Wouldn’t that be so nice? If there were actually an entire textbook dedicated to HIBM? One with an index where I could look up what to expect a year, two years or 10 years from disease onset? With chapters like, “How Much Exercise is Okay?” Or, “What is the Role Hormones Play in Disease Progression?”<\/p>\n
<\/p>\n
Because HIBM is so ultra-rare, there are relatively few scientific groups\u00a0in the world working on it . We simply don’t have enough information on HIBM to fill up a textbook. Maybe a thick pamphlet. And though we have some general guidelines and a basic understanding of this disease, what each of us desperately seeks to know is the rate at which our own personal bodies will deteriorate. And no one can tell us that. There is only one line we patients get to read over and over again in terms of statistics and numbers; hard facts. It’s the one that’s been haunting me for these almost 9 1\/2 years: “On average, HIBM leads to severe incapacitation within 10 to 20 years of onset.”<\/em><\/p>\n Tonight, while starting to wind down from a long, busy, active week, I had what I guess I would call an epiphany. I realized that for these last 9 1\/2 years, without conscious awareness, I have been holding my breath. Not to the point of respiratory distress, just to the point of not being able to fully inhale and exhale. In eight months from now, I will officially enter into that feared chronological phase. And yet, though I can’t guarantee it, it appears extremely unlikely that I will fall into that category, the one of “severe incapacitation.” Doesn’t mean I never will. And doesn’t mean I won’t even within 20 years. It simply means that at the 10 year mark- the one I’ve been dreading all along, the one I can just barely make out in the distance- I will not be where I so desperately feared I would be, back when this all started.<\/p>\n Let me tell you\u00a0what “severe incapacitation” has meant to me all these years. The vision is one of\u00a0me sitting in a wheelchair with my hands folded on my lap, needing to have someone feed me and having to use a water bottle with an extra long straw so I don’t have to bend my neck. I don’t know if I imagine this scene because it’s my own personal worst-case scenario or because I’ve actually seen HIBM patients progressed to such a state. When I have, those moments have been traumatic. And if you know me, you know I don’t mean that in any offensive or disrespectful way. I mean it in the most honest, authentic, compassionate way.<\/p>\n I am slowly yet suddenly becoming conscious that these images have been flashing in my mind for the last 9.5 years. And so it helps me explain why tonight, in this moment, I feel almost a kind of elation. An intense surge of gratitude. It may be the first time that I don’t feel angry at the fact that at age 40, I have to feel grateful for not being physically incapacitated. Instead, I feel joy. Relief. It feels as if I am finally fast-forwarding through that vicious soundtrack. The one that’s been on repeat: “But I shouldn’t have to deal with this disease in the first place.” I think it feels like true acceptance.<\/p>\n I do have this disease. That part already happened. It’s over. This is what’s happening to me, now. It’s time to let go.<\/p>\n I can not tell you how many times a day I use the word “acceptance” with patients. And so often they look at me, quizzically. “But how do I do that? How does that happen?” I don’t blame them for the confusion. It’s vague and abstract and there’s no how-to guide. But I always offer the same response, “you have to mourn the loss first. You have to hold the feelings, look at them, let yourself feel them and then move on. Set them free.” I tell them that only then will\u00a0they will no longer distort their thoughts. They will no longer engage in as many cognitive distortions, all the catastrophizing and “fortune-telling” that triggers the panic and anxiety. I can’t promise them it will work. But internally, I can vouch for it.<\/p>\n We do not have crystal balls.\u00a0We cannot know the future. Tonight I am just where\u00a0I am. Wouldn’t that be so nice? If there were actually an entire textbook dedicated to HIBM? One with an index where I could look up what to expect a year, two years or 10 years from disease onset? With chapters like, “How Much Exercise is Okay?” Or, “What is the Role Hormones Play in Disease Progression?”<\/p>\n","protected":false},"author":1,"featured_media":425,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-186","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-30","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":15,"url":"https:\/\/livingwithhibm.com\/?p=15","url_meta":{"origin":186,"position":0},"title":"The Jennifer Room","author":"admin","date":"September 29, 2013","format":false,"excerpt":"About a month ago, I received an invitation to attend a \"Patient Day\" reception hosted by Dr. Emil Kakkis, CEO of Ultragenyx. Ultragenyx is the biotech company that is currently in phase II of a clinical trial for a potential treatment to slow the progression of HIBM. \u00a0Dr. Kakkis was\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":27,"url":"https:\/\/livingwithhibm.com\/?p=27","url_meta":{"origin":186,"position":1},"title":"Dreams Can Come True","author":"admin","date":"March 14, 2012","format":false,"excerpt":"Tomorrow my baby boy will turn one. Not only will I celebrate his first year of life tomorrow, but I will also celebrate the first anniversary of a dream come true for me. I will be reminded tomorrow, and probably every birthday of his thereafter, of all that is good\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/03\/IMG_0738.jpg?fit=1024%2C768&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/03\/IMG_0738.jpg?fit=1024%2C768&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/03\/IMG_0738.jpg?fit=1024%2C768&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/03\/IMG_0738.jpg?fit=1024%2C768&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":29,"url":"https:\/\/livingwithhibm.com\/?p=29","url_meta":{"origin":186,"position":2},"title":"My Holiday","author":"admin","date":"February 29, 2012","format":false,"excerpt":"Today is Rare Disease Day. And despite all of the talking, sharing, writing and public speaking I do about my rare disease, HIBM, it is still hard to believe that I actually have one. I still can't fully take in the fact that I have a disease that only a\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":33,"url":"https:\/\/livingwithhibm.com\/?p=33","url_meta":{"origin":186,"position":3},"title":"When a cold was just a cold…","author":"admin","date":"November 8, 2011","format":false,"excerpt":"This last month has been tough. I have literally been sick with one cold after another for what has felt like an eternity. And though, like most people, I've never enjoyed being under the weather, ever since being diagnosed with HIBM, being sick or suffering some sort of physical discomfort\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/11\/cold.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/11\/cold.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/11\/cold.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/11\/cold.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":30,"url":"https:\/\/livingwithhibm.com\/?p=30","url_meta":{"origin":186,"position":4},"title":"Jennifer’s NDF-HADASSAH Speech from the Fundraising Gala for HIBM Resear…","author":"admin","date":"February 22, 2012","format":false,"excerpt":"","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":20,"url":"https:\/\/livingwithhibm.com\/?p=20","url_meta":{"origin":186,"position":5},"title":"Rare","author":"admin","date":"February 28, 2013","format":false,"excerpt":"Today marks the 6th international Rare Disease Day, a day dedicated to raising awareness of rare diseases among patients, non-patients and the scientific community. It is a day that would never have been on my radar had I not been diagnosed with HIBM\u00a0almost 7 years ago.\u00a0\u00a0I spent some time thinking\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/02\/beach.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/02\/beach.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/02\/beach.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/02\/beach.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/186","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=186"}],"version-history":[{"count":6,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/186\/revisions"}],"predecessor-version":[{"id":478,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/186\/revisions\/478"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/425"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=186"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=186"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=186"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\n<\/span>This is not my opinion.\u00a0<\/span>This is not me trying to make a convincing argument.
\nThis is simply a scientific fact.<\/p>\n
\nIt’s that plain and simple.
\nAnd it feels really good.<\/p>\n","protected":false},"excerpt":{"rendered":"