health – The road less traveled

My Comeback

I would like to start this post by thanking everyone who hung in there while I was on a nearly 5 year hiatus. I am so happy to be able to start posting again, even if I have to take baby steps. God bless you all and thank you so much!

In May of 2017, I developed a neurological condition called Spasmodic Torticollis, also known as Cervical Dystonia. After trying unsuccessfully to ease the spasms and pulling with Botox, my condition worsened and I became very sick. This condition took a wrecking ball to every area of my life. I was no longer able to use my computer, read, write, apply makeup or do anything that required my head to be still. Even sitting became nearly impossible, as well as being able to relax and lie still.

Thanks to the good Lord, I came across information about the Spasmodic Torticollis Recovery Clinic in New Mexico. I started a remote program of massage, stretches, weight exercises, dietary guidelines, and attitude work over four years ago today. Like many things that we set out to do, my recovery has taken much longer than I thought and been far more difficult than anything I have every done.

Photo by u0410u043du043du0430 u0420u044bu0436u043au043eu0432u0430 on Pexels.com

During the first two years of doing the program, I thought for sure it would only take two years at the most to recover. Boy, was I in for a surprise. It took until recently for me to understand why God is taking so much longer than I thought to help me win this battle of battles. God didn’t just want to heal me physically. God wants me to be whole. He wants to heal my spirit, soul, heart, and mind. I tried many things during the first three years of my journey, like trying to make things happen in my own timing. All that did was prolong the process and even put me on an 18 month long detour.

I look forward to sharing with you the things I have learned. Things such as patience, perseverence, trusting in God’s timing and ways, overcoming fear and others. I would have never learned so many of the things I did if I would not have developed Torticollis

I am excited to report that I am about 95 percent recovered! Once I reach full recovery, I will develop a maintenance routine and continue most of what I currently do; however, on a much smaller, more manageable scale. Next will be stepping back into my life, which I am currently working on in small, baby steps. I am hoping to be able to make more consistent blog posts in the near future, but until then, I will do what I can each day and each week.

Am I the same person I was before I lost my health? I think that anyone who has also had to deal with a chronic illness would say, I am definately not the same, but better. Thank you so much for your time and I look forward to beginning my life again!

Land Ho!

Three years ago I was diagnosed with a chronic health condition called Torticollis, also known as Cervical Dystonia. It took about nine months to even receive that diagnosis. I tried Botox injections hoping they would give me relief, but they ended up making me worse. I left my job, and many parts of my life were left in pieces. The simplest of tasks, such as using a computer, eating, and applying makeup, along with the more difficult task of caring for my son, became increasingly difficult to do. By the following Fall, I was sick and had no answers.

It took me longer to find an answer because all I could see was my life in pieces.

As I was reading Diagnosis Dystonia, by Tom Seaman, I came across a chapter where he talked about the Spasmodic Torticollis Recovery Clinic in New Mexico. This program helped him to recover, as well as many others who stayed faithful to the program all the way through. I was very excited after visiting the website and decided to do the remote distance program.

Finally, I saw rays of hope on the horizon.

As of today, I have been working hard at the program for two and a half years and I can finally see land in the distance! This has been the most difficult battle I have ever faced, and yet I have grown closer to Jesus Christ and learned things I would have never learned without going through this. I have learned many lessons about patience, faith, perseverance, trusting God, and the importance of knowing God’s love. I have also experienced being at one of the lowest points in my life and in the darkest nights of the soul. This battle of battles will become my testimony.

Knowing that God loves us is one of the most important parts of healing.

Sometimes the home stretch is the most difficult and I am working harder than ever on my program to reclaim my life. Just writing in this blog is a huge step towards the finish line! I am so very thankful for all of you for sticking around even though I have not posted for years. My writing is a bit rusty, but I am keeping at it and I know it will be even better in the end.

I look forward to sharing what I have learned and what it means to trust God with everything. I also had to overcome the worst fear I have ever faced. The Lord has given me strength to do the program every day and take care of my adult disabled son. This has not left me with a lot of free time, but in order to achieve victory we have to pay a price for a while. Once I am on the other side of this storm, I will be stronger, healthier and wiser. I will be better able to serve others and be who God created me to be. Like Joyce Meyer said, “Let your test become your testimony.”

We go through difficulties and trials to come out at the other side ready to share our story and give hope to others.

Grief, Interrupted

The year after Christian passed away was extremely painful, but thanks to the strength and comfort of God, we made it through a day at a time. Dave’s job became extremely demanding in the following month after we lost our boy. He went with the flow for the next several months but by summer, working 14 hour days was not enough for the company, so he had to leave. The following September, Dave suggested I call the company that I worked at before leaving in 2005 to care for the boys’ increasing needs. I called them, dropped off my resume, and everything fell into place. I was terrified because I had been out of the work force for so long but I was also thrilled and very thankful for the opportunity to work for my family again.

About a week into my return to work came the first anniversary of Christian’s passing. Dave suggested that I go to work because the distraction might be good for me. I lasted about five minutes. Over the first few months I experienced a lot of nervousness each morning before I left for work and I started to experience slight anxiety when I performed certain job duties. I thought nothing of it because all jobs come with stress and anxiety. By summer, my anxiety increased and depression started to weigh me down. I started becoming emotional about things that normally would not make me so upset. I began to worry about the most ridiculous things, which fed my anxiety.

