Angie’s Lupus Survivor Story

lupus survivors imageMy name is Angie and in the 90’s I was diagnosed with Lupus. It was actually very fast. I went to my Primary Care Physician three months in a row with the flu and flu like symptoms. He decided to run some tests and on my follow up appointment he sat me down and said, ” all your lab work is great, excellent but you tested positive for Lupus we also did an EEG let’s get it and look at it.” When he came back he told me everything on the EEG looked great except my theta waves are hitting while I’m awake. I just looked at him for about a minute let it absorb then told him I’m really glad he didn’t do a pelvic exam because everything else is broken. We both laughed and it took the tension out of the room which was a relief. Then he explained what Lupus was and how it would change my life and I started slowing falling down the rabbit hole. When I finally hit bottom I was confused, scared and felt so relieved to know I was [not] actually crazy there was actually something wrong with me. So my PCP (Primary Care Physician) set me up with a rheumatologist. Mistake. You know what I mean if you have ever been to one before. We are the red-headed stepchildren of rheumatology. Especially back then. When I went to the appointment it felt like everything was spinning out of control. The doctor came in asked a few questions but didn’t give me time to answer and didn’t allow me to ask any questions and I had a lot. Then he handed me a script and left. No instructions. No information on side effects. I had no idea what to expect. So I started falling further down the rabbit hole. More like spiraling. Like a good patient, I got the scripts filled. Methotrexate, Plaquenil, and quinacrine. I had no idea what I was getting into. I started taking the medication and here came the rabbit, “Read the directions and directly you will be directed in the right direction.” All I was thinking was It would be so nice if something would make sense for a change. I didn’t need to read the side effects because I had everyone. The medication was worse than the Lupus.

I was working night shift and I always took the methotrexate before I went to bed on Thursday. I had already gone to sleep when the vomiting woke me up. It was so severe I was urinating on myself. I didn’t realize my daughter who was six had stayed home from school because she was sick. She walked into my bedroom and just stood there. In shock. She finally started crying asking mommy what’s wrong with you. At that moment I decided the medication wasn’t worth it. I choose quality over quantity when it came to my life with my children and would make the same the decision again. So I pulled myself out of that rabbit hole and back into the real world. Not realizing what it was doing to my body. Back then most people had never heard of Lupus nor how dangerous and deadly it can be. So I went about my life trying to forget about that rabbit hole. I would have the joint pain and headaches but push through it. The fatigue made daily life extremely difficult but what choice did I have. I had three beautiful babies that depended on me. I went back to my PCP and he wasn’t happy but he gave me a little advice I’ve carried with me. Prednisone, which may make you feel normal again will take years off your life. Stay away from it when you can. I will follow that advice the rest of my life. I am actually one of the lucky ones. Most people go years without knowing what is wrong and by then the damage is done. I at least had a choice. So this is the beginning of my story and how I have learned to live with Lupus.

I am now trying Benlysta. Having some pretty severe side effects today. But I have faith. It will work. It has to work I have severe CNS Lupus with Dementia, meningitis, encephalitis, and cerebritis. So it has to work.

3 thoughts on “Angie’s Lupus Survivor Story”

  1. Hi Angie my name is Mary I was diagnosed with SLE Sjögren’s and now MS have been on Celebrex, Plaquenil and Prednisone for my SLE plus cortisone shots on my shoulders and knees. I was barely diagnosed in 2014. Wabt to be on less meds so the side affects don’t speed up my illnesses. For my Sjögren’s I take eye drops Restasis. For my MS I take 6 Levetiracetam 500 mg the Neurologist put me on antidepressants as well have never felt worse so stop taking them. He said he didn’t put me on them for depression but to help me sleep since as you know it’s hard to get any sleep with LUPUS. Can you give me ant advice on how to live a healthier life style? The first thing I read when I was diagnosed was having a life span of 10-15 years if I had good medical treatment? My Rheumatologist is great he has helped a lot but my Nueorologist I’m afraid isn’t that great this is the second one I see. O want to be able to put my illnesses in remission so any advice would be appreciated.
    Thanks and God Bless,

  2. I was diagnosed with lupus when I was 15. I am now 50. I have been on prednisone (and many other drugs) for 35 years, and there have been many hurdles along the way. It seems that I will have to have dialysis very soon, but I am happy to have made it this far without it. I have had a great life, and have two wonderful children. It wasn’t easy to get them, but they were worth it. I am used to living with pain, and I do the best that I can with what I have on the day. Live your lives the best you can. Put a smile on your face whenever you can. You only live once. Enjoy as much as you can. 🙂

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