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Life With Lupus

Lupus patient 5 years, new to group


#1

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…


#2

Hello
It is unfortunate that this happend to you. I am glad they found out what was wrong. It is hard for family to understand what we go thru. Sometimes it helps if they go to Dr. appointment s with us.


#3

Praise the Lord that you were adamant and had a nurse who cared enough to help you find the answers to what was wrong with you. We know our bodies better than anyone; and we know when something just isn’t right! So, we must be aggressive with our doctors, or keep looking for a doctor that will listen to us and are willing to help find out what is causing our issues we are having…stay strong! Keep fighting the fight and praying to our Saviour Jesus Christ because with him “ALL THINGS ARE POSSIBLE”! God Bless You!


#4

Thank you for understanding about my family, purplebutterfly. They seemed really sympathetic, patient and like they wanted to help and be concerned, almost overly supportive and smothering in the beginning of the diagnosis. Didn’t miss a single Dr appt. or the chance to hear about one. Now days my caseworker has to take me to the Dr…And if I mention something that happens now days it’s like, “really? Why don’t you go get me some tea?” or, “that’s great, sis, I’m going to get my truck loaded,” or “darn that sucks, I sure hope I get overtime this weekend”…and the ones I call the adult kids (90’s kids) in the family…don’t care at all. They act like I’m trying to get attention and being lazy because some days I don’t look sick and I can function and they don’t understand why on other days I hurt so horribly I cannot move and I get so tired I can’t function at all. They simply do not want to help with anything not absolutely required, right down to rides to the hospital, unless death is imminent. I needed to go to the ER one night, and the adult kids got together and figured I didn’t really need to go without having the facts…I had to suffer until I could get a caseworker to take me to a rheumatologist the next day. I feel so trapped, misunderstood, and like they feel like I’m lying. One of my brothers actually told me he did not believe I get as cold as I say I do in the air conditioning in the summer because I wear a sweatshirt and coat in the hospital. But yet I’m so anemic I get transfusions…my family thinks I’m just such a liar…they will find out on judgement day.


#5

paula_weidner, yes I try to be a strong and very resilient person, God gives me that ability, and it is what gets me through. We are indeed the only ones that truly know what goes on inside our bodies. We are our own best advocates! Although we all need a hand at times…I agree with you that all things are possible with the help of the Almighty. It is also true that everything happens for a reason. Everything. And for believers, it all works together for our good somehow in the end, even if it doesn’t make sense at the time. Like what I just told purplebutterfly I was going through with my family. I believe I’m going through that for a reason. Maybe I’m learning patience from it, or another life skill. Maybe watching me go through it is teaching someone else a life skill. I don’t know. But God Almighty is not a vengeful God and does not promote suffering for no purpose. And He wants what is best for us. I will come through this a better person for it somehow. So will you. Thank you for your encouragement and your support and encouraging words. They mean so much!!