{"id":1396,"date":"2021-07-04T01:30:15","date_gmt":"2021-07-03T22:00:15","guid":{"rendered":"https:\/\/thefibro-lupusbutterfly.com\/?p=1396"},"modified":"2021-07-04T01:30:19","modified_gmt":"2021-07-03T22:00:19","slug":"day-by-day","status":"publish","type":"post","link":"https:\/\/thefibro-lupusbutterfly.com\/?p=1396","title":{"rendered":"Myelofibrosis and Fibromyalgia"},"content":{"rendered":"\n<p>Dealing with Fibromyalgia and taking care of your spouse who has Myelofibrosis can be complicated, but taking things one day at a time; one moment at a time, is the best approach.\u00a0<\/p>\n<p>Seven years ago my husband was diagnosed with <a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/myelofibrosis\/symptoms-causes\/syc-20355057\" target=\"_blank\" rel=\"noopener\">MDS-Myelodysplastic Syndrome<\/a>. Four years into that, a bone marrow biopsy changed the diagnosis to include\u00a0<a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/myelofibrosis\/symptoms-causes\/syc-20355057\" target=\"_blank\" rel=\"noopener\">MF-Myelofibrosis<\/a>. This has been quite a road we&#8217;ve been on! Our family played bluegrass Gospel music through most of those years. <a href=\"https:\/\/www.theworthing10s.com\/who-we-are\/\" target=\"_blank\" rel=\"noopener\">Click here for more info on our family band.<\/a><\/p>\n<p>Two years ago, talk of a <a href=\"_wp_link_placeholder\" data-wplink-edit=\"true\">Bone Marrow Transplant<\/a> began. A failed clinical trial in 2019 and Covid-19 later, and we are now on that path.\u00a0<\/p>\n<p>On June 14, 2021 he began <a href=\"https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/treatment-types\/chemotherapy\/chemotherapy-side-effects.html\" target=\"_blank\" rel=\"noopener\">Chemotherapy<\/a> to prepare for the transplant. It was a rough week, but honestly, the week after and the week after that has been worse.\u00a0 Today is July 3-18 days after his first dose. I am currently sitting in a Cancer Hospital in the city while my husband is being treated for <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC7120136\/\" target=\"_blank\" rel=\"noopener\">Neutropenic fever<\/a>. We have been here for 3 days so far without an end in sight.<\/p>\n<p>(Being a holiday weekend, I made arrangements for our oldest daughter to take care of our youngest three still at home. She is planning to make as memorable a weekend as possible for them.)\u00a0<\/p>\n<p>My husband is still running a low grade fever and coughing non-stop. They have tried everything. He has two inflamed lumps under his arms they have been treating with multiple antibiotics. He is worn out, constantly needing transfusions and wanting to be at home. My heart hurts for him. I fear this is going to be a long summer&#8230;<\/p>\n<p>As a Fibro sufferer, I have had to really take care of myself through all of this.<\/p>\n<p>Easier said than done!\u00a0<\/p>\n<p>I need to eat healthy at the cafeteria, walk the halls often, rest when I can, and not let the stress of concern affect me. I have to give each little thing over to God and take it day by day. It takes practice, but it is the best way for me to manage the pain I constantly have in my joints and body (an occasional Aleve helps, too).<\/p>\n<p>I always think that how I feel is nothing compared to what my husband is going through. While this is true, I still have a medical condition and need to take care of myself so I can take care of him.<\/p>\n<p>He needs me to help him because I need him to help me!<\/p>\n<p><em>One day at a time; one moment at a time.\u00a0<\/em><\/p>\n<p>That is my &#8220;road to transplant&#8221; motto.<\/p>\n<p>Blessings to you-The Fibro Momma of Ten<\/p>\n ","protected":false},"excerpt":{"rendered":"<p>Dealing with Fibromyalgia and taking care of your spouse who has Myelofibrosis can be complicated, but taking things one day at a time; one moment at a time, is the best approach.\u00a0 Seven years ago my husband was diagnosed with MDS-Myelodysplastic Syndrome. Four years into that, a bone marrow biopsy changed the diagnosis to include\u00a0MF-Myelofibrosis.