What if .... solving the anorexia puzzle .... Charlotteshelix.net

Eating disorders have occupied my thoughts and actions for more than 40 years if one combines the years I was and then ten years later my family member began her own journey and continues to be snared by one.  Imagine how wonderful it'd be if one could take steps to help others avoid these disorders or even identify what could be done to change a thought process.  Imagine ....

Studies are beginning to open doors.......  People with imagination and character are changing things.

So far, I've taken three routes to participate in DNA studies.  The first was the Genographic Project offered by the partnership of National Geographic and IBM.  The goal was to collect over 100,000 DNA samples with the ultimate goal of learning more about who we are, where we came from, and how we relate as members of one (yes, one!) extended family.  You can learn more about this project here.

The project, incidentally, is on to a new phase called Geno.2 and more than 600,000 people have submitted their DNA sample.  Six hundred thousand people have participated!!

A few weeks ago, I picked up a paperback copy of Francis Collins' The Language of Life and read it in less than a week.  The story of the development of the analysis of DNA is quite fascinating and Collins writes so well for the layperson!  The book also points the reader in the direction of what is called personalized medicine.  As a result, I and two other family members -- possibly more because they're thinking about it -- decided to participate in 23andme's genetic study.  You can learn more about 23andme here.  In our own way, we hope to contribute to the knowledge being collected.  That knowledge will make a difference!

For an essay by Steve Kotler that appeared in Forbes Magazine on December 13, 2012, about the pros and cons of participating in 23andme, click here.

Then I watched this wonderful NBC 23andme special featuring Dr. Nancy Snyderman.  By the way, as Dr. Snyderman reports, you can also submit a vial of blood (rather than a vial of saliva as for 23and me) and about $4,000 and learn a lot more about yourself working with the company Illumina.  Hopefully this cost will come down for everyone and enhance the medical profession's ability to develop specialized treatment programs and target specific illnesses!

Meanwhile a new study with Dr. Cynthia Bulik at the University of North Carolina as the lead investigator titled the Anorexia Nervosa Genetics Initiative or ANGI was launched to identify genes that contribute to the development of anorexia nervosa.  "Contribute to" is an important concept when thinking about eating disorders.  I decided to apply to participate and was accepted.  They now have my vial of blood and my data will be entered into what they hope will become a global collection of samples that ultimately will help to identify contributing genes.

It was easy.  All I had to do was to ask my doctor to write a prescription to have my blood drawn at a local lab.  The lab handled the kit that was mailed to me, collected my sample, and then I wrapped it all up and took it to the main Federal Express shipping point.  (Apparently in Arizona satellite collection stations are not permitted by law to accept human specimen shipments.)  I've received notice that my sample arrived safely and is being processed.

This last point leads me to the main reason - person, in this case, and her name is Charlotte Bevan -  I am writing about all of this.  A cast of rather amazing characters including Laura Collins who not only founded the organization  F.E.A.S.T. but also shook up and brought along others to shake up the established way of looking at and then treating those with eating disorders, particularly anorexia, are behind what I remember listening to Arlo Guthrie exclaim - it's a movement!!!!

Carrie Arnold (the author of the above-mentioned ANGI piece that you can click on for more information) who has written books and maintains an informative blog, has crafted a piece titled, Charlotte's Helix, Charlotte's Legacy that you can find here.  Carrie's offering summarizes what hopefully is becoming viral now - the AN25K Challenge.

In honor of Charlotte Bevan (click here for more about her and the project) and her untiring work since 2009, the goal of all the people now involved is to bring funding to the U.K. with the ultimate goal of sequencing 25,000 genomes of 25,000 AN sufferers to help figure out what causes the illness and how we can better fight it.

I've sent in my check. Carrie  provides a link to where you can do that.  You can donate electronically, too.  Carrie also provides links to more information so  if you are unable to donate funds but would like to help, you can pass along the links.

Imagine.......

