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Life With Lupus

About the Greetings and Introductions category


#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you


#2

Hello,
I am a 60 year old female who has Lupus and Sjogren’s disease. I’ve had this disease a couple of years, but this is my first time talking about it online.

Right now, I’m having a flare-up. My eye lid is swollen. It is still a work in progress about changing my diet. Over the years I have changed my eating habits.

I also view YouTube a lot to get information and exercises on Lupus. This has helped me.


#3

Hi my name is Abigail this is the first time i actually reach out and become part of a group or community with my disease so I’m very grateful and happy to be part of it. I was diagnosed with Lupus in November 2015 after having many treatments and different diagnosis it was very hard for me because it took me doctors from 3 different states to finally give me the right diagnose. I am 39 years old and a single mom so I went through alot because it was hard for me to keep up with my kids and work until one day the pain was at its worse I couldn’t move without screaming because my whole body was acking my life changed and I had to move in with my parents because I couldn’t work anymore. I was so sick that at one point I thought that my life was over and the only thing I could think of was about my kids and I fell into depression it was so bad that I would not eat or get out of bed and my mom had to bathe me but that is all in the past I’m finally doing better and very proud of myself I look forward to life and trying to keep my health issues under control because my kids need me.


#4

Hi, my name is Elysium, but most of my friends just call my Elle. I was just diagnosed with Lupus in June 2017; though, I am no stranger to chronic illness. I was actually diagnosed with migraines the day before my 18th birthday. Each year since, the migraines took over more and more of my life. It was very difficult for me as a single mother because I felt as though I was missing out on many significant parts of his life. There are times he is still angry at me because he sees that I can’t get out of bed and go do more, which breaks my heart.

2014 was a crushing year. I had worked in special education for five years. I was basically only able to work a few days a week, and was about to be fired, so I quit to avoid the reprimand and I suppose save my pride. I ended up needing knee surgery, and right before my surgery, my partner broke up with me over the stress of my health issues. I had been hospitalized over migraines, lung issues, and GI issues… and it was too much. When I quit my job, the hope was I would do all the cooking and cleaning of the home, but I was bedridden like before I quit the job. So, I had to cope with healing from surgery and moving out with no finances to move anywhere.

In 2016, I was diagnosed with Idiopathic Intracranial Hypertension. This is when the central nervous system starts over producing cerebrospinal fluid increasing the pressure on the brain. Fluid was building in my optic nerve and I was losing my vision in blackouts. I had to quit driving. I started fainting all the time. I was sent to the cardiologist and was diagnosed with POTS and orthostatic intolerance. During a December hospitalization, the found that a vein in my brain was occluded, most likely a congenital defect, and this was causing most of the pressure to back up. The surgeon wanted to place a stent, but my insurance refused.

In February 2017, I had to be rushed into emergency brain surgery for the stent. My brain was shutting down do the pressure of the fluid. My surgeon was a god-send. To this day, I don’t know if the insurance paid or if he did it pro-bono.

Shortly after my surgery, I was having trouble walking, moving. I hurt all over. From the top of my head to the bottoms of my feet. I was dizzy constantly and had the worst tinnitus every. My PCP sent me to the ENT who thought it Meniere’s. I was then sent to a rheumatologist. Turns out, it wasn’t Meniere’s… instead I was diagnosed with Lupus, hypermobility syndrome, inflammatory arthritis, and fibromyalgia.

I am trying to turn to online communities for support and understanding. I sometimes need to vent or have people going through the same thing to talk to. I am grateful for my family. My girlfriend is amazing. She has been my rock. And my son… well when he isn’t driving me to the loony bin, his wit can make me laugh like no other. We are all just trying to navigate through what has become our new norm.


#5

Hello, everyone can call me Fitz. I am a 40yr old male and have ben dealing with SLE for 14yrs now. I was a carpenter and doind well in my life when one day I woke up and could not move. Well, I could move it was just unbearably painful and made every joint extremely stiff and very hard to make myself do. After my diagnosis I freaked out and at that time there was very lttle support for lupus. I had no other option but to listen to the doctors and research as much as possible. Through the years I ave been quite surprised. I was started with a cytoxin drip and when that wasnt doable I was put on a combo of high dose Prednisone, Cellcept, Plaquinil, high blood pressure, anti-anxiety and pain medications. When I was first talked to by my doc he said that if my body continues to do what its doing at this same rate, I would be a 1-2 year termnal case. Ha! I have learned many, many surprising things and it is just mindblowing to me that the " general" health system has the mentality that it does. I know there are some wonderful and truly empathetic docs out there. I do appreciate them very much. The same time, there are the opposite or maybe more of a grey area I guess. In my case I believe I would have been much better off without the high dosage of all the meds and that is what the research is confirmimg to me. Everyday now is a beautiful struggle. Beautiful in the way that I am alive and still find a ton of happy, wonderful times and relationships. The struggle is the ying to that yang. I never know from hour to hour what my body is going to decide to do. That in itself is very frustrating! I took myself off 90% of my meds so that is an issue all by itself! I am here to support with my experience and need support quite badly at this point. I thank anyone willing to put themselves out there in order to help themselves and others. I look forward to learning from and being here for you all. Love and light!:grinning: