tag:blogger.com,1999:blog-2595844535299775193.post412719567946858126..comments2023-10-24T06:56:13.050-04:00Comments on Road to a Lupus Cure: The Importance of Minimizing the Communication GapSophie - LFAhttp://www.blogger.com/profile/04688789367974778219noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-2595844535299775193.post-15343263931934072202013-09-16T01:01:49.383-04:002013-09-16T01:01:49.383-04:00I am glad to find so many helpful information righ...I am glad to find so many helpful information right here. Thank you very much.Medisoft Softwarehttp://www.ironcomet.com/medisoft-softwarenoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-10510254172061740042013-09-12T21:52:52.241-04:002013-09-12T21:52:52.241-04:00Communication is really a very important aspect of...Communication is really a very important aspect of socialization.Australian telecom companyhttp://vtelecom.com.au/noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-19628617960115965272013-09-10T21:07:43.342-04:002013-09-10T21:07:43.342-04:00I too have been conditioned to hold a lot back aft...I too have been conditioned to hold a lot back after many years of family, friends, coworkers, and even other doctors accusing me of being a hypochondriac. The statement I love most is "you look fine so you must be feeling better". Most people really don't want to hear about it so I keep most of it to myself. I do try to remember the worst days to report to my numerous doctors. But I have trouble remembering between visits. An app would be great particularly if your Doctors will look at the information.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-57976903034080960462013-09-07T02:28:07.398-04:002013-09-07T02:28:07.398-04:00I am new to this flare thing as I was only told i ...I am new to this flare thing as I was only told i had a connnective tissue disorder last year. And while I am sure I have had lupus for at least 20 years I am only now, just understanding what is classified a flare. I feel that due to stress, over working, exercising or forgetting medications I can have a flare up quite often. But in saying that If I went to my Rheum. or Doctor to tell them every time I ached or felt exhausted or had muscle weakness/ a rash flare/ Stupid Pleurisy pains or dreaded mouth ulcers from hell, I would be in their offices weekly. <br /><br />What I have found is that while my medications clearly help (2 days off is not pretty). Communication with the doctors makes me feel like Im complaining all the time, I feel a burdon to my friends and family when my joints are so sore it hurts to walk. I sometimes just sit in pain because there is nothing further than the therapies I already do. Perhaps this is due to the quick visits, and copious amounts of work that health professionals have to do? <br /><br />Regardless there are now APPS that are on phones that can track your flares/ symptoms and that show what factors play a part in causing issues. I use the App called SYMPLE it can be catered to your symptoms and can be downloaded into a graph showing your doctor/Rheumy where you are flaring.... because on the spot you may feel fine but a few weeks ago withering in pain. <br /><br />Springdaynoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-13118418655086806162013-09-06T18:24:00.304-04:002013-09-06T18:24:00.304-04:00Carrie have you tried aqua therapy or acupuncture ...Carrie have you tried aqua therapy or acupuncture it helped me beforeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-50175482300405553892013-09-06T18:19:18.485-04:002013-09-06T18:19:18.485-04:00Also the cirrhosis was caused by all the meds I ha...Also the cirrhosis was caused by all the meds I have taken in the past. I do not drink at allAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-16950025606305859332013-09-06T18:15:10.592-04:002013-09-06T18:15:10.592-04:00Im in the worse flare up right now! Several month...Im in the worse flare up right now! Several months ago I had a hernia surgery and while in there they found cirrhosis of my liver. They have DC all my meds and I'm miserable. I'm depressed, fatigue, pain unbelievable and my rashes are all over my body now. I can't sleep because of the pain so I walk arround like a zombie now. I had to quit my job I can't stand the pain.they are trying to figure out what to give me but nothing so far. When I tell my Drs they tell me there isn't much they can do????? I don't know how much more I can take of this!!!!! I love the list idea because half the time I don't tell them much because I don't think they can do anything for meAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-57225098815169474682013-09-06T17:35:44.479-04:002013-09-06T17:35:44.479-04:00I have found in the 39 years of having Lupus most ...I have found in the 39 years of having Lupus most of the time it doesn't do any good to tell them!! I feel like I'm wasting my breath!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-25822617880831824832013-09-06T16:09:29.622-04:002013-09-06T16:09:29.622-04:00Right. That's what I say.. one its like I feel...Right. That's what I say.. one its like I feel all 8 of my doctors get sick of me. 2 others have it worse then me. 3 ppl must get sick of me and my many problems. AND REALLY AS LONG AS I CAN MOVE I AM OKAY..IS THE WAY I SEE IT. I GET TOLD BY FAMILY ITS NOT ALL ABOUT ME, I do do a lot I don't just lay around..