IM DONE!

I HAVE HAD IT WITH MY DOCTOR, WITH MY CASE MANAGER, WITH THE WHOLE DAMN CLINIC!  I REFUSE TO GO THERE ANYMORE, EVEN THOUGH IT IS THE ONLY CLINIC I AM ALLOWED TO GO TO.  

HERE IN AZ, IF YOU ARE ON MEDICAID, AND YOU ARE DETERMINED TO BE ‘SMI’ (SERIOUSLY MENTALLY ILL)  YOU ARE ONLY ALLOWED TO GO TO ONE OF FIVE CLINICS FOR ‘SMI’S.  YOU ARE ASSIGNED TO THE ONE CLOSEST TO YOU, AND CANNOT JUST SWITCH.  ALSO, THEY ARE ALL RUN BY THE SAME AGENCY THAT CONTRACTS FOR MENTAL HEALTHCARE FOR MEDICAID FOR THE STATE.  SO THEY ARE ALL THE SAME.

SO I HAVE NO OTHER OPTIONS FOR WHERE TO RECEIVE MENTAL HEALTH CARE.  I CANNOT GO TO A ‘GENERAL POPULATION’ MENTAL HEALTH CLINIC, BECAUSE I AM ‘SMI’.  I CANNOT GO TO A DOCTOR WHO IS IN MY MEDICARE PROVIDER LIST, BECAUSE THEY DON’T ACCEPT MEDICAID PAYMENTS.  SO I WOULD HAVE TO PAY THE MONTHLY PREMIUM MYSELF FOR MEDICARE PART B, AND I WOULD HAVE TO MEET THE DEDUCTIBLE FOR PART B AS WELL BEFORE MEDICARE WOULD PAY ITS 50% FOR MENTAL HEALTH CARE.  IF I USE A PROVIDER FROM AN SMI CLINIC, THEN MY MEDICAID IS ACCEPTED, AND THE TOTAL BILL IS PAID.  ALSO, IF I GO TO AN SMI CLINIC, MEDICAID WILL PAY MY PART B DEDUCTIBLES AND PREMIUMS AND COPAYS.

SO I HAVE NO OTHER CHOICE THAN TO STOP SEEING A PSYCHIATRIST, SINCE I REFUSE TO KEEP BEING TREATED LIKE CRAP AND NOT HAVING MY NEEDS MET AT THE SMI CLINIC THAT IS THE ONLY ONE I AM ALLOWED TO USE.

SINCE I AM NO LONGER GOING TO GO THERE, I CAN NOT GET MEDS ANYMORE.  SINCE I AM NOT GOING THERE, I CANNOT GET TEGRETOL LABS DONE SO MY NEPHROLIGIST DOES NOT KNOW HOW MUCH TO ADJUST MY MEDS FOR THE ACIDOSIS AND EDEMA I HAVE THAT WAS CAUSED BY THE LITHIUM AND WORSENED BY THE SWITCH OFF OF IT TO FIRST DEPOKATE AND NOW TEGRETOL.  SO HE CANNOT HELP ME IF I CANT GET PSYCHIATRIC LABS DONE.

OF COURSE, THIS ALSO MEANS THAT I CANNOT FINISH MY PHP PROGRAM (PARTIAL HOSPITALIZATION), BECAUSE IN ORDER TO BE IN IT, YOU MUST HAVE AN OUTPATIENT PRESCRIBING PROVIDER.  AND SINCE I NO LONGER DO, WELL, THAT AVENUE IS NOW CLOSED TOO.

SO I AM NO LONGER SEEING ANY DOCS OR GETTING ANY MEDS OR PARTICIPATING IN THE PHP PROGRAM.  I AM GOING IT ALONE, SINCE I AM THE ONLY PERSON I CAN COUNT ON TO BE ON MY SIDE. IT IS TRUE WHAT THEY SAY–ALWAYS LOOK OUT FOR NUMBER ONE, CAUSE NO ONE ELSE WILL.

