It wasn’t that long ago that my friend had a surgery on both arms. Each arm was separated by two weeks of healing but the healing hasn’t completed. In fact, as of today, the patient swears the pain is worse than before the surgery.
On top of that there had been specialist ordering specific tests because as three of them said, “Something is going on inside your body, but I am not sure what is wrong.” After these tests and weeks in between doctor appointments, I have had to sadly sit by and watch this patient suffer daily.
The latest update as of two weeks ago is the patient has Spinal Muscular Atrophy. At first my eyes about bugged out of my head when I heard these words because it was just too unreal that I may be living through the nightmare my brother lived through with his Multiple System Atrophy.
You can see through the words that these two resemble each other too well. I guess this one begins within the spine and my brother’s began in the brain. Although the brain seems to intertwine in both illnesses. The nerves are involved, the unsteadiness and the chronic pain along with other similarities.
For now, we are waiting for two tests to be performed in early October. Until then, I will sit by and be supportive, thinking to myself, I can get through this with my friend, I did it with my brother.
I am trying to make a new habit of finding something inspiring and posting it here to share with you. This is what I found today.
Last week, I took my children to a restaurant.My six-year-old son asked if he could say grace.As we bowed our heads he said, ‘God is good, God is great. Thank you for the food, and I would even thank you more if Mom gets us ice cream for dessert. And Liberty and justice for all! Amen!’Along with the laughter from the other customers nearby, I heard a woman remark, ‘…That’s what’s wrong with this country. Kids today don’t even know how to pray. Asking God for ice cream! Why, I never!’Hearing this, my son burst into tears and asked me, ‘Did I do it wrong? Is God mad at me?’As I held him and assured him that he had done a terrific job, and God was certainly not mad at him, an elderly gentleman approached the table.He winked at my son and said, ‘I ha ppen to know that God thought that was a great prayer.’Really?’ my son asked.’Cross my heart,’ the man replied.Then, in a theatrical whisper, he added (indicating the woman whose remark had started this whole thing), ‘Too bad she never asks God for ice cream. A little ice cream is good for the soul sometimes.’Naturally, I bought my kids ice cream at the end of the meal. My son stared at his for a moment, and then did something I will remember the rest of my life.He picked up his sundae and, without a word, walked over and placed it in front of the woman. With a big smile he told her, ‘Here, this is for you. Ice cream is good for the soul sometimes; and my soul is good already.’The EndI love this story!Please keep it moving.Sometimes, we all need some ice cream.I hope God sends you some Ice Cream today!!!
I read this on my friend’s Facebook and loved it instantly because there are many words that I need to remember for myself. I thought you may like this too.
What a speech by Pope Francis yesterday! Worth a read regardless of your faith *You can have flaws, be anxious, and even be angry, but do not forget that your life is the greatest enterprise in the world. Only you can stop it from going bust. Many appreciate you, admire you and love you.Remember that to be happy is not to have a sky without a storm, a road without accidents, work without fatigue, relationships without disappointments. To be happy is to find strength in forgiveness, hope in battles, security in the stage of fear, love in discord. It is not only to enjoy the smile, but also to reflect on the sadness. It is not only to celebrate the successes, but to learn lessons from the failures. It is not only to feel happy with the applause, but to be happy in anonymity. Being happy is not a fatality of destiny, but an achievement for those who can travel within themselves. To be happy is to stop feeling like a victim and become your destiny’s author. It is to cross deserts, yet to be able to find an oasis in the depths of our soul. It is to thank God for every morning, for the miracle of life. Being happy is not being afraid of your own feelings. It’s to be able to talk about you. It is having the courage to hear a “no”. It is confidence in the face of criticism, even when unjustified. It is to kiss your children, pamper your parents, to live poetic moments with friends, even when they hurt us. To be happy is to let live the creature that lives in each of us, free, joyful and simple. It is to have maturity to be able to say: “I made mistakes”. It is to have the courage to say “I am sorry”. It is to have the sensitivity to say, “I need you”. It is to have the ability to say “I love you”. May your life become a garden of opportunities for happiness … That in spring may it be a lover of joy. In winter a lover of wisdom. And when you make a mistake, start all over again. For only then will you be in love with life. You will find that to be happy is not to have a perfect life. But use the tears to irrigate tolerance. Use your losses to train patience. Use your mistakes to sculptor serenity. Use pain to plaster pleasure. Use obstacles to open windows of intelligence. Never give up …. Never give up on people who love you. Never give up on happiness, for life is an incredible show.* (Pope Francis).
