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Hi I'm new here but not new to fibro!

Feb 11, 2016 11:56 PM

I was diagnosed with fibro two years ago, but by estimation have been misdiagnosed for at least ten years. I also have sjogrens syndrome which caused my teeth to go bad at a very early age. Well I was taking so much ibuprofen for my teeth I was actually self medicating and didn't even realize it. I finally got my teeth all out two years ago (which prompted me to do a ANA test) my grandmother has lupus and I figured everyone else in my family has been tested I my as well! That's when we found sjogrens syndrome not lupus and fibro. Things have been upside down ever since. My pain has intensified and I started a new job last June to help me get moving and hopefully help me lose some weight and be somewhat normal again. My memory loss is tolerable some days but most days I feel like I'm in a dream not real life. I was making dinner one night getting ready to peel potatoes and for at least five minutes I completely forgot how to peel a potato. I mean who does that. The scariest is when i m driving and forget for a split second how to drive. I worry all the time that those split seconds will turn into more than that. I've taken the meds and hate how I feel on them. So I stopped. I want to go finish school but I'm afraid I'll forget most the stuff I'm trying to learn. That would be a total waste of an education. I'm also a single mom and the hardest thing for me is that it seems I need to choose between being home with them and working cause I can't do both. Sometimes I can but most of the time I'm useless when I get off work. So that leaves my poor boyfriend picking up the slack after he's worked all day and that's not fair to him. Also the comments at work are getting old my boss tells me all the time "I've been here 23 years and haven't missed as much work as you" when I bring them doctors notes and have tried to explain to them what I have and when they hired me I told them I was gonna have a lot of appointments. I'm at my wits end and I'm usually a very positive person. I'm not depressed no matter what my pcp keeps trying to tell me. I guess I'm at that point when I'm wondering when is enough enough? Do start fighting now for disability? How do I even start? Does the doctor do that? Should I just go straight to a lawyer? I'm only 34 years old how has my life come to this? Why can't anyone help? I'll settle for semi normal at this point. I guess that's it, me in a nut shell and probably a story y'all have heard a million times.

Feb 12, 2016 6:42 AM

Stefane, I think me and you are going to be good friends. I'm also new on here too but everyone is friendly and helpful. I was diagnosed with lupus in July of last year. I didn't get to see a Rheumatologist till January of this year. After all the test she diagnosed me with Sjögren's syndrome and fibromyalgia. She said I still tested positive for lupus but she didn't want to label me with it just yet. She prescribed me plaquenil which I just started because of no insurance it costed $120 for a month supply. And that was at my little town area drug store. The chains like Walmart and CVS were much higher. I found out thru looking for a patient assistance program that there was a shortage of plaquenil so therefore the rate went up. So no pharmaceutical company is giving any out for free. The only program I found was Rx outreach which will cost me $44 a month. I was taking out of work 2 years ago by my doctor when I lived in another city. I just thought my back needs some surgery but as time went on. I have had stomach issues, joint issues, depression and anxiety issues. Luckily I had to file for disability because my short term disability company recommended it. I have been turned down twice and my hearing is March 1st. I don't want to be on disability, I want to go back to teaching. I just wanted the Medicaid but here in NC you still have to be disabled to get it. So I'm praying March 1st everything goes ok. I'm telling you this because maybe you should just as a backup plan. Nobody wants to get on disability because it's not a lot to live off of. But I'm doing it because I have 9 specialists I need to see and I know I have at least 2 surgeries that I need to have. So I'm hoping to only be on it for 2 years max. And if I can't go back to teaching I have backup plans in place to supplement my income. So it doesn't hurt to fill. Also concerning your job, they are to make adjustments because of your illnesses. I'm have a brain fog right not but its in I think the workplace disability act. I know I have the name wrong but it close. So yes get an attorney and consult with them.

Feb 12, 2016 7:59 AM

Stephane I completely understand about the brain fog. I can't believe how lost I am most of a day. It's just ridiculous! I haven't tried to peel a potato yet, but I have stood in the middle of a room wondering, why & how I got there & what was I supposed to do next. It's so scary!

Feb 14, 2016 11:41 PM

Americans with disabilities act..it is for people like us who have to work..if you can mention this and hopefully you might get better help with your employer. You are a strong woman I am very impressed with how you are coping with all the life stressors. Keep Rocking it ..I am glad to get to know you! Love and Blessings, Terri..

Feb 15, 2016 1:13 PM

Welcome to our community family Stephane! I also have fibro & sjogrens, along with many other chronic pain conditions. I've been on Plaquenil since last May, and so far it's worked pretty good. The worst part of Sjogrens has to be the pinprick mouth blisters; they burn and hurt so bad leading into flares!

Painedlady, have you checked on the cost of a90 day rx through ExpressScripts? I have insurance and their 90 day is so much cheaper than the 30 day at my local pharmacy. ExpressScripts may have a discount program for uninsured.

Hugs, prayers, & blessings of good luck to all!

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