combinations that aren't working. I say "as I was once" because I'm referring to people who are on really minimal meds, a first cocktail tried, say. I didn't really get to have that freak-out because I knew the day I started med #2 I'd be starting med #3 soon since I was in a clinical trial. When I started mood stabilizer #4 plus ativan plus inderal for tremors I did panic a bit. Otherwise, for me, the only time I've really panicked about western medicine has been over the last year as it looked like my options were running out. But now that seems to be a non-issue, at least for now. I still have 3 boosts on Seroquel (hopefully) and there is an extended release Seroquel now that I can try if needed. Often I get a boost from extended release. And now that finally an antipsychotic worked for me there's presumably a bit more hope another will if needed down the line.

I guess that even though western medicine is not exactly great at treating me it is the only thing that has kept this disease from killing me. My anger isn't at the lack of progress, as I think there has been a ton of it. Remember, just 35 years ago there wasn't even lithium. In the 5 years I've lived with this there have been so many drugs approved for bipolar as a secondary approval. Do I think this occurs for financial gain and not because the pharmacy companies are wanting to extend their patents? Of course. Do I get sick of paying hundreds of dollars per month for meds? Of course. Is swallowing 28-32 pills every day remotely fun? Nope. Do I know how very fragile my situation is and probably will continue as long as it takes 30 pills/day to feel ok? Of course. I also give counseling a huge amount of credit. It's not a fast process and I know it may never really end, but I've come a long way just in the last 2 years.

But I'm alive. I'm getting well. It may not last long, but all signs point in the right direction. I was doing well before this episode hit, and I am now back to even better than that (aside from low energy).

I know that medicine and doctors cannot cure me. I was told at diagnosis that even remission is probably a pretty far off dream for me. I like to aim for "manageable". And medicine is one of my only physical tools to get there.

As to whether there's a point of "recovery" from bipolar? Well, that's a hard question. I think before that can be answered we have to figure out what BP really is. As discussed other times, I think BP is way over-diagnosed, and I think many people who have been mis-diagnosed can probably be fine. I think a true bipolar is not going to achieve more than control, because that's the definition of BP. I suspect that for a true bipolar it's unusual to do this without meds, but what do I know? I do know that for me, meds are required.

Merry Christmas

Going into Christmas with the perspective of knowing that with what you've been through in the last few months the holiday is unlikely to be the worst thing that happens to you certainly makes it easier.

I did great. I'm continuing to meet goals left and right. I went to church last night. I handled the music and the sitting still without issues. The only part was that my candle kept going out which gave me the giggles.

The only bad thing was that I overdid it yesterday. I got up early and went to my mom's. We did a lot of cooking, took her 2 dogs to the vet where one of them misbehaved terribly on my watch (he is usually a very, very good boy), cooked some more, had dinner and presents with a friend, went to church, and watched a movie. This morning I got up and ate and showered, then made fudge. Then I had to take a nap because I felt like crap.

I took a big step forward today. I asked someone to speak more quietly and just explained that i was having a touchy day and not feeling the best. I haven't been too good at asserting myself for this kind of need.

I think I now shall sleep for about a week.

Recovery

Last week my therapy session divided itself very clearly into 2 parts. The first half I was so happy about how much better I've been feeling and talking about how I feel better this time, better than I really got from my last big episode.

The second half I cried. Although I am so thankful for feeling better now, I'm still struggling with how much loss there is. I am left with a lot of questions about my quality of life, and whether I would choose to continue this if I had a choice besides suicide. Would I treat cancer? I truly don't know, and I lean towards no. It's a weird thing to think about, and yet it comes up as my brain and body are healing. I still need to regain energy, and my cognition still throws in roadblocks from time to time, but this is really the best I've felt in so long. And it is good, but it isn't normal. It's not what I want for a normal lifespan.

I'm not sure my therapist fully understand what I was saying. Or he just didn't know what to say, since he said the same things to me that I always say to my patients who are talking about wanting to die.

