It could always be worse seems to be a common phrase when dealing with the progression of my FA lately. I try to stay calm and not frustrated or angry, but that is not always the easiest. Screaming into my pillow or punching it has been some ways for me to release some of that anger I feel. For about 5 years I have not been able to turn myself at night and it is the most frustrating thing to have to holler at my dad (or anyone who has helped but mostly it has been my dad) and wake him up. I have to always remind myself to reset or reboot my mind just like you do when you reboot your computer by clicking the Ctrl-Alt-Del button or when you turn it completely off to give it a fresh start. Trying to make my mind think of things in a more positive way and to get those negative thoughts out as they do not belong! Give it a try? It really seems to work for me! It could always be worse!!
When Anyone turns 40 (in my case that was 8 years ago, eeck) things start going south. It does not discriminate, and it does not matter what part of the body, can I get an AMEN! That is really when my progression seemed to start taking over. I have never wanted to be the Debbie downer with FA. Writing has always been very therapeutic for me and sometimes that means mentioning the not so good things. When I mention the not so good things hoping to back it up with something good, because it could always be worse!!
SEE NO EVIL
Sometime around the beginning of my 40s I was having a really hard time with my focus, blurry vision and seeing spots! I realize that these 3 things were side effects of 1 of my heart rhythm meds (I have checked this out and while the medicine is working really good I do not want to fix what is not broken. I have already been down that road. My cardiologist agrees.). It could also be grouped with my diabetes, and my FA (not a doctor but it would not surprise me). This is still happening and sometimes is worse than others. It could always be worse!At least I can still see!!
I go to see my optometrist every year for a checkup as that is what you do when you get older, and get diabetes (at 40), ugh!At 43 I started wearing readers, ugh! Around this time he informed me that I have Optic atrophy. Basically, I see in a tunnel with no peripheral vision. There is nothing that can be done about it and yes it is progressing, ugh. Every year the optometrist does a test to make sure the optic atrophy has not gotten worse. These past several years has not shown any more progression which is a blessing! My vision has closed in to 40 % and a regular (define regular, HA ) person has a optic vision of 90%. It could always be worse, at least I can still see!. I am now needing help reading and editing from my caregiver Christina to figure out what in the world I am trying to say! It is so frustrating, however on the other side of that I am so thankful for Christina’s help!! This is just another time when I need to stop and tell myself that it could always be worse! I can still see!!
HEAR NO EVIL
Again, when I turned 40 my mother kept telling me how hard of hearing I was because they would have to turn up the TV for me too much. I was in denial and did nothing about it until June 2022. The hearing Dr. confirmed it that I was hard of hearing. In July I got the hearing aids below.I must admit that I was excited to get them thinking that I was going to be able to hear an ant fart on the moon, but not so much, ugh! I could hear better but it was incorporated with the crinkle of cheeto bags!! Going back to the hearing Dr. he was able to teach my dad (Christina was there looking on) how to use an app on his phone (everything has an app) to control the noise levels and how to turn off the Bluetooth as that would take away the crinkle! That was so much better!! Sometimes are better than others! It could always be worse, at least I can still hear!&/
I do not wear them when I am on the computer because wearing them with the readers on and my headset on it makes for a not so pleasant feeling! I am so grateful that when I do listen to things with my headset on (which is always) I can hear them fine! I listen to some podcasts, stuff on YouTube, or my Bible app. That is a huge blessing!!’ A friend of mine and Christina is working with me to try and get the read that feature Dragon and on Microsoft edge so grateful for their help! So many blessings!!
One last thing on the hearing is about a yr and 1/2 ago I got an Alexa! She helps me to be able to hear all my books on audible, my music, and podcasts. She can also turn on and off my lights at my TV. I can have her call somebody although I have not really looked into it. Sometimes she is finicky, or my voice is not project good enough so she acts like she is not hear!! She is just another huge blessing, and one that I am so grateful it it It could always be worse, I can still hear!
SPEAK NO EVIL!
I have had typical ataxia speech issues for most of my life, however the past couple of years my dad, Christina, and including myself have noticed that there has been some difficulty with my speech. I am having a harder time with being able to say one long sentence using the same breath. The sentence also comes at a slower rate. I usually have 1 of them speak on my behalf when I talk on the phone. If I do speak they know me and I them.
I may not be able to do the posts completely independently but it could always be so much worse. I still have my voice dictation software(Dragon NaturallySpeaking) that has not steered me wrong for the past 20 years! I never would have gotten through college without it!! I know that I have been through several different versions throughout the years and I know that it has probably been able to do more than I am aware. It is usually by accident but I am learning new things all the time! Sometimes I have friends who also has Dragon and helps me out with some things and vice a versa. I truly believe that if it were not for me using Dragon for as long(and almost daily)as I have my speech would have progressed quicker. It has strengthened my vocal cords! So I cannot say thank you enough for them! If you happen to see any typo or misunderstoods it is not my fault or Christina’s as it is Dragon’s! Dragon is a man-made product so it is not perfect after all, LOL!!
Learning to be content and grateful for what I do have is my overall goal! However, none of this would be possible without having God in my life, because I know WITH GOD ALL THINGS ARE POSSIBLE!!
It has been a long time since I have written last and have lots to catch up with you about! This will take 3 or 4 (I think) smaller posts. So I best get started! Catch you on the flip!
Rolling on, Stephanie
4 thoughts on “It could always be worse!”
Wow, that is the longest post you have written in a while! So proud of you! It’s so good to hear from you! I’m sorry that things are progressively getting worse, but your attitude is fantastic and you are so right! It could always be worse, and with God you can get through anything! I love you sweet girl, and I miss you, your dad, and Christina. Tell them hi and take good care of yourself! Looking forward to more posts! 🤗😘🥰
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I read this post aloud to my mom just now. She always likes to hear what you write, too! I enjoy sharing your writing with her in this way.
Thank you for the update on your current lifestyle habits, needs, struggles, and the ways that your faith and attitude help you to cope and overcome.
You’re a dear friend with such a gift for peace and gentleness, and I’m grateful to know you. *Hug*
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Thanks for being such a huge encouragement to me and others 🙏🙏🙏🙏😎
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