My "Most Interested Party" Theory: Why the MIP Theory is Essential to Advocates...AND to Life!

Many people have told me that they thought it's been remarkable how involved I've been in Michael's ICU  and Rehab experience, not leaving his side if I could help it, assisting the nurses, prodding the doctors.  

While I admit I'm grateful to have discovered the important gift of what a strong stomach I have for messy medical stuff, my actions were determined largely by a theory I developed years ago.

I call it my "Most Interested Party" Theory and it goes like this:

The person who is the Most Interested Party (MIP) will get something done more resourcefully, more quickly and more effectively than any other party involved.  

Also, the MIP will make sure that Something is done - as opposed to Nothing is done, Nothing often being perfectly acceptable to a lesser interested party.

Collorary: 

One's willingness to allow any another party to handle any action that directly and undeniably affects you is determined by:

1. Hitting a "Knowledge Wall," i.e., it requires expertise you don't have, such as medicine, dentistry or computer hard drives (although Google and other search engines have brought fast personal education in quite nicely to delay this factor)

2. Virtual Helplessness, i.e., a rule or boundry you can not control or cross, often connected with a government or any other bureaucracy that has guards present

3. Real Trust, i.e., the other person cares as much as you do about the result or is evolved enough to really care about the fact that you care

4. Diminished Passion, i.e., you don't care that much, so the Result Risk (RR) is acceptable

This theory has stood me well over the years, especially as an advocate for someone I love (like Michael), especially when at the mercy of a hospital, which, after all, is only staffed by mere and extremely busy human beings.

Control Freaks and Others Love the MIP Theory 

Hm! I can hear you asking, is there a mild scent of Control Freak coming off this theory?  No, I declare, not for me.  Normally, I'm kinda easy-going and laissez-faire.

I do admit that the MIP Theory is indeed the underlying belief system for any respectable Control Freak, however, you don't have to BE a Control Freak to use my Theory.  

You simply have to have observed that you've been disappointed by other people's lack of priority to deal with something you thought was important.  I felt anger about this when I first discovered it.  Why don't they care as much as I do?  How dare they?

But now I feel no rancor is needed and consider it a simple Fact of Life: Nobody cares more than you do about what you care about.  My theory just stands to reason.

So, I ask myself in any given situation, "How much do I care?"

If the answer is "Not that much" or "Somewhat," then I'll take my chances delegating, suggesting or asking.

BUT...if the answer is "Passionately!!!!!" then I know what I have to do.

Everything I can.

The Gym...OR...Pills?

I've got weight gain...Michael's got muscle atrophy.

Is there a pill we can take to make it go away?

I actually googled the weight reduction aide Alli today, which works by "decreasing absorption of fat by the intestines," and reducing the calories you absorb - IF you're already doing low fat, low calorie and high exercise.

Which I am - since the healthy lifestyle is my preference - so, it sounds tempting. A little boost would be appreciated.

Immediately, I found a report from the Mayo Clinic - whom I respect - saying that this expensive pill might only take off an extra six pounds a year. And on days when you might eat more than 15 grams of fat, might cause "unwanted effects" like urgent bowel movements, diarrhea, and gas with oily spotting.

I immediately unwanted it.

Then I thought - hmmm! I wonder if I should take something thermogenic to really boost my body's fat burning ability?

Then I found a report from Dr. Andrew Weil - whom I respect - saying that thermogenics, which uses stimulants to boost your metabolism and suppress your appetite, might create short term weight loss, but "you won't maintain this weight loss without eating less and exercising more" - plus - "several of the ingredients are potentially dangerous."
Sigh!

So today, Michael and I had appointments with Trainers at the gym - his trainer having special expertise in working with people fresh out of medical rehab. He actually did a plank today - and the recumbent bike. Gym-Boy is back!

My trainer, the amazing Debbie, is five years older than I am (and I'm 57 going on 40) and leads the "I Hate to Run" class, as she is an advocate of slow, easy running. That made me look at her warily.

Then she said the magic words to me: "When you run, you can eat anything."

I looked at her thoughtfully. "But I don't run," I told her, "unless someone is chasing me." I explained that I was the fat girl in P.E. class who dreaded the words "Take a lap" even more than "Let's pick teams."

But I will say, I am going for a natural thermogenic...

"Trust me," said Debbie.

So today, for the first time in my life, I jogged in two short spurts on the treadmill. Just like those fit, young girls I see who actually sweat.

I was surprised. I was not out of breath or uncomfortable, yet my always excellent heart rate soared thermogenically. And, after months of sitting, it felt good to move. Debbie said that those two short bursts actually took me a quarter of a mile. Hmmm.

So I'm going to let Debbie have her way with me. Cautiously. Slowly. Guardedly.

Because she absolutely guaranteed me there would be no gas with oily spotting.

Patricia's New Magic Running Shoes -
Expensive, Comfortable & Thermogenic

Flirting With Reality: Just Interviewed by Alan Cohen on his Hay House Internet Radio Show

Flirting With Reality: Just Interviewed by Alan Cohen on his Hay House Internet Radio Show
www.Tiny.cc/weightlossinterview

Just Interviewed by Alan Cohen on his Hay House Internet Radio Show

Inspirational speaker and author Alan Cohen had me as his guest on his Internet radio show on the Hay House Wisdom Community website as a weight loss expert ( ironic for me, since my job now is to put weight ON someone, at which I've been very successful: Michael's up from 110 to about 130 now - yay - and I'm up about 15 pounds - damn!).

