Really. I don’t think there is much else to say.
Several years ago a friend told me about a camp in California, where his daughter was working for the summer. He contacted me because he was excited to tell me that they devote an entire week to Prader Willi Syndrome. Knowing it was a pipe-dream to think I could get myself and Katie to California, I hit the internet instead. A year ago I found Wonderland, Wonderland Camp in Rocky Mount, Missouri. Week long camps for people with “special needs” are held throughout the summer, but one week is specifically for people with Prader-Willi Syndrome. I was so excited. I signed her up for camp and researched nearby resort options for me. My goal was to find an affordable room at a place with a decent pool. I made price the first priority and found a place with a decent price and pool, but realized that my room would be located above the resort bar and that the large resort had continuous activities planned, it sort of reminded me of a KOA campground only with buildings instead of campsites. I was looking for a much more peaceful, serene environment, like a state park campground; my main goal was to pamper myself, swim, and sleep. I found another place that looked like it would fit my requirements, when I spoke with the proprietor she confirmed that if I wanted a lot of activity I was looking at the wrong resort, I immediately booked my reservation. It was a wonderfully relaxing five days. I slept. I swam. I got rejuvenated. I vowed to do this every year.
This year I made Katie’s camp reservation and called my resort. They booked me in the same room and I sent my deposit. I started selling scarves, jewelry, and cards to provide the means of getting us to Missouri. We saved our Christmas and birthday monetary gifts and, with the help of family and friends, we scraped together enough to cover her week and mine.
For those of you new to our life, you need to know that PWS is a condition that requires diligent twenty-four hour supervision and monitoring of food, as people with it are constantly ….that means, ALWAYS and FOREVER hungry. This is why the camp has them come on a seperate week, so they can cater to the specific dietary restrictions that are necessary. This is also why….. I need a break!
One would think that with constantly dealing with what to eat when, that food would be the furthest thing from my mind when I am not with Katie. I thought that would be the case, and was surprised when I realized that it is so ingrained in my being that before the trip I thought, “Where are the grocery stores? What should be my menu for the week? What staples should I take with me?” I told myself to stop thinking about the food, it was going to be irrelevant for an entire week. I could eat whenever I chose. I could…..gracious sakes!!!…… skip a meal if I wanted! I could have breakfast at 4:30am (yeah, like that would ever happen!) and lunch at 2 pm without anyone noticing the time span. I could have a sandwich and call that a meal without adding cucumbers, tomatoes, peppers, onions, radishes, and every other conceivable vegetable known to man.
So, what do I do? I still think about food. My first blog post about my vacation could have described the serenity of no obligations, the peacefulness of no responsibilities, the wonder and majesty of a lake made by damning a couple of rivers……but, no. Staying true to myself, it is about food. Some of my food interest is not related to Katie, some of it comes from my ancestry of German farmers who still battle over who makes the best German Potato Salad at a picnic. The correct answer is, “mine”. It doesn’t matter who you are talking to, if they made German Potato Salad and you asked if they tried the others and whose was the best, the answer will be, “mine”. Just to clarify, I must tell you that mine is the best! As a young mother I canned fruits, tomatoes and homemade jams until PWS entered our lives and I didn’t know how to make those sugar-free. I think it is a benefit that I am passionate about food, cooking, and learning new things. That passion has helped make me adventurous in the kitchen so I could create interesting low calorie, low fat, low carb, high volume meals. The unfortunate part about my food passion is that I like to eat it all. I have a distinct memory of being told what Prader-Willi Syndrome was. In that moment I thought, ” it is such a bizarre condition that I doubt people will believe it is real when I tell them about it, they will think I made it up as an excuse for obesity”. At that time I weighed probably 140 pounds or less but decided then that I would not let myself gain weight, because I didn’t want people to think that Katie was obese because her mother is and it is simply our lifestyle choice. It grieves me that I was not diligent about that. There are far too many psychological theories that factor into my obesity for me to bore you with that line of thought, but I am glad that PWS is getting more awareness which makes me sound less of a looney tune and more legitimate than I sounded in her early years. My legitimacy is certainly not the main reason I am happy about the awareness, merely a by-product.
