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.

Just a Question…

This is not really a ‘real’ post.  But my kids are soon going to be leaving home, 1 year for my son, and 2+ years for my daughter.  I am freaking out about what will happen then, what choices will I have.  I am scared to death that I will end up without enough funds to even keep a studio apartment (since I will be reduced from my kids social security and child support to only my own social security).

So, I have been pondering what I may be able to do, and one of my possibilities is moving to Costa Rica and living as an expat on a pensionado visa, based on my government guaranteed income (social security).  I was wondering if anyone has ever lived abroad, dealt with visas, embassies, etc. and might have any helpful suggestions on this path.  Any input would be welcome!

Thanks!!

Moving Right Along

I’m probably jinxing myself by even thinking this, but, throwing caution to the winds, I think I’m actually doing all right.  I’m starting going to groups at my clinic this week (fingers crossed that no obstacles appear) and I’m going to be asking my Rehab Specialist at the clinic help me to get a part time job (under @720/mo-so I won’t lose my SSDI or Medicare/Medicaid).  I really feel I am in a place where I can look forward to a day a work–finally.  I haven’t even been able to picture myself trying to work since 2006.  Before, just thinking about having to leave the house for any reason was so overwhelming that I have basically been a hermit.  The only things I have really been able to get myself to leave the house for has been medical/psych appointments and grocery shopping.   So, I think this new perspective is really amazing, where now I am not avoiding opportunities to leave the house, but am actively pursuing reasons to go out, and they are not overwhelming and scary now, but sound interesting/exciting/fun.

Well, unless I have jinxed myself by sharing this, I hope to finally start moving forward.  Maybe, there really is recovery-at least enough to enjoy life again.

Crawling Back Up Again

Well, the free-fall spiraling down seems to have hit a plateau.  Now, to climb back out again and try to get back to where I was before this.  The immediate good news is my ex did end up giving us some cash to tide us over til the support check is finally released to me.  Of course, I had to sign a paper saying I would repay the cash amount when the support is finally disbursed.  But, whatever…So, I was able to pay the bills —of course,  I had to walk a 2 mile round trip to get to the gas station to buy the money orders (remember, I’m in the desert near Phoenix, so its already quite warm).  And I was able to buy food as soon as my car insurance was reinstated–which was yesterday evening.

I called DCSE (Child Support offices) but they wouldn’t tell my why they were not disbursing my payments.  They said the ex had to call, that it concerned him.  So, he did, just this past Monday.  Turns out, they only just got the memo that he was applying for a passport (he applied in January, met the requirements to obtain it, and has already been to China and back by March), and they hadn’t gotten the subsequent ones, so they thought he wasn’t allowed to go and so they for some reason decided it would be a good idea to make the children suffer for his wanting a passport by not paying it out to me.  So he explained he had already gotten his passport and done all the things he was required to do to get it, and had already been on his trip and returned, and that it made no sense to stop sending the money he is paying to his kids who are supposed to be getting it.  So they looked into it again, and VOILA!  Lo and Behold, there was absolutely NO REASON for them to be holding my disbursements of his payments for last 2 months and THEY DONT EVEN KNOW WHY THEY PUT A HOLD ON IT IN THE FIRST PLACE!!!

So, basically, DCSE randomly decided to hold my payments for 2 months, even tho the ex was making the payments.  So, FOR NO APPARENT REASON,  DCSE almost got me and the kids evicted, homeless, and without transportation or food.  Actually, I still haven’t received my first payment.  They said Monday that I should have it by 5 days.  But I didn’t get anything so far, and its Saturday—6 days.   So, the ex is gonna have to call them back and demand they make a payment to me AGAIN!

Even though I haven’t got a payment yet, things are at least not getting worse.  I can drive again, and we have food and power.  So, at least that’s something.  I have decided to move to a 2 bdrm (me and my daughter will have to share one) so that then I will not be spending all my Social Security payment on rent.  Instead, I’ll have some left after rent on a 2 bed (as opposed to now, where I have none left paying on a 3 bed).  So, what I have left will pay for the things I can’t be in fear of not having–like power, water, phone, car insurance.  That way, if anything like this ever happens again with the DCSE/child support not being paid to me, at least we won’t be in fear of losing everything.  The basics will be guaranteed.  So, this means a new project–apartment hunting (again!) and moving (ugh!  again!).  Our lease is up August 8, so I want to sign or put a deposit on something in early July.    I’m really, really hoping that spending less on rent will ensure that the basics will always be paid, no matter what happens with the support money.  I really hope this move will end up being worth it, and not just another huge waste of time, effort and money.  again.

