[amaviena]

dysphoric and small. I won't say a word. I'm afraid.
trigger: mom screaming, yelling. can't do anything about it. not allowed to leave, but no where to go.

worried about money.

this needs to stop.

[Trying & Caring]

So sorry--keep yourself safe. Take care.

[thinker22]

I shut down when people scream, whether it's at me or someone else or I'm given terrible news.

Don't forget, if things get too bad, you always have the hospital. I hope you can calm down and get some sleep tonight. It hurts less after you've cried and time has passed...at least that's what happens to me after someone else yells. I kind of get this blank look on my face and can't stop staring at nothing. I guess that's catatonia, but no dr has ever seen it happen to me.

[amaviena]

much better today. in the event that anyone wanted to know. sleep now.

[thinker22]

I'm glad you're feeling better. Thanks for the update.

Mine is this: I'm up to 150mg of Lamictal now...for 2 more weeks. Not sure if it is doing anything, but I'm still trying. Going to try to get some sleep too via the two pams (temaze and loraze)

[amaviena]

Pam rocks. I just take a klonopin with my pills so I can calm down enough to sleep, but back in my monotherapy lamictal days I had my sleeping pills

[thinker22]

Ah, good ol' clonazepam. Makes me wonder why, if Lamictal is supposed to make you drowsy, do you need sleeping pills on top of it to get and stay asleep? I got 6.5 hours last night, but I feel like ****. I did work today, but still...I could fall asleep in this chair and I've had nothing...not alcohol, not lamictal, not the sleeping pills.

Sometimes I'm mad at my body...mad at my brain that it won't let me lead a fulfilling existence on its own. I know my attitude about the whole thing needs to change, but I'm still debating whether I'm ill or just moody. I totally fit the profile for bipolar, but I hate the process of getting "well." It's not like my depression, mania, or suicidal thoughts are going to go away by moving again or traveling (my typical "solution"). Too drowsy to make any sense right now.

How you doin' today?

[amaviena]

I feel okay. Glad you're still here too. Not well enough to stray too far from bed today. Bipolar, the physical illness. I never got that pamphlet.

[thinker22]

I know, even before I was on meds I'd go for weeks of hypersomnia, my bones and joints aching and I didn't want to get out of bed. When all my tests came back "normal" they suggested my symptoms were in my head. Um...NO...they're in my body. Why can't you just say your brain chemistry may be leading to these physical symptoms? Is there no nice way to put it? Because the pain is real and the fatigue is real. I didn't create it. I didn't say,
"Gee, I think I'll sleep all day long and have sore muscles and joints. That'll be fun. I'll miss work and have to drop out of school AGAIN."

Whatever. We patients ought to write a hand book for new doctors for all of their patients, including the mentally interesting. All the cliches they shouldn't use and terminology that belittles us or makes us feel somehow flawed or lazy or weak for having a genetic disorder compounded by ****ty things that have happened to us. I'm no victim, mind you. I intend to be a success no matter what the cruel or idiotically "devoted" did to me.

What I'm saying is, we should write the pamphlet. For real. One for bipolar people and one for the doctors who sometimes encounter them. We should compile suggestions from everyone on the site. Not sure where we'd post it or have it printed...but it would be cathartic to create it.

[amaviena]

lately, you're one of my true loves, thinker. I agree about this pamphlet idea. Sounds fabulous. Maybe I can come back to this today.

[thinker22]

Now hear this...we are going to write a pamphlet to retrain doctors how to deal with their bipolar patients.

1. Don't call us "mentally ill." Ill is synonymous with sick and we are not sick in the colloquial version of the term. (eg., You're sick. You need to get some help, you freak.) People use "sick" or "ill" as a term to belittle us when we're feeling uncomfortable in our own skin and truly want to feel better.

2. Don't assume we don't know what you're talking about. Most of us know all of the psychotropic medications better than you do, unless we are recently diagnosed. We know SSRIs, SSNRIs, atypical anti-depressants, anti-psychotics, anti-epilepsy, mood stabilizers, etc. We also typically know what kinds of drugs work for us (or might work for us) and what kinds don't based on extensive previous experience.

3. We know our body better than you do. Just because the drug fact sheet says most people get drowsy so prescribe dose to be taken in evening doesn't mean it might not make some of us hyper or even manic.

4. LISTEN!! I cannot emphasize that enough. If we're having a bad reaction to a drug, don't tell us to wait. Either change the dose, take us off of it, and/or replace it with something else.

Your turn someone else.

[thinker22]

I guess this got lost in the pile. I have another one to add and hope other people will still add more.

5. Just because we're bipolar doesn't mean we can't have normal days, or heck, good days and bad days without any of them being an "episode".

Shoot, if I believed the mood tracker on here I'd be only in a manic or depressed episode all the time. I just plain old feel good sometimes without being a danger to myself at all.

[amaviena]

6 Every second of my life is not a symptom.

[BNLsMOM]

Originally Posted by thinker22

Now hear this...we are going to write a pamphlet to retrain doctors how to deal with their bipolar patients.

