{"id":654,"date":"2022-08-31T17:01:14","date_gmt":"2022-09-01T00:01:14","guid":{"rendered":"https:\/\/seedsproutblossom.com\/?p=654"},"modified":"2022-08-31T17:01:14","modified_gmt":"2022-09-01T00:01:14","slug":"post-hsct-month-6-musings-symptoms","status":"publish","type":"post","link":"https:\/\/seedsproutblossom.com\/?p=654","title":{"rendered":"Post HSCT &#8211; Month 6 Musings &#038; Symptoms"},"content":{"rendered":"<figure id=\"attachment_658\" aria-describedby=\"caption-attachment-658\" style=\"width: 2560px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-658\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-scaled.jpeg\" alt=\"Dinner with Kandace &amp; Bob\" width=\"2560\" height=\"1440\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-scaled.jpeg 2560w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-300x169.jpeg 300w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-1024x576.jpeg 1024w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-768x432.jpeg 768w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-1536x864.jpeg 1536w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-2048x1152.jpeg 2048w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/0B4E1EF3-29A9-4DE3-A346-1057D95CA9B5-1320x743.jpeg 1320w\" sizes=\"auto, (max-width: 767px) 89vw, (max-width: 1000px) 54vw, (max-width: 1071px) 543px, 580px\" \/><figcaption id=\"caption-attachment-658\" class=\"wp-caption-text\">We are lucky to live near one of my HSCT cohort patients and his wife &#8211; Bob &amp; Kandace. We got together for dinner a few weeks ago, so sweet!<\/figcaption><\/figure>\n<p>I am way behind my own arbitrary schedule for writing this blog post. I am now six months post treatment, six months through the roller coaster first year. This is the middle of the tunnel, the part of just getting through it. I think that&#8217;s why this has been so hard to write. There is no new news, no big breakthroughs, no major changes, nothing sexy to talk about.<\/p>\n<p>My original goal was to do a post every two weeks. One post that was musings (thoughts on this HSCT journey) and one that was a detailing of symptoms. So, I&#8217;m conflating the two into one this month.<\/p>\n<p><strong>Legs and walking:<\/strong> I hear a vinyl record skipping over a scratch in the grooves, playing the same lyric over and over.\u00a0 That lyric is spasticity, and it is getting as old for me as I imagine it is for you, the reader. \u00a0The spasticity in my right leg continues to be intense and difficult to describe. My massage therapist is trying to identify which specific muscles are the biggest complainers, the biggest overreactive players. \u00a0To me it feels like a chain reaction that starts in the upper thigh, crosses my knee, continues down my calf and echoes all the way through my foot. \u00a0The muscles system itself doesn\u2019t work that way, but my physical therapist has explained that there is a neurological chain that does map to my experience.<\/p>\n<p><iframe loading=\"lazy\" title=\"Month 6 post HSCT - walking\" width=\"525\" height=\"295\" src=\"https:\/\/www.youtube.com\/embed\/JBfG9yupgUg?start=3&#038;feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>We have identified two muscles in the thigh that are the big bullies in this system \u2013 gracilis and adductor longus. I have an appointment with my physiatrist for Botox injections into those muscles to see how far down the chain it will impact.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-667\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/thigh-muscles-1.png\" alt=\"\" width=\"659\" height=\"729\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/thigh-muscles-1.png 659w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/thigh-muscles-1-271x300.png 271w\" sizes=\"auto, (max-width: 659px) 100vw, 659px\" \/><\/p>\n<p><strong>Side notes on Botox:<\/strong> though commonly understood to be used to make your lips fuller, your face wrinkles go away, and overall freeze your face into an unmoving glamour mask against aging, it is also very useful with overactive muscles.\u00a0 Using it, however, is a careful balancing act between relaxing the muscles just enough to be able to use the legs (or arms, or bladder, etc) more freely and making the muscles too weak to be useful at all.\u00a0 About a year ago I had Botox into my right arm bicep which helped that muscle unfold and become more comfortable.\u00a0 It also made my arm and hand too weak to do much else.\u00a0 With the legs, this dance is even more critical.\u00a0 Too much and I won\u2019t be able to walk.\u00a0 Thankfully it only lasts three months.