When I started this blog in 2013, newly diagnosed, I resolved to live each day joyfully. In doing that, I would be strong and face this disease with grace. Now, as my condition worsens day to day, and I feel weaker, I either have to admit I'm not strong, which is the core of my being, or not get the emotional and physical help I need desperately.
I don't want to prolong this existence. Having to ask for food, drink, range of motion exercises, to get out of bed, dressed, all the things that everyone else I know takes for granted, doesn't make me ask "why me?" but does raise the question "how long?"
I feel weak putting this dilemma in writing, but I have to put it out there so people understand I am no longer the strong person I purported to be. Definitely on the horns of my dilemma. Admit weakness and lose more of my sense of self than I already have, or not admit it and lose the help I need.
Obviously, once again in my life, pride goeth before a fall.
You'd think I would've figured it out by now!!
Saturday, January 30, 2016
Monday, January 11, 2016
Post ALS Clinic
It's Monday morning, the start of my second week of retirement. Last Monday I went in to the office, though, so this feels like the real thing. In bed, reading, listening to NHPR because it has all the talk-news versus YPR that goes to music from 9-12.
Enjoyed meeting the doctors and other ALS Clinic staff at Billings Clinic. Unfortunately, I performed poorly on my respiratory tests. 65% in October; 44% in January. So their recommendations are a Trilogy for help breathing, and a PEG tube for supplemental nutrition. While those aren't considered big deals to get, I am facing the downhill slide. I truly can't envision being in this or worse condition for another year.
I watched Paul take down the Christmas tree yesterday. Will I see another? Of course, none of us know the answer to that question for ourselves. Thus, we just live each day, and try to be thankful for all we have been given. Still, that question was placed in front of me when I got my diagnosis, and it tends to be helpful to make me think deeply on events and activities that I experience, as I truly don't know when it will be the last time.
I can look at this new piece to help me feel happy.
The profusion of color is important to me given the weather and difficulty going outside. I love going outside, even now in the cold, but I am reluctant to ask for the time-consuming and trying effort of getting range of motion exercises done, getting me out of bed, fed, dressed, put in outerwear, shovel snow off my ramp, and enough blankets to keep me warm. All that has to be done by a family member, and my independent decisions about desired activities are completely reliant on them being willing and able to enact the needed preparation. So I more often stay in pajamas and read or watch Netflix.
That is still a pretty darned good life, though, when I think of how millions of people live in poverty, fear, hunger, pain, destruction or any of the other ills brought on by Man's inhumanity. I have ALS? Sure, it's a disease, and it changed my life completely, but people die from this and other causes and diseases all the time. Aneurysms, heart attacks, cancer...the list is long. As for me, I am always going to remind myself how lucky I truly am.
Enjoyed meeting the doctors and other ALS Clinic staff at Billings Clinic. Unfortunately, I performed poorly on my respiratory tests. 65% in October; 44% in January. So their recommendations are a Trilogy for help breathing, and a PEG tube for supplemental nutrition. While those aren't considered big deals to get, I am facing the downhill slide. I truly can't envision being in this or worse condition for another year.
I watched Paul take down the Christmas tree yesterday. Will I see another? Of course, none of us know the answer to that question for ourselves. Thus, we just live each day, and try to be thankful for all we have been given. Still, that question was placed in front of me when I got my diagnosis, and it tends to be helpful to make me think deeply on events and activities that I experience, as I truly don't know when it will be the last time.
I can look at this new piece to help me feel happy.
The profusion of color is important to me given the weather and difficulty going outside. I love going outside, even now in the cold, but I am reluctant to ask for the time-consuming and trying effort of getting range of motion exercises done, getting me out of bed, fed, dressed, put in outerwear, shovel snow off my ramp, and enough blankets to keep me warm. All that has to be done by a family member, and my independent decisions about desired activities are completely reliant on them being willing and able to enact the needed preparation. So I more often stay in pajamas and read or watch Netflix.
That is still a pretty darned good life, though, when I think of how millions of people live in poverty, fear, hunger, pain, destruction or any of the other ills brought on by Man's inhumanity. I have ALS? Sure, it's a disease, and it changed my life completely, but people die from this and other causes and diseases all the time. Aneurysms, heart attacks, cancer...the list is long. As for me, I am always going to remind myself how lucky I truly am.
Tuesday, January 5, 2016
The New Year begins...
The year began with fireworks viewed through my glass door. Quite beautiful as they lit up the carved glass. I may have voted against fireworks inside the city limits as a council member, but I sure do love them! Very glad our neighbors do too!
We also went to a wedding on the 1st. So the new year started with love.💕
But the next day my wonderful boss lost his beloved (by all) wife to cancer. She was 57. Right around Christmas two other 50-something women died unexpectedly. Death comes in threes, I grew up hearing. Whereas the latter two did not get a chance to say goodbye, Kathy thankfully did. She leaves twin girls in Caroline's class, and two adult children. How can I ever feel my situation is unfair, when these women all are gone and leave loving families too. I just have to cherish my loved ones and prepare them for the inevitable.
Speaking of that, Paul and I talked about what level of invasive medical intervention I would want to have. I'm ready to go anytime (there will always be something else to live for, after all). I don't want it to be too uncomfortable at the end, but I'd like to be aware. Are those things mutually exclusive?
So far, I use a wheelchair and have a catheter. That is the sum total of medical intervention. I am proud of that. Things may change when I go to the ALS clinic in Billings.
We also went to a wedding on the 1st. So the new year started with love.💕
But the next day my wonderful boss lost his beloved (by all) wife to cancer. She was 57. Right around Christmas two other 50-something women died unexpectedly. Death comes in threes, I grew up hearing. Whereas the latter two did not get a chance to say goodbye, Kathy thankfully did. She leaves twin girls in Caroline's class, and two adult children. How can I ever feel my situation is unfair, when these women all are gone and leave loving families too. I just have to cherish my loved ones and prepare them for the inevitable.
Speaking of that, Paul and I talked about what level of invasive medical intervention I would want to have. I'm ready to go anytime (there will always be something else to live for, after all). I don't want it to be too uncomfortable at the end, but I'd like to be aware. Are those things mutually exclusive?
So far, I use a wheelchair and have a catheter. That is the sum total of medical intervention. I am proud of that. Things may change when I go to the ALS clinic in Billings.
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