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Ten Ways To Getting the Most Out of Your Next Doctor’s Appointment

29 Nov

How many times do we leave the doctor’s office kicking ourselves latter for not finding out the information we needed?  Or become mad at ourselves for not saying something about the hour’s wait. We often forget that we are the ones buying a service and rather think that it’s only the physicians providing a service.

Here are ten tips to help you navigate the physician’s office and appointments:

1) Tell the physician at the beginning of the appointment what you’re there for. 
That  fixes anything that was lost in translation with the appointment desk or the nurse when you told her. It also gives the physician a roadmap for your appointment.

2)  Write yourself a list of what you need to know before leaving the exam room.
Even if your physician signals that the appointment is up, stop him/her and tell them what issues you still have to discuss. Doctors will rush you, but you have a right to get the most out of your appointment. It’s always a good idea to tell the scheduler why you’re coming in so that she will know how much time to allot to your appointment.

3) If you’re on a lot of medication, by all means take an easy to read list of what you’re on
 Be sure to note what the dosage is and how often you take it. This helps you and the doctor. The doctors don’t have those lists handy and have to search through your records.

4)  If you want certain blood tests ordered, such as cholesterol or thyroid – write it down and tell the doctor up front.
That’s better than trying to fit it in at the end of the appointment when the doc has your chart in hand and another hand on the doorknob.

5) Also remember that you have every right to talk about your medical problems in private.
Many gynecologists’ offices take women into an initial common area and asks them all sorts of personal questions with others around. I simply say that I would rather wait and answer those questions in private. If they tell you this is their process, to heck with it. Just don’t answer the questions. In recent years I have never had a problem doing this. Twenty five years ago, however, the nurse in my gynecologist’s office proceeded to ask me very personal questions and balked when I balked at giving answers with the male drug rep standing there staring at me. She insisted he was a professional and I guess she thought that made it alright. I stood my ground. Even the physician told me that in a gynecologists office that questions such as “have you ever been pregnant” and “when was your last period” are par for the course around others. This was before HIPAA obviously. But I still stood my ground that it was none of the drug rep’s business even though I had never been pregnant. But if I had, then  I didn’t want to explain myself with him ease dropping.

6)  If you don’t understand or accept an answer given by a nurse, you have every right to speak to the doctor.
I respect nurses, but find that a lot of times I get incomplete answers from them. On one occasion, I asked the nurse by telephone  why my female hormones were prescribed almost opposite of they way the PDR said they were supposed to be taken. Her response was, “Well that’s how we prescribe them.” So I rephrased my question to, “Well obviously that’s how you prescribe them because that’s why I’m asking. I want to know why it is you prescribe them differently.” Her answer again was “Because we prescribe them for everyone like that.” Since I was seeing the doctor in about a week, I told her that I would ask him. And he actually brought it up to me and told me that no patient had ever asked him that question before but it was a legitimate question. The answer didn’t placate me much. It was,”Because the drug reps recommend they be taken like that and the PDR hasn’t caught up because the company doesn’t want to pay for the clinical trials.” Jimminy.

7) If you are accompanying an elderly relative to the doctor’s and need to relay information or present issues to the physician without the relative knowing, then the best idea is to fax them into the office before the visit. 
This way the office can put them on the top of the notes section for the physician to see. Be sure to write boldy that you don’t want the relative to know you brought up the issues. Or if the case allows, call in . I recently had this happen and explained to the scheduler that when she called to schedule my aunt’s follow-up appointment that she should expect to be chewed out. After explaining the situation, the scheduler understood and went along with the plan I recommended of taking the fall for the confusion, especially given that my aunt was elderly and just had a stroke. Without me calling ahead, there probably would have been a showdown.