Somewhere in there he asked if I'd had a mood swing or just sad thoughts. I didn't know. I think I guessed, but it bothered me later, because I realized that it actually was a mood swing that had stayed controlled. It dipped down and a few hours later recovered.

I'm not used to this. I've noticed the same thing happen a few more times since, and it feels so odd. I already feel odd because for the first time in years, maybe ever, a major episode has actually corrected to about the same as before. In fact it's probably the same or better and I'm not giving it full credit due to side effects of all the meds. I'm still popping out with words that are not what I mean at all when I'm talking and I still have to think about time orientation a bit, but really those are small things.

Regardless, life has given me a great Christmas gift this year. Hooray!

Joy to the World

Today was the best day I have had in something like 10 years. Really. I am feeling so good on these meds. I am taking 28 pills/day plus a powdered laxative mixed into liquids right now and I don't see a lot of chance that will be decreasing anytime soon. Some of those are vitamins and minerals and I actually need to add another to the list of those; I want to try natural cholesterol treatment first. Oh, and I'll have 2 additional anxiety pills as I transition back to work. I am literally taking a months' worth of pills every single night (and day). So by the end of next week I will more than likely be taking 32 pills/day, plus the powder. Some of this is because of taking oddball doses; I need to be on 40 mg of imipramine, for example, and it only comes in 10, 25, and 50s, so I have to take 4 10 mg pills.

It's even more amazing that this is what works for me when you know that I refused meds for a long time. I was so opposed to meds that I didn't even take tylenol for headaches unless I was dying. Finally my senior year I became depressed enough to agree. Unfortunately things between me and the antidepressants were unfriendly from the start. Even when I started bipolar meds and knew I was going to require several meds I fought against adding more. When lithium tremors made me shake constantly I refused to try Inderal to stop it until it was so bad the doctor practically forced me to try it. Now I probably need to revisit Inderal but it makes me tired so I'm just not using glass dishes and hoping for the best.

The trick is that after trying for years we may have finally gotten to the intricate mix that helps me. I imagine that over the next months I'm going to learn to monitor my seroquel dose. I don't have a ton of leeway with that as I am at 650 and my doctor won't let me go higher than 800 in conjunction with the high dose depakote, but as long as a lot of increase isn't needed over time (the most common way I've failed meds) this may let me start talking about that "stable" word I asked to not talk about. It's weird because I'm suddenly realizing I'm going to have to re-learn my disorder. If I truly am going to stay this good and my cycling is going to occur in this newer and slower pattern I am going to have to figure out what the new way feels like.

Since increasing my thyroid med I have literally felt better every day. My energy is coming back. My hair looks healthier. Today my mother noted I looked healthy for the first time in months. I may talk to both of my doctors about trying thryoid as my next line of defense now that we've seen a major improvement that is pretty clearly due to it and high dose thyroid meds can help sometimes.

I just can't believe what it feels like to not be falling apart. My major symptom now is just low energy, and I think that's going to improve. I'm restarting very low dose Provigil tomorrow to see if I can tolerate it. Fingers crossed and knocking on wood simultaneously....

Today was just great in that I felt good and good things happened. Over the past month I've been more and more aware of an increased tolerance for crowds and noise. I can even listen to music (certain types) and I literally turned my car radio off to music 3 1/2 years ago. I'm not choosing music now, but it isn't chasing me out like it used to. I can even sit in the main waiting room at the counseling center, where music is used as white noise.

I can't talk about the biggest good thing yet. It's 99% likely, not completely. Keeping this secret is going to KILL me for the next 6 weeks. It's making me a little bit bubbly I'm so excited. I'm barely able to not tell everyone what I got them for Christmas, much less keep this MAJOR thing secret. I got my mom a really neat sea glass pendant and chain and it has killed me to not have given it to her.

