Hello. I am a 40 year old lupus patient who stumbled upon your group on accident. I am, however, grateful I did so, because it looks to be a very valuable resource. From what I remember, my diagnosis was a difficult but welcome one. I was in so much pain, every joint screamed out in agonizing pain, and my entire body swelled to twice its normal size, from all the inflammation. I was extremely fatigued. I had been to the ER several times over the previous two to three years for unexplained pain and swelling and each time they would send me home, saying, “take ibuprofen”. They started calling me a “frequent flyer”. I got used to it and just got discouraged and stopped going, knowing they would do nothing but make me wait up to 8 hours in those hard, cold chairs, just to take blood, do xrays and nothing else about whatever was wrong, just to have my family reaffirm that I was a hypochondriac because I again, “frequented the ER”
So finally, the straw that broke the camel’s back: about 5 years ago: the pain reached a 10 at the minimum. I was crying, couldn’t move in any direction, any part of my body. My skin even hurt. The pressure of clothing on my body even hurt. Everything. And my entire body was so swelled. My caseworker came over and found me slumped over the table, unable to move, crying. She picked up my arm and it just fell back down. She said she was calling an ambulance and she was getting to the bottom of it. I was taken to the ER where they bypassed triage and started working on me immediately. A nurse came in after things calmed down and I was stabilized and asked me if I had ever heard of lupus. I was too weak to respond so she kept talking. She basically told me they had ANA results proving they suspected lupus all along when I first started coming in with unexplained pain but did nothing about it. She promised I was not going home without answers. I was livid, I wanted to scream, " why didn’t they do something about it then???" but I was too weak. The medicine was taking affect and I was grateful to finally be getting some pain relief but so very scared and full of questions.
I was in the hospital for 4 months…it only took 1 month to rule out every other illness (there was extensive testing, CT scans almost daily, MRI’s, spinal taps, bone marrow aspirations, biopsies, etc) but there were complications after the lupus dx. I developed Steven Johnson syndrome from taking an antibiotic and nearly died from that and that’s why the other 3 months. I had blisters and scarring rashes on all of my skin and mucous membranes all the way down to my stomach. But I lived through it and the scars are minimal. As I healed from the sjs my skin had to completely peel and the underneath skin had to become the top layer. I couldn’t eat drink or talk for quite some time. The skin on my lips was constantly crusted blood. I went to a rehab facility and stayed in a burn unit for 3 months after leaving the hospital.
I’ve been in the hospital for several various things since then but I’ve learned to be quite tough. I had a broken foot last 2 1/2 years because the prednisone gave me premature osteoporosis, as well as many other illnesses that have become chronic from sle complications, from needing a thoracotamy and being on life support for 3 weeks, to pulmonary embolism and dvt’s, and repeated pancreatitis.
There have been many other small battles. But I WON them all. I think the one thing that bothers me about all this is that my family acts the way they do sometimes…
but one thing is for sure…I will ALWAYS persevere! Nothing holds me back. I’m way too stubborn!! God is going to keep me going until He wants me back…