Lupus Community

Hi Sharonbp and Welcome!

I have had lupus for 28 years.

Are there any specific questions you have about dealing with lupus? There are so many things you learn about yourself when you have this disease! I don't even know where to start!

There is a lot of good information in the Helpful Tips and Resources sections of this board (on the lower right hand side) that may help you.

Lupylisa

I was diagnoised with Lupus 22 years ago. The first advice my doctor gave me was "Don't go to the library and read every single piece of info about Lupus." Being that I love to research,at first I didn't understand his comment but now, years later, I know why. There are so many types of variations of the disorder that you may not, at this point, know how Lupus affects your body as a whole and....it is extremly overwhelming. The other fact I have experienced is that the issues aren't always consistent....AND stress can (key word~can, but not necesarily)add to the complications. I would be true to yourself and fuel your body with healthy foods, exercise, get plenty of rest and learn to say "no" to minimize overload. I am a "go-go" type of person so this has been very difficult for me to accept and learn. I have found if I "practice what I preach" I am a much more healthier person. I have been off my plaquenil for a year now and managing my flare ups on my own. You have come to a wonderful community of Lupies~ WELCOME!

Thank you so much for responding. I have a million questions and don't even know where to begin. How are you doing? How has your life been? What medications do you take for it? How old are you? I guess we can start with these and go from there. lol I am scared and really need someone to talk to. I was only diagnosed on 3/1/12 and I am still in shock I guess. Any info and words of encouragement will be greatly appreciated.

sharonbp

Well, I guess my first question would be why did you stop the plaquenil? Don't you need it to slow down the progression? I just started plaquenil today....enjoying the side affects. I would love to talk more if you have time. I was only diagnosed on 3/1/12 and am still in shock. Thank you.

Sharonbp:

I am 47 yrs old. I have lupus, fibromyalgia, sjogrens, raynauds and hypothyroid.

When I was first diagnosed with lupus, I was given sodium salicylate ( horse sized aspirin which is no longer available) and plaquenil. I was lucky to have a doctor who would only use steroids as a last resort. After my initial big flare subsided, I only took plaquenil for the next 13 years and did very well.

Then I got bit by a cat which nearly killed me (infection and cat scratch fever) and made my lupus flare big time. I was then diagnosed with stage 4 lupus nephritis (kidney involvement) and got really sick for several years. I started taking steroids and cellcept and had to do Cytoxan treatments which brought everything back under control. I have been on disability for the past 11 years. I had long term disability with the company I worked for and also get Social Securtiy disability.

For the past 10 years I have been doing pretty well. Just recently, my lupus nephritis has started acting up again. My doctor increased my Cellcept dosage and it seems to be helping.

Despite having lupus and not being able to work, I have had a wonderful life! Sure, there have been major road blocks and some detours, but overall life is good! Having a positive attitude is HUGE!!! As difficult as it may be sometimes, I always try to find something good out of a bad situation. It sure beats the alternative of being miserable and feeling sorry for yourself all the time! I cannot emphasize enough how important being positive is!!! People marvel at my ability to come out of every situation, no matter how terrible, with a smile on my face. It is something you really have to work on and practice. As they say, practice makes perfect!

There is definetly a learning curve involved with having lupus. The key thin is to educate yourself! The lupus Book by Daniel Wallace is what we consider our bible! Read it, learn it and read it again! There is another book I like called Lupus Q &A Everything you need to know by Robert Lahita and Robert Phillips. It is very easy to underrstand and is a great book to give your family and friends to help them understand lupus.

You will get to know your body very well! You have to learn you limits, what you can and cannot do when you need to rest and how to pace yourself.. You will also have to learn to be your own advocate when it comes to the medical profession. Doctors can be, and often times are wrong. When you think something is wrong and thre doctors disagree, My motto is "go with your gut it will never let you down." Be persistent and ask tons of questions!
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Being honest with people about having lupus has served me well. I explain to them what it is and how it affects me. So they know when I cancel plans it is because I am not feeling well, not because of anything they have done. You will find that most people are very understanding when it comes to this if you are honest with them about it.. I always plan FOR things, but don't plan ON them, that way I won't be so disappointed when I cant participate.

Getting a lupus diagnosis now versus when I got mine back in 1983 is very different. Back then, everything I read said lupus was a fatal disease! Talk about scary!!! Now it is all about LIVING with lupus, not dying from it!

If I may ask: how old are you? What are your symptoms? Which medications are you taking? How is your family taking the news? Do you have a good support system?

We are here for you when you need us! Anything you want to know just ask!

Hang in there!

Lupylisa

Hi sharonbp- I wanted to reply as well with another encouraging word... I suppose I too am a "newbie" since I was just diagnosed a year ago... my life has changed drastically since the diagnosis: feeling better on meds (plaquenil side effects should get better after a few months) I don't feel CRAZY when I feel terrible for no apparent reason! (always feeling like I was getting sick made me feel like I was sick in the head) and being more intentional about my health is something I should have been doing anyway. So if you wanted advice, this is the best I have - learn all you can but don't let it scare you. Put your health at the top of the list in all you do and you will likely be able to manage, Lupylisa44 is right - this board and website is a great resource of info. But it is easy to get overwhelmed by it! Treat yourself well and give yourself a break.

