Mom. It’s a difficult word to describe these days. When I was growing up, my mother raised me along with my father. However, there were many women in the church who I called “mom” along the way because they were special to me. They weren’t my mom but they cared enough to watch out for me.
Today, as I wish “Happy Mother’s Day” I wish it to everyone who has had the opportunity to raise another life. To care for someone else and to love them as you do.
It’s my 57th Birthday! I don’t normally do much to celebrate the day but as I grow older, I have decided to celebrate these milestones. Each year that I reach has become milestones because the doctor in my youth diagnosing Charcot-Marie-Tooth (CMT) said I would not be walking much 40! Well, I am.
When I was in my 20’s I learned a trick to help me to get through the challenges of CMT. The trick is to celebrate or acknowledge accomplishments as I fight physical battles with a gift or celebration. Of course, there needs to be a goal set that should be challenging. The goals have included completing a series of physical therapy sessions without skipping or canceling one, swimming more laps and surviving it, following a water workout regiment and being successful, and walking the dog a set amount of miles. You can create or determine the gift or celebration at the time of creating the goal or once you reach it. I’ve waited until I reach the goal and go from there. Most of the time it is something simple like a few CD’s I’d been wanting or something from my railfanning interests like a book. Sometimes, it’s a big celebration.
When I turned 55, I celebrated it by taking a trip to the western Pennsylvania area to see a Chessie System locomotive which CSX Transportation had recently repainted as well as visiting the Horseshoe Curve National Historic Landmark in Altoona, PA. A week of trains was awesome. I celebrated the day by taking the stairs up the side of the mountain at Horseshoe Curve just to prove to myself and to celebrate I can do it. After all, I wasn’t to be walking at 55! This trip took planning to make it special.
For my 57th, I do not have anything special except to do what makes me happy! Unfortunately, due to COVID-19, I will not get to go to church today. We usually go out to dinner with the church family after the Worship Service. I will miss that on this day. However, I might have to walk out on my deck naked, jump up and down, and shout ‘Happy Birthday!” a few times. But, I will celebrate the day taking a very long walk with my dog. He makes me happy and enjoys my company. I might have to grill a steak or something and drop a piece for him.
For me, birthdays are personal. I have never ever been one who enjoys parties or gatherings with other people, especially for my birthday. When the office would celebrate the birthdays in a month, I always dreaded it. This is why I will pay attention to what makes me happy and celebrate my birthday as I like.
Oh, and, this day acknowledges 17 years of walking past age 40!
I hope you are doing well with all the craziness of COVID-19. Before I forget, the Charcot-Marie-Tooth Association (CMTAUSA) has shared this post for us, COVID-19 and CMT. Another post which is from the Hereditary Neuropathy Foundation has created a page with resources and a webinar. Check it out by visiting CMT & COVID-19. There are probably other resources but these two are ones I have found most helpful.
I am not expecting too many issues directly from COVID-19. I have practiced, for various and sundry reasons, social distancing for many years. When I retired, I really relished the thought of sitting in my sunroom or photography studio writing or working on a creative project. Of course, this included walking my dog quite often. More recently, I added cuddling my cat! All of that while my wife works part-time at a local church. Also, I have practiced the basic hygiene stuff everyone is repeating repeatedly and more often than not for all of my life. Nothing new there! And it should be nothing new to anyone except maybe really young children who are still being taught by their parents.
Unfortunately, however, I have started to have some CMT problems which have been prevented until now. I have used a regular Deep Water Aerobics routine for nearly fourteen years to combat nerve pain, stiffness, soreness, and to attempt to slow the progression. During this time of not being permitted to attend my Deep Water Aerobics classes, I am learning how beneficial the classes are and cannot wait until they return.
Water therapy is one of the best exercises you can do. Since I can only walk so far in one day, usually a max of 2.5 miles sometimes more, a water therapy such as Deep Water Aerobics adds the extra benefit of moving my feet, legs, arms, and hands in an exercising way which does not hurt me. Of course, you have to be comfortable in the deep water. However, you are not participating in the class without a life jacket around your waist. I happen to use ankle and wrist devices to help exercise and cause more resistance in the water. One class I took, we had to be able to do the class without equipment but no one ever tested us. However, we had a few sessions which required us to workout without them. Talk about a challenge!