It was good to be back in the saddle as in inspirational speaker - especially as this is an unexpected season of my life where I get to walk my talk. Makes you think about what you believe. And I stick to my firm belief that you have to focus on health - not weight - or your inner rebel will show up immediately and stay for dinner.

The interview will be available at HayHouseRadio website at for two weeks, starting May 7th (and then you need to have an ID/password to access archived interviews) - but I'll publish it on my website soon, as this blog won't accept the link.

So if anyone out there is visiting this blog for the first time, I want to give you the fabulous piece I read on air that's about self-acceptance. The author was unknown, so I cleaned it up and rewrote it. (Note to authors: ALWAYS put your name on your work!)

WHAT WE CAN LEARN FROM THE ROSE

Author Unknown

Rewritten by Patricia Alexander

When we plant a rose seed in the earth,

we notice that it is small

…but we do not criticize it as rootless and stemless.

Rather, we treat it as a seed,

giving it water and nourishment.

When it first shoots up out of the earth,

we don’t condemn it as immature and underdeveloped;

nor do we criticize the buds for not being open when they appear.

Rather, we stand in wonder at the process taking place and give the plant the care it needs

at each stage of its development.

The rose is a rose from the time it is a seed

to the time it dies.

At all times, it contains its whole potential within it.

As a result, it is constantly in the process of evolving.

Yet, at each stage…at each moment…

…it is perfectly all right as it is.

I believe that it is only from this point of self-love and acceptance that you can become the healthiest version of yourself you can be. We are all roses at our own stages of life, thorns and petals all part of the deal!

ICU Visit For Closure

We returned to the Intensive Care Unit at Twin Cities in Templeton to Say Thank You! We're Alive and Well - Thanks to Your Care! (The lady on the far left is the caring and resourceful Anna, who'd bagged me my illicit cot, bless her!)
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We knew we had to do it.

It was good manners. It was an act of encouragement for their souls and ours. It was closure.

We knew we had to back to the ICU where Michael had spent 33 fateful days and nights.

Plus, we had a 5-pound box of See's Candy to give the staff, the grateful compliments of Bill and Susan Burgos. (Do you know how many free samples they offer you while they're filling a 5-pounder? Oy! Don't ask!)

We both had a certain amount of trepidation about going back. Although Michael has no memory of that time, he feared what he might see behind the ICU double doors. And as for me - I remembered everything.

None of the doctors who treated Michael were there, but I knew all the shift nurses - and they were completely THRILLED to see us. They had just released several patients and the ward was light - so they could spend time with us and it was less stressful for Michael (no one yelling, no buzzers or bells. It was meaningful to the nurses to see Michael walk in on his own power, a little thin, but obviously doing so well. He thanked and hugged them multiple times.

They hugged me lots and told me how good it was to see me rested. "She was exhausted!" They exclaimed to Mr. B.

They said many complimentary things to him about me. "She wouldn't leave your side, even to go to the bathroom unless someone was with you," remembered one nurse. Michael smiled lovingly and squeezed me. My face trickled the whole time like a leaky boat.

The isolation room with the outer alcove for changing into gown/gloves/mask was empty and wide open, so I took Michael in and showed him where we'd spent most of our time. As we left, I said to the nurses, "Hey, someone left their slippers under a chair in that empty room."

"Oh that's not an empty room," they answered. "They took that patient out to run a test."

Whoa! When we were in that room, you could not have mistaken it for empty. The chair bed in the corner covered with blankets...bags of food...a suitcase...an iPod...cards taped to the wall. I sighed, hoping it meant that the occupant wasn't going to be there long and not that he didn't have someone there for him.

Well, that hadn't been so bad. Closure!

BAD REPLAY.

Then we went downstairs and Gerri, the lovely lady in Admissions, called us over to sign our book. She'd come up to the ICU several weeks in, saying God had put us on her heart and that she'd been praying for us. She brought us a book by Max Lucado about hope, and I'd given her a copy of our book. So many people like Gerri with generous and spiritual hearts held us up during that difficult time.

So now we were standing in her office and she was telling us how she'd known Michael was extremely sick when we'd first come in. She talked on for a while and Michael indicated he needed to sit down. As we both slid into the two chairs on the other side of Gerri's desk, I suddenly had a flashback. It was a physical duplication of how we started the whole nightmarish journey.

I think I almost started to hyperventilate. Gerri had to take a call and I clutched Michael's sleeve. "I need us to leave," I whispered urgently - so we stood up. Gerri got off the phone, grabbed our hands and prayed with us and we all hugged - and finally we left.

All in all, Michael found the whole visit less disturbing than he'd feared - but I was kind of a wreck for two days. I felt overwhelmed, sad and fragile. To relive that moment was So traumatic.

Emotionally, Michael took care of me. He was so sweet and attentive. He's intensely aware that I'm recovering as much as he is and we are definitely taking care of each other. I went into a cocoon mode as much as I could over the next two days, hanging out in our bed, watching my Gilmore Girls DVDs, doing puzzles, reading, eating (my lifelong standby comfort), and cuddling with Michael as he stroked my forehead, and playing "Stuffy Theater" with Michael and our stuffies. In other words, I turned to all my comforts.

Hey, now's definitely the time to walk my talk.

Two days later I awakened feeling more ready to face the world.

It's not lost on me that there's some kind of strange symmetry to us starting and finishing the ICU part of this journey in those two chairs.

I'm just so relieved to be on the finishing end of it.

1st Entry From Michael Himself!!!!

DICTATED TO PATRICIA BY MICHAEL:
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It has been made clear to me that while I was in intensive care, my organs failing, my body reeling, that my spirit needed to make a decision.