Hi Bumbleboo,

Thank you so much for your response. It really helped! I have been trying to learn a little about fibromyalgia and lupus, but not too much. I was reading a lot in the first few days after I was diagnosed, and you are right, it was VERY scary! You and I sound a lot alike. I have never really been very intentional about my health either. I was always taking care of everyone else...not me. May I ask how old you are? I am 48 years old. I have been suffering from a dibilitating vertigo problem for 20 years, and now fibro. and lupus. It's a lot to handle, but I will not let it beat me! I have a 12 year old daughter and a 14 year old son that are my life!! I will do whatever it takes to be here for them! I am married but in a horrible situation. He is controlling, and verbally and emotionally abusive. He has not been supportive at all with my health issues. I am trying to decide what is best for me and my kids...to stay or to leave. I would love to talk whenever you have time. Thank you again for your advice.

sharonbp

Hi Lupylisa,

I am 48 years old. My symptoms are extreme fatigue and pain. I have had a disabling vertigo problem for 20 years and was then diagnosed with fibromyalgia, and now Lupus. I am taking Plaquenil and an antiinflammatory for the Lupus. My family, with the exception of my husband, have been supportive. I have been married for 27, almost 28 years, and he is very controlling and verbally and emotionally abusive. I have been staying for the kids, but I don't know if I can take it anymore. He is not supportive at all. Quite the contrary. He goes out of his way to be mean. I would love to talk whenever you have the time. Thank you for being so open about your illnesses. It is nice to talk to someone who understands.

Hi, i am soo sorry about the way ur husband treats u,we had only dated for 9 m0nths when i got sick, i even told him he cld go and i'd never say i am so blessed with my husband{sometimes LOL!} but dealing with my disease he's been here all the way.We had only dated for 9 months when i becsme sick and i told him he cld go and i'd never say a bad word against him and he said he wasnt going any where. In Aug. we'll b celebrating our 3rd anniversary.I dnt know if ur a christian oe not but pray about him and his conduct toward u and leasrn to rebuke the devil thats using him to get to u and anoint his bed oillow his favorite chair anything he touches pray over it GOD will hear u and dnt stop til he changes but then pray for him to stay changed. I will b praying for u too bc u or no one deserves that kind of treatment,C i only have an aunt out of my immediate family. both my parents have passed away, both still young my father was 51 and had a heart attack he died in '98 now my mother just passed in '09 from breast cancer we found out july 26th and she died on Dec.6th same day as my fsather onlyb 11 yrs differnce, she told me while she was still vable to speak to keep the faith and u know she kept her faith with GOD until she went but he did hesl her with the ultimate healing, honey hang in and pray for him have every one u know prsy for him but dnt tell him and rebuke thst devil thstd causing him to act like that if u dnt know how and wish to know just let me know and i.ll tell u how,my prayers will b with u and if u r a child of GOD, GOD doesn't like it when people mess or hurt his children, best of luck and keep the fsith that GOD will change him, GOD bless u and my prayers and love goes out to u

It sucks that you are in such an awful position with your husband. Only you know what is best for you (but I think you already know) It is a very scary decision to have to make, but you have to do what is best for YOU and your kids.

My ex-husband wasn't abusive in the traditional sense. He was very selfish and did what he wanted and basically started to ignore me and my needs completely. I was very unhappy and not sure if I could survive on my own (financially) I finally made the decision to divorce him and I have to tell you that was the BEST DECISION EVER!!! it was like a s\20 ton boulder had been lifted off of my shoulders! Life is too short to be unhappy! Stress can have ill effects on your health (especially with lupus)

As it turned out, I was able not only to survive, but to thrive on my own! about 3 months after my divorce was final, I met the love of my life! I wasn't even trying to find someone new, in fact I was totally opposed to the idea of dating ANYONE at all for at least a year. Then,BAM! there he was! My point is that you never know what life has in store for you, and you probably won't find out, until and unless you make yourself available and open to new opportunities.

Whatever you decided, we are here to support you!

Lupylisa

Hi totallysoconfused,

Thank you for the advice. I really appreciate it. Yes, I am a christian and I have totally put it in his hands. Everything happens for a reason and I am just hanging on to find out what it is. I pray every day and will continue to do so. Thank you for your prayers as well. Take care.

sharonbp

Hi Luplisa,

Thank you again for your response. I really enjoy talking to you. You sound a lot like me. My husband is very selfish and ignores me as well. I do know that I need to leave, or I will never be happy, but I am so afraid no one will want me because of my health problems. I will keep praying about it. I know God will show me the answer...hopefully soon. It really helps talking to you. Thank you.