8)  If you find yourself waiting more than 30 minutes in a doctor’s office, find out why the doctor is running late.
It will tell you a lot about the doctor’s priorities. I once made an appointment for 9:00 and the doc was already running 45 minutes late by the time he saw me. I asked why and found out that his first appointment was 30 minutes late. I don’t know if it did any good, but I was sure to relay that someone else’s tardiness did not mean I should be held waiting.  Be forewarned though that physicians do not like when you question them. Another physician kept me waiting for an hour and a half and didn’t see me until 6:30 p.m. This was an internist I had been seeing for ten years. I presented my concern calmly and in a low voice. It’s an understatement to say it didn’t sit well with him. I took that as a sign to find another doctor.

9)  If you find yourself waiting more than 30 minutes and want to leave, politely tell the desk that you are leaving and can’t wait on the doctor’s schedule because of your own schedule.
DO NOT pay for this visit. It’s not a patient no-show, it’s a doctor no-show. Many doctors over schedule because of no-shows and that they must pack their schedules in order to cover overhead. Give them a bit of leeway as caring for patients thoroughly is not an exact science of time schedules.  Many a patient adds another 30 minutes onto an appointment when the physicians asks at the end “is there anything else?”  The best physicians, however, are those whose offices run efficiently because it tells us that they respect our time as much as theirs.

10)  Just  because a physician suggests you take a certain medication doesn’t mean you have to. |
You are the final decision maker. Always ask why they are recommending a certain medication, and then  ask what would happen if you chose not to take it. I had a physician try to prescribe a statin for me and was shocked when I refused. My cholesterol was 270 so it was obviously way too high. But I had reduced my cholesterol before by eighty points by diet and exercise alone and I was determined to do it again. Besides I told her, “statins make you gain weight.” Her response was that everything makes you gain weight. I was quite adamant when I replied that I’d rather be dead than any fatter than I am.  She dropped the issue. After all, she can only suggest and recommend. As the patient, it is up to me to decide what advice I want to follow.

After many years of seeing only male physicians, I purposely chose a female internist recently as my primary physician. Her office is on the other side of town from where I live, but it is worth it for me to travel 45 minutes to see her.  I always sit in a chair when first talking to the doctor.  So the good doctor simply pulled her stool up beside me and just talked to me about my health. It was comforting to have a woman near my age to discuss female health with, as well as weight. She understood. We discussed; she didn’t just shoot questions at me. She also answered every single question I had thoroughly and without rush. Now that’s a good doctor in my books.

The best patient is an informed patient and an empowered patient. And the  best doctor is one who partners with you in your own healthcare.  Getting patients to good health is the goal of all physicians.

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Our Government Funds Programs to Make Us Fatter

7 Nov

For several years the government ran an advertising campaign touting the consumption of dairy products as a way to lose weight. Problem is, it wasn’t true.

After the campaign began, several million dollars was spent to substantiate the government’s claim – after it had already claimed the weight loss effect.  None of the researchers, including one funded by the government, could find anything to prove their claims. The government even got angry at the researcher they hired and threatened to “audit” her work. And the campaign continued.

An ad in People magazine claimed: “Clinical studies show that people on a reduced-calorie diet who consume three servings of milk, cheese or yogurt each day can lose significantly more weight and more body fat than those who just cut calories.”

An excellent article in the New York Times reports how the government continues to push the sale of cheese with big marketing dollars while at the same time scolding the public for obesity.

The Dairy Management is the creation and an arm of the U.S. Department of Agriculture, our obesity police these days. The NYT article says that while the Dept. of Agriculture is putting out literature recommending we ask for whole wheat pizza crust and half the cheese, Dairy Management is helping Dominoes sell more pizza by showing the company how to add more cheese to its pizzas.

With consumption of cheese has nearly tripled in the U.S. since 1970, American waistlines have followed suit.

I remained dumbfounded at the continual conflict of interest actions when it comes to recommendations for Americans to eat more healthily.

We Must Start With the School Cafeterias

School cafeteria food is my pet peeve. My daughter complains that the only salads offered at her school are tiny dreadful inedible creations.  She goes for the pizza line daily because she says that’s the only one she can get through and still have time left to eat. She also mentioned that this past summer, she dropped ten pounds rather quickly by simply not eating school cafeteria offerings. When she attended a private school in middle school, she was thrilled to partake of its fabulous salad bar. But not in her public school.

