Dara's Story

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Dara's Story

Hello my name is Dara Roberts - I am a 31 year old married mother of 3 beautiful daughters from Spencer, Iowa. I was initially diagnosed with Lupus on November 17th, 2005 then I got a 2nd opinion on June 12th, 2007 - same result - it's S.L.E.

Reading some of these stories on here - maybe I don't have it so bad. Although, I really miss the person I used to be. My lupus started in the spring of 05 so I was diagnosed rather quickly - I went to my family physical for the debilitating joint pain and he noticed the malar rash on my face - I was a chronic fake tanner and thought that it was from that - I had tanned the day before. I always seemed to get really red across my nose and cheeks after I tanned. He sent me to a rheumatologist and the diagnosis was either Lupus or Mixed Connective Tissue Disease - came down to him kind of shrugging his shoulders and saying - Ahhh we'll just call it Lupus - reassuring - I went on prednisone and plaquenil - soon after I wasn't doing any better and went on methotrexate also - it controlled the joint pain - which was my only symptom at the time - I was feeling OK - I'd of course have bad days, but all in all I was good. In the spring of 06 I went to the dr. for ear infection (of which I've had a ton of, not sure if it's Lupus related or not, but I get them all the time). Randomly got my blood pressure and pulse taken - my blood pressure was VERY HIGH like 190/106 and my pulse was around 130 bpm. I was given a shot of something immediately and had to stay in the drs. office for like 4 hours - no biggie - then I was put on nifedical and folic acid for the high blood pressure. So, from that point on I'd have flares - small ones with joint pain, fevers, swelling of the joints, random rashes, when I say joint pain, I mean can't MOVE joint pain - can't walk up the stairs at night, have to sleep on the couch - and by sleep I mean lay there in pain - but it was manageable and survivable and usually the next day was better than the last.

This last fall things have started to change for me. For a couple days I was having a really strange sensation in my throat - like behind my wind pipe hurt to breathe and felt really pressured and I felt like both of my ears were infected and my head was going to explode - it was really hard to breathe because of the pressure in my neck and head - a co worker of mine took me to the dr.'s office - he called it pleurisy - still not exactly sure what that is. Put me on some pain meds and an inhaler and sent me home - I recovered with rest.

Then a month or so ago, I went out with some girlfriends for a birthday party - all of the sudden I had to use the inhaler - we were at a bar so maybe it was the smoke?? We went home shortly after (oh I forgot to mention 3 days prior to this my left shoulder - more on my back to the right of my shoulder blade right there in the muscle hurt SO bad - like I couldn't lay down flat at all - not on my back or either side - I had been sleeping in the recliner for days) - so I get home from this party and I get ready to go to "bed in the recliner and I had taken a muscle relaxer because they KNOCK ME OUT - I'm not fond of them because the next day I always feel groggy and don't have any energy to do anything, but my shoulder was hurting really bad so I took the relaxer and two hydrocodone that I was given when I was in the dr. for the pleurisy - around 3:00 AM I woke up to not being able to hardly breathe AT ALL. I had to try to yell for my husband who was sleeping upstairs, but yelling when you can't breathe is virtually impossible, I was praying the dog would wake up and jump off of the bed and wake him up - miraculously after the 3rd or 4th time I faintly yelled his name he heard me. I could only take VERY short breaths - It was the same feeling as before but different the pain was now in the middle of my back and around my sides and it's not a "can't breathe" like your lungs can't capacitate the air, it's a "can't breathe" like your body physically won't let you breathe in any deeper because the pain is so excruciating it's impossible. I went to the ER and I was admitted into the hospital after chest xray's (clean) CT Scans (clean) NUMEROUS blood tests (only thing they found was a high white count). They did know that I had Lupus and they were VERY nice, even though everything they were testing was coming back normal. Around Saturday afternoon I was feeling a bit better, I could lean back at least on my back now and could take a bit deeper breaths and this was after 3 HUGE syringes of morphine - well then I start to throw up - I'm apparently allergic to morphine - they switched me to demoral and it was up hill from there. I had to stay Sat and Sun night and got out on Monday and have been feeling much better since - my rheumatologist thinks it was a swelling of the lining of my heart and lungs - I was put on a high dose of anti-inflammatory Indomyecin or something like that and it seemed to work. And here I am today - waiting for the next flare - waiting for the next hurdle. I'm going off of methotrexate and starting on Azathioprine on Monday - no idea what my future holds but I'm going to fight it - I have 3 beautiful daughters who need their mom! That's my story.

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