Sunday, February 28, 2010

I didn't puke and I didn't cry...

"How do you like me now,
Now that I'm on my way?
Do you still think I'm crazy
Standing here today?
I couldnt make you love me
But I always dreamed about living in your radio
How do you like me now?"

There couldn't have been a better song playing on the radio when I left the gym today! It made me laugh when I heard it. Toby Keith pretty much summed my mood up in his simple lyrics!

Today I let the past be the past at least for an hour. I accomplished today what I never thought possible. I took part in a group physical activity and didn't feel like the outsider looking in. I felt like I belonged as much as anyone else there and that I wasn't the focus of laughter or stares. Finding that place was a victory I have waited 39 years for.

This weekend was "fitness expo" at Eagan Lifetime fitness and as part of that there has been a series of group workouts lead by the Personal Training Dept Manager. The final one was this morning, Tiffany's Sin Bin. Despite my best instints I decided to give it a shot. I went into it terrified. 90 days ago I could barely walk, I am not sure what made me think today I was ready to take on Tiffany (and her reputation of making people puke) but I decided to give it a go. I am so glad I did.

I can't say I was able to keep up, I did 1/2 the speed and 1/2 the incline of most people in the group, but that doesnt matter to me. What matters is I did it!!! I got through every exercise, I didn't give up and more importantly I didn't feel self conscious doing it. To me that last piece is greater than any olympic gold medal!

I also learned today that it is safe to let others help you fight this battle. I can't thank Ann and Katie and Scott enough for their encouragement around today! Letting others into my world is hard, the blog provides me some safety, I dont have to share face to face, but standing there across the exercise bands today there wasn't much place to hide, but I felt truly supported and welcome. I KNEW if I faltered there was a whole group of people who would be there to back me up. That is a new reality for me!

I saw a quote today on a friend's facebook status "Nobody can go back and start a new beginning, but anyone can start today and make a new ending. - Maria Robinson" Today is the first day I am ready to dream for that new ending!!!!

Step two to weighing 338 pounds, develop a chronic illness (21-25 years old)...

Of all the things I hope to post in this blog, today’s post will most likely be the longest, the hardest to write and for many people in my life the hardest to read. And for many it will also be the most surprising, many that knew me growing up have no clue I went through this, and most that have known me since 2000 have never been told.

This part of my life has most defined who I have become physically and emotionally, but and at the same time is the part of my life I have worked the hardest to not let define me as a person. On any given day I have had varying degrees of success with that goal.

In 1991 I was about to turn 21 years old, I was a sophomore in college and was heading for a career in either medicine or biomedical research. My weight was around 200 pounds and I was starting to overcome some of the insecurities from growing up. I was starting to come into my own as my brain could now trump my body. That all changed in the blink of an eye.

A few weeks short of my 21st birthday I began having debilitating headaches and Vision problems. After a long and involved search for an answer I was finally diagnosed with Pseudotumor Cerebri (PTC) which is now known as Idiopathic Intracranial Hypertension (IIH). PTC is a rare disorder without a known origin. The short version of the disorder is that your body has too much of the fluid around your brain, spine and optic nerves (cerebrospinal fluid) and that excess fluid produces the same symptoms as a brain tumor (hence the name pseudotumor).

If you read the literature, most people who are diagnosed with PTC are women 20-40 who are overweight. But no one has ever figured out which is the cause and which is the effect. Also many children and men are diagnosed but these get less documentation. I personally believe I have battled this disorder since the year where I was taking antibiotics every other week. I have come to see that during that time something in my body changed drastically. I can look back now and see symptoms of the disease throughout my childhood and teen years.

My adult battle with PTC was a nightmare simply put. In the 6 years I was actively fighting it I had 5 shunts implanted, I had 5 optic nerve sheath surgeries, 80+ spinal taps, took every medication on the planet, fought meningitis twice and spent months at a time in the hospital. I lost my vision multiple times as well.

So how does all this fit into my weight loss journey? As I mentioned above, PTC has been reported to be linked to obesity and weight gain and with a disease that most doctors have never heard of and which is difficult to treat, it is very easy for the medical profession and those supporting someone going through the disorder to slip into a “blame the victim” mentality. It is even easier for the person going through it to find the disease their own fault. It is a disease that is unrelenting and for someone like myself who tries to control the world around them, being at the mercy of a disease you can’t control was overwhelming, and sent me multiple times in a life and death battle with depression. It also exacerbated every bad habit and misconception I had about food and eating and my body.

