Spectrum

This is in response to Emilijia's response to "Is this bipolar?", which I can't link to because I'm away from my own computer. 
 
I think our wires crossed.  I know that bipolar is considered a spectrum illness.  My point is that I don't believe it is.  I do not believe that someone who is sick part of the time and doesn't even need meds much of the time has the same illness I do.  I do not believe it is the same illness to be able to be diagnosed and never have a time that life is thoroughly disrupted. 
 
I am in a somewhat unique position maybe though.  For many years I was diagnosed as depressed, even though I had features of bipolar.  I went YEARS without sleeping hardly at all.  One summer alone I should have been diagnosed, but I lied to my therapist about it and about how I had felt.  I had huge mood swings, but excused them.  When I FINALLY gave in and admitted I was bipolar I was diagnosed as bipolar II, rapid cycling.  Later I was seen by Dr. Bipolar Guru and severe bipolar II with ultra-rapid cycling became the diagnosis.  About 6 months later I was diagnosed with mixed states, changing me to BPI.  I remember protesting this and Dr. Brain gently explaining. But soon after I started trusting people and talking about some of the psychotic symptoms I'd hidden for years.  Up to then I'd been too paranoid to talk about paranoia.  So I've been all over the spectrum, even though I was BPI for the whole time, and I did not get appropriate care because I was stuffed in the wrong part of BP.  If only I hadn't been I might have gotten an anti-psychotic long ago.  Dr. Mind did try them, and a few worked, but I had scary bad reactions and it seemed dangerous to try more for the low chance of helping.  Too bad the next to last choice worked well enough my life is 100% different.  I really resent the years I didn't accept psychosis.  It's my own fault because I lied to avoid embarrassment and treatment, but again, I think if the only thing bipolar were included the psychosis factor, I would have felt better, instead of feeling like needing that help meant I was the sickest of the sick.  I don't know, I'm not explaining well.  With the sprectrum idea being BPI seemed like I was failing and letting the illness get the best of me when other people didn't.  If bipolar was what BPI is and the other things were something else I would have accepted treatment, and accepted myself, years sooner than I could.
 
I am not putting down the other things called bipolar; I know they are issues in their own way.  I just don't think bipolar I and II or cyclothymia are close enough to be "the same".  I consider depression as an entity a horrible thing, I consider my panic attacks or OCD qualities horrible in their own ways, but it is the mixed episodes and psychotic features of BPI that truly nearly destroyed me.  I probably qualify for OCD.  Barely, but I do.  However, we feel that much of it is sensory sensitivity related, and it is also partially BP related, and anxiety is just a side effect of a terrible childhood for me.  So I don't walk around with that label exactly, although if I NEEDED the label I could have it.  I think we need to calm down about labeling things that are either only partially broken or which function ok despite some differences.
 
I qualify for "pre-diabetes".  That does not mean I am diabetic, so why should "sort of bipolar" be bipolar.  Pre-cancerous skin lesions do not mean cancer treatment, they mean take care of that and be careful.
 
The things now called bipolar spectrum need to be the same:  take whatever meds, be careful, and be glad you aren't really sick.
 
My objection is that it does those with severe forms of the illness a disservice.  "My friend's mother's brother had that and he's fine now."  Or my sister-in-law, she uses bipolar as an excuse for all kinds of misbehavior when she's cyclothymic:  aka more moody than average.

I want to be recognized for what I have:  an illness severe enough to be its own entity.  That's all.

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Random

• Vacation is wonderful.  I've been outside and loving it every day, pretty much all day.  Little tired today, but having too much fun to care.
• As of last week I'm now #2 in my whole company for our weight loss competition.  So excited.  Hopefully I'm burning enough calories hiking around to make up for eating less healthily than normal.
• Yummy Mexican food.
• They think 71 degrees is chilly here.  I wear shorts and a T-shirts and get sunburned and they wear fleece jackets.
• Welcome GCC students.  Hang in there and I'll get back and write normal things again.  Bad timing on the teacher's part sending you here now (I think it's just in his lesson plans).  A post is planned to summarize how I got here, because I've written too much to really expect anyone to go back and re-read it all.  And some is disjointed when I've been at my sickest.
• I hadn't checked my sitemeter for a while.  We're now over 7000 visits.  It took so long to reach 1000 that every time I hit another 1000 I'm amazed.
• That's it for now.  Back home and back to blog at the end of this week.
  
