Getting My Life Back

The enormity of the news that I will be enrolled in a program to be amongst the very first people in the United States to have access to
Cimzia is starting to hit me. I have had two calls from the Pharmaceutical Company in the last two days, assessing my history and lifestyle to incorporate into their trial data; they tell me it's a matter of days before I get a call from the pharmacy itself to arrange shipment of the medication and home visit by the Nurse Practitioner. According to the studies, there was a 61% favorable response rate to this medication in trials held in Brussels (539 patients, and I love Brussels Sprouts) within 6 weeks, and 39% of them went into remission. This is just in the first six weeks.

As Dr. V- explained the drug to me, it is very similar to Remicade which I have taken in the past with adverse and very serious side effects forcing me to withdraw. Apparently, the molecules of the drug are in the shape of a Y with the favorable antibodies at the ends of the top like hands. The part of the drug that they believe causes the bad reactions in many patients are on the stem of the Y. In the case of Cimzia, the hands are cut off from the stem and then bound to another molecule that does not provoke the same response. Patients like me who's IBD responded well to Remicade but who could not tolerate the regimine are prime candidates for Cimzia.

For the first time almost since I was finally diagnosed with my Crohns Disease (my early 30s although 20-20 hindsight says that I was suffering with it, undiagnosed, from age 15 on), I have hope. More than hope. I have a feeling about this new drug. Like it's going to be the answer to my dreams and my living nightmare. But that leaves me with a disquieting feeling that's bringing me to tears. Am I ready to be healthy?

This is not as crazy a question as it sounds like at face value. Think of my (and many of my readers) weight issues. I went for almost my entire life, childhood and adult, obese to morbidly obese. When, five years agoo I found my way to Richard Simmons and Slimmons, my identity was wrapped up in my size and appearance. The Weight Loss Journey, while on the surface a very positive thing, has been agonizing. It's hard to adjust to the new reality. Social interactions are not what I thought they were. I started to understand why the obese are discriminated against and it's not about appearance. Flirting with the opposite sex, and ultimately a serious relationship was an outcome. Other's expectations of me are high now, and my expectations of myself are high too. Often, I don't even know who the person staring back at me in the mirror is these days, and am dumbfounded at the things I say and do.

It's been a very positive experience, but I fully understand why my friends with weight don't just change up their lifestyle and lose it. It's been one of the most scary journies that I could ever imagine going on. And this journey gave me years to adjust to the new reality.

Another basic component of my reality is that I'm sick. At times, critically sick. It's stunted my career as well as my personal life. Opportunities that others take for granted to me are denied. Even something as simple as going to the market or the movies or even a short walk around the block is fraught with danger of medical issue and embarassment. I never know what is going to happen and when. I am always fearful of going out and trying new things.

And now the possibility lays before me that these limitations may be removed from my physical being within two months. How do I cope? It's as big a change as the weight loss. But without time to get used to it.

Do I go back to my old career? And if yes, is there even a career to go back to? How long will the drug work for? And how bad will it be if I relapse?
Will it be years - as it has been adjusting to my appearance - before I adjust to the idea that I can go out without fear? And without the illness as a basis for my operation, will I be able to meet others (and my) raised expectations of me?

Big, scary stuff. Not enough to stop me from going forward with this amazing opportunity, but bad enough to cause me nightmares.

I only hope that I have learned enough about my own capacity to adjust in the past years to see me through.

On Keepin' On

I had my first appointment - this go-around - with Rocky at JMP Rehabilitation (Physical Therapy) today. It was a strange experience. Deja vu. I felt like I had been there before and, in fact, I had. Many times. A lot of the same supportive staff who have helped me over the years still work there and seemed very happy to see me. And in a way, I was happy to see them too. Of course I'd rather have reunited under more social circumstances, but it is what it is.

The immediate burning question on their mind, knowing where I have come from and how I lost weight, was if I still exercised withRichard Simmons... to which I, of course, answered "Yes!" They can see that I've somewhat maintained my 200+ pound weight loss, even with my current struggles in that arena. I've gone to Rocky after orthopedic issues at all of my differing sizes, and they've always been helpful, but with me being of normal BMI, he's more helpful. Probably because I'm more able to help myself.

Everyone looks about the same. Maybe a little older and some a little heavier, but they always were very good looking and athletic and it remains so.

However, my appearance is really different than the last time I visited. That last time, I was so ill that the Paramedics were called after I had collapsed on the way out. They had dismissed me before the appointment was finished because I looked too sick to partipate and apparently they were right. So I really don't know if their attitude today was of concern for my health and the historical consequences or disquiet because I don't look like the same person that they'd known for all these years (25).

One of the fortunate-but-unfotunate issues of weight loss is that you discover just how important appearance really is. More so than I had ever imagined. I wear a lot of make-up now; put a lot of emphasis on hair and clothing. It's something that Richard taught me; a lesson that I resisted for years before I finally aquiesced. People treat me differently at my current weight, and especially with my attention to cosmetic impact. Much better. But it's awkward and disquieting for me.

