new and nowhere to turn

 

 

Hi, I hope that I have come to the right place, I am sort of lost. I have been sick, diagnosed and misdiagnosed for over 20 years. Divorced twice and verging on a third, because nobody understands how I am feeling. I am so frustrated!! My final diagnosis is SLE, Sjrogrens, Fibromyalgia with severe depression and anxiety disorder. My Rheumy started me on Ibuprophan 800mg 3x/day, placquenil 400mg, xanax .5mg 4x/day, effexor 300mg, adderall xr 30 mg, prilosec, zyrtec d, singular, ventolin inhaler prn, nasonex, numoisyn, amoxicillin and doxycycline for constant infections, and currently tobramycin drops for an ulcer on my lower eyelid. Wow! I have all the regular sypmtoms that i hear of, ie, severe joint pain, muscle weakness, deep depression and anxiety, sores in my mouth, nose, eyes, my eyelashes are falling out (does anybody else have this?), profuse sweating, exhaustion, weight gain!!!( when I am depressed I eat), dry mouth to a point I can't even talk, cold hands and feet, chest pains. After all of these symptoms, my husband still thinks I am crazy, because I look ok and have good days and bad. When I tell him I am not feeling well, he just rolls his eyes. I am going to a phychyatrist and a counsler for therapy and learning to cope, but my family will not join me. I really need support! we have a family business that I usually run, manage basically everything, but cannot work now. I have applied for assistance and have been turned down, so I am back to running the business on a good day, then having 3-5 bad days. Does anyone have any suggestions? I am new at this, and it seems that anytime I get a new symptom, I panic and go to the doctor because I don't want it to effect my organs, so I am being casious, and it is becoming very expensive and adding to my relationship problems. Any advice? I know this alot to ask at once, but as I said I am desperate for support and answers, or at least someone to talk to. Thanks for listening and my prayers are with all of you.  Thanks again, Dumplin 

(((((( Dumplin ))))))))) The hubbies have a really hard time with this initially. They can't fix it . . . therefore it does not exist. It is inconvenient and they cannot see it . . . therefore it does not exist. If you had a broken arm, you'd have a cast on and all the world could see your illness. This Lupus illness is so invisible. *sigh* You've found a great place with really understanding members. We really support each other. Many of us are really blessed to have family who are supportive. I'm sorry your hubby isn't in that place yet. He really might eventually "get it" . . . but it will take some time. Bill gave you a great link. The Spoon Theory has helped many family members get a little idea of how we feel. There is some good info in "Lupus Resources" (link at the end of my signature). Lots of suggestions for new members from everyone here. Glad you found us!!! Some hot tea for you sis!! Blessings!

Welcome Dumplin. I don't have a lot to add tothe great info that Bill, Rosie and redrose gave you. I'm so sorry you were sick for so long without getting an accurate diagnosis. This darn disease is so hard on us and everyone around us. You have come to a great place for support and understanding. Take care and I'm glad you joined us.

Thank you all for your support! Dumplin

Hi again new friends,

Thank you for your responses. Does anybody have any eye issues like losing eyelashes or ulsers under the lid? Should I be going to a specialist for this or wait until I see my rheumy?

 I have only seen my new rheumy once when he tested me for lupus. The office called me saying all tests were positive and called me in a rx for placquenil 400mg. I have only been on it for 2 months, no improvements yet. I can only see my rheumy every 3 to 6 months, is this enough? He does not take my insurance, so I am a self pay. He is also the only one in town that I trust. Any answers?    thanks, Dumplin

Thanks Carol,
I actually have had skin cancer on my chest 6 years ago, before I was diagnosed with lupus. Survived that, thank god. I did not know that you can get rashes biopsied, will that show malar rashes or lupus? I am so green about this, sorry. I have applied for disability once and was turned down, I submitted a reconsideration with an organization called allsup, that specializes in disabilities. Have you heard of this group? They were on a web site recommended by some other medical organizations. It has been almost 2 years since the initial submission, hopefully I will find out something soon. My doctors are holding it up by taking their good old time submitting reports. I will keep trying, I know this would help my situation. Any other recommendations would be great1 thank you so much. God bless you, Karen (dumplin)

Definitely go to an opthamologist for your eye problems.