  
  
  
  
  

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Um

My last 2 posts kind of felt good.  I think I said things I really needed to say.  I'm kind of processing some of what the ramifications of the last 11 years of my life have been.  It's not easy.  I lost a third of my life.  And that's not including the years I was somewhat symptomatic but only depressed before that, and some of that depression was pretty serious.  I was first seriously suicidal at 14.
 
But I also may have been excessive.  I don't want anyone to ever feel I'm putting down what they go through.  I'm not.  I know any level of bipolar or other mental illness is painful.  I just am really protesting a (seemingly odd) system where apples and oranges are being called the same thing, and which will probably return to apples and oranges in another decade or so.
 
Part of what I am feeling that may be hard to understand fully if you're on a bad part of this road which may have come across too strongly is pride.  I am SO proud that I have survived.  I'm proud that I've been so extremely ill and now am doing so well.  And feeling that pride is really important right now as I'm trying to figure out how I fit into a world I know nothing about.

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What Bipolar One Means to Me

Please feel free to add in your ideas to the comments (or if you get as carried away as I did, your own blog) on this.
 
Since writing my last post I keep thinking about an extension of what I was saying.  Bipolar isn't just a word to me.  Bipolar is something I live every minute of every day, even while doing well.  Bipolar the way I have it isn't just a list of diagnostic characteristics, and it isn't just a med or two every day.  This may sound negative, and it's not meant to be, it's just that when I read about that author feeling restricted by meds that she takes "when needed" because she can't fly a helicopter, I just don't think it's remotely the same.  And I'm not picking on her, lots of people say and are told they have bipolar.  But it's very different when it messes with your whole life.  However, to make this even, in the next day or two I'll try to do good things about being bipolar.
 
Bipolar is:

• A history of behaviors I refuse to even think about because I've embarrassed myself so many times
• Hurting people I care about because I get moody, I get paranoid, I get very angry for no reason and I go after the easiest targets, even though it makes me hate myself
• Regretting on a daily basis choosing the profession that I love, a profession that required 20 years of schooling and which I will be paying for until I am in my 50s because it is not a good fit with my symptoms
• Knowing that side effects of my meds will keep me from doing my 2nd or 3rd choices of replacement careers
• Giving up my dream/plan of a PhD because I'd fail out of school even with accomodations, and I don't have the energy
• Feeling sad that I love what I do because I know I probably won't do it as long as I'd like
• Knowing that every day, every month I work in my field is a huge gift, because I had promised myself my last job would be the last in this area, but I was well enough to keep going a little more
• Being fired for reasons that were unfair and had nothing to do with me
• Having had more than one job where everyone hated me
• Extended probation at my 2nd job in a row
• 20-30 pills per day depending how sick I am and how bad the side effects are and how stubborn I'm being about them
• Living with the memory of the day a doctor started to call the police to take me to the state hospital against my will, until I finally started yelling with the right professional words to buy time
• Having had more than one fight with Dr. Mind about whether I needed to be in a hospital, something I'm terrified of
• Begging to be considered for electro-shock therapy
• Trying for years to get stable enough to have surgery to implant a device with a 33% chance of maybe helping my untreatable depression
• Finding out how many severe med allergies and intolerances one person can have (7 major ones to date)
• Migraines treated with tylenol because it's all I can take
• Sinus infection after sinus infection because I can't take decongestants and eventually it just builds up into nastiness
• UTI after UTI from a medication side effect
• Cracked teeth from a mediation side effect
• Spending 6 months vomiting from medication toxicity that nobody could figure out
• Crying because the toxicity kept me from being able to talk, to communicate how I felt, and because my memory was damaged
• Out of 8 years and 2 months of employment spending 9 1/2 months on disability
• Having little memory of most of that time
• Having my boss tell me that a contract no longer wanted me, essentially because they thought I was "crazy"
• Having a family at a nursing home ask the administrator if I was on drugs
• Walking around with a tongue like a snake for a month because of extra-pyramidal syndrome
• Having to fight doctors to take me seriously, no matter what is wrong with me, unless I'm very careful who I see
• Being treated like a drug addict because I take narcotics for anxiety and to overcome the sedatives
• Taking meds that have destroyed my thyroid and damaged my kidneys because they are the only way I can live
• Being part of medical research because someone has to so there are effective treatments for this thing
• Having few friends and even fewer who understand at all
• Losing the best friend I thought I could ever have because my illness "wasn't Christian"
• Being unable to have any caffeine.  Ever.
• Being proud because I only saw my therapist 42 times last year.  Two years ago it was 75.
• Having my own bottle of non-alcholic sparkling juice at holidays with wine.
• 4 years of being unable to listen to music
• 8 years of seeing almost no movies or TV shows because they are too stimulating
• Crying in public over nothing
• Gaining 90 lbs on a very small frame thanks to medication, 60 of that in 1 year, 40 of it in 3 months and knowing I have to keep taking the meds anyway
• A time I barely remember when I was so sick and nobody knew what was wrong and I had to diagnose myself and then find appropriate help
• Knowing from experience that some doctors will treat things they aren't qualified to treat
• Having had doctors make me worse, for the rest of my life
• Living with the knowledge that sometimes I'm suicidal and I have to be responsible for telling someone and doing what makes me safe
• Knowing that suicidal comes sometimes from small things, not the major episodes and that those are the most dangerous times
• Being terrified every single time I have trouble falling asleep because it might be the beginning of the next big episode
• Freaking out if I'm sad, even if I have a good reason, because it could be major depression
• Annual out-of-pocket medical expenses topping $10,000
• Medical professionals refusing to respect me even though I AM a medical professional, because I can't possibly be able to think for myself
• 2 hours of driving per week to see Dr. Mind because he's the best psychologist for me right now
• 4 hours of driving per month to see Dr.Brain because she is the best psychiatrist for me right now
• Knowing that if I get sick my short-term disability excludes mental illness because it can
• Living with insurance that excludes mental health except a bare minimum that is nothing if you are chronically ill, even though it is a physical illness and not caused by a bad decision (yet injuries caused by my driving drunk would be)
• Begging politicians in emails to do something about mental health coverage.  Being ignored.
• A week spent on sick leave due to a rash that if untreated can be fatal.
• Half-done projects everywhere because my attention span is limited
• A messy house because I have so little energy
• An inability to work full-time anymore, and I'm only 33
• No chance of having children because I will not pass this on
• 10 years of my life gone to severe illness that I will never get back.  I was a college junior and now I'm this adult who is suddenly coming out of a coma
• So many annual blood draws the plebotomists all know which vein is the good one, and the puncture scars never have time to go away
• A very high risk of diabetes just from ingesting the medication that lets me function
• Two years of being afraid to shower and not be able to hear what's going on, resulting in alternating showers and sponge baths.  Even now having fears of showering sometimes.
• A crappy credit score because I'm just not great at responsibility
• Summer "lockdown" because heat is dangerous with my meds
• Experiencing substantial hair loss from a side effect plus my damaged thyroid, which has taken almost 3 years to grow back

 
It also means some positives:

• More empathy for people with all kinds of disabilities and losses
• As much as I hate to say it, I' much stronger for having survived
• It's the only way I learned assertiveness
• I get to see a real miracle in my own life.  More than one.  I'm alive.  I'm in remission and I had so little chance of this.
• I take little for granted
• I have this blog, and the friends I've made from it
• I know who my real friends are. 
• I appreciate every minute I spend in the sun, every hour in my garden because they are limited
• Doing dishes is a major accomplishment and I know it
• Every so often I can clinically help a patient because of my own experiences
• I have had to be stronger than I ever though I could and I've had to trust God and other people more than I thought possible because when you only want to die that's all you can really do
• I know how to think things through differently.  For example, I have a very effective suicide-prevention method that I created with some help from friends and doctors, and it has kept me out of the hospital, against all odds, for years.
• I shower regularly now, and I know that is an accomplishment
• I never take my career lightly
• I have fewer worries about the future than most people because I just can't go there.  Retirement money?  Hah.
• I don't take my appearance for granted.  I was never really pretty, but being so overweight and having nothing that ever fit right while my hair looked weird because so much had fallen out changed so much.
• I have a lot more self-control than I did even before I was sick. 
• I'm not as sick as it looked like I was going to get not so very long ago.
• I am a symbol that medical advances can help even the people that today can't be helped.
• I've somehow been given the title of my doctor's "highest functioning for the severity of your illness ever" patient.
• I found good medical help.  It saved my life, and I have doctors who are dedicated to me.  The entire group of them work together, showing that the entire medical world isn't irreedemable.
• I never waste money because I have none!
• I'm probably healthier from having no caffeine. 
• I'm certainly healthier from never drinking, not that I did before anyway.
• I'm so much better I'm coming off meds, and I'm losing weight.
• I've proven that feistiness and willpower can keep you out of the hospital, if applied correctly to the right person.