I've talked about this with my Therapist on many occasions. How the world works so differently than I had thought for those many years. How unfair it is that we're primarily judged on appearance rather than substance. And how I still feel like a fish-out-of-water under most circumstances. Like I don't necessarily deserve the attention that I get.

All the same, discomfort be damned, I'm not going back from where I came. It's not that I like how I look now (I don't), or even that I enjoy the preferential treatment I receive (it makes me feel like a fraud). But what I do enjoy is that I can go anywhere I want to go and do most of the things I would like to do that I used to only get to watch from the sidelines.

The bottom line is that even though I don't fit socially and don't know if I ever will, I fit in much better.

Making Plans

Apparently, I remain suggestable. Despite myself. When I would love to just do my own thing, especially where my weight maintenance, and hopefully loss is concerened, I am in situations where everyone wants to help me. And help me they do, despite my announced intention to the contrary.

On Tuesday, I went to my regular weight maintenance class at HMR where the unit, since the new year began, is on getting back to basics.

It has been the perfect unit for me since, in December, I let go of food sheets for the first time in several years, and not so coincidentally, gained four pounds. That on top of the weight that I had been slowly gaining over the prior six months. An eight pound increase.

I did a lot of things right in December, though, including continuing to go to exercise class, going to my weight maintenance class (where - ahem - I had a perfect attendance record all through November and December), and weighing myself every single day. Despite the fact that I did not like what I was seeing on the scale. Also, I not only did not hide the fact that I was failing to keep records, but I made sure that both Lucy and Richard were aware. Both encouraged me to pick them back up again, but wisely did not press the point.

I truly believe that being honest with myself, and with others, was what made it easy for me to start over right after Chritmas.

But keeping food sheets has proven to be only half the issue. I actually needed to address the problem eating areas that was driving my weight up. It started with purging my home of all the junk and processed foods that I had collected. That has proven not to be enough, though. While I've stopped the weight gain dead in it's tracks, I've only dropped a couple of pounds and, with my impending knee and foot surgeries coming up (my friend Wendy refers to me as "At Wounded Knee." Thanks, Wendy - lol!), I need to get more agressive. After all, the exercise is going to grind to a halt during recovery.

So what to do? I'm not good at limiting myself at foods, nor am I good at making food plans. "Decisionless days." Lucy calls them. As soon as I lock myself into a set menu, I revolt (against who or what, I don't know) and deviate. So I've been very resistant to the idea.

The thing is, though, that pretty-much everyone who advocates weight loss says that a plan is essential. Richard reiterates it over and over again. Lucy promises us that weight loss is not very likely without one. And in the face of this pressure, how do I deal with it?

Well, Lucy has seemingly come up with an idea for her class that may do the trick. Last Tuesday, she suggested that we not plan every bite that we are going to eat that day, but instead figure out what we were going to do for exercise, how we were going to get our minimum five fruits and vegetables per day into our diet, and - for those who participate, not me - how and when we were going to take our meal replacements. She had us pull out our HMR Food Journals and commit these plans to paper. The idea being that 1.) we are way more likely to maintain a healthy lifestyle if we commit to it in writing and 2.) we are way more likely to displace bad habits by crowding them out by good than by just saying no.

I did not want to write anything down, but I humored her and did so.




Surprisingly, I did not have much trouble keeping the plan. I was resistent to the idea, though, and did not do them yesterday. But then woke up this morning and thought "Why not? I'll give it a try."

The results were startling. Except for not making a salad to go with my dinner because I was not hungry enough for it, and not using tomato sauce on my baked spaghetti squash because when I pulled it out of the refrigerator, it looked like a science experiment, I kept to the quasi-plan perfectly. I ate other foods in addition to my written record, but pulled my day in at a net calorie level (food intake minus exercise calories burned) of 1150 calories. Wow!

So when I got home this evening after Richard's class, I decided to try it again tomorrow. Wrote down my exercise plan, which by the way, included the 25 abdominal crunches and the four push ups that Richard, this evening, implored us to do on a daily basis. Came up with a plan to get more than my minimumly prescribed roughage, and included a Benefit Bar treat in the mix. And I also sketched in an outline of an exercise plan for Saturday.



Now, I don't pretend that my troubles are over, that this new form of less-commital weight loss plans is going to be the panacea for all that ails me. But I'm willing to give it a try.

I'll let you know how it goes.

Who am I becomming?

Tonight, Richard led a chat about Peace in honor of Martin Luther King. It was a rather profound subject for me, one of self revelation.

Of course, he turned the concept of MLK's peace around to a discussion of inner peace. "Are you at peace with yourself?" he asked. And my immediate response was "no." I have all sorts of issues in my life, some of which make me very upset.

He asked us to rate our level of peace on a scale of 1 to 10. I gave myself a 5. I was going to give myself a 2, then realized almost immediately that I wasn't being honest. I've been at "2," I'm not there now.