The smaller good thing is that I called into my disablity insurer's phone service center and another huge check for 4 weeks and 1 day was mailed to me yesterday. So now I'll just have to worry about fighting one more time after I go back to work to get paid for the final 4 weeks. What a process.

If America has an obesity problem why can't I find clothes?

Today was a pretty limited day thanks to yesterday's oral surgery. I've done pretty well with pain; I had Vicodin at bedtime last night and again at 6 AM. I made it all day with a dose or two of tylenol and sticking to easier to chew foods but it's pretty sore now so I'm waiting for another dose of Vicodin to kick in.

I did go out for a while. I had my hair cut (yay) and my stylist showed me how I've got lots of little hairs starting to come in where I'd lost hair previously. Then I ran to the mall for 15 minutes. I had promised my mom I'd pick up some soap at the soap store (Bath & Body? something like that. You know it. The chain. I never remember the name). I wound up buying 9 bottles of hand soap because it was 3 for $10 and I had a coupon for spend $30 and get $10 off. Good deal.

And then I did the hard thing. I found a sweater for myself.

I am not kidding when I say that NOTHING fits me anymore. I've always been at an awkward pants length because I don't feel petites are quite long enough but regular is generally too long. I usually go with regular. Now I can't even find clothes that are proportional. I have my weight all around my middle. My butt is not evenly affected, making pants that fit at the waist sag. I have a small frame so if things are cut too big in the shoulders the neckline will be too big. However I have fat on the backs of my arms so my sleeves need to be loose.

I'm in this weird neverland between so-called "women's" sizes and normal clothes. This is made even worse by my having a lot of hang-ups about clothing and wanting it to be looser than it was supposed to be. I just don't have that comfort in my own body. I didn't when I had 6 pack abs and I don't now.

But what I don't get is what happens if you are short and chubby in this society. Do you lose the right to look nice? Because I can say for sure that the clothes Kohl's offers in the women's section are not as nice as the regular clothes. Nor is there any selection.

To add to the insult even more, stores seem to think if you're fat you don't want to dress like other people. I find this positively idiotic; I can't even find sweaters that make me think "wow, I really like that". Why can I not find plain, tasteful clothes?

Learn from my error, lithium takers

When you take lithium, iburproferon is contraindicated. For one thing, know that if you take lithium. I've had doctors not think it was important, but it is because it can raise your level. That's ok if your level is low and the ibuproferon only raises it a bit, but to me it's a risk to assume that. In my case I must have a very low lithium level so that makes ibuproferon a no-no.

Today I had a temporary crown placed. I knew it was going to be challenging because dental work is very hard for me due to an enhanced gag reflex, difficulty sitting still, noise sensitivity, etc. In summer 2006 I did a marathon amount of dental work over the course of a week and this tooth was repaired but continued to hurt, indicating it was cracked. Unfortunately it was way in the back so that it was even harder to have it worked on.

I was supposed to do this in Sept. but couldn't due to mania. I finally decided I was ready and I did great. I took one anxiety pill on the way and then another before we started because the anesthetic contained epinephrine and the reaction to that was pretty unpleasant. They said that was generally true and I assume that since we try to prevent me from experiencing anything of the sort that I got an extra jolt. Anyway, that made me fairly sleepy.

I did great with the drilling. I gagged a few times with all the impressions, but considering that gagging has stopped us from continuing even cleanings before this was pretty good. The fact that I was able to sit still with 2 people right in my face was a good sign for the bipolar.

So then I went to leave and was given a "crown packet", except they took out the ibuproferon since I couldn't take it. Here's where you should learn from me: ask for something else. Twice now in my bipolar career I've had this happen: I can't take ibuproferon so they tell me to take tylenol. If something is painful enough they are handing out 800 mg ibuproferon, tylenol isn't going to cut the pain. Fortunately I have a bottle of Vicodin that my family doc gave me a while back, so I took some of that, but really I should have gotten a couple of them from the dentist. My situation may be more complicated by having an allergy to codeine (it certainly makes doctors who don't know me think I'm drug seeking), but regardless, this afternoon I've hurt quite a bit that was unnecessary.