Why is it that schools cling to their soft drink machines and the high fat and refined carbohydrate foods that offer our kids little nutrition?  The answer is he same as why the government promotes the very eating habits it warns against –because that’s where the money is. Follow the money.

The our schools should do the same  thing many parents do at home and that’s only make nutritious food available. Why is this concept so darn hard?

Queen of My Own Grocery Cart

27 Oct

I am amazed that I have friends who still don’t understand a low-glycemic diet.  They aren’t even sure what it means. Large and small, they look at me quizzically when I tell them that’s the foundation of my diet. 

All it took was a house guest for four days to throw me off my game, diet and fitness-wise.  I also succumbed to too much happy hour socializing rather than my beach walking hour at the end of the day. When alone, I am more focused in my routine.

Actually my guest was a friend and we were going to see if it worked to live together part-time. She’s a big-time photographer and travels a lot, so we thought it might be a perfect arrangement that helped both of us.  We’re a lot alike in that we like to drink wine and brainstorm creative opportunities at the same time.  (Okay, I know wine is not low-glycemic, but it’s my one vice and treat.)

I’ve been trying to stay on a plant-based, low-glycemic diet. This is only possible when I have control of what food comes into the house and what doesn’t.  I totally forgot that a new person would have her own eating habits. Heck, I haven’t had a roommate in more than 25 years other than a husband who was in his own way a diet buster, Mr. Red Meat and Starch. And with my kids, I’m still Queen of the grocery cart.

So the first night, she cooked. She said her pasta was low-glycemic. (After I explained what low-glycemic was. ) Didn’t want to put veggies in it. I finally waived dinner to her. When she set the table, I thought that maybe she had brought her own bowls. I didn’t have pasta bowls. Then I realized, that she had served us in my larger veggie serving bowls! A mountain of pasta and red sauce with cheese on top.  And I ate all of it. That’s my issue. If it’s in front of me, I eat it. Don’t ask me to push it away. I don’t do that. What I do is control what goes on my plate.  

A few weeks ago, I spent several days  with another friend at her house who doesn’t understand why I can’t eat crackers, pasta, a “few” potato chips. She’s nearing 60 and there’s hardly an ounce of fat on her.  I tried to explain to her that it’s the ratio of protein  to carbohydrates, but refined carbs were not allowed.  “Oh, you can’t have cream cheese and crackers? But there’s protein in the cheese.”  Sigh.  And so it goes.

Having a roommate/house-guest for just four days was a rude awakening in trying to coordinate with someone else’s eating habits. When I got divorced from my incredily picky-eater husband, I swore I would never be controlled by someone else’s diet again.  So marrying a man who isn’t very cognizant of what he eats is totally out of the question for me.  Honestly, a meat and potatoes kind of man would find me a gastrinomical bore, so that’s not an issue.

We are all responsible for what goes into out bodies and when we give that up to convenience and others’ desires, we are doing ourselves a huge disservice. So I’m happily back in my little routine. I walked two miles on the beach tonight with my doggie,  followed by an hour in the gym while watching “Glee” and then followed by a glass of wine and a big spinach salad filled with chick peas, cucumbers, walnuts and peppers.

My friend and I decided it wouldn’t work to live together, mostly because of our dogs didn’t do well together. But to me, I’m rather thankful I have control of the food in my house again. I’m so glad I’m in a position to do this now because I know that it’s the life women with families can only dream about.

When Doctors and Hospitals Apologize Good Things Happen

23 Oct

Physician apologizing

She said when the doctors and the hospital apologized with sincerity, a peace came over her because she knew she didn’t need to sue the hospital. Because she didn’t really want to. She just wanted to make sure no other families had to endure what hers did.

It was the middle of the night about six months ago when my friend and her mother rushed her father to the emergency room of a Jacksonville hospital because her father, who had a very advanced stage of cancer, was relentlessly screaming in pain. The hospital refused to give him any more pain medicine than what he was given at home, and they refused to admit him. Something about Medicare policy.

My friend was frantic. What was she supposed to do?  The hospital said to take him home. “But he’s screaming in agony!” my friend pleaded. Hospice could not take him until the next day and the hospital didn’t see fit to intercede on the patient’s behalf.

My friend said she couldn’t even get him to the car in his condition. The hospital staff said they’d do it.

So off into the night my friend went with her father screaming in pain. She said he screamed all night long. And then he died three days later.

The family was traumatized they said by the cold and heartless treatment of a facility that has a reputation for outstanding care. My friend said listening to her father scream in agony and pain all night was the worst experience of her life.

After her father’s family physician made inquiries, the family received a call from the hospital requesting a meeting. My friend was sure it was going to be merely a CYA meeting and to gauge where the hospital stood legally with them. But it wasn’t.

The ER physician and hospitalist who made the call not to admit the father looked my friend and her mother in eye and offered sincere apologies for what happened. There was a bit of CYA. They told my friend that by Medicare rules, the physician must actually see and hear the patient scream and the physicians were never in the room when he did. I’m not sure I would have accepted that weak explanation, but I wasn’t there. The apologies that transpired were enough for my friend and her mother to feel that the hospital was addressing its procedures. And that’s what they really wanted.

Hospitals and physicians are realizing more and more that simple apologies go a very long way when a patient feels they have been wronged. Wives have been telling husbands this for years.

Someone is finally listening.

25 Extra Pounds Isn’t Just Fat, It’s HEAVY

2 Oct

Today I picked up a 25 lb. weight in the gym to see how heavy it was.  I lost 25 lbs. this year and wanted to see what it really felt like. I was astounded.  It was really heavy!  I have more than 50 lbs. to go in my weight loss journey, so I gave the 50 lb. weight a try. I could barely pick up up off the bench. 

This was a real wake up call as to how much the extra weight I’m carrying around actually feels like and what it’s doing to my joints. 

 I have to confess, my 25 lb. weight loss has not been  all that hard once I was able to start exercising after a year of a broken ankle followed by knee surgery.  No matter how little I eat, the weight  just doesn’t come off unless I exercise.

As I keep on keeping on,  I plan to lift that 50 lb. weight every time I go int to the gym just to remind myself that my extra weight truly is a ball and chain. On my body and my life.

The Last Bastion of Acceptable Mockery

21 Sep

Take a look at this photo, and what is your response? 

I bet at least half of you laughed and a good number of you groaned and thought that the guy has no business on a plane.

This photo was shown recently in an informational meeting I attended about gastric banding.  I was the smallest person in the room except for the doctor, Michael Baptista, MD and his staff. When he showed this photo, not one person laughed.  We saw it from a different perspective; we knew that there was something very, very urgent that this man needed to tend to for him to fly instead of drive and subject himself to that much discomfort and humiliation.  He sure didn’t get on the plane thinking, “Oh boy, I get to hang half my ass into the aisle and get dirty looks from my seat mate, and get humiliated by the flight attendants. This will be a blast.”

Movie director Kevin Smith was kicked off a Southwest Airlines flight recently after he had already been seated because of “safety concerns.” The guy is overweight, but not outrageously so.  Seems he usually bought two tickets for comfort, and when he flew standby that time and got only one seat, a red flag came up. Although he did not meet the Southwest guidelines for being too fat to fly, he had no recourse but to leave the airplane. As he got up to leave in humiliation, he eyed a guy a few rows back who was much larger than himself, and he said the guy’s eyes begged him not to give him away.

I will never fly Southwest Airlines again. Ever. I had already had my own embarrassing moment on Southwest when I read what happened to Smith. I was getting myself all buckled in and for some reason couldn’t get the seatbelt buckle to engage. So I asked the flight attendant for help and she announced very loudly that I obviously needed a seat extender.  As I looked at her with daggers, I said that, no, I simply couldn’t get the catch to engage. She  laughed and said off-handedly, “I just call ’em like I see them.”  The last thing I wanted to do was draw more attention to myself, so I just told her calmly to just go away. She seemed thrown that I was upset. Through my tears, I realized I had the seatbelt buckle backward, and when I turned it around, it indeed closed. Callous flight attendant returns and offers me a drink for hurting my feels, although she “didn’t mean to.” Again, I said through my gritted teeth, “Just. Go. Away.”  I waited until every single passenger was off the plane — didn’t want to get arrested — and then I let her have it.  She was still baffled what she did wrong.

A few days later I wrote a calm and thoughtful letter to Southwest and in due time received a thoughtful letter in return. But  Southwest employees keep giving this same kind of treatment to other passengers and it’s unacceptable.

So back to the photo. Did you laugh or feel sorry for the guy?  It probably made you a little mad that he would inconvenience everyone with his presence.  Am I right?

My message here isn’t about how hard it is to lose weight and therefore let’s all feel sorry for the guy. But rather, it’s that every person has some sort of cross to bear and some of ours are just more apparent than others. And, unfortunately, mocking obesity seems to be one of the last bastions of rudeness that isn’t considered politically incorrect.

Sure, there are many who feel that all fat people brought it on themselves, and it’s their total lack of willpower and self-control that got them where they are. No matter what they do now, however, it won’t come off.  So that means in a civilized society it’s perfectly acceptable to mock them, bring ridicule upon them and make them feel less than?  Evidently so.  People laugh every night at fat jokes told by comedians on late night TV. But why? Why is it funny?

Only you can answer that question for yourself, why you laughed at the photo above. Then ask yourself if you’re all right with the answer.

Texting Revolution for the Deaf

20 Sep

Texting is revolutionizing the way in which the deaf communicate.  I had worked in a school for the deaf for several years in the not too distant past and was surprised that it hadn’t occurred to me about texting when I read a story about it today.  The children I worked with were mostly under eight years old, so their written communications was still developing anyway.

Where the deaf were once limited to primarily communicating only with those who knew sign language, in the last 20 years cochlear implants have changed the landscape of communication for the deaf.  There was once a culture clash between the deaf who reasoned that they weren’t broken, and therefore didn’t need to be fixed, with those who wanted to be part of the hearing world and chose cochlear implants. That too is changing as it has been proven that children who are implanted as babies, when trained properly, can often be educated in a regular classroom by first grade.

The school I worked for was called Clarke School for the Deaf and is one of the most well-respected in the country. After nearly 150 years, they recently changed the name to Clarke Schools for Hearing and Speech which is more befitting. The main campus is in Northampton, Massachusetts, right next door to Smith College, with satellites up and down the east coast. I worked at the Jacksonville campus.

 Teaching the deaf to listen and hear was an awesome process to watch. No sign language was allowed at the school. Their job was to teach the children how to listen with their cochlear implants, or hearing aids, and then speak coherently and correctly. One day a group of college speech therapists was in observing, and it was obvious they were required to use sign language when addressing each other even though they weren’t deaf.  The kids at the school looked as them as if they were aliens and kept asking, “What are they doing with their hands?”

I wasn’t a teacher, but  rather a fundraiser hired to help raise funds for a new school. The first day a teacher of the older kids who were theoretically about first and second graders, invited me into her classroom across the hall to help out with a learning exercise for the children.  I was to stand in front of the class and they were supposed to figure who I was by asking questions.  At one point I told them I was hired to help them build a new school. They all stared silently. ( I would later learn that deaf children understand things literally.) So the teacher asked them how they thought I was going to do that – by digging the hole? And so it went. Oddly, all the teachers at the school were called by their first names, so when I left the classroom I pointed to my office and told them to be sure to say hi to me when they walked by, and that my name was Cam Brown.

From that day forward, I was referred to by the kids as CamBrown, all one word.  “Hi CamBrown, hi CamBrown” and on and on as they filed out to recess. It baffled the parents because they referred to me the same way at home.  I found it endearing.

