What a rollercoaster

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New Member

Date Joined Feb 2010
Total Posts : 12
   Posted 4/29/2010 10:15 AM (GMT -6)   
eyes  Am I the only one dealing with this?  I stopped working 2 years ago due to my health. Since then I have good days where I actually feel like I could work again, Ha!  So I apply for a pt job and am hopeful. By the time they call me for an interview I am too sick again.  I have since applied for disability only to be turned down. I have applied for disability reconsideration and have to wait another 4 months just to get an answer. I start to feel a little better so I take a once a week volunteer thing at a local hospital, I start to get hopeful again........  And I manage to go a few times all the while feeling good about myself and then BANG to sick again, the pain and fatigue are horrible. I try not to give into this disease, and the rollercoaster is too difficult. Any ideas guys? eyes
Diagnosed 2008 UCTD (lupus), Raynauds, Bursitis, Fibromyalgia and Asthma,  taking arthrotec, plaquinel, tramadol, adalat, symbicort and valcyclovir

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 4/29/2010 1:25 PM (GMT -6)   
Hey Sweet Lady,
I can somewhat relate to your dilemma.  I was diagnosed last year in March of sle.  Up until the August before I was a healthy 49 year old that was always on the go and never afraid to take on new projects, help out my neighbors, have weekly gatherings at my house and holidays and now I've had to pretty much give up many of the things that brought me so much joy. I was PTSO President for years at my kids school and had to resign after last year and pretty much don't volunteer to do anything for them anymore cuz of how I feel.   I use to walk my dog about every morning and now it's about once a month because everytime I try to get back out there, even in little spurts, it always comes back on me.   Everytime I start to feel good, something else seems to crop up unexpectedly, and that, of course, is how this disease is.  If you want to take a vacation, you're afraid to plan anything to far out, because you are not sure if by then you will be in a flare.  It really sucks, cuz you will get that phone call inviting you to go some where or be a part of something fun, and you are afraid to commit.  All I know is that I take it a day at a time and hope for the best, and make sure I get plenty of rest because that seems to be a big factor on how I feel from day to day.  We all have different levels of pain and various parts of our bodies that are affected by the disease, but one thing is for sure, we all have to be supportive to each other and take it one day at a time.  I always try to think that somewhere out there somebody has it worse than me and pitying myself doesn't help anything.  Hope you find what works for you and hang in there, after all, that's all we can do!!
Hugs and Angels
DX- sle and carpal tunnel
RX- plaquenil, prednisone, lisiniprol, etolodac, hormones, darvocet when needed and multivitamins

Forum Moderator

Date Joined Jun 2006
Total Posts : 1531
   Posted 4/30/2010 7:51 AM (GMT -6)   
Hi SweetJane. First let me say that pity parties are welcomed here. We all have them (and need them) sometimes and here on the forum one person may start and 1 or 2 more join the party!
I also think many of us have times when we think we could do some work, volunteer, etc but even the thought causes the flares slam ya back down.
As for disability, I'm an oddity. I was awarded 5 months after I applied. My advice: even though I felt like dog poo I personnally obtain my medical records from all my doctors. I completely filled out the soc sec disability application on line and made copies of all the info they requested. Once I submitted my on line app, I went to the soc sec office before they even asked. My walker was piled with all the copies and info they needed and I handed it all over to my case worker. (She was impressed!)  I used to be a federal employee. I think that the more you can do for your case worker, the harder they will work for you.  I hope this helps SweetJane. Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 

New Member

Date Joined Feb 2010
Total Posts : 12
   Posted 4/30/2010 11:26 AM (GMT -6)   
Thanks for the replies guys, really appreciate how others feel about these things. Leanne
Diagnosed 2008 UCTD (lupus), Raynauds, Bursitis, Fibromyalgia and Asthma,  taking arthrotec, plaquinel, tramadol, adalat, symbicort and valcyclovir

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