I took the second anniversary of Christian’s passing off along with what would be his 22nd birthday. I spent the greater part of that fall in a state of sadness as I remembered the days leading up to his passing. By Christmas my emotional problems worsened and the anxiety led to panic episodes the following spring. I took a few days off and started seeing a counselor. This slowly started to help and I really thought I was going to start feeling like myself again.

About two months later, I started to experience tightness in my neck. I associated it with ergonomics at work and tried carrying things differently, sitting up straighter, etc.. By fall, my neck worsened and the spasms set in. I kept working hard and doing everything I could to keep up with the workload. I also started acupuncture and massage therapy. My condition worsened to such an extent that I was having trouble eating, driving, and putting my makeup on. I did not receive a diagnosis and treatment until March of this year. I was confident that the treatment would help and things would go back to normal again.

The first set of injections only made my condition worse and I had to take a month long medical leave. Before I requested the medical leave I had a major panic episode and my good friend and neighbor stayed with me for a few hours. Before she dropped me off at home she looked at me and said that “my kettle blew.” She said that at the botton of the kettle was grief and stacked on top of that was my illness, worry for my son and husband, and the stress of my career. She said I needed to deal with the loss of my son by joining a grief group and learning about the stages of grief. It was at that point that I realized that I hadn’t been grieving since I returned to work. The fear, anxiety, and massive change I went through interruped the grieving process. I ended up leaving my job shortly after my medical leave.

It is easy to associate depression with loss – losing a child is devastating and I experienced days and moments of sadness that I thought would crush me. Ongoing depression that does not let up, however, is a sign that a person is not grieving in a healthy way. I had days that were harder – the pain felt more raw and I would cry, but I really thought I was moving forward and healing from the loss. There was so much going on in my life, so much change, that the grief and pain ended up buried underneath of it all. Unfortunately, it took an illness to open my eyes and see that I still have some grief work to do. Perhaps this blog post is a way of moving forward.

It may seem easier at the time to run away from the pain, bury it by keeping busy, or to tell everyone we are fine, but in the long run it can have devastating effects on our emotional, physical and spiritual health. I encourage you to reach out to friends, family, your pastor, grief counselors, or write it all down in a journal. Don’t bury your pain. Go through it so the pain doesn’t end up being wasted. Perhaps making it to the other side of difficulties makes us stronger so we can in turn help others who are hurting. Christian was my son, friend, and my teacher. I love him too much to waste the pain of losing him.

Staying Healthy as a Caregiver

As parents, we all know the value of taking care of ourselves. As a parent of a special needs child it is even more important. The physical, emotional, and mental demands can easily cause burnout if we neglect ourselves. I have learned a hard lesson with this over the last year.

For over 10 years, I was blessed with great health and strength as I cared for my two sons. Due to the progression of Duchenne Muscular Dystrophy, their needs only increased over the years. As their needs increased, my free time became more sparse so I had to make an effort to make the time count. I tried getting out once a week to my favorite coffee shops or the bookstore to enjoy my favorite novel, going for walks on the River’s Edge Trail, or reading the Sunday paper with a cup of freshly brewed coffee. I learned to cherish the small things and I still do.

I was diagnosed with Cervical Dystonia two months ago and for the first time ever, I was unable to care for my son. It was a very painful, humbling feeling and I am thankful my husband did most of his care. I have learned a lot going through this experience. I learned that it is far easier and not as expensive to prevent illness than to have to heal from it. Dystonia is genetic and it is possible that I may not have been able to prevent it, but like many illnesses it can be overcome. I wanted to share some simple, yet powerful steps we can take daily to stay healthy and have the energy to keep up with the sometimes overwhelming demands of caregiving.

For many years, I got up well before I needed to get the boys started for the day. Before Christian passed away, it took 3 1/2 to 4 hours to get them ready for the day. It was far easier to accomplish this on a daily basis when I knew that I at least did my personal care and took some time for myself already. This time can be spent doing the things we enjoy such as sitting quietly with a cup of coffee, reading the paper, in prayer, listening to music, or exercising. Every afternoon, I would lay the boys down for 30 minutes of rest time from their wheelchairs and take that time for a cup of tea and a good book. If I had extra time before preparing dinner I would use that time to write a letter to a loved one, send a greeting card, practice playing the piano or sit outside in the sun and watch the birds. It is amazing how energized I would feel after taking even 20 minutes to read a book I enjoy.

P1000241 — This is the last photo taken of Christian and me together.

After losing Christian, I lost my way. All of a sudden I had all of this time I never had before, and for a long time I felt guilty for trying to do something for myself. I have since realized that it is an honor to Christian’s memory to pursue my dreams because he never gave up on his. Christian read books up until the last 2 weeks of his life. He tilted back in his wheelchair, turned his head sideways on his headrest, and read on his iPhone. We all have gifts given to us from God and if we do not invest in them, we are throwing them away. The world ends up not being as wonderful as it could be with our gifts.

Christian won an award in high school for his excellent work overcoming his disability to create art.

Pursuing our dreams and goals also encourages our children to never give up despite their physical limitations and it also instills some normalcy into their daily lives. We have more energy to enjoy life and we become strong inside so we can better face the uncertainty associated with complications from the diagnosis.

Please share some ideas you may have about taking care of yourself and enjoying life to the fullest as we care for our loved ones.