Called the Anorexia Nervosa Genetics Initiative (ANGI), this global effort aims to identify genes that contribute to eating disorders. The study aims to transform knowledge about the causes of anorexia nervosa and work toward a cure.
Professor Cynthia Bulik, at the University of North Carolina (UNC), is lead investigator. Australian investigators include Professor Nick Martin from the Queensland Institute of Medical Research (QIMR) at Royal Brisbane Hospital and Professor Tracey Wade, Flinders University (South Australia).
What is ANGI?
This global research aims to identify which genes are involved in the development of anorexia nervosa. ANGI wants to hear from people with current or past anorexia nervosa as well as people with no history of an eating disorder to provide clinical information and blood samples.
- See more at: http://www.nationaleatingdisorders.org/roll-your-sleeve-science-i-can-hardly-wait#sthash.iqO1vKBf.dpuf

Another Approach to Getting Beyond Bulimia - My Own

Having attended many family weeks, heard many theories about recovery from bulimia, read several books, and having seen how some people who desperately want to stop binging and purging struggle with the concepts of things like "fear foods" lists, I decided to share what worked for me.  The principle here is Less is More.  A key component is that after 15 years of being controlled by my disease, I'd had enough or to use language that I've read in several places, I was sick and tired of being sick and tired.

I want to interject here that I also recommend the reader to go to this link which is a review of the book by Kathryn Hansen titled Brain Over Binge.  She discusses the science of habits (among other things) and offers her own solution to overcoming bulimia.

First, having experienced the pull of binging and purging for about 17 years, in retrospect I now understand that I struggled with an addiction that was a coping mechanism connected with my illness, especially given the amount of reading and learning I've done regarding addiction.   I won't pretend to make any grand sweeping statements about my brain or what was going on or had happened in my life.  I certainly wasn't afraid of gaining weight and I knew darned well I looked awful when my weight was too low.   What I remember is that I took a form of comfort from the activity. 

Fast forward to my early thirties and I really became tired of the whole thing and I wanted to stop.  The wanting to stop got powerful enough to help me want to change.  I wish there were a "chip" or some solution that one could give to those with this disease to help them more rapidly reach that state of wanting to change.

Here's what worked for me:

I figured out somehow that the binge foods on my list had to go.  I knew that eating one of more of these was the perfect pathway for me to pathologically get into a binge.  Some time ago,  I was  watching a Sex and the City episode during which Miranda baked a cake and proceeded to eat almost the entire thing before dumping it into the garbage and pouring dishwashing soap all over it to prevent a retrieval.  That's a healthy reaction.  Many people with bulimia simply cannot stop; cannot make that decision easily; go on to eat more.

For me, one of my decisions was to avoid eating the cake in the first place...for quite awhile.

I also knew, because I had been a nursing student in college (I changed my major) and had taken a course on nutrition, I needed to eat healthily.  What healthily meant then is still pretty much what it means now although much more has been written about this and one can find  helpful information in, for example, James Greenblatt's book, Answers to Anorexia to address deficiencies that have built up over time. 

So, I put together an eating program that included the fewest choices of my "safe" foods that I also liked covering as much of what I needed nutritionally.  At some places where my daughter received treatment, the list remained rather long.  I found just the opposite to be of help.  My list remained short for quite a long time.  By long time, I don't mean a long time as in two or three months (the typical stay in a residential treatment center).  I mean for at least a year in most cases and on into two and three years - and more - for others.   There still remain a couple of things I avoid like the supersweet frosting on carrot cake.  Greenblatt talks about this, too.

In addition, I added supplements to my diet in the form of vitamins and minerals that are mentioned in Greenblatt's book.  I did this without much training other than my nutrition course and reading but it seemed to help.  My routine involved taking a multi-vitamin, a vitamin B-100 complex pill, vitamin E and vitamin C.  Later, on the advice of a doctor who also runs, I added omega-3 fatty acids in the form of capsules.  Following menopause many years ago, I added a few other things like B-12 (I have since learned through testing that my genetics make it difficult for me to absorb B-12), calcium and thanks to ongoing research and in spite of the fact that I live in the southwest, I added vitamin D because I go outside early and cover up from the rays of the sun plus slather on the sunscreen later. 

So, here was my daily diet for a long time:
Breakfast consisted of a small glass of orange juice/fruit, 2 eggs (usually scrambled), glass of  whole and later 2% milk, cup of coffee
Lunch consisted of fruit on top of a bowl of plain yoghurt and wheat germ sprinkled on top of that (thanks to Adele Davis - who some regarded as a quack but who was a guru to many at the time I was getting into recovery).
Snacks were fruit, particularly bananas or apples and a few crackers with cheese.
Dinner was salad, any kind of meat or fish, rice (no white potatoes for awhile) or sweet potatoes with butter, and lots of steamed veggies of many kinds with butter on top.
(Pretty much once a week for dinner I made a spaghetti sauce from an old family recipe - my grandmother introduced this - that included ground beef, canned tomato and mushroom soup, chopped onions and red peppers, and seasonings that include chili powder, paprika, salt, pepper and Tabasco sauce - still make this periodically today and my husband looks forward to it). 
Dessert was an apple or some form of fruit.
I would have a real coca-cola in the afternoon (I rarely drink it now because I hate the "new" coke with high fructose corn syrup as the sweetener and I refuse to drink anything with aspartame).
The amounts/portions were enough to at least help me maintain my weight which was still low at that time but not pathologically low anymore.

The absence of certain things tells the astute reader what my binge foods were.

Two years later I had also established a wonderful short early morning running program begun about the same time as my decision to quit b/p thanks to a neighbor down the street who also ran every morning.  Spending very scarce dollars on new red and white swoosh of Nike running shoes probably provided incentive, as well.  I know some people believe and/or have learned that excessive exercise is addictive, too.  I certainly felt good afterwards.  After sharing this feeling with a friend of mine who lived in New York City, he sent me a little paperback book - Thaddeus Kostrubala's The Joy of Running - and then began sending me his older copies of Runner's World.  Kostrubala's book helped me understand why I felt good after running.    For me, this decision to run was a life-saver because it became my barometer of how I was feeling and what I needed to do (eat and sleep) to keep enjoying my early morning run and to have a good day. 

[A side bar here, too, is that several years before I began my recovery from my ED, following the birth of my second child I developed a terrible case of painful arthritis in my knees and ankles - the after effects that limited me to avoid daily excessive exercise, which was a good thing.]

At this point  I learned that I could add carbohydrates like cereal or toast or even pancakes to my breakfast as long as they were paired with protein.  I believe, but didn't journal so I cannot say so for sure, I woke up hungrier and knew I needed to eat more so I could avoid getting a recurrence of the bronchitis I also used to get regularly when I was in my twenties i.e. I had learned, at least, that if my weight sank, I'd get sick.   Perhaps irrationally since I really didn't know, I believed that as long as I had at least one egg in the morning, I was safe adding these extra things.  I also increased my intake of milk by adding a glass for snacks.  And, cheese.  Now, being older, I have discovered Fairlife 2% milk.

Obviously, all of this was trial and error.  Also obviously this was a simple way to get back into healthy eating.  It worked for me.  I'm not saying it will work for everyone.  I frankly cannot imagine in the beginning having to choose each day from a very long list of foods or a table covered with different choices.  Maybe the acronym KISS fits here.

I also slowly began to gain weight.  Retrospectively, I understand now that my weight gain included  muscle gain.  Photos taken of me in my early thirties at the start of all of this show me to be quite slender; one could say too thin.  As my running activities increased to include adventures like my first marathon two years later and then running trails in the mountains around here after that, my body changed.  I remember thinking how good I felt and how healthy I began to feel.  I was filling out clothes in places I hadn't in the past.   And, I learned that if I wanted to keep running and stay injury free, I had to eat more calories.

I remember on the eve of my first marathon I attended a party and was offered a piece of chocolate cake.  I ate it.  I was shocked not only to savor every bit of it but also to realize that I didn't have the craving for a second, etc. piece.  A miracle.  That decision was my turning point that opened the door to me to start trying other foods that I had religiously avoided for fear of returning to my eating disorder.

By piecing together other posts on my blog, one can gather that over time I also realized I needed to address the effects of experiences I'd had earlier in life as well as ways of thinking that weren't doing me any good.  I began this process by attending an Affirmations class offered to employees where I worked.  That class opened me up to explore other avenues of therapy that continue, although not as intensively, to this day.  My blog attests to that.

