This post is going to be mostly an update on what’s going on in my life. Unfortunately I haven’t meant able to post in a while because of my healthcare issues as well as being busy with a number personal things. I’ve also had a lot more trouble typing because of weakness and pain in both of my hands. I recently got a copy of Dragon Dictate software, which I’m using to write this article. I have experience with Dragon from when I was practicing medicine, and it makes it a lot easier for me to write without getting tired.
I have seen a number of doctors, and have basically ruled many diseases, including lupus and Sjogren’s syndrome. So far, my tests with neurology has been mostly normal except for one ‘demyelinating’ lesion on an MRI of my brain, which has not changed in over six months. While this does not necessarily rule out the presence of any diseases, it makes it less likely that what I have is certain things. Unfortunately, we still haven’t ruled out multiple sclerosis, and my symptoms are beginning to look more and more like it. I currently have significant weakness on the left side of my body, to the point that I am using a four wheel walker to get around. I’m am also going to be getting an electric wheelchair in the next few weeks. I recently got hearing aids, and I use them full-time to better understand speech. While I wish I didn’t need any of these devices to help me function, they do improve my life and make it easier for me to do the things that I love. Overall, I’m trying to keep a pretty good outlook on my situation. I wish I had a diagnosis, but I’m probably going to have to wait a while for that. I realize that I don’t have any control over what is going on, which is making it easier to let go somewhat.
I am currently living in an extended stay hotel that is wheelchair accessible. This summer, we plan to move to Denver so that I can get around using mass-transportation more easily. I also have a number of disability support groups that I go to up in Denver, and it will be easier for me to get to these once we move. We still have a lot to figure out with our move, but are going to start working on that once we are settled.
One random aside, I’m going to be deleting my Facebook account as they have decided to start charging when you try to send messages to someone you’re not friends with. It seems to me that the movement toward social media is making our lives a lot more public and therefore making it easier to market to us. I’m getting more and more tired of rampant capitalism, and have decided to no longer participate in sites such as Facebook. If this makes a paranoid, then so be it. I can honestly say that Facebook has not improved my life at all, and is just another thing it seems like I have to deal with. With everything going on in my life right now that’s the last thing I need.
I have all sorts of thoughts for more intellectual articles, and I hope to have another one written soon. I’m mostly happy with how well Dragon Dictate has worked for writing this article, and it is likely that I will be able to write more often in the future. I also hope that it will help me finish the novel that I’m working on right now. I’m going to get a contact page up on my blog soon, but until then if you leave comments on this post I will respond to them when I am able.
2 thoughts on “Update”
I somehow came across your blog looking for an integrative doctor for my children. I really think you have late-stage Lyme disease. Have you been to a Lyme-literate physician for a diagnosis? NOT an Infectious disease doc, a Rheumatologist, or a Neurologist – you want a doctor that has been trained by ILADS the International Lyme and Associated Diseases Society. Watch the documentary ‘Under Our Skin’ and read the book, ‘Cure Unkown’. Do not rely on laboratory testing to rule out Lyme disease – they are highly unreliable, especially in patients with late disease who are very, very ill.
Thank you for your post. I am a LLMD (well LLDO) and have been trained by ILADS. I thought it was lyme disease for a while and was under treatment for a while as well, but it made no difference.