Spring 2024 journal 

I am unique

That was one the things that I heard when I want in for feeding tube surgery.  I was apparently a challenge. My organs were not where they were supposed to be.  

I came back to this idea after attending an ALS support group meeting.  My limbs are not yet involved.  The weakness in the my right leg is probably do to the CP "getting worse" when confronted with ALS.  My limbs are not involved. We don't know when they will become involved.  I need to continue to walk and be as upright as I can, given the pretty severe scoliosis.  I am unique. I am special.  

I am powerless over my body and my life is unmanageable

One of the things about me is that I am a 27 year veteran of overeaters anonymous.  So the 12 steps are very much a part of my soul. I can apply the steps to anything.  Step 1 I am powerlss. Step  2 I believe in a power greater than myself that can help me. Step 3 I surrender.  

So dealing with a terminal disease that is ripping me apart??

Surrender myself to God.  It's that simple.  Believe deeply that God has got my back.  Keep showing up and doing the best I can.    

This is simple but not easy.  I hope to master it eventuallyl

It's okay to cry, as long as I don't stay there. 

The other day I had a fit of hysterics.  It was okay. my husband was there to hold me.  I acknowledged that what we are going through hurts.  My first response was simply to accept.  It's okay to cry.  As I think about that episode it was about frustrations, in terms of feeding myself.  That crises has passed.  

Which brings  to the second stage of this comment.  It's okay to howl.  Now start problem solving. Regardless of  what the problem is.  There will be a solutiion. 

Distractions 5/6/24

I feel like it's been a couple of weeks since I have done much writing. I want to begin my being open and honest about the distractions that have been pulling me apart. Not making excuses, but rather trying to wake up and begin where I am at.

First I am FMLA leave effective May 1. This was perfect timing. On April 27 my husband and I went to the local ER because I had a bad cough. What has happened is the right side of my lungs has partially collapsed. Later that week I was seen by a pulmonologist who specializes in ALS. He sent me home with enough exercises that it feels like a part time job.

Second. I am on a feeding tube. The program that I was given by dietician has so much fluid in it, particularly early in the day that I am constantly going to the bathroom. Also feeding is a messy business, particularly with a tremor, that sometimes I have to go change.

The drool. This was one of the early symptoms of ALS that was misdiagnosed for a long time. Until Summer 2023 I was swallowing my saliva automatically. That stopped early on in the journey. I keep a towel with me.

People. My beloved went to Boston for work and we arranged to have my Sister come and stay with me. She is available to do the relatively small number of things that I now cannot do. Having her here has been amazing. However, people are a distraction. He will be on his way home shortly. I will be delighted to see him, however he can be a distraction.

I think I have been wandering in dark places, and picking up books I read as a child for comfort. Living with ALS is not easy. It's hard not be frightened by problems that I have had for a long time that have been magnified by the ALS.

Be careful what you ask for.

There is a part of my soul that is not unhappy with permission to write full time. I need to put down the play things and really dive into what is possible. Take it vey seriously because this whole exercise says that time is short. Whatever time I have left I am sure I will have more to say. I'm really asking God to preserve my hands as long as possible. Only God knows what the future holds.

I also need to remember that I work for Jesus. Always have. Always will. I really need to start thinking more carefully about how I spend my time.

A Terminal disease

I have what is called bulbar onset ALS.  That means that the first muscles be attached are the voice, and the swallowing.  I have benefited from a feeding tube and formula (which is covered by my insurance).  My grandfather had bulbar onset and probllably died relatively quickly without these innovations. 

The next check was my lungs.  I am now working a significant home program to support my breathing and I have been prescribed for.

The best I can describe ALS is muscles are being attacked.  What muscles and when is a great mystery They don’t know when or if my hands will become a problem or my limbs will become a problem.  What you see in me, in terms of mobility is 2 things.  Some pretty severe scoliosis.  Also I was born with cerebral palsy. The fact that my right foot is now frozen is probably do to the CP getting worse, in a toxic interaction with the ALS. 

So it’s a great mystery and is in God’s hands.  I could hang out for quite a long time just as I am.  I am on a prescription medication that has been shown to slow this beastie down.

5/18/24 Doing the next right thing

I had a morning recently that I got up a scared mashup. I was in pain and I felt incredibly weak. As I moved through the morning I was given a gift. What was next thing that needed to be done? I kept my focus on the next right thing. An absolute laser focus on the task at hand.

That was a couple of days ago. Since that the pain and weakness have improved somewhat. The medical tests were all negative.

I got to thinking, this very much applies to ordinary days. I will start using this principle as consistently as I can.

Choose Life

Our parish lost a dear lady. D was a little cherub. The convener of the Ladies Luncheon. She was 97. Jesus came for her.

This reminded me very much of a conversation at my ALS clinic a couple of months ago. I have bulbar onset ALS. That means that my voice, and my ability to swallow are being attacked. I was assured that if I did not do a feeding tube, I would be dead in 6 months. Even now, just a couple months later, I cannot imagine trying to swallow enough "oral" food to keep me going. Since the mandate that I have heard is to not lose weight. Clearly even now plugging in and pouring formula in is necessary

Managing a feeding tube is a lot of work. My current pattern has me measuring out formula in batches. While I was doing that this morning, my husband was receiving and opening the next month of formula. In comes in cases that are stacked under our kitchen table. I will work my way steadily through that pile in the next month. I am in email contact with a nice lady at the specialty pharmacy that sends it out. The blessing is that because it is my only source of nutrition, it is completely covered by my insurance.

For a variety of reasons, I have decided to retire. However there is a lot of writing still left to do. The book project that I trying to work on in the midst of everything else actually showed up in my head as a symbol of the fact that I am not done.

Let me say that again. I am not done. So I do the work.

Messy

Many aspects of my life currently seem to make a daily mess of my clothing.  If I don't lay a towel down carefully there are little drips that happen when I am doing a feeding.  The Drool has become constant. I believe the paralysis of my lips has increased. If I don't catch in time it leaves little tracks down my front. 

I think this brings up issues of ego and self esteem.  I think I need to redouble my work on acceptance.  Certainly none of the issues is either surprising or unexpected with my diagnosis.  Acceptance is a big piece of getting through life. Acceptance and trusting God completely, that must be my motto.

5/28/24