Is anyone still checking on Now and Zen? I haven't died, but I'm working on it. << joke
Yeah, this is awkward. First things first- Do NOT set up a GoFundMe for me. Doing so would cause problems that I really do not want to waste time dealing with.
It took a little more than a year between when I applied for medicaid and my first doctor's appointment. I've suspected for months, and last Monday my doctor said I have ALS. Yeah that ALS. I still have appointments lined up, and things to do, but there it is. My wife knows (bless her beautiful heart), but I have not told anyone else. I am not close with my family, but I do not want to alarm them in case this turns out to be something that is somehow equally disabling, but less deadly.
So I thought maybe if anyone out there wants to interact with me through comments, that might be cathartic. I can still walk, and I'm able to use my arms for most things. I cannot speak, and have a helluva time not choking. I can just barely move my tongue. I never knew just how much we rely on our tongues.
I've been calm about all of this. I have been preparing my mind for this news for some time. Every now and again, I think, 'Wow, can this be real?' It's real. I don't know anything about the future, so I can't answer those kinds of questions. But, I do know what it is like being inside the body while losing control of it. I am more than willing to answer those kinds of questions. My mind is intact, and this could be fun. I have a twisted sense of humor, so you'll need one too!
I know that what I've written here, seems a bit random with what I chose to say, but I chose here to converse about it because you know me well enough to interact with me, but not well enough to freak out about what I'm going through and the end result.
The good news is that I'll be dead before the NL adopts the DH! -I told you, we need a twisted sense of humor here!
I'm really sorry to hear that, hopefully now that the doctors know, you and they can fight it. I don't really know a whole lot about that but I know that this isn't good news :(
ReplyDeleteThanks Billy. Next Thursday is my next appointment. If I learn anything new, I'll post here. Hugs!
DeleteI'm sorry to hear about this diagnosis. I know there have been some positive medical advances in treating this, but the fact remains it's still a tough hand you've been dealt. Keeping you in my thoughts.
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DeleteThank you my time traveling friend.
So sorry to hear about your diagnosis. Take comfort in knowing that we're all here if you need a space to talk.
ReplyDeleteThanks Adam. I mean that. I've told very few people, and the looks on their faces were of stunned horror. It's hard to know what to say because my news makes people sad. -And these are people that I encounter day to day. They've known almost a year that my ability to speak was in serious decline. It's still a shock.
DeleteI'm sorry about the diagnosis. I have no idea what you're going through, nor your wife, but I do know what I went through with my cancer. If you wish to communicate with me, please feel free to do so.
ReplyDeleteThank you. I will keep your offer in mind, and if you should feel compelled to share a 'heads up' bit of info, please feel free to do so.
DeleteWow I don't know what to say. I'm sure it wasn't easy (from an emotional mental point of view, not necessarily in the physical sense) for you to make this announcement post. In my own inner mumbling and thoughts I am reminded of a quote from Doctor Who that is popular among it's fandom "We are all stories in the End. Just make it a good one eh?"
ReplyDeleteThank you. Captain Kirk quoting Dr. Who (with a curly W no doubt), that is indeed a good story! Hi-5!
DeleteI'll send an email but just know that you and Zip are in my thoughts. Many good words of encouragement have been offered here. This is a good and caring community. I'm not one to make light of any situation so serious as yours. Your sense of humor is strong and with that, I'm surprised you haven't begun a Gehrig collection. ;) Thanks for sharing your story and please, keep us posted as you are able. We are pulling for you!
ReplyDeleteGood timing Julie! I needed a distraction. I am filling out DNR and Power of Attorney forms at this moment. Tomorrow I see the neurologist, and I am a bit nervous. If he agrees that this is ALS, I do think a Lou Gehrig collection will be in order. I don't want to unrealistic, but a part of me is holding out hope that this is not something as cruel as ALS. Hugs & Thank you for leaving a message!
Deleteвторое медицинское мнение When your website or blog goes live for the first time, it is exciting. That is until you realize no one but you and your.
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