I don’t know your age and maybe it doesn’t matter much when we speak about the lack of moving due to our pandemic.
I can’t believe I have been pretty much in my home since March of this year. It has been long enough now, that it feels normal to me, but what doesn’t feel normal is the aches and pains I have.
I am pretty sure that some of it is due to my age and the other part is due to lack of movement. I have aches in my knees and hands and sometimes hips. I think there are also days of slight depression as I argue with myself about getting up and moving. I am really good at making excuses up.
I don’t stand very well. It’s way too hot outside. I don’t feel good today. I’m tired. I’ll do it tomorrow. Have you said any of those things to yourself? I am not talking about an exercise program or running a five k.
I’m talking about just beginning to do some stretches here at home with some music in the background. This is when I think I realize I have depression days. A time where I know what is best for me but a matching excuse on why I can’t.
It is summer time and each summer for the past three, I have had issues with swollen ankles. My doctor says that as long as the swelling reduces each morning, there is no reason for alarm. Maybe if I moved more, I wouldn’t have this issue. I’m not sure, but if you watch TV or read articles, living is all about the exercise.
The bad thing is, I never liked exercising unless it was fun and others were involved. I love swimming and used to do that a lot until the lakes around my area became more polluted. There is the YMCA and I tried that too but didn’t enjoy it so much in the summer as the pools were packed with kids and I didn’t like being cold in the winter after leaving the building from exiting the pool.
I used to love to take walks. I actually miss it a lot. It isn’t fun to walk any longer as it is more work than pleasure because of my Ataxia. I can remember as a youth, I loved to play tether ball and bad mitton. Did you ever play either of those?
After reading back my words, I believe I am too used to sitting and a bit depressed and not very energetic. Shame on me. This is one area that no one can fix but me. It sucks when we realize the truth and then battle with ourselves on what to do with that truth. I hope that you are dealing with this pandemic much better than I am. Hopefully, one day it will be over and we can go back to our old normal.
Now, let’s talk about that weight gain throughout these months of the pandemic. No, on the other hand, let’s not. That’s a whole other story.
Today is Monday and what will this week bring for me? I know that tomorrow my experience in being a caregiver will kick back in as the friend I watched over a few weeks ago is now going to have surgery on the opposite arm.
I hope all is going to be alright. The arm that was first done began healing and then I was told a feeling of a snap was felt and ever since then, there is more pain than in the beginning.
There were no guarantees to get a permanent fix, but the surgeon was hopeful that more damage would not be done to the arm and hand and a great relief of pain. Prayers for this friend will be said.
The Ulnar nerve is what seems to be the problem.
You can’t see it good from this photo but there is a little groove that this nerve fits into and it runs from the shoulder to the tip of the last two fingers. When it isn’t working properly, tingling and numbness and much pain take over. The last two fingers don’t work well and when you are a type one diabetic on top, there are risks of the surgery not being a great success.
We just never know what life is going to throw at us do we? Some people seem to have an easy, flowing brook in their life. Smiles and good things always happening. Great sight of future dreams and then there are others who because of an illness just seem to have one issue after the other. I suppose God allows the mentally strong ones to take on this type of suffering. He uses us you know. He uses us as examples and places us in the view of those who need to see our lives and their own.
I was able to purchase a hand-help shower nozzle this past weekend. With the aid of my shower chair, I took an awesome shower with no fear of falling and I even got to wash between my toes! Believe me, when you are a high-risk faller, washing the toes can be quite tricky. Today the men who fix things in our complex are supposed to come place a grab bar I have on the wall. This will lower the risk of falling so much better. I can’t wait until it is done.
This past week, I have been hooked on watching Little house on the Prairie. It amazes me at the strength in the parents to bring their children up properly. They pay close attention and make sure all homework is done before play time. The meals are eaten all together too. It’s no wonder I seem to connect to this show. That’s pretty much how I was raised. If I didn’t bring at least a C home on report card, I could guarantee I wasn’t doing much socialization for the entire next grading period.
