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Sugar Bush
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 5/9/2012 8:33 PM (GMT -6)   
I don't know what took me so long to join a forum. I am new to this forum thing, but not to Lupus. I was diagnosed with Lupus back in 2003, although I believe I was having flare ups back in 1998. It took forever for it to get diagnosed..because I was never having the same symptoms. I am figuring it went into remission shortly after I graduated college in 1998. In 2002 started a new job, everything was fine. In 2003, I started feeling bad again. Finally, I spoke to a Nurse Practioner..she listened as I explained my symptoms. I was having unexplained chest pain, dizziness..or more like my equilibrium was off. Numbness in hands and feet, swelling joints, terrible headaches. Just a long list of things!! She then noticed the butterfly rash across the bridge of my nose. Right at that moment she suggested I have an ANA test done. When my results came back the following day...my Sed Rate was extremely elevated. And that's when I was finally diagnosed. Then 2005, I had a kidney biopsy done..I was expelling too much protein through my urine. I then found out I have Lupus nephritis...where the lupus has affected the kidneys. So, now I am on Cellcept, plaqinil, and currently taking 50 mg of prednisone for a flare up I am experiencing now. I am extremely fatigue, moody and terribly sore. So sore at time, it hurts to touch certain areas that inflammed!! I am mentally and physically drained. I feel like my patience is low and I don't feel like doing much of anything anymore. No motivation. Just too tired!!! So, here I am.. thought joining this forum would be good for me. I feel like I can't talk to my friends...because they really can't relate and besides...I don't want to bring them down with illness. They already feel bad when they know I am not feeling well. My job just recently suggested I apply for short term disability. My recent flare ups have left me not able to walk at all some days.. Not able to get out of bed. It affects my hands, wrist, ankles and feet..amongst other things. I have gone to the hospital for pleurisy and wow is that painful!!!! I can say...out of all these years of suffering with Lupus...I was finally blessed to have children. I have two beautiful boys!!! They are 2 and 3 years old!! Unfortunately, the last pregnancy took a real toll on my kidneys and my nephrologist suggest I shouldn't have any more children. I joined this forum to help release some emotions, fears and thoughts I have been having for years...with people that can relate. I hope this helps me, so I won't build up so much frustration and animosity towards myself.. or others for that matter. Good night and thanks for allowing me to share.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 5/10/2012 6:38 AM (GMT -6)   

Welcome to our forum Sugar Bush. This is the perfect place to vent ‘cause there is always someone to listen and although few will have all your symptoms, combined you’ll find many who share your symptoms.

 I’m so sorry to hear of your nephritis. I’ve had problems with lupus attacking my brain (beyond the brain fog most of us have) but lately most of my problems are lung related. Yeah, pleurisy is a #*%! I’ve also had dizziness, numbness, touch sensitivity, and lots of joint pain. I was on Cellcept for 2 years, but I had to stop it for surgery last January and my rheumy suggested I stay off it for a while if I can.

I was also bed ridden for a while and had to take time off without pay using the Family Medical Leave Act. You might consider this if you can go without pay.

You really have lots going on raising your boys, working, and flares. One last thought, a few years ago a woman on our forum gave me this bit of advice:  Consider your flares as crossing a bridge. Sometimes the bridges are short and you reach the other side somewhat easily, but some bridges are so long you can’t even see the end of the bridge. Regardless, you will cross it. Just be sure to keep in mind that the end of the bridge is there. I’ve crossed many bridges. I still get mega bouts of frustration and depression, but I’ve always crossed each bridge eventually, and you will too. I hope, and you will too. I hope you find our forum helpful. Love, Butterflake aka Donna


Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 5/10/2012 6:49 AM (GMT -6)   
Welcome, Sugar Bush!

I agree with Donna that this is a perfect place to vent and to get others' perspectives. I, too, find it hard to talk to friends about my medical issues. A forum like this provides a supportive space filled with people who get it. Like Donna said, we all have different symptoms, but we can all understand what it's like to live with chronic illness.

One thing I have found useful is I see a chronic illness/chronic pain counselor twice a month. Forums are wonderful, but she provides me a face-to-face space to discuss my struggles. Like, for me, a big issue is dating. I'm in my early thirties and single and feeling pretty hopeless that no one will ever want to date a sick woman. So, she helps me process those feelings and come up with productive ideas on how to fix what's bothering me. She even takes my insurance! You might ask your rheumatologist if he knows any counselors who are familiar with chronic illness. I think someone with experience is absolutely key in our situation-- there are plenty of counselors out there, but one who is very experienced with chronic illness is important, I think.

So, welcome! And I do hope you feel better soon!

Sugar Bush
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 5/10/2012 12:05 PM (GMT -6)   
Thank you Elbee and Donna!!! I appreciate your kind hospitality and kind words!!! Donna, I'll remember what you said about crossing the bridge!! Well put!!! Elbee...I actually have thought about seeing a counselor. It never crossed my mind to look into a chronic illness doctor...thanks for that key point!! I will be checking with my insurance to see if they cover that type of service and if they could recommend someone. Donna...unfortunately, my job doesn't offer short or long term disability. I'll have to purchase that myself...I am praying that i won't have to go that route. I'll do it if the doctor strongly suggests it...but it's my job that's pushing me to look into it. And Elbee...trust me...the whole relationship thing and having an illness was a little rough on me too. Then...out of no where....I met him. If he loves you...he'll love you with all your flaws!!! My husband is great!!! I have been a little hard to deal with..with the high doses of prednisone...emotional, moody..etc. He still hangs in there!! I thank GOD for him!!! I am so appreciative!! Your knight will come...just be patient!! I didn't meet my husband until I was 32 yrs old...just got married this past February!!!! He is the father of our 2 boys!!! A blessing..I tell you !!! :-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/10/2012 1:30 PM (GMT -6)   
If you can afford it get both types of disability.
They are a blessing in disguise.
Joy

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 5/10/2012 7:38 PM (GMT -6)   
Hang in there SugarBush. This is an amazing place to share feelings, symptoms, ask questions and vent if you have to. I love it here!!

Laura (Oreo)
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