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-666\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox.jpg\" alt=\"Botox\" width=\"2048\" height=\"1365\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox.jpg 2048w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox-300x200.jpg 300w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox-1024x683.jpg 1024w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox-768x512.jpg 768w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox-1536x1024.jpg 1536w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/Botox-1320x880.jpg 1320w\" sizes=\"auto, (max-width: 767px) 89vw, (max-width: 1000px) 54vw, (max-width: 1071px) 543px, 580px\" \/><\/p>\n<p>Because of spasticity, my hips and low back hurt. Both sacroiliac joints and the muscles that reach out from there around the outsides of my hips ache night, and day. \u00a0I am retraining my body to use my gluteus muscles (asleep and weak for years) and my adductors and abductors in the jobs they were meant to do with walking and stabilization.\u00a0 This retraining includes reminding my hips of the appropriate position to support everything else \u2013 tucked under.\u00a0 This retraining also has the side \u201cbenefit\u201d of increasing overall pain in the area.\u00a0 I honestly don\u2019t know if this is ultimately a good thing on the way to less pain as the muscles wake up and work out the kinks (my hope) or a more chronic problem that will need another intervention at some point.<\/p>\n<p>I am always looking for new tools to decrease pain and increase strength.\u00a0 I recently purchased a vibration plate that has a good track record among other people with MS for decreasing spasticity and hip pain.\u00a0 I am learning how to use this, and it seems positive so far.\u00a0 More to report later.<img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-669\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458.jpeg\" alt=\"vibration plate\" width=\"2560\" height=\"1440\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458.jpeg 2560w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458-300x169.jpeg 300w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458-1024x576.jpeg 1024w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458-768x432.jpeg 768w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458-1536x864.jpeg 1536w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458-2048x1152.jpeg 2048w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/975B816D-17E0-43B5-B77F-5361A1D2610D-scaled-e1661989876458-1320x743.jpeg 1320w\" sizes=\"auto, (max-width: 767px) 89vw, (max-width: 1000px) 54vw, (max-width: 1071px) 543px, 580px\" \/><\/p>\n<p>There is a difference between my outside presentation and my inside experience. I often look like I&#8217;m going to fall. I stumble and lurch, I am entirely ungraceful. But I don&#8217;t fall. The work I&#8217;ve been doing with physical therapy has created stability in my core muscles. From my shoulders to my ankles there is a strength I feel with every movement. \u00a0I am in a holding pattern waiting to reach the end of this tunnel when I shed my spasticity like a snakeskin, Clark Kent becoming Superman; underneath is resilience and steel. \u00a0This underlying strength gives me hope for the future.<\/p>\n<p><strong>Medication update:<\/strong> I am on the highest dose of gabapentin and close to the ceiling with baclofen. \u00a0I think they are helping somewhat, but not a miracle solution.\u00a0 I continue to have a love\/hate relationship with these medications. I am still using pot, mostly at night for sleep. The 6 month mark also means I get to drop one medication, daraprim, the pneumonia prophylaxis.<\/p>\n<p><strong>Arm\/hand:<\/strong> I\u2019m leaving this heading in to remind me that I care and to not abandon hope that this can get better. \u00a0Right now, legs and hip are on fire, and I only have limited time.\u00a0 The squeaky wheel\u2026<\/p>\n<p><strong>Fatigue:<\/strong> Still gone. I am thankful every day that this symptom has resolved.<\/p>\n<p><strong>Bladder:<\/strong> I am still wrestling with some degree of urgency. I&#8217;m not gonna lie, I&#8217;ve had a couple of peeing my pants incidents, thankfully not when I was in public.\u00a0 The game I am playing is to push the boundary of time from the feeling of needing to urinate to going to the bathroom and occasionally, I miss the mark. \u00a0My pelvic floor therapist has some quick phrases for this game; \u201csit still and chill\u201d (slowdown and consciously relax, remind the bladder that it is OK and has room) and \u201ctake five\u201d (take five deep breaths, relaxing everything on the in breath and pull up the pelvic floor on the out breath). \u00a0Work in progress.