Sunday, November 13, 2016

This week...

I can no longer push my manual wheelchair by myself.
I ordered a power wheelchair.  It isn't a regular power wheelchair, but one that is specialized to my upcoming needs.  It tilts back, and has a head rest.  Hopefully the insurance company will approve and pay for the component that raises me up and down.  It will take three months.

I can no longer walk up and down the steps without supervision.
We ordered a stair lift.  I will be able to sit in the chair and it will bring me up and down the stairs.  I am going to need to remind Ean that this isn't a toy.  I will be able to use it until I have no more strength in my core to sit upright by myself.  Then I will have to set up a bed downstairs.

I can no longer brush my teeth using a regular toothbrush.
I was given a grip to hold my toothbrush or I can get an electric one.

I can no longer do active stretching.
I now have to do passive stretching which means Adam or my Mom, or whomever else I can get on board, needs to stretch my legs, feet, hands, and arms for me using a series of set exercises.  I am not to use my muscles.  I need to conserve strength.

I went to the ALS clinic this week:
I met with my neurologist (love her!) and we spoke about all sorts of things.  Weakness, eating chocolate, new meds, how the older meds are working, blood work, what it will feel like when I start losing my respiratory control, whether or not I should have the last part of my gastrointestinal surgery (leaning toward yes). This is where I learned no more steps without supervision.  The one thing she couldn't tell me is how my disease will progress and how long I have to live.  I asked the question but she couldn't tell me.  Do I really want to know? Yes. Today I say yes.  On Thursday I wanted to know. Other days I don't.  It doesn't really matter. There is no way to know.

I met with the research nurse.  (Is that what she was called?)  We talked about the availability of drug trials, the best way to get on them, how not having a colon might deter me from getting on one, that there is one coming up in February/March that I might be a candidate for, the ones in Israel are full, how to apply for stem cell research trials.  She was extremely helpful.

I met with the physical therapist and occupational therapist. They did some evaluations.  Most telling for me was how little control I have of my core muscles.  We spoke about how to make accommodations for the disabilities I have now and how to accommodate for the ones coming up. This is where I learned about no more pushing the wheelchair.  They showed me a variety of gadgets. I took home tubing to put on a pen, a fork.  I am pretty close to needing those.  I took home something to help me open and close buttons on my clothing.  Don't need that yet.  I took home elastic shoe laces.  Maybe.  We talked about the lack of circulation in my feet (from sitting too much but that can't be helped).  We talked about how I am coming to the point where I don't really need to wear my MOFO (right foot brace) much longer because I am doing a very limited amount of walking, but for right now it is still okay.

After the appointment Adam, my parents, and I went to lunch. We talked about the overwhelming sadness I feel because this day a little more of my independence was taken away. I like doing things by myself. There are an enormous amount of things that I like doing that I can't do anymore.  This makes me sad.  And I cried about it.  I cried that day, and that night, and I probably will continue to cry about it.

On November 19th I am scheduled to go to my first ALS support group.  I think I want to go.  I am going.  I am a little afraid.  I am going to meets PALS (people with ALS)  who are farther along in the disease than I am.  Will that scare and depress me?  Will it inspire me to keep moving forward, or push me back?  Will it be helpful to meet with people who are going through the same thing I am going through?  I think it will.  I am going.

This week I started praying.  Everyday.  I didn't used to do that. Not really for me, but for my kids.  I want them to have strength and be okay.  I want them to live normal lives and do normal things and be happy. This week has been hard for them.  They are scared about the climate we live in.  They have a mother who is ill. I have always fought for them.  I might not be around to continue to fight for them.  They have a father and a large extended family and a beautiful village that will fight for them.  And I hope all my lessons that I have taught them are ingrained in them and they are ready to fight for themselves.

This week a friend brought me holy water.  I keep looking at it, touching the container.  In complete disbelief that he would give me his holy water.

This week I mourned the loss of two amazing women. Honored to have known them.

Today I will see friends that I haven't seen in a very long time.  I yearn for the familiarity of comfortable relationships.




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