tag:blogger.com,1999:blog-6181780691238814823.post6805062467200984349..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Setbacks.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-6181780691238814823.post-41518810929416532582015-12-09T09:21:11.544+11:002015-12-09T09:21:11.544+11:00It can be so hard to deal with. I struggle at time...It can be so hard to deal with. I struggle at times, but somehow, I'm not always sure how, it gets easier. The scary becomes a strange sort of normal and knowing things like the crushing chest pain isn't going to kill me, although it hurts like hell and feels like it will, makes it easier in a a sense. Not pleasant, but easier. If you've got a good doctor, finding what is causing each symptom and what it means helps, finding forums where everyone is experiencing the same sort of thing helps. In a way the comfort is the product of a lot of little things rather than any one in particular. And time. Time helps immensely. I read this now, 3yrs later, and know that I am in a better place mentally now. <br />Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-72036072674389311832015-12-09T08:53:11.313+11:002015-12-09T08:53:11.313+11:00AS a newly-sick, this is me all the time now - sca...AS a newly-sick, this is me all the time now - scared beyond all reason. That you can mentally and emotionally deal with a progressive prognosis is a testament to your strength and determination, though I'd wager you'd trade both for some health and peace. I pray both for you. And for all of us. Duck and Coverhttps://www.blogger.com/profile/16561656354336083294noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-35386622589753744602012-05-16T22:29:34.421+10:002012-05-16T22:29:34.421+10:00The e-mail feature is also under gadgets. Just cli...The e-mail feature is also under gadgets. Just click on it and add it to your template.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-90491193010005078872012-05-16T22:28:48.320+10:002012-05-16T22:28:48.320+10:00Gosh I had to think about that one. I think if you...Gosh I had to think about that one. I think if you go to Feedjit (the program) it should give you the html to add to your blog. Are you using Blogger? If so, in the Template section you can add a 'gadget', click on that and it'll give you options. Click on "add html" and add the data from Feedjit. Hope that helps. :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-87103434240001723762012-05-16T22:25:04.301+10:002012-05-16T22:25:04.301+10:00Hi Cathy, glad you like the blog. I'll check y...Hi Cathy, glad you like the blog. I'll check yours out when I get a chance. :)<br /><br />With the copying and pasting, I don't mind people copying from the blog as long as there is a link back to here and authorship added. Thanks :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-21822471463108828222012-05-16T22:15:27.870+10:002012-05-16T22:15:27.870+10:00...I'm a pest...also, the follow by e-mail fea......I'm a pest...also, the follow by e-mail feature. I am clueless!!Cathyhttps://www.blogger.com/profile/15554520743830550857noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-58986194324511855722012-05-16T22:07:43.302+10:002012-05-16T22:07:43.302+10:00...also, could you tell me how to add the live tra......also, could you tell me how to add the live traffic feed to my page. I am amazed at how many read my blog, and would love to see who is checking in. Thank you!Cathyhttps://www.blogger.com/profile/15554520743830550857noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-20297609859607383082012-05-16T22:06:12.474+10:002012-05-16T22:06:12.474+10:00Hi Michelle ~ I'm here in Florida, in the US. ...Hi Michelle ~ I'm here in Florida, in the US. Last week, I stumbled upon your blog and was amazed at how you put my life in to your words so perfectly. I copy and pasted some of what you wrote and added in to my last blog post, cathysjournalupdates.blogspot.com. I'll be checking in to see what comes next! Thank you for writing!<br />CathyCathyhttps://www.blogger.com/profile/15554520743830550857noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-53950335092683821982012-04-26T10:52:29.414+10:002012-04-26T10:52:29.414+10:00Hugs.Hugs.MissNikkiAnnhttps://www.blogger.com/profile/04545829688573471396noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-9665176562969262492012-04-20T04:20:30.493+10:002012-04-20T04:20:30.493+10:00For most of my life, my mom has dealt with illness...For most of my life, my mom has dealt with illness and I know she had some of the same concerns about me and my brother dealing with it all. I won't lie and say it was always easy to deal with growing up so fast, but I never wanted her to feel like she should feel bad for not being strong all the time, or letting us see how bad things got sometimes, or that it was too hard for us to handle being strong for her. I've never wanted her to feel like she should hide the bad days and, even when things were scary, I am just glad to be there for her. I imagine your kids feel a similar way. I'm sorry that you and your family are having to deal with all of this. Just want to send my well wishes and support.Victorianoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-26675897247805221762012-04-19T15:27:41.403+10:002012-04-19T15:27:41.403+10:00I'm so sorry you are dealing with this too, Me...I'm so sorry you are dealing with this too, Melle. So many of us are dealing with these issues, just breaks my heart. At least together we can share and support each other, that's what makes it all bearable in the end. xxxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-54386949402308797742012-04-19T15:25:12.575+10:002012-04-19T15:25:12.575+10:00Haven't got the official nod on EDS, just '...Haven't got the official nod on EDS, just 'connective tissue disorder' at this stage, still waiting on that appointment. But I have the frequently popping joints, bendy bits, easy bruising etc etc. Runs down my mum's side of the family, but I'm the first generation where it's become so problematic.