View Full Version : Hello..... my hubby found this site last night.
04-27-2011, 07:58 PM
I got a call from my doctors office, and was told that I have been diagnosed with Lupus. They are requesting a referral to a specialist. I know very little to nothing about Lupus. I was told a couple years ago that I had FibroMy which seemed to be getting worse and worse, which I suspected was due to stress, so this diagnosis sort came out of left field.
I'm married, have one daughter, one step-daughter and one step-son, plus three (former) step daughters that are still very much a part of my family. We have three grand children. I am into interior decorating, true crime, yarn crafts, reading, riding motorcycles (on the back with hubby) and water (rivers, water parks, beach, ocean, streams, water....... period).
I am looking forward to learning and sharing and knowing.
Hi there! I bet I know who your husband is! He told us about your love of the bikes and the outdoors. I am really glad that you both found us and I hope that we can be of some help to you.
Many of us go through a long period of being ill and being told that we have fibro (which many of us do), depression and a host of other things long before we actually get a diagnosis of Lupus. Many of us actually have those things but they go along with the Auto Immune issues not instead of them. Because we are ill for so long before we find out exactly what is making us ill we often do the exact things that make us worse or flare as we call it. The good news is that knowing what you have will allow you to figure out what things cause you to get worse and what things to do that will help you feel better.
The most important thing that I want to share with you is this: You are not lazy because you sleep so much. You are not depressed because you can't get out of bed (well, depression often goes along with Lupus but that is another topic). You are not a hypochondriac because there always seems to be something wrong. There is life with Lupus. It may take a bit of time to figure out exactly what things work for you and what makes it worse but you will most likely figure it out. Listen to your doctors. Take your medications and although life will be a bit different you will be able to enjoy that family that you love so much
Welcome to our WHL family! I look forward to getting to know you and please do not hesitate to contact me if there is anything that I can help with.
04-27-2011, 09:31 PM
Welcome to WHL. I posted on your hubby's thread. He's a real sweetie to be so concerned and involved. Keep doing what you have started and learn together about what is going on with you. As I told your hubby, you can learn to deal with this stuff and still have a fun life.
You two sound much like Jeff and I. We have five grown children - 4 girls and a boy, and three wonderful grandsons. I hurt and I have to move slowly, but we still travel and have fun. We live just north of you - on the Monterey Bay. I've only lived here a year and a half, but I really love California.
Keep in touch, and I hope that we are able to help you both and answer questions as they come up.
04-28-2011, 03:14 AM
Welcome to our lovely family of the WHL and it's lovely to have you with us, there's so many threads to venture through and you'll learn so much about the condition, my hubby found the site for me also while i was sleeping.lol and it was the best thing i did joining they're terrific people on here so you won't go wrong with advice.
You'll know more when you see a rheumo and more bloods are took as there's A1 Diseases and autoimmune Diseases also, it can be abit of a nightmare, as i can see you love your out sports but it's according to if it affects your skin, some people it does and they have bad flares such as myself but until you see a specialist just be careful concerning the heat.
~Hugs Terri~ xxx
04-28-2011, 06:53 AM
Hello Nanc, And so glad to have you here. I like your self was also years ago first diagnosed with fibro MY witch also kept getting worser and worser as the years passed by. Till all my
autoimmuine diseases started overlapping and progressing very fast and took dr's years and lots of test and blood work to get it all sorted out. I also love the outdoors and river's and flower gardening. There are lot's of very wonderful people here and lot's of information.
Hope you have a great day! ~Diane~
04-28-2011, 08:50 AM
Welcome to the family! I found this site a few months ago immediately after my diagnosis and it has ben very helpful. Please ask questions whenever you have them as someone likely has an idea of how to find the answer if not already has the answer to share with you.
Linda From Australia
04-28-2011, 11:29 AM
Isn't your husband wonderful and supportive. Your journey into increasing your knowledge about Lupus will help you to understand your disease a lot better and feel postive about some of the changes you will go through. If you are after any information, just ask us and we can post a link for you to read some of the threads.
04-29-2011, 01:01 AM
I am so glad that you husband found us and that you joined us. Many of us suffered for years before we were finally diagnosed and/or we've gone through being mis-diagnosed or flat out dismissed!
You are doing one of the most important things that you can do in order to understand and manage your illness....Educating yourself about Lupus, its symptoms, how it affects your personally, its medications and their uses/side effects, and, and what you can do to avoid a flare-up.
You will find that everyone here is more than happy to help you in any way that we can and we want you to know that you are not alone :-)
Peace and Blessings
04-29-2011, 09:44 PM
Thank you all for writing to me. I am sad and mad..... I am mad because I have suffered with all kinds of symptoms that should have lead my doctor to testing for Lupus. Just from the information here and at a few medical sites, I see things that my doc should have recognized my problems as leaning towards a diagnosis of Lupus. I am crying and very angry right now. I have looked into the eyes of my family, employer/ co-workers, friends and medical / hospital staff and seen their disbelief in my symptoms. I have known that they think that I am a hypochondriac, prescription drug abuser, constant complainer seeking attention, poor employee who abuses sick leave and vacation policy, and much, much more. I've done everything I can to conceal my pain, my problems, my embarrassment, my shame, so as not to disappoint others. I've taken on things I prayed I could do, only to fail and feel stupid and careless, sickly and worthless. My whole life changed the last ten years. I went from this super woman, multi-tasker who could do it all... to this sad, slow, scared, failure who has actually thought that it might be easier to pass away from an illness then fight on through this life. (Don't get me wrong, I am NOT suicidal, just tired of disappointment others and myself. I haven't seen the specialist yet..... I'm sure that will give me a bright side to see, right now, I'm just sad and mad, but thankful for finding support on here. Nancy
04-29-2011, 10:37 PM
Welcome to our large WHL family, you'll find everyone here very supportive.
You're background is soooo me, like you I loved motorcycling with my husband and we did several long trips in Western Australia before the arthritis I suffer made it to hard to get on and off - however our motorcycle club have been great and I still enjoy being part of their events even if I have to drive, I've become the support crew.
Our family has always been very involved in athletics and its only since I joined WHL that I've realised the bouts of extreme tiredness I experience often happen after I've spent time standing by race tracks or at finishing lines, obviously that nearly always involves sun here in Australia.
I was one of the lucky ones and was diagnosed fairly quickly( but only given a life expectancy of approx 10years -I'm still here 45 years later and intend to be round for some time yet) and then I was very fortunate to have my high school sweet heart stand by me through thick and thin, we had a son and adopted a daughter and now have 6 grandchildren. Life did'nt turn out as I expected and the roads had its ups and downs but I'm thankful for all the good times and great people I've met on the journey. You're husband sounds a wonderful caring man and I'm sure that you'll both work through this uncertain intial stage and with the help of medication continue to enjoy your family and interests. The hardest part for you like it was for me will be to come to terms with the fact that we have to SLOW down reduce our commitments and let others help us.
My thoughts are with you and you husband. Remember if you have questions or concerns this agreat place to ask about them
04-30-2011, 02:55 AM
Thank you all for writing to me. I am sad and mad..... I am mad because I have suffered with all kinds of symptoms that should have lead my doctor to testing for Lupus. Just from the information here and at a few medical sites, I see things that my doc should have recognized my problems as leaning towards a diagnosis of Lupus. I am crying and very angry right now. I have looked into the eyes of my family, employer/ co-workers, friends and medical / hospital staff and seen their disbelief in my symptoms. I have known that they think that I am a hypochondriac, prescription drug abuser, constant complainer seeking attention, poor employee who abuses sick leave and vacation policy, and much, much more. I've done everything I can to conceal my pain, my problems, my embarrassment, my shame, so as not to disappoint others. I've taken on things I prayed I could do, only to fail and feel stupid and careless, sickly and worthless. My whole life changed the last ten years. I went from this super woman, multi-tasker who could do it all... to this sad, slow, scared, failure who has actually thought that it might be easier to pass away from an illness then fight on through this life. (Don't get me wrong, I am NOT suicidal, just tired of disappointment others and myself. I haven't seen the specialist yet..... I'm sure that will give me a bright side to see, right now, I'm just sad and mad, but thankful for finding support on here. NancyHello Nancy,
Your like me in a way mad about them not taking bloods just one step furthur, i started feeling affects from my raynauds at 5yrs old constantley cold, then at 14yrs old started having autissum i'd do thing's and had'nt got a clue what i'd done, then at 18yrs 2 lots of seizure's broke out, then in my early 20's to bad strokes which layed me up for 4yrs then bad DVT and loads more but it was'nt till 4yrs back when my skin broke out and went bad that my dermo did some blood test's and told me i had raynauds, then refered me onto is client in rheumo and loads of bloods and x-rays was done and bingo i have what you see in my signature A1 Diseases over lapping Autoimmune Diseases and then i'm told i was born with it because i have to see a psychiatrist for my manic depression his words was you have good grounds for taking them for neglect but i can't be bothered because just rising from my bed each morning is enough for me to cope with never mind anything else.
You'll most likely need time off work alot of member's have to and i'm 42 and used to be quite active 4yrs ago and now my lifes at such a slow pace it's unbelieveable and the amount of crying i do i mays well work for severn trent and supply people's water.
Just remember this YOUR NEVER ALONE and come on when your down and vent away, at least your with people who care and who are going through the same as yourself.
~Hugs & Kisses to you~ Terri xxx