I’ve plunged back into the working world as of 3 days ago and find myself moving along at a fairly decent clip, all considered.

Prior to that, I was like a wounded animal limping through the haze.  Those first few weeks after losing Daddy-O were foggy, painful and just plain surreal.  It’s weird when your world instantly loses one of its constant beacons; you lose your way and have to numbly find your way back to reality – albeit a new, revised reality.  And then you have to get used to that new place.

Nine days after the funeral, during this hazy process, my roommate and I escaped to Vegas for a quick getaway.  Quite frankly, looking forward to that trip actually helped me get through the funeral proceedings in the first place.  Then, once in Vegas, I distinctly felt myself disconnect from the regular drama of my life, and I was thankful for the tangible, much welcomed and much deserved break.  I figured I would get back to mourning a few days later once I touched back down in Detroit.

Surprisingly, though, back in Detroit, I discovered that I had healed a lot between Vegas and home.  Maybe it was the onslaught of neon lights and casino noise or the cool drinks and cloudless skies or simply the fact that I was nowhere near home and so no one knew I was mourning.  Whatever it was, I was able to act normal and literally be carefree for the first time in years!  It was an amazing sensation.

When I returned home to Detroit I found myself shocked – and then saddened – when I realized I had actually somehow recovered beyond my expectations in that one short weekend.  I suppose that after 3 years of pre-mourning the loss of my dad, I was somehow, somewhere deep inside, more prepared to move on than I thought.

That’s not to say that I don’t miss him LIKE CRAZY and sometimes still cry when I think about him!  The difference I’m speaking of is that I can talk about him sometimes without crying – which, I believe, is quite an amazing feet.

When I consider that my family and I could have been dealing with my father having this horrible disease for another DECADE – like millions of families do! – it absolutely blows my mind.  I have NO idea how people survive years and decades of this heart-wrenching disease.  I suppose that’s exactly why 40-percent of Alzheimer’s caregivers die before their failing loved ones.  I mean, seriously, WHO can take all that??

What I have now is scattered feelings: I feel blessed to have been Frank’s daughter, I feel sad because I miss him, and I feel lucky to have been released from this madness.

I find myself listening to oldies music at every possible opportunity – in the shower, in the car, while working.  The music feels like my last tangible connection to him.  Like, if I just smile big enough… and sing loud enough… and think happy thoughts enough, maybe Daddy-O will shine down on me, smile, and dance back…

(NOTE: Frankly Speaking: Alzheimer’s subscribers didn’t receive an email alert upon my last blog entry a few days ago for some reason.  If interested in reading that entry, scroll down one entry on my website to read my dad’s amazing eulogy as delivered by my cousin, Karrie [McLean] Martin.)

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FUNERAL ARRANGEMENTS:  Viewing: Monday, May 3, 1-8 PM.  Funeral service with Military Honors: Tuesday, May 4, 10 AM.  Location: The Heeney-Sundquist Funeral Home, downtown Farmington (www.heeney-sundquist.com).

Suggested memorial tributes to Alzheimer’s Association – Greater Michigan Chapter (www.alz.org/gmc) or for use in completing the movie, Frankly Speaking: Alzheimer’s™ – The Documentary (www.FranklySpeakingAlz.com).

(Real-time Entry)

Somehow the air seems so still these past few days.  A fog shrouds me at times, but inspiration from my dad forces me to keep moving and take action.

It has been nearly 2 weeks since Dad was discharged from Botsford Geri-Psych and was relocated to a new home specializing in Assisted Living for Dementia, Courtyard Manor of Farmington Hills.  This place has proved to be special and every single person working inside its 4 walls appears to be very loving, genuine, patient and kind.  It does my heart and conscience well to be able to trust in them and their facility and the approach philosophy they have for Dad.  During Dad’s violent outbursts, the staff reacts with loving words, kind suggestions and  one-on-one friendship.  I really see a place like this working well, where the dignity of the patient is ALWAYS first and foremost.

The confidence I have in the home has allowed me to relax and step back, knowing that Dad’s in extremely capable hands.  This transition has given me permission and space to focus again on myself and not to worry if I don’t get to see Dad every other day.  Every 4 days or so seems to work out just as fine for both him and me from what I can tell so far.  And he’d be happy to know that this break has allowed me to get my work life kickstarted once again.  I already feel so much more complete and just overall SO much better!!