As I said recently in another place on line, I wish I'd had training in dialectical behavioral therapy (DBT) when I was growing up.  I think it would have helped me cope with things that overwhelmed me and I think the theories would help anyone.  Mindfulness sure would have.    I'm pretty sure knowledge of these technique would have helped me communicate better with my loved one, too.  In fact, she taught me a simple grounding exercise that I find myself using unconsciously when I get stressed.    I was also given a book that I studied for weeks to implement some of these theories.

I remain in recovery and know that the tendency is still there, especially when I am very stressed.  I am very grateful.  [2/2017]

Generics sometimes don't do the job

As I have shared previously here, I have struggled with maintaining my mental health equilibrium for many years while my family member has been battling an ED.  I've heard the description "situational depression."  I've also heard PTSD.

Three years ago or so, I finally picked up the phone (for me, difficult to do because I am not a pill person) and called the number of a psychiatrist given to me by my excellent therapist.  What finally got me to the phone was a combination of feeling utter despair because my family member was unable to move forward, in fact had returned to self-destructive behaviors following the latest treatment, and I was reading a book to write a review for NEDA.  The book, by the way, was Crave by Cynthia M. Bulik, Ph.D.

I had come across a passage that described dysthymia and suddenly realized that the description of the disorder was how I felt.

If you're curious, you can read about my early steps in the anti-depressant world here.

Anyway, I migrated off the celexa which left me not caring about anything having to do with anything (talk about reducing anxiety!!) and started taking Buproprion, the generic version of Wellbutrin.

All went along fine mostly because, as it turns out, the manufacturer chosen by the dispensary used by my health insurance used a formula that worked for me.  As I've also mentioned earlier, my psychiatrist explained to me that any product by law can range from 85% to 125% efficacy of the non-generic.  And, I'll bet there's a genetics piece to this, too.

Then our medical insurance provider suddenly switched to a new dispensary.  The first go-around with yet a different manufacturer of Buproprion went just fine.  However, in the middle of the summer I received a refill from yet another manufacturer.

I didn't think anything of it until about two weeks later when I began to feel overwhelmed with my old feelings.  After one particularly difficult day (the best description I can come up with is not feeling right in my own skin), I reflected that night on my life and what might be different and the only thing that popped to the surface was the fact that the Buproprion I was taking was different.

So, I called the dispensary and reported this the next morning.  I did get an apology but no help so I called my psychiatrist's office.  He immediately understood the situation having been my doctor now for quite awhile and ordered the non-generic from my local pharmacy which filled it the same day - 30 days worth.  I was scheduled to see him in two weeks and that would give me a chance to see if the change made a difference (given how this med works) or not.

Taking the non-generic sure did make a difference.  I felt so much better!  The shocking thing, of course, is that the non-generic isn't covered by my insurance in spite of the fact that their dispensary sent me a worthless (for my genetic make up) version.  So I went from paying a bit under $50 to a bit less than three times as much for thirty days of my med.

I have also learned that many people have struggled with this same problem with the generic of this medication and have had advocates who've managed to over-ride the system so that they can receive the "real thing."  I am hoping to do this next.  [This failed.  My appeal was denied.]

Meanwhile, I had to spend quite a bit of time on the phone this morning getting the dispensary available to me to over-ride the old calendar renewal date for Buproprion and replace the rx with the new one for Wellbutrin sent in at the end of August by my psychiatrist.

It shouldn't be this difficult!!!!

Marjie Ruth: Are you adapting or changing.......

Another gem from Marjie Ruth.  As usual, at her request for those who might want to re-post this, please include her contact information found at the end of her essay.  Please consider leaving in as well the information about the support group she sponsors in case someone in the Tampa, FL area needs support and reads this.

I raised this topic last week in my meeting. No matter how many Al-Anon meetings I attend, how diligently I work my program, or how many times I repeat/review the Serenity Prayer and other valuable teachings, I still come back to this.......

"Our ability to adapt is amazing. Our ability to change isn't quite as spectacular."

