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Bellashine

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 #1 
So I been diagnosed about two weeks ago and it all makes sense why I have felt the way I have for awhile. Not sure how long i have had it but it's really scaring me. Don't want to tell my family or friends cause I don't want people worrying. Any advice how to deal with this would be great.
Robinj

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 #2 
Welcome Bellashine :)
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
taffylinden

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 #3 

Hi, Bellashine. I think the first thing you need to do is get as educated about lupus as possible. The LFA site has a lot of good information, so maybe start there.The more you know about lupus, the calmer you'll be. It's a little scary to have a chronic illness, but keep in mind that many people with lupus live normal lives. And nothing has changed except that now you have a name for what's been ailing you. Knowledge is power. 

I hated having to tell my family and friends about the lupus diagnosis, too, but I shouldn't have. People who know you know you've been suffering for awhile. It's good to have a name for what's been going on and to know what the treatment options are.  Also, the calmer YOU are about it, the calmer they'll be. 



SallySmiles

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 #4 
I completely agree with taffylinden, well said.

Some strategies that have come in handy for me - the word Lupus gives the shadow a solidity. You have struggled to identify the shadow that has been bothering you. I see mine as canine, the wolf. Everybody knows that you canʻt tame a wolf, but if it chooses to be with you there is a strong foundation for shared strength. As long as you remember that the wolf has a mind of itʻs own and will always be wild. It will never be a beagle. Sometimes it is best not to announce the wolf in the house and frequently he can astound with strength or knock you to the ground. Itʻs ok to lean on him from time to time.

Be as informed as you can be and know that your own variables will reflect only your wolf.
Living with uncertaint makes one uncomfortable and having some identity to the mystery is a good thing.

I am sixty two years old and got my first dx of Lupus at the age of sixteen - after years of RA and being a magnet for illness, while being reactive to strange things. You can have a good life! Befriend the wolf and listen when he tells you to rest or pay heed.

Twelve spoons theory helps a lot of people comprehend certain aspects, as well as quieting the internal argument regarding days when you really need at least service for sixteen.
ʻNormalʻ is a lousy word, your ʻnormalʻ and mine would most likely be different. Dump comparatives, other than to learn your own restrictions. You have strengths, too.

Tell those who need to know and let your life move forward. You do not have to wear a sign or explain yourself. Be yourself and carry the knowledge that getting this far is a major part of the journey.

I am sorry that you feel devastated, share that with your loved ones by all means. Sometimes they just need to know how you feel. I wish you all the best
mayte

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 #5 
I have also been diagnosed with Lupus a week ago!  I have read so much about this horrible disease... and I am so scared!!! My mind is going insane!  My doctor did not referred me to a specialist.  He told me to loose 30 pounds and to see if the pains go away so in 3 months i should go back to see him.  Should I schedule my own appointment with a Rheumatologist or wait three months?  My DNA (DS) antibody, c-reactive protein, cholesterol was high and I have had pain in my joints for a while now. My ankles are swollen.  I am so confused but very thankful to have found this place!  I appreciate any advise!  Thank you! 
Baker1

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 #6 
Mayte, just relax and stay away from Dr Google. There is a lot of poor information out. As for your cholesterol being high, that can happen to anyone. The swelling in your ankles could be you just retaining water. Since I am not a doctor, talk to yours about your concerns.
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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
judynurse

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 #7 
I was diagnosed about 3 months ago.  Now all those symptoms and my feeling so tired, feeling I was being "lazy" make sense.  I am a retired Nurse, have had patients with Lupus, so didn't quite freak out as much as many do.  However, I was not well-versed in Lupus, i.e. symptoms, treatments, etc.  Most of my Lupus patients had had the disease for many years and were elderly when I was their Nurse.  

Unlike most, I wasn't diagnosed until the month of my 75th birthday, but looking back, I've probably had it for quite a few years, as the fatigue, occasional rashes, joint and muscle pains have been ongoing for a long time.  It wasn't until the facial and back rashes came fast and furious that I figured out what I had.  Actually diagnosed myself, originally!  Went to my Family Practice doctor, told him what I thought and asked for diagnostic tests.  Most were negative, but a couple showed up right away. Firswas severely low in Vitamin D, so was immediately put on 50,000 IU of Vit. D weekly.  (Also have had problems with sunlight for years.) Next the confirming test:  ANA was positive for Lupus.  Immediately located a Rheumatologist (had to go to next state to even get an appointment this year!!) and won't see her until May.  I also looked up everything I could find out about Lupus on the Internet, called the Lupus Foundation in St. Louis, Mo., nearest one to me, got more information, and began to try to manage my Lupus.  When symptoms got really bad, called my MD, asked about at least low-dose steroid treatments, and he put me on Prednisone, only 5 mg., but it helps some.  Started eating even though I did not want to, since I had lost over 10 lbs within a month and already had gone underweight.  Have now gained 5 lbs., but still very fatigued, achy, and have one rash still ongoing on back, which isn't responding to treatments tried yet.  Any suggestions regarding rash?    I also have to have breast reconstruction at end of this month due to damage to breasts, chest muscles in a car accident last year.  Surgeon aware of Lupus, and informed of complications, has done this on Lupus patients previously, which relieves my mind!  Any ideas for the lack of being able to sleep more than 5 hrs or so, or the rashes?  (Have been through 5 ointments, creams so far!!)
Smith&Lesson

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 #8 
Just wanting to say Hello to all the newbies on this post --Hello! :D  I am so glad that you found your way to this message board and look forward to getting to know you all through your posts.  Your thoughts and personal journeys can help others grasp what living with lupus is like, and venting here helps us too.

Sending Happy thoughts and lotsa' Love to you All today! >----------(' ')----------<


Edit:  P.S.  Judynurse, I also had some follow up questions regarding your situation but did not want to highjack Bellashine's post with these (ie. are they planning on using strattice in your reconstruction?).  Maybe start a new topic/thread so people can respond to any specific concerns that you have ;)
Robinj

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 #9 
S&L
I wouldn't consider it a hijack. Bellashine posted once 2 weeks ago and never responded to anyone. No worries...

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Smith&Lesson

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 #10 
Good point Robin --Thanks for pointing that out!
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