This is probably a great place for me to debunk one of my favorite myths. Anorexia does not only happen to people who weigh 80 lbs.!!! You can weigh 200 lbs, 500 lbs and still battle an eating disorder. The difference is when you weigh 200 lbs it is much harder to be taken seriously and to find treatment. I can say this from personal experience. I mentioned in my earlier post that I have a tendency towards not eating, well blaming myself for PTC sent me over the edge on that. For the better part of 2 years I struggled with not eating, with exercising to excess, with bulimic behavior. I would land in the hospital over and over when my bloodwork would bottom out, I would be patched up and sent back out to battle again. All the time people looking at me and seeing an obese woman and telling me if I would just eat less my PTC would get better. I can honestly say had my neurologist not stood by me, held me together and dragged me to treatment I probably wouldn’t be here today.

Most reading this are probably at a point of shock already, but please bear with me. As the journey was yet to take another turn, one that would change my life more than anything PTC could hand me.

As I mentioned, one of the treatments for PTC is shunting. Not the typical shunt most people think of, from the brain. But what is known as a lumboperitoneal shunt. A shunt which drains fluid from the spine to the abdomen. This kind of treatment never really worked well for me, shunts would fail after about a month, so when my neurosurgeon recommended a new type of shunt, with a value in the shoulder that could be used to flush it, I thought my prayers had been answered. I couldn’t have been more wrong.

I had the shunt implanted in January 1996. Fourteen years ago. The moment I closed my eyes in the OR was the last time my body would even resembled normal. I woke four hours later in the recovery room completely paralyzed on my right side (from head to toe). We would later learn that the shunt had dislodged between the operating room and me waking up. When they did an x-ray it was found wrapped around my shoulder like a bow. In the process of pulling out of my spine it damaged a significant number of nerves which controlled most of my right side. I spent the next few months learning a whole new life. I had to learn to use my hand again, I had to learn to walk again with drop foot and no sensation and I had to learn to live without feeling in half of my body. And I still live that way today!

Through a lot of research and some hard work my neurologist and I found an answer to PTC at least for me in 1996. Ironically after vowing to never have another shunt we looked in other directions and found my answer. The disorder appears to have a major link with the neurochemicals in the brain and an enzyme imbalance in the liver. And by avoiding many medications, artificial sweetners and certain foods I can now keep my PTC in check, although it is always there and sometimes rears its ugly head, but now I know how to fight it back.

But the enduring part of the journey has been the nerve damage. From that day in January forward exercise and walking became an ongoing challenge for me. I fell many times in the first few years, I broke bones and hid from the world for fear of falling in public. And every fear that I had about being looked at and laughed at was amplified. I was now not only that fat ugly girl, but I was also disabled. And everyone of those things lead to immense weight gain over the last 14 years. But I will save that part of the story for the next post.

Saturday, February 27, 2010

90 days....30 pounds...and a different life....

I am big on milestones and anniversaries. As corny as they can be, they still fit how I think and help keep my life organized and segmented. So I would feel amiss if I didn't mention today as a special marker. Today marks 90 days since I started working with my trainer, Gui. It sounds so melodramatic to say my life has changed since I met him, but it is simply the truth, as was pointed out tonight by a friend.

Ninety days ago I was 30 pounds heavier, but there is so much more to the change than weight loss. When I met Gui I wouldn't even consider using a flight of stairs, I was scared to death to walk outside in the winter (more on that tomorrow), I could barely walk the distance from one gate to another in the airport without being winded and sweating and having to stop. I spent my time figuring out how I could do the least possible physical activity necessary and avoided anything I didn't absolutely have to do. And the worst part is I had accepted I was doomed to spend my life that way. I had accepted missing out on important things in my life because I couldn't do them.

Fast forward 90 days, I can't say I am a different person, because my heart and my mind are still waiting to catch up with the changes in my life. But I can say I am living a completely different life. I have gained back so much. I now can walk the length of the airport terminal in shoes with a heel and more importantly DO THAT BY CHOICE even when the tram or a cart is an option, I now take the stairs without fear of falling, I feel lost if I don't go and workout and genuinely look forward to my workouts. And most importantly I am back doing. I no longer plan my life and my time with my friends around whether I can keep up, around how little walking can I get away with and no longer fear my body.

I really feel in the last 90 days I have rejoined the living and know I would never have accomplished that on my own. Thank you Gui for helping me find my way back! You ask me periodically if I feel different, I hope this answers that question for you!