 ~ from The Spellman's Strike Again by Lisa Lutz

Dear Family & Friends of the Eating Disordered (ffed);

Our support group will be meeting this Wednesday evening (9/11) at the Hyde Park Counseling Center in Tampa at 7:00pm, as usual. The ABA 12-step group is also continuing to meet at the same time, same place. Yes, it's an historic date that brings back memories just saying the date. 9/11 - where were you when you heard the news of the terrible tragedy taking place? We'll share that with each other at our meeting. And here's a thought: anyone under the age of about 17 has no memory of that day, so for them it will be yet another event to learn about in history class. Perspective changes everything. 

But let's move on to this week's opening quote which is from a very lighthearted, fun book. Actually, this is the 4th book in what has developed into something of a series, and I'd recommend reading the other three first, beginning with The Spellman Files. These books fall into the genre of "Something I Can Read That Absolutely Won't Depress Me & Actually May Make Me Chuckle"...and every few moments spent reading such, ends up being a micro-mini vacation for me. Ahhhh, sweet mindless escape. Are you surprised? You don't actually think I sit around reading books all about eating disorders do you? Heck, no. That would be a short path to depression and insanity. Dealing with a loved one's disorder is punishment enough. 

Now that's not to say that I haven't ever done such reading. I've indulged in my share of psychology text book searching complete with yellow highlighter at the ready. There's a bookshelf above my desk that holds a fair size assortment of books relating to eating disorders, some better than others and at least one that was a huge mistake. I've even spent time in a university library digging into medical books and journals with determination and a zeal to find some answers or at least some meaningful clues. My passion at that point was born out of a raging desire to find a way to get my loved one better, as in "back to normal healthy in mind and body" again. We seemed unable to find any professionals that could help, so I was determined to find the way myself. And there was nothing really wrong with my stumbling efforts to become educated, except that I harbored the delusion that I could make my loved one recover. I have never given up my desire to have my loved one be healthier and happier--that is a mother's plight. What has changed is that I've gradually come to the understanding, that I can't do it for her. 

With this realization comes release: release of my energy being funneled into trying to take control of her disorder; release of the unrealistic desire that there is some magic formula that will make it all better, ie The right treatment program or The right pill; release of the notion that the more I focused on fixing things, then surely my efforts would be rewarded. But don't think that I released such patterns of thinking and behaving easily. Ha...far from it! Please refer to the opening quote which very concisely sums up my journey with ED. Our ability to adapt is amazing. Enabling is a form of adapting to disordered behavior. Our enabling just makes our loved ones more able to indulge their addictions. We adapt our life patterns of thinking and acting to accommodate their addiction. Even upon recognizing this--as the second part of the quote points out, Our ability to change isn't quite as spectacular--changing our behavior is anything but easy. I still find myself slipping back into old thought patterns and needing to regain my footing and even re-examine choices in light of possible enabling that has crept back in. It seems that the only constant in life is change, and yet I'm consistently balking at & even feeling incapable of changing my behavior or thought patterns.

For anyone, change is not easy, either to accept or to achieve. For someone with an addiction, no matter what it is, change is terrifying and seemingly impossible. "They" need to change their addictive ways. And "we" need to change our enabling ones. Both tasks require a great deal of time, determination, and practice. 12 step meetings are there for all of us. Plenty of books provide helpful encouragement and advice. But for each of us, taking good care of ourselves is a critically important point. We need to treat our bodies and our minds in a healthy manner, and one ingredient in doing that is taking the time to rest and recreate. 

Which brings us back to the books by Ms Lutz. When was the last time you treated yourself to some quiet, non-working, non-stressing time? If you had trouble answering that inquiry, then it's been too long! I encourage you to find yourself a good book and a comfortable chair in a quiet spot and work on some recreational therapy for yourself. Put the cell phone on mute, let the computer hibernate, and turn off the guilt. Start small if you need to, but try it for even 5-10 minutes as a first step towards making a change in your own life. Tell you what, if you'll promise to give it a try, so will I. Let me know how it goes!

Marjie Ruth

sruth1@tampabay.rr.com

marjieruth1@gmail.com

727-244-9011 (c)