tag:blogger.com,1999:blog-3528324373828710021.comments2023-12-12T05:32:26.596-05:00Lupus, Humor, and WellnessCarla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.comBlogger450125tag:blogger.com,1999:blog-3528324373828710021.post-43813619634045751402013-05-09T02:25:21.037-04:002013-05-09T02:25:21.037-04:00thanks for coming back and letting us know. I'...thanks for coming back and letting us know. I'm sorry for your horrible adventure through all that! but glad you found something safer and that gets you compliments!Carla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-54551251909190213652013-05-02T01:16:28.617-04:002013-05-02T01:16:28.617-04:00The extensions went horrible I got fusion (bonds) ...The extensions went horrible I got fusion (bonds) and I guess my own hair wasn't strong enough so it will simply fall off. Gave me a couple of bald spots and came out of it with shorter hair. Clips are working well and gets me compliments. XoxoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-84304643547278325502013-04-20T14:01:12.794-04:002013-04-20T14:01:12.794-04:00630 Carla, you are an amazing wife and performer.....630 Carla, you are an amazing wife and performer.. Your advice on how to visit a person in the hospital is perfect!! I especially like the part of bringing food/ice cream whatever the patient asks for!!! Sorry to hear about Joe having blood clots.. I love your music and my husband does too.. You are just a fantastic performer and your shows always cheer me up.. Nance from Parsippany, NJ Keep well!Anonymoushttps://www.blogger.com/profile/04000771876669623703noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-66381115271923368782013-04-20T13:56:21.962-04:002013-04-20T13:56:21.962-04:00Carla, you are an amazing person and all around gr...Carla, you are an amazing person and all around great wife and musician. I love your music and hope to see you again in New Jersey.. You gave some great tips on how to visit someone in the hospital.. Especially about what someone can bring.. In my case, it was good ice cream every day. Food was really terrible at Denville, NJ hospital.. Take care. Hope Joe stays healthy.. You two make a fantastic team.. Nance from Parsippany, NJ <br />Anonymoushttps://www.blogger.com/profile/04000771876669623703noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-89468629188836552592013-03-29T05:19:24.690-04:002013-03-29T05:19:24.690-04:00Really your post is really very good and I appreci...Really your post is really very good and I appreciate it. It’s hard to sort the good from the bad sometimes, You write very well which is amazing. I really impressed by your post.ARM LIFThttp://www.zabox.net/Resources/arm-lift-arm-lift-surgery-in-mexico/noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-30140791591169426202013-03-27T00:51:08.809-04:002013-03-27T00:51:08.809-04:00Great tips Carla! You are a great patient advocate...Great tips Carla! You are a great patient advocate, thank you! And you would make a great nurse I am sure, if you could handle the blood and all :0). Sorry to hear about Joe! I hope he recovers completely and does well. Blood clots in the lungs can be scary, so glad to know he had/has a good doctor. Please tell him I said hello! cheers, ChipYour Daly Hughttps://www.blogger.com/profile/08649155351914244427noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-42212527190816179342013-03-14T12:46:43.308-04:002013-03-14T12:46:43.308-04:00Thanks for the suggestion- if this were a lupus ra...Thanks for the suggestion- if this were a lupus rash, or any kind of rash that was recurring/ ongoing, I would definitely be interested in looking into that.<br /><br />Thankfully, in my case this was just a one-time allergic reaction. One time because I sure won't ever take that drug again!Carla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-65717464163938306892013-03-13T11:30:31.449-04:002013-03-13T11:30:31.449-04:00Hello,
Just a suggestion - I have been taking Lora...Hello,<br />Just a suggestion - I have been taking Loratadine for several years to deal with my rash issues. If I stop taking it even for a few days I break out in horrible hives. But the Loratadine has kept my rash controlled and has kept me off the prednisone all together (which I love).Observations of a Crazy Worldhttps://www.blogger.com/profile/11150507246417259605noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-38814871782566628592013-02-18T13:17:42.429-05:002013-02-18T13:17:42.429-05:00Hey Carla,
You are beautiful, prednisone or no...Hey Carla,<br /><br /> You are beautiful, prednisone or no prednisone. But I am sure you already know that :0). Keep producing magic for the rest of us!<br />Love, ChipYour Daly Hughttps://www.blogger.com/profile/08649155351914244427noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-26530114251348700272013-02-17T02:40:36.568-05:002013-02-17T02:40:36.568-05:00I just wanted to say thank you for sharing this re...I just wanted to say thank you for sharing this really great infographic! I know that this is an autoimmune disease which may be misunderstood by some people, but an infographic like this could really help with that.Peter in Jacksonvillehttp://www.clinicaltrialsgps.com/noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-49509159475158170112013-02-15T11:39:32.930-05:002013-02-15T11:39:32.930-05:00I've been on prednisone for almost 2 years now...I've been on prednisone for almost 2 years now, and I hate the moon face! It's so frustrating. I look like I weigh 9 billion more lbs than I really do. I also am currently suffering from a heinous lupus rash. Mine's going on 7 months and is unresponsive to any steroid creams and also high dose prednisone. I'm jealous yours went away, but so glad to hear that it did! Gives me hope that they'll get mine figured out soon! Carolinehttps://www.blogger.com/profile/00202008053666792340noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-79705573139572728632013-02-12T18:35:09.126-05:002013-02-12T18:35:09.126-05:00Thank you so much Carla for your response I'm ...Thank you so much Carla for your response I'm defenatly going to look into these and I do believe in trying all healthy things before resulting in medicating leaving it the last thing I would have to turn to I hate prednisone it's just horrible ... Thank you again ill be checking in I don't go on the Internet to much thank you DestinyDestinynoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-68126934101453407372013-02-11T13:00:48.726-05:002013-02-11T13:00:48.726-05:00Prednisone is so not my friend. I do know I neede...Prednisone is so not my friend. I do know I needed it a few times with my lupus but it has caused some major changes in my body and weight. I am trying so hard to get back to a place where I can help myself. Just started a blog for my own personal therapy but if you would like to stop by I would love. Thanks for sharing.<br />http://lupustales.blogspot.com/auntpearlhttps://www.blogger.com/profile/18200555684340717816noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-33514683413879894042013-02-10T21:05:54.177-05:002013-02-10T21:05:54.177-05:00Hi there. I'm glad you wrote.