I praise the effects of Deep Water Aerobics because that’s where I started and prefer to do my exercises. There are other classes in Water Therapy which might be better for you. I highly recommend a discussion with your doctor and with someone who instructs water therapy or water aerobics classes before you begin any regiment.
Keep smiling through this and we will get through it.
While we may be social distancing, it doesn’t mean we can’t call those we love and celebrate Easter by phone. Or, maybe send an email to share your love with your friends and family. If you are tech-savvy, you can “Zoom” together for a family gathering.
Today, Christians celebrate Easter as the day Jesus rose from the grave. Those who accept Him and Believe in Him will spend eternity with Him. An incredibly awesome promise.
A great website to learn more about become a Christian is Peace With God!
I think this might be an issue which most people with a disability, mental, or physical disability might go through. Frankly, I find it insulting and annoying! It seems to hurt me more than the pain I go through with Charcot-Marie-Tooth (CMT). And, when I find a friend who does this to me more than a few times, I have to quit hanging out with them because they are not a friend… in my book that is! The friend becomes an obstacle to what I am trying to accomplish!
What am I talking about? While I know CMT prevents me from participating in some of life’s events and adventures, a major pet peeve of mine is when someone decides for me, without asking me, that I cannot do something! So they don’t invite me. Or, they don’t ask me. Before I forget, my wife is excluded from these comments. She knows and can or has made decisions and I’m fine with that. She tends to tell people to ask me!
Several years ago, maybe even a few decades ago, after working through the diagnosis of CMT, I decided to keep a positive outlook in life, find the “good in life” every day, always finding the positive in new pain or health issues, and to do my absolute best in things so maybe I could prolong the onset of more problems. I have to admit, sometimes because of the person’s relationship to me, I will push myself to do or participate in something which can, and often does cause me quite a bit of pain. It’s because I want to do it with them or hang out with them or it means more to me to do this than to avoid suffering the pain. I remember one time I did something for someone and suffered pain and exhaustion the next day. However, I was very happy and pleased to have participated in the event.
Several months ago, a man had to orchestrate the funeral for another man. Out of respect, and in my heart, I wanted to participate in it because I thought so highly of the man. Well, I wasn’t asked. Later, I found out that it was because he knew it would be too much for me- you know, the pain. That hurt. And, that’s the pet peeve that I despise the most. I think it took me several months to get
Ask me. Do not assume. Do not make decisions for disabled people unless you truly absolutely know the answer and know you will not offend them by making the decision. Or, they have given you permission to do that.
Ahhhhhh! Spring! I am so happy it is Spring! My winter was nowhere near what was forecasted and saw very few snowstorms. Though last November we had snow but it melted off quickly. It fooled me as I was anticipating it to be the beginning of a very long winter.
We start this spring with a CO-VID-19 pandemic outbreak. Stay safe!
Happy Spring! We will get through this and be on to fun Spring activities soon!
Just a reminder so you don’t do like I did in college and arrive late to church! It was so embarrassing to have people leaving the church as I was arriving!
Set the clocks one hour ahead before bed on Saturday night!
Thus the journey begins as we head to spring followed by summer! I always look forward to this time of year as we leave the cold weather behind! Here in Virginia, we could have snow up until late March and even early April. If it accumulates, it will melt fast. A great thing!
A few weeks ago, I had my usual 3-week visit to the Chiropractor. It was my usual 3-week appointment for adjustments messed up or out of alignment because of my feet and the fact that, despite my feet, I keep myself pretty active!
For once, I arrived at my appointment without any pain. Anywhere! Amazing! Sometimes that happens but not as often as I what I would like. I keep trying doing the things I do and hoping above all hope that I will get better.
What are those things? I walk my dog every day. Some days are further than others but we always go for a walk. I take a Deep Water Aerobics class at the local Aquatic Center twice a week. I visit a massage therapist every 3 weeks and as I mentioned previously, the Chiropractor every 3 weeks. These help me to manage my pain considerably well.