Should I go to the light? Or return to that body, with all its challenges, and live out the remainder of my life in physical form.

In many ways, it seems counter-intuitive to return to physical form and face the long journey of regeneration, retrieving my lost abilities from the stroke, existing for months in a weakened 112-pound body, working to regain some semblance of my pre-illness self.

The answer, simply enough, is I came back for love.

To express love, to receive love, to know love, to share love. I have been blessed with a life enriched with sweet individuals who have reserved special little places for me in their enormous hearts.

And I am especially fortunate to have one particular person - my "Whosis" - with whom I share a daily life exchanging great fondness and affection. Patricia and I share the deepest of joyful soul connections and, in addition, we find great pleasure in each other's personalities.

How lucky am I to spend my life with a person I love and like - a person who entertains me, who stimulates me - who always bring a smile to my face - who can make my blood boil (PATRICIA: Is that for being sexy or angry? MICHAEL (LAUGHS): We'll leave that up to the interpretation of the reader!) - a person who sweetly purrs next to me at night (PATRICIA: You mean snores!) and giggles at my humor during the day.

A person who's loyal beyond question, steadfast beyond all reason, a person who has displayed for me the truest meaning of commitment, the dearest friend a person could ever have in a lifetime - and my forever sweetheart - soon to be my Mrs. B.

So there! I came back for love.

And I don't regret it. (Although next time my spirit inhabits a body, I'm going to order bigger biceps and two functioning kidneys.)

"Why me?"
There is a voice inside of me that does express itself and asks "Why me? Haven't I had enough physical distress and challenges for a lifetime? Why all this crap now?"

I usually reframe the extraordinary health challenges that have been brought my way as some of my most profound life lessons. They soften me by making me more empathetic, both to myself and others. I tell people I wouldn't wish this suffering on anyone, much less myself.

That always moves me, because I feel a great compassion for self...which is my biggest life lesson.

My latest tussle with the nasty H1N1 virus has afforded me the opportunity to be of service as a spokesperson for vaccination. I have a simple message for everyone: Why risk spending 40 days in Intensive Care when you can just get a shot and protect yourself?

If my message reaches anyone and convinces them to be inoculated, then my suffering has not been in vain.

(How's that for a biblical semblance!)

CA Dept. of Public Health Wants Michael to be Poster Boy for Vaccinations!!

Wow!!!! I'm Going to Be the New Poster Boy for Getting a Swine Flu Shot!!"
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This just in! Got an email from the Public Relations firm that represents the California Department of Public Health. It seems someone at the CDPH saw the newspaper article and suggested we be contacted to see if Michael would be interested in participating in some media interviews.

And, unlike the SLO Tribune, they like that we wrote a book about mind/body/spirit health!

As you can imagine, Michael was on board - and you know I was. (They're interested in my take as a caregiver who went through the experience with Michael - and as an inspirational speaker who addresses caregiver groups.) They promised not to schedule any phone or article interviews for early in the morning (which Michael would have requested even before the Swine Flu) and if there's TV, we can probably do it from the San Luis Obispo TV station.

We connected with a very pleasant young woman, Kierstan DeLong, who came to realize quickly that we already had some media experience from promoting The Book of Comforts.

"You're making my job so easy!" she said with appreciation. Our pleasure, Kierstan!

And it really is. Our hearts are to use our painful experiences to help others avoid repeating them. And if we happen to promote the book and speeches and workshops along the way, well, it's in alignment with our life's mission to encourage others to realize the healthy power of being Reasonable Hedonists.

NEW SWINE FLU OUTBREAK COMING
This is all happening because the CDPH is expecting a third outbreak since the public is suffering from the delusion that the Swine Flu has run its course (they can't give the vaccine away)...and with spring break coming.

What people don't know is that it takes two weeks for the vaccination to take effect - so when it comes to students - coming to your community soon - ideally, the Health Dept. wants them to get vaccinated before spring break. (People also don't know that if they do get a cold or flu that they should see their doctor early, not late, to get the Tamiflu, just in case, as it's the only thing that can knock the Swine Flu back to a less severe version.)

The PR firm is planning a wave of media featuring a doctor. But they know that the public also wants to hear from a non-doctor person, too - and that's Michael.

I KNOW I SHOULD GET A VACCINATION, BUT...
Many of you have written to us that our situation started a fire circle of your friends getting vaccinated. But I can also tell you that I have had people look me right in the eye, express sincere sympathy for what we've been through - and then admit they are NOT going to get vaccinated! (Hold me back! Hold me back!)

You know, I understand people waffling about getting a vaccination, since many of us are suspicious about them or have heard stories about bad side effects. However, after what Michael and I have been through, I couldn't be more clear about how much better it is to GET THE DAMN VACCINATION!!!

Triple that if you have a compromised immune system...
...or live with someone who does...
... or work in an environment where you come into constant contact with people.

And by the way, let me define "compromised" or "at risk" immune systems: that's when you have a health-affecting contributing factor, such as being a SENIOR, OBESITY, CANCER HISTORY, DIABETES, HEART ISSUES, LUPUS, ASTHMA, ANEMIA...you know - anything on that noxious list they have you check off when you see a new doctor. Sadly, it's rare to be able to leave all those boxes unchecked, isn't it?

FIND YOUR LOCAL SWINE FLU VACCINE HERE
Kierstan sent me this fabulous link to find where you can get your vaccination:
Check out the vaccine locator tool at www.cdph.ca.gov. You can simply type in your zip code for a comprehensive map and list of both free and paid vaccine clinics near you. You can also text 30644 and enter the words NO FLU and your zip code to receive a message back with the nearest vaccinator information.