that wait to se...Hi there. I'm glad you wrote. <br />that wait to see the rheumatologist is so annoying. We have all been through it, suffering, anxious, confused... and waiting. I wish it weren't that way.<br /><br />there are a few forums where a lot of people chat that you might want to participate in. try looking at butyoudontlooksick.com and wehavelupus.com<br /><br />You'll find lots of interesting people and topics there. <br />Sjogren's is another autoimmune disease. It's not uncommon for people to have more than one autoimmune disease. Doctors for some reason these days are more likely to call something "mixed connective tissue disease" than "lupus" and I don't know why.<br /><br />for some very good info on lupus symptoms and diagnosis, look at lupus.org<br /><br />As far as the strange things with your daighter's eyes, it may just be migraines. Right before I get a migraine headache, i see all kinds of auras and zig zag patterns in my eyes and can't read or watch tv or look at the computer- basically can't really use my eyes til it passes. It always passes.<br /><br />As far as the diagnosis, trust your instincts. You know when something just isn't right.<br /><br />You may also be able to find a local lupus support group to attend while you're waiting for that appointment at lupus.org.<br /><br />Also consider there is a whole other line of thinking, beyond medications, for getting your health back once you're develope an autoimmune disease. Please check out this fantastic blog by a doctor who treats with diet and supplements: http://drhyman.com/blog/conditions-category/autoimmune-disorders/<br /><br /><br />My warmest wishes to all of you.<br />CarlaCarla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-47253707739505032482013-02-10T02:52:23.096-05:002013-02-10T02:52:23.096-05:00Hi
I never really go on these kind of blogs or si... Hi <br />I never really go on these kind of blogs or sights so I'm not even sure if I'm ok to post so I'm sorry if I'm not doing this right . I just accidentally came across you blog here while trying to find answers for my 15 year old daughter . My husband has diagnosed with lupus about 16 years ago . He was the top subject of the week in a learning hospital where he went through many test and even lymph nodes removal and Bone marrow biopsy then kidney biopsy so on .. We had no idea what it was or what was going on I told my nana ( grandma) about it to find that she as well has lupus so now I know it's coming from both sides of the family . Right now years later my 15 year old daughter has been going through anxiety attacks and depression and horrible fear of loosing her vision so she finally told me when I could tell something was wrong and she said she was seeing burst of white flower shaped lights and when things or people pass slowly by she would see white shadows trailing behind . She dose wear glasses and has a strong prescription . So we took her into an eye doctor and nothing then a CT scan it came out fine but I decited since there was lupus on both sides to check her for it so the first test I guess was a basic ANA test and I was not really expecting it to really come positive but it did so they then tested further wich where as fallowed SCL-70 antibody negative SM/RNP antibody 2.0 positive sjogren's antibody (SS-A) 1.3 positive but then sjogren's antibody (SS-B) negative and centromere B antibody negative .... Now right now I don't really know what all that means these are just test done by a regular family doctor that could not tell me much other than her lupus test showed negative but she was positive for sjogren's and mix connective tissue diseas ? She can not tell me about them and that I need to have her see a pediatric rheumatologist witch I figured . I have to await a month for that appointment so I guess I'm just reaching out for any knowledge of the test results and this sjogren's it just doesn't seem to match up right she dose not have those symptoms :( Destinynoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-57780911374560274652013-02-10T00:55:46.055-05:002013-02-10T00:55:46.055-05:00Indeed, we do,Indeed, we do,Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-8967898483392888252013-02-09T21:50:47.838-05:002013-02-09T21:50:47.838-05:00thanks for your thoughtful response. We all learn ...thanks for your thoughtful response. We all learn from each other's different points of view.Carla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-348736090328039842013-02-09T20:09:23.571-05:002013-02-09T20:09:23.571-05:00I'm sorry, I wasn't trying to make light o...I'm sorry, I wasn't trying to make light of your situation. Just expressing a point, albeit in a less than friendly manner I think (now that I've reread what I wrote). Lupus is certainly a very serious and complicated disease. Diagnosis seems to be equally as complicated.