More than I thought I'd say

Normally I try to stick to links that reflect the fact that this blog was originally set up to be a way for college students at my alma mater to see some of the reality of living with bipolar. I graduated from a very strict Christian school, and those students may be highly offended by certain philosophies of life. They also have things that are deemed inappropriate blocked; once an email I sent there that merely mentioned Mastercard was blocked. They have tight security and safety controls.

Personally I'm willing to read blogs that include more "interesting" language from time to time. I think it is part of operating in the real world. Besides, the truth is that when I'm manic my own language is somewhat questionable at times.

The main thing I want to avoid is having bipolar patients or any mentally ill patients come across as the bad guys on this blog. One of the things that was unbelievably hard was coming to terms with having severe depression on a college campus where many people consider mental illness a sign of sin, of weakness of character. I was judged, sometimes harshly, by both students and faculty. This went so far as to my having to go to the dean of students because once, when I was in the midst of a depression that I avoided hospitalization by having 6 hours of counseling plus 2 hours of support group/week, my therapist was out of town, and my father was arrested, I was out of control upset and asked for extra time to prepare from a sociology professor. I was far too upset to take the test, even though I knew the material. He gave me a lecture about being weak. Another time I received a package, which is a big deal in college. The package contained a tape of a conservative pastor giving a sermon about not feeling sorry for yourself. I never learned who sent it, quite possibly because I was so furious people were afraid of me. Whomever it was had lied to the place it was sent from and said they were me.

I had a severely abusive childhood and have struggled with mental illness since I was 14. Yet much of that I have moved past. One of the hardest things I have ever tried to handle and which I still have a long ways to go in not being hurt by is the loss of my best friend. After I was diagnosed in 2002 I was going through a lot of adjustment and med changes, and trying to resolve that my whole life was going to be different just based on 1 hour on Sept. 9. My best friend decided that I was struggling because I didn't have enough faith and wasn't doing things the way she thought I should. She actually got a group of people from her church, people who hadn't met me, to vote on whether I was acting "Christian enough". It took me until January 2003 to tell her that I never wanted to speak to her again. Even now I am not healed from that loss. I have several reasons to prevent me from going to church; one of them is that I simply couldn't handle being judged ever again.

So that all goes to say that there are plenty of blogs that I read but don't necessarily link to because I don't think their content meets the standards I need. In general, you swear, you're out, even if that's extreme at times.

But today I'm going to link to one. The actual blog is an incredibly popular one which I pop by from time to time because the author is incredibly honest and open with about her struggle with postpartum depression and anxiety, which led to hospitalization a few years ago. She is a former Mormon and I make no promises that anything on her blog won't contain some salty language, sexual content, etc. But the actual thing she wrote is wonderful.

It is exactly accurate and honest, in a world few people are willing to say "I am Just Me (insert real name) and I am bipolar and I take antipsychotics)".

So please, check out this writing.

Constipation

This is a post I've hesitated over posting because who really wants to think about this? Yet as most of us know psychotropics very frequently have a side effect of constipation, and for me it became a major, I-may-have-to-stop-if-you-don't-help-me issue a couple months ago. So, in the interest of having relevant information out there for those who might benefit from my experience, here is my discussion. Feel free to add.

First off I must explain my thinking until 2 months ago. As you know, I work with the elderly. Earlier in the 20th century and in the years before that people associated a great deal with bowel health. Many elderly people believe it is vital to have a bowel movement daily and that any change in bowel habits or in the stools signifies trouble within. They often are very pre-occupied with bowels and almost superstitoius about bowel health, control, and routines. Therefore I've spent a great deal of time in the past 7 years explaining that it is ok if bowels don't move daily, that the nurses follow a protocol in the case of constipation and so I can't go get them a 20 lb. bag of prunes, sorry, etc. I've seen some people severely addicted to laxatives, and swore that would never be me.