This is also the perfect time for Mom and I to transition into a VERY WELL-DESERVED vacation getaway to somewhere warm!!!  In just 3 short days I will be turning 40 years old, and my mommie and I will be off flitting around on a beach or a boat somewhere tropical (she planned the trip as a surprise destination for me!), just the two of us, cut off from the drama of back home, getting to know ourselves again and truly being able to unwind.  Ahhhhhhh… We SO deserve this trip!

The attached video is from one week ago.  It contains footage from 2 of my visits to see Dad over the same weekend.  You will be blown away by how he can be nearly comatose at one moment and then dancing the next!  You truly NEVER know what you’re going to get when you open that door.  And when there’s a special day waiting there for you, on those rare days when you get to look into Dad’s beautiful blue eyes, especially on the days when those eyes have sparkle and life in them! – THOSE are the moments we’re cherishing now.  Each little joke, each dance step, each connection is worth a million dollars in gold…  

Hallelujah!!!

My Dad was finally transferred out of Botsford and into his new dwelling at:

Courtyard Manor of Farmington Hills
29750 Farmington Road
Building 1, Room 12
Farmington Hills, MI 48334

(248) 539-0104

He was in the Botsford Hospital Geri-Psych ward for 5 LONG weeks.  It is such a relief to get him out of there!  When he was admitted, he had social skills and interest, you could still usually find a sparkle in his eye, and he had enough energy to want to dance and sing all the time.  Unfortunately, that is not the way he is coming out.

He was supposed to be picked up by ambulance today at 10am and brought to Courtyard Manor.  I was there waiting with my Mom, and around 11am we called the hospital to check on his status.  He had not left yet, so I headed into work.  About 1/2 way to the office my mom called to tell me he was on his way (it figures!).  When I got there, he had already arrived.  (Watch video: AMBULANCE)

When I went inside, he was already in his room.  The on-staff nurse was checking him in when I got into the room.  He was slumped forward and pretty unresponsive.  We tried to engage him in conversations, but mostly, all we could get were some mumbles from him. (Watch video: DAD IN NEW ROOM)

My mom then started to unpack his things, and I stayed with him to massage his shoulders and talk to him.  He has lost soooooo much weight.  I could feel every bone in his shoulders and back.  I told him we needed to start getting some weight back on him and get him back into marathon shape and all he could whisper was “OK”.  He was still pretty unresponsive and sat with his head slumped forward.  I have to be honest, I had a hard time believing that this was really my dad.  I didn’t see any of him in there today and I am very sad.  No one should have to go through this.

My mom told me about a conversation she had with the ambulance drivers before I arrived:

The ambulance drivers told me that everyone at Botsford was hugging him and saying goodbye to him.  The staff told the drivers what a wonderful man Frank is.  They don’t know the half of it.

We got Dad up out of the chair to move when his hospital bed arrived.  My mom took one arm and I took the other, and all he could manage were 1-2″ baby steps.  He was very hunched over, i.e. his spine was almost parallel to the floor.  We asked him to stand up as tall as he could and he only got about 3/4 of the way there, but his head still hung forward.  Once the bed was in, we sat him down again.

My mom sat with him for a while and tried to comfort him.  If you look, you can see in this video that this is very emotional for her as well.  I just hope she continues to have the strength to get through this.  She doesn’t like to ask for help and she usually turns me down when I offer.  So I think we all should probably just insist that she let us take her out and help her get her mind on some other things.  (Watch video: MOM AND DAD)

I left a little before lunch and my Mom stayed with him.  She told me he had a good lunch, used the bathroom, and then went to bed.  It had already been a long, tiring day for him.  On my way back to the office I realized I was hungry so I stopped at Greene’s Hamburgers in Farmington.  Greene’s was a hangout of my Mom & Dad’s when they were in school and dating.  They also had their Surprise 45th Wedding Anniversary Party there just this last August.  Man, it is so hard to believe how much worse my Dad has gotten in just 7 months since that party!!  It takes my breath away just to think of it like that.

My mom said the nurse at the Nursing Home said they may try to reduce some of Dad’s meds to see how he reacts.  I am very interested to see the results of this.  What I would actually like to see is what he would be like if we took him off of all his meds for a week.  I can’t help but wonder how much of his current degradation is drug induced, and not a result of his Alzheimer’s.  But I guess I may never really know the answer to that one.

