By Janice Lee Jones
As an individual faced with HHT, I’ve discovered it involves a great deal of balancing, rearranging, adjusting and attempting to maintain the daily challenges of a healthy lifestyle that’s beneficial for me. This is definitely true for anyone faced with any type of sickness and disease, and the many discomforts and interruptions that brings. But I’m of course speaking from the perspective of an individual with HHT.
From waking up with a nosebleed to having them occur unexpectedly at any moment during the day; having spasms in my rib cage or chest area where I had a partial lobectomy from AVM damage; issues with breathing; managing low iron levels and iron loss; or the mental toll of coping with the disease. I have discovered I must exhale every minute of the day. I must relax and be in control, however overbearing and challenging the physical and mental complications of HHT I may face.
The following are a few things I’ve found I must focus on daily (sometimes not all each day, only whichever is best suited for the situation) and it helps me to get through.
Prayer and Meditation
This is the most important and crucial part of my life and a daily must. I’ve stated previously I’m a Christian. Therefore, prayer and faith in Christ for me is first and foremost in my life. Those days when I truly feel I can’t go on or just don’t know how I’m going to deal with another doctor appointment, iron infusion and/or blood transfusion, countless medical tests and follow-ups, I say a prayer or read a scripture for the strength to press forward and stay in the race.
Relaxing, Releasing and Taking Time for Me
I find taking time to take care of me at the end of each day is pertinent. Even if it only involves a quiet bath and hot cup of tea with some soft music, or a television show that gives me a laugh at the end of the day. This allows me to relieve myself of the day’s tensions and let go. I try to have a spa day at least once a month, which usually involves a pedicure and manicure due to terrible cuticle issues I’ve had since being diagnosed and treated for HHT. I also take advantage of chiropractic visits and massage whenever I can. These are things that help me relax and maintain physical well-being. Even a walk in the cool of the early morning or evening is quite therapeutic.
Proper rest is major for everyone, but I believe for anyone with HHT it is an absolute. I’ve found certain medications I take, and especially after an iron infusion and/or blood transfusion, my body tends to be a little fatigued until the treatments take effect. Now that I’m on oral iron, my blood levels aren’t as vigorous as compared to the infusions, and it takes more time for my body to absorb the iron and produce blood cells and energy required. Needless to say, avoiding proper rest is a non-negotiable factor.
Friends, family, social workers, medical professionals, church family and other relationships are an important part of my life. Those persons who offer an encouraging word, pray with me, offer support, help me medically understand what my body is facing, and the many various situations I face, are appreciated and needed. I’ve realized I can’t endure this issue as well as overcome it alone.
Remaining positive and keeping an encouraging outlook on my life with respect to the disorder is a vast part of my day to day existence. Regardless of how I’m feeling or what I’m facing, I keep the uplifting thought in my mind this will one day pass and a cure will come forth. This helps me to smile, stay optimistic and be a source of encouragement to others.
So Much More…
There are countless other things I could mention, but will defer to in future blogs. There is much I’m still learning and in search of as I cope and deal with the disorder. I’m ever encouraged and treat each day as a day that gets me, and many others faced with HHT, closer to a cure and a hopeful future.