{"id":55,"date":"2017-08-24T07:03:00","date_gmt":"2017-08-24T12:03:00","guid":{"rendered":"https:\/\/journey.jayctheriot.com\/?p=55"},"modified":"2017-08-24T07:03:00","modified_gmt":"2017-08-24T12:03:00","slug":"good-day-and-questions-answered","status":"publish","type":"post","link":"https:\/\/jayscafe.net\/?p=55","title":{"rendered":"Good Day? and Questions Answered"},"content":{"rendered":"

I feel good today.\u00a0 The last, heck I can’t even remember when it started.\u00a0 I have to look back at my notes…<\/p>\n

From Tuesday around noon until Wednesday evening I was pretty debilitated and writhing in pain, or just plain laughing at my condition.\u00a0 Take a pick, they all surface intermittently during an event.\u00a0 I was able to sleep the night, which I find amazing because: 1) I really needed it, and 2) I slept a good part of the day yesterday.<\/p>\n

As I move around and gain wakefulness, I do feel my muscles tense, but I’ve gotten use to them doing that.\u00a0 It’s when they don’t release\/relax the problem gets serious.<\/p>\n

I have a wealth of thanks to give to my on-line support group.\u00a0 You guys are amazing.\u00a0 There are times that I don’t think I could do it without you.\u00a0 There are key personalities that are by me 24\/7, and those people are the rocks on which I lean.\u00a0 But, what astounds me, is my friends from all walks of my life, that either comment or send me a stray private message, or text, to let me know they are reading this blog.\u00a0 A few even suggest that it be published.<\/p>\n

My motivations for this blog are growing.\u00a0 In the beginning, it was to provide me a catharsis, and remains so.\u00a0 My mind is not as healthy as it was and writing it all down helps “release” the pressure, so-to-speak.\u00a0 Secondly, it was to explain to my friends what was going on with me.\u00a0 Frankly, I had never heard of “extreme spasticity” before that day in the doctors office and we still don’t know all the implications of it.\u00a0 We don’t know the “why” or what is causing the spasticity.\u00a0 Our best guess is genetic, which terrifies me that I may have passed it to my daughters.<\/p>\n

However, my motivations are growing.\u00a0 I have been told by a litany of people to keep writing.\u00a0 They look forward to these articles because it helps them realize either that their condition is not-so-bad or that they can better understand what someone they know who has chronic pain is going through.\u00a0 These two reasons amaze and embolden me.\u00a0 To know that my writings and sufferings are benefiting other people.\u00a0 I can think of no higher honor.<\/p>\n

I can’t name the names, because they are manifold.\u00a0 I resisted the urge to say “they are legion.”\u00a0 I haven’t grown that evil, yet :P.\u00a0 Suffice to say, you are highly appreciated.<\/p>\n

I did have a couple of repeated questions that I need to clarify:<\/p>\n

    \n
  1. Why am I a lock-in?\u00a0 Even a short ride in a vehicle causes extreme pain.\u00a0 I believe it is a mixture of a few things.\u00a0 The restriction of the legs doesn’t help.\u00a0 The bouncing of the road triggers spasms which really cause pain.\u00a0 The effort required to get me somewhere, as I can’t drive, someone must take me there.\u00a0 But, probably the most detrimental reason is the inability to know what condition I’m going to be when I arrive at my destination and how long will my stamina allow me to be there.\u00a0 Even being vertical in a wheel chair with the forces pulling down on my legs and neck, I have a short expiration before I either get week or feel intense pain.<\/li>\n
  2. What is the big deal with the med increases?\u00a0 The Baclofen increases to my spine must be taken sparingly.\u00a0 This is a very powerful drug which sedates the spine.\u00a0 The biggest fear is that a rapid increase could render me a sponge or stop my breathing.\u00a0 This requires the drug to be increased in small doses.\u00a0 The drug is administered through a pump which is implanted internally on my abdominal muscles.\u00a0 There is a catheter from the pump under my fatty layers that goes around the left side of my body that continuously feeds the Baclofen to my spinal fluids.\u00a0 Currently, this is an even dispersion at 380 mcg\/day.\u00a0 But, once we hit the desired level, then I can track the behavior of the spasticity.\u00a0 If we detect a pattern, the pump can be programmed to respond to that pattern.\u00a0 However, that is for later.\u00a0 Right now, we are just slowly approaching that unknown dosage.\u00a0 When I get an increase, my spine has to “figure out” how to handle the increase.\u00a0 There is usually a honeymoon period where things are really good.\u00a0 The temptation is to do too much (which triggers a spasmodic event).\u00a0 Then your body adjusts and the ability level decreases.\u00a0 The resultant reality is that with every increase, the behavior of the disease changes and I have no idea what to expect.\u00a0 Meditating helps, even more than pain killers.<\/li>\n<\/ol>\n

    I am thankful that I was able to write all of this.\u00a0 My hands are not killing me at the moment.\u00a0 However, I am going to save more for tomorrow, or in the future, when I can type again.<\/p>\n

    Thanks all of you for reading, commenting, private messaging me, etc.\u00a0 Your existence in my life makes it all doable.\u00a0 I lived most of my life as a loner.\u00a0 I don’t guess I ever really was.<\/p>\n

    Thanks for reading,<\/p>\n

    Jay<\/p>\n

     <\/p>\n","protected":false},"excerpt":{"rendered":"

    I feel good today.\u00a0 The last, heck I can’t even remember when it started.\u00a0 I have to look back at my notes… From Tuesday around noon until Wednesday evening I was pretty debilitated and writhing in pain, or just plain laughing at my condition.\u00a0 Take a pick, they all surface intermittently during an event.\u00a0 I […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-55","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/55","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=55"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/55\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=55"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=55"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=55"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}