I just had a chilling thought:\u00a0 What if this is the new norm?<\/p>\n
Should I move away from discovery and seek acceptance of my new standards of living?<\/p>\n
It has been since the middle of December 2016 since I have been able to exercise free will over my body.\u00a0 This is approaching nine months.\u00a0 And, frankly, other than levels of pain, my physical abilities are not increasing.<\/p>\n
Currently, my limitations prevent me from being gainfully employed.\u00a0 Even the simplest things are challenging.\u00a0 I’ve had 1\/2 a day of mental clarity since December.<\/p>\n
This past Sunday and Monday, I had the largest spasmodic event since the pump was implanted.\u00a0 As I write this, I’m swooning from the affects of one that lasted over a day.\u00a0 I have pulled muscles in several locations in the left side of my body.\u00a0 I have limited sensations in my periphery and my left hand has been on fire since the massive spasm last night at 9 pm.\u00a0 Icing it helps, temporarily.<\/p>\n
My question: Should I be working to accept my current set of limitations?<\/p>\n
Monday I had a doctor’s visit with my neurologist for another Intrathecal Baclofen increase.\u00a0 During the visit, I was informed that our target dosage was no longer 300 (I’m now at 350 mcg\/day).\u00a0 We are setting our target at 750-800.\u00a0 We were trying to do increases every 2 weeks… The longest I’ve lasted was 9 days.\u00a0 We are now going to move at a one-week interval of increases.<\/p>\n
Let me explain what this means:\u00a0 I go in, they adjust my meds that get automatically injected into my spine.\u00a0 My body takes about 2-3 days to adjust to this new level.\u00a0 During this time, I have no clue what my abilities will be as I take it easy.\u00a0 It is not uncommon for me to sleep almost every hour of the 36 hours following the increase.\u00a0 The new level drives my body crazy.<\/p>\n
I recover from the increase and I have a time period where all is good, and I can do limited things.\u00a0 Then, a spasmodic event occurs and I’m down.<\/p>\n
The major affect the increase in ITB has had is the frequency of these events have decrease and the clarity that I have during them has increased…. as well as their length.\u00a0 It seems that the increased levels of ITB have enabled me to better experience my body say it hates me.<\/p>\n
At the rate we are now going, it could easily be another two months before we arrive at the target level.\u00a0 At the desired rate, it would be four months.\u00a0 Do I celebrate the anniversary of my debilitation?<\/p>\n
To say I am mentally exhausted is an understatement.\u00a0 I am absolutely appalled at the media and what is happening in the world around me and yet, I am unable to summon the strength to converse about it.\u00a0 Even the simplest engineering tasks take me an incredibly long time to complete, as I screw more stuff up than fix.<\/p>\n
God is showing me humility.\u00a0 Maybe I should stop fighting and work to accept that this is what I am.<\/p>\n
Thank you for reading.<\/p>\n
God Bless you all,<\/p>\n
Jay<\/p>\n","protected":false},"excerpt":{"rendered":"
I just had a chilling thought:\u00a0 What if this is the new norm? Should I move away from discovery and seek acceptance of my new standards of living? It has been since the middle of December 2016 since I have been able to exercise free will over my body.\u00a0 This is approaching nine months.\u00a0 And, […]<\/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-49","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/49","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=49"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/49\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=49"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}