Please write me at patricia@patriciaalexander.com or comment on this blog to say you've gotten your vaccination. It will encourage me not to throttle people when they don't.

P.S. - Special thanks and kudos to my Weight Watchers Territory Manager, Bobbie Surra, who was touched by our troubles enough to arrange to offer H1N1 vaccinations to people attending the recent Open House at various Weight Watcher locations. Bobbie, you rock!

(And I look forward to ending my Leave of Absence from leading WW meetings in about a month. Hugs to all my members and thanks to Terrie and Juana for taking over my meetings.)

Home Again, Home Again - Jiggity Jig!

Isn't Michael the Picture of Cozy?
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There's our kitty Valentine in her bed in front of the fireplace...there's fattening food on the table and - what do we see? - oh YES - a giNORmous bottle of CHERRY COKE! Oh, and a woman who is waiting on him hand and foot - AND LOVING IT! What more could a man want?
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There's only one word for the last three days, which was our first time home together after 55 days of medical hell: Dee-lish-ious, Dee-lerious and Dee-lightful.

I will say I worked really hard - to ignore all the chores that surrounded me, that is. And they are plentiful. Piles of mail, piles of clothes from our double unpacking, piles of unpacked office boxes deserted in mid-move. Oy!

But being the Reasonable Hedonist I am, I delicately shoved it all aside with a nudge of my toe and walked directly to the couch from the bed, and from the bed to the couch, with a few stops in the kitchen.

What a joy it was to cook my sweetie's favorite foods! He still doesn't eat large quantities - and never did before this happened - but he does eat often. A favorite nosh is a corn or flour tortilla with some shredded Mexican cheese melted on it, chunks of avocado, spread with salsa and sour cream. (And for this he thinks I'm a brilliant cook.) Oh, and mini-hot fudge Sundaes.

GRAB BARS IN THE SHOWER
We had Deric the always-good-smelling handyman install some grab bars in the shower and Mr. B. had the delirious pleasure of showering for as long as he liked and without a fully clothed nurse's aid instructing him to wash his private parts - while watching to see that he does.

(Although I do remember that when the nurse's aid was lovely Linda helping in the two-minute shower, she was constantly giggling at high volume - but what the heck - I can deny him nothing.)

Coming home, Michael had some anxiety about being able to climb our stairs. He thought he might have to sleep downstairs, in spite of dreaming wistfully of our king-sized bed. But since the stairs are not steep and have two landings, he did just fine with them - as, frankly, I knew he would.

I will say that our legs are sore from going up and down the stairs many times. Yes, mine too - as I'm out of shape after all that sitting. So - home IS rehab.

OUTPATIENT REHAB STARTED TODAY

But there is real Rehab and it started today in Paso Robles. Here is Maria, the Physical Therapist, assessing Michael's balance and strength. He did really well. She asked him to walk around the gym area for six minutes - and although he didn't know if he could do it, he did it.

I will say that Michael was fairly traumatized after two hours of Occupational and Physical Therapy, mainly because they had to assess him. While they look at it as "strengths and challenges," he mainly felt demoralized with how thin and weak he is in comparison to how he was just two months ago.

I tried to encourage him to put it into perspective while also trying to validate his feelings. Tricky stuff. Kind of like poking a bear while explaining that the poking is good for their hide.

Thank goodness I make a mean mini-hot fudge Sundae!

Here's the SLO Tribune Article About Us Today!

Well, the article finally hit today - and we made the FRONT PAGE!!
We thought it was cool to see our own mugs through the newspaper dispenser machine window. Check out the article below or at: http://tinyurl.com/tribunestory .

Let us know what you think. We think it's sweet, focusing on our love and a new understanding of the importance of vaccines when you're immune-system compromised. It's a little underdone, but with only two Glaring Errors:

1. Michael went down to 110 pounds and is now around 114-116, NOT 124 - and -

2. It was NOT a medically induced coma, which is different from the deep sedation Michael had.

... and three Major Omissions:

1. Hello! Most newspaper stories mention your occupation! Award-winning local authors here! (Get The Book of Comforts by order in any bookstore or at EarthTones in Paso Robles.)

2. It's a shame they wouldn't give the reporter the space to write about Chris Van Huff coming to inspire Michael.

3. A sidebar showing where to get your Swine Flu shot would have been beneficial to the community AND letting people know to see a doctor quickly to get Tamiflu meds to keep the flu from getting to hospitalization stage, Swine or not.

See my added comment to the article at the end that will at least show up online and clarify some of that!

Published: Sunday, Feb. 21, 2010

Paso Robles man fights for his life against swine flu

A Paso Robles cancer survivor who’s been through more than his share of medical ordeals is recovering from his toughest one yet: an intense battle with the H1N1 virus that brought him to the brink of death

By AnnMarie Cornejo | acornejo@thetribunenews.com

Michael Burgos’ last memory before spending 33 days in the intensive care unit at Twin Cities Community Hospital is of playing golf with friends.0

That was before he was infected with swine flu.

The ensuing battle to survive is something he bears physically. After losing 24 pounds in almost as many days, Burgos is now frail. He walks gingerly because his coordination is haphazard, the effect of complications brought on by the illness that almost killed him. Even his 124 pounds seems a lot to carry.

Click image to see caption

Swine flu patient Michael Burgos acknowledges his longtime companion, Patricia Alexander, from his bed at Twin Cities Community Hospital in Templeton in January.

