tag:blogger.com,1999:blog-6181780691238814823.post791727335482298193..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Step 1 Numb.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-6181780691238814823.post-47862226732817893852014-10-21T02:06:20.736+11:002014-10-21T02:06:20.736+11:00Thanks. Been struggling with this big time for 10...Thanks. Been struggling with this big time for 10 years. So few people can pronounce Dysatuonomia, let alone comprehend it. It's good to know that there are other people out there who understand.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-52117163271341118562014-10-20T13:30:46.030+11:002014-10-20T13:30:46.030+11:00Hugs to you to Billie-Blue. It's such a hard s...Hugs to you to Billie-Blue. It's such a hard slog and exhausting. The GI suggested a fibre supplement to get me moving, the dietician I had to see for the gastroparesis, said definitely not. So now i'm stuck trying to get on top of my new diet and not pooing and still feeling crap and in pain. You can't win. Glad you're liking the art, it really does tap into so much of what we are all dealing with. I love that each form adds a unique interpretation. xx Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-44801626651512234932014-10-20T13:27:17.212+11:002014-10-20T13:27:17.212+11:00Hugs Anon. Seems to be par for the course with chr...Hugs Anon. Seems to be par for the course with chronic illness. xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-31708632668060296902014-10-20T12:58:22.565+11:002014-10-20T12:58:22.565+11:00Thank you for your post, Michelle. So many times,...Thank you for your post, Michelle. So many times, I have felt what you expressed. I feel less alone.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-32256715326982925882014-10-15T04:28:12.182+11:002014-10-15T04:28:12.182+11:00"Yeah, we see that a lot." I hsve heard ..."Yeah, we see that a lot." I hsve heard those words do many times. I get the dull pain in my abdomen thst turns to sharo knives. But apparently their is nothing they can do about it. Taking tons of laxatives helps the pain but brings on another sort of pain and I havent found a laxative yet that doesn't make one or two of my other pots problems worse. <br /><br />I was told last week thst my pots was for life. He is a good doctor but I coukdnt hrlp but musd that I had to negotiate the physical and financual burden og getting to and from the hospital only to be told something I hsve known for a long, long time. But he's a decent dpecialist - and he put my bill on medicare instead of me having to fork out $400 up front. That helped ease the burden s little. He also found me a top gi dic ho tskes medicare from me, isvery interested in what is happening to me but he only thing he has to offer is, "yeah, we see that a lot with dys/nerve damage problems". 9 snd s half yesrs of constipation now. Funnily, it was an April Fools Day when my bowels shut down. The joke dure was on me.<br /><br />I'm loving all the artistic expressions of dys, michelle, just been too tired to post sbout them - but I sm identifying, and feeling, with all of them. A great example of making siver liningsout of our afflictions.<br /><br />sorry about the spelling mistakes or wrong words but suto correct is winning more, these days. And my fingers oftrn dont tap the letters I thought I had. <br /><br /><br /><br /><br />pD.D.I.https://www.blogger.com/profile/11001785040932643279noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-49538151614555941172014-10-14T13:56:43.621+11:002014-10-14T13:56:43.621+11:00Oh and the gastroparesis? I get that too.! Taking ...Oh and the gastroparesis? I get that too.! Taking a liquid (not the pill form) magnesium/calcium/D supplement seems to keep things, ummmm, moving for me. It's the magnesium - it also helps the nerves I guess (?). That and the occasional senna, and eliminating dairy, are all helpful. It's something I have to attend to ALL THE TIME - I can't trust my body to work on its own.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-18292648129357553752014-10-14T12:53:41.282+11:002014-10-14T12:53:41.282+11:00Thanks letteradicorsa xx Amazing how much diet hel...Thanks letteradicorsa xx Amazing how much diet helps with things. I'm already fairly restricted in what I eat and on Thursday I get to see a dietician to restrict it more. All I can think is it better help. I'm over no answers, half answers etc. I am so happy that the paleo-autoimmune diet works for you, always celebrate any win for any of us. Thanks for the link. xx Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-31336044146667398982014-10-14T12:50:18.737+11:002014-10-14T12:50:18.737+11:00Thank you Lisa xx I will get back to an even keel ...Thank you Lisa xx I will get back to an even keel again I'm just exhausted by it all at the moment. I didn't realise how much I was hanging out for this appointment until the pain was put in the 'live with it' basket and he moved on. Hard to live with it when I've just been existing with it for months now :(Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-18332461556739619322014-10-14T12:47:37.950+11:002014-10-14T12:47:37.950+11:00Thanks Kelley, I know you understand only too wel...Thanks Kelley, I know you understand only too well. xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-84535175316465110162014-10-14T12:46:41.751+11:002014-10-14T12:46:41.751+11:00Thanks Julie. xx My pain issues were pushed aside ...Thanks Julie. xx My pain issues were pushed aside to focus on the gastroparesis so I'm left hanging in the wind at present. Hard to wrap my head around that. Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-86991065370694796942014-10-14T06:20:41.810+11:002014-10-14T06:20:41.810+11:00I'm so sorry to hear this, neuropathy (especia...I'm so sorry to hear this, neuropathy (especially of the gut) has been #2 of the THINGS I HATE THE WORST about this disorder (#1, of course, being uncontrollably deyhydrated and blacked out before the ambulance arrives). "Live with it" is an UNACCEPTABLE ANSWER! <br /><br />For what it's worth, the ONLY thing that has helped me with my various neuropathies (gut and limb) is the paleo-autoimmune dietary protocol - - it takes a couple of weeks before I see improvement but I pay a heavy price when I fall of the wagon and resume eating my old way. Actually, from the way I feel when I eat *normally* I am pretty certain that, save this special diet, I'd have "fibromyalgia" in addition to everything else I've got. If anyone is interested: http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-74375678376212240432014-10-13T20:40:33.222+11:002014-10-13T20:40:33.222+11:00My heart aches for you too Michelle,your pain is c...My heart aches for you too Michelle,your pain is certainly palpable in this post. Chronic illness sucks, never getting fixed sucks, hearing it at every appointment sucks, the investment, the hope, the time, the money, I get it hun .... and all I can do for you is send all my cyber hugs and spoons and say I am sorry <3<br />Anonymoushttps://www.blogger.com/profile/05589511552708440483noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-74957816602004885782014-10-13T13:15:47.298+11:002014-10-13T13:15:47.298+11:00onomatopoeia my friend. onomatopoeia my friend. Kelley @ magneto bold toohttps://www.blogger.com/profile/05489121982267918998noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-22938832447241699832014-10-13T08:16:20.469+11:002014-10-13T08:16:20.469+11:00Oh no! Your pain is truely palpable in this post....Oh no! Your pain is truely palpable in this post. My heart aches for you Michelle. I know how long you have held out hope waiting for this appt, only for that hope to be forsaken once again. I am truly sorry.Juliehttps://www.blogger.com/profile/09794695754484049884noreply@blogger.com