Heather Whitestone McCallum, Miss America 1995

At our annual gala, Miss America 1995 Heather Whitestone McCallum was the guest of honor. If you remember, Heather is deaf, but could talk very clearly and even performed a ballet that won her the crown. Her Mother Warrior taught her to talk when she was growing up and was dumbfounded and distraught when Heather demanded in 8th grade to go to a school like Clarke. There she flourished in speech and academics, as well as socially. An expert lip reader, she didn’t use sign language and didn’t feel she needed a cochlear implant. Until she had a child. She said her son hurt himself in the backyard one day and she didn’t know it because she couldn’t hear him cry. That’s when the Mother Warrior in her kicked in and she decided she wanted to be part of the hearing world of her new family. She addressed primarily the parents with deaf children that night at the gala and filled their hearts with hope and determination.  And the knowledge that it takes a Mother Warrior to raise a deaf child.

Learning to hear with a cochlear implant is a lot of work. Those who have had prior hearing, such as Rush Limbaugh, say the sound is similar to the voice of Mickey Mouse. He had no trouble because he knew how to interpret the different sounds. But when you’ve never heard the knock of a door, how do you know what it is? Heather Whitestone tells a story of being in the family van and becoming unnerved by an incessant sound, until her husband finally realized it was the sound of her sons in the back seat sniffling.

So texting is an awesome tool for the deaf. They can do things just like others – call their children in to supper with a text, tell their teenager to turn off the light and go to bed, find out where their husband is in the mall, and communicate with the hearing world without skipping a beat. And in a pinch, if the lady at the hamburger counter can’t understand them, it’s a portable communicator. Type it in and hold it up for her to read.

Last year I interviewed Bruce Maddern, MD, a physician who was instrumental in getting the cochlear implant program started in Jacksonville about 20 years ago. He said that because cochlear implants were still a deaf culture hot button, he gathered all the community players together at his house for a dinner party. And it was at that dinner party that he realized, among the hearing and the deaf, he was the only person at the table who couldn’t communicate with everyone because he did not know sign language.  He said that rocked his world in understanding how the deaf feel.

Who knew that the past-time that drives many parents nuts would be another magnificent tool in the toolbox for the deaf?

Princess Fat Butt

18 Sep

A friend referred me to another blog today – PrincessKnowItAll.com.  All I can say is – she stole my title! I aspire to be all things her blog is. And that title. Just ask my family, they’ll say she stole it from me too. I just hadn’t thought of it yet.   I’m still trying to come up with something appropriate to replace “Beach Journal,” as lovely as that is.

As a blogging neophyte, I’m still developing exactly what direction my blog will take. It’s easy enough to share one’s thoughts and observations as they bubble up, however, most people look for focus when deciding to whom to give their valuable online time.   My forte is the observation of life’s ironies. As PrincessKnowItAll says, life takes it toll and we find out that we indeed don’t know it all after all.

I was talking with my sister today who has in the last year had shed most of the unwanted weight she held for many, many years. She did it all by herself in a way that none of us would ever believed.  She ate right and exercised.  Her refrigerator and pantry look like a Whole Foods aisle.

A number of years ago when her daughter was trying to lose weight, and also doing it the right way, my sister was beside herself that her daughter might be anorexic. “She doesn’t even put salad dressing on her salad! And she won’t even touch a french fry!” she lamented. Well, yeah. She was not then and hasn’t ever been anorexic. She was just doing what her mother didn’t know how to help her do.

So I was talking to my sister today about possibly getting a gastric band – you know those bands they put on your stomach that simply limit how much can go in.  Her first remark was, “Well don’t tell anyone if you do it because that’s all anyone will talk about, that you got a band.”  Before, I would have agreed with her wholeheartedly, but today – who cares. It’s not like no one knows I’m fat. They probably know it more than I do. I feel one way and then look at photos and think, “Holy moly, who is that woman?”  It’s like I felt when I finally succumbed this year to a babydoll bathing suit, with the empire waisted skirt. I spent all those years with sarongs and swim shorts  trying to hide life’s insults. I went with my babydoll suit this year and I feel free for the first time in years. This is me and I’m representing.