<\/p>\n<p><strong>Bowel:<\/strong> A little weird. No details here, you wouldn\u2019t want them.\u00a0 It did want to note that I\u2019ve been dealing with bloating which coincides with starting gabapentin.<\/p>\n<p><strong>Hair:<\/strong> My hair is definitely growing back curly, but it was pretty curly before so it is hard to know how much the chemo impacted this.\u00a0 I am at a crossroads of sorts, curious to see what it looks like as it grows and at the same time liking the ease of it being short which would mean a haircut. \u00a0I haven\u2019t reached the haircut point yet.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-662\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-scaled.jpeg\" alt=\"\" width=\"2560\" height=\"1920\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-scaled.jpeg 2560w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-300x225.jpeg 300w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-1024x768.jpeg 1024w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-768x576.jpeg 768w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-1536x1152.jpeg 1536w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-2048x1536.jpeg 2048w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/378D9269-13D5-4162-A4E7-06B3B8FB22CC-1320x990.jpeg 1320w\" sizes=\"auto, (max-width: 767px) 89vw, (max-width: 1000px) 54vw, (max-width: 1071px) 543px, 580px\" \/> <img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-663\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-scaled.jpeg\" alt=\"\" width=\"2560\" height=\"1920\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-scaled.jpeg 2560w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-300x225.jpeg 300w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-1024x768.jpeg 1024w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-768x576.jpeg 768w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-1536x1152.jpeg 1536w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-2048x1536.jpeg 2048w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/D7912F18-3AC1-45D9-BDCD-A367E55E4089-1320x990.jpeg 1320w\" sizes=\"auto, (max-width: 767px) 89vw, (max-width: 1000px) 54vw, (max-width: 1071px) 543px, 580px\" \/> <img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-664\" src=\"http:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-scaled.jpeg\" alt=\"\" width=\"2560\" height=\"1920\" srcset=\"https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-scaled.jpeg 2560w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-300x225.jpeg 300w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-1024x768.jpeg 1024w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-768x576.jpeg 768w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-1536x1152.jpeg 1536w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-2048x1536.jpeg 2048w, https:\/\/seedsproutblossom.com\/wp-content\/uploads\/2022\/08\/B1C75F7A-3FC6-4FC3-8F33-E611512F983A-1320x990.jpeg 1320w\" sizes=\"auto, (max-width: 767px) 89vw, (max-width: 1000px) 54vw, (max-width: 1071px) 543px, 580px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>I am way behind my own arbitrary schedule for writing this blog post. I am now six months post treatment, six months through the roller coaster first year. This is the middle of the tunnel, the part of just getting through it. I think that&#8217;s why this has been so hard to write. There is &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/seedsproutblossom.com\/?p=654\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Post HSCT &#8211; Month 6 Musings &#038; Symptoms&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4,5,32,7],"tags":[8,10,20,18,30,35,19],"class_list":["post-654","post","type-post","status-publish","format-standard","hentry","category-disease-modifying-therapies","category-hsct","category-recovery","category-symptoms","tag-hsct","tag-mexico","tag-multiple-sclerosis","tag-physical-therapy","tag-recovery","tag-spasticity","tag-symptom-management"],"_links":{"self":[{"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=\/wp\/v2\/posts\/654","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=654"}],"version-history":[{"count":8,"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=\/wp\/v2\/posts\/654\/revisions"}],"predecessor-version":[{"id":675,"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=\/wp\/v2\/posts\/654\/revisions\/675"}],"wp:attachment":[{"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=654"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=654"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/seedsproutblossom.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=654"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}