By David Middlecamp | dmiddlecamp@thetribunenews.com

larger version purchase prints

A pair of shoes from well-wishers offers messages of encouragement to Michael Burgos.

By David Middlecamp | dmiddlecamp@thetribunenews.com

larger version purchase prints

• 
• 

“I keep thinking this is not real,” he said. “This can’t be happening to me — it must be just a dream because I woke up like this.”

Burgos, once an opponent of vaccines for the flu, now champions getting them.

The life-threatening experience Burgos has endured remains largely obscure to him. The 51-year-old Paso Robles man remembers little about the last few months. His longtime companion, Patricia Alexander, shares pieces of the ordeal with Burgos as he is ready, and has chronicled the experiences on her blog. Burgos plans to read it one day, but for now he remains focused on re-establishing his health.

Healing will take time. In addition to learning to walk again, he must also learn to read and write once more. A stroke caused by the flu affected the motor skills on the left side of his body and weakened his eyesight.

“It is really shocking not to be able to write your own name,” Burgos said. “I was a gym rat, and now I can barely walk. It is freaky.”

Childhood cancer

This isn’t the first time that Burgos had to fight serious illness to survive.

When he was only 2 years old, he lost a kidney to cancer and went through radiation treatments. The cancer came back in the form of lymphoma when he was 28, and he underwent seven months of chemotherapy.

Since then, Burgos has lived a regimented lifestyle: routinely going to the gym, eating well and sleeping often. He rarely got ill, and never contracted the flu or the common cold.

“I was in perfect health,” said Burgos. “I thought I wouldn’t get it. I learned a big lesson.”

Now he is drawing on inner strength to survive again.

“I have to bear down and focus inside,” Burgos said. “It takes a lot of energy on my part to stay optimistic and look beyond the stresses of right now.”

Numerous complications

Alexander spent countless nights sleeping on a cot next to Burgos in the intensive care unit. The story she tells differs vastly from what Burgos is able to share — it includes painstaking details of every medical procedure and scare along the way. And there were many.

Burgos suffered complications from the swine flu including pneumonia, kidney problems, a medically induced coma and a small stroke.

He was intubated twice to help him breathe and fed for nearly a month by a feeding tube in his stomach.

“I couldn’t help but feel that the lifesaving things were just becoming the next torture,” Alexander said. A happy ending didn’t seem feasible, she said. “At one point I was ready to let him go because he was suffering so much.”

Burgos, who spent several weeks rehabilitating at a hospital in Santa Barbara, was allowed to go home four days ago. There is still a long road to complete recovery with at least a year of additional therapy needed.

Now taking the vaccine

Burgos said he was reluctant to get the H1N1 vaccine because he was so healthy and couldn’t conceive of purposely putting a virus into his body.

“I read about the virus in the paper, but I really thought there was no way that I could be vulnerable to it,” Burgos said.

He now advocates for the inoculation and urges everyone he knows to get it. He’s even signed up for the flu vaccine — something he has avoided the majority of his adult life.

“The problem with illness is not the toll it takes on a sick person,” he said. “It was harder on Patricia than me, and it was difficult on my family, who had to all watch a loved one get so ill.”

The illness has brought him and Patricia closer, he said. The two plan to get married later this year.

“Patricia has been here every step of the way, even when I was not aware of it,” Burgos said. “Family members tell me how much she was there, and it makes me love her all the more.”

Reach AnnMarie Cornejo at 781-7939.

HERE IS THE COMMENT I ADDED TO FILL IN SOME OF WHAT GOT LEFT OUT:

patricia7771 wrote on 02/21/2010 03:42:54 AM:

Additions to the story on us: This medical nightmare has challenged us to walk our talk, since we are co-authors of an award-winning inspirational book, The Book of Comforts: Simple, Powerful Ways to Comfort Your Spirit, Body & Soul (at Earthtones in PR). Patricia is also a motivational speaker & local Weight Watchers Leader; Michael is a retired Marriage/Family Therapist.

Our work has given us a spiritual perspective on this strange twist of life, heightening our gratitude, bringing moments of humor, pathos & beauty. Read our blog at patriciawords.blogspot.com.

1 correction: Michael is down to 114 pounds, but eating heartily with a special joy from Cherry Coke, which he craved incessantly.

Also, our thanks to Chris Van Huff of Templeton who miraculously walked into Twin Cities as we were asking for him, & encouraged Michael, since Chris survived everything Michael was still fighting.

Kudos to the ICU staff for saving M's life & getting me an illicit cot, & to our fab friends & family.

Last Day Visit to the "Dizzy" Doctor & Top 10 Things We Won't Miss About Rehab

MICHAEL GOES "WHEE! HANDS UP FOR THE 'E' TICKET RIDE" ON THE CHAIR LIFT INTO THE TRANSPORT VAN FOR A TRIP TO THE "DIZZY" DOCTOR
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Our last day we got to take advantage of the opportunity for Michael to see a doctor who specializes in dizziness. She felt he had a form of vertigo that can be caused by a small stroke. It can usually be corrected with specific movements of the head to reposition crystals in your inner ears. Today, she did one side, and she'll do the other side in a couple of weeks.

No, I am NOT making this up. (Google "BPPV" if you don't believe me!)

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Top 10 Things Michael Won't Miss About Cottage Rehab (with Apologies to David Letterman)
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10. The guy sitting next to you at breakfast has his left hand resting in his scrambled eggs.

9. Getting stool softener, whether you need it or not.

8. The Nurse's Aid leaning over you to check your Blood Pressure just finished a plate of spicy enchiladas for lunch.

7. Tasteless mashed potatoes and gray gravy with every meal.

6. An alarm tab attached to your shirt at night that pulls out when you roll over and screams like a fire alarm, giving you a heart attack.

5. Having at least 3 people be alerted to your bodily functions, in detail, with viewing privileges, at all times.

4. The guy sitting next to you at lunch just hocked up a lung.

3. The 5 a.m. blood draw, whether you need it or not.

2. Sounds like the incessant dinging of a call light being ignored by the nurse's station; the clanging of metal trays being dropped; the midnight cocktail party at the nurse's station across the hallway; the banging of the waste baskets as they change them...at 1 a.m.

AND #1. The guy sitting next to you at dinner has his left hand resting in his mashed potatoes and gray gravy and his right hand resting in his applesauce.

AS WE LEAVE REHAB, WE MURMUR OUR FAVORITE FOND FAREWELL (coined on our first "Phase Two" trip outings to restaurants):

"See Ya, Suckers!"

Sent from my Verizon Wireless BlackBerry

WE'RE GOING HOME THURSDAY!!!!

(OOPS! THIS IS WHAT HAPPENS WHEN PATRICIA SENDS A PHOTO FROM THE BLACKBERRY - THIS ISN'T THE ONE I THOUGHT IT WAS!)

LET'S CALL IT "MICHAEL AND PATRICIA GRINNING DOWN AT THE WHEELCHAIR MICHAEL WON'T NEED VERY SOON."

We went to Solutions Rehab for a tour...we saw...we talked...we reconsidered...we decided: we're going home!

Sister Karen researched and discovered an out-patient physical therapy place in our own home town of Paso Robles (yay, Karen!) that does physical and occupational therapy - and there's a well-recommended speech therapist (for spatial and cognition work) in San Luis Obispo.

Although it was worth considering the value of 6-8 weeks of 8 hours a day at Solutions, Michael is so sensitive to smells, sounds and disturbances in his "Force" right now, that it is entirely disruptive to his system to extend our life elsewhere.

Out-patient may only be two hours 3x a week - but Michael will be there wholeheartedly and with more energy after being in our own comforting and controllable home.

Everyone together now: click your heels. "There's NO place like home! There's NO place like home!"

Yes, Dorothy - we're going back to Kansas (only with wineries everywhere).

Thank God!
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Mr. B.'s Eating Out; Touring New Rehab

Above are real photos of Michael thoroughly enjoying food in places that are NOT Cottage Rehab!

One's my hotel room, with a hot fudge sundae (and 3 cherries) and the other is Stacky's in Summerland, with a real, NOT digitally inserted, French fry and our fav turkey Ortega sandwich. (Best Valentine's Day ever splitting that sandwich with him, like old times!) Mr. B. bragged he'd only eat ONE French fry; I bet he'd have to eat at least 4: I won the bet! Hey, we ordered a small fries to share and left 7/8 of it. Who DOES that? This is no time to limit oneself to one fry...

Transitions galore!

It's been difficult to post here because I'm with Michael in a whole new way now that he's in his right head and we've both been cleared for travel. Not complaining, mind you.

I'm just tired in a different way when I do get back to the room. I don't have much left and am desperate for sleep.

My sweetie, being the sweetheart he is, tried to impose an 8:30 curfew on me so I'd get back to the room earlier in the evening - but we both have trouble observing it. We start cuddling in his narrow Rehab bed and I get all peaceful and dozy. Before we know it, it's 9:30, then 10.

RESTRICTIONS REMOVED! No more shrieking "Tab" alarm clipped on him at night. No more being belted into the wheelchair. No more aspiration precautions. No more soft foods only. No more walking only with staff - Patricia qualified. No more stuck in Rehab!

Today we get a tour of Solutions (all Rehab/no hospital) in Goleta, where we'll be for 3-6 weeks. We transition Thursday morning. Everyone together now: YAHOO!

SWEET TIME OF US-NESS. Michael and I feel so much in love. We're keenly aware of the gift we have in each other. And Michael's being a sophisticated communicator about how we can get through this sometimes tricky part of healing and transition without our relationship taking a hit.

I respect him so much. I tell you there's nothing better than being with a trained Marriage and Family Therapist, with high communication skills, who's in touch with his "feminine" energy - but is 100% heterosexual!

Gotta jet. Promised my guy a bagel.

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PHOTO ADDED! Wed & Thurs: Walkin', Steppin' & Preppin' to Leave!

Michael With Physical Therapist Erin As We Practice Getting In and Out of the Highlander. It Was Easy-Peazy! Our Car's the Perfect Height - No Stepstool Needed. And Michael's Ready to Boogie!
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SHORT ENTRY DAY.

Cute Anecdote. When the time came for me to leave for my Oxnard/Ventura comfort mercies Wednesday, (chiropractor massage and dins with son & grandbaby), Michael cleverly expressed his conflicted feelings about it.

"I want you to go and have a good session with Dr. Knight -- don't leave -- and then have a wonderful, soothing massage with Cathy -- don't leave -- and then have a warm, loving dinner with Mike and Liam -- don't leave."

We laughed -- and I left.

While it was good to tend to myself this way, it made me realize just how numb I've made my body since mid-December when all this started. The body work just poked and prodded the nerves awake enough for me to go "OW!"

I was sore everywhere - and almost worse off for starting a process that couldn't be finished quickly. But it was time to start.

So I go back to the chiropractor and masseuse Friday and hope for more relief than pain.

