Things will start to look a bit different around here, and I hope it will be a change for the better. When I started lupusfamily.com a few years ago, I wanted to do something that might make a difference, even if it was just a small one. It made a difference for me, at least. However, as time has gone by, I find that I have less to say about my wife’s lupus. It’s not that it’s not a problem anymore. It certainly is still a big problem, but we’ve gotten used to dealing with it.
I was thinking about just shutting the site down. It costs me about $100 bucks a year to keep it up, and there are many great services out there that offer free host services for bloggers. I still feel like the site could make a difference if it didn’t rely so much on my input, but was rather a community of people with common problems and questions.
I called the site lupusfamily for a reason. Lupus has an effect on an entire family. I know that there are spouses out there that don’t understand their wife’s lupus. I know how difficult it is to talk to your children about why mommy is sick all the time. I can’t tell you how many times I’ve had to explain to coworkers how lupus works and why their friend who has lupus and doesn’t have any problems at all is not like the people I know that have lupus. I don’t mind answering their questions.
That’s what the site change is really all about I suppose. I would like to find some other husbands that deal with what I do every day. I would like to hear from my wife’s sisters about how they deal with lupus. They’ve been very supportive, but I know they had a hard time dealing with it at first. I would like to answer questions and get into some discussions, rather than just put out a post every week. I would like lupusfamily.com to really be a family.
Who knows? The site may crash with all the new features. I’ll do my best to moderate and modify the site as people start using it. Let’s just see what we can do together.
I apologize if I deleted any users that were actual users. There were so many spam users that I had to delete most of the subscriber accounts.
Hi. I just need to talk with people who have lupus or autoimmune illness. For at least twenty yrs I’ve always thought I had lupus or some kind of connective tissue disorder. My bloodwork was normal until four yrs ago when my ANA was slightly elevated with nucleolar pattern, scl -70 was elevated. They said these tests were too low and inconclusive. A few months ago I had a rash biopsied which has been coming & going since my teenage yrs that is associated with muscle pain and weakness. Finally after begging the derm for many many years to biopsy this rash which appears on my fingers, elbows, knees, neck, ears & face, it came back as either lupus or dermatomyositis. They continued to do the same blood tests which came back with same results & same responses from drs. – “inconclusive”. Finally the weakness and joint pain became so severe I couldn’t walk up stairs or hold a hairbrush so I went to one of the best medical centers in the country. Dr. there said he thinks it is lupus and/or dermatomyositis that may be caused by lupus or scleroderma, My biggest problem of all is not actually the symptoms. Yes, the severe chest pains caused by chronic pleuritis and pericarditis and pain in my kidney which continues to become more & more scarred from “mysterious” inflammation and seizures/vertigo which is so severe I feel impaired when I drive, chronic sinus infections & bronchitis, breathing troubles, “mysterious lung inflammation”, difficulty swallowing, joint pain, low-grade fevers, just to name a few …. my biggest problem is with my family & friends. Because drs., have not yet diagnosed me & this has been ongoing for twenty yrs but getting worse over time, no one believes me. They tell me it’s all caused by anxiety. I am incredibly functional in comparison to how I feel every day. They think I look fine (although my appearance has changed for the worse dramatically). They view this as “She looks fine, so she must be okay”. One friend told me to stop talking about my ailments until I am diagnosed with something “real”, as she continues to talk non-stop about all her “real” medical problems. I simply just need a friend to share with. I rarely talk about my sickness because I don’t want to draw attention to it. When I talk about it, that means I’m feeling really sick that day. My father said I’m imagining all my symptoms. The people I work with say I’m depressed even though I never ever show signs of depression. They think I’m lying about all of the above like I’m a pathological lier or something. My husband lives with me and knows I’m not depressed and that all these symptoms are very real & sometimes very scary, He is the only person who believes & defends me. This is my struggle right now. It’s waiting for a diagnosis while I go through many tests and hearing remarks from my so-called friends and family that “it’s all in my head”. I am now not speaking to anyone because I feel their comments are extremely hurtful and cause my symptoms to worsten. I feel very alone as I miss them, but don’t know what else to do, which is why I’ve turned to the internet for advice and friendship from people with the illness who know that it is “not in my head”. Thanks so much for listening. I feel better just venting about this. I appreciate the effort you put into making this web-site.
I think this new format is very cool
A few days ago my Dr. asked if I had been tested for Lupus. I said No and I don’t know what it is. She wrote a referral for a blood test which I had today and the Pathologist said the results will come in around a week. I have come online to find out a bit about Lupus. I signed up here when I saw Posts about sweating. For several years I have been sweating from my head, torso and thighs. Not under my arms or anywhere else. I have to change my nightclothes up to 4 times at night and I actually ordered a waterproof mattress protector today. The idea is that the sweat goes into the sheet and you stay dry. I hope it works. As I went through the symptoms I was amazed to find myself saying YES to every symptom listed. Even the lung disease I had from a young childl and there was improvement after surgery. I have had pericarditis and recently my heart enlarged etc etc. I had thought I might have chronic fatigue syndrome because of the extreme exhaustion I get. Whatever, I would be pleased in a way to be diagnosed with Lupus because that would show a reason for all these ailments and maybe there would be something out there to get rid of the symptoms – I hope!
Thankyou for starting the Lupus Family Jeff. I have a lot of reading to do before I can say I know what Lupus is.
I’m glad you found your way here. Sometimes it does feel good just to get an answer for what’s going on. Some people go years without a diagnosis. I think you’ve asked a great question that many people would like to talk about, when you ask, “What is lupus?” I think I will start a discussion thread on that topic.
It is nice to have a forum specific to our health issues and a place for friends and family to find support and have the opportunity to relate to others in their position. I enjoy using Face Book but sometimes I don’t want to broadcast my health issues.Tthere are still so many people who don’t understand. Any way, thank you.
Thanks for writing Jenny. I wrote back and then the message disappeared so I don’t know if you got it. I left Facebook and don’t want to re join for Privacy reasons.
I will enjoy Jeff’s thread “What is Lupus” because it sounds quite mysterious to me.
Jeff,
In 2006, I suffered a rare form of stroke called AVM. I couldn’t find the support I was looking for so I created a community called http://www.AVMSurvivors.org.
Following the success of http://www.AVMSurvivors.org, I have been on a mission to create more rare disease communities under the umbrella site http://www.BensFriends.org.
To learn about one of these communities: http://www.youtube.com/watch?v=ARJMQ4zlsrk.
I see you that you have tried to do a lot for sufferers of lupus and I wanted to know if you were interested in helping us launch a patient community for lupus. We’d love your contribution.
To learn more:
http://www.BensFriends.org
http://blog.BensFriends.org
Please join me in changing the lives of rare disease patients.
Best,
Ben Munoz
ben@bensfriends.org
Hi Jeff – my buddy stumbled across your blog. We run patient support networks – http://www.bensfriends.org – would you like us to start one for Lupus?
Well, I’m already trying to start a lupus support network, but I will leave up the link. People need all the support they can get.
I’m familiar with Lupus, my mother had it and my sister struggles with Lupus symptoms., I hope to start a support site for people with Lupus and other Auto Immune diseases. I’ll keep you posted.
John Colyer
Thanks Jeff for all you do. Hope is an amazing gift you give so many of us. I see Lupus from me having it for 20 years now and my husband has been dealing with Lupus for 20 years too. I fight for him and my son because my family just doesn’t understand that there is not the magical doctor or drug I need to find “to just get over this”. I pray the this is blessing them somehow but I have to let go on the rude things some have said. I pray they or their children never know what we live with. It now is running in our family, We are up to 5 plus family members and that is scary too.
Hi im trying to find out if anyone or their spouses have the itching problem dealing with their lupus. My wife has been complaining for about 2 months now and has been going back and forth to the doctor. We have tried the benadryl but no success is there anything we can do the help relieve this pain.
new to this roup and hoping it will help. we all know that lupus sucks and we suffer. but that about orspouses or partners? i know it comes between my husband and i all the time. i’m quite surprised were still together.
I have found this site by chance. I think it is a piece of art and shouldn’t be abandoned.
I suffer from lupus, myself… I, too, downplayed it’s significance for years. I am lucky to not have life threatening symptoms. Yet, my lupus is very active in many ways…
Lupus is so misunderstood. I have been diagnosed as systemic without major organs in question to this point.
I am thankful for finding this site. And may find myself as a regular poster.
God Bless…
I have found Clobetasol to be useful for soothing large lesions and relieving the itch of smaller spots. It is available by prescription. A dermatologist prescribed mine. However, I would think if you brought it up with a PCP, he/she would prescribe it for your partner.