My name is Dency, I am 36 years old and live in a small town in Texas. I have 3 children, all girls, ranging from 1st grade to 6th grade. My youngest was by birth and my oldest we adopted when they were 9 and 10. I am a certified English teacher but use my training in teaching a 4 year old class at a Mother's Day Out Program. I love my job, it is physically hard, with Lupus, but since it is only 2 days a week I am able to manage it at this time. I never thought I'd view a part-time job as a long term career. Once I was diagnosed I knew this was a job I needed to hang on to and look at as my future.
My mother died from Lupus complications 4 and 1/2 years ago at age 60. I was diagnosed with Lupus, a year and 1/2 ago, close to the 3 year aniversary of her death. I learned much from my mother on how to cope but, I don't have her to answer my questions now. That's why I am reaching out now. Luckily, I have good friends that I work with and husband that knew the min I told him it was Lupus what that meant...he saw my mother live through her last 8 years of her Lupus.
Also, lukily my Dr caught mine before I did. Since my mother had it most of my life I figured I'd catch it first. I went in complaining of tiredness, confussion, not dealing with anything well, etc figuring I'd be put on anti-depressants. This Dr had been treating my arthrisitis for a year. I was telling her my symptoms when she was fliping through my file and saw on my history that my mother had had Lupus. My Dr's sister has Lupus and she herself has bad arthristis. She immediately started asking me, without telling me what she was looking for, questions relating to Lupus symptoms. I answered way too many yes. Then she told me she thought it was Lupus. I sat there stuned but not shocked. Why didn't I catch it? Even with positive test results I questioned it until I went into a flare up Christmas before last and got the full blown rash I had seen so many times on my mother. That was the true blow. That's when I cried and cried.
When I'm in a flare up or trying to stay one off I feel sooooo helpless and useless to my family. I also have Type II diabetes so that just adds to my health problems and frustration.
I went through pretty much the same things as you - only in reverse. I was diagnosed with Lupus almost eight years before my daughter was diagnosed. Even after dealing with my Lupus for that long, I still did not immediately recognize the symptoms in my daughter because her Lupus was completely different from mine. Therefore, I was not able to answer many of her questions about her symptoms because I did not recognize them. It is true that no two Lupus sufferers have the same symptoms.
You are very lucky to have a husband and freinds who are understanding and supportive and a doctor who recognized your symptoms quickly. I completely understand the fatigue, confusion and inability to function during a flare. For me, the fatigue is the hardest part to deal with because it completely debilitates me!!
I wish you the best, we are here to help you in any way that we can. Please know that you are not alone.
Welcome and Thank You for participating in our forum
I was the other way round. I diagnosed myself long before the dr's did but as I was a nurse I wasn't taken seriously. I took 18 months to be diagnosed relatively quickly but only through my persistance.
Ttreatment is improving all the time and eventually they will find a way to improve our quality of life.
I can come to terms with my destiny and having been forced to retire I enjoy my good days and tolerate the bad days. Pacing oneself is important and when I don't I pay for it.
If you ever want to chat please feel free to contact me. all my links are under my post.
Thank you both for the warm welcome. It is nice to hear from others that have lupus.