I WILL DO ALL THE THINGS I KNOW TO DO TO TRY TO STAY STABLE, AND IF I CANT, WELL, I CAN ACCEPT THAT I WILL HAVE MANIC AND DEPRESSED AND MIXED EPISODES AND THAT I WILL JUST HAVE TO TOUGH MY WAY THROUGH THEM OR GIVE IN.  AT LEAST I WILL NOT HAVE ANY EXPECTATIONS OF THE DOCTORS OR BE DEPENDENT ON THEM FOR THINGS THAT THEY FAIL TO DO, FOR FAILING TO LISTEN TO ME AND MY SYMPTOMS.  I WILL TAKE CARE OF ME FROM NOW ON, WITH EPISODES OR NOT, AND DO THE BEST I CAN.

OF COURSE, I FORGOT TO MENTION THAT THE SMI CLINICS HAVE THE RIGHT TO PETITION AND COURT ORDER ANY PATIENT WHO REFUSES TREATMENT AND REFUSES TO TAKE MEDS OR KEEP APPOINTMENTS.  IN OTHER WORDS, BECAUSE YOU ARE SMI, THEY HAVE THE RIGHT TO SAY THAT YOU DONT HAVE THE RIGHT TO REFUSE TREATMENT AND THEY CAN COMMIT YOU.  I SAY, BRING IT ON, BITCHES!  

Better, I Guess…

Ok, so I had my Emergency Clinic Appointment, the one to try to help me get more stable after the first 2 weeks of being on Depakote from Lithium.  As you probably noticed in my recent posts, my mind has been all over the place, like it was full of live wires not attached just sending shocks and sparks everywhere.  I couldn’t even see through all the brain activity or hear through it to barely perceive the ‘real’ world that everyone all agrees is there, that everyone sees, the table, the tv, the computer, the room.  It was as if I was about to pass out, when all the colors invade your ability to sense, until the feeling either passes or they give you the smelling salts…and the smelling salts actually make all that distortion fade away and your brain goes back to seeing the world around you properly again, and you ‘wake’ up.  Except, of course, nothing works on a bipolar brain that is like that when it is like that, so you just keep going without actually seeing or perceiving, on the verge of passing out.  

So they gave me an increase in the amount and frequency of trazodone, which i usually was taking only as a prn when and if i noticed i was getting nervous, jittery or anxious during the day. now i take it at a higher dose, and i do it 3x/day.  They also added ambien for sleep, cause with my brain malfunctioning, I haven’t been made tired by my normal seroquel at night.  not only did they add the ambien, they doubled the dose of the seroquel on the idea that more of it would also help with my sleep and it would also add to the anti-psychotic support of the depakote.  But they want to still keep going with the depakote and not go back to the lithium.  And they wanted me to stop the cymbalta, the only antidepressant that has ever worked.  I was afraid to lower or stop it since it has really kept the depression from being strong while I was on the lithium.  But they thought it was feeding the mixed state I’m in.  I think getting off it or lowering it might make me go from a mixed state to a constant depressive state right now.  And if I was unable to get out of a bipolar depression, I might actually be a danger to myself in the very near future.  At least in the mixed state, I am going from one extreme to the other, and I know the depression won’t last, and neither will the mania.  Even though still being in the mixed state is horrible, is almost impossible to function in at all.  Stringing words together to make sentences is such a challenge, so difficult to concentrate, to think.  So hopeless feeling, can’t stay like this either.

So, now that I’m taking the new mix, I am still not being made tired at night, not with the extra seroquel, or the extra trazodone, or the ambien.  It is taking 1-2 hours for me to fall asleep after taking them.  But during the day I am much more somnolent, much more removed from the world. I am kind of like a zombie, but I can still get up and do things, just a lot slower and harder to think through what I am doing.  And it feels like most of my emotions, my feelings in relation to any situation I’m in, are extremely blunted.  I smile when something is really funny, but no more.  I make no movement or change when something is very sad.  I can think clearer, but it takes so long to put together the thoughts.  My brain is so wrapped in cotton or saran wrapped it seems to be protected from any emotions at all, but the smallest, in response to the world around me.

