tag:blogger.com,1999:blog-6560948310084622323.post5474061481554014285..comments2023-10-18T07:27:13.938-07:00Comments on Decadent Divas: My name is Jennifer Kacey....and I have Lupus.Jennifer Kaceyhttp://www.blogger.com/profile/06998255404206333718noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-6560948310084622323.post-33640318746822594672016-10-26T14:19:39.590-07:002016-10-26T14:19:39.590-07:00Thanks for sharing your journey!!! Awful how many ...Thanks for sharing your journey!!! Awful how many people have a similar story. Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-6605964510212963912016-10-26T14:11:21.072-07:002016-10-26T14:11:21.072-07:00After giving birth to my first child, it triggered...After giving birth to my first child, it triggered my lupus. It was awful the rash itched and burned so bad nothing was helping. Even growing up into my young adulthood I knew something was wrong. I became my own doctor and earned my arm chair degree doing years of medical research and diagnosed myself. It took almost nine years of going to hundreds of doctors until final got one that listened and told me I was right. Went to Yale New Haven hospital for appointments for six months to get a final diagnosis. Yes, everybody who has lupus has its own set of blueprints so to speak on how it affects us. It is very difficult to live with but I fight through it everyday. I know I'm not alone and feeling like I'm crazy living with this illness. Thanks to all who share their lupus stories with others. Stay strong, have faith and always a positive and loving life attitude. We shall survive.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-49405296652275767582016-10-26T08:53:44.996-07:002016-10-26T08:53:44.996-07:00UGH!! How incredibly horrible. Someone else told m...UGH!! How incredibly horrible. Someone else told me recently "they don't call it practicing medicine for nothing". OMFG isn't that right! Thank goodness you kept checking!Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-19137644473334903152016-10-25T14:05:47.008-07:002016-10-25T14:05:47.008-07:00Your mantra of never settle is on par with mine- b...Your mantra of never settle is on par with mine- be your own advocate. I'm a transplant patient and a few years ago, I had a minor rejection. My doctor freaked and changed my meds. Almost immediately, I felt worse. I couldn't breathe, and I felt crappy overall. I looked up the side effects of my new med and my symptoms were listed as very rare, but possible. I went to my doc with this info, and she told me not to believe everything I read on the internet. She said I was still in rejection, and I needed another biopsy. Long story short, 3 biopsies later, with negative results, I again broached the new medicine as the culprit. She practically laughed in my face. She is no longer my doctor, and as soon as the new doc took me off that med, I felt 100% better. Doctors think they know best, but you know your body. Never stop fighting for you! Good luck!Danahttps://www.blogger.com/profile/11469751842775363556noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-17652076844617376312016-10-25T13:59:20.275-07:002016-10-25T13:59:20.275-07:00HUGS!! What a wonderful post. I share many of thos...HUGS!! What a wonderful post. I share many of those lovely aspects of Lupus with you. I too, enjoy changing my nail color every week. LOL On the down side, I was diagnosed the summer with Fibromyalgia as well. I find eating an organic diet with yoga and walking really helps. The three morals to the story... I embrace and remind myself daily. I try to keep humor above the blues. I don't have time to be sick, life keeps me busy but I do know when to slow down enough to prevent some things.Mary Quasthttps://www.blogger.com/profile/02068681260271252321noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-22994943650085275812016-10-25T13:58:53.636-07:002016-10-25T13:58:53.636-07:00Definitely ready for the "feeling better"...Definitely ready for the "feeling better" phase of this journey!!! :)Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-77896774463193444422016-10-25T13:58:27.621-07:002016-10-25T13:58:27.621-07:00Exactly!!! I became allergic to the phrase "I...Exactly!!! I became allergic to the phrase "I don't know" years ago. It's ridiculous how many people have similar stories. The only way to make sure you're okay is to be your own advocate. That's the reality. Would it be great if it was different? Of course! But perceived reality would have gotten me killed. That's not an option. Big hugs to you and your friend. We'll all do a little ass kicking of our own!Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-873212470627160762016-10-25T13:57:42.848-07:002016-10-25T13:57:42.848-07:00So very sorry hon. You are an incredibly strong wo...So very sorry hon. You are an incredibly strong woman. If anyone can beat this, you can.Anonymoushttps://www.blogger.com/profile/05781036709323796952noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-61267172441946262642016-10-25T13:52:00.657-07:002016-10-25T13:52:00.657-07:00I sure hope you fired your PCP. What he did to you...I sure hope you fired your PCP. What he did to you was absolutely inexcusable. My day job is in healthcare. Unfortunately, there are a lot of people in your position. If those that practice medicine can't stick you neatly into a diagnostic slot, they treat you like your crazy. A good friend of mine complained of pain after a surgery. TWO YEARS LATER and after a lot of eye-rolling from the "professionals," she was diagnosed with lung cancer. Yeah, she pretty much diagnosed herself too. Fight for your health. You are your best advocate. Stay that way. At least now you know what you're up against. FIGHT! Stay strong and for heaven's sake, feel better! Sending healing vibes from Ohio.<br />~Kathleen Lash~Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-70469012775286231212016-10-25T13:32:32.486-07:002016-10-25T13:32:32.486-07:00Thank you!!Thank you!!Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-91146415892833705192016-10-25T13:27:13.585-07:002016-10-25T13:27:13.585-07:00I'm glad you are on the right road this time. ...I'm glad you are on the right road this time. I hate when people don't listen and I'll send you prayers to keep things on the right road.Melissa Keirhttps://www.blogger.com/profile/10247037321769755660noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-39617233872284934062016-10-25T10:59:51.982-07:002016-10-25T10:59:51.982-07:00Soooo sorry to hear about your mum. It's so sc...Soooo sorry to hear about your mum. It's so scary how much it happens. A ridiculous amount. Demanding a higher standard shouldn't be something we have to beg for yet.....it is.Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-79864169640588241342016-10-25T10:58:51.654-07:002016-10-25T10:58:51.654-07:00Awesome!Awesome!Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-15336314091553287332016-10-25T10:51:35.664-07:002016-10-25T10:51:35.664-07:00You should contact BA Tortuga. Talk with her about...You should contact BA Tortuga. Talk with her about her journey. Lisa G'shttps://www.blogger.com/profile/03397314763722251510noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-14456074590231177562016-10-25T10:51:28.197-07:002016-10-25T10:51:28.197-07:00You should contact BA Tortuga. Talk with her about...You should contact BA Tortuga. Talk with her about her journey. Lisa G'shttps://www.blogger.com/profile/03397314763722251510noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-57867781992887354192016-10-25T10:45:54.226-07:002016-10-25T10:45:54.226-07:00I think we all know so many cases where "medi...I think we all know so many cases where "medical science" and its practitioners behave as yours have. I almost lost my mom in January because they wouldn't listen until she had so many clots in her lungs she was hours from death. It takes so much courage to do what you did and push forward against a tide of experts. I am so glad you self diagnosed (happens way more than they want to admit) and didn't let anyone stop you from finding what help is possible.Kate Richardshttps://www.blogger.com/profile/11266895320753860578noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-69574616771527965942016-10-25T10:39:07.704-07:002016-10-25T10:39:07.704-07:00Thanks so much for the love!! Miss you crazy! Depr...Thanks so much for the love!! Miss you crazy! Depression is incredibly rough to handle. I'm so thankful being positive comes naturally to me. If it didn't I honestly don't know how I would function. Miniman is sooo grown up now. Having to look up to him when I don't have heels on is soooo wrong!Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-91880886366428838672016-10-25T10:27:48.309-07:002016-10-25T10:27:48.309-07:00Oh Jen, I am so sorry to see what you are going th...Oh Jen, I am so sorry to see what you are going through. I fight depression and have most of my life but it is NOTHING like you are fighting. I will keep you in my prayers daily forever. Would love to see you and that miniman of yours. Keep fighting !!!!! Love you !! Sharon EvansAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-11278628494030102132016-10-25T09:38:33.924-07:002016-10-25T09:38:33.924-07:00Thanks so much, Rose! For the last while every tim...Thanks so much, Rose! For the last while every time I wake up I know I'm not going to feel well. I've learned to press on. Some days get better, some days don't, but getting things accomplished always makes me feel better and I can still focus on that. :*Jennifer Kaceyhttps://www.blogger.com/profile/06998255404206333718noreply@blogger.comtag:blogger.com,1999:blog-6560948310084622323.post-72814207841099937852016-10-25T09:35:26.073-07:002016-10-25T09:35:26.073-07:00My heart goes out to you. I've dealt with migr...My heart goes out to you. I've dealt with migraines all my life and though not as bad,as what you're going through its still terrible not knowing if you'll wake up feeling well on any day. Your courage is inspiring. Thank you for putting this out there. Sending you hugs. Rose Anonymoushttps://www.blogger.com/profile/09083157365227379944noreply@blogger.com