Friday, June 2, 2017

Update

Adam and I went back to clinic yesterday. I was dreading this visit (does anyone look forward to going to an ALS clinic?) because I knew this would be the visit at which I needed to make a decision about a feeding tube. And it was.

I am getting a feeding tube. Soon. I just need to finalize some decisions about the surgeon, and then it will be scheduled. Another hole in my stomach. I will be able to eat regular food for pleasure, but this will help me supplement my calorie intake as the physical act of eating is tiring me out. All that fork lifting, sandwich holding, and chewing can really wipe a girl out! I lost four pounds since my last visit and though that is not too bad it could be the beginning of a trend. Funny how for the past twenty years I've wanted to lose some weight, and now it is important for me to keep it on.

We got to see a sample of a feeding tube. It's kind of long. One more thing to tuck into my pants and underwear! The nutritionist showed us how you would put food in.. A little intimidating but doable. Actually I am not doing, Adam is.  I feel for him. Just another "to do" to add to his list. It's a long list. Feel bad and guilty and wishing I could take things off his plate.

As much as I was dreading this visit and the discussion and decision around the "tube", I feel okay. Right now I am in "this is how it is" phase and the prospect of this step is not as daunting as I thought it would be. I am a woman with ALS who needs to get a feeding tube in order to maintain strength, good nutrition, and quality of life so I can continue to get out and kick ass. There. Done.

In other news, my breathing level remained stable. REALLY good news. My longevity correlates with breathing levels so we are very happy about this. Also why it is a good time to do the feeding tube procedure.

We had a long conversation with my doctor about Radicava. You might have heard that the FDA expedited the approval of a new drug to slow down the progression of ALS. After a very in depth discussion, my doctor, Adam, and I decided this medication is not for me. I am not going into the details here as to why (not sure I could do the explanation justice) so you'll have to trust me on this. It's okay. I'm really at peace with this decision.

We talked about some other things like my foot drop (what a pain in the foot!), getting something tray-like to hold my iPad for when I stop talking, what I can do when food is stuck between my mouth and gums (ew!), and the possibity of using a voice magnifier (?) especially when I am on the phone. All sorts of interesting things you would never know about unless you had ALS.

Late yesterday afternoon I went to my school's end of year party / retirement party for a fabulous teacher Linda Biondi. It was wonderful to see everyone and celebrate the accomplishments of an incredible friend and educator. At the end of the evening I spent some time talking to a young teacher and new friend whose Mom has been recently diagnosed with.ALS.  It was so apparent to me how much my friend loves her Mom. I was able to answer some questions, give some advice, and hopefully be a resource for this family as I am about six months ahead of them in diagnosis. Selfishly, I must admit, it felt good to help. I don't get to do much of that lately, and if anything - ANYTHING. - good can come out of this journey, I will take it.

Please continue to live to love, and love to live. I know I will.

2 comments:

  1. Glad you made the feeding tube decision....as difficult as that likely was for you....as it's another "step"......I love how you see the positive in it helping to keep your nutrition and strength up! Glad you got to go to the dinner...and be a support/resource!!! ❤️

    ReplyDelete
  2. I read your blogs and almost every single time end with the thought, "Could I be this strong?". I just think you're amazing. I appreciate hearing every nuance to your journey.
    There are so many things I wouldn't have thought of that you have to consider. While I've known three people personally who had ALS I've learned so much more from your blog than I ever knew about them. Thank you.

    ReplyDelete