So, I guess I’m feeling better.  No big ups or downs.  No running around like a chicken with its head cut off.  No crying endlessly for no reason, wishing with all my might I could go to the hospital or find a place alone to end my sadness.  But knowing I can’t because what would happen to my kids?  But now although I am ‘stable’, I am also removed, slowed, and dulled and blunted.  I lack almost all emotional response.  And I am still not sleeping well. This is not how I want to live either.  So, is it really better?

I wonder if I will ever be able to get back on lithium?  Or if they will just keep adjusting my peripheral meds until it is more tolerable?  How long until I feel like myself again? (if ever).  Was it all my mistake when I gave in to the pressure from my psych doc to try other mood stabilizers? Maybe I should have stood my ground, even though it seemed to be childish?

So, my next appointment is in 8 days.  Guess we’ll see then.

Maybe…

Maybe I’m not really sick anymore.  Maybe I just learned it’s easier to say I am.

Maybe if I just tried again, got up on that horse again, I could be someone.

Maybe I was never sick to begin with, just sick of life.

Maybe I’m really better now, Maybe things are better now,

But I won’t give them or me a chance to grow, a chance to bloom, to afraid to fail

Again.

 

What will happen if I open the door, Open the door to life again?

What will happen if I step outside, step outside of my safe place again?

Step outside into the real world again, with expectations, obligations, and responsibilities?

Where I have to perform like the elephants at the zoo and the monkeys at the circus?

 

What if I make mistakes, What if I can’t perform anymore?

What if I can’t make the grade, fail to beat the score, can’t move fast enough anymore

Can’t keep up with the pace, find myself again failing the race.

Lose my place, keep trying anew, finding I can’t make a fit anywhere.

 

Things going wrong, haywire again, find myself stuck back inside

Unable to venture out, unable to win, the bar too high that was once so near.

Finding I’m back at the bottom, but this time there is no net

No one believes I can’t make it yet.  They say I’ve had time enough

To get back into that groove, can’t keep quitting when it gets too tough.

 

No more support, no more kindness, no more safety net to catch me now.

End up back in my head, can’t get out ever again

Can’t leave my shelter, my safe space, I know now

No one will believe me if I try again and fail.

 

They will say she is just not ill, She is just too lazy

To do her share.  She is selfish, expects the world to

Work for her and us to tell her so.  She wants to wallow

In her despair, Brought on by her own failures.

 

The system will say she had her chance, that if she had been telling the truth

She never would have tried again.  She just could have stayed inside, no one

Ever questioning the tide.

 

But maybe I was wrong, all those years ago…

Maybe I wasn’t really sick, just swallowed up in my own sadness,

In my inability to change my life.  Maybe I just gave up, gave in,

To my inner world that said I’d never win.

 

Maybe I should have kept trying, and I would not be so stuck today

On whether I deserve a second chance at life, or whether I should stay.

Inside.  Safe.

 

So I’ll never know if I could have won, Never know if I could do it again.

The risk is just too high, can’t be a failure all over again.

Once is enough, and done is done.

Metabolic Weight Loss, Instability, Regrets and the General Pointlessness of Things

So, I am partway way through my 3rd week of 4 of Metabolic Weight Loss nutrition and exercise program.  Have I lost any weight?  No, I had lost 1 lb, but then I switched from Lithium to Depakote, whose side effect turns out to be salt and water retention!  No kidding!  I jumped out of the frying pan  (lithium) just so that I could jump into the fire ( depakote).  Stopping the lithium was supposed to stop the ‘voltage dependent drug-induced R(enal) T(ubular) A(cidosis)’ that was characterized by my body thinking lithium was Salt, and wasting the real Salt instead, leaving way too much Potassium in the body that can’t bind with lithium like it is supposed to do with real salt.  So, my nephrologist was in agreement with me that since the lithium was so effective in stabilizing me, then we should stay on it as long as possible.  However, my psychiatrist felt that it was imprudent to do that, and really pushed and pushed for me to change off the lithium to anything else.  So, after like 6 months, I finally gave in to her and agreed to switch to depokate.