I dropped Katie and the twins off at camp, checked into my room and went grocery shopping, I went to two stores so that I could find the kind of coffee I was looking for. I stocked my fridge and have eaten without regard to a clock. What would be in your fridge if you could eat whatever you choose?
Yes, that is a lot of cheese, but it was a good sale, I can take it home. The margaritas are in there because I was anticipating a guest, I thoroughly enjoy margaritas, but the tequila puts me immediately to sleep…….or makes my clothes fall off…..or both!
I am greedy and have not shared my lovely meal, the critters are not happy with this turn of events.
Before me sat a cup of steaming Gevalia decaf with a touch of honey and cream; crunchy, seedy toast topped with Michelle‘s sweet red-raspberry jam; plump, chilly black grapes, and a piping hot omelette made with spinach, portobello mushrooms, vidalia onion, red pepper, bacon, ricotta and cheddar cheeses. I sat in my swimsuit and sarong, (because why would I wear anything other than that?) decided that I needed to scootch just a little bit in another direction to optimize my lake view…..scootching is NOT reccomended in plastic lawn chairs!! As I attempted this, two chair legs folded underneath and catapulted me off of the seat. Did you see “Identity Theif”? Remember the part where Melissa McCarthy gets hit by the car? She is hurled over the hood, against the windshield, onto the concrete and everyone thinks she is dead……yeah, that was me after being launched from the chair! I rolled, yes, actually rolled multiple times before landing sprawled on the deck with my sarong wrapped haphazardly around me. I untangled myself, gingerly arose to a sitting, then kneeling, then standing (only with the support of the nearby A/C unit) position. I hobbled over to pick up my upturned chair while thinking, “Oh, crud, I have to tell the proprietors that I broke their chair!”, as I upended it I realized it wasn’t broken, after all. I am currently seated in the wretched thing, the legs had merely folded under. My lumbar region is not happy about the incident, as I was already living on an injury from last week, but….on the bright side, the nearby squirrels were too busy chattering and giggling about my predicament to pilfer my food!
Thursday, March 13 was that moment.
Katie and I sat nervously in the office of the endocrinologist. She had just been weighed, so she was quite disappointed and disgruntled before trying to pull herself up and onto the exam table. That is never an easy feat. She tried to step onto the narrow shelf that pretends to be a step stool to the table. Facing the table, she lifted one foot onto the step, lost her balance, grabbed hold of the table and tried to turn around to plop her behind on the table, but was unwilling to move either of her feet. I had her step down, turn around, hold onto me and lift her foot up behind her to step onto the step so she could then, just sit down. I imagine reading all of that was as tedious for you as living through it is for me. This is a routine we do with each appointment. Finally, she was situated, I settled into a chair next to the exam table and coached Katie to look at the doctor when he speaks to her and to answer his questions. Usually she sits and cries. Which is understandable. Every time we leave the office I feel as if I am the most incompetent mother to have ever walked the planet. Endocrinology appointments are not our favorite thing. Our exercise log is accepted with extreme skepticism, her blood sugars are way out of control, and we feel like there is nothing we do that is right.
March 13th changed all of that.
When the exam room door opened a doctor we had never seen before entered the room, introduced himself and by his actions and words it was obvious that he had already studied Katie’s case. He reviewed her A1C levels and smilingly told us that he was pleased that they had remained so steady, that it was much lower than when she was referred to them. There was no change in the number that day than the previous three visits, but the attitude of the two different doctors was like night and day. I wanted to bow down and kiss the man’s feet at that moment, not only for not berating us, but for praising us, which was a first. He looked at her exercise record and said she was doing a great job at being active. Then the moment came. The moment that quite possibly made everything change. His next words were.