WHY IT'S SHORT ENTRY DAY. The reason this is a short entry day covering three days is that last night Michael started asking questions about the time he doesn't remember. I began with good stories (the miracle of Chris Van Huff showing up the day we asked if the former Swine Flu/Pneumonia/Stroke ICU patient, fully recovered, could be called) - and it progressed to Michael hearing some of the bad moments.

He was in awe. And had even more increased empathy for my part of the experience, all a blank to him.

When I got back to the hotel room last night, I was emotionally drained. I hadn't relived those memories at all, especially since the present is still demanding, though a much happier kind of demanding.

Now it's morning and I've got to jet.

More next time!

P. S. We leave here Thursday of next week for Solutions Rehab (it's Rehab minus Hospital environment) and Michael practiced getting in our Highlander, which is the perfect height, no step stool needed. He also practiced stairs, which we have at home. His progress is AMAZING!!!! (And he knows it now on a deeper level after hearing how far he's come.)

Sweet Tuesday; Getting to the New Normal

This picture is from Saturday when my brother Russ briefly dropped in on his way down from our Paso Robles house to his own in La Crescenta, bringing us more clothes and a this-and-a-that. (He's going back Wednesday for more housesitting.)

He also brought Mr. B. a new watchcap that says PASO ROBLES and looks quite dashing on him, as you can see. DON'T I HAVE THE BEST BROTHER??
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Well, the tummy tube hole in Mr. B. has healed overnight, as predicted, and he was able to eat without leaking, as hoped. However, he did suffer some stinging and asked for the painkiller midday (Norco). That always affects his head/dizziness a bit, which affects his physical therapy effort - yet, he continued to walk 50 feet distances with Erin and me by his side for safety and do arm exercises with elastic bands.

He did so many leg exercises yesterday that the legs were a bit shaky today (Tuesday) as well. Understandable.

Calling Testosterone! Epiphany! We realized that before this, with aging and chemo taking its hormonal toll, Michael had not successfully built muscles at the gym until he'd gotten testosterone shots. We ran that concept by the fabulous Dr. Ross, and he's looking into getting Michael a patch for testosterone, so he can have more success at rebuilding his atrophied muscles.

Coumadin Too! Another epiphany! The fact that Mr. B. had been on Coumadin for blood thinning in the ICU, which was halted due to some test, got lost in Michael's voluminous medical records. Dr. Shapiro (here) had to call Dr. Shapiro (in Templeton) to affirm my affirmation that he'd been on it - and they started him on it him again, with a 5-day overlap with the other blood thinners until the Coumadin takes over. He'll only have to be on it for about six months, and Michael's relieved about it, because he expressed that he does fear another stroke.

The reason they prefer Coumadin to Locinapro & Lopressor is if they need to thicken his blood for clotting purposes, they can do so more quickly by using Vitamin K; with the other stuff, they have to wait 24 hours. (and Margaret, I did take the opportunity to ask Dr. Ross if he'd ever actually seen a vitamin, which you had once posed as a fascinating question. He stared at me blankly for a minute, then said, no, but there were special microscopes that could. Humph! Says he!)

Love & Marriage. Michael and I had a sweet afternoon, talking about our relationship and how this has brought us closer. He expressed unselfish concern for my health and well-being, urging me to take care of myself, leave earlier and sleep in a bit - although, he adorably added he would miss me terribly.

I'm actually taking myself to my old friend and chiropractor, Dr. Roger Knight, today in Oxnard, as my hips have gone out without me. Then I'm going to take my son, daughter-in-law & grandbaby out for Chinese food, all things I've longed for. But isn't he the best fella - worrying about me in all this?

Then Michael and I spoke of getting really, thoroughly & legally hitched when all this is over and we're back to our life. Not the walk-down-the-aisle kind of wedding, as that's not us. But the huge-party-with-a-ceremony-in-the-middle kind of wedding. We've actually got about four friends who can marry people, and may have to have them all take a shot, so no one's miffed!

More importantly, my darling said the most romantic and touching words to me about how much I mean to him and how this whole bizarre journey has solidified his belief that he wants to spend the rest of his life with me - and I say DITTO!! Mr. B. is the love of my life - and marriage is the 1950's happy ending in all the Cary Grant/Doris Day type movies I grew up on, so I'd like it, though I haven't pressed for it. Although, my best friend, Shelene is gleeful to the point of delirium, as she predicted it right from the beginning. To me, it's just a cherry on top of an already delightful banana split.

But, hey! Any excuse for a party!
DORIS AND CARY!

RED LETTER DAY! Stomach Tube Out!!

Hurrah! The last invasive medical solution-that-becomes-the-next-problem is GONE!!

Dr. Shapiro took out the tummy tube Monday morning while Michael squeezed my hand (a local anesthetic was used, but basically they just take it out quickly like ripping a band aid off a hairy arm).

A bandage with stupid, insufficient tape was applied - I pointed the stupid tape out, of course, but they had to see it leak and get all over the bed and Michael's clothes before they would bring out the industrial strength bandage and then put a cotton pad with the same stupid tape over that.

(See, just when I try not to be overly assertive, something like this happens and I kick myself for not wrestling them to the ground on what I know should be done differently!)

Anyway, it required yet another bandage change after lunch - and Michael was grossed out and afraid to eat dinner. They told him the wound would heal overnight and just to cut down on liquids.

"But I don't want dinner to seep out," Michael said to PT Erin and me.

"Wow!" I said. "You hardly ever hear that sentence!" And we all laughed.


ARM EXERCISES WITH BOSSY DORIS - IN THE PATIO - WITH BILL LOOKING ON.