Well, we expected the hyperkalemia (excess potassium) to resolve, since my body would not be wasting its own real salt anymore since there would be no lithium to trick it.  So, all my symptoms were supposed to recede and be ‘normal’ again.  But what ended up happening is that my feet just grow bigger and fatter and more and more painful all the way up to just under my knees.  I look like I’m walking on big giant stubs.    Sleeping or putting them up does little to nothing to help them go down.  I had to fight with my psychiatrist and my nephrologist just to get an earlier appointment to see my nephrologist sooner.  Then my Case Manager at my mental health clinic insisted I acknowledge how she had made it all come together so I could see my nephro sooner, because she talked my psychiatrist into talking to my nephro about the swelling issues.  Except, I saw my nephro yesterday, and he had never heard of either my case manager or my psychiatrist or my clinic and the only reason I got in to see him earlier was because he heard my messages and was concerned about what I described going on.  So, my new case manager is not just trying to grub for acknowledgement and validation from me, her client, but she also lies about what she does ( and probably about what she doesn’t do, too).  Neither she nor my psychiatrist had anything to do with me getting my nephro to see me sooner.  It was ALL me!  That means, I am really failing to be getting the help and support of my psych team and they are not doing any of the communication between providers that they are supposed to do and the follow up too.  That means I am doing all the coordination and pushing and organizing all on my own.  So what good is it to be determined as SMI (Seriously Mentally Ill) and then being told to go to ma particular clinic for all your cares so that everything will be coordinated and followed up on so you, as a SMI person, will not have to fight the system with each interaction or symptom or whatever.  So that you, the disabled person, will supposedly be getting help to do and stay on top of all these things and not have to get stressed out and can concentrate on getting better, more stable, more ready to return to work or volunteering, etc.  But they don’t.  They just keep pretending and taking all the credit and leave you to fight all the battles on your own just like as if you had no SMI designation or had no Disabled designation, or were a regular working person contributing to the community with little more than small issues to be dealt with, not the large ones of Bipolar, Schizophrenia, etc.  But now that I am recognized as disabled and SMI, I have no choice to what services I can receive.  I am forced to go to 1 out of 1 clinic, and I am forced to work with the ‘team’ I am assigned (Psychiatrist, Nurse, Case Manager, and, on some teams, you even have to accept the primary care doc that is on your team–you can’t even go out into the community to choose your regular doc!  Every doc you see must be in the clinic is where they are going with this.  They even have a pharmacy you must use in the clinic as well).  And now, I have no choice over any healthcare providers at all.  I am lucky they have not yet put me on a team with a primary care doc, or a nephro specialist.

So, anyway, back to the original point.  I finally got thru to my nephro that I needed him to see me, and he did.  He is such a great and awesome doc–my best doc by far.  Wish he could be my doc for everything!  So, he is concerned that my body is not recovering like it should be.  Now that the fake salt, lithium, is out of my system, I should hold a normal amount of salt in my system to bind with the potassium.  They should both be at about the same ratio.  I should not have to worry about the hyperkalemia anymore, nor should I have to worry about hypernatremia.  But, I am definitely having hypernatremia issues—that is, way way too much salt leading to this huge swelling.  This should not be happening, except there is a rare possibility that I am having a a rare side effect of the new med, the depakote. Once in a great while, some people get the side effect of intense swelling and salt retention.  Hah!  I let them talk me out of taking a med that we had gotten well controlled that worked wonders for my stability, just so I could avoid the future potential pitfalls of that med on my kidneys, and now I’m on a new med, which is not causing me heart and liver issues by retaining salt and water!   And now, this is not well controlled the way the lithium and its side effects were.  And the depakote is not stabilizing me as well as the lithium was either.

So, back to the original point.  How am I expected to stay and maintain a healthy weight, a healthy body, and a healthy attidude and move forward in my mental health recovery when this is what I’m dealing with?  I can’t lose weight cause all the mood stabilizers have that as an effect.  Most of them also have really bad effects on me like the lithium leading to the kidney problem and the depakote leading to the heart problem.  And if I’m forced to keep gaining weight, and I am having difficulties with all the related side effects, then how would I be able to lose weight, even with the metabolic stuff?  And if I can’t stay sane and lose weight and deal with the heart and or kidney or whatever other issues would happen….then how am I supposed to stay positive enough to move forward and become a productive citizen again?  Is it the illness, the side effects, the meds, or the complications…that keep me disabled?  That keep me from being a useful human being again?  And damn it, I am tired of suffering and tired of my life never being able to move ahead.  Tired of being unable to do things.  Tired, so tired.  Something has got to give.  No matter what I do to get better, something else is sacrificed to make it happen.  So there is always something never getting better.

