There is so much on my mind that I have had a difficult time putting my thoughts into words. The following maybe scattered, so bear with me.
How is Kourtney doing?
Kourtney was wondering when I was going to blog because she was wondering how she was doing (with that sense of humor she is obviously doing well). We hear her giggle more which means she is bugging Shaelyn or she is making someone grin with her witty sense of humour. She feels loved and respected at school and just recently sang at her school talent show. (She was more nervous about walking up the stairs to walk on stage than actually singing.) Kourtney has some amazing caregivers in her life, as well as some special friends who are committed to her and bring all of us a lot of joy. She is doing very well, (ahem) comparatively speaking.
Not to be a Debbie Downer, but it 's like the pink elephant in the room that you know is there but nobody talks about. Being a teenager with a disfiguring, debilitating disease is very difficult. There, I said it. We still are faced with a 15 year old girl who requires one to one care, sleepless nights, long dressing changes, many meltdowns and resistance to physio. The years of being undernourished and countless infections as well as the course of the disease has left her body with irreversal damage. Sometimes I don't even know where to begin to get Kourtney seen by the right doctors. For 4 years I took Kourtney faithfully to weekly hospital visits, with little change to Kourtney's condition. But just as Kourtney has anxiety about walking up stairs, I have similar anxiety about going into Children's Hospital. The thought of explaining Kourtney's history to a resident, watching her in excruciating amounts of pain getting bloodwork, attempting to excuse her lack of motivation for not exercising and just the thought of the drive in makes me break out into a cold sweat. There are so many things that I should/need/could be doing for Kourtney that I just get overwhelmed thinking about it. So instead I have taken the stand to let life with EB happen.
To my biggest loser friends . . .
In my new quest to let EB life happen I feel like the dark cloud that had been hovering around my head is gone. I'm not sure exactly what has given me a new lease on life; the antidepressant that has dulled all my emotions or the fact that I quit trying to control a disease that is not mine. I did something I never thought I would do . . . I joined a gym! It may not shock you as many of you know I am an avid runner and biker. I love exercising outdoors . . . even in the rain. The thought of a sweaty body beside me on the elliptical isn't my idea of fun.
Although I was active it was becoming obvious to me that I needed to do something different in my exercise routine. *Almost* 3 years ago I turned 40. I did a celebratory "weigh in" on that warm, sunny day in July and much to my despair I hit a new decade of weight as well. It was devastating for me to tip the scales on my 40th birthday. I justified the weight gain on antidepressants and my metabolism slowing down. For the next 2 years I did my best to stop the scale from climbing further into the next decade, with fancy diets, yoga and even stopping my antidepressants. No matter how much I exercised, it was my love for food that stopped me from losing my middle age weight.
One year ago in June I did my 30 day challenge. I exercised everyday for 30 days, and tracked my food intake using my fitness pal. I lost 10 pounds. I kept my weight off, Kourtney got sick, and with that stress I lost another 5lbs. During that time I was encouraged to go on antidepressants. The last time I went on an antidepressant my appetite increased and I was emotionless. I fought going back on them due to unwanted side effects. But the tears wouldn't stop and I came to realize I had to go back on them so I could be strong for Kourtney.
So as Kourtney got better the and the antidepressants kicked in the weight slowly started to settle again around my middle. My back and shoulders were sore from doing dressings changes in awkward positions and getting Kourtney up and down the stairs, in and out of the van, as well as many nights of sleeping in the parent hospital beds. Circumstances that followed in February and March left me emotionally spent. I felt so rundown that I had no motivation to exercise.
After spring break Angela and I decided our 40 year old bodies needed some weight training so we decided to join the gym together. We had a complimentary personal trainer assessment when we signed up for the gym. Like two school girls joined at the hip Angela and I wanted to have the same routine so we requested to do the assessment together. It became painfully obvious that Angela was very experienced with weights and was a whole lot stronger then I was. The personal trainer was obviously concerned about my lack of experience and gave me a yoga ball and 5 pound weights to work with, meanwhile Angela was pumping iron. This gave me another reason to hate the gym even more. I am not coordinated, I don't like others watching me when I exercise, and I don't like being new at something.
So instead of of trying to follow the personal trainer's stick figure training program, I started taking the classes offered at the gym. I found out how out of shape I actually was, and in many instances felt like I was going to throw up. But then something happened during my "ride" class. It was a twist of fate (actually I thought it was a God thing). The instructor in the ride class said she had an extra spot in her HIT (high instensity training) class. One has to understand that this class is very sought after and it's not very often that a space comes up, so I jumped at the opportunity. My first class was awkward. I became painfully aware how weak my muscles were and how uncordinated I was. The instructor, Jody, was so encouraging. Somehow I managed to to weasle my way into regular classes, ( I actually wonder if I was that pathetic or if it was my look of desperation) and I have now been doing the HIT classes for a month. It is the first time in years that I have stuck to a regular workout regime and have seen some great results (I am slowly becoming stronger and a bit more cordinated. I started the class being 15 pounds down from my 40th birthday. Interestingly enough . . . and this is what I want to reinforce to you, my biggest loser friends. My size in clothes did not change with the 15 pound weight loss. (the lulu hoodies were all still the same size), but now that I have changed the way I exercise, my clothes are much looser, especially my shirts.
SO what I am trying to get at to all my friends who are involved with the biggest loser. (It's a work thing). It is a long, slow battle. Don't be discouraged if you aren't seeing results on the scale, but be proud of yourself that you are taking steps to make yourself healthier. In our automated world we don't know how to be patient. We expect results quickly but what we have to come to terms with is the metabolism of a human body. It's not something that can easily be changed especially at the tender age of 40. Just be patient, and slowly make little changes in your life. Continue to be active, incorporate exercise in your daily routine, and keep track of what you eat. Don't be discouraged and don't give up.
Give A Shout Out to Megan Barron. Click HERE for her blog.
Megan has the same type of EB as Kourtney. She just graduated from Duke University, and just recently started her own blog. This young lady has been an inspiration to our family. She has received a lot of publicity for her post about "public prayers". Just so you understand what she is saying is not overstated. Kourtney has had this happen on many occasions and I think Megan does a phenomenal job expressing how it makes not only herself feel but everyone else who has been in the "prayer sandwich".
