Emotional & frustration

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New Member

Date Joined Aug 2014
Total Posts : 1
   Posted 8/10/2014 3:14 PM (GMT -6)   
I have not been fully diagnosed with lupus as my doctors says my blood work shows lupus but my skin looks like I have scleroderma. I was so sick & in pain last October I had to stop working, give up my apartment & move in with my aunt. This frustrates me. I am however diagnosed with raynoids disease, which makes it difficult to function during winter & occasional painful lesions. I was put on prednisone 40mg for 7 months.The pain was gone, but I lost my hair, eye sight got blurry, huge moon face, always bloated, weak & unbalanced & gained 30lbs. I am 29 yrs old never been sick other a little cold & has no other issuesother than this. I try my hardest to be happy & cheerful, but its hard. I cnt help but to just cry. Im always tired. . Always sleepy. I think my aunt thinks im not being truthful sometimes because most days I do not "look sick" she assumes im telling lies. Nobody I know has this, so no one cnt relate. I want so badly to gain bk my independence. I am grateful that I am still among the living, but this is the hardest thing I have ever had to deal with, I wouldn't wish this on my worst enemy. I am now dwn to 5mg prednisone & now on methotrexate 2.5mg where I take 6 once per week. I hope all goes well with this medication.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 8/10/2014 4:19 PM (GMT -6)   
(((((((Gentle hugs)))))))))

I'm sorry you're having to deal with this. It does get frustrating having to deal with our crazy bodies, let alone trying to convince other that you are sick. I've given up trying to convince others how bad I feel. They are never going to fully understand how sick you're really are unless they have it too.

I miss my independence too. I have to live with my mom and dad. My mom can't understand why I don't keep my bedroom tidier..I tell her I forget, I'm too tired, or I'm hurting that day. She gives me her, "oh, yeah?" look.

I see a therapist who deals with chronic illness patients. She helps me when I'm down or frustrated. I also joined a support group who help out a lot and of course come here.

The tunnel may see dark and never ending but there is people who can hold your hand through it.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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