Heavy in research mode looking for Dad’s next place of residence; trying to maneuver the confusing maze of choices and state regulations.  Psychologically, I’m feeling stronger…  (watch video)

(Real-time Entry)

The experience at the psychiatric ward has gotten worse before getting better.

Following a positive and energized week for me last week, I then visited Dad over this past weekend and was throttled by what I saw.  The hospital had him so drugged (in their ongoing effort to subdue his violent outbursts and reduce his hallucinations) that all he could do was mumble unintelligently while strapped into a wheelchair bent over at the waist unable to hold himself up and drooling. My God, how could there be such a horrific change in just 5 days??  I began struggling with what they’re doing to him, I became very angry at the medical and legal systems for thinking this was the best way to treat a sick person, and I began that oh familiar spiral downward…

Saturday’s visit was the worst one so far, partially because I was so unprepared for what I was going to find. Sunday Dad was still unable to use most muscles in his body but he was no longer drooling and was able to utter partial phrases, which I tried to understand by putting my ear to his lips.  At one point, he said I should call my cousin Debbie.  I said, Sure, Dad, I’ll call Debbie.  And why don’t I call cousin Karrie as well?  She sent you a big hug today and I could tell her you sent her a hug back! He said, Just… call all the girls… and tell them. I asked, What do you want me to tell all the girl cousins? He said, Uncle Frank… is dying. Tears welled up in my eyes and my Mom’s.  We were grateful his eyes were closed so he couldn’t see us.  I said softly to Dad, Is that what you think is going on here, Dad? That you’re dying?? He said, Pretty much… that’s what I see… going on. And he fell asleep and we silently cried.

I experienced a couple horrible days following those visits with a lot of tears and an unmotivated heavy heart.  I only started perking back up after Mom reported last night, Wednesday, that when she walked in for her visit, she found Dad walking around with the help of a nurse and he had been talking about the love of his life, Fran, and then he said, And there she is! The doctor had just changed Dad’s antipsychotic medication from Zyprexa to Risperdal (I believe with the other 5 meds remaining the same) and the results seemed nearly instantaneous and unbelievable! (NOTE: It is believed that by altering communication among nerves in the brain and by altering communication through neurotransmitters, this class of atypical antipsychotic drugs can alter irritability, resistant depression and the psychotic state.)

I have to admit, I woke up this morning a LOT easier and faster!  It does seem that when Dad’s having a good day, I have a good day; and when he’s not, it’s very bad news for me.  Interestingly, I am undoubtedly the only family member who is this affected by it all.  I’m also the most emotional person in my immediate family, besides my father.  And I do spend a lot of time and energy mulling over everything so that I can report back on it for my movie and website.

Does this sensation of me being so empathetic to his situation simply make me a dedicated and loving daughter and a good storyteller as a result of our close relationship? Or is it a detrimental effect that is harming me and my health and my life? My God, do I unconsciously believe that I need to suffer along with him?? I need to figure this one out so that I can support him without being dragged down by the awful set of circumstances that is undoubtedly going to continue to be in our lives.  As they say, I need to get a grip.

P.S. Today the 2 in-home care workers who stole from us went before a judge at The Frank Murphy Hall of Justice in Detroit (home of the Wayne County Circuit Court) and pleaded GUILTY to ALL counts!!!  Their trial and sentencing is set for March 19, 2010.  That news, on top of Dad’s turn around, was the perfect platform for my mother to board a plane today for Florida for some much needed rest, relaxation and decompression.  I hope she finds what she needs.

P.P.S. I wrote this blog this morning.  Below is video following my afternoon visit today with Dad.

(Real-time entry)

Anti-depressants: Day 30.  OMG, the results are A-M-A-Z-I-N-G.  I feel like my old self again!!!  I can’t tell you what a RELIEF that is and how great it feels.  I have been so weighted down for so long that I was really starting to wonder if I was still the same person inside.  I’ve actually been concerned that maybe the sparkly, fun, energetic “me” had left for good.  And, man, I really liked that girl.

However, in the past 3 days I’m suddenly getting out of bed faster, my energy is higher, I once again feel empowered to attack projects, and I desire social interaction.  Basically, I feel re-inspired to get my life under control and I am oh so excited to re-meet myself!!