<br /><br />Before House, M.D., I had never even heard of Lupus. I've since done a lot of digging to try to understand what exactly Lupus is and the like. I'm sure others have learned of it in the same manner. In this way, I view it as a positive thing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-38200945800760808062013-02-02T14:28:23.194-05:002013-02-02T14:28:23.194-05:00I'm starting to think from this comment thread...I'm starting to think from this comment thread that this "it's never lupus" thing is funny to everyone except people who have lupus. In which case, I'm not looking at it "all wrong," I'm looking at it from the point of view of someone who suffers from a very serious disease and almost died from it. It took me 2 years to get diagnosed, getting sicker and sicker while going from doctor to doctor trying to get a diagnosis- and that 2-3 year wait for a diagnosis of lupus is not uncommon.Carla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-21348178106234347302013-02-02T14:24:38.418-05:002013-02-02T14:24:38.418-05:00well that is another point of view. Thank you for ...well that is another point of view. Thank you for your comment.<br /><br />there's a saying in show biz that there's no such thing as bad publicity. So having lupus mentioned, even in the context of it never being an accurate diagnosis, at least gets it mentioned?<br /><br />still... it's very tiresome when people find out you have lupus and their response is "it's never lupus!" ha. ha. ha.Carla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-30385123887003014412013-02-01T22:57:22.760-05:002013-02-01T22:57:22.760-05:00You're looking at this all wrong, IMO. “It'...You're looking at this all wrong, IMO. “It's Never Lupus!” was never intended to be funny. House, M.D. was recognized by a Lupus Advocacy Group for raising awareness of the disease. I would say that is a positive thing...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-15978929263657721892013-01-29T12:26:03.630-05:002013-01-29T12:26:03.630-05:00you are amazing! one of the MOST determined peopl...you are amazing! one of the MOST determined people I know! thanks for the inspiration! :)<br />laurie mcdonoughnoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-38253355020409312832013-01-26T15:38:05.066-05:002013-01-26T15:38:05.066-05:00Hi Lisa- I'm so sorry about your hair. It must...Hi Lisa- I'm so sorry about your hair. It must be even tougher being a hairdresser. At one time I wore a wig to cover my hair loss, but my hair has always grown back to its full thickness once I got the lupus under control and got off the drugs. My understanding is that placquenil can cause hair loss. So can lupus.<br />You might consider doing what i did, and going on a gluten-free dairy-free diet. When I did that, all my lupus tests went negative and I was able to get off the lupus drugs. Try going gluten free and dairy free for 7 days. On the 8th day, eat a normal amount of both gluten and dairy. If you have a reaction of some sort, like rashes or joint pain or headaches, then you are allergic to those foods and that could be the root of your autoimmune problems. A gluten free dairy free diet is what I do to keep the lupus tests negative, stay off the drugs, and keep my hair. love and well wishes to you. CarlaCarla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-62359904567849301392013-01-22T21:46:13.699-05:002013-01-22T21:46:13.699-05:00Hey....my name is Lisa. I have lupus as well. I...Hey....my name is Lisa. I have lupus as well. I'm 49 and was diagnosed @ 48. I am grateful to say my lupus is not chronic. I take 1 pill a day ( hydroxychloroquine ) , generic for plaquenil...200mg. My hair is thinning on the edges & in the middle. It depresses me terribly. I'm a hair stylist & sad to say ...... I have not found anything tht works. I jus started using Biotin. As well as other hair, nail & skin vitamins. I cry @ times becuz I look in the mirror and my hair is disappearing day by day. <br /><br />Thank you for your ideas w/the flax seed oil. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-24114874998075042142013-01-20T22:26:52.186-05:002013-01-20T22:26:52.186-05:00I myself have celiac and my rheumatologist suspect... I myself have celiac and my rheumatologist suspect lupus. So gluten is problematic for me, I have been gluten free for several years, anyhow I recently had a gluten cross reactivity blood test and found that i have many foods that i am allergic to. Apparently there are many foods that your body reacts to as if they were gluten. I am allergic to rice, sesame, hemp, quinoa, etc. all stuff i ate regularly on a gluten free diet, causing a lot of damaging inflammation. I definitely feel better since removing these additional allergens. So I hope this could be useful to others. Google "gluten cross reactive foods". Checkout cyrex labs they offer the test, the array 4 (and other interesting tests). This website explains it a little more and has a link to the blood test http://drbradyhurst.com/2011/03/10/breakthrough-in-gluten-intolerance-testing/?wpmp_tp=1. Hope this helps.Anonymousnoreply@blogger.com