Tonight's picture was taken on August 31, 2008. This was Mattie's first month in the hospital managing his cancer diagnosis and chemotherapy. Pictured with Mattie is Jude. Jude is one of the hospital volunteer musicians. That weekend, Jude came to visit Mattie, and with Jude's visit always came a cute red wagon filled with all sorts of musical instruments. Jude always encouraged Mattie to pick an instrument and play along with him! Mattie typically participated if he felt up to it! You also notice that Mattie was wearing a Nationals Baseball jersey. That afternoon, Linda (Mattie's child life specialist) and Jenny (Mattie's art therapist) came to visit Mattie after they had just taken a bunch of kids from the hospital to a Nats game. Clearly Mattie couldn't go on this trip, but they instead brought back Nats park for Mattie, which we all very much appreciated.
Quote of the day: Depression affects almost 80% of migraine sufferers at one time or another. People with migraine, especially chronic migraine, also are more likely to experience intense anxiety and to have suicidal tendencies. If we want to live happy and joyful lives with migraine, it is vital that we acknowledge and deal with the emotional realities of the disease. ~ Sarah Hackley
I came across Hackley's quote tonight and it caught my attention. I would say that living with chronic headaches are indeed challenging at best. They impact every aspect of one's life, and I should know since my first real headache started on the day Mattie was born. It hasn't left me yet. It is just what number on the pain scale is my headache in a given day. It is hard to believe that I have not known a headache free day in over a decade.
To try to deal with the symptoms, my neurologist put me on a medication for cluster headaches about two years ago. I have been on this medication since that time and it keeps the headaches from spiraling totally out of control, and enabling me to have some sort of life. However, this Fall, I began getting kidney stones. Well in turns out that this headache medication causes kidney stones in some people who use it on a long term basis. I happen to be one of the lucky few. Which therefore means I needed to come off of my headache meds. Which has taken all summer to accomplish this task! But now I am not only back to having severe headaches but also dealing with a kidney stone flair up at the moment. The reality of the state of health care today is that you may address one problem SLIGHTLY, and then landed up with a list of other issues from the medication.
On a grander scale, I certainly saw that type of medication downward spiral with Mattie. Mattie never had depression, anxiety, of post traumatic stress symptoms prior to cancer treatment. However, after his second surgery, and all his experiences in the hospital, these treatments took a toll on Mattie. So much so that he was diagnosed with several mental health issues. However, at every turn, when we gave Mattie some sort of medication to manage a symptom, that medication would cause 12 other problems to arise. It was always overwhelming and disheartening to see in a six year old. So I don't know what the answer is! Clearly in Mattie's case he needed the treatment, otherwise he wouldn't have lived 14 more months after his diagnosis. But for people like myself who have chronic and long term issues, in which there are no exact treatments, it is challenging to know what to do. Especially given what I am dealing with now.....kidney stones every three months... which is a total roller coaster ride of fun.
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