And I am not the mother I thought I could be, and I am barely holding on to life for my kids.  No, really, I mean if my ex misses one support payment because he changes jobs, or something else, we could end up on the street.  And I am certainly not capable of raising a family like that for the next 2 years.  I couldn’t even take care of me in that state for a month.  I live in fear of this every month.  I just found out my ex is moving to California from Az, where we all currently have been.  But his agency can’t find him computer programming work in Az, so they found him a spot in a place in Cali.  But he’s not happy with it, it won’t meet the cost of living changes.  And he’ll be looking for a new job once he’s there.  When he switches jobs, a new court order must be petitioned by me, then the court takes several months from time of filing to rule on it, then the court orders the employer to hold the money and pay it to the state the custodial parent is in.  Then the state processes the funds and distributes them to me.  So, if he even misses one normal payment of the 2x/mo….we are evicted.  We lose our car insurance and can’t drive.  Our house of cards falls apart.

So, I think I have made mistake after mistake, leading to a tenuous existence from which my grip will surely slide sooner or later.  I should never have quit working.  I should never have stopped the lithium.  I should never have gone down this path.  Where to go now, to start over or push on, I don’t know.

I knew I Shoulda Kept My Mouth Shut

i should never have said i was feeling the teensiest tinsiest bit better, a tad bit happy even.  because after i spent a great session i went home and found out that the agency that will be providing behavioural health services to the state Medicaid beneficiaries has been changed effective April 1.  OK, no so bad by itself.  but the then the letter says since MI is going to now be providing all Medicaid people with mental healthcare, they decided it would also be more efficient (and allow them to more closely monitor their conditions) that they will force any people who are ‘SMI”, or Seriously Mentally Ill (basically if you are unable to really work a real job full time due to mental illness—and that is me—)  all Medicaid mental health beneficiaries who are SMI will be forced to change their Medicaid insurance plan to the MI plan as well (the one that will be providing general mental health and SMI—if you are SMI, you will also be forced to use MI plan for all you PHYSICAL healthcare as well.  If i am forced to change to their Medicaid physical health plan, then i will automatically be dumped from my Medicare plan since, it is a dual plan, meaning my current plan gives me all my Medicare and Mediciad physical health coverage.  If i am forced to drop my physical Medicaid plan because I am SMI, then I will also be forced to drop my Medicare plan, and the only plan I will be able to get for my Medicare services would just happen to be, yes, you guessed it, the new MI plan.  So, because my mental health care is categorized as SMI, and MI is now going to provide all SMI and regular mental health Medicaid services, I will be forced to change my Medicaid physical health plan as well.  And, if I am forced to do that, then I will also be forced to drop my Medicare plan and again go to the MI plan.

I have seldom felt more raped, abused, beaten and whipped than I do right now.  I no longer have choice of Medicaid physical health plans, I no longer have choice of Medicare physical plans, and it is all because I am listed as SMI instead of ‘regular mental health’.  So, this insurance plan gets to force anyone listed as SMI to take all of their insurances, but those listed as general mental health get to choose their Medicaid plans and if they are on Medicare, they also get to choose that plan.  But not us SMI–apparently since we are such a ‘sick’ population, we dont’ get the right of choice in healthcare, on insurance, rx, or on doctors.  I will have to stop seeing all my doctors.  All.  And get all new ones covered by MI instead.  Why should I be persecuted just because I have a more Serious Mental Illness than some?  Why should my choice of insurance and doctors be taken from me?  What will I do without my therapist?  I have been working with her almost 3 yrs and I am just going to be forced to change within the next 6 mo.  And i will lose my psychiatrist, my case manager, my nurse, not too mention all of my non mental health related providers.