P.S. When I set this blog up I knew I wanted to have the option of this being about more than my side of the story, so I have asked Gui to consider posting also, to share his side of my journey, of the journey we have undertaken together. So periodically you may see posts that do not come from me.

Step one to weighing 338 pounds, growing up fat (0-21 years old)...

I grew up in an upper middle class family in the Hudson Valley of New York State. Growing up I had 1 brother and 1 sister (my wording on that will make sense in tomorrow's post) and two very dysfunctional parents. Actually I think most of the people who grew up with me would say it was a dysfunctional town. It was the kind of place, in smal town America, where everyone smiled and kept up great appearances for the outside world, but almost all the families were melting down behind closed doors. Where moms and dads took their kids to little league and swimming lessons at the same time as abusing them in every way imaginable. Being it was such a small town I went to school with the same 25 or so kids from the time we started pre-school until we graduated high school. Everyone knew everyone and more importantly, everyone judged everyone.

I have never had a healthy relationship with weight or food. I don't know whether I blame my parents, or just inherited their bad habits. Both of my parents were what would now be termed "morbidly obese". Looking back I remember my mom trying to exercise once or twice. I don't ever remember my father doing anything very physical and mostly remember him mocking any time I tried to exercise. My brother had amazing metabolism and could eat anything in the world. My sister was heavy and then incredibly thin and battled anorexia through her teen years and beyond.

As for me, I started out life a thin child, until the age of 5. It took me nearly 20 years to realize that the first turning point in my battle with health came that young. Between the age of 4 and 5 I had tonsillitis every other week, and was treated with antibiotics every other week. I wouldn't know it until I turned 21 but this ended up being a defining decision in the rest of my life. At age 5 I had my tonsils removed and my battle with weight began. I still to this day remember coming out of that surgery and eating nothing but ice cream for the next week and the next 34 years!

From that point forward my weight just continued to increase. By age 13 I weighed 185 pounds and by the time I graduated in 1988 I was over 200 lbs.

Even growing up I knew that I wasn't fat because I ate too much. Eating too much has never been my problem and to this day is still not my problem. I do not eat in excess, I do not eat all the time. My problem was that I would not eat breakfast, lunch would often be very light and then I would eat my heaviest meal at night. And when I did eat it would be the wrong things and in the wrong portion size. Or the other reaction of mine which is not to eat at all, it has never been anything for me to go 18 or more hours easily and not eat a thing. This pattern of not eating throughout the day evenly has haunted me my whole life and is something I am still challenged by.

Growing up fat in a small town was miserable. There is no other way to put it. I was teased and bullied for as long as I can remember and never felt I fit in - at school or at home. I now know I am lucky I was incredibly blessed with a great intellect, but as a child and a teen those aren't the qualities you want or value. You want to be pretty, you want to be popular, you want to feel you belong and I had none of those. And if I am honest I have never found them and search to this day.

In some ways, on the inside, I am still that fat little girl hiding in the back of the room trying not to be seen. That is definitely the part of me that has struggled with working out in public to this day. Joining a gym and having others look at me is a continuing challenge for me on this journey, and one I have struggled with my trainer over. From the moment I made the decision and set up an appt to join Lifetime Fitness (in Eagan MN) I have fought that notion that everyone is laughing at me for even trying to exercise.

My goal was to be as invisible at the gym as possible (which is not easy to do at 311 pounds, my starting weight when I joined in November 2009). As much as I knew I joined because I needed the help of the professionals there, their attention has really weirded me out, to the point I found myself snapping at my trainer if he was talking too loud during our sessions because I knew others were looking at me (and did I mention I have a trainer who likes to bounce around and scream so we were having that conversation constantly). As other staff members (nutritionists, metabolic testers, trainers) were starting to become involved in my program and were talking about me more, I found it harder and harder to get myself to the gym. Even though on a logical level I knew they were all trying to be supportive and helpful, my emotional side had images of them sitting around in their meetings laughing at how little I could do, how ridiculous I look in shorts, or how fat I was.

The ultimate mortification for me was the day I was standing in the locker room and a trainer I had never met walked up to me and said "I just have to tell you what a great job I think you are doing". While a normal person would have taken that as a great compliment, my immediate reaction was to rip my trainer apart for her knowing anything about me. He of course laughed at me (that's a good thing with him) but also seemed to understand that at that moment I just couldn't internalize that this wasn’t Germantown NY, and that I wasn’t the fat little girl being set up by people as the butt of their jokes anymore.