My sister echoed the feeling many people still have – that losing weight with any “assistance” is paramount to admitting defeat.   Well let me make this loud, clear and simply – I have been defeated.  After 45 years of dieting, I am willing to admit defeat.

I was always a big girl and  looked older than my sister who is 18 months older. It was when I was 8 years old and my mother died that I first acquired a real weight problem. It wasn’t eating from depression; it was from having no one watching what I was eating. We had a morning maid and an afternoon maid.  While they went about their business, I was collecting Coke bottles with friends to cash in during multiple trips to the neighorhood 7-Eleven for all sorts of pure sugar sweets. I was addicted, to be sure. And it showed.

I had a decent figure as the years went on, but was alway just a bit bigger than all my willowy friends. When I went into the Marine Corps in 1974, I was

Circa 1975 and at my maximum weight allowed by the USMC

 

 5’8″ and 150 lbs.  And I was over my maximum weight allowed of 144.  The drill instructor threatened us with being held back if we didn’t drop the weight. We were put on the “diet line” in the mess hall and had no choices over the food we ate. 

What was interesting, however, is that the drill instructors would let me off the diet line when I hit my maximum weight, but they made all the other women get ten pounds below their maximums.  As soon as I went back on the regular line — boom, I’d gain a couple of pounds. All sixty of my fellow women marines were eating the same quantities of food and doing the same exercise and drills every day. And while little tiny girls lost weight, I would gain weight.

This was one of those life defeating moments when I realized that life was certainly not fair.

About eight years ago, I lost 80 lbs all on my own, the very same way my sister did. I’m not one to follow plans and measurements. I’m more of a concept girl, and then just get on with life and pay attention. I read Dr. Bob Arnot’s Revolutionary Weight Control Program (which I highly recommend) and applied all the principles in it to my food choices. And I walked on the beach at least five times a week for an hour. Within nine months it came off. And I kept it off for more than a year. My cholesterol went from 270 to 195 without drugs.

But when my children both became very ill, and my life became chaotic times ten, it all went out the window. It started with a medication a physician gave me that put on 30-40 pounds, and then it was Katie bar the door.

My cholesterol is back up to 270. My physician recommended statins to me, and I told her definitely not because they put weight on you. I said that I would rather be dead than be any fatter than I am now. And that’s the truth.

Today I met a bariatric physician while doing a cover photo shoot for MD News MagazineMichael Baptista, MD,  has the sultry voice of Antonio Banderas mixed with all the adorable charm of Hugh Jackman.  What he told me was: “You don’t need me to lose weight; you need me to help you keep the weight off.”  Bingo.  That’s what every woman knows who has ever felt victorious over her weight battle only to see it creep back on. Keeping it off is often harder than losing it. 

What we also know is that once we’ve been  defeated by weight for a period of time, we’ve got the fat cells that always want us to be that weight. We’ve also got the leptin levels that scream at our bodies like drill instructors, “You’re hungry maggot. Dammit do something about it. Eat. EAT NOW!”

All the corn syrup is gone from my house, I don’t often eat meat, except fish, few dairy products, yada, yada, yada. I know how to do it because I’ve done it. And I have managed to lose 25 lbs after finally recovering from a broken ankle followed by knee surgery. At least I’m walking now. I can’t, however, exercise like I used to. The pain in my legs and hips makes it difficult sometimes to simply walk the dog. I try to get in the pool when I can and ride the recumbant bike in the gym.

So this Princess Fat Butt – hey there’s a name — continues on so that she doesn’t give up, as they say, before the miracle happens.

Princess Fat Butt has a plan.

DON’T HANG UP ON HARRISON FORD

11 Sep

“Make sure the guy that plays you in the movie is 6’5″,” John Crowley joked to the crowd this morning, referring to Brendan Fraser in the recently released major motion picture  Extraordinary Measures. “And don’t hang up the phone when a guy calls and says he’s Harrison Ford, read about your story in the Wall Street Journal and thinks it would make a good movie.” (Ford forgave him.)