So here I am at home having revolutionary, life changing results from one lone prescription, this little magical pill…

…And there my dad is in a psychiatric ward with a current combination of SIX drugs coursing through his veins: Depakote for seizures… Lexapro for depession/anxiety… Xanax for anxiety/panic… Desyrel for panic attacks… Zyprexa for psychotic conditions… with a side dose of Ativan for anxiety/depression (as needed by injection – along with a padded cell!)!!!

Seriously?? And somehow the medical and legal communities think that THAT is MORE humane than allowing a patient with a death sentence the legal and morale right to choose their own exit strategy, which may include just ONE pill?  I don’t get this part.  I really don’t.  I don’t get why we think it’s humane to put down our pets when they’re failing and in pain, but yet we don’t allow our fellow humankind that same decency.  Shouldn’t that be everyone’s personal right to choose for themselves?  Wouldn’t it be much more peaceful if a proven-to-be-dying person was to take their last breath in comfort surrounded by their loved ones in a controlled setting?

My dad clearly expressed wanting out before the end.  I believe what stopped him is that he didn’t want to die alone.  A highly social person who thrives on camaraderie and love, I don’t believe he wanted to exit alone after such a beautiful lifetime of family and friends around him.  …And so he stayed longer… which means he eventually lost perspective of time and perspective of his limited window of opportunity for that exit plan… and here we are.  He’s lashing out, harming himself and others.  He’s in pain.  He’s suffering.  He still regularly refers to one-liners about wanting to be dead, wishing he had a gun, wanting it to be over.  But it’s now too late for him to do anything about it, and I think he’s mad.  Mad at the world for not helping him end his misery… and mad at himself for ending up exactly where he never wanted to be, helpless, alone and afraid with no end in sight.

Honestly, as a race, what are we doing to ourselves?

Forgive me if I sound a bit automated with this written recap.  The accompanying video clip will tell you the additional information you need to know.

Unbelievably, it was nearly a week ago that my father was transported by ambulance from Sunrise Assisted Living to Botsford Hospital’s Geriatric Psychiatric Ward for Involuntary Admittance by the State after repeated bouts of aggression and physical violence at the nursing home.  Apparently, this is a new stage he’s at in which you never know when the aggression is going to rear its ugly head.  Our family and friends have never personally witnessed one of these full-blown outbursts.

Dad was initially transported to Botsford last Tuesday afternoon and he wasn’t allowed visitors until Thursday evening when Mom and Frank Jr. went.  Mom then went back on Friday, only to be told that Dad was tranquilized and in isolation and that it had taken 3 security guards to hold him down for the tranquilizer shot.  The next day, I visited Dad at the Psychiatric Ward for my first time and I left with a heavy heart.

The few positive things I can tell you about this experience is that, first and foremost, the point of the hospital admittance is so that Dad can be strictly observed while his meds are tweaked until we discover the magical combination of drugs to return him to a calmer, happier, more peaceful state of mind.  Also, when we visit and explain to him why he is there, he agrees he should be there, he shows a heroic willingness to want to “get better”, and he can’t stand the thought that he might harm anyone (isn’t that SO much more like him?).  Lastly, I had a loving, heartfelt visit with Dad on Sunday – Valentine’s Day.  I will never forget that visit with him.  It melted my heart with love and helped make up for the sadder visit the day before.

However, it is touch and go and today Dad was in isolation again when visiting hours began. Mom and Frank Jr. were there and were allowed to help Dad out of the isolation room, but I am told that it required a wheelchair and that it took nearly half an hour until he was conscious or aware enough to look them in the eye or  respond to them in any way.  Before leaving, Mom gave Dad his first shave in a week while Frank Jr. held him up in a chair.  Mom says she is getting used to all the drama that seems to endlessly come our way… but I somehow just can’t believe it.  Sometimes I can’t believe any of this.

(Real-time Entry)

As if on a mission, I drove back to the nursing home and explained to Dad (like I had promised myself) that he isn’t crazy, he’s right, he isn’t at home, that it’s understandable he’s confused, that he’s safe, and that he isn’t alone.  This conversation took place just before his bedtime and so he wasn’t able to comprehend it all, probably somewhat based on the Alzheimer’s itself and somewhat based on the fact that nighttime is when his brain power is the lowest. 

