Topic of the discussion
Posted on 8/1/18 6:26 AM
Hello Carenity members,
in this discussion I would like to invite you all to share your experience with lupus:
when were you diagnosed with lupus? What has changed since your diagnosis.... medications, mental / emotional state, physical state, etc.?
Have you learned to cope with this condition? If so, how? If not, why not?
Thank you all for participating and I look forward to your responses.
Don't forget that we are here to share and to support, as well as to give advice.
Beginning of the discussion - 8/2/18Date of lupus diagnosis and any changes? https://www.carenity.us/forum/lupus/living-with-lupus/date-of-lupus-diagnosis-and-any-changes-331
Posted on 8/2/18 4:11 PM
I was diagnosed roughly June of 1997 with lupus sle. It has hospitalialized me for about five times with flares. Recently it put me in the hospital for 2 months, this is my 9th day out.
I have had to except losing my beautiful long hair. Not being able to go in the sun with out protection, which is hard considering I'm a sun baby.
I went through a stage where I lost my faith. Went through a mental break down four years ago. Became very unhappy and condisending, hated life which is the opposite of my personality, I tend to always look on the bright side. Physically it drains me at times. The constant pain is a wee much sometimes.
Yes , I have learned to cope with it. I take it one day at a time. Changed my diet to organic and gluten free. It seems to be helping.
Posted on 8/4/18 7:22 AM
Thank you for participating @Susie41$ . I am glad you continue to be strong and resilient and I am glad you have found resource here at Carenity. When do you change your diet to organic and gluten free? What noticeable changes have you noticed?
Posted on 8/4/18 8:41 AM
When I got out of the hospital 11 days ago, no major changes yet feel better not as much fatigue.
Posted on 8/7/18 9:38 PM
Diagnosed June 2016 and have been in the ER 2 times with my kidneys shutting down once and was in the ER with the butterfly rash that turned into cellulitis I was losing a lot of my beautiful long hair and suffering with a lot of bad headaches and bone and joint pain. Also I'm very depressed because I don't have a life anymore my face bones even hurt and I don't know how to get out of this depression
Posted on 4/12/19 7:14 PM
I was diagnosed in the Summer of 2012. I had managed through many of the symptoms of SLE lupus (butterfly rash- I thought it was stress: aching muscles and bones-again stress and new arthritis symptoms). I had anemia, blisteres/sores in mouth and nostriles- no direct diagnosis(treated symptoms) but doctor offered no explanation. Finally I had lesions on my scalp that PA misdiagnosed as Ringworm....go figure. After 4 months and a variety of meds from antifungal to steriods, I was referred to a dermatologist. A biopsy was done and first diagnosis of discoid lupus. Referred to rhumethologist and after much testing, SLE was diagnosed. I have been on a regular dousing of Plaquenil for over 5 to 6 years with a few flares. I stay out of the sun and rest a lot more. I have had bouts of depression and anxiety which are managed with meds. Thankful for a hair stylist that helps me cover the many quarter sized bald spots on my head. I also have a great husband that understands when I am 'tired' and helps with everything from laundry to grilling. I have had to adapt but I am enjoying my retirement. I am looking forward to continued Lupus management!
Posted on 4/12/19 8:37 PM
My name Toya,
I was born in Cincinnati, Ohio and raised there for a short period of time. I was officially diagnosed with an ugly illness called Systemic Lupus Erythematosus in 1995. I was only the tender age of 9 years old at the time. Shortly after my diagnosis I moved to California. When I first moved to California my diagnosis was changed to MCTD (mixed connective tissue disease) by my Pediatric Rheumatoligist. Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, immunosupression, subacute cutaneous lupus (Discoid lupus), hypertension, Raynauds phenomenon, membranous lupus nephritis, fibromyalgia, complex migraine which goes hand in hand with the most recent encephalopathy. This illness comes with a line of overlapping illnesses and as time passes, more things occur. I'm at the point where I'm just trying to balance it all. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it. This is a view of my circumstance and life experience. Each person with lupus is different with different experiences.
Living with lupus has been one of the most struggling experiences of my life. I feel as though my life was stolen from me. I battle every day in hopes of one day finding a cure! I used to be so embarrassed about my condition because I felt as though many would judge me or misunderstand me. Now I'm very vocal about it because I know the benefits of raising awareness. I write books to reveal more intimate moments of my life and how I feel in a way of which I'm hoping that I could be of assistance to someone else.
I appreciate you for taking the time to read my story! Check out the rest of the website and contact me for questions, support, feedback or any concerns. Let's stand together and continue to raise awareness Take Care and Stay Blessed!