1. Don't call us "mentally ill." Ill is synonymous with sick and we are not sick in the colloquial version of the term. (eg., You're sick. You need to get some help, you freak.) People use "sick" or "ill" as a term to belittle us when we're feeling uncomfortable in our own skin and truly want to feel better.

2. Don't assume we don't know what you're talking about. Most of us know all of the psychotropic medications better than you do, unless we are recently diagnosed. We know SSRIs, SSNRIs, atypical anti-depressants, anti-psychotics, anti-epilepsy, mood stabilizers, etc. We also typically know what kinds of drugs work for us (or might work for us) and what kinds don't based on extensive previous experience.

3. We know our body better than you do. Just because the drug fact sheet says most people get drowsy so prescribe dose to be taken in evening doesn't mean it might not make some of us hyper or even manic.

4. LISTEN!! I cannot emphasize that enough. If we're having a bad reaction to a drug, don't tell us to wait. Either change the dose, take us off of it, and/or replace it with something else.

Your turn someone else.

I agree! I keep a journal which says how many days I have been on a med. I am now on Day 60 of a med that I have been begging to have changed since it dropped me into a depression on day 15. I have since run the gamut of moods including the nasty mixed episode I have been in for at least a week but I suspect longer. It's not my fault that I have to go to the ER tomorrow and be embarrassed that I have to explain to everyone who knows me, but doesn't know about the bp that I am in the hospital again.

I hope they don't admit me for the above reason, but I have had so many bad days lately that I think they will, which is OK for my safety.

See? Mixed! I can't even make a coherent statement!

[BNLsMOM]

Oh,
7. Don't make us wait 100 years for an appointment when we say we think we might be in danger.
8. Don't go on vacation and leave us hanging on the edge of a cliff with lions and snakes waiting below to devour us.

[thinker22]

Amen to that!! There should seriously always be a backup psychiatrist in each office...an apprentice or whatever familiar with all of the cases so that if the p-doc does go on vacation, they can just phone back and forth if it's too hard for the backup to handle. But they should not leave us with the only choice of going to the ER!! That's part of the reason why health care in this country is so screwed. Even for those of us who have some insurance. Some of us avoid at all costs going to the ER (duh, like it's fun for us to pay hundreds if not thousands of dollars when we'd rather be at home), but it's our only option, especially in a psychiatric emergency...that could be solved probably in half an hour if our p-doc were available.

I'm no doc, so don't listen to my advice, but I was on Seroquel for months and then for 2 weeks things got so awful I went to urgent care, barely able to walk. Docs there told me it was probably one of my meds since the blood test was neg for anemia. I knew it was Seroquel. I went off of it after the 3rd week that p-nurse wouldn't listen to me about feeling severely depressed.

Ever since then I've felt pretty darn good...some half days that were down, but all in all, fairly hypomanic. So, as with all things, if you tell your docs that something is making you feel awful and you want to come off of it, and they disagree, do so at your own risk, but do it VERY slowly and cautiously. And I don't necessarily think you should. I just had a good response to coming off of my bad drug, but I know the docs will say it's causing mania and that is bad. Blah. Can't win no matter what you do.

[BNLsMOM]

I don't dare, because it is the only mood stabilizer I am on. I would be afraid of what would happen without any safety net at all, however, I agree that this med is doing about what eating a plate of poop would do for me. Pretty much nothing but leave a bad taste in my mouth.

Bad, bad anger going on here... almost refused my meds tonight and almost refused to go to the ER ever because I have no one to take me tomorrow because my husband is being wimoy to his boss and not telling him what he needs to do for his wife.

I said that I am fine, with no issues whatsoever and I don't need any care at all. I am irrational and deluded and losing reality, but posting seems to help because I can take a step away and evaluate what I am saying. Unfortunately, being irrational makes husbands get angry and go to bed when you want them to stay up with you.

I am too scared to go alone but I have to go tomorrow.

Anyway, I forget what number we are on for the pamphlet, so we can add what I just said as a personal but anonymous testimony to the lack of care we get unless we are bleeding from the eyeballs.

[thinker22]

I have nothing to add to that. It sucks beyond expression.

(but of course i feel compelled to)
***Possible trigger warning****

If I didn't live behind a hospital, I'd probably be constantly insecure about my moods getting out of control. True, they have no psych unit, but anyone can be transferred from there to one that does about 8 miles away. It's an impossible dilemma if you're broke and underinsured. (and it's wrong for me to probably say so, but i'd do what you are doing if I had kids). Like you, I don't care much about me anymore, but I wouldn't want to hurt my SO who I dearly love...and if I had kids, I would totally freak about what would happen and leaving behind that ? mark forever in their minds.

I'm glad that one way or another, you will get yourself well, even when people are not being terribly helpful. Why does it feel like the professionals are often an obstacle to our getting well? Argh. In the future they'll have robots to do their jobs much better. Little blood sample, little dna computer spew out diagnosis and the exact right med for your chemistry, diet, and exercise regime. Problem solved.

Keep us posted.