&hellip; <a href=\"https:\/\/thefibro-lupusbutterfly.com\/?p=1396\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">Myelofibrosis and Fibromyalgia<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"ngg_post_thumbnail":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[1],"tags":[65,16,50,66],"class_list":["post-1396","post","type-post","status-publish","format-standard","hentry","category-uncategorized","tag-bone-marrow-transplant","tag-fibromyagia","tag-myelofibrosis","tag-neutropenic-fever","without-featured-image"],"aioseo_notices":[],"aioseo_head":"\n\t\t<!-- All in One SEO 4.9.10 - aioseo.com -->\n\t<meta name=\"description\" content=\"Dealing with Fibromyalgia and taking care of your spouse who has Myelofibrosis can be complicated, but taking things one day at a time; one moment at a time, is the best approach. 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Four years into that, a bone marrow biopsy changed the diagnosis to include MF-Myelofibrosis.","twitter:image":"https:\/\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2026\/04\/cropped-10000500251.jpg"},"aioseo_meta_data":{"post_id":"1396","title":null,"description":null,"keywords":null,"keyphrases":null,"primary_term":null,"canonical_url":null,"og_title":null,"og_description":null,"og_object_type":"default","og_image_type":"default","og_image_url":null,"og_image_width":null,"og_image_height":null,"og_image_custom_url":null,"og_image_custom_fields":null,"og_video":null,"og_custom_url":null,"og_article_section":null,"og_article_tags":null,"twitter_use_og":false,"twitter_card":"default","twitter_image_type":"default","twitter_image_url":null,"twitter_image_custom_url":null,"twitter_image_custom_fields":null,"twitter_title":null,"twitter_description":null,"schema":{"blockGraphs":[],"customGraphs":[],"default":{"data":{"Article":[],"Course":[],"Dataset":[],"FAQPage":[],"Movie":[],"Person":[],"Product":[],"ProductReview":[],"Car":[],"Recipe":[],"Service":[],"SoftwareApplication":[],"WebPage":[]},"graphName":"","isEnabled":true},"graphs":[]},"schema_type":"default","schema_type_options":null,"pillar_content":false,"robots_default":true,"robots_noindex":false,"robots_noarchive":false,"robots_nosnippet":false,"robots_nofollow":false,"robots_noimageindex":false,"robots_noodp":false,"robots_notranslate":false,"robots_max_snippet":null,"robots_max_videopreview":null,"robots_max_imagepreview":"large","priority":null,"frequency":null,"local_seo":null,"breadcrumb_settings":null,"limit_modified_date":false,"ai":null,"created":"2023-07-01 19:35:55","updated":"2026-02-18 21:30:36","seo_analyzer_scan_date":null},"aioseo_breadcrumb":"<div class=\"aioseo-breadcrumbs\"><span class=\"aioseo-breadcrumb\">\n\t\t\t<a href=\"https:\/\/thefibro-lupusbutterfly.com\" title=\"Home\">Home<\/a>\n\t\t<\/span><span class=\"aioseo-breadcrumb-separator\">&raquo;<\/span><span class=\"aioseo-breadcrumb\">\n\t\t\t<a href=\"https:\/\/thefibro-lupusbutterfly.com\/?cat=1\" title=\"Living Daily with Chronic Invisible Illness\">Living Daily with Chronic Invisible Illness<\/a>\n\t\t<\/span><span class=\"aioseo-breadcrumb-separator\">&raquo;<\/span><span class=\"aioseo-breadcrumb\">\n\t\t\tMyelofibrosis and Fibromyalgia\n\t\t<\/span><\/div>","aioseo_breadcrumb_json":[{"label":"Home","link":"https:\/\/thefibro-lupusbutterfly.com"},{"label":"Living Daily with Chronic Invisible Illness","link":"https:\/\/thefibro-lupusbutterfly.com\/?cat=1"},{"label":"Myelofibrosis and Fibromyalgia","link":"https:\/\/thefibro-lupusbutterfly.com\/?p=1396"}],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p8ZH8C-mw","jetpack-related-posts":[{"id":1304,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1304","url_meta":{"origin":1396,"position":0},"title":"Loving Someone with Cancer When You Have Fibromyalgia","author":"fibropage1","date":"June 25, 2019","format":false,"excerpt":"My husband has cancer of the bone marrow called Myelofibrosis. He has been receiving blood transfusions for over a year. He was receiving them about every 14-16 days until this past winter when his body began requiring them about every 9-12 days; 2 units each time.