My brother Todd was with me and together we lovingly explained to him, Just like you’ve had LOTS of homes in your lifetime (we listed 8-10 childhood homes, Air Force bases and marital homes), now this is your NEW home! (delivered with lots of smiles and excitement!)  He said softly, It is?  He asked why.  I explained to him that he has a disease called Alzheimer’s and it plays tricks on his brain and with his memories and that he needs some extra help throughout his day.  This made him cry.  He said he didn’t understand why he had to be in “this place”.  Todd and I explained that we all have jobs we have to go to during the day and, because we would NEVER leave him alone, we found some wonderful people who can take care of him while we’re at work.   He said Okay through his tears.  Brilliantly, Todd then explained to Dad that, just like a magic trick, if we weren’t here, in just a little while… you never know when… ABRACADABRA – POOF! we’ll appear!  This made Dad laugh simultaneously while crying.  I said, You know what the MOST exciting part is?!  Dad said, What?  I said, You have your VERY OWN bedroom… with a brand new bed – and a DRESSER!!!  He half-chuckled and said that was very generous.  I asked him if he wanted to see his new bed and have Todd and JoJo tuck him in it.  He said okay and followed us in the bedroom while holding our hands.

Through tears and confusion, we got him into bed, tucked him in, and I explained to him one last time, Now, Daddy, remember… when you wake up in the morning, we won’t be here.  You’ll probably get up, get showered, get dressed and maybe even have breakfast and then all of a sudden, POOF! we’ll be here!  He asked what WE were now going to do.  Todd said, Well, I’m going to go home to MY house and get into MY bed.  And Joleen is going to go to HER house and get into HER bed.  And you’re here at YOUR house and we just tucked you into YOUR bed!  🙂  I explained one more time that we wouldn’t be here when he woke up but that it would be okay and we would arrive like a magic trick really soon!  He said, And then what will we do?  And I said, We’ll PLAY A-L-L day!  We’ll spend the whole entire day together and have adventures and do anything we want, and it’ll be GREAT!  With that, we kissed him goodnight, turned out his light, wished him sweet dreams, and walked out praying for the best.

That was 3 nights ago.  Dad has told me numerous times since then how confused and afraid he is, how he doesn’t understand why he’s “here”, and he has asked me if I understand what’s going on.  I keep telling him in a very gentle voice that he has Alzheimer’s and just needs a little extra help with things, like sometimes finding the bathroom or cooking food to eat, and that here he will ALWAYS be safe and taken care of, even when we have to go to work.  He once asked what HIS job is, and I told him it is to stay here, be strong, believe in God, remember we love him, and to try to find peace.

Two days ago after trying to preoccupy him during the day with ‘50s and ‘60s songs from the jukebox, I finally suggested we take a time out and I led him to a quiet room with gauze curtains for a door, a rocking chair, soft lights and a CD player.  I put in an audio CD of Sunday’s church service which he hadn’t attended.  His last church service at his beloved Renaissance Unity Church in Warren was on Christmas Eve, a week before coming here.  In the rocking chair he closed his eyes, and I explained whose voices he was hearing on the CD while he responded softly, Yes, I know, thank you.  I recognize that.  About 5 minutes into the CD, the most amazing thing happened.  My dad opened his eyes, found me sitting next to him, looked me deeply in my eyes, and whispered softly but intensely, THANK YOU.  He closed his eyes again and I held his hand for the next 40 minutes and he went the whole time without crying.  It’s funny, everyone’s been so busy trying to distract him, amuse him, cheer him up and keep him busy, that I think we’ve all mistakenly forgotten to give him access to his faith and the quiet space to go deep into his spirituality.  I hope this is something that calms his mind every day from now on.