I am not sure I am ever going to find joy in being looked at while working out, but I am happy to say I think I am finally turning a corner on this though, and it is only in the last week to 2 weeks that I am becoming more comfortable with it. I am slowly coming to value that I have found the right people and am working out in a safe environment where both the staff and the members truly do want to support each other and are in it together and where I am not being judged.

Tomorrow will be my real test of that, as I am considering for the first time attempting a group fitness activity at the club. A thought which would have terrified me a month ago. Anyone want to come join us at 9am????

I wouldn't change a thing....

As I started my post this morning, the first of the three on how I got here, I found myself concerned about how people might react. I have been through a lot of tough times in my life, and it tends to ellicit feeling bad for me in some people. That isn't the reason I am sharing my story. I am not looking for sympathy or pity. I don't need either.

To help prevent that, I have decided to preface my story with an explanation of how I look at the world and all I have been through...

I live my life on one simple belief. EVERYTHING happens for a reason. Good, bad or otherwise, everything that we experience, everything we struggle through, everything we sail through, they all make us who we are. Every step in our journey is crucial to the moment we are currently in.

As you read my blog you are going to see that life hasn't always dealt me the easiest hand of cards, but if I were given a chance to go back in time, I can't say I would change any of it. It has all made me the person I am today, and overall I like that person. I am strong, determined, loving, protective and at times fierce. I know the ups and downs of the world and because of the downs I can truly value the ups.

So please don't ready my story and feel sorry for me. I don't!

Friday, February 26, 2010

Shabbat Shalom...A day of rest

Hopefully I won't make this all too confusing to read if I interject some of the current stuff as I post the "how I got here" stuff. I feel like I need to vent today. It is a really weird day. Not one of my better ones work wise and as shocking as it is for me to say this, I am learning to use exercise as my escape and to get me out of a funk. No one will be more shocked at those words than I am. And if that caught you off guard the next part will floor you.

One of the "recommendations" my trainer made was that I stop working out 7 days a week (typically I do three days of strength/resistance work with him and 4 days of cardio on my own). In 3 months I have probably missed 3 days of working out and tried to compensate on those days by walking the mall or the airport terminal.

So now I am going for 3 and 3 and a day of rest. Unfortunately I have run out of days to skip in this week so today it is. My day to do nothing physical. In my previous life I would have found this a great treat. Today it is just making me feel cagey and anxious. Who would have thought exercise would ever become my coping mechanism.

Three Easy Steps to Weighing 338 Pounds

I handle life by analyzing it, it's how my brain works. I also believe you have to understand where you are starting from to undertake any successful journey. Even though we leave where we started behind us, it has made us who we are and shapes how we travel forward.

So naturally I have spent a lot of time figuring out, how did I get to here? How did I end up letting myself get to 338 pounds? As I look at the progression I see my life in three major time frames.....ages 5-21 (the early years), 21-25 (life with PTC) and 25-39 (life after nerve damage).  Each time frame added to how I got here, and over my next few posts I will share the how.

I promised in my intro to be honest and straight forward, so here comes from my first disclosure. Two of the few pictures of me at the start of this journey. The first picture was taken in February 2009. I was approximately 330 lbs when this was taken. So 8 lbs less than my lifetime max

The second picture is from May 2009. At my highest, 338 lbs. BTW other than my weight, the lesson in this picture is don't stick your tongue out at the photographer, someday that very picture will be the one you have to share with the world.


Admiitting the person in these pictures is me is painful and embarrassing, but as I am realizing more and more these days, even though the person in the picture weighs less, I am still in the brain of the person you are seeing. And I need to acknowledge that and deal with it, there is no good hiding who I was and am.

Thursday, February 25, 2010

It's my story and I am sticking to it!

Welcome to the greatest adventure of my life, my journey from 338 pounds to a healthier and happier way of life. I started this journey as a very private trip. I was embarrassed where I was starting, I was scared of where I was going and I wanted to take this trip quietly and without fanfare. But through my friends, my facebook supporters, my trainer and others who started down this road with me or who have joined along the way, I have come to realize that changing your life is team event and that the road is easier to travel if you let others walk along.

I have no great secrets to share, I am by no means a role model or have all the answers. I can't say that my journey is the right path for others, but I have chosen to share my story and hope those of you who come along for the ride will share yours too.

Welcome to the ups and downs, the twists and turns and the roller coaster of regaining life one step and one pound at a time.