At the same time I've seen people who seemingly were stoic beyond belief about constipation. I remember one woman who had hemorrhoids so severely that we thought she had rectal prolapse and had the nurse check her. I can't imagine the pain that woman was in.

Psychotropics have always had some effect on my digestion. SSRIs gave me diarrhea. I was on Zoloft for some time and that was part of why I quit. Remeron, which I took for quite a while, was constipating but just annoyingly so. And over time I learned that most of the time that would be the case. Depakote wasn't exactly easy to handle, but I was able to go several times per week, which is all that one needs for good bowel health.

Then came Seroquel. It was ok at first, but in mid-October I realized things were changing. I was uncomfortable, my belly was distended, and now I was learning about hemorrhoids. All of a sudden having a bowel movement was blindingly painful. At first I looked at my diet. I'm usually pretty good with fiber but in the past I've had to really force it a few times. I started counting grams per day and adding flax seed to everything that I could. I got a supplement powder, but it just gave me stomach cramps that left me crying in pain. I also started a stool softener and soon was on a large dose of that.

After a few weeks I gave in and took a laxative once. My belly shrunk a few inches and this time I started off prepared. I started eating a handful of dried apricots daily, continued with flaxseed sprinkled in cereal and on sandwiches and anywhere else I thought it was hidden, along with eating tons of salad and beans and high fiber bread.

It didn't really work. Soon I had a distended belly again. It hurt to bend over to tie my shoes. Sometimes I couldn't bend that far thanks to my big belly. Nothing I was doing helped. The only other real solution was exercise, and while I'm trying to do a bit of that, I'm still gradually recovering from being so sick that a fairly strenuous workout is pretty minimal exercise.

So, I did what I had to do. I got a prescription for a drug called Miralax. I told the doctor I'm afraid I'll be stuck with it forever and he told me he can't promise that's not true, but this stuff is gentle and well, truthfully I don't have much choice. I can't spend my life in pain. I never knew how painful constipation can be. Even with the new drug I keep finding myself afraid that I'm going to face that pain again.

I learned a lot from this experience. I know now why my patients fear constipation so much. I understand how one decides medication is the lesser of 2 evils. I learned I don't have to suffer in a way I have suffered at least somewhat for years.

So, there it is: the Just Me lesson learned. Don't let side effects ruin your life. It's not worth it.

Twofer day

I have another post and then I'm really going to bed. I just discovered something.

Remember when I had an OT evaluate me for work skills? Well, I met with her and she verbally told me what her report said. That was in mid-August. One week later my sleep cycles got messed up and 3 days into that I was very, very manic. About that time I met with my rehab counselor to go over the report. However, it didn't sink in.

This report says I can do my job very well. It specifically says that most of the problems she observed were in the attitudes of my co-workers. It is so emphatic about that point that I'm going to quote it: "In summary, Just Me is a good occupational therapist with many valuable skills and abilities. This therapist believes the problems Just Me is having are as much a product of the demands of her current job as they are with any limitations her diagnosis might impose."

I had no idea the report said that until I just re-read it. I don't even care if it's true, that's a beautiful thing to read.

Psychiatric visit

What a day. Let it suffice to say that my location relative to where I am treated is bad, bad news in the winter. Last year (my first traveling so far) it snowed every single weekend I traveled there. Today did not disappoint, and my typical total of 4 hours driving was more like 6 1/2, with most of it at 40 mph. I am sooooo tired. I got home and was shaking so hard I could barely eat; I think my blood sugar bottomed out because I didn't eat anything all afternoon. Usually I eat a snack in the car but I was scared to let go of the steering wheel.