Well, I shouldnt have talked about starting to feel better.  I should have known something like this would come along.  It always does.  And now it has.  And now i wish i never started to heal, to feel better, i wont win anyway.  i wont accept what they say. and since i cant keep seeing my therapist, or any other providers, there is nothing for me to gain–only lose, i wont let them win by forcing me to take something i dont want instead, i wont roll over and play dead, i wont let them control me.  so maybe i die,but they lose to. they wont make me say ‘thank you may i have some more’ either.  they’ll see what happens when they try to take away control from the people they are supposedly trying to help.  even one person refusing to be abused by them and dying will be enough to make the state take a look at what they are allowing MI to do underneath their very noses to the ‘vulnerable’ population they claim to be serving.

Sitting With It

Well, so I have decided to fall back to my old standard for when I can’t make a decision on some topic.  I find that ‘sitting with it’ often allows the decision/answer to float itself to the top of my brain, presenting the answer to me.  The only thing with that though is that I never know just how long I will have to sit until it all gels and the purified answer rises to the surface.  I am kind of antsy, and kind of in a hurry to resolve this situation about whether or not to stick with the wonderfully working, slowly killing me, lithium.  The anxiety is really bad, with this decision hanging over my head.  I wish my brain would hurry up and tell me what to do, cuz the waiting is killing me.

Eeny meeny miny mo….

Sacrifice

Well, I can’t seem to keep focused on the issues in front of me to deal with—my daughter’s mental health issues, my son’s God-complex issues, and my own mental-health v. physical health issues.  Everytime I try to think on what the best plan of action is for any of these issues, my brain just stops, just hits a brickwall and I can’t get anywhere with deciding.  So, I have come to a stop-gap sort of response instead.  These are not the ‘best’ possible choices, these are just the only things I can manage to come up with at the moment, and it will at least help me delay needing a solid answer to these things for a while.

So, I will do all that is required for my daughter, and put her first.  I will no longer fight or even become disgruntled with my son.  Instead, I am going to treat him like a casual acquaintance whom I don’t mind having around, but I don’t really want to get to know any better.  And well, as for me—that was the hardest one to grapple with.  I think I have grudgingly come to the place where I am not going to deal with any potential change of meds to improve my physical health issues.  I simply cannot conceive of not have my mental health relatively stable by giving up lithium.  There may indeed come a time when my physical health becomes so poor, that I may again have to revisit this issue.  Maybe when I am looking at dying, I might feel different about the potential decrease in my mental health and stability.  Maybe then, I may decide losing a bit of sanity is worth increasing my life by a bit.  Or maybe not.  I won’t know til I get there, and I guess I’ve only taken the second leg of the race so far.  I guess we’ll see how the rest of the race pans out.  But at this point, I’m sticking with mental health all the way.

 

 

My Son Has a God Complex

Oh, god, what do I do now?!  My son thinks he knows everything about everybody else, thinks he is smarter than doctors, and thinks mental illness is a weakness in one’s constitution that they could stop having by only believing they don’t have it.  He thinks he is omniscient, omnibenevolent, and omnipotent.

Tonight he condescended to tell my daughter and myself that 1)not only does he know more about mental illness than she or I do, 2) but that he also knows how to help her (and me, as an afterthought) become un-depressed by just using magical thinking (I think I’m happy, I think I’m happy) and of course, 3) that he knows mental illness is just a creation of man (for what purpose, I’m stymied–but then humans are stupid little beings who need a god’s guidance).

He deigned to hold court with us, telling my suicidal, cutting, daughter that she was making up her depression.  That all she needs to do is think positive, live well, and be outgoing and social instead of introverted and a loner.  PS–if you don’t already know this from other posts, my daughter, H, has and always will be, the most outgoing, friendly person you will ever meet.  She has always spent more time out than in–has always ran headlong into anything interesting or different or new.  She has always had dozens of friends, and has always spent lots of time with them.  She has never been a homebody or one to sit still.  So, for my ‘god’/son to tell her its in her head and all she has to do is be outgoing, well, duh.  She already is and it doesn’t change the fact she is depressed!  