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-81286776704537839692012-04-19T15:22:11.670+10:002012-04-19T15:22:11.670+10:00Thanks babe. I think the kids issue complicates it...Thanks babe. I think the kids issue complicates it all. As a mum you don't want them to hurt or have to deal with this kind of issue. It's bad enough when someone else is the source of crapness, but when it's you it really really sucks. Glad to have you by my side in this xxxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-87580280242882804612012-04-19T15:20:10.339+10:002012-04-19T15:20:10.339+10:00Oh Em I'm so sorry you're having difficult...Oh Em I'm so sorry you're having difficulties with your breathing :( You're right it's a stupid crazy condition. I'll cross my fingers for you too that if nothing else things will ease up a bit xxxxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-36909604572297489452012-04-19T15:17:58.088+10:002012-04-19T15:17:58.088+10:00I know you're going through a rough time too A...I know you're going through a rough time too Azaleah so I'll send hugs your way too. It is hard not say cliche comments at times like these but the meaning and heart behind them are what matters. Here's to better times for us both :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-69738568483179719672012-04-19T15:15:54.598+10:002012-04-19T15:15:54.598+10:00Thanks Steph. You're right, it is scary at tim...Thanks Steph. You're right, it is scary at times. Knowing that you're progressing intellectually and having it spotlighted and in your face are two very different things. Especially when your kids witness it. :( Thank you for your lovely comment. It does make it all worth it if someone else can find a little comfort from what I write, though I wouldn't wish these experiences on anyone.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-30074211193561125392012-04-19T15:12:28.511+10:002012-04-19T15:12:28.511+10:00Good old guilt. I know it's not my fault in th...Good old guilt. I know it's not my fault in the logical moments, but those illogical emotions are a bitch. I'm sure this time next week I'll be fine. I mean I'm better today than I was yesterday or the day before. Just feel completely dreadful and exhausted, worse than I have in ages. Thank you for your tweet, it was much appreciated xxxxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-42624635544477785242012-04-19T15:09:17.264+10:002012-04-19T15:09:17.264+10:00Thanks. Sometimes there just aren't words, but...Thanks. Sometimes there just aren't words, but will take huggles :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-91070585348845817352012-04-19T15:08:14.004+10:002012-04-19T15:08:14.004+10:00I'll take those cyber hugs and cheers right no...I'll take those cyber hugs and cheers right now. It's funny, my eldest told me yesterday that I don't have to be strong at times like these, must be a great minds thing. He gave me strict orders to be selfish when I'm going through a bad patch. But it's a hard idea to wrap my head around.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-69633502023029911052012-04-19T15:04:38.942+10:002012-04-19T15:04:38.942+10:00Thanks Niki :) I'm hoping I'll pick up soo...Thanks Niki :) I'm hoping I'll pick up soon. I think it's just one of those moments where it all became too real. I mean I know I'm sick. I know it's getting worse. But this was just a bit too 'in my face' for comfort. Just exhausting.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-37098853039049770322012-04-19T08:42:19.945+10:002012-04-19T08:42:19.945+10:00::tears:: my heart breaks for you.
I can't s...::tears:: my heart breaks for you. <br /><br />I can't stand what i am putting my family through. And some days the knowledge that i dont ever get better than i am right now.... and that eventually i'll have another setback and even this will be preferable to whatever that new normal brings.... <br /><br />You don't have to be strong today. With whatever we have, for as long as wr have it to offer, we'll be strong for you.melle e.noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-87836499862713483032012-04-19T08:08:22.671+10:002012-04-19T08:08:22.671+10:00Do you have a diagnosis of EDS as well as the othe...Do you have a diagnosis of EDS as well as the other?Kim @frogpondsrockhttp://frogpondsrock.comnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-8868363892555004652012-04-18T13:38:41.757+10:002012-04-18T13:38:41.757+10:00Ah man I hate that you are having a rough time. I ...Ah man I hate that you are having a rough time. I hope it passes soon. Sadly I can relate hun. When I went through my stroke, and couldn't drive. Not driving with 5 kids is um hard, but yes I totally get what you mean. They would apologize to me. I would be like "it should be me that should be sorry" I understand, and I'm here for you. Thick or thin. Bad or good. I hope there is light at the end of this crapfest soon honey.illnesssucksfindfunnyhttps://www.blogger.com/profile/15657433565874382826noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-53212472461429858332012-04-18T02:53:37.851+10:002012-04-18T02:53:37.851+10:00i want to say like you would to people normally, h...i want to say like you would to people normally, hope you feel better soon. yet with pots you know thats fruitless. what i can say is i hope they find a med that will help you feel at least a little better. to ease some of the symptoms. <br /><br />i spent last night not breathing properly. trying to get into the habit of making yourself breathe is something i cant get used too. i know where your coming from michelle. the despair at this stupid,crazy condition.<br /><br />cling onto what you can, feel crap, appreciate the small, do whatever gets you through the day. keeping my stupidly long marfan type fingers crossed for you. xxxxxxxxxxemhttps://www.blogger.com/profile/14196652412958890367noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-27042028026227578222012-04-18T00:03:46.435+10:002012-04-18T00:03:46.435+10:00I couldn't make it through without crying. I k...I couldn't make it through without crying. I know it's cold comfort but you are absolutely amazing, and absolutely entitled to moments of breakdown. Gah, i wish i could come up with something to say that could help, and didn't come across as cliche. But please know i'm sending big hugs and happy thoughts your way :)Blooming Azaleahhttps://www.blogger.com/profile/15072686580633463291noreply@blogger.com