“You are doing everything you can do, what needs to be done is to take off some of the weight, but the Prader-Willi complicates it all, I think I can help with that. I would like to try, if you are willing, some different medications, we will keep her on her insulin and start her on a pill and a weekly injection, her blood sugars should improve, we will be able to lower her insulin and get her off of some of the insulin eventually. Maybe by the end of the year she will need no more insulin. The injection given once a week is Bydureon, some people find that there is a decrease in appetite with it, with the Prader-Willi we don’t know what the effect will be.”
My mind: WHAT!!!!????? A decrease in appetite!? gulp, puke, sob, sob, sob, CAN THIS BE POSSIBLE?! don’t fall apart Anne—ask rational questions!
Me: Is that like Byetta? I have read about Byetta’s possible effects on appetite with Prader-Willi.
Dr.: Yes, the same family of, it is a weekly form of exenatide.
Me: Yes, we would love to try it.
My mind: sorry, mind went blank here, swirling with the enormity of the possibility of the radical changes this could mean for her.
NO HUNGER! What a wild thought. No grinding of her teeth all night long as she dreams she is eating, no sneaking cheese or pancakes or pizza into her pocket when I blink, NO HUNGER……or even the idea of decreased hunger would be acceptable and welcome. Acceptable and welcome, what a silly phrase for me to use when basically my entire being is shouting, “Oh my God, Praise the Lord, let this really work, Yes, Yes, Yes!!! ”
We listened to the instructions, I made sure much of it was written down, I knew my reeling brain was not absorbing anything other than the possibility of decreased hunger.
We walked out of the office giggling with delight.
As we drove home I told Katie that she needed to really work out and keep good records of food intake, insulin amounts, and blood sugars. I also stated that it will be interesting to know if she feels any different when she is on the new medicine. I told her to let me know if she feels anything different.
Here’s a thought.
If a person has never had the feeling of satiety, will one know what it is if it happens? If one has not experienced something before how do you know it, recognize it for what it is if it does happen?
Here’s the condensed nutshell, please read the attached links to have your mind completely blown, but the basic nutshell is this, a doctor found out that the spit of Gila Monsters affects blood sugar. Some other people found out that injecting this into folks with PWS showed a decrease in their appetite. Now, you and I would think that news should automatically be shouted from the mountaintops, but scientific types thought that the study was too limited to have any real worth. Fortunately, other people are continuing to study this and more fortunately there is a doctor in Rock Island, Illinois who knows all these things and has possibly changed our lives forever.
For weeks I found myself weeping at random moments at the thought of what this could mean for Katie’s life, for my life, for the lives of everyone, everywhere affected by PWS. I tried to tell people who deserved to know the excitement. People who always, sincerely inquire after her well-being. People who love her. Mostly, all I could do was bawl, I would start out by telling them I had news about Katie, then I would break down. I probably scared the crap out of them. Some I never even told, because the enormity was simply too overwhelming. For those of you to whom I said, “wait until my next blog post”. This is the post you have been waiting for. Read it and weep!
Here is an aside to all PWS parents. I want you to know some of the things these people said to me. To let you know that there truly are people who “get it”.
*This is HUGE!
*I can’t even imagine the changes this will make in your lives.
*sob-she won’t be hungry?-sob-sob-sob
*oh, Anne -hug
* Monster to the rescue…Does that mean there are now gila monster farms, like chicken farms? (I know, not quite showing the enormity, but shows that a sense of humor has always been appreciated by me.)
*I’m very happy for you. And hopeful.
My utmost respect and gratitude goes out to the Gila Monster, Dr. John Eng, and Dr. Rameshkumar Raman.
CAVEAT: This might not prove to be the total solution, but the fact that this discovery has been made certainly gives me hope that more and greater discoveries are on the horizon.
~”It really is a beautiful lizard,” Eng said. “Like many other animal species it is under pressure from development and other environmental concerns. “The question is, what other animal has something to teach us that can be of future value? And plants, too? We will never know their value if they are gone.”