During the visit with the Chiropractor, he did his usual routine of adjustments with me and concluded by saying, “WOW! I believe you are getting better!” He caught me off guard especially when he repeated it. He stated that he especially noticed my flexibility being better too.
While I know the medical world says Charcot-Marie-Tooth is uncurable. There is nothing they can do for me. Okay, I get that. However, I believe God can do other things if He so chooses. Also, He will give us wisdom and guidance to do things
When I hear something positive from someone about my health, I grab it and hold onto it. It might be a small comment or a kind word. I hold on it. Why? It’s encouraging to know that all the exercising I have been doing is helping me to look better along with function and feel better.
Yes, I typically ignore negative comments unless it’s something from someone I respect. People I respect will not say something negative unless it is something I really need to know.
When I was younger, Valentine’s Day sometimes was a lonely day. Sometimes, I would be dating a girl and we’d go out or do something. But, many times not.
I wish that I had realized back then what I know now or learned along the way. Valentine’s Day isn’t just about being loved or loving your girl or boyfriend. It’s a day to celebrate love.
The greatest truth I learned along the way is that God loves me no matter what. He is always there for me and will ALWAYS love me… even when I mess up really bad.
Thankfully, I will spend today with my wife and two boys. We believe in saying “I love you!” quite often and doing special things for each other all the time. Today will be pretty much a normal day but we will stress our love with a nice dinner somewhere.
I will thank God for the love of my family and friends today too.
I hope and pray that you have an awesomely blessed day!
Wow! Times flies. Faster than we realize. And, especially when you are really busy. Sorry I haven’t written in quite a while. This will be changing soon.
Since last August, life for me has been busier than usual. My wife, my Service Dog Noah and I traveled quite a bit this past summer-fall season. We like to travel and since CMT might make travel impossible in the future, we are trying to get through our bucket list. However, it wasn’t until near the end of my travels that I got incredibly busy.
A new store near my house, “Wild Birds Unlimited,” opened in late August. Well, I couldn’t resist applying for a job and working there. I have used their products and absolutely love them! I was working to learn more about feeding birds, teach others about feeding birds, and for the employee discount.
Around 10 years ago, a Wild Birds Unlimited store opened near my old house. That was where I got hooked. My first really nice bird feeders, birdhouses, and birdseed, which did not go to waste, like some products, nor end up on the ground causing weeds to grow, came from Wild Birds Unlimited.
I got the job and was very excited, to say the least. Though I worked only 8-12 hours a week, it took quite a bit of time away from my writing and photography. Also, Noah was beginning to be unhappy with my time away from the house without him going with me. I could have taken him with me, and I found I should have, but I was trying to adjust to a new schedule and job first.
How does a man with CMT work in a retail store? I took the job because it would be healthy for me to get out and do something a few hours a week. And, because I have been feeling much better lately than I ever have. Also, I have been able to walk Noah for up to 3.5 miles with minimal pain. I was anticipating being able to sit down for a few minutes here and there when customers were not in the store.
What I did not anticipate was how much my feet hurt at the end of every single shift. I would come home, take my braces off, and try to get the soreness to stop before bedtime. However, it often kept me up late.
I tried to manage the pain by taking a regular dose of 2 pills of Ibuprofin in the morning followed by the same dose four hours later in the afternoon. It wasn’t enough to completely stop the pain, but it dulled it a bit. I upped the dose to the maximum allowed and it still wasn’t enough.
I decided to live with the pain and try to make adjustments at the store by sitting down for a few minutes once an hour. The store owner knew I have CMT when I was hired so he understood when I needed to sit down. I made sure he knew about my limitations so it could not come back to haunt me.
However, I wasn’t too surprised to learn that I do not like retail. I thought that because I LOVE the products, I would enjoy it. For me, nope! Though my boss said I did a good job of assisting customers with products. However, I got too nervous when customers came into the store. Also, too nervous checking the customer out at the cash register. It wasn’t a good fit so I quit.
I have been busy since November attempting to get caught up on stuff I got behind in as well as promoting my photography and writing business.
On my last day at the store, I learned that my church really needed my skills in writing, communication, and photography so it looks like I will not have much time to be bored!