As the chat went on, I thought about what was upsetting me. Family. I can't really do anything about it, right? Not really. The people who I am unhappy with are struggling with their own demons. I have removed myself from the situation, at least for now. I have not removed them from my life, nor do I intend to. But like they taught us in "Junior Life Guards" at Camp Lakota way back when I was in my early teens, when you're dealing with a drowning person, the first thing is make sure they don't get a grip on you and drag you down with them. That's not going to happen. Not anymore.

Then, there is the other thing. Richard's "Sweating To the Oldies" DVDs came out at the beginning of the year. Pleased that my picture was picked up on the packaging, I was even happier that his "Love Yourself and Win" motivational program was a bonus disc inside. We filmed it in September of 2006; I was proud to be a participant.

The thing is, though, that I was horribly ill at the time of the taping. Only a month out of medical crisis stage, my participation was questionable right up to the very day. I must have driven them crazy with all of my special requests to make that appearance happen. I remember asking to have a later call time than the rest of the cast because of fatigue; permission granted. They allowed me to lay down on the sofa in the lobby when everyone else had to be in place in the studio, only requiring me join them at the times they were actually filming. And I was allowed free access to the facilities in deference to my medical situation, despite the fact that nobody else was allowed to leave except at specified breaks.

It was hard. In fact, looking back I have no idea how I got through it. I talked about "Practicing Patience," a subject with which I am intimately familiar, given my situation. I remember how weak I was... Richard had to help me up the stairs onto the stage, and then down again at the end. They told me, after my segment filmed, that I could go home, but I chose to stay. I was so weak that I was only able to sit up in my chair by leaning on the table next to me.

And after the filming was done, I went home, went to bed, and was too tired to come out of my condo again for a full week. No exageration.

My recollection, though, was that I had done pretty well in the interview. That I looked OK, even though Adele later told me that in my picture with Richard (taken right after we were finished), my body looked great but my face was awful. That it was clear how sick I was. I didn't think about it again after we were done with the conversation. Until this past weekend.

Well, the DVD came out, and I finally got a copy. I was about to put it in my player when Eric unexpectedly showed up, so we watched it together. Or should I say, he watched it. After the first 10 seconds, I couldn't look anymore.

Everything about that go-around of illness came flooding back to me. I looked absolutely awful, like death warmed over. Moon faced (from ultra-high levels of steroids), and almost incoherent. I turned my face into the pillow on the sofa and cried. Eric insisted that I didn't look so bad. "Just bloated and nervous." But he is looking through the eyes of love and also, this matter falls in the same category as "Does my butt look big?" so I wouldn't expect to get a bluntly honest answer.

Later that evening, I went over to my good friends, Sandy & Christiane's home and brought the DVD with me. We played it; they reacted with horror. "How could he have filmed you in that state?" was their question. "Why on earth did you do it?"

Well, Richard was pressed and I certainly wouldn't blame him. And I try to keep all commitments that I make, regardless of my personal situation. Poor Richard... the emphasis of this recording was about living well, feeling well, and looking great, and he had ME on there like a zombie from hell. I have been so upset about it.

I couldn't pinpoint exactly what I've been upset about. Certainly I'm not upset with anyone in particular. Nobody is to blame here. Not Richard, not me. But I've been bordering on a level of hysteria all the same. The person in that DVD was not me as I really am...



So fast forward back to tonight's chat. As Richard asked question after question. As I reflected on the answers, I realized that most of my responses belayed a level of security and lack of anxiety that I don't think I've ever felt before. And then it came to me as an epiphany.

I don't need to be upset about the DVD. It is what it is. Richard had the power to edit me out... to edit somebody else into that place I occupied had he wanted to. There were a number of people who participated that day that did not end up in the can at all. Any one of them could have been put in my place, their comments cut and paste to sound like they were answering my questions. So if there is damage done by the way I looked and sounded, it was by choice.

And even though I hate the idea that the 'monster' who appears on that DVD will probably haunt me for some time to come (people are ordering that set and watching it), I did nothing for which I can feel anything but pride. I have lost weight. I looked like what I was at the time. Somebody who had just survived yet another round of near-death experience. Who, had I been at my old weight and health level, might not have made it. I made it through that day as a symbol not of illness, but as a testament that anything that does not kill you makes you stronger.

Am I completely at peace with myself now? No, not really. There are many things which I would like to resolve.

I'd like to be healthy, once and for all.
I'd like to lose the 7 pounds left from the holidays, and maybe even a little more than that.
I'd like to have my surgery done and over with, and be able to walk without pain.
I'd like to be financially stable, and maybe even a little bit affluent.
I'd like my life to mean something, rather than just be a day-to-day existence.

Without these stresses, though, I may not feel compelled to evolve and grow. And that is paramount over all other things.

And when I look at what I do have, what I have achieved, physically, mentally, and emotionally, I realize that I am more at peace with myself than I thought. Maybe an "8." Things could be worse.