He went on to say that psychiatrists and psychologists, and therapists are all quacks, and he will personally never see one, but then, he won’t have to, since he said he’ll never be depressed because he won’t let it happen.  He also said that psych meds are ridiculous, because all they do is addict people so they can’t function without them.  So, when I tried to counter by saying a few years ago, I was very ill with my bipolar illness, but then I got on my current meds, and I am so much better, a different person even.  He said, ya, that’s how they hook you.  But then you have to keep taking them because you’re addicted now.  So, you don’t really need them now, but you are hooked.  So I said, but if I stop, I’ll get sick again.  And he said, that because you’re addicted.  There is no countering with him.  There is no logical debate of facts, theories and outcomes.  There is only ‘A knows all, A is always right’.  He has an answer for everything, even if it makes no sense and cannot be supported.  He won’t budge, won’t see the error of his thinking.  He even denied that mental illness are a chemical disorder, sometimes combined with trauma, life events, and heredity.  He said that he is not predisposed to mental illnesses, even though I have bipolar and depression and PTSD.  I even compared mental illnesses to diabetes and heart diseases and other things like thyroid or COPD.  He told me they are the same!!  That once a person is out of the hospital following a heart attack, that they no longer need to take meds!!  He even went on to say that people with diabetes don’t need insulin!!!  He supported this by saying they didn’t have those issues when they were born, when they were five, or even teens.  So that means they don’t really have those illnesses…they, like mentally ill persons, are simply weak and only need meds during a crisis, but not afterward for longterm maintenance.  He is insane!!!                

I don’t know what to do with him, or even if there is anything I can possibly do at all.  He is 17, and can’t wait to get out.  Until recently, he has never been like this.  I raised him to think logically, to gather information, to form a supported opinion.  I raised him to be respectful of others’ perspectives.  I raised him to be kind and caring and compassionate.  I raised him to think for himself.  But, ever since he has joined a certain church, he has become a person I do not recognize, and no longer want to know.  Where is the clever, brilliant, kind young man I raised all these years?  I feel as though I have lost him forever, as though he is gone from my life completely, even though he will be with me for one more year.

This saddens me so greatly, I cannot express in words.  I feel like I am mourning, but he is still here.  I don’t know this person he has become, and I don’t like him.  I want my son back.  I miss him.  And I feel like I must be a terrible mother, have done something awful somewhere along the line, to have lost him like this.

Whose Illness is More Important?

Recently, I have been struggling with physical issues (moderately severe) caused by the only drug that adequately manages my bipolar disorder.  I always was aware that this day might come, that I might have to make a choice between mental health and physical health.  That in and of itself is hard enough to deal with, causing me much mental distress, that is not even yet solved.  I don’t even know if I can solve it so the situation would be acceptable.

Then there’s my daughter’s bf (female to male transgender) and his mom.  Twice now I have taken in the bf (K) for a week each time, when his Mom had to be hospitalized (psych).  This last time, while his mom was in, and he was staying with me, he became suicidal and I had to have him admitted as well.  Then, my daughter’s therapist recommended she be looked at by a psychiatrist for possible mood disorder.  I then learn my daughter has been cutting, and is suicidal also.

I am so torn.  I feel like I need to go into the hospital just for my quandary alone.  I feel so hopeless about my own future, no matter what I do about my meds.  The kids are almost grown, they could make it without me.  But I feel selfish to even think about putting myself into the hospital when she is struggling so.  When she might very well go into the hospital any day at this point.  So, I think I should make my own troubles go to the back of the line of things to take care of in my head.  At least until my daughter is out of danger and is stable again.

They say on airplanes that if there is an emergency and the oxygen masks drop down, that if you have children or other dependents, you should put your own mask on first, because if you do your children first, you may die and there would be no one to care for your kids, and so everyone would die because you took care of your kids first.

So, do I defer my own current troubles, and take care of my daughter’s?  Or do I save myself first (by going to the hospital) and then take care of my daughter’s troubles?  Could she wait that long?  Is it right to make her wait like that?  What about me?

