It certainly has been a long time since I’ve made any sort of update on here. There’s been so much going on and it can be overwhelming. One of my last posts discussed my GI system and what is going on with it. I sort of left things hanging, didn’t I?
Well, there is a bit of a reason for it. The surgeon I was seeing at the time had one of the worst bedside manners I have ever encountered and often left his office in tears. I did end up seeking out a second opinion and here’s were I’m at. My GI symptoms have been getting worse. The pain in my abdomen used to only come after I’ve eaten, now it’s there all the time and will get worse when I eat and randomly throughout the day. Sometimes nighttime can be the worst. The bloating is incredible and I can go from having my jeans be big in the morning to not being able to get them closed at night. Close have become so physically uncomfortable that I prefer to stay in pajamas. My diet sucks. I’m still on soft foods and mostly liquids. There are very few things that I can eat that give me minimal discomfort. I’m nauseous a good portion of the time and don’t even want to think about food. I need nutrition, though. So here’s my day in food for the most part. In the morning I have something like a Gerber’s Grabber. Yep, that’s right. Baby food. It’s the only way I can get fruit in. Hey, when you’re this sick you have to get creative and improvise. So, that’s breakfast. Mid-day, I make my own protein milkshake that actually comes out quite yummy! I mix a cup of almond milk, with a scoop of whey protein (chocolate), 1-2 tbsp of cocoa, 1tsp of something called “veggie magma” which is a powder and pretty much how I get any veggies, 1 packet of splenda, a banana, and a bunch of ice. Toss it in a blender and it gets really frothy and velvety. I let it go a bit longer than it needs to because it builds up in volume almost an extra 1/3 of what’s in there! For dinner, I will usually have a gluten-free english muffin with almond butter and some nutella (there are something I refuse to give up). I used to be able to tolerate a 1/2 cup of low fat ice cream, but now I’m having too much pain for even that. I may give sorbet or coconut milk ice cream another try. During the day I’ll have a snack of a rice cake with some almond butter, or a yogurt. I just bought a giant bag of Dum Dums to have something for flavor throughout the day. Depending on how I am feeling each day there is some variation and I may be feeling a little more adventurous.
In a few weeks, I am seeing one of the countries’ top GI motility specialists. I have been waiting for this appointment for a long time. I’ve had a few tests* that he ordered already and hopefully they will give us the answers we need to figure out what to do next. Whether it means surgery and what kind of surgery, or if there is an alternative that previous doctors haven’t thought about. All I know is that I can’t keep going on like this.
See, last summer I was actually doing really well! I had managed to get my butt out of the wheelchair and started walking. Part of that had to do with getting adequate pain control. I started of really small and by September I was walking close to a mile! I felt amazing! I was still struggling with my GI system, but this gave me something to focus on. It was short lived, sadly, because as the pain kept getting worse and I was getting about the same amount of nutrition as I am now so my energy started to drain. My limbs feel heavy, I’m so tired all the time, I’m not sleeping well because of the amount of pain I’m in whether it be from general joint/EDS pain from subluxations and dislocations or from my abdomen, and my hair is falling out again. Each day I pull out fistfuls of hair. Thank goodness I have a lot of hair, but it’s still very upsetting. The last time my hair was falling out was when I struggled with Anorexia.
*One of the tests is actually really cool. It’s called a Smart Pill Study and the REALLY cool thing is that the motility specialist I am seeing is one of the researchers associated with The Smart Pill!! Basically, the Smart Pill measures the transit time of the entire GI tract. You swallow an electronic capsule and it transmits information to a recorder that you carry with you and hit a button every time you eat, use the bathroom, etc., then bring the recorder back after 5 days and the dr will download and review the information.