{"id":1410,"date":"2017-12-10T06:33:47","date_gmt":"2017-12-10T12:33:47","guid":{"rendered":"https:\/\/journey.jayctheriot.com\/?p=285"},"modified":"2017-12-10T06:33:47","modified_gmt":"2017-12-10T12:33:47","slug":"2017-december-10th-in-process-review","status":"publish","type":"post","link":"https:\/\/jayscafe.net\/?p=1410","title":{"rendered":"2017 December 10th, In-process Review"},"content":{"rendered":"

Friday, my ITB was increased to ~175 mcg\/day.\u00a0 I’m typing this about 48 hours after the increase.\u00a0 I was fairly active yesterday.\u00a0 I did have to take a 2-hour nap mid-day, but I was able to do a bit of shopping, without my wheelchair.\u00a0 My muscles did fatigue, but as long as I kept moving them, I was OK.<\/p>\n

I met up with a friend at a flea market and talked to him a few minutes.\u00a0 Standing still hurt me.\u00a0 The market was hot and my muscles fatigued from standing still.\u00a0 Once I returned to my auto and relaxed a few minutes, I was fine to continue on with life.<\/p>\n

The “Why?” is resurfacing again.\u00a0 We are treating symptoms.\u00a0 We did have a discussion about\u00a0 it with the PA.\u00a0 The only place we didn’t check for MS is in the thoracic portion of the spine.\u00a0 Additionally, he said I didn’t have other markers of MS.\u00a0 I don’t know what the “markers” he referred to are.\u00a0 So I am left adrift in thought.\u00a0 I have to state that I query my mental state frequently.\u00a0 To the point of questioning if anything is real.<\/p>\n

What we know now:<\/p>\n

My muscles fail to relax.\u00a0 This seems to be the core of the issue.\u00a0 The assumption is that there is a genetic defect in the way my nerves operate.\u00a0 The concept of it being genetic is terrifying my kids, for good reason.<\/p>\n

I have osteopenia which is the precursor to osteoporosis.<\/p>\n

I have osteoarthritis which causes a great deal of pain in various joints.\u00a0 This pain is more of an aggravation.\u00a0 My wife bought me a larger wedding ring so that I can wear something.\u00a0 The ring moves from finger to finger depending on how swollen my fingers are and which fingers are swollen.\u00a0 I love having my ring.<\/p>\n

I have an acute phase that destroys me physically as well as mentally.\u00a0 I have tried very hard to learn the stages of the acute phase so that I can tell early when something is coming on. This is, loosely, what I have:<\/p>\n

Stage 1 (2-4 hours):<\/strong><\/p>\n

    \n
  1. A sensation of heat moves about my person like a cloud.\u00a0 There is no rhyme or reason to it.\u00a0 However, it seems that there is only one location at any given time that has this sensation.<\/li>\n
  2. The palms of my hands and feet feel like they are on fire.\u00a0 This sensation can extend up the appendages toward the main body.\u00a0 The usually don’t extend past the knees or elbows.<\/li>\n
  3. The muscles in my face are drawn taught.\u00a0 This is generally on my left cheek, but has been as much as my entire face<\/li>\n<\/ol>\n

    Stage 2 (2-4 hours):<\/strong><\/p>\n

      \n
    1. My muscles tremble.\u00a0 Generally this is everywhere from my neck below.\u00a0 It is not generally externally noticeable.<\/li>\n
    2. If I am relaxed, half-awake, I can feel minute spasms throughout my body.\u00a0 This is the most interesting feeling of all.\u00a0 The sensation is almost like having a hundred mice or rats run across your body.\u00a0 Where their feet contact, you have a small spasm.<\/li>\n
    3. I begin to lose focus and my cognitive skills are diminished.\u00a0 My external mood is affected.\u00a0 I want to cocoon myself from the world.<\/li>\n
    4. I begin to feel fatigued.<\/li>\n
    5. I cannot stay still.\u00a0 I’ve got to keep my arms and legs moving.<\/li>\n<\/ol>\n

      Stage 3 (4-6 hours):<\/strong><\/p>\n

        \n
      1. Cramps in various muscle groups begin.<\/li>\n
      2. Abdominal wall buckles.\u00a0 I don’t know how else to describe this.\u00a0 It’s a cramp-like sensation, but it feels more like the wall of muscle folds in on itself.\u00a0 It will take your breath away.<\/li>\n
      3. Externally noticeable spasms start.\u00a0 Usually in singular or only a few muscle groups.\u00a0 My arm will launch off my body.\u00a0 I’ll kick a dog off of me he\/she is laying on my legs.<\/li>\n
      4. Even typing becomes difficult.\u00a0 I’ve made some blog entries during this stage.\u00a0 The are short statements and don’t give a lot of information.\u00a0 They are more cries for help or just trying to document the pain that I’m going through.<\/li>\n
      5. Muscles sometimes get strained during the cramps and minor spasms.<\/li>\n<\/ol>\n