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-43853822901694719802013-09-06T15:46:24.820-04:002013-09-06T15:46:24.820-04:00Plzzzzz share more info.... I'm not able to fi...Plzzzzz share more info.... I'm not able to find this app as of yet.....vanessanoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-45386732479635560072013-09-06T15:44:00.796-04:002013-09-06T15:44:00.796-04:00I am a firefighter an EMT i am new to the lupus di...I am a firefighter an EMT i am new to the lupus diagnosis. I have seen several specialists and were told i can not take lupus medications due to the fact they compromise my immune system. I take narcotic pain meds or muscle relaxers but only once in a great while due to my job. I am tired all the time my muscles cramp daily. My joints swell and are painful with movement. I just deal with it, i guess i have no other choice I am trying to find other treatments. There has to be something out there, i also only have redness in the butterfly shape on my face not a rash. I have psoriasis on only one knee but only during high stress. Any suggestion would help greatly i am over paying high priced specialist fees for no help. Carrienoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-17733415780486770062013-09-06T15:43:43.062-04:002013-09-06T15:43:43.062-04:00I know that I try to be honest with my doctor when...I know that I try to be honest with my doctor when reporting on symptoms and flare-ups, but I've also been conditioned to hold a lot back after many years of family, friends, employers, and even other doctors accusing me of being a hypochondriac, or exaggerating, or even flat out lying about how much pain I feel or how extremely tired I am. I think keeping a daily journal is a terrific idea, if the doctor is willing to take the time to actually go through it with you. I often feel so very alone in dealing with what is happening to me, and in trying to communicate it to others, even medical professionals, it is almost like I am somehow wasting their time, complaining just for the sake of complaining. After several decades of just *sucking it up* it is not easy to get out of that mindset.Denise M.noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-79000747788412561972013-09-06T15:26:16.635-04:002013-09-06T15:26:16.635-04:00Recently, I began writing daily notes on how I'...Recently, I began writing daily notes on how I'm feeling in Google Calendar. I print out my notes from the last visit to the next and bring them with me to my Rheumatologist. He has found this very helpful in my treatment. He keeps a copy of my notes and adds them to the chart each visit. Lanettehttps://www.blogger.com/profile/05443361183149941739noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-36847111774800027512013-09-06T12:18:02.754-04:002013-09-06T12:18:02.754-04:00Reporting how things have gone for the past severa...Reporting how things have gone for the past several months is a good idea. But I find that with my Rheumatologist (she is a very busy but brilliant physician/researcher), if I am seeming to be well at the time, she doesn't particularly seem to listen to what I have to say regarding historical experience. Oftimes I feel because I mostly have mild SLE, her heart isn't really in taking care of me. So even if there is a good tool, the doctor would have to listen and care about it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-29547234885378957272013-09-06T00:46:40.860-04:002013-09-06T00:46:40.860-04:00I have been to a number of rheumatologists. They ...I have been to a number of rheumatologists. They all ask about a rash. I don't have a rash that shows unless I am warm. My rash is just capillaries that have grown close to the surface of the skin. That rash is the LEAST of my problems--it is not a problem at all, actually. I have also been to three different support groups, and a number of lupus-related gatherings, and I have NEVER seen a person with an obvious rash. When I said that to my latest rheumatologist, she said, "I haven't either." But still, at every visit, she asks about a rash. It makes me want to scream. <br /><br />Why doesn't she ask:<br />1. How many days per week/month do you feel like you want to do nothing but lie in bed?<br /><br />2. On "good days," how many hours do you need to rest, or how many times do you need to rest?<br /><br />3. If you were not taking pain pills, where would it hurt most?<br /><br />If I spent much time in the sun, I would, I think, look pretty red, and in time, I think, those capillaries might start growing on top of each other and result in something more than just redness. But I know better. I stay out of the sun, I wear big hats, and I use sunscreen--not because I get red in the face, but because five or ten minutes in the sun puts me in bed for a day or two or three, feeling really sick and unable to do anything without forcing myself to do it. <br /><br />I think questions about a rash could be helpful for the initial diagnosis. Before I knew what was wrong with me, I had developed a very red throat and neck and wondered why. (I didn't have it on my face because I had noticed, years before, that the sun was doing bad things to my face and I started using face sunscreens every day.) After I was diagnosed, and learned to stay out of the sun, the red throat gradually disappeared. <br /><br />So, please, can we put the "rash" in perspective?<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-60387865984129380992013-09-05T18:27:57.976-04:002013-09-05T18:27:57.976-04:00Thank you all so much for your comments so far!