John Crowley spoke to the crowd at Brooks Rehabilitation’s “Celebrate Independence” about the extraordinary measures he took to keep his two children alive when they were diagnosed with Pompe Disease and given less than two years to live.  When daughter Megan was 15 months old and son Patrick was just seven days old, the doctors told them that their children’s inherited disease was so rare that there was no cure. And no one was looking for one. Pompe Disease means the body can’t break down sugar, glycogen to be specific. It eventually affects the heart and muscles.

Harrison Ford plays Dr. Robert Stonehill, the scientist who Crowley went to for help finding a cure in time to save his children. (Crowley told me this morning that the Ford character was actually a mixture of several scientists he worked with.) With time running short, Crowley quit his job as a financial consultant and all the security that goes with it, and began drumming up investors to help him. Other than having a Harvard MBA and business know-how,  he really didn’t know what he was doing. He simply had a mission to keep his children alive. $200 million later and  a biotech company bought and sold, he didn’t find a cure for his children, but he did find how to keep them alive.  He then had the hurdle of getting them actually included in the clinical trials for the medicine, and that mission was equally daunting.  He persistence, and his persistence alone, made it possible. “I think I did my job,” he says. ” As a dad, I did what I had to do. I don’t think that makes you a hero.” 

His message to the room full of people who had struggled to overcome their own physical limitations, and their families who supported them, was that it cannot be done alone.  Take help where you can get it. Sometimes it’s unexpected.

He told of trying to give his family a normal life. As normal as one can be when you pack up the family, the nurses, the grandparents, medical gear and go to New York City for the Macy’s Thanksgiving Day Parade.  What he didn’t know was that the crowds on the sidewalks are about ten deep everywhere to watch. And his daughter’s wheelchair was a 300 lb. monster. Trying to appear to the family that he had everything under control, he approached a police officer to see if they could move the barracade so they could have a better view. An officer who initially growled a threat to him about moving the baracade even an inch, then saw the family in tow with two kids in wheelchairs and ventilator gear, and he soon forged a path to the parade like Moses parting the Red Sea.

He also told of how when his daughter was of the age to attend kindergarten that her mother insisted she attend the neighborhood school. Megan’s mind was sharp. At kindergarten graduation, the pricipal told him that at the beginning of school he got many emails and phone calls from parents not wanting their child in Megan’s class because it might be to traumatic for them. After a year of friends, birthday parties and school plays, the principal said he got just as many emails and calls from parents asking for their child to be in Megan’s class next year.

While listening to Crowley speak, I thought about my recent posts regarding Mother Warriors  and all they do to keep their sick children going.  I found myself writing a Warrior Father type of story in my head. And then Crowley mentioned his wife Aileen, and how she took care of the children alone while he flew all over the country raising money and meeting with scientists.  But it didn’t stop there.

He added that none of it could have happened without the actions of a woman named Abbey Meyers , a self-proclaimed “housewife from Conneticut,” just like Polly Murray who spearheaded the discovery of Lyme Disease. Meyers is credited with being the primary force behind the getting  the Orphan Drug Act of 1983 written.  This is an act that President Reagan signed to give generous incentives to pharmaceutical companies to bring drugs to the market for these rare and little known diseases. It gives companies a seven year monopoly on the drugs they bring to market, like a patent does but without the lengthy process to go through. After the seven years is up, there is usually no competition from other drug makers because the biotechnical process of making these drugs is to hard to replicate for FDA approval. Meyers’ Mother Warrior persistence helped enable an entire biotech industry to find cures.

John Crowley has recently published Chasing Miracles: The Crowley Family Story of Strength, Hope and Joy. It’s not as much about the steps he took to save his children, but rather the lessons he learned along the way. The lessons all good Warriors learn through the eyes of their children.

Note – John Crowley’s book is available in the gift shop at Brooks Rehabilitation  in Jacksonville at the corner of University and Beach Boulevards.