Back to Square one

my primary said I am not getting better nothing is working and he is at a lost for treatment that you need to return to Mayo. So here we are day one and they are repeating many tests seeing everyone again and adding new docs. Very overwhelming and dis-heartening… They did an EKG again today and there was a change and not a good one. so that’s got me a little worried, and wondering what else has changed. I just want answers an idea any sort of plan. It’s been 2yrs of the unknown and this and and that. Ready to get a handle on it all! Life with lupus such an unknown… My health has gone down hill that I even had to drop out of school. That was a really hard thing to do… Seeing that dream being taken from you from a disease…

::sends comforting hugs to Louters:: I'm so sorry hon. I fervently wish, for all our sakes, that Lupus was much more defined and straight-forward. It can be maddening how erratic, unpredictable, and incomprehensible it is! I'm terribly sorry to hear that you had to give up college, I know how important that was to you. I also wish I could say or do something more to comfort and support you. All I can offer is a ready ear, an understanding shoulder, and all the love I can muster. Hang in there hon. You aren't alone! If I could be, I'd be right there beside you. ::more hugs::

Sad to hear it! I’m sorry, hang in there!

I am really sorry you having hard time.stay strong .

Thinking of you. I understand what it feels like to have to give up study ( not easy). Let us know hop you get on. Kaz x

I can relate. I am sorry for your suffering. This has been my worst year in 15. The pain is worse then ever and now on top of Lupus and fibromyalsia I have psoriatic arthritis. It's awful. My hands and feet swell so bad. I can barely walk. Nothing seems to help. I want my life back.

I am so sorry you are having so much difficulty at this time Louters and my thoughts and prayers are with you. You seem to be a fighter so keep on fighting young lady you will push through this season in your life. It seems this disease is one of constant adjustment for us and I know you will make the adjustments you need to and keep going.

I am so sorry--hang in there. I will pray that you feel better soon. I know how difficult it must be --giving up your education--this is temporary--things will definitely get better--hang in there.

Take care,


Thanks everyone! I’m home for awhile before heading back for another week of tests and dr. Visits. They redid the pulmonary test and the doc. Said if it was worse they would send me to see pulmonology sure enough I have see them… So I’m anxious to see and get all results back.

I hope things get better for you.

I wish the best for you. I know it is so hard to get a straight answer and you really need one.

Hopefully there will be an answer this time. Remember that you are not alone and we are all

pulling for you!

Big Hugs,