tag:blogger.com,1999:blog-413134320630025963.comments2022-10-28T02:05:52.903-07:00Living with HIBMlivingwithhibmhttp://www.blogger.com/profile/13472246637925768722noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-413134320630025963.post-33653353733157281082014-04-28T15:54:40.136-07:002014-04-28T15:54:40.136-07:00SC (may I call you that?),
Of course I already lov...SC (may I call you that?),<br />Of course I already love you just by the mere fact that you are Ali's sister and I have such a deep love for her. But I love you even more for being out there, for reading and joining me on the journey, for reaching out with so much love and support and for just getting it. Thank you. So much.livingwithhibmhttps://www.blogger.com/profile/13472246637925768722noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-78187274106307241112014-04-27T19:45:03.752-07:002014-04-27T19:45:03.752-07:00I love the fact that you wore the sandals. I love ...I love the fact that you wore the sandals. I love how honest you are about the emotional and mental process of wishing someone was there and then being grateful that they were not. I admire your courage again and again. My daughter's first grade vocab words that we studied tonight included the word BRAVE- the first grade definition someone brave is not afraid of danger. I disagree. I believe a BRAVE person is afraid of danger but faces it anyway. This sums up my experience of you in reading your blog. Keep moving forward and being brave! xo Stacy-ColleenSC Namethhttps://www.blogger.com/profile/00282046194800592821noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-37471503391761050602014-04-08T21:34:19.901-07:002014-04-08T21:34:19.901-07:00Thank you Kathy for reading and for your support a...Thank you Kathy for reading and for your support and encouragement. It means so much to me to have so many people on this journey with me...livingwithhibmhttps://www.blogger.com/profile/13472246637925768722noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-30083764460441818412014-04-08T21:33:23.684-07:002014-04-08T21:33:23.684-07:00Thank you Stephanie for being out their and for yo...Thank you Stephanie for being out their and for your shared indignation! I will definitely keep you posted on how things play out. Hope life is treating you and Nathan well. xolivingwithhibmhttps://www.blogger.com/profile/13472246637925768722noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-19101769131672374322014-04-08T20:43:54.471-07:002014-04-08T20:43:54.471-07:00It's so upsetting to know that they cannot (or...It's so upsetting to know that they cannot (or will not) accommodate this very simple thing. You are so brave to be standing up for yourself, and I am sure, many others who probably have had the same experience. <br />Kathyhttps://www.blogger.com/profile/08459245588013727337noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-18260406346634719632014-04-03T23:18:18.505-07:002014-04-03T23:18:18.505-07:00This is infuriating! Uggghhh! I love the letter!...This is infuriating! Uggghhh! I love the letter! Please let me know how Equinox responds. If they are not incredibly responsive, I would love to say something. And then I'll quit the stupid, ignorant, insensitive, overpriced, irritating gym with you! Stephanie W.https://www.blogger.com/profile/04647065316289414496noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-69671161438821600782014-03-22T11:14:48.614-07:002014-03-22T11:14:48.614-07:00Kudos to your entire family...I am sure everything...Kudos to your entire family...I am sure everything will be ok soon...have faith. .Journeyhttps://www.blogger.com/profile/02902854370740142141noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-16302857458850390242014-03-22T11:04:04.390-07:002014-03-22T11:04:04.390-07:00Such true account of hibm...my husband is with hib...Such true account of hibm...my husband is with hibm and everything you have written is so very true...my heart reaches out to all...hope we get a cure asap...god bless!!!Journeyhttps://www.blogger.com/profile/02902854370740142141noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-268715543520686652014-03-21T10:55:19.466-07:002014-03-21T10:55:19.466-07:00I've found your blog when looking for more inf...I've found your blog when looking for more info on HIBM. I was diagnosed 18 years ago with one condition and then last year a new consultant gave me the news that this diagnosis was wrong, rediagnosed me with HIBM and everything has fallen into place. I have read your blog with great interest, most of it has really hit a nerve, some of it made me sad and some of it has made me smile, mainly because you are way behind me and the place you see in your future is where I am now. Knowing that there are other people who actually do understand your struggles does help and knowing that there is a chance, no matter how slim, of having some kind of treatment which could give us some kind of independence back is where we have to focus. Keep doing what you're doing!!! :))Maxwellhousehttps://www.blogger.com/profile/14688167954566556147noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-16186382728761838312013-09-30T15:07:17.592-07:002013-09-30T15:07:17.592-07:00Love the Jennifer room! xoxoLove the Jennifer room! xoxoDjuna Barneshttps://www.blogger.com/profile/07669015007468854475noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-70396655351724435892013-09-29T07:38:22.033-07:002013-09-29T07:38:22.033-07:00Dr. Kakkis and his group are amazing. Your bravery...Dr. Kakkis and his group are amazing. Your bravery in doing all of the things you do is so inspiring. I'm glad you posted the pictures. It's nice to see your beautiful smiling face.Stephanie Woodfin, D.O.https://www.blogger.com/profile/05549893413445300270noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-51964633109718624422013-06-16T08:22:52.199-07:002013-06-16T08:22:52.199-07:00This is beautifully written. I think of you often ...This is beautifully written. I think of you often and your blog lets me keep a connection--thank you for that.Stephanie Woodfin, D.O.https://www.blogger.com/profile/05549893413445300270noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-44311217400162116162013-02-28T11:55:59.772-08:002013-02-28T11:55:59.772-08:00Unbelievable piece. Loved every word and sentimen...Unbelievable piece. Loved every word and sentiment of it. You have an amazing friend in Gabrielle, Jen, and the piece and its message is lovely. Sending so many hugs and positive thoughts, as always. AliAli Kamberhttps://www.blogger.com/profile/16532117488952345476noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-36553321432853190492013-01-06T11:57:35.733-08:002013-01-06T11:57:35.733-08:00From The Vortex to this. I don't know how to s...From The Vortex to this. I don't know how to say this correctly, but the gift you gave to your son is what really hit me about this moment. He will always remember his mother skiing with him and that is a precious gift you have given him. I love that video--you were brave to film yourself. <br /><br />I am thankful that Carolyn posts links to your blog every so often so I can keep up with your story. <br /><br />Robin Smithfibercontenthttps://www.blogger.com/profile/12227404595307567858noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-1403766658980163932013-01-03T20:38:08.214-08:002013-01-03T20:38:08.214-08:00thank you Stacie for reaching out. i am glad to kn...thank you Stacie for reaching out. i am glad to know you are out there.<br />do you mind me asking, which stacie is this?<br />livingwithhibmhttps://www.blogger.com/profile/13472246637925768722noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-59664377801572875502013-01-03T20:36:22.529-08:002013-01-03T20:36:22.529-08:00Thank you Djuana my love!