...Thank you all so much for your comments so far! <br /><br />@Anonymous 9/5/13 6:21pm: people with lupus do see dermatologists as part of their healthcare teams. Sophie - LFAhttp://www.lupus.orgnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-45848686941842543362013-09-05T18:21:48.116-04:002013-09-05T18:21:48.116-04:00One of my husband's biggest problems is with h...One of my husband's biggest problems is with his skin. But when he mentions it to his rheumatologist, she tells him to see a dermatologist. Is this the usual response?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-32760867184978298532013-09-05T16:42:48.263-04:002013-09-05T16:42:48.263-04:00Barb Ignatowicz,
My rheumatologist does the same ...Barb Ignatowicz,<br /><br />My rheumatologist does the same thing. He said it is more helpful than anything else in tracking progress. Lab results don't always tell the whole story; blood counts can't say how you're feeling. With conditions like this, how you're feeling is the best indicator. Anonymoushttps://www.blogger.com/profile/13350841030899114262noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-72515972312613876212013-09-05T16:38:30.133-04:002013-09-05T16:38:30.133-04:00Janine Lane,
A few weeks ago I was reading about ...Janine Lane,<br /><br />A few weeks ago I was reading about a new medication and ended up on the GlaxoSmithKline website. I signed up for this free journal tracker thing for lupus patients. (I threw everything else away, mostly brochures for meds I don't take.) Anyway, it's actually quite helpful; has lots of different suggestions. One that I have found to be helpful, is the red and green stickers. You just put a red dot on the calendar for a bad day, a green one for a good day. That way, you can just open it to the month and have a quick glance so you can get straight to the details of why you were having a red day. (If that makes sense.) You could do something similar on just a regular calendar, too.Anonymoushttps://www.blogger.com/profile/13350841030899114262noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-85023665093055578672013-09-05T12:20:41.255-04:002013-09-05T12:20:41.255-04:00I think the idea of a standard tool to help SLE pa...I think the idea of a standard tool to help SLE patients monitor their disease is an excellent idea. Part of the reason patients say I'm doing ok is most of us were raised to soldier on and not focus on pains & symptoms (told focusing only makes them worse) so by the time your doctors appointment rolls around it is hard to recall what and when.<br /><br />I often resolve to journal my health status but usually discontinue it after about a week. Plus what doctor wants to read 1-3 months worth of journaled pain and other symptoms. Hopefully any tracking mechanism would also include the capacity to aggregate the data and determine meaningful patterns for patients.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-49045561736530729502013-09-05T09:58:28.831-04:002013-09-05T09:58:28.831-04:00For the last couple years, my rheumatologist has u...For the last couple years, my rheumatologist has used a check box/circle survey that has to be filled out before each appointment. It's detailed with location of pain, pain level, general symptoms, personal changes that might cause stress and flares. I get annoyed having to fill it out each time, but realize now she is on the right track for better diagnosis. <br /><br />My difficulty as a patient is trying to distinguish symptoms between RA/SLE, Crohn's, and Stage II Kidney disease...one tends to annoy the other. I deal with 5 specialists and each has their own way of communicating...usually just talking. I always have a list of questions ready before I go. <br /><br />Since I'm not too successful matching symptoms with specialist, I've found it's better for me to use my rheumatologist to direct my care to other doctors since I normally see her the most. <br /><br />Barb Ignatowicznoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-67640257461145409692013-09-05T09:32:34.671-04:002013-09-05T09:32:34.671-04:00I think a check list would be great to track sympt...I think a check list would be great to track symptoms. Also, more reaching from support systems. My rheumatologist, Dr.Cory Pittman is fabulous. He looked at all my symptoms and my history and diagnosed me. It has been a very rough path! I am just starting to have more good days than bad. I was diagnosed in January 2013. I am past the normal age group. <br />I have a great health care team, rheumatologist, hematologist and primary care doctor-they work together and are trying to get me to a less symptomatic life of lupus.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-41703497922561156352013-09-05T09:06:01.515-04:002013-09-05T09:06:01.515-04:00I promise myself after every rheumatologist visit ...I promise myself after every rheumatologist visit that I am going to track my symptoms better, as I tend to do exactly what Cindy Cooney said and only remember the most current symptoms. I would like an app with a body diagram so I could mark where the pain/discomfort is and what level of pain (1-10). Janine Lanenoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-44103530637684718532013-09-05T07:07:49.104-04:002013-09-05T07:07:49.104-04:00Stacy Reynolds,
They can do a lot more than put y...Stacy Reynolds,<br /><br />They can do a lot more than put you on medications! Especially if you're treated by a rheumatologist. Rheumatologists see all different kinds of patients with all different kinds of symptoms--as well as solutions. If your doctor knows you're having a particular problem, for instance, difficulty sleeping or photo sensitivity, he knows how other patients may deal with those issues and can offer suggestions on how to better manage them. Also, telling your doctor everything that's going on gives a more accurate accounting of your disease progress, which can be helpful for future treatment plans. If you explain how you're actually feeling, your rheumatologist has more information to create a treatment plan that is most effective for you. It's equally important your doctor knows how your lupus manifests itself so complications can be found and treated before getting out of hand. Plus, there's the added benefit of helping other patients; having all the information is how doctors discover patterns, which leads to a better understanding of all the problems lupus can cause and how best to handle them. Good luck!Anonymoushttps://www.blogger.com/profile/13350841030899114262noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-59704386344890895062013-09-04T21:39:12.143-04:002013-09-04T21:39:12.143-04:00I have lots of flare ups. In fact, I think I migh...I have lots of flare ups. In fact, I think I might chronically be in a flare up. But I am not as bad as I was before I started my lupus medication, so it must be working, right? So when my doctor asks how I am I say "OK. I feel better." What more can they do than put you on lupus meds?Anonymoushttps://www.blogger.com/profile/02950349607949981758noreply@blogger.com