Oh, and just in case you start to get any ideas that things are looking up and no problems are on the horizon, I remind you that I am THAT PERSON who ALWAYS  has bad luck.  Yep, today my son’s car started leaking some fluid.  We tentatively think it might be coming from the gas tank (which I just had the entire fuel system and carb replaced, so it BETTER NOT be from the gas tank!) But whatever is leaking, it can’t be good.  Can’t be cheap, altho even cheap at this stage is exorbitant to me.  We are still functioning on the bare minimum of everything.  So, of course, we escaped being evicted only to jump into a new fire of care repairs (also, AGAIN!).

Many of the days since my last post were very, very close to being the last.  And I just wanted to post this so everyone will know I’m still here (for today, anyway), even tho things haven’t exactly righted themselves, at least we have stopped sinking (for the moment).  And thanks to those who lent me their support and words.

Remember What I Said About My Bad Luck?

This post may be *Triggering*

Im in a very negative space right now.  I think all the signs are pointing to telling me ‘now’s the time, go ahead’.  I haven’t received child support since March 4.  So, I have about $20 left.  So my car insurance has been cancelled, leaving me open to the state suspending my license and suspending my cars’ titles, for which they could also fine me hundreds of dollars each, plus making me get SR-22 for a time of their choosing.  And that’s just the first thing.  Next up to go are my TV and Phone, in 5 days.  Then, I can’t even afford to get bus passes now, so we can’t get anywhere–like to my appointments at the clinic next week, and to my therapy.  So, my ex insists DCSE has taken the support out of his last 3 checks, and he doesn’t know why I haven’t received it.  So I call DCSE.  After about 30 minutes on hold, I get a fellow and tell him I think the payments have been lost in the system.  He puts me on hold to check it out and comes back.  He says, “Well, there was a development on your case concerning the other party (my ex), and so the financial department (of DCSE) is holding your payments until it is resolved.”  So, I asked what is this ‘development’?  He tells me it concerns the other party and by law that is all he is allowed to say, and that he sent an email to them requesting urgently that at least one of the payments be released to me.  He adds, if the financial department decides to release a payment to me, it will be at least 10-15 days from today.  He said he was sorry, but that was the most he could do.

So, we can’t get anywhere–no bus, no car, no cab….I’ve gathered all the coins from the couch and pennies from the maxed out credit card.  I’ve got $20.  I’ll lose TV and Phone in 5 days.  And electric the first week of May.  My case manager has no solutions–just keep calling DCSE.  My therapist is trying to call places like my electric and see if they’ll work something out (I already called all my bills and explained the situation–none offered any help, except to explain what fees I will incur by not paying on time).  I can’t buy food.  And food boxes are not exactly well balanced in nutrition.  Plus, I can’t get to any of the food box locations to go get any.  I only get the 2 my case manager brings.  We got a lot of bread and canned beans this time.

I have two potential theories on why my payments are being held.  The first is that he made 3 extra payments in order to get his passport to go to China to see his fiancee.  So, they are counting those already made extra payments as payment for April, May and June.  If this is true, then that means, they won’t release anything to me until July.  How am I supposed to live without any income?  How is that GOOD for the kids? Why are they holding the money meant for the kids, and causing the kids who are supposed to get the money, to live in desperation with no electric, no transportation, no food?  Why are they forcing this to happen, when they are supposed to ensure that the kids are getting the money they need to live on?  The second theory is that my ex has made some kind of complaint to them against me concerning the manner in which I use the money.  Recently, we had a dispute, because I used the extra payments to buy my son a car (that both kids will use next year, and my daughter will the year after), and he had wanted me to use it to go toward a trip for my daughter to take.  I didn’t realize he had wanted me to use THOSE payments toward her trip, or I would have.  But I didn’t realize that, so I spent it on the car.  So, he was really, really angry at me, and hasn’t really spoken to me since.  So, I suppose it’s possible that he filed a complaint to them about how I use the money.  If this is true, and if they agree with him, it could turn out that they decide to put a Guardian Ad Litem in charge of my childrens’ monies, which means this Guardian would be in charge of how 2/3 of our household income is spent.  They wouldn’t even have to pay the bills (other than electric and food) if they think its not a necessary use of the childrens’ funds.  It would be up to them to pay any or any part of the bills.  And if this DOES happen, it could go on INDEFINITELY, with me having no control over what gets paid, when, except for the rent which uses up all my Social Security.

