Hi, my name is Roxanna, and I was diagnosed with Lupus SLE last summer of 2012. I believe I have lived with this condition for a long time, but was not diagnosed before. At the time of my diagnosis I was under a lot of stress, dealing with a divorce. All the changes associated with my divorce put a huge strain on my emotional and physical state. I am also a mother of three boys. and it is a juggling act to keep all in order and drama free.
My lupus flare up first came as an unexplained fever. I was tired all the time and had a lot of joint pains. As time passed I began having problems with coordination and balance. I fell many times. I could not understand at that time what was wrong with me. I was an athlete in college and have won medals in 400 meters track and field. I also was an aerobics instructor and personal trainer some years ago. However, in June 2012 my leg’s could not support my body, and I had to go to the hospital to be treated urgently.
I am still searching for answers, and I try to read all I can about my condition. It is very sad that there is no cure for it. Scientist are just beginning to understand how this disease works. I have been taking plaquenil, naproxen, prednisone, ondanzetron, concerta for seven months now. I recuperated from that flare up a few weeks after hospitalization. However, I am starting to feel bad again. This past week I started developing high fevers, and pain in my shoulder’s. I can’t reach above my shoulder’s, it is hard to wash my hair, cook, and do regular chores. Even a hand shake hurts.
All I can do is make the best of the good days, and rest on the bad days. I wish family would understand better. I guess because I look good on the outside people don’t know how it feels on the inside.
I just turned 40 a few days ago and I plan on celebrating many more birthdays with my kid’s. “We have two options, medically & emotionally: give up, or fight like hell.” — Lance Kenneth Armstrong
Roxanna
Submitted 3-4-2013
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
I was finally diagnosed with SLE (Lupus) in 1999 but first started going to the dr. with low grade fevers; nausea, dizziness, joint pain, and extreme fatigue in ’91 (when I was in my early 30’s). I do believe my problems actually started in my late teens to early twenties, though….(I’m 55 now)!
It is very hard living with this sometimes….but I just trudge through the pain and keep going as I really have no choice. I take plaquenil and methotrexate on a regular basis and prednisone only when the flares get extremely bad! I have taken many other drugs that really don’t seem to help with the pain…I have had shoulder surgery; a complete knee replacement and many, many injections in my shoulders, knees and feet to help with the pain and inflammation. I also have secondary sjogren’s and have been told many times I have “mixed connective tissue” disease. It is still so confusing at times because of one problem after another! But, I still consider myself very lucky as I am able to get up every day (even though sometimes I may not feel like it) and enjoy my children (3 boys who are all grown men now) and my beautiful 7 yr. old granddaughter who I’ve helped to take care of since she was born!
Like you said~we have two options-give up or fight and I choose to fight like a girl! (just like you do) 😉