That night after dinner, we scrapbooked a photo shadowbox to hang outside Dad’s new bedroom.  We made it in front of him, hung it for him to see, and explained that it will help him find his room.  I told him that this new house didn’t feel like a home yet because it was missing an essential element – pictures on the walls!  He seemed to like that idea and the next day we hung over a dozen framed photos throughout his bedroom.  This way, instead of waking up afraid among four plain white walls, maybe it will seem homier and he’ll recognize some of the images and be reassured.  He awoke yesterday morning and then again yesterday from his afternoon nap and didn’t seem as afraid.  Then, Mom and I put him to bed last night and for the first it was without tears in his eyes.  It was a better day!  However, a checkup phone call at midnight informed us that he was back up, confused and sitting in front of the TV.  My poor Daddy-O is SO tired!  He has had so many sleepless nights back-to-back and yet he can’t sleep!  This must just add to his exhaustion and confusion.  Mom was put on the phone and Dad told her in a very tired, soft, dejected and defeated voice, Frances, I just don’t know what I’m doing here…  She lovingly told him that he had to get some sleep because his grandson Frankie was coming in the morning to play with him and he needed his energy.  He said okay but you could tell he hadn’t budged from that couch.  Mom then told him to go lie back in bed, close his eyes and meditate and think about God.  He said okay and hung up.  A half hour later we were told he was back in bed.

But the poor guy is living a hell on earth.  Every single time he awakes he has to figure out his surroundings all over again.  He has to understand where he is, why he’s there, who these people are, why no familiar faces are around, and sometimes he also starts wondering what he’s done to be stuck here and to deserve this treatment. It’s worse than the movies Ground Hog’s Day or Fifty First Dates.  It truly is a frightening, undignified process that I am positive Frank Firek does not deserve.  No one deserves this.

Based on some very bad advice we received, we had taken Dad OFF of his anti-depressants prior to moving him into the nursing home.  A very BIG MISTAKE we’ve learned!  He is now back on his anti-depressants, plus anti-anxiety meds twice a day, and sleeping pills will be added to the mix today.  We are hoping his tears will fade more and more by the day.  Visitors definitely help pick his spirits up and we hope for a constant flow of familiar faces for him!  Of course, he doesn’t always remember the next day that you had stopped by, but he’s in a world now where he’s forced to live in the moment and enjoyable visits definitely help make his day.

Amazingly, I made it almost through the entire day yesterday without crying (except when Mom and I cleaned out Dad’s bathroom).  I hoped maybe I was on to something new, a new phase of recovery.  But this morning I awoke with dread in my heart and couldn’t drag myself out of the covers for over an hour.  Over coffee, the tears started.  I’m not sobbing today, but a constant flow of slow tears keep finding their way out into the world.  I am grieving, I am tired, and I am so incredibly sad.  Just like my dad has to re-figure out his world every day, I now have to figure out mine, too.

I have become quite a recluse – for me, anyway.  I feel as if I’m home all the time – whenever I’m not at work or family events or spending time with Dad, anyway. I just feel as if I don’t have any energy left after my obligations are through. 

Typically, when I walk in the door, I have a long list of things I should/could do, and then my butt hits the couch and all bets are off.  Once I’m shut in that house, I’m not going out again until I absolutely have to.  I busy myself at home a lot, watch a lot of TV, read books, avoid almost all phone calls and hide out.  It’s been nearly two months since I filed for divorce and I’m not feeling the desire to do much.  I think A LOT, read a lot, mull over my situation a lot, wonder where I want my life to go, reflect on how I got here, catalogue the mistakes I’ve made, note personality traits I might need to change… then I think about my dad, how precious and fleeting life is, how painful this all is… then I feel so all alone.  And then the phone rings, and I choose not to pick it up.  There are so many people reaching out to me.  I know I should pick it up and reach back.  But I just feel like I want to be alone for a while, like I have a lot of internal work to do.

I’m exhausted and lost and I’m taking full advantage of my new cozy, warm home. 

I have recently picked up Dr. Richard Taylor’s book again, Alzheimer’s: From the Inside Out.  I find it fascinating to be able to get a glimpse of Alzheimer’s from a patient’s point of view.  It’s probably the closest I’ll ever get to seeing my dad’s point of view.  And if I can just understand it and where they’re coming from better, maybe I’ll be able to relate better to my dad along the way.  And so I force myself to read it, even sometimes on days when I don’t want to because I know it’ll depress me.  But I can never read many chapters in one sitting – it’s too emotional.  I find that I put it down for days or weeks at a time.  Then, when I feel stronger, I force myself to pick it back up again.  The other book my mother gave me, The 36 Hour Day, is just WAY TOO HEAVY for me right now. 

I’m still trying so hard to get back on my own two feet, live independently and await my divorce.  I can’t take on the whole world all at once.  I have to limit my intake for my own good.