Good afternoon! I hope you are having a wonderful day and managing to stay cool despite this heat!
I was thinking about all that I have learned about Lupus and other autoimmune illnesses over the past couple of years and was wondering:
What do you know now that you wish you had known when you were diagnosed/awaiting a diagnosis?
It seems there’s always new information to learn and maybe someone who is newly diagnosed will benefit from our experiences!
I wish I had known to pay attention to the signals my body was giving me and had not run myself into the ground for so many years. I would tell myself I was fine; I probably just needed to exercise/eat better/work harder-I was just like everyone else. I really cheated myself for a long time and ended up paying the price for it…
I wish I would have payed more attention my symptoms and opened my eyes to see that what I was going through was the onset of Lupus. Initially, I blamed my illness on H pylori bacteria, which I thought I contracted by rescuing a stray cat (a black cat at that). This happened coincidentally around the same time I was sick. H Pylori causes many GERD like symptoms, and I was so convinced it was this, that I didn’t notice other symptoms, like the splotches that come after sun exposure. I noticed my hair thinning too, but I just didn’t have the knowledge to dig deeper. I was so naive, in the back of my mind I knew it was Lupus, I just refused to believe it. As I struggled, I realized if I didn’t keep track of all my symptoms, and remember to go see a doctor and talk about it, I wouldn’t get an answer. I also was putting my own health on the back burner to provide for my family. I know I can’t ignore my health anymore.
When my children were younger, I used to always say if I was Superman, my daughter was my Krytonite. She always exhausted me with her drama. I wish I would have taken it more serious and looked at my chronic fatigue. When my family doctor called with the results of my bloodwork, and gave me my appointment for Rheumatologist, I wish that I would have considered the possibility of Lupus instead of saying I'm not going to have that, its RA. I totally ruled it out completely. What little I had read before I went to my Rheumy, I completely dismissed and decided I wasn't going to have it and that's that.
To keep my own records of all my tests and results because, not all doctors work and play well with others. Getting a copy can be expensive and since the doctors wont or cant notify each other its up to me to keep everyone on the same page. It also prevents the insurance company from refusing to pay for duplicate tests since I can give the doctor requesting the test the gist of the results.