On the good news front I am doing well and don't have any med changes to contend with. Well I guess there is one, but it's not really a change. I'm going to attempt to slip Provigil back into my life. I have to be ultra-responsible about it, but without it working is nearly impossible. Provigil is the difference between starting work in the morning or afternoon. The truth is that I used it irresponsibly last summer. I was combining it with too much caffeine. This time around the caffeine embargo is on. I'll have to carry in a cooler every day with drinks because the pop machine where I work doesn't have anything decaffeinated (makes me miss psych where all the patient machines were purely decaf stuff, even juices). I've done that before and it annoys me, but it's better than mania.

On the bad news front, a few labs are off. I had a baseline cholesterol panel done since I've gained a lot of weight between the very high dose depakote and seroquel. My good cholesterol is better than great. My bad cholesterol is in the problematic zone. That lab was already scheduled to be re-drawn in March. On the more frightening in some ways plane, one of my liver functions was elevated. It was not high enough to be of concern and at this point we just wait and see, but it's a bit scary, simply because the way to correct it if it goes higher will be reducing the meds, and I feel so much better on this cocktail that I just can't stand thinking it might slip away. I can see actually being stable on this in a few months. I'm not sure what makes me feel that way, but I do.

The other thing about the labs is that I go to a major psychiatric hospital, one you'd have heard of. My doctor is on the permanent faculty, so she is involved with many patients on some level (resident supervision, etc). She has also discussed me with her department, so that means she's pretty aware of how unusual my combination of meds is. High dose depakote and high dose seroquel are just so sedating and have so many side effects. But there is me and one man, who is on a slightly higher dose of Seroquel (he's maxed out at 800 mgs).

He got liver functions back with the same one as me elevated high enough they had to lower something. So hopefully I'm not going to follow in his footsteps. I'll know in a few months.

I'm starting to fall asleep sitting here so I guess bedtime is upon me. I hope to sleep for a very, very long time....

There has to be a limit

In the last 20 months I have had many blood draws. I believe in that time I've had 20-22 draws, a majority of them just for Depakote but many for other things. We've been trying to figure out how my body processes Depakote, something that is seemingly beyond explanation. Increasing my dose sometimes increases my levels as expected. Sometimes it lowers them by a lot. That's not the plan. Ultimately I'm just on as much as my body can handle so it doesn't matter. I am currently doing ok with sedation but am pretty sure we won't be adding anymore for a very long time.

Last February I kept waiting for my doctor to respond to a request to help as I rapidly sank into a deep depression. I was getting mad at her for ignoring me when finally I learned the cause of the issue: she hadn't received the lab. We did some calling around, and the hospital I had gone to had to outsource the lab. The lab that was supposed to process it had received a paper with the orders but no blood. Nobody bothered to call and check on that or ask me to get a re-draw. So I suffered severe depression for about 4 weeks thanks to their error.

Last week I saw my doctor at a new office. I had to get blood done for a good 10-15 tests and I thought the number of tubes drawn wasn't right compared to when this has been done every 6 months for years, but I figured I didn't know what I was doing. Today I got a call that they are very sorry but two tests required blood in a different type of tube than was used and I have to go back. To make it worse, one was my lithium level, which has to be drawn 12 hours post taking it, and the doctor is an hour away. This means I'll have to very carefully plan a trip to get it done. Yippee.

On the plus side I was really wondering if it would ever happen, but the medicine I got for my side effect that I've talked about before and which should stay personal if you aren't shameless like me, seems to have kicked in. I'm finally not 100% uncomfortable leaning forward. I swear that just today my jeans are fitting more loosely. Be interesting if my theory is true and my preferred pair of jeans (like the fit) are no longer too tight in a few days.

Nonetheless, can you believe, two major lab errors in a year?

My vitamins had been opened by my brother-in-law accidentally and nobody remembered to tell me.  So that was good.
 
Now my issue is that I'm kind of having excess anxiety.  I'm dog-sitting at my mom's and was fine until I got 2 calls from the prison.  I talked to the caller the 2nd time and it was a staff person on behalf of the inmate, but the number the inmate was trying was correct. 
 