Still smiling!!!
Miss yo...Thank you Djuana my love!<br />Still smiling!!!<br />Miss you as usual.livingwithhibmhttps://www.blogger.com/profile/13472246637925768722noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-22270986296198504402013-01-03T19:24:29.076-08:002013-01-03T19:24:29.076-08:00This is so freakin' awesome!!!!!!!!!! 1. It&...This is so freakin' awesome!!!!!!!!!! 1. It's true. California has made us all babies in the cold. I used to ski and snowboard all over the place and now I much prefer small slopes and man made snow because, well, it's much more fun to ski when it's 60 degrees. 2. This video is amazing and you are so stunning on that mountain! 3. And yes, do scream!<br /><br />Love you,<br />DjunaDjuna Barneshttps://www.blogger.com/profile/07669015007468854475noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-52986898795567137062012-12-31T11:11:28.037-08:002012-12-31T11:11:28.037-08:00thank you for sharing your experience and includin...thank you for sharing your experience and including me in on your journey.<br />i wanted to let you know i read these entry's and in the past didn't know what to say after reading. then today i realized that acknowledgment is a good idea. i'm hearing you and i am humbled. specific as the situation you describe is, there is something there for all of us when you say "I gave myself permission to just be where I was" . <br />xo<br /><br />staciehttps://www.blogger.com/profile/09878340291024119065noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-22739674740491846422012-09-11T22:09:30.588-07:002012-09-11T22:09:30.588-07:00Ciara,
Thank you so much for reaching out. You ar...Ciara,<br />Thank you so much for reaching out. You are part of the reason I decided to share my experiences publicly. For those of us suffering to feel less alone...<br />Much love,<br />Jenlivingwithhibmhttps://www.blogger.com/profile/13472246637925768722noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-843336063540745122012-08-30T09:02:40.493-07:002012-08-30T09:02:40.493-07:00As a HIBM patient myself, after reading each and e...As a HIBM patient myself, after reading each and every one of your stories today I felt a big weight of my shoulders knowing that someone out there does understand me and my condition - you touched on every detail on my journey of life trying to live with this terrrible disease.<br /><br />CiaraAnonymoushttps://www.blogger.com/profile/16250747604830477599noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-48100845249041972642012-05-11T19:14:12.830-07:002012-05-11T19:14:12.830-07:00I'm an old friend of Gabrielle's an have j...I'm an old friend of Gabrielle's an have just learned of you & HIBM today (& just read your entire blog!). Your descriptions of your physical & emotional battles are so moving. I can especially relate to this post as I have type 1 diabetes & wear an insulin pump. Many of us with them often lament the stares & confused glances. I too would Always rather be asked questions & in fact relish the opportunities I randomly get to educate others! This post reminds me that we really are not alone- even across disease lines we can relate to each other. Hurray for the Internet. So glad too 'meet you!'rame339https://www.blogger.com/profile/07277659855166910312noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-25885217179310875222012-03-14T08:23:39.103-07:002012-03-14T08:23:39.103-07:00Happy birthday, sweet Lev. You are a testament to...Happy birthday, sweet Lev. You are a testament to your mama's strength and love of life. Xoxo. ~jessejessehttps://www.blogger.com/profile/00528415664742132143noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-79951842920230549042011-08-27T15:38:36.405-07:002011-08-27T15:38:36.405-07:00Jen,
You write so beautifully, so palpably about ...Jen,<br /><br />You write so beautifully, so palpably about the the push-pull of bittersweet that you deal with every day. You are amazing. Thank you for sharing a piece of yourself with us. I, along with so many are truly grateful to you for that.<br /><br />xo,<br /><br />Mandie GirouxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-85879896075976248402011-08-21T22:47:08.789-07:002011-08-21T22:47:08.789-07:00Dear Jennifer,
Congratulations on your new home! M...Dear Jennifer,<br />Congratulations on your new home! May it be filled with your family's joys, laughter, harmony, and warmth. XO, KathyKathyhttps://www.blogger.com/profile/08459245588013727337noreply@blogger.comtag:blogger.com,1999:blog-413134320630025963.post-17134514311373808072011-07-06T20:09:27.834-07:002011-07-06T20:09:27.834-07:00Well said, a post for the common good.Well said, a post for the common good.gravityranchhttps://www.blogger.com/profile/08864603395956995107noreply@blogger.com