\u00a0 As a Fibromyalgia sufferer,\u2026","rel":"","context":"In \"Fibromyalgia\"","block_context":{"text":"Fibromyalgia","link":"https:\/\/thefibro-lupusbutterfly.com\/?tag=fibromyagia"},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":1404,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1404","url_meta":{"origin":1396,"position":1},"title":"Drawing a Line","author":"Fibro Momma of 10","date":"April 25, 2023","format":false,"excerpt":"This website has been sorely neglected for a host of reasons...and I apologize for that. The sabbatical I had to take was mostly in part to my husband, who was diagnosed with blood cancer and underwent a bone marrow transplant in the fall of 2021.\u00a0\u00a0 Having to deal with my\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":1199,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1199","url_meta":{"origin":1396,"position":2},"title":"What NOT to say when you have Fibromyalgia","author":"fibropage1","date":"November 29, 2018","format":false,"excerpt":"I have Fibromyalgia and fight the pains in my body 24\/7. It is a seemingly never-ending whirlwind of pain and labeled an invisible illness because those of us who have it look pretty darn good on the outside, but on the inside we are battling those pains through the smiles\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":1535,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1535","url_meta":{"origin":1396,"position":3},"title":"When Lupus Hits Hard","author":"Fibro Momma of 10","date":"July 8, 2025","format":false,"excerpt":"Back in 2015, I was diagnosed with Fibromyalgia and then in 2016, I had a Lupus diagnosis with positive ANA and Anti-dsDNA testing, along with the classic Lupus symptoms, but I honestly decided that was more than I needed to deal with because, at that time, my husband had blood\u2026","rel":"","context":"With 1 comment","block_context":{"text":"With 1 comment","link":"https:\/\/thefibro-lupusbutterfly.com\/?p=1535#comments"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2025\/07\/facebook-595x336.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2025\/07\/facebook-595x336.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2025\/07\/facebook-595x336.jpg?resize=525%2C300&ssl=1 1.5x"},"classes":[]},{"id":1362,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1362","url_meta":{"origin":1396,"position":4},"title":"Handling Life with Fibromyalgia","author":"fibropage1","date":"February 12, 2020","format":false,"excerpt":"I am a sufferer of Fibromyalgia...I have had a pretty crazy winter so far and this blog was not something I could keep up with. Let me backtrack... I am a mother of ten children, wife to a wonderful husband of almost thirty years. Last fall, my last two sons\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":1119,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1119","url_meta":{"origin":1396,"position":5},"title":"Varying Hormone Levels in Your Home and Fibromyalgia","author":"fibropage1","date":"July 23, 2018","format":false,"excerpt":"I deal with a lot of different personalities and hormone levels at my house. Why?? Well, for starters I have ten children from ages 27 down to 9 and six still live at home. Each one is uniquely made and each one goes through his or her own issues at\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]}],"jetpack_likes_enabled":true,"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=\/wp\/v2\/posts\/1396","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1396"}],"version-history":[{"count":0,"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=\/wp\/v2\/posts\/1396\/revisions"}],"wp:attachment":[{"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1396"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1396"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thefibro-lupusbutterfly.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1396"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}