August 2 2014

August 2 2014 Greetings My Friend, A recurring theme I see on my support group sight is how people may look good but are truly struggling with pain, with an unseen illness that is playing havoc in their lives. In a round about way it is something I have dealt with but since I had no name for my birth defect much less knew I had one until a couple of years ago. As I began researching about Chiari Malformation I started to see why I was the way I was/am. Extreme tiredness has plagued me for a lifetime. When Junior met me he mentioned a time or two about how either I was up and running or I crashed. I did not seem to have that “in between” stable day to day energy. Either I was going or I stopped. Next I learned that balance issues is another aspect to this disease. For me as a youngster I was doing cartwheels, back bends, running and other assorted physical activities. I had good coordination over all but I often would all of a sudden trip over my feet for no apparent reason. Today I know that the culprit is CM. My current balance issues is part of this problem along with my hands shaking. I spent a lot of time vomiting in recent years which some of it is GERDS, a hiatal hernia, and more recently I have found it is also CM. So the disease disguises itself alongside of other common problems. In fact with Zantac and Protonix I don't vomit very much these days. Although I still regurgitate my food even my water consumption several times a day. More and more in recent years I've had bronchitis again. I was struggling with being winded doing simple tasks. I kept thinking it was the price I paid for entering into my senior years. I had never smoked so COPD did not make any sense. Then I was diagnosed with COPD and I learned that 2nd hand smoke was the culprit. A couple of years ago I blacked out and rolled down a hill. I had never blacked out like that. My doctor thought it was due to my lack of sleep. At that time I was sleeping only an hour or two at a time. A sleep study test showed I had sleep apnea. I thought due to a deviated septum. Now I learn that most CM patients tend to have sleep apnea and need a CPAP machine. My balance issue hit me hard and was out of the blue. All of a sudden I began tripping over “nothing”. I took some more huge spills. I had some goose eggs on my forehead and even a black eye due a fall. Of course CM is the culprit. I learned that some people may have CM and live symptom free for their entire life and some people develop symptoms later in life. I fall into that category. I was told I am at the worst and things should settle down. I've learned that most people don't have a headache when they sneeze, strain or even wake up with a headache. Mine are highly uncomfortable but a cup of coffee usually settles my pain. Some people are in major pain and need decompression surgery to relieve pain to quiet down the decline. The problem is once symptoms come on those symptoms will never go away. For me my headaches when I sneeze or cough feels like my brain bouncing around my skull. It is quick and it ends quickly for me but those few seconds are awful. My Dad had polio when I was a young girl. I grew up with disability and I learned many lessons on how to treat the disabled by letting them know I was there but also allowing them to try if they wanted to. Today while we were at a yard sale I bent down to get something on the ground. As I was attempting to rise up the lady next to me reached out to help me up. I was surprised that I was that unstable looking. I was glad her hand was there and surprised at the same time. My cane is a physical sign of a disability. Sometimes I am standing still and I wobble around again there is a physical sign. Many CM patients don't have that physical sign. The headaches come on as strong for some like a migraine. Many CM patients go weeks in constant headache pain and people are insensitive to their struggle. People assume you are faking, trying to get attention and frankly they are in major pain. I began my faith journey with extreme emotional pain. As the emotional pain subsided I am now facing physical pain. Both COPD and CM are progressive which can be very scary. My first instinct is to feel real bad for me, to be angry at the smokers in my life. As I left my abusive marriage and realized the horror that my children lived through I was beside myself. A minister taught me that I can't change the past and I can change the future. To be honest the anger and unforgiving attitude won't make things better. Being pro active means I can live a quality of life and even a longer life. At this point in my journey I start off with more confidence than I did at the start of my faith journey. I have past experiences to call upon where God held me, moved me out of a situation and I saw/see the day where the huge struggle is a memory. It is that hope that keeps me keeping on. May God bless you and keep you make His face shine on you. Love Janet