ALS with Anna Vol. 2

Monday starts a new stage of our journey. I said from day one I would not be put on a vent or get a feeding tube. Well I did research and read others testimonials about feeding tubes. I learned about many reasons for getting a feeding tube I had not thought of. First thing you need to know is ALS effects your muscles. I talk about this in more detail in Vol 1 of my blog,. Here is the cliff notes version. The neurons in your brain stop sending messages to the muscles. These messages tell you muscles what to do and how to move. For example, picking up your hand to type out a text, or to rub your nose. Once those neurons stop functioning correctly your brain believes that muscles are defective or damage and stop working.

The reality is you really don’t realize how many muscles you have until they stop working. We all know, without thinking about it, that we use our muscles to move. Some of may know that our breathing is controlled by muscles. Our tongue is a muscle. However, our voice and our ability to swallow is controlled by muscles as well. Our body is one big moving muscle. The one thing I didn’t consider, when I said no to a feeding tube, was how am I going to take the medication I need when I can no longer swallow. I came to this realization when doing my research, and that is what started the shift in my opinion of a feeding tube.

Now, I can still eat. I do have to be selective in what I eat and how I eat. I blend some of my foods, and surprisingly they still taste the same. Some of the foods we blend actually taste better blended. They taste stronger, more flavorful. I still love to eat, and have become creative in how I eat certain foods.

For example, I love Hamburgers. I have became creative and come up with way to still eat the things I enjoy. However, with hamburgers I can’t eat bread, it gets stuck to the roof of my mouth. So I do “Hamburger in a Bowl” as I call it. If you want my recipe I will include it at end. I have learned to turn most anything I want to eat into a “bowl” so I can eat it. I love sushi in a bowl too! I still enjoy Chick-fil-A. I can eat their chicken strips, because they are very soft and juicy. I have to put lots of sauces on my foods: mayo, ketchup, yum-yum, ranch, etc, to make food easier to swallow. Think about swallowing like a water slide. What would happen if you went down with no water? You would get stuck and probably get a few raw places too. So I use sauce to help me get the food down. Thank God I like mayo. I can’t do many hot or spicy foods any more, but I still love them. I just have to do it in moderation and lower spice levels. I still eat wimpy hot wings from Zaxby’s, my favorite, and spicy sushi rolls. I just have to be careful. The spice can cause me to have a coughing fit, like when you swallow wrong.

I say all that to let you know I can and do still eat. It just looks a little different and it takes me twice as long to eat. BUT! Your girl can still put the food away.

However it is very difficult to swallow medication and to drink enough to keep myself properly hydrated. I am getting enough to drink during the day. I also find eating to be a chore sometimes, and I find myself not hungry. When I’m not hungry or can’t think of anything I want to eat I cannot force myself to eat. I physically cannot do it, I’ve tried. So all of the above reasons and explanations is why on Monday March 11th I will be going to Mayo in Jacksonville to get a feeding tube.

Please keep me and my family in your thoughts and prayers. This will be especially hard on Jason and Dalton. Dalton has anxiety wherever we leave. Plus he knows what is going on. He doesn’t have the luxury of his younger brothers who are too young to grasp the reality of what is really happening. I am honest with Dalton and I tell him as much as he wants to know. Most of the time it is the bare essentials and that is fine. So please keep us in your prayers.

~God has a plan and I have a purpose~

ALS with Anna

Hamburger in a Bowl

1 lb ground beef Browned- season as you would a hamburger. For me it is “Worcestershire, onion powder, roasted garlic powder, Smoke House Maple”. I make sure to chop my ground beef up very fine. I don’t like big chunks. Then I drain it.

While it is draining I get a my toppings and condiments ready. I prefer bread and butter pickles diced up, taste much better than relish. Onions diced, crispy/crunchy iceberg lettuce, avocado, and Mayo. You could also add bacon, egg, or any other of favorite condiments or toppings.

Then I get a bowl and spoon in the amount of of meat I want. Then I add my toppings and condiments of choice. Then I mix it all together. I eat it right out of the bowl with a spoon. You could use lettuce leaf to eat it also. Enjoy!