        Stage 4 (12-36 hours):<\/strong><\/p>\n

          \n
        1. Evil is here.\u00a0 Full body spasms.\u00a0 These usually will pull muscles in several locations throughout my body.\u00a0 The remnants of a full body spasm drop me for a week or two while the muscles recover.<\/li>\n
        2. I lose consciousness, thankfully, during some of the greater spasms.<\/li>\n
        3. Time is irrelevant.\u00a0 I have had been in this stage for 24-48 hours in the past.\u00a0 Your focus is on the “now.”\u00a0 There is no thought given to anything else.\u00a0 You just want this stage to stop.<\/li>\n<\/ol>\n

          Recovery (1-2 weeks)<\/strong>:<\/p>\n

            \n
          • Rest.\u00a0 Depending on what stage the acute phase stops at, you are completely exhausted.\u00a0 Muscles are fatigued.\u00a0 You pray “Thanks” that you have some freedom from the disease for a few.<\/li>\n
          • Heating pads.<\/li>\n
          • TENS unit.<\/li>\n
          • Food.\u00a0 You get extremely hungry.<\/li>\n<\/ul>\n

            Note:\u00a0 I have gone from baseline to the final stage in under 20 minutes.\u00a0 Times are generalizations.<\/strong><\/p>\n

            The rapid acceleration through the stages occurs when I do to much and I artificially trigger the event.\u00a0 For example, this morning at Mass.\u00a0 I wanted to get a shot of the Advent Candles being lit.\u00a0 I forgot they were done before Mass.\u00a0 I ran to get my camera and got the shot.\u00a0 I didn’t make it through the first reading.\u00a0 I left, got home and took my meds.<\/p>\n

            You may have noticed that the frequency of the acute events are about every 3 days where the recovery time is from 1-2 weeks.\u00a0 This is where we developed our theory that prior to the overdose, my muscles never recovered from the previous event.\u00a0 Successive acute stages only added agony to pain.\u00a0 Since we have achieved a measure of success in lowering the veracity of the acute stage, my muscles have some chance of healing (if I’m careful) thus lowering the affects of the acute phase.\u00a0 The process has a critical point of no return.\u00a0 We have been searching for ways to avoid that critical point.<\/p>\n

            My wife and I have learned that taking a cocktail of Zanaflex, oral Baclofen, Lortab and Horizant kill the progression of the stages.\u00a0 We have successfully done this 3 times. However, my body has a tendency to want to return to the acute phase more regularly when we stop it.\u00a0 It is almost like my body wants to go into spasm, but we are depriving it the ability to do so.<\/p>\n

            I am exceedingly thankful that we have found a way to stop from progressing to the final stage.\u00a0 We are working on extending my good days.\u00a0 Before the increase, I would have a mix of 3 bad days to 1 good day.\u00a0 We increased the ITB Friday with hopes of extending the number of good days.\u00a0 The last 48 hours indicates that we may have made progress.<\/p>\n

            Rest is extremely important.\u00a0 I have to rest the muscles or I will fatigue them and trigger the onset of the acute phase.\u00a0 Sitting and relaxing don’t seem to be sufficient all the time.\u00a0 Riding in my car, sitting in my recliner, and reclining as a passenger with my legs elevated seem to help.\u00a0 Sleeping helps the most.\u00a0 Sometimes the relaxation must be chemically helped.<\/p>\n

            There are multiple components that we are fighting.\u00a0 Muscular, Neurological, Psycho-social and Spiritual.\u00a0 All four aspects seem to play together to kick my butt.\u00a0 When we do warfare, we have to address Neurological as well as Muscular issues.\u00a0 Psycho-social and Spiritual must be addressed, but in a different way.\u00a0 You can take a pill for depression, but that is not the cure, only the treatment.<\/p>\n

            I went from being a rather active producer as well as a consumer to not even really being able to consume.\u00a0 My life took a serious down-shift into ultra-low gear.\u00a0 My desire to be a producer must be addressed, less I keep injuring myself trying to do things.<\/p>\n

            Of all aspects, I find the psycho-social is the hardest to address.\u00a0 I don’t know how to handle it successfully.\u00a0 I have always been a fixer.\u00a0 I want to fix the world.\u00a0 The truth is, I can’t even fix myself.<\/p>\n

            Well, I think I may have gotten everything out that we know about my condition.\u00a0 I would really like to know what I have and why I have it.\u00a0 Not only for myself, but to alleviate the stress on my children.<\/p>\n

            Thanks, and God Bless,<\/p>\n

            Jay C. Theriot<\/p>\n","protected":false},"excerpt":{"rendered":"

            Friday, my ITB was increased to ~175 mcg\/day.\u00a0 I’m typing this about 48 hours after the increase.\u00a0 I was fairly active yesterday.\u00a0 I did have to take a 2-hour nap mid-day, but I was able to do a bit of shopping, without my wheelchair.\u00a0 My muscles did fatigue, but as long as I kept moving […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9,35],"tags":[],"class_list":["post-1410","post","type-post","status-publish","format-standard","hentry","category-condition-summary","category-understanding"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/1410","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=1410"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/1410\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1410"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1410"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1410"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}