tag:blogger.com,1999:blog-6181780691238814823.post3299725512708327812..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Show and tellMichelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-6181780691238814823.post-84342926337152885342019-03-05T12:54:29.519+11:002019-03-05T12:54:29.519+11:00I used to feel that anxiety too but over time and ...I used to feel that anxiety too but over time and with the support of friends in the disability and illness community and my family I learnt to love my aides and the freedom they provide me. Give yourself time to adjust and know that you're doing what's right for you. The walking stick was a gift from a brand in the UK https://www.neo-walk.com/ they have some fabulous options. Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-79281193776881578532019-03-05T12:51:42.932+11:002019-03-05T12:51:42.932+11:00Thanks Corrine. I feel like such a slack blogger b...Thanks Corrine. I feel like such a slack blogger but Summer and life have sucked so I have been concentrating on survival and focusing on my body's needs and finding the joy in life. I really appreciate you checking in. As you say after all this time you know how this Dysautonomia malarky goes and it's nice to have someone check in to see how you're going. Thank You. MichelleMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-62557783165960522132019-03-05T12:49:13.817+11:002019-03-05T12:49:13.817+11:00It's a real catch 22. I find I dress for mysel...It's a real catch 22. I find I dress for myself and how it makes me feel rather than anyone else but I have cultivated a small group of doctors who get me and understand that a nice dress and lippy doesn't negate my illness or pain. But it's been tough going to find them and I still encounter crappy doctors who either do the disbelief or hysterical female lines you describe. I have learnt to stand up for myself and be assertive over the years, plus my husband is a great advocate and can explain things I can't (not that it should take him confirming what I describe to my doctors for them to believe me). Medicine struggles to work with those who don't meet their expectations of illness. I do hope you can find a doctor who treats you with the respect you deserve. (and sorry for the huge delay in responding I have been away from the blog for months and only now wading back through comments)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-85768996236412357572019-03-05T12:43:03.851+11:002019-03-05T12:43:03.851+11:00I've had a close personal love affair with dry...I've had a close personal love affair with dry shampoo this past year. Washing my hair so exhausting and I can't really do it properly anymore, but at least that dry shampoo stuff takes the worst of the oil and mank out. I'm not a huge hat person so I tend to put my hair up when it's really bad or I have at times gone into my hairdresser just for a wash. I'm glad I can help make you smile we all need something that can pick us up on those dark days xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-72301525525941209132018-12-31T12:29:48.329+11:002018-12-31T12:29:48.329+11:00A friend sent me a link to this because I feel so ...A friend sent me a link to this because I feel so strange about buying a cane. (Mine is black with a bunch of different colored dots on it, and it folds up for when I don't need it, and even though I think it's quite pretty I'm kind of anxious about using it.) Thanks for writing--I can't really hide my disability with or without a cane, so I'm trying, and not really always succeeding, to make it fashion. I love your lucite cane--where did you get it?The Student-turned-Doctorhttps://www.blogger.com/profile/08506070687255989103noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-31795507842869064212018-11-17T22:34:42.199+11:002018-11-17T22:34:42.199+11:00Hello
Just check in to see how your dysautonomia ...Hello<br /><br />Just check in to see how your dysautonomia world is going. Living with dysautonomia for 15 years has so many different seasons.<br /><br />So even when you are not posting and taking a break from your blog., I am thinking of you. Hoping that things are going well- even stable. 15 years of this teaches me to reach out encourage others- because it is a hard battle on the symptomatic days- ecstatic happiness on the functional days. Eventually you weather through so many days, so many battles.<br /> - just seeing the blue sky in the morning, having a dog at your feet just some how just keeps you waiting and hoping to feel contentment serenity and dysautonomia no matter the day<br /><br />Late night blogging when sleep is impossible <br /><br /><br />Hope you are doing good- from a big fan in Canada<br /><br /><br />CorrineCorrinehttps://www.blogger.com/profile/17592172977909860639noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-48433261923283167912018-10-25T13:11:43.546+11:002018-10-25T13:11:43.546+11:00Hi Michele
I really enjoy reading your posts. I a...Hi Michele<br /><br />I really enjoy reading your posts. I also look regularly at your instagram too. I love that you dress up so beautifully. I know it has its costs physically, but the benefits are awesome. You look fab. I’m endeavouring to dress most days. It’s a struggle to get out of my pjs. I’ve got POTS, overactive mast cells, and one month ago was diagnosed with Graves’ disease but have had to stop treatment for it as the medication has inflamed my liver. Sleepless nights are a part of Graves’ disease and I am completely sleep deprived. As a consequence of sleep deprivation my memory is shot and my conversation is mostly word salad. I’m trying to get to the point here....Anyway, does dressing up and attending your medical appointments help you to be taken seriously by doctors? I’m 62 and I find most doctors just don’t take me seriously. If I’m contained and looking in control they respond as if I’m not sick/in pain. If I’m emotional then I’m treated as though I’m over reacting etc...and hence, not sick/in pain. I’ve decided to try dressing up generally and also when going to the doctors because I need to be treated respectfully, in the surgery and in life, and I hope this will help. <br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-89451225678383117132018-09-18T03:32:58.543+10:002018-09-18T03:32:58.543+10:00You're amazing Michelle and you look so glamor...You're amazing Michelle and you look so glamorous! I'm always hiding my unwashed hair under hats when I do get out. I love your red powerchair - I have a rollator that colour and my manual wheelchair is blue. Your blog really brings a smile to my face on the darkest days. Hugs from the UK xxxL Bryannoreply@blogger.com