Of Course I’m Fat! And of Course It’s Because I’m Crazy!

So, long story short.  Because I take lithium, my body holds it and stupidly gets rid of the real salt.  That makes my potassium go super high.  So to keep the potassium down, i have to eat a low potassium diet and keep my lithium stable and see nephrologist to make sure it all stays in balance.

So, two weeks ago, my feet swelled up quite a lot, at least 3+ non pitting.  Even going up above my ankles.  So I finally got to see the nephro today and show him my ankles.  I asked what it could be from, if I needed tests to find out.  He said to me well, according to your chart, a year ago you were 22lbs lighter.  So, the reason you’re ankles and feet are swollen so much is because you are overweight and your body can’t keep up with it.  What you really need to do is go home, cut down on the carbs, the salt, the calories and the potassium–then start exercising.

I got a little tetchy at this point and queitly said through clenched teeth, are you telling me you are not going to run any tests or try any drugs to attempt to treat my huge feet?  Because I am fat, and so, that means there’s nothing wrong with me having hugely swollen feet?  to which he very nicely and roundaboutly basically said, yes.

At which point my amount of tetchyness dissolved immediately into a full waterworks with tears dripping down my face, and me trying to hold in my sobs and not make any (unseemly) noise.  To which he responded by saying, well, you are certainly labile today.  I can’t understand why that would be.  I don’t see why you are so upset, you gained the weight.  I think this appointment will be the last we’ll have.

To which I said, I’m upset because my feet are grossly swollen and have been for over 2 weeks, and regardless of how much I weigh, they still need to treated because this is not normal.  And I am scared, and frustrated, and don’t want to get sicker or have more problems, and I want you to help figure out what’s wrong and fix it, and I’m not getting that are going to do that.  Granted, it didn’t really come out like that though.  I was still trying to hold in my bawling, sniffling and leaking eyes.

He left the room and then came back and said you can go now, we’re done.  So I went to my car and cried for 10 minutes before I could see to drive. I tried holding back the rest of the tears until I got home, when I realized I wasn’t 100% sure he was going to still follow me after what he said in the exam room.  I finally got connected to the office, and I asked if he was still intending to follow me.  She asked why would I think that he wouldn’t–so I said because he said so.  She left and returned, telling me I must be mistaken, because she just asked him and he said Oh, she must have misunderstood me!  Of course I am following her, AND, I am sending her to have her legs examined for valve prolapse/vericose veins AND I am cautiously starting her on diuretics AND I want to see her in 6 weeks.

So, my 41 y/o feet are a large amount swollen, and the reason is “I’m fat”..and there is nothing else to be done about it.  And when I cry because all my fears, frustrations and have just been summarily dismissed as ‘nothing/nothing important’ and then my emotions are dismissed as occurring only due to my being diagnosed with bipolar disorder.  If any other person without a known mental illness had been there, he would never have assumed their raw emotions were just a symptom of their mental illness.  He would assume they were valid emotions.  He would assume they were worried, scared, afraid of having a serious problem.  He would have offered them the available possible causes and treatments.  He would not threaten them with not seeing them again.  He would definitely not have discounted their experience of the situation or their fears and concerns.

So my advice to you is DONT GET FAT.  DONT GET SWOLLEN FEET.  DONT SHOW/HAVE EMOTIONS or the doctor won’t take you seriously. They will dismiss your complaints, your symptoms, and any information or emotion you share, as being only due to your mental illness.  They do not think you are credible and will discount everything.

I am going to find a way to have someone accompany me to all my appointments from now on, to act on my behalf as both a witness, someone who can keep track of what has been said and done by me and by the doctor.  Someone who won’t let me be discounted  and unvalidated but will call the doctor on it.  Someone that if I start to cry or get tetchy will smooth things over so things don’t get carried away.  I’ve thought about doing this for a long time, but I was managing to get through each appointment as it came, so I never went any further than thinking.  Now I’m really gonna do it.

I have to go now.  my leg is numb up to my hip, and foot is tingling so strong I can’t stand it.  But it’s ok, I’m just fat.  I’ll just go lose some weight right now.