I realize I'm safe from him since he is clearly in jail, but it reminded me of several rather scary crimes in this area lately, and this house is very isolated, and so now I'm scared.  Lovely.

---

Your smile counts. The more smiles you share, the more we donate. Join in!

Sometimes my luck scares me

Last Sunday I bought a bottle of the vitamin B complex that I must either take or develop sores on my mouth. I developed a deficiency from the vomiting associated with months of lithium toxicity and the sores are the result. I then forgot the bottle at my mom's house.

I ran out of the supplement during the week but didn't replace it since it is a bit pricey ($7, but that's a lot right now) and I knew I'd get it today. I did get sores on both sides of my mouth, so I needed it.

Tonight I opened the container and there is no safety seal in place. I can't find the receipt, so I'm out $7 and have to drive somewhere to get a new bottle tomorrow.

This does not please me......Yesterday I spent $20 on bowel meds, now it's $14 on my lips.

Sheesh.

Time for hibernation

I went out to Walmart and the (gulp) mall today. I needed 2 things at the mall. One was a winter coat and I had to think extra about the cost, so I actually went to the mall twice for very short periods. It was really crowded and very loud.

Walmart.....was incredibly awful. You couldn't move. I got a cart with a bad wheel and I can't even begin to guess how many people I nearly smushed. Again, so, so loud. I am pretty sure half the county was there.

I went with a list, which was good because it was so loud I would have gone into shutdown mode and just stood still, unable to remember what I needed. As it was I was quite effecient. However I had to get 5 prescriptions so I had to be there an hour.

I was so impressed with the pharmacist. After the mess I had with the pharmacist yelling at me about Depakote last month I was a little hesitant. When I picked it up the pharmacist there pulled me aside to make sure she wasn't giving me an overdose. THAT is a pharmacist doing her job. I intend to make both Walmart and Riteaid aware of this.

The good news is that I have completed all Christmas shopping that needs me to leave this house (I have one gift to get for the hardest person on earth) and even have 75% of my wrapping done. Unfortunately I've let myself leave the big packages for last and I'll be sorry. My wrapping skills aren't so great what with hand tremors.

But anyway, it all means that I can forget that Christmas is coming for the next few weeks. Which is probably a key to surviving it that I've never had before.

We'll see.

Yay

I got a call from my doctor's office today. My thyroid test came back already and my hypothyroidism is worse. I start a higher dose of medication tomorrow.

I am so happy that this was the result. It is something wrong and it can be fixed. It means that many things I've called "side effects" and "depression" may well be physical and correctable problems. It means in about 2 weeks I may have enough energy to get off the couch.

In looking at the list of thyroid symptoms I realize I really should have considered this. I have every single symptom, from head to toe. I have always considered hypothyroidism a secondary condition. Apparently that needs to change.

Tomorrow I have to fill 5 scripts and pick up two OTCs that I take routinely. Thank God for insurance.

Wow, you're on EVEN MORE MEDS

You know you live a strange life when you come away from the doctor happy that something might be wrong.

I saw my wonderful family doctor today. (I realize I have a tendency to say all of my doctors are great, but that is only because I've put a lot of effort into that--I firmly believe in team treatment and all 3 of my doctors treat as a team. The family doctor and my psychiatrist are fabulous with sharing; he calls her if needed and she always takes his calls. Etc. And if it helps at all I'm pretty mad at my psychologist right now). The title is the first thing he said to me. Anyway, it was neat because he'd talked to the nurse about me before I got there and said some nice things. I got complimented on my compliance and attention to detail and for a bipolar that's some good stuff.

Anyway, my thyroid, which was damaged in last year's lithium toxicity adventure, may be messed up again. I missed a lot of doses of replacement meds at the beginning of this episode and took a while to get back into managing it properly. He was able to feel enlargement, which is new. Thyroid issues would also explain many of my other problems that have been attributed to depression. Obviously it'd be a combination of the two, but if my thyroid levels are screwed up then in another 2 weeks I might actually have energy. I might even get to lose some weight.