I can remember having to go to bed at eight on school nights in elementary, nine in seventh and eighth grade and ten in tenth, eleventh and twelfth grade. When I began working I could stay up until eleven. Did you have rules at bedtime?
We had a routine during the school year. We got home from school, we were to do our homework and then I did anything my mom left a note for, sometimes a load of laundry or iron a basket of clothes, After that was done, many times I began or fixed supper. After mom and dad got home, we ate and then us kids cleaned up and did the dishes. The rest of the evening was our free time. What were your school evenings like?
With this new schedule of virtual learning, E-learning or going to school, life should be most interesting for the schools and the parents. I am so glad my children are all grown. I pray that God shuts this virus down for our country. We have so many issues in our world, we really don’t need this on top.
Well, you each have a great day and I will talk to you later on.
I don’t know about your area, but here in Indiana the topic lately is schools. The question is; go to school or E learn at home.
I know people personally who have had their families affected by this Corona virus. I can’t say I wish I was in their place when it comes to this decision. We all love our kids. Why would we risk sending our kids to maybe come in contact with this virus. We would never forgive ourselves, would we, if something happened or became tragic.
What are parents thoughts? There is probably thoughts of a proper education or if the children stay home; who’s going to care for them if the parents are working outside the home. Even if the parents work inside the home, can they afford to be interrupted?
There could be issues of transporting to and from school and maybe food becomes more of a problem if the kids remain home each day and all week.
I don’t know what I would do. I would want my kids to have the best education I could give them and I know socialization is very important to having a well-rounded adult. What are your thoughts and what might you decide, because after all, these are our kids and we want them safe.
I have never been the one who goes on vacation in the summer time. One time I went with a past husband and I ended up getting pregnant. Now that was a vacation that I will never forget, every time I look at my son.
I would love to go somewhere, even for a couple of days but this summer has been the strangest ever. If you cross the state line or if you go into a store; you risk catching the virus. The beaches are open but there are people there. I guess i don’t want to risk getting Corona 19 because I remain home most days.
I see the television ads for places far away and I think, how dreamy that would be and then I start thinking of the money needed to go and the prep work in getting ready to go and by then I am tired.
I imagine my summer trip will be my trip to the Movement Disorder doctor in Indianapolis, which is about three hours from me. I will have a companion with me and most likely get a motel because I have a hard time getting around in the mornings and I would have to leave here by around six-thirty and I don’t do well with that.
I have a porch where I live but the humidity has kept me from sitting on my porch chairs most days. The good thing is, next week we are to be in the seventies. Wow! What great temperatures. I will try sitting out throughout this period.
I will be soon repeating my care giving skills as my friend who had the surgery a couple of weeks ago and for whom I cared for, is having another surgery on the opposite arm. I am okay with it. I like caring for others and I am mentally prepared to as what my duties will be as this is a repeat of the first surgery.
Tomorrow I am going to be able to get out of the house for a while. I am going to be a passenger and get to go two a few places out of town. I will be able to enjoy the ride and probably take a few photos.
Can you believe July is almost over? Our weather has been more like August so I wonder what our next month will be like.
Do you have any plans for the rest of the summer?
Below is a few photos I have taken in our summers in Indiana.
I haven’t been on the computer too much in the past week. I was with a friend who was also a patient for surgery. After the surgery, I was helping with daily needs as the surgery was on the arm.
I almost forgot what it was like to help someone in person. I had over twenty years caring for the sick and aging. After caring for Hospice the last five years and then caring for my brother and my father during their terminal illnesses, I have only cared for myself these past few years.
It wears you out! How did I do that for so many hours and years? Maybe I was just younger and of course I didn’t have this neurological illness then. I always had this thought. God gave me the experience to be able to care for my brother and father in their homes instead of nursing homes and then when they both passed, my job was done.
It seems all in perfect timing to me, except the part of now I am the one ill. I wish sometimes that I had the family member to help me, but with my experience, I am able to care for myself for now.
Have you ever had to care for someone? How long was it? What were your duties?