AND YES, THAT IS MICHAEL'S LEFT ARM, AND DORIS IS ONLY PROVIDING SUPPORT. HE'S TOTALLY LIFTING A TWO-POUND WEIGHT...AND HE HAS A FRESH HOLE IN HIS STOMACH, TOO. THAT'S HOW MUCH STRONGER HE IS!

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SPECIAL GIFT FOR SPECIAL PEOPLE.

I took this picture of my necklace, which I bought at the Cottage Hospital Gift Shop soon after we got here. Its message has been symbolic to me of our journey, and I've worn it daily. (Boy, my Blackberry takes great photos, doesn't it? Looks just like a photo in an ad.)

Anyway, I gave mine to Karen before she went back to SD to thank her for being my special ICU nursing buddy as we battled Michael's constantly spiking fever and illness back in Templeton (shudder).

I'll be gifting a few more of these as thank yous to other special women who have been in the front lines with me on this strange and stressful turn of life.

If I could afford it, I'd get this necklace for the less visible, but equally important people - men and women - also on the front lines of prayer and healing energies sent Michael and me during all of this, but I'd have to buy hundreds, maybe thousands of them. So many people have been prayer warriors for us and we have gone so many group prayer lists! I feel strongly that everyone's loving efforts have been an essential part of Michael's recovery. Thank you ALL!

It's not over yet, of course, but with the tummy tube out now, I can really see us going home in a couple of weeks and starting to pick up our lives.

Keep tuning in, folks - I think it all gets better and better from here on out.

Hugs!

Weekend Update: This Just In...

KAREN CAME FROM SAN DIEGO AND "PUSHED" MICHAEL AROUND!

On the top, Michael's all bundled up, but on the bottom, he's celebrating the warmer weather by wearing gym shorts.
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Surprises Galore: Saturday...
Therapy sessions on Saturday here runs light and - surprise! - Mr. B. was not signed up for any therapy sessions Saturday. So someone got to sleep a lot (it wasn't Patricia). Yet, there was still time for surprises.

It was not a surprise that sister Karen came in on Amtrak from San Diego late Saturday, and brought with her a gift of several needed and requested wonderful soft, long sleeved T-shirts. Though she did surprise her bro with homemade brownies, which he tremendously enjoyed. Good job all around, Karen!

But it was a surprise that, before she came, Michael had an upset stomach in the morning (which was better than outright nausea) and achy shoulders all day (a new complication of left arm having previously hung heavy and right arm being over used for pulling forward in bed).

Patricia, whose card now reads "Medical Detective," continued her problem-solving for the morning tummy upset - and figured out that Michael's given way too many meds in the morning after breakfast, which, in this case, had way too much sugar (blueberry pancakes with syrup) to be substantial. (If Michael wasn't nauseous or dizzy, he says he would be able to work harder at his Rehab Recovery - and knowing him, I know it's true, which is one of the reasons why I try so hard to solve this.)

A quick conference with the adorable Dr. Ross, an extremely personable doc with the charm and expertise to play one on TV, resulted in at least one of the meds being moved to evening. A Maalox chaser helped Michael, as did a little pain med for the shoulders.

After Karen showed up, Mr. B. began to suffer from what he later dubbed SGS - Severe Grumpiness Syndrome - and actually had to apologize a couple of times for biting our heads off and chewing them soundly.

Another weekend challenge was to count Michael's calories for each meal. Dr. Shapiro (who would play the experienced, irascible older TV doc with a forced bedside manner) said he would remove Michael's stomach tube Monday morn if no canned food was needed all weekend. The goal was 500 calories per meal minimum - and Michael was with the program, eating extra bites of the highest calorie stuff (per printout) and drinking whole fat milk to top it off.

It was no surprise that we successfully caloried Michael up and totally expect that tummy tube to be ga-gone first thing tomorrow morning. (And the extra benefit will be that Michael can eat more now, I'm thinking.)

Sunday, Sunday...
It was a surprise that when I reminded Michael that his dad was coming to visit today, Michael asked me to call him and see if he could come another time, as Michael felt overwhelmed to have both Karen and Bill at the same time (even though he'd said yes earlier). Sometimes, how Michael feels surprises even himself. Thanks for understanding, Bill.

It was a good surprise today that Michael's stomach discomfort was cut by half, with one less pill and the pills taken closer to a breakfast. Dr. Alexander, Medical Detective here!

Yes, it was the Superbowl today and it was on the dining room big TV, but - surprise - Michael was barely interested because - no surprise - it was noisy, crowded and hard to follow. And the TVs in the room don't cut it.

But the really big surprise came later today when an aide asked to talk to me in the hallway while Michael was taking a shower. She introduced me to a blonde lady in a wheelchair with her foot extended and in bandages. Her name was Kim and she had recognized Michael - because they used to be college sweethearts!!!

Poor Kim, who lives in Santa Ynez with her teenage son, had slipped on a freshly polished floor, and broke her ankle in two places.

Later, Kim and Michael and Karen and I got together after dinner. What fun to hear their stories! They were each other's first sweethearts when they were only 18 - and had stayed friends for years. Kim and Karen remembered each other, too.

Okay, someone. What are the odds?

So, it was not a surprise that we had a good Sunday, enjoying Karen's visit, extra naps for Mr. B., extra food for Mr. B. - and ended with the surprise of a double wheelchair hug!

(FONT CRAZINESS DUE TO FAILED EXPERIMENTATION WITH A NEW BUTTON. SIGH! I GIVE UP!)