Please help me help the kids, and thank you so much to those who have stood with me for so long.
Here's the link to make a donation on my page:
http://pbtf.convio.net/site/TR/2016RideforKids/General?px=1216645&pg=personal&fr_id=2645
In too few hours, the Hogan household will be stirring to life to join a bunch of bikers in Las Vegas. Tomorrow is the Las Vegas Ride for Kids event! I've been participating since 1999 and we have seen some great progress in that time. Thanks to some very generous donors, we're taking $1,400 in online donations as of this moment. That's $200 above the goal we set for ourselves. Can we do better? Could we hit $1,500 by 9:30am Pacific time? If you haven't helped out yet, please consider it. Even a donation of $5 makes a difference. Most of the folks that will be there tomorrow will come with a pile of small donations of $1, $2, $5. Together we are all beating childhood brain tumors.
Please help me help the kids, and thank you so much to those who have stood with me for so long. Here's the link to make a donation on my page: http://pbtf.convio.net/site/TR/2016RideforKids/General?px=1216645&pg=personal&fr_id=2645
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Yesterday I got hit by an annoyance. In reality, it was no big deal. It was the likely ending of a medical relationship that I really saw no value in clinically anyway. I was hoping. And it helped keep me busy. But the way it came about was a like a punch to the gut. Somehow, I should take it as a sign and a relief, "OK, no more wondering. Now I can move on." But, as the wife pointed out, I just don't have the positive bounce back and spin in me right now. I'm tired.
That's part of a degenerative illness I suppose. Much of life continues to be on a learning curve. I seem to get a little worse every few weeks. But as I do, the world doesn't pause. It doesn't take a breath. I don't really want to disembowel the washing machine. But, it didn't bother to ask if this was a good time to break down. I have another text book coming. The wife asked last night if I was finally burned out on school. That's when the tiredness became clear. All I want to do right now is ride and write. I want to get on the bike and go see friends in Utah, California, Idaho, and Montana in particular. I want to take a week and head northish. I want to finish the book I started years ago. It's based on a true story. Some of it belongs to me. Much of it doesn't. It is a book of tremendous emotional pain, but also healing, hope, grace, and love. So often, I've been told that I come off as confident and strong. I feel neither of those things right now. Right now, I know what I need. But I'm scared to ride, I'm scared of the disease and the symptoms. I'm scared to write because I'm afraid of the fog that fills my head when I try to think when I'm tired, and I'm always so tired. But, I also know that I'm always happy when I succeed at something that scares me. Stiff Person Syndrome, like many other immune or neurological (it's both) diseases/disorders has secondary issues tied to it. First, there are health issues that are often the true killers.
A great example is Parkinson's Disease and Pneumonia. Parkinson's really doesn't kill. But, people with Parkinson's often have trouble swallowing and end up inhaling something they shouldn't and/or have trouble coughing and can't get excess mucus out of their lungs. In either case, Pneumonia, which is indeed a disease all to itself and technically has a cause that is separate from the Parkinson's, ends up as a secondary disease. The reason it is secondary is that the weakened condition and specific failings of the patient's body are what create the opportunity for the disease to take hold. In addition to the secondary health issues, with many diseases and disorders, we see life effects. In other word, something about the disease or disorder causes people to change something about their lives or encourages certain types of emotional or mental stress. Anybody facing a debilitating condition is likely to change their work and leisure habits. Some go from being vibrant active outdoor types to housebound wallflowers that basically whither away. Caring for and spending time with loved ones, especially children changes. Some disabilities are very visible and even odd looking which creates challenges in social situations. But some disabilities are linked with higher frequencies to certain other issues. Stiff Person Syndrome is one of these. Presumably, because of the type of problems people with SPS deal with, anxiety is a frequent problem for patients. Many people with SPS have relatively sudden attacks or episodes. Frequently this is caused by a sound or other stimulus. Many patients have the characteristic attacks that give SPS its name. They will suddenly go into some strange pose and be frozen there, even as it causes them to fall to the ground. So, doctors expect anxiety to be a problem. And many doctors still believe that the symptoms of SPS are really psychogenic. Meaning, they are caused by an emotional issue, like anxiety. But, there is another possible link. Some anxiety medications are linked to the creation of similar chemicals as those that are believed to be lacking in patients with SPS. So, it only seems likely that there is a chemical relationship between SPS and anxiety. In this case, the anxiety is related to if not caused by the disease and is not the cause of the disease. I know my body and my emotions. I don't believe that I am particularly anxious. And I certainly don't believe that anxiety is causing my symptoms, not even a little bit. But, with the likely chemical connection, it's time I got the insurance company to pay for the anti-anxiety medications the doctor wants me to try. In college I had heard about the Ride for Kids and wanted to go to an event. But, I didn't yet feel comfortable asking people for money. In 1999 I saw something about an event in Chicago. I told my mom about it and she got excited. I thought about it some, but forgot about it more than I remembered it. That year, as we rolled into St. Charles, IL there was a little family huddled under an umbrella.The narrow street in the old downtown just off the Fox River was lined with people for a few blocks. But this family was off a little bit and very obvious. They held a sign and I glanced up to read it, "Ally wanted to be here to thank you,..." As I looked back at the road I was ticked. I thought I knew what the rest of the sign said. But as I looked back up, I read the rest of the sign, "...but she's at camp because of you!" "Oh for crying out loud, I need to see where I'm going!" That little family hooked me. I haven't been the same since. There have been highlights every year. One year I got the father in law to go along. One of the speakers at the celebration after the ride was none other than my brother-in-law's doctor when he was at St. Jude's for a brain tumor as a toddler. I have never been happier to sit off to the side and let my father in law talk to someone. (He does that when we are out riding together.) Then last year, something happened that I don't think I shared here. Dominic, my brother in law finally passed away. He lived with the after effects of the cancer treatments. He had a series of strokes and other significant traumas. Finally, at the chronological age of 31, the mental age of 4 (due to the treatments and effects) his little body gave up. Please go to the link here: http://pbtf.convio.net/site/TR/2016RideforKids/General?px=1216645&pg=personal&fr_id=2645 |
AuthorI'm a Husband, father, and child of God. My favorite places to be are in the arms of my girls or in the saddle. Archives
August 2021
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