So, tell me again, why am I not using the final solution, the one I have in the palm of my hand?  If circumstances get ONE STEP worse, I will be in a shelter with my kids.  I’ll lose all my possessions I have gathered painstakingly over the last 4 years.  This is just about the end of the line.  Here’s the thing, if I just give the kids to my ex, all the issues with child support will stop.  All their needs will be met.  They won’t be going without food or electric or tv or internet.  They’ll be in a nice place, with all the things they need and also the others that are expected.  They’ll be with their dad.  And then it’s all fixed.  All taken care of.  But the longer I drag this out, the longer they will withhold the payments.  And the longer I keep the kids without yielding, the longer he will drag out this complaint.  All I have to do to fix everything is to give my kids to my ex.  All problems solved.  Except if I do do that, I have nothing left, nothing left to fight for, nothing at all.  Maybe I should go now, go quietly, and my kids will better off–not living like this with nothing, nothing but a shelter full of things that won’t work.  Maybe this is the best time.  By leaving now, all their problems get fixed, and life goes on….for everyone else.

New Horizons: Fears and Anxieties

First off, to those of you who follow me, I am so sorry I haven’t written recently.  But I have been reading and doing things in real life—this is a first in many years!   So, what have I been doing?  I have been getting up earlier (without an alarm!), I have been looking for a small part time job, and even applied at Target (it’s across the street, and I love shopping there!)  As long as I don’t work too much, I won’t lose any of my Disability benefits like Social Security and Medicare and Medicaid.  And that’s fine by me…I don’t want to work too much just yet!  What else?  Oh, yes, I changed ‘teams’ at my mental health clinic.  My med provider was always triggering me every time I went in for a med check.  Even when I would remind myself that he is just like that, he just seemed to always get me to react.  The most recent visit he asked if I was suicidal (standard protocol for mental health patients) and when I said sometimes he told me not to do it because my soul would get stuck inbetween planes and he knew this was true cause his grandfather told him so.  My team nurse can’t draw my blood, so I can’t use the lab at the clinic so I have to drive across town to a free-standing lab instead.  And my Rehab liasion insists to me that I cannot possibly have an open case and a case manager at Voc Rehab, because I didn’t meet with the VR counselor who visits the clinic once a month to do it.  She insists I could not have possibly have opened a case with VR myself (which I did 2 years ago) and that in order for me to get VR services I must close this supposed case and then open one with the VR counselor who visits the clinic instead.  Now, what I want to know is, why should I close a case just to open one?  Why go through all the work of that again, when all the information is already there?  Why can’t my VR counselor just transfer my case and files to the one who comes to the clinic? But my clinic Rehab liasion insists this is impossible.  She has no proof, no evidence, nothing to support her position.  She just keeps repeating that it is impossible, until I am ready to jump over the table and strangle her!!  So, since that is my current ‘team’, it finally occurred to me to switch teams.  It can’t possibly be worse.  Cause right now, all my ‘team’ members are horrible and triggering.  It can’t possibly be worse with another team, although I admit, it may possibly not be better… but we’ll take that chance.  We can always switch teams again!

So, what have I been up to?  I have been up to taking care of myself and feeling better!  I also am now volunteering at the animal shelter where I got my dog, looking for a job,  and switching teams at my clinic…and having a much, much easier time getting out and about, doing tasks more easily.  The only thing now is, how long will this last?  I know I shouldn’t be thinking about that.  But I haven’t felt this good in over 7 years.  For the last 7 years, I have been wearing a suit of armor and slogging through quicksand to do anything.  It has been so difficult that I have been able to do very, very little in all that time.  But the quicksand is gone now, and the suit of armor has been shed.  Movement feels easy again.  But how do I know this will last?  I mean, I have gone so long looking for it I’m not sure it’s real.  I want it so badly to be real, but at the same time I am afraid to believe it is real because it is probably only fleeting, and if I rely on it being real I will make commitments and plans and not be able to follow through on them as this feeling of well being slides away again, leaving me back in the quagmire, sinking all over again.  I am just as afraid as I am excited to get a job, to volunteer.  I am afraid that after 7 years of NOT doing anything useful, anything with a commitment, that I will fail.  And if I fail, that I will end up in the depths of despair yet again.  I am afraid of ruining this good feeling by failing at living and also afraid that even if I do well at these tasks that this good feeling will escape me also.  I’m so afraid of jinxing it, I’m not sure if I want to follow through on these ‘good’ commitments so I won’t be let down.  And yet, if I don’t try, I will never know if it might work out, if I might succeed, get well, become productive.  So I am trying to take it one day at a time trying to not think about anything more, success or failure, fleeting or staying well-being.

Please Call!

 

PLEASE RE-POST!!!

PLEASE CALL YOUR REPRESENTATIVE!!

For anyone who doesn’t already know, or in case I haven’t said it, I’m on Social Security Disability due to how my symptoms of my mental illnesses affect me, causing me to be unable to work, and well, basically, to do anything other than be a mom to my kids.  So, all the proposed changes and cuts to Medicare and Social Security benefits are really really important to me (and anyone over 65, or who is disabled and cannot work).  So, I am posting a plea from the AMA Action Network that I received today to not allow anymore cuts to Social Security, and another from The Progressive Change Committe, asking to vote against stopping any new COLAs.  All it asks is that you call your State Representatives and ask them not to vote for the proposed changes that would stop any new Cost of Living Adjustments to those on Social Security Retirement or Disability and also to stop any further cuts.  I think this is a really important issue, and not just cuz I am receiving that benefit, but because one day, all of us will be elderly and will be depending on the Social Security Retirement benefit that we have paid into our entire working lives.  This proposal, by Obama (!), must not become law!

 

PLEASE RE-POST!!!

PLEASE CALL YOUR REPRESENTATIVE!!

Ok, so here it is….:

You are receiving this email because you subscribed to the Patients’ Action Network. Not interested anymore? Unsubscribe.

Tell Congress: Failure in preventing Medicare cuts is not an option! Dear K, Inconceivably, patients are once again watching Congress come too close to the edge and risking irresponsible Medicare payment cuts. An impossibly steep 26.5 percent Medicare cut for all physician services is scheduled for Jan. 1 and the threat is growing day by day that Congress will do nothing but defer action until next year — once cuts have already been enacted. Inaction by Congress gambles with the access to care that Medicare patients rely on! Demand that Congress act before Jan.1 by contacting your representative and senators — send them an urgent email by clicking here and call their offices through our grassroots hotline at1-888-434-6200. Time and again lawmakers have agreed that the Medicare sustainable growth rate (SGR) formula and annual threat of cuts is flawed, only to respond with short-term solutions and partisan games instead of permanently resolving the problem. Allowing cuts to occur on Jan. 1 and waiting until next year to act will interrupt access to care for Medicare beneficiaries. Failure and mismanagement by Congress in preventing cuts would seriously undermine Medicare’s ability to act as a reliable health insurance program. This is unacceptable. For the health and benefit of patients, Congress must act before Jan. 1! Email and call today at 1-888-434-6200 back to top

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Call Rep. Flake today.

K,

URGENT: The Washington Post reports that President Obama just offered Republicans an “across-the-board cut in Social Security benefits.”

Action is needed now. Can you call Representative Jeff Flake and ask him to publicly oppose the White House deal? Click here for the number and a script.

Ironically, Republican members of Congress may be key to defeating a bad deal, so your call today will make a big difference.

The president’s proposal would cut cost of living adjustments for seniors (and veterans and others). You may hear policy wonks refer to this as “chained CPI.”

The Washingon Post explains, “Adopting chained CPI would, in effect, cut Social Security benefits.” Nobel economist Paul Krugman writes in the New York Times that “there’s no good policy reason to be doing this” and calls it “cruel and stupid.”

Our polls show that by 5 to 1, voters in swing states and even the president’s home state of Illinois oppose these cuts! That means even Republican politicians should care.

Can you give Rep. Flake a call today and ask him to publicly oppose the White House’s proposed deal?

Thanks for being a bold progressive.

— Stephanie Taylor, Adam Green, Matt Wall, Karissa Gerhke, and the PCCC team

P.S. Here are more things you can do today.

1) We’re organizing a “waterfall” of public comments from congressional offices and progressive allies, opposing these cuts. You can follow us on Twitter or on Facebook to witness the growing chorus!

2) Thousands of Americans are promising to hold accountable Democratic politicians who support cuts to Social Security, Medicare, and Medicaid benefits. Click here to join the accountability pledge.

3) We set up an ActBlue page to highlight and reward bold progressive members of Congress who are speaking out publicly today. Check them out and donate $3 to them here.

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Want to support our work? PCCC’s Draft Warren campaign was named The Nation’s “Most Valuable Campaign of 2011”! And our tiny staff ensures that small contributions go a long way. Chip in $3 here.

Paid for by the Progressive Change Campaign Committee PAC (www.BoldProgressives.org) and not authorized by any candidate or candidate’s committee. Contributions to the PCCC are not deductible as charitable contributions for federal income tax purposes.

 

PLEASE DO NOT LET THEM DISMANTLE SOCIAL SECURITY/ MEDICARE!!  WE WILL ALL BE RETIRED/ELDERLY ONE DAY!!  THOSE OF US ALREADY RETIRED OR DISABLED DEPEND ON SOCIAL SECURITY/MEDICARE!!  PLEASE CALL YOUR REPRESENTATIVE TODAY!!  PLEASE REPOST THIS POST ON YOUR BLOG!!  DO NOT LET OUR ELDERLY AND DISABLED BE FORCED TO THE STREET!!