I also finally got meds for constipation. I hate that route, but the colace alone isn't nearly enough and I can't go through life uncomfortable and unable to bend forward. I also learned that Splenda's off-label use is for constipation. Enough about that.

So, all in all, I learned that I'm a freakshow patient who the doctor remembers in insane detail because he's never seen anything quite like me. ("I've never seen anyone on 3000 mg Depakote who is, well, awake!" "And, I've never seen anyone on that much Seroquel". "Together, wow.")

That's me. Wow girl.

Post 400

Seems unbelievable that I've been doing this long enough to have posted 400 times. For something I didn't want to committ to doing I've done pretty well.

Today I woke up in the morning, on my own. That is huge. I did drift off again but I was awake for over an hour. Tomorrow I have a morning doctor's visit, so I have to get up rather early. I hope that works. It's hard because I have to get med levels done tomorrow, so I can't take my pills until a little later than usual, but I need the sedation earlier. Such a balancing act. (Darn my doctor for moving to the city where blood draws are harder to get anyway).

I woke up to a very pretty snowfall. I get to say this since I can stay inside (or not) per my choice. I also have the blessing of simply not being very affected by snow. I went to grad school in one of those upper midwest states with lots of lake effect and I had a tiny Ford Festiva. I will never forget the first time I saw what one of those storms can produce. My friend looked in my closet, determined I wasn't prepared, and took my boot, hat and scarf shopping. Oh, and also a shovel and a really, really nice scraper/brush thing that I still use now. The year of my clinicals I had to drive about an hour on backroads to be at the school I was in by 8:00. Sometimes I did that with 24 inches of snow and a layer of ice. Things rarely closed there, and what was considered a "treated road" was quite different than where I learned to drive. I still get flashbacks from once when an SUV pulled out in front of me intending to go the other way. He started sliding in circles while I tried to gently slow my car. Somehow we slid around one another. Anyway, I learned to drive in the snow that year. So now I like days like today.

I have had several things on order, so I went to the post office because I was anxious to get them. Everything was there. I am so excited because I orded my mom a little sea glass charm off Etsy and it arrived. It is gorgeous. Absolutely tiny and perfect and gorgeous. I cannot wait to give her this tiny little gift. It also is a cheap gift, making it that much better. I also was thrilled because I got various family members personalized dog collars, all of which arrived today. Only thing is that one of them I accidentally apparently requested red lettering on pink which isn't that gorgeous, but whatever. Works for Valentine's day.

So now I'm going to just enjoy the rest of the day. I think tonight will be a homemade pizza dinner, and a little gift wrapping. I also need to wash clothes. That's good though because it helps warm the house.

So, all in all, a good day. And that is said with peace, because it is time for good days.

Status Quo

Not a lot is changing. I'm still fighting with my disability insurer. They are simply not going to pay until they see another psychiatrist's note that validates a previous 4 week period of time. They refuse to admit that individual fluctuations occur. I am going to try verbally again but I'm probably just going to accept that I won't get another check until after my next pscyh visit in mid-December. By then I'll have had a ton of labs and stuff done, so that means I will also have to send in all that. I can't tell you how thrilled I am about every bit of personal information about me being in the hands of my insurance. They will hae much more than even my health insurance ever has.

I'm frustrated tonight because the additional documentation to be sure everything is included in the note took up my session and I didn't get to talk about something I very much wanted to talk about. We'll talk about it here as well but I need to do it in therapy first.

The very good thing is that not a lot is changing. My mood is leveling out. I'm starting to have active times daily. My sleep is cutting back a little. I'm able to cope with the insurance. I even managed to schedule a dental procedure I've been putting off for months. I can't wait for the end of the toothache.

My cat is here telling me that I have not fed kitties in at least a week. Not true but she's convincing so I should feed her.