 
There's probably more, but it's late now and I have to sleep.  Should have been asleep hours ago.  Too anxious I guess.  Or manic?  (joke,but see?)

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Is this bipolar?

Back to one of my pet peeves before my vacation begins.

I realize that bipolar is probably a spectrum of illnesses. I realize that bipolar I and II differ. But as someone with severe bipolar I, I question heavily the benefit of calling people mildly affected at the far end of the spectrum "bipolar".

To me, bipolar means that I will always take strong meds. True, I'm finally starting to be on less meds and celebrating this daily, but I earned this through 7 years of nearly losing myself. Only 2 years ago it looked as if life as I knew it (which pretty much sucked as it was) was about to get a lot worse as I ran out of treatment options very quickly. I did get my miracle and now I'm better than anyone ever thought I would be, but I will always live knowing that I potentially could get very sick again. I will always live with bipolar making things harder. Just the effect on my finances alone is very significant. It will always take a toll on my body, on how I even look, how I act, how I feel day to day, and what I am able to do. I'll probably never work 40 hours/week again; it's too much. Part of why I'm doing well is that I only work 32 hours/week. It's a huge blessing that I can manage this, but if I didn't have it I'd be a lot sicker than I am.

Earlier today I was reading about one of my favorite authors, Patricia Cornwell. On her webpage she says she is bipolar. She discusses it in the usual terms of increased creativity, etc. that feels like a bunch of baloney from my still-too-drugged to think as I used to mind. I think a lot of that goes more with BPII. And then she talks about how frustrating it is that when she is on mood stabilizers she is not allowed to fly helicopters.

"When"? My experiences make it absolutely impossible to feel like a version of this disease that allows you to sometimes be off mood stabilizers is REALLY the same thing. And frankly even in my improved state I'm GLAD nobody would let me fly anything: bipolar is not kind to thought processes and reaction times.

I understand that people with these lesser versions still suffer. But I feel like it does those of us with the full-blown thing a disservice to let people think we are in the same situation. We just aren't. There are fewer "truly" bipolar people, and it is very frustrating when so many people think they get what bipolar is because they know someone with a more minor subtype.

I really want them to re-name everything but bipolar I. After all, we used to be manic depressives. The names can change again.

The best laid plans

I thought I would be writing this in a few days.  Life conspired against me though, so here is notification that I probably will be pretty quiet for the next 2 weeks.
 
I'm leaving for vacation in 6 days (yay!).  The original plan was to have today mainly at home to pack and clean, and finish that Saturday.  Then I would move my cats and myself in with my mother until we leave because of scheduling issues, and because it lets my cats get used to being at their temporary home with me.
 
Now I will hopefully have power again soon (it may be Sunday night), and am not sure how the whole thing will play out, other than I'm going to be busy.
 
I may email in blogs like I am now, but this depends on a lot of factors.
 
Regardless, I'm going on VACATION!

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Best thing EVER

I have been on Depakote ER for many years. Depakote itself was generic when I started taking it, but for me it does not work. For whatever reason my body processes regular Depakote too fast and my levels don't go to remotely therapeutic, much less remotely near the very high levels I've needed to feel good.

Today I got a refill of my Depakote and it is now GENERIC! $10!!!!!!!!

Best thing EVER. Ok, maybe not EVER, but best thing today.

Treat

After so many years of not drinking anything from a coffeehouse, Starbucks found something I LOVE. Vanilla roobios tea latte. It's decaff, yummy, and not too high in calories when considered a treat. Which is easy since the nearest Starbucks is an hour away.

I have to say though that I'm really looking forward to a treat after seeing Dr. Mind Thursday.

Dr. Brain Visit

I saw Dr. Brain yesterday. I was a bit nervous about how she would react to my reducing my Depakote dose. I had emailed her and she didn't respond; it turned out she tried but her email wasn't working.

Dr. Mind had initially scolded (but not yelled, which meant he wasn't TOO alarmed), then after I made several points basically agreed that I'm trustworthy and that I have such a long-standing and intense relationship with Dr. Brain that this probably was OK.

Dr. Brain was fine. She agreed that it was worth trying before letting my life be wrecked by what amounts to side effects at this point when I just don't need so much medication. She told me that it was ok, not me being (as I'd called myself) a "bad bipolar" because what I face is just such a medically complex form of illness and now that I'm better it's starting to be hurting my life in opposite ways as it used to. These ways though are much more fixable.

She did tell me the anxiety issues need to go. On my range of anxiety this isn't exactly block-buster territory, but it's noticeable, it's uncomfortable, and basically she implied I need to suck it up and take anxiety meds. So I'm back on 1 ativan/day around the worst anxiety time of day. For some reason I always resent needing to treat my anxiety. For those who haven't been around for some round of this, I have SEVERE anxiety issues. Which makes sense; in my time I've been diagnosed with: depression, primary insomnia, generalized anxiety disorder (severe), PTSD, OCD (sort of a variant), and of course bipolar. Even one of the hardest bipolar symptoms for me to handle is really anxiety: paranoia. But anyway, most of those diagnoses are anxiety related. It's why it was so very hard to diagnose me with bipolar. The OCD came later, Dr. Mind thinks I have a form of this, and that this is part of why I'm hard to treat. Sure enough, as we treated OCD-like symptoms I got better. Go figure.

Anyway, I took my ativan today and low and behold I felt better. So I guess I did need that.

And to show how good I feel I actually was productive without exhausting myself.

So it was a good weekend overall. Just too short.

10 days until I leave for vacation!

Many things

Sorry for scarce postings. Essentially, I've got lots going on. The weather here continues to interfere with my life. I actually am now ice-skating to my car, and my car slides down the driveway onto the street. It's a great start to the day.

There are several stressful things at work. I can't go into it, but this job may be reaching an end. Many things are great but the distance just isn't.

I'm also totally stressed out about money. Basically I have just general anxiety that is centering on money. I'll survive, I've messed myself up by panicking and paying too much on debt to try to fix things all at once. Won't happen.

My anxiety is also just up because of something super: I'm on less medication! Because I want to give work the best shot I've got before I quit I cut back on my Depakote before I was really supposed to. So far I feel really good except for anxiety. So I'll have to take something for that. I see Dr. Brain Saturday so she'll fix it. She always does.

The benefits of cutting back on meds are incredible. (Not that anyone should do this without doctor approval, of course; these reasons aren't exactly sufficient). One thing I've kept quiet here but am now believing enough to say: I'm losing weight. First, remember I have also come off of 350 mgs of Seroquel in the last 6 months and that has a role. (Plus in the last while I'm down 1000 mgs, or 1/3 of my enormous dose of Depakote). But we're having a weight loss competition at work. My team is in 3rd place for our company and a lot of it is me. I've lost 12 lbs in a month, I think. I'm down to some pants being too big to wear anymore, and some one size lower fitting. I am so excited. I was scared to try because it's sometimes so hard to lose psychotropic weight and I did not want to fail because I'd be hard on myself. But it's actually gone well. I'm doing a diet for people with insulin resistance (pre-diabetes), which makes total sense because a)it's a set of guidelines, not a diet b)atypical anti-psychotics make you prone to diabetes c)I've got signs of pre-diabetes and actually had a non-fasting glucose a month ago that could have qualified me for diabetic testing (but I had a lot of juice before that test so we're waiting to see if it's a glitch).

So, that's about that.

New addition

You'll notice a button has been added to my page on the right.

Somewhere I stumbled into this family and have enjoyed the love that is so evident in their family stories while they deal with a medically fragile, adorable little girl who has Down syndrome, a kindergartener who has autism, a toddler, and a very sweet, obviously from her recent "I have a dream" essay, smart 2nd grader. They've been through a lot; the medically fragile child has had many surgeries and is almost 2 years out from the diagnosis of leukemia (she's been in remission a long time). And the father is in the Army and has been overseas for the last 15 months.

They are in the process of adopting a little girl from an Eastern European nation who also has Down syndrome. Apparently in those orphanages we hear so much about children with even minor disabilities are institutionalized and un-adoptable at the age of 5. Many never leave a crib, even when it is outgrown.

Anyway, I try